Jess's Journey

An exciting moment for Jess's Journey!

2008-02-12T22:30:00.000+11:00

www.dyingforbeginners.com

Greetings all! A couple of reasons for the delay in posting, the main one being that Jason and I have finally done it - we have set up our website!

It is still in work in progress stage, but my personal blog is definitely up and working, and in the process of being archived to the new site (including comments). All of this year's posts have been copied.

There are also a number of other sections that I hope you will support - book reviews, alternative therapy reviews, course and retreat reviews, and of course, the main discussion forum (which is not yet working, but it will!)

There will be an official launch in the coming weeks but since it is now where I will be blogging and because you have all been so loyal, we thought we would share it with you early.

Please, if you read a book, a review would be fantastic... disagree with the review? Let's have discusssion! Have you heard about an alternative therapy or treatment? Let us hear about it as well. And when the Forum is up and working, please register and join in as well.

And don't forget to tell everyone about it! So many people are affected by cancer and disease and have no one to talk about. I am trying to bring us all together.

This website is designed for people to find somewhere to be listened to, somewhere to listen, somewhere to share and somewhere to be understood. Oh, and maybe have a laugh or two.

Thank you so much for all your support on this blog. I am looking forward to your continued support on the new website.

May God bless you, and God bless the new site.

With much love,

Jessie xoxoox
www.dyingforbeginners.com

Thought for the Day (We're down to one or two these days...)

2008-01-29T23:25:00.000+11:00

A thought today, no real information about how I am (not too bad, thanks for asking. Plodding along).

We went to a movie on Sunday, Jason, Em and I. We wanted to see the Water Horse but it wasn't at a suitable time so Mr Magorium's Wonder Emporium was the one chosen.

Em quite liked the movie, but was far more concerned about the absence of junk food in her lap.

I absolutely loved the movie.

And for the same reason that I loved the movie, it saddened Jason.

Mr Magorium, after a couple of centuries of running his magical Wonder Emporium toy shop, decides that it's time for him to move on. To leave. To die, is the word that no one is ready to use. His assistant Molly (to whom he plans to leave the Emporium) certainly cannot accept this and goes to great lengths to talk him out of moving on.

The trouble is, Mr Magorium is more than ready. He has done all he wants to do in this life, and he is ready for the next stage of his journey. He is blissfully happy with his life and achievements, thankful for all the joy it has contained and is ready for the next stage. So am I.

Molly is not. Jason is not. And they have the harder jobs - that of staying. Of keeping going. Of holding on.

In the meantime, if I want to talk about the next part of my journey, it saddens everyone. I am in this unique position in my circle of family and friends. And I don't want to sadden anyone. I already feel guilty about having the easy part.

I will be truly gone when no one holds me in their heart; when no one remembers me and when no one thinks of me. When there is no one left to love me, that is when I will truly be gone. Love will ALWAYS find me as long as you hold me in your heart.

Thank you for making my life so happy that ironically I am ready to embark on the next stage of the journey.
Thank you for all the joy that is in my life because of you.
Thank you for loving me.

May the Lord bless you and keep you, let his face shine upon you and be gracious to you. May the Lord look upon you kindly and give you peace.

May you know the tremendous peace that God has placed in my heart.

With much love and gratitude,

Jessie xoxoxox

PS Oh, and really - I'm not too bad. I've just re-read this post and it sounds a bit like a goodbye post, but it was really just a thought I had about people being in completely different places and thus interpreting things like movies in completely different ways.

Add a 38.8 degree temperature to that list...

2008-01-22T19:20:00.000+11:00

And you get pneumonia.

On Wednesday the pain was unbearable, the nausea terrible and I had a temperature. Time to go in to HOCA. In a display of superb timing, my doctor is on holidays and this also happens to be the week-long window that I have to get medical certificates from my doctors to continue receiving TTD benefits.

I'm still on radiation (at a different hospital) as well.

Anyway, I am admitted into the Mater with suspected pneumonia. It's Amy's going away party on Friday, I have a girly sleepover on Saturday but the words pneumonia are pretty good at shutting me up.

They hike up my painkiller levels, try a new drug to treat nerve pain and pump me full of intravenous anti-biotics. Thursday I feel SO much better.

Top Five Things About Staying in Hospital (It was originally 10 but I couldn't come up with enough):
5. You get a newspaper every day.
4. You get a Homer Simpson bed ('Bed goes up, bed goes down...')
3. They have blanket warmers so you get a warm blanket whenever you're cold.
2. There's a button to push to summon someone when you want something (usually a warm blanket).
1. You can stay in bed all day and no one thinks you're being lazy.

I'm not even going to bother writing the list of the Crappest Million Things About Staying in Hospital. Especially when it's a flower-free ward.

I'm still on radiation, so Jason had to drive me to the Wesley every day for that (after they disconnected me from the drip.

Unfortunately, in the mornings, I'm finding it really hard to wake up and stay awake. Almost impossible. My eyes just keep closing. Side effect of a lot of the painkillers.

And the nausea is still really bad. I also have pleurisy in my left ribs which is causing huge amounts of pain whenever I breathe in. The doctors assure me that it will wear off.

In the meantime, I am the proud owner of an oxygen machine and an oxygen tank. It has a very long tube though so I can sit in the lounge or lie in bed or whatever. I don't need to use it all the time, but it helps with my cough and I feel much better after re-oxygenising. They sell this stuff on the Gold Coast and in Tokyo for $10/10 minutes!

So that's where I've been all week. Thank you to everyone who came to visit - sorry I was pretty dopey most of the time. Thank you to all the girls who came to recreate the sleepover in hospital anyway!

I hope you are all well... God bless.

Much love,

Jessie

Wife Wot Waddles

2008-01-15T22:09:00.000+11:00

Conversation between Mr and Mrs Horton today:

Mrs Horton: "Darling, your wife waddles."
Mr Horton: "That's okay, I don't mind. As long as she doesn't yodel."***

(I realise that this is probably a very disturbing insight into our relationship for most people...)

I started radiation on my pelvic bone and hip bone, as well as the lumps in my neck. Apparently when you radiate bones, it's really really painful for the first couple of nights. They're not bloody wrong. I'm in agony.

Sources of pain:
- Right leg. I can't lift my right thigh without a lot of pain.
- Lower back. Massive bone pain in my spine. Thus the waddling.
- Shoulders. Pain in lumps. Pain across all shoulders.
- General aching. Moving hurts. I move like an 80-year old woman.

The other drawback to being in pain (apart from being in pain) is that I have to take a lot of painkillers to get rid of some of the pain. Which puts me in the fug that I absolutely hate. I think I've whinged about the fug quite a bit.

Anyway, I hope that the pain from the radiation will settle down soon. On the plus side, the lumps in my neck seem to be less red and swollen. So it seems to be working.

Just an update as to where I am. (Nowhere very nice.)

God bless.

Much love,

Jessie xoxoxo

***At this point Mrs Horton pulls the cord on her Cowgirl Jessie doll and she yodels. Sadly, this story is true. By the way, MJ, I put Cowgirl Jessie in with all of Em's toys and teddies and she gave her back to me on the weekend, telling me she was yodelling in the middle of the night. That doll is definitely haunted.

I am in Flow...

2008-01-12T22:42:00.000+11:00

By the simple expedient of doubling my pain killers, I am feeling so much better. I think the problem was that I was using old patches that no longer had any potency. It has made me realise just how much background pain I would be in if I wasn't taking pain killers.

Anyway, the drawback is of course that the parallel universe that exists when I close my eyes is back. I am learning to not speak immediately after waking up after any of my hundreds of micronaps throughout the day - "Careful, the animals are on the edge of the mattress" does make you sound crazy. And I'm not - I just fall into a groggy doze very very easily. Ie any time I'm sitting down for a period of more than 30 seconds. Buses are dangerous - I can end up anywhere at the moment.

But, I feel good, and I can gradually decrease the painkillers.

In fact, I'm probably a little bit manic - doing everything at speed and constantly doing SOMETHING. I can live with that. I feel like I'm getting things done during the day and that makes me feel good.

I'm actually enjoying a pressure-free January - no Christmas or any big event looming that I must prepare for. Just radiation everyday which is pretty cruisy. (Oh yeah, did I mention we were doing a couple of weeks radiation? Should help with the lumps in my neck and some of the bones in my leg and pelvis.)

Also spending a lot of time with Amy - as much as possible. She is off on her big trip around the world for a year or two with Dave. They leave on Australia Day. She and I are going away for a day or two just before they go. I'm terrified of saying goodbye to her.

Otherwise, I am in Flow. Things are working the way they are supposed to. I am very very happy.

Thank you for your love and support over this past bad week. And thank you Lord for being there every moment as well. I am never alone.

I am, however, much loved. Thank you for the happy flowers! I love happy flowers.

Next post will probably be a whinge again :) What a roller-coaster this is.

I am loved; I am blessed. May you feel as loved and blessed as I. May God bless you as richly as he does me.

WIth great love,

Jessie xoxoxo

I am not well.

2008-01-08T17:51:00.000+11:00

I am not well, and I haven't been well for a couple of weeks. This explains my quietness. This is only a short post, since I have to go into the hospital in a minute, but I wanted to let you know why it's been so long since I've posted.

I'm not well.

Various problems: pain, nausea, constipation, the heat, low energy - it all just combines to make life difficult.

I am trying to take it easy and not beat myself up about anything. Please forgive me if I don't answer calls or texts - I will eventually.

I start more radiation on Wednesday - the lumps in my neck are getting enormous, not to mention painful. Only ten fractions, so two weeks, then I go back to the chemo and Avastin.

I spent yesterday lying on the floor of the waiting room in tears because I was in so much pain. There is not much dignity down there.

Feeling a little better today, but I need to be clear - I definitely have bad times as well. Now is one of them. Please be patient with me.

I am trying very hard to practice what I preach and trust one hundred percent in God. And in sending me Jason He has blessed me beyond measure. My family is also wonderful.

I cried and cried and cried yesterday because I wanted to take Timmy shooting for his Christmas present, but was in so much pain I had to go to hospital instead. I felt like I was letting him down and it was something I had so much wanted to do with him. Dad and Richelle took him anyway, and he had a great time - he came over afterwards to tally the score - but it was so much something I wanted to do WITH him. Timmy is such a good kid, and he has been so supportive of Mama while she supports me. I will take him shooting at Easter.

Anyway, just letting you know that life isn't always beer and skittles, and that I'm going through a rough patch.

I hope you are all well.

May God bless you, and may you be able to see God's blessings even when it's foggy.

Much love,

Jessie xoxoox

Full belly, good company, tra la la...

2007-12-22T00:16:00.001+11:00

Just a quickie post.

I am in an interesting cycle. If I get something done - if I achieve something I feel is worthwhile - I feel good. If I feel like I've spent all day sitting around being 'sick', then I feel worse, I feel useless and I spiral downhill rapidly. Unfortunately, if I'm not feeling well to start, then I am extremely unmotivated and usually in pain and discomfort, and unlikely to get anything 'done'.

I probably need a short list of achievable tasks. Oh dear, I need to baby myself. Any suggestions? Things I can do even when feeling completely rubbish so that I feel like I've done something worthwhile?

Just had a fantastic evening chez Amy, Dave and Julie. And I 'achieved' quite a bit today (all houseworky stuff to get ready for our visitors). Given I started the day feeling lousy, I'm very happy about that. I have a nasty cough that I can't explain or get rid of. I'm a bit worried about it - Christmas is next week and I really don't want to get sick. But my chemo doesn't seem to impact my immune system, thank goodness.

Anyway, I wanted to offer my Christmas wishes while I was feeling good and happy and Christmassy, not all whingy and miserable like last post.

I hope you have a lovely, relaxed Christmas, spent with loved ones, and special in whatever way is special to you. May it have all the four Fs - faith, family, friends and food.

May the birth of our Lord be a time of great love and peace for you.

God bless you at this very special time.

With much love,

Jessie xoxoxo

'Tis the season...

2007-12-20T23:31:00.000+11:00

Still having a bit of a bad run, but whinging is SO last post. Just very tired and quite emotional too. 'Crashing' a bit as well - ie suddenly so bone-wearingly exhausted that I can't even stand up or finish a sentence. Quite teary for stupid reasons or even no reason at all. Just a bit - I don't even know. I just feel off-colour, flat and unmotivated.

Anyway, Tuesday was the day for the scans... a big day, to find out whether the Avastin is working or not, and therefore whether we keep going.

And while the tumours have not disappeared (which some people were hoping against hope would happen), they have not grown. It is keeping it under control. Thus, it is 'working' and we will keep going. This is good news. We can keep it under control. We'll scan again after another three cycles.

Clem Jones died this week. What a truly good man. He did great things for this town, and great things for so many individuals, including us. A good man, who lived a good life. It's a good epitaph. Vale, Clem. Thank you.

(We went to his Christmas party a couple of weeks ago. I really hope he had a rum ball.)

I hope you are all well. Have a wonderful Christmas, relax, spend time with your loved ones and remember that we are celebrating the birth of a man who brought love, peace, grace and salvation. Not lots and lots of presents :)

Although I must say, that as my first year playing Santa, I got a little over-excited...

Merry Christmas.

God bless,

Jess

Jessie Make Bang Bangs

2007-12-13T23:16:00.001+11:00

Usually after a post like that, I write something beautifully brave and inspirational. Well, shove it. I'm still as cranky as a big brother inmate in a house with no mirrors.

I'm in the process of switching one of my drugs. I'm not taking morphine for breakthrough pain any more, I'm taking a new drug called Ativan which is kinda an amazing all in one - anti-nausea, anti-anxiety and muscle relaxant. Like valium but better. I love it lots already; a lot of my pain is nerve transference and muscle tension, so the muscle relaxant works as well as morphine. Hopefully it will make my brain a little less foggy, and it's a hell of a lot better on my poor liver. It does make me sleepy though, but as I take it more and more I'll become immune to that.

I've been very teary and emotional lately. Rarely over the big stuff, just the little stuff. I'm so frazzled over Christmas and I really shouldn't be. It should be a time for peace and joy and spending time with people. But I'm going through another 'I'm so overwhelmed' phase.

I went shootin' on Monday. It was awesoeme. Made me feel so much better. So, whenever I feel lousy, I just need to shoot a gun. I might check out the gun range at Carindale. Ipswich is a bit far to go each time, even though it was totally awesome. Then again, Richelle's up for it, so maybe I'll just go out to Ipswich each week. I'm actually pretty good too. All my rounds hit the target and most hit pretty close - and a couple of bullseyes. It's very meditative... you have headphones on so you've blocked out the world, you have your little set up routine, you centre yourself and breathe as you aim, and then you freakin fire a gun. Heck yeah. Stress relief baby. Pity you can't really do it in short shorts.

I have also devised the ultimate make yourself feel better when everything sucks. It is very simple. You say "Woe, woe, woe is me." In the most whiny, pathetic, whingy, drawn out voice of misery possible. After a couple of attempts, I get a bit disgusted at how pathetic I sound and move on. Try it sometime. (It's a bit more accessible than shootin' stuff too. Although I REALLY liked shootin'.)

Wooooooooooooooooooooeeeeeeeeeeeeeeeeeeee, wooooooooooooooooeeeeeeeeeeeeeeee, wooooooooooooooooooeeeeeeeeeeeeeeeeee is meeeeeeeeeeeeeeeeeeeeeeeeeeeeee.

God loves me no matter how pathetic I sound.

And for some reason so do you lot. Ta for that by the way.

God bless you.

Jessie (Pow! Bang! Pow!)

PS. Thanks Chelle. I needed that.

The Dark Side

2007-12-10T16:24:00.000+11:00

I know I'm all brave and inspirational and so well adjusted and all that rubbish. But there is a serious dark side and it's been coming out lately.

I am NOT coping with the heat. I am virtually comatose in the heat - it makes the pain worse, it makes me really stiff and achy and it makes me miserable. I get very sooky and teary. So I am not a happy camper lately. I spent most of this weekend either asleep or in a LOT of discomfort and pain. This morning I cried from the pain - something I very rarely do.

I also think I will stop playing as much chess. It is extremely depressing to have a measurable sign of how much my brain is deteriorating. I lost 150 rating points in the past couple of months. And I'm just missing things. Big things. Like rooks.

I am very much noticing the effects on my brain now. Mama has established a policy of telling me after I've repeated something three times. (I am turning into Nana.) I forget things, I repeat things. I don't remember words or names. I am completely all over the shop. And things are so foggy in there - a perpetual narcotic miasma that makes sharp clear thinking impossible. I almost don't remember what it was like. I used to be so intelligent.

But the Dark Side? I am becoming obsessive about the unimportant stuff. It is not unusual for me to have a freak out at midnight about the need to get the washing done. I'm obsessive about the cleanliness and tidiness of the kitchen. It's really quite stupid.

We think we have worked out what it is though. I am so freaking well-adjusted to the big bad scary stuff in my life (ie the dying bit) that I don't have anything left to cope with the basic kitchen cleanliness stuff. I'm just projecting all my anxiety and worries onto something I can actually change. It is the same thing as when I'm in hospital - my tray MUST be impeccably arranged. It's my way of controlling the things I can control when there is so much that i can't. And I'm not the only one doing it.

I have also started apologising manically for being such a burden. And that is just stupid. I think I feel like I should be the perfect housewife, perfect wife, when it's all I can do sometimes to get out of bed. (Sometimes I can't even do that.) I feel bad asking people to do things for me. (Like get me painkillers or make food.) And I feel bad letting people down if I can't go out. I'm caught in a stupid guilt cycle and need to bust out of it. People who apologise all the time are really irritating.

I love Jason so much - he can see all this stuff when I can't. It is so amazing to be with someone who loves me so much and is a wonderful carer, companion and partner. God blessed me so much when he sent me to that party instead of the movies.

Thanks for the vent - I'd apologise for being a burden but I'm trying to stop that *wry smile*.

With much love,

Jessie

PS I'm wearing short shorts again today which has cheered me up a little.

I like short shorts...

2007-12-07T17:54:00.000+11:00

I am currently fascinated by my legs. They are hot. Not just hot. They are HOT TAMALE YOU GO MAMA hot. They are lookin GOOD.

I can wear short shorts. I can wear mini skirts. And not look ridiculous. I am a serious hotty boom boom.

Ooh yeah baby.

The fact that I need to have a terminal disease that eats away at my own body and takes away any desire to eat in order to be this hot does present an interesting hypothetical question.

(While I like being a hot mama, I was doing okay before too and would rather be healthy and enjoying food. Since that is currently not an option, I am going to enjoy being a serious babe. Cause it rocks too.)

I will post some short short shots. And some mini skirt shots. Everyone should share the love.

I also bought a very cool new wig. I will get a picture taken and post. It is great fun.

Bit of a big week really! After the newspaper interview - which came out on Saturday - I'll post it up here tonight - I had the actual Luncheon for Leukaemia on Friday, which was really lovely. It was down at Teneriffe, at Platform 6 I think, and there were some great people there. The fashion show was really good, and some good information from a beauty therapist too. If you're looking for a good fundraiser to do with a work team, or a group of girls, this is a really good one. They're trying to hold them every two months, so get in touch with the Leukaemia Foundation for more information. The food was fantastic - six course degustation - and it was just a lovely pleasant afternoon. Some very nice lucky door prizes and a goody bag for everyone. A great way to while away an afternoon while supporting my favourite organisation.

The weekend was big too... On Friday night we had our church trivia night/end of year concert, which was lots of fun. I love trivia, even if my brain has started keeping things in different directories. Saturday we went Christmas decoration shopping and then we set up the Christmas tree, decorated the house and put up the advent calendar - as in Mama's beautiful patchwork calendar. So the place is looking good - lots of shiny sparkly lights, which is enough for me!

Sunday was a very sleepy day, but unfortunately busy... Went out to Wellington Point to see Jacqui and family before they sell their house out there, and then Beata was a trooper and took the girls swimming so I could get a quick nap in. Very good to see Jacqui and family though.

This week was chemo week, so a bit blah. Chemo all day Tuesday, and been feeling a bit blah ever since. On Wednesday I went to speak at a lunch at the new village - not my greatest ever, I was really tired and not feeling great. Lovely lunch though. On Friday the Foundation had their Christmas lunch for residents which was lovely - anyone detecting a theme here? I've had lunch with the Foundation three times in the past seven days... not bad! I did sing for my supper at two of them though...

Otherwise just spending time with loved ones... Amy and I have instituted sashimi and trashimi night - highly enjoyable. I am happy.

Just don't mention Christmas. I keep getting smug messages from Mama and Beata about how they've finished their cards and presents. Well, I have a to do list. And that's not bad.

It's been good to hear from a few people who read the article in the paper and have got in touch via the blog.

I've been thinking about what makes a good nurse, Ann - it's an excellent question. I think the big thing that differentiates nurses is the ability to see a person, not just a bed number. Every single patient is going through their own personal journey at that moment, and the best nurses remember that. It is very easy to get caught up with the fact that there are eight other patients in the ward with the same thing as you or worse, so stop making a fuss. The best nurses are those who remember that Sally hates needles, or Fred likes to have his wife there when the doctor comes. It's just about treating patients as people, not just patients or numbers or conditions.

But to be honest, the fact that you care enough to try to find out what makes a great nurse already says that you probably are. And when in doubt, just ask yourself "What would I do if this was my mother?" Good luck with it all Ann! Nurses are incredible people - I have a lot of respect for them.

So I'm happy, it's a good week. For the first time in a few years, Christmas is feeling very festive - it's nice to have small people around. And I have discovered why my Santa stocking was always so full - it is LOTS of fun to buy little presents for little girls and I need to control myself!

Over the next few weeks make sure you don't get caught up in the hype or consumerism or 'must do' or 'should do's - spend time with your loved ones, take lots of time for yourself and thank God for his incredible blessings in your life.

God bless you.

Much love,

Jessie xoxoxo

The Ten Best Things About Having Cancer...

2007-11-28T21:58:00.000+11:00

10. The chemo ward is the only place that still has a dedicated tea lady.

9. You always have a simple and effective method of turning away spruikers. Without lying.

8. If you have a fancy event to go to, you can get your hair done the day before and just put it on before you go.

7. You can eat dessert first, guilt-free. And still lose weight.

6. You always win the "You think you've had a crap day..." argument.

5. If you need to get out of a situation, you can always puke.

4. You can always blame the brain tumour when you forget someone's name. (Try to get your husband's name right though. This one can only be stretched so far.)

3. When you go to a party, you know you've got the best drugs there. (And they're subsidised by the PBS.)

2. Painless Brazilian waxing.

1. You're one of the few people who can make jokes about having cancer without being called an insensitive jerk.

Don't forget to pick up a copy of the Courier Mail tomorrow (Thursday!) I'm a bit nervous about the interview - after so long blogging for family and friends, I'm in the habit of sharing all and answering all and any questions... but this is a much more public forum! So I'm a bit apprehensive about 'coming out'... Let me know what you think!

Actually, make that Friday's Courier Mail... apparently Thursday was a busy news day and I didn't make the cut ;)

Yes, I KNOW it's not in Friday's either... how could I compete with "Racing's Back!" I don't know when... try again tomorrow :)

God bless,

Jess xoxoox

New Resolution

2007-11-26T23:42:00.000+11:00

I must, must, MUST stop telling the truth to spruikers and charity muggers and those people selling credit cards. It's just not nice. A simple "No thank you" is much more polite.

Amex guy today: "Hello, do you like to travel?"
Me: "Yes, but I don't travel."
Amex guy: "Why not?"
Me: "I have cancer and can't get the insurance."
Amex guy: "Oh." (I guess that's not in the script.)

It does shut them up though :)

Just had a rip-roaring weekend. Saw Ben on Thursday night after making my annual Christmas rum balls with Beata during the day. It was so good to spend some time with my bro.

On Friday afternoon we picked up the small one and went to Big Sophie's birthday party. I think I like childrens' birthday parties much more when I'm not hosting them and it's not pouring with rain. A family game of Yahtzee afterwards showed that karma has just bit me on the tush and that I now have a step-daughter who is just as competitive at games as I was at that age. (Not to mention a husband who applies full poker theory to the game.)

On Sunday we went to Soph's dance concert. It started at eleven, so I asked Jason to pick us up again at one. At twelve thirty I texted him to not bother, since we hadn't even had intermission yet. One o'clock intermission and the canteen ran out of food. Lots of hungry kids. It ended at three. Ho-ly mo-ley. Talk about epic. Good, but epic and not enough food. Boy am I getting a crash course in small girls.

Sunday night we went to Clem Jones' Christmas party (his 47th annual party!) Clem is actually our next door neighbour - part of our yard is taken up with his tennis court, which was marqueed off to hold the party! Bit disconcerting to look over to see our washing bobbing merrily on the line... Oops. But jumping the fence is a nice easy way to get to and from a party...

It was a great night. Clem is a phenomenal man, very generous. He owns six of the houses surrounding his (including ours) and 'leases' them rent-free through the Leukaemia Foundation to people who need them, usually families from the country who need to come to the city for treatment. This is just one of many of his philanthropic activities.

So lots of energy for most of the weekend. I'm getting the drug balance right and getting as much sleep as I can. Oh, and coffee is very important to me too :) Still in quite a bit of pain so taking quite a bit of morphine. This does have unfortunate effects like me sitting here saying "Jason, what did we do on Saturday?" in order to write this blog. Things get a little fuzzy.

But I have a very exciting week ahead. I'm speaking at the Labels for Leukaemia function on Friday and doing an interview for the Courier Mail on Wednesday. I'll keep you posted as to when it's published, don't worry...

So, in the spirit of getting lots of rest to keep my energy up, I should really go to bed...

Life is good. I am happy.

Much love and God bless,

Jess xoxox

The Fall of the F...

2007-11-23T02:00:00.000+11:00

I, Jessica Anne Horton, Gourmet and Gourmand Extraordinaire, am no longer interested in food.

I forget to eat. I don't feel like eating. Most foods are quite distasteful to me.

Food is, or was, one of my four pillars of life. Faith, family, friends and food. I would like to make a really witty crack about replacing food with a new pillar - my husband, but there is absolutely no way to make it clean so I'm going to let it slide...

Chemo has officially killed off my tastebuds. I need really strong tasting salty foods to get through.

Unfortunately, at the same time, I'm getting agonising reflux pain. Eating hurts, deep breathing hurts, and changing position (lying down or standing up) hurts. So I'm supposed to be eating fairly blandly to minimise the reflux pain. Actually, I've doubled my reflux drugs and it is getting better fast. Hopefully in a day or two it will be all gone.

Energy wise I've been doing pretty well this week. No bone-weary exhausted episodes. Is good.

I am really happy at the moment. I feel a lot more in control of my to-do list, just knocking off one thing at a time, and I'm really looking forward to Christmas. We are having Mama, Dave and Jason's Mum to stay for Christmas and I'm looking forward to our first Horton family Christmas.

Next weekend is the 1st December so we're going to spend a day getting into the Christmas spirit - decorating the house, setting up the advent calendar and putting up the tree.

Hope you are well. Tell someone you love that you love them today, and make plans to spend some quality time with them. Life is short. Call them now.

God has a thousand ways where I can see not one.
When all my means have reached their end
Then His have just begun.

May God great you many blessings in your life, and just enough difficulties to appreciate them all.

With much love,

Jess xoxoxo

Jessica Horton, Party Animal Extraordinaire

2007-11-19T01:52:00.000+11:00

Was it really so much to ask? I just wanted a girls' night out. My body was craving salmon and I wanted to take it somewhere nice to for quality salmon, if I'm going to go to all the effort of eating dead animal. I wanted to see my girlfriends. I wanted a cocktail or two. Is that too demanding??

I tried to sleep as much as possible in the lead up to Friday night. But no-go. Just erratic. Sometimes I am just wide awake. Sometimes I'm just groggy. There is no rhyme or reason to my sleeping.

Anyway, Friday night I was exhausted. The bone weary exhausted type. Nothing I can do about it when I get to that state. I cannot fake perky. I'm just exhausted. And I feel really bad about being lousy company as well as making it an early night.

Add to that my stomach was doing the hokey pokey and I didn't even enjoy the salmon that much. *Wry smile*

So on Saturday we head off to Roland's for a BBQ. I've had a bit of sleep, but an hour or two in I am asleep. Sitting in my chair, around the table, fast asleep. Now, if it was a few hours later and I'd had a lot more to drink you can understand the whole fast asleep at a party thing. But no. This was before the sun went down.

I am officially the girl who sleeps at parties. (I then went upstairs and slept on the couch. Cool.)

So after sleeping all day today, it's 1am. And awake. However, I'm tired, and in a lot of pain, so I've just taken some morphine so should sleep okay. Although morphine sleep is always really foggy and groggy and choppy.

Actually, while I'm in whinging mood, I hate being groggy all the time. I hate the effects of painkillers. I hate feeling stupid and cloudy. I hate the concreting effect they have. I hate the fact that I can't drive. I hate the fact that they make me nauseous.

I do like their pain-relieving effects. And every now and again you get a bit of a spin. I feel a bit bad for enjoying the spin but hey, you gotta take your perks where you get 'em. Even if it's a bit sad that your perks happen to be a tax-payer funded drug habit. (I think I should be really careful where I say things like that.)

Sar, I have just had to give a demonstration of "I've got a mallet." Good thing I still remember the dance. Wish I had a mallet. Jason thinks that the mallet song is better than psychological puke because it has a dance to go with it. I pointed out that there is, unfortunately, a dance to go with Psychological Puke.

I am going to start keeping a diary of when and how I've slept, what and when I've eaten, and what and when I've taken medications. Maybe there is a pattern to my wildly erratic sense of well-being.

When I feel okay, I feel good. I am happy. Things are great. If I'm feeling lousy, or tired, or just not good, everything sucks. I am completely at the mercy of the way my body is reacting.

But I really hate being so foggy on pain killers all the time. I really miss clarity of thought.

Hope you are well. So far my goal of posting more often and shorter is going gangbusters!

God bless,

Jess xoxoxox

Just to prove my point about the brain...

2007-11-16T00:37:00.000+11:00

I did forget to mention a fairly major event at chemo on Tuesday.

The psychological puke. The overwhelming nausea for absolutely no reason at all except that I know chemo's coming.

There's even a song to go with it. It's sung to the tune of "Aboriginal me, Aboriginal you, We're not just a people who eat kangaroo" from Indidgeridoo from We Can Be Heroes, the pre-cursor to Summer Heights High. It goes a little something like this...

"Psychological puke, pyschological puke; No reason for it, just the force of a nuke."

Cool, hey.

There's another one on junkie veins, to the tune of Barbie Girl, but we might save that for another time.

I played chess again tonight, and while I lost, it was a fun game. It was really just a case of that looks exciting, and he who made the last mistake lost. (Me.)

Thank you Nik for the reassurance on the chess. There's more to life than a stupid game of chess, anyway.

There is now a link on the right to my photo albums!

Much love and God bless,

Jessie xoxoxo

They call me... Slightly Full of Water Girl!

2007-11-13T18:40:00.001+11:00

Just come back from chemo, about to go have a nap before going to bible study.

Just a quick note to let you know some of the chemo nitty gritty. I am all puffed up like a little waterlogged round furby. They pump me full of water and they pump me full of steroids. I keep taking the steroids and several litres of water for the next two days, so I'll stay nice and puffy. I drank lots of water and had it poured in through my veins for a couple of hours, and after I had processed a litre of it (not a really nice process, having to measure it, but it means I get a private room with private bathroom instead of just a chair in the main area) I had a nap for an hour while the Avastin went in (so a $35/minute nap). Then we had the chemo pumped through, lots more water, then out by about three. So six hours. Then half an hour or so at the pharmacy, then off to Medicare to get some back. Oh, and to buy nice new nail polish to reward Jessie for being a good girl.

Actually, a bit of drama. A couple of nights ago I woke up in the middle of the night in absolute agony up my neck, down my shoulder and into my skull. I got up for a fentanyl lollipop, it was that bad. I got it again today at chemo. We heat packed it, and I lay flat for most of it, and it went away. The Spunky Doctor thinks its just a nerve in my vertebra that's being affected. I would agree.

Had a good chat with the Spunky Doctor - he's very good. Sat down to have a proper chat, not just a quick head in, head out... The tumour in my neck is not as red, and doesn't seem to be getting any bigger, which is a good sign. We'll do one more round after this and then scan to see how it's working. Otherwise the fatigue is pretty normal. A lot of the brain function loss could be attributed to the long term painkiller usage as well. And it's not like I've gone completely dumb just yet. I've still got a bit of fire in the old cooker.

Jason was great as usual - got coffees, and put the bed up, and then down, and then went out to get lunch, and just sat with me and was there with me. It's just nice to have someone there, even if nothing really is happening, even if you're just erading together. It's just nice. I think we are doing extremely well since we spend most of our days and nights together and we're not sick of each other. We probably do get enough time apart and of course we appreciate every second we do get to spend together. It's somewhat reassuring to sit here blogging while at the same desk he's gesticulating wildly at the computer yelling "Why are you donking me on the turn, you mung bean!?!?!" Ah, domestic bliss.

Anyway, just an update... I'm off to bed for awhile!

May the Lord bless you and keep you, let His face shine upon you and be gracious to you. May the Lord look upon you kindly and give you peace.

Jessie xoxoxox

Let them eat cake...

2007-11-12T15:45:00.000+11:00

One of the few good things about not having long to live is that you get to have cake for breakfast and not feel guilty.

And if you're on chemo, chances are that even if you have cake for breakfast, your legs are still as hot as mine. Thus also we see the great joys of premature menopause - all weight gain goes straight to your belly. So that you lose weight from all over (thus the awesome legs), and regain it solely round your middle. You take your wins with your losses. And my legs are pretty awesome right now. Fashion is currently sufficiently crap to be promoting the maternity tent look. Wins all round.

Let's say it together: "Phwoar."

So how am I? Mostly crap. Sometimes pretty good. But mostly crap. Unfortunately my fatigue levels are just enormous. I sleep 14 hours a night, plus a nap if possible. If I get this, I'm usually not too bad. I feel okay, and while still tired, I can get things done. If I don't get this much sleep, I can't function at all.

In a bit of pain, on and off. Mostly in my neck; the tumours there are now visible just by looking at me. Think lopsided hunchback (allowing room for my bad habit of exaggeration).

Actually, just go to http://picasaweb.google.com.au/jessicaannehorton (or click here) to see all the photos I'm gradually putting online. The good news is all the wedding photos are up! The bad news is you know perfectly well how slow I am at doing anything like this... but I am trying... (very trying.)

A lot of the lag has been because this blog needs to be under my old identity as Jessica Disteldorf, which has now changed since I married. Everything (including all the photos) are under my married name and I can't just sync in with my old name. But I do have a solution, but it will take time... In the meantime, I'll just provide the link.

And I think that things have finally settled down for us! The next couple of weeks do not involve any major activities that require lots of planning. I can sleep 16 hours a day and still get the things I want to get done done. And see people.

I had one of those Embarassing Public Display of Emotion a week or so ago. I'm still playing chess every week, mostly as a chance to hang out with my chess friends, but also to feel like I'm using my brain every now and again. Unfortunately, my brain has finally started to feel the results of the (yes, very successful and worth it) stereotactic surgery and whole brain radiation. I no longer have any sign of any brain tumours; it was worth it. But I do have a much reduced attention span, my memory has gone a bit sporadic and I forget words. Like that thing that you put plugs into when you need more plugs. I also have trouble with names. (Actually, that may or may not be true, I was pretty sucky with them before it, but I have an excuse now.) But it is kinda depressing that for someone whose intelligence is such an integral part of who I am and so central to my ego, it's really depressing to know that I'm not quite as switched on as I used to be. And after playing badly in this tournament for the last couple of rounds, I completely and utterly bollocked up a chess game. We are talking multiple passed pawns in a knight endgame, and then losing AFTER I've queened. LOSING, not drawing. And then my opponent told me that he and the guys had been talking about me and how good a player I was. (Emphasis on the was - I used to be okay.)

Now it's been a long time since I cried because of losing a chess game - have I ever, Geoff? Nik? Michael? - and most people present probably didn't get that I wasn't crying because I lost a chess game, but I was crying because four games of crap chess in a row definitely meant that I am losing brain function, not just having a bad run. And chess players, as a general stereotype, probably aren't always emotionally aware powerhouses - as evidenced by the guy who saw that I was crying and immediately left without saying anything - in such a rush that he left his wallet behind. Smooth. (Actually, probably just trying to be tactful. Be fair.) Either way, I made a noodlehead of myself in public and now people think I cry over losing chess games. (Ironically my chess has fractionally improved since that day.)

We are slowly getting settled into the new place. We still have some unpacking to do, but there's no real rush (the spare room door shuts, after all.) We had Em's birthday party here yesterday - and yes, in the city of Level Five water restrictions, it rained, prompting a last minute rush into the carport. But everyone seemed to have a good time, so I will cautiously say that my first foray into children's birthday parties seems to be a qualified success.

Chemo starts again tomorrow. It doesn't seem to be following the usual cycle - once crap week, one immuno-suppressed week and one good week. It seems to be okayish most of the time with every third day or so just feeling completely chemocrap and bone-wearyingly exhausted. But none of the major potential side effects either. It's not really possible to tell whether the fatigue and pain are due to the chemo, the Avastin, or the progression of the cancer itself.

Anyway, I'm feeling much more settled and much happier. My appetite is sporadic, so I'm unfortunately still losing weight, but I have learnt a few things.
1) I feel better and less nauseous if I actually eat something.
2) Rice with soy sauce has the same effect as smith's BBQ chips without the rubbishness.
3) Mi-goreng 2 minute noodles are the bomb. They have no nutritional value, but they're loaded with calories, which is good for not losing weight. Pity they are so nutritionally void.

Unfortunately I haven't yet worked out how to overcome my taste buds' aversion to veges, especially green ones. I think it's time to get back on the juice train. It's very unhealthy to not eat meat or veges. Although if I think about it, I'm still eating a reasonable amount of veges. Just not as much as I would like to be. I might go have a corn on the cob now. Better go now before I change my mind again.

Oh well, it's not like Jason is ever going to need to go out at 3am to get me bbq chips with nutella NOW because I'm pregnant and craving weird food. Actually, that sounds really good right now. I guess this is kinda like being pregnant - constantly nauseous with really weird appetite. But with better legs.

Anyway, I'm also going to try and post more often. Apparently that's the first rule of successful blogging. Post frequently and consistently. Not sporadically and either really long or really short.

By the way, I am gagging to know - who in Israel reads my blog? Please drop me a line and let me know who you are... I'm so curious! (Yes, I have new hit counting software. It's cool.)

God bless you, every one. (Please say out loud in a Tiny Tim voice.)

Much love,

Jessie

Feeling so much better

2007-10-29T21:34:00.000+11:00

With the little help of an immense amount of sleep, I suspect. Averaged about 14 hours a day since Friday.

I have also broken the immense list down into small chunks and will just achieve something each day. Nothing major. Basic organisational skills.

Chemo makes me feel like crap. I forgot for awhile. Chemo makes me feel like crap. It passes.

I need to take it easy when feeling chemo crap. Sleep lots. And it will pass.

But I'm glad I keep a record of the fact that sometimes things suck. I'm really not 'brave and inspirational'. I just get up each morning and get on with it. Actually, sometimes I don't get on with it, I have a tantie. And that's okay.

God had it under control when I didn't... I knew he did :)

Be well.

Much love,

Jess

So completely overwhelmed

2007-10-28T05:10:00.000+11:00

So I've been very quiet for awhile. With good reason. I am so completely overwhelmed at the moment.

I started chemo and the new therapy (which is just another drug, so I tend to refer to it as chemo) again this week. We also finalised the move (well, Jason did) and are trying to settle into the new place. I have an enormous list of things I feel like I should do and I feel pretty lousy because let's face it, I just started chemo again.

The list of things I 'should' do is ridiculous but real. The craziness is getting to me and now that my energy levels are low and I feel sick a lot of the time I am just overwhelmed by it all.

And I feel hugely guilty for not posting more regularly. That's why. I'm overwhelmed at the moment.

I'm having trouble uploading photos as well. Add it to the list.

Please forgive my silence (both online and personal) at the moment. I am trying to keep it together.

I hope things will settle down soon.

I did a full set of CT scans before starting chemo and we are starting chemo again at just the right time. There is a big growth of tumours in my neck (which is physically visible, so no surprises there)and some under my right arm. It has also finally spread to my liver, but still in early stages there. We are hoping that the chemo aspect will shrink and slow the tumour growth and the new drug (Avastin)might kill off some tumours completely. Thus the rush to start chemo.

I hope things will settle down soon and I'll be a bit more human. There just seems to be one thing after another after another at the moment. Any single stress would be manageable, but combined all at once like my life is at this moment is just a bit... overwhelming.

Please keep praying for me. God is truly in control at this point - I admit wholeheartedly that I am not.

With love,

God bless,

Jess xox

Incommunicado

2007-10-12T23:57:00.000+10:00

Off on honeymoon first thing tomorrow morning. Two nights at Maleny and then two nights at Marcoola Beach (scene of the great chess escapade).

More when we get back next week (including the official photos...)!

God bless,

Jess xoxox

That's just the way it is...

2007-10-03T17:50:00.001+10:00

And today I feel brilliant again. Very happy, lots of energy. Enjoying Rach's visit immensely.

Life is like that.

Jxoxox

Warning! The whingy b***** is back!

2007-10-02T13:29:00.000+10:00

That's quite enough sunshine and light. If you want happy lollipops, ignore this post and read the one posted last night, below. It's long and it's happy and joyful and all the rest of it.

Happy Jess was getting boring. Worse, she was getting repetitive. No one else with cancer wants to hear how well things are going for other people.

So cranky Jess is back and she's having a whinge. Please note: I will feel very bad about whinging as soon as I've posted. Please note that happy Jess is my usual state, but I still have cancer so it's important to record the crappy bits of the journey too.

I had a terrible night last night. I have been bone weary exhausted for the past week - real trouble waking up in the mornings, low energy. A day or two ago I also came down onto a lower fentanyl patch, and I'm now going through the worst withdrawal I've had since going cold turkey on pethidine five years ago. This is the first time I've had this sort of problem coming off fentanyl patches (which I've been on and off - mostly on - all year.)

All the muscles in the back of my legs and lower back ache, and I have restless legs - I can't keep them still. I've got terrible fidgets and cannot get comfortable. So I also cannot sleep. I just roll over and over like a rotisserie chicken. And I'm hot cold hot cold hot cold. And it would be so easy to get rid of all of this - a single fentanyl lollipop would make it all go away. And mean that I have to start at the beginning again to come down. So no. I get some relief if Jason rubs the back of my legs, but it comes back as soon as he stops (and yes, he needs sleep too).

And now today, since I had two valium to try to knock me out last night - unsuccessfully - I'm still groggy. I hate this.

However, by tomorrow it should be all over. I hope.

This is one of those times where it's not always easy to see God's plan, but I still need to trust in it. (See, I don't just spout that stuff when things are going well.)

I'm still loving married life. (He's currently hanging out the washing.)

See the post below for a more accurate description of where I am. This post is just a quick snapshot in time - the one below is more of a longer video.

This too will pass.

God bless you.

Jessie xoxox

Brevity is all well and good in its place...

2007-10-01T18:04:00.000+10:00

And Mrs Jessica Anne Horton, signing in...

Very short post, I'm afraid. There is so much to say and I will say it soon, but after a few very exhausting weeks, my body is having time out and I am completely bone wearyingly exhausted. Having trouble waking up in the mornings and then very low energy to get through the day as well. Trying to come down from some pain medication as well.

So as a result I'm hiding out a little - which is why I haven't really been replying to messages or emails. Please forgive me, I really am in a low energy place at the moment. I will get in touch with everyone shortly.

Thank you so much to everyone who shared our very special day - whether physically present or there in spirit! It was such a magical day for us, and I'm so glad we could celebrate it with everyone. There will be a proper update (with photos!) soon. In the meantime, Ben and Sus took quite a few photos and I have permission to direct you to their site...

Thank you also to everyone for the extremely generous gifts. We will contact everyone individually in the next couple of weeks to express our heartfelt gratitude, as well. I would also like to put out there - could the giver of the wonderful Circulon pan come forward? It was the only gift without a card that could not be traced back. It was one of my worries, so I should be grateful that there is only one such gift! (I haven't yet worked out what to do if eight givers come forward at this point...) About half way through the opening of the presents, I turned to Jason and said a little uncertainly "You do like red, right?"

We will be moving in the next couple of weeks into a house in Camp Hill, owned by the wonderful Leukaemia Foundation. In the next week or two we will also be undertaking some serious research into some new drugs and treatments that are available to me. They are still very experimental, which means very expensive, as they are not covered by any of the existing medical institutions here in Australia. If anyone has some free time in the next couple of weeks and would like to help with the research, please email me. Oh yes, I have a new email account, which I will be transitioning to in the next couple of weeks - jessicaannehorton@gmail.com. Disteldorf was hard to spell but at least I was the only one around! Even my mother-in-law is J. A. Horton!

Yes, I have taken on a new name. Ideally Jason and I would have created a new name, but we really couldn't make anything suitable out of Disteldorf and Horton. Distelhor just didn't sound right. Nor did Hordorf. So I am secure enough in my identity to become Jessica Horton. Even Mrs Jessica Horton in my private life, although I will remain a Ms professionally. And Jason has had his thrill - the deal was one "Mr and Mrs Jason Horton" when we were presented at the reception, and he got a bonus when Ian presented us that way at the church. Surname is one thing, first name quite another :) Still, we wanted to keep a lot of the traditional things at the wedding (as well as our own touches - ie red shoes!)...

Anyway, more on the wedding another day... sorry!

Well, for a short post, this certainly expanded... but I think it is time to close here.

I might be exhausted physically, but I am so happy. Truly God blesses me everyday.
And you know what? If, as Sarah Silverman pointed out at the MTV awards (why? why? why? Why does my life seem to have bizarro similarities to Britney Spears? Why? She shaves her head after me, takes the same drugs I do (albeit mine are legal) and now this!) that if at 25, I have accomplished everything in life that I will ever do, then I have done extremely well. Life achievement should not be measured in time (he he dies oldest wins) or material possessions (he who dies with the most toys wins) but in relationships (he who dies with the most friends on Facebook wins). And my relationships are so rich - with God, with my husband, with my family, with my friends. And with you.

(Unfortunately the four Fs have copped a beating lately - my interest in food is way down. On the plus side I have taken advantage of this to become increasingly vegan. I no longer eat any meat, dairy or eggs. Check out the China Study to find out why. (Yes, I know, I know - after over a year of steadfastly refusing to touch anything 'alternative', I have now embraced something radical! But read the book, read the science - and embrace the irony! I like irony. There's certainly a lot of it in my life. God has a sense of humour, and sometimes it's really really twisted. It's cool though. I think I like it.)

Either tell the people about the wedding, Jess, or shut up. No one wants to hear you rabbit on about the same stuff you always go on about.

Oh, all right. I'm in the zone.

The wedding was a magical day. I successfully delegated all the stressful stuff for the final two days (the decorating and the catering) to my incredible Mama, indefatiguable Grandma and amazing aunt Sharyn. Who worked so hard to make it as beautiful as it was. And my bridesmaids were incredible as well. We had a lovely day on the Friday, getting our nails done and a little bit of last minute shopping.

Minor crises early on the Saturday morning. Thankfully I'm so well-known in the hospital system now that I can call, ask for a script from whoever is on call, and then organise for someone else to pick it up and fill it. Unfortunately while asking Jason to find something in the medicine cabinet, he dropped it from its very high height and unfortunately smashed a rather large bottle of morphine, requiring a very thorough clean-up. Somewhat stressful. (If anyone is wondering - I know you read this A! - everything is kept in a locked safe.)

We even managed a nap (well, two of the flowergirls and I did!) or at least 'rest time' on Saturday afternoon after hair and makeup had been done. It's one of the advantages of having hair 'done' without having to have it on your head. Mama, Dave and Dad did all the running around while we just relaxed in the hotel room. (Thank you all.)

We drove to the ceremony in our wedding procession - our little red Getz and Amy's little blue Echo, all done up in roses and white ribbon. Very cute :) Amy and Jacqui drove the three flowergirls, Emily, big Sophie and baby Sophie, and Dave drove Dad and I. When we got to the church, Dave and Wray (Jason's dad) walked down the aisle together, then our brothers walked down with our mothers - four brothers, four mothers. (Yes, we have seven parents between us all.) The flowergirls then led off (their cue was Ian's nod, but there were so many people they couldn't see Ian!) and did beeyootifully, and then the beautifully elegant bridesmaids. Then Dad walked me down the aisle (yes, he got teary!) and it was just magical to be surrounded by all the people I love and who love me, down to the man I will share my life with. We were 'entrusted' (NOT given away!) by eight people - Mama, Dave, Dad, Beata, Mum (Mary), Wray, Jan and Emily, and then lit a unity candle to symbolise the joining of such a large family. Each mama did a beautiful reading as well. We sang two of my favourite hymns - How Great is our God and In His Hands, and Ian spoke so beautifully, as always. The musicians were incredible, and it was just a perfect service. Mama has complained that Jason and I stood so close together that because we're so tall, no one could see Ian - he was just a disembodied voice from behind us! There are some parts of the ceremony that I don't remember as well as the others, but one thing I do remember is looking into Jason's eyes and standing with him throughout the whole service.

It stormed outside during the service and then dried up again afterwards so we had some beautiful backdrops for the photos! Our photographer is phe-no-me-nal - I can't wait to see the finished product! We walked down to Southbank for photos, stopping at lots of places on the way... it was just beautiful. It's fun being in full wedding regalia, with cars honking and people waving!

The reception was just beautiful - literally. It was held in the church hall, and Mama, Grandma and Sharyn (and Grandpa and lots of people who helped out!) had made it into a wonderland in red, black and white. The ceiling was filled with helium balloons, there were balloon bouquets on the walls and fairy lights as well. Plus Mary had converted an entire table into a candlelit fairyland, with beautiful decorated glasses, pottery fairy castles and toadstools! It really was beautiful...

In hindsight we should have put more chairs out for everyone though... And my bustle broke, so I had to contend with a train for the night!

We had a wonderful time catching up with everyone (at least, I hope it was everyone - we tried, I hope we succeeded - please forgive us if we didn't!) and dancing (well, Jason danced his required two dances - very well, I thought!). Daniel and our dads' speeches were beautiful. Unfortunately I keep thinking of all the things I wanted to say in mine but didn't - bad preparation on my behalf! The ABC and Kirsten also put together a wonderful surpise - a DVD presentation of some of the footage they have been taking over the past year and a half. It was beautiful, thank you guys!

All in all, it was one of the happiest days of our lives, and a memory we will cherish forever. Thank you so much for sharing it.

We spent a couple of nights in a hotel in the city. I don't think every newlywed couple gets confirmation within 24 hours that they have married exactly the right person, but we did. On Sunday night, we mused that it was a shame that we would never get to wear our cool outfits again, so decided we really should while we had the chance... and my hair was still perfect, of course! So we put them back on, and went for a trip up to the casino...

I did keep wanting to say 'No really! We're not this sad! We are not at the casino on our wedding night!' but we went down to the poker pit so Jason could do a lap of honour. Various gasps of disbelief from the dealers, pit bosses and players - although some fast thinking from a couple of the players (they are poker players, after all...) It was great fun, although I'm not sure every couple would have seen the humour!

When we got home we found that the flat had been transformed into a fairy wonderland, with all the glasses, toadstools and fairy castles left from the wedding, as well as balloons and ribbons and fairy dust! We haven't been able to bring ourselves to take it down, and we plan to have a permanent fairyland set up in the new house. We are off to Maleny next weekend for our honeymoon.

You know all that stuff about how blessed I am, and how lucky I am to have you all in my life? Repeat it here and I really will sign off.

God really does work great blessings in our lives if we can only surrender and trust in his incredible plans. We are so happy because we have so much in our lives to be thankful for, but at the same time we have difficulties to make us appreciate the blessings as well. May God grant you the same. May you know the great peace and joy that floods your heart because God loves you.

May the Lord bless you and keep you, let His face shine upon you and be gracious to you. May the Lord look upon you kindly and give you peace.

Thank you for sharing this incredible journey. God bless you.

With so much love,

Mrs Jessica Horton (tee hee hee!)

PS I bollocked up my change of enrolment form today by signing the wrong name. I'm trying desperately to get my change of enrolment details form in before the election is called, but I keep running into difficulties!

Crazy chaos, happy memories

2007-09-20T21:25:00.000+10:00

Crazy, crazy, crazy couple of weeks. Crazy joyful couple of weeks.

Missing the Harley rally for the surgery meant that I had recovered enough from the surgery to fly up to Mackay for the following weekend, taking my new family with me. It was wonderful to have them in Mackay - my old family and my new family together.

On Saturday it was Dave's citizenship ceremony. In the morning we decided that the most useful thing we could do was keep out of everyone's way, so went for a drive around Mackay to see the sights. I never actually realised how beautiful Mackay is until recently. Certainly never did while I lived there!

Dave's citizenship was in the afternoon, and it was beautiful. The garden was magnificent - they've worked so hard on it - and it was great to see all of my Mackay friends and relatives, not to mention all the English rels! The mayor came out to conduct the ceremony and the weather was perfect. Now my step-daddy is an Aussie :)

On Sunday my next door neighbours organised four Harleys and four big Harley riders. It was simply one of the best experiences of my life, and a memory that I will treasure forever. Mama, Chelsea (my cousin) and Denise (Dave's sister - my aunt) and I went for a magnificent two hour ride - out to Lambert's Beach lookout, to the harbour and the marina, and then up to the Eimeo pub, where the rest of the crowd met us for a drink. The weather was absolutely glorious, we had the wind in our faces, the sun was shining, and we were a big enough group to take over the road and have everyone watch us as we went by. Fred even took me 'traffic bumping' over the bridge - scary, but oh so fun!

I kept telling everyone how happy I was, and it was true. I think I said it quite a bit - making Mama wonder if I was protesting too much, or trying to convince myself, or just taking too many painkillers - but the truth is it was one of the happiest weekends of my life.

On Monday was Rhona's wedding, which was just beautiful. It was really nice to go down to Black's Beach for a couple of nights and just spend some good, quality time with all of my English rels and have the chance to get to know them a little better.

The following weekend was a big one too - on Friday night Amy threw me a hen's night. All my girlfriends got together, we went out to dinner and then back to Amy's for an evening of girly things - nails and massages and gossip. It was great - some varied marriage advice though!

On Sunday I did something I've been thinking about for awhile - I got baptised. I was baptised as a child, but I wanted a 'believer's baptism' as well. I was in my church, surrounded by my church family, my family and my friends, and I gave my life to God with great joy. Here is the testimony I shared with everyone beforehand:

"I like to think of life as a journey. You get into a boat and travel down the great river of life. Sometimes you encounter rapids, and it can get dangerous, difficult and precarious. Sometimes you go through great stretches of beautiful and happy scenery.

And as you journey, some people get into your boat. Some get out again. Some get in for a long time, some only get in for a little while. Some help you row, some are dead weights.

Sometimes it feels like you can be all alone. Or at least I do. Sometimes I felt like I was all alone in my little boat, being carried along powerless by the current.

The thing I have learnt is that I am never alone. Even if I am sitting all alone in my little boat, being carried along by the current, there is always a glorious presence with me. God is always there. He is there as the boat. He is there as the scenery. He is there as the current, directing the boat. And Christ is always, always sitting with me.

And once I learnt that lesson, life became so much easier, so much freer. Now that I have learnt to trust – to completely trust – the current, or God’s plan for my life, I don’t need to worry every time something goes wrong, or is difficult, or I don’t understand. Just because I do not understand why something happens, doesn’t mean it doesn’t happen for a very good reason. God is the Master Potter, and His plans are flawless. And the freedom of trusting in His great plan means that my life is so free and so so happy.

And even when things are difficult, I am never alone. Christ is always there, by my side, suffering through the same things I do. And He loves me so much He was prepared to die for me. And His great sacrifice takes away the great fear in my life – that of dying. Because dying is just like reaching the mouth of the river. Everyone will get out of my boat and we will have a big party on the beach – there will be balloons, fairy bread and a jumpy castle. And it will be a wonderful party. And then I will get back into my boat, alone, and everyone will stand on the beach and wave madly as my boat heads off to the horizon (with me in the hammock on the front deck with a cocktail). And as my boat slips over the horizon, no one on the beach will be able to see me anymore. But I won’t be gone – in fact, as I cross the horizon, I will catch a glimpse of the shore. And as I get closer, I will see the thousands of people on the beach waiting for me, all waving madly, with an even bigger jumpy castle and an even bigger party. With Christ waiting for me, to spend eternity with me. And while I will be sad to leave this world, the prospect of spending eternity in paradise with my God and Saviour is such a happy one, and one that I am looking forward to so much.

There wasn’t really a point at which I accepted Christ into my life. I learnt a lot about Him during my university years and in the past couple of years I have just grown more and more aware of His presence in my life. And so we get to today, where Christ’s presence in my life – His centralness to my life – is so important to who I am. I am so grateful that God revealed Himself to me, that He shows me His never-ending love and continues to do so everyday."

What a happy couple of weeks.

This week has been a bit chaotic - Mama came down on Saturday to help me and just to be with me and keep me sane, and I'm so grateful she did. She has just had a couple of enormous weeks herself, and is exhausted, but pulling out her last reserves to get through this week too. I'm so very appreciative - this was definitely a week I wanted to spend with my Mama.

And I think the chaos is now over for me - I have successfully delegated all the details that are left and am looking forward to spending tomorrow with my friends, just relaxing. And then on Saturday I will be married to the man I love.

This is Jessica Anne Disteldorf, signing out.

The pandamonic joy that is my life

2007-09-07T09:44:00.000+10:00

So where are we? Last Friday, just going into hospital for this straightforward procedure, right? Okay...

The surgeon went in and found that the cancerous plaque had also invaded the pancreas, not just the gall bladder. So instead of just poking a hole to let the gall sludge and bile and stuff drain away, he put a stent in - a little tube of some very expensive metal. (He says I now carry about three and a half grand in my chest.)

And the five percent chance the surgery will actually cause pancreatitis? Well, I hit it, of course. Pancreatitis. So I was in hospital until Wednesday night, in the end. It does mean that I made the right call about not going to Mackay for the Harley weekend, cause if I had the surgery on Monday, I wouldn't have been able to make it up to Mackay for Dave's citizenship on the 7th.

I spent the first twenty-four hours sick as an absolute dog - they gave me pethidine. I don't like pethidine much, it makes me sick. Give me morphine or fentanyl - fentanyl is my drug of choice. But what would I know - I'm just the patient right? The face that I've been doing this for five years now is irrelevant. ANYWAY, it took over twenty four hours for them to listen to me and get me off pethidine and onto morphine.

Most of the rest of the hospital stay is all blurry - morphine might not make me as sick, but it definitely makes me groggy and stoned and stupid. Very hazy for most of the stay. Jason came every day to spend time with me, Em came on the weekend and Dad Beata and Sophie came every night.

Towards the end of my stay I had finally got the morphine levels right, and then a new nurse came on and started giving me a higher dose. Unfortunately, cause I was so groggy I didn't work it out for most of the day.

Food was crap.

On Wednesday I realised that I hadn't had a blood test that morning (vampires come in at 5am each morning to stick pins in you. One morning it took two vampires and four attempts. One morning it felt like the vampire had just stabbed me with a potato peeler. They definitely vary in skill.) and that if I didn't have blood results for the day, there was no way that the surgeon would let me go home. So I upwardly managed, made the nurses call the surgeon to order a blood test, and got the vampires up. (He'd just forgotten to order it the day before. If I hadn't made it happen I would have had to spend another day.) He came in to see me that evening and said "We need to keep you in for another few days." I said "You ARE joking." He said "Yes, I am." So I went home Wednesday night :)

Which brings me to the next bit of pandemonic joy. I met with James Morton, my main oncologist here in Brisbane before all the surgery started. I also met with a new oncologist, Paul Mainwarring. Dr Mainwarring is working on a new approach that selectively targets the blood supply of tumours and cutting blood flow. He is going to go back to my original biopsy samples from five years ago and run some tests, and I might be a good canditate for some of the new treatments he is working on. So that is very exciting. I'll meet with him again in a couple of weeks to see what he's found.

On a slightly less positive note, the face that the cancer has infiltrated my organs and is causing problems like this pancreatitis and gall sludge is not a good sign. James strongly recommended to me that we bring the wedding forward. NOT because I'm not going to be here in November, but simply because he knows how important it is to me, and it is something I should do while I KNOW I'm healthy enough. He doesn't want to see me married in hospital. He just can't guarantee what sort of health I'll be in.

Another reason for us to bring the wedding forward is if I do start some experimental therapies with Dr Mainwarring, I don't want to start anything new or potentially disruptive to my life until after I'm married.

So... we've brought the wedding forward.

To Saturday 22nd September.

Yes, that's in two weeks.

So for the past week and a half, we have all been frantically wedding planning. And pretty much everything is now in place... or on track. It's been a completely crazy week - planning a wedding in three weeks is just crazy. But we are so happy and so excited - our magical day is now very close! And so much seems to be falling into place and just flowing. (Although a lot of stuff is being pushed into place by Amy, I think - not just falling!) It all feels just right and just perfect - this is going to be such a special day.

And in a couple of hours Jason, Emily and I are flying to Mackay for Dave's citizenship tomorrow. I will stay until Wednesday for Rhona's wedding and Tim's birthday on Tuesday. I am so happy that I'm well enough for this weekend - I haven't been up to Mackay in so long, and I'm really looking forward to taking up my new family to spend time with my existing one! And it will be wonderful to see all the English rellies too!

So as you can tell, my cup runneth over. It is just pouring over everywhere, like Niagra Falls. I am so very happy right now.

Thank you for sharing this journey with me.

May God bless you as richly as he does me.

With great great great love, in great joy,

Jessie xoxoxo

Quick update

2007-08-30T21:47:00.000+10:00

Yesterday I was going to post something along the following lines...

The great thing about my life is how wonderful it actually is. There is a teeny tiny little glitch, but apart from that, everything else in my life is incredible. It totally rocks. And that means that when I do get down about the teeny tiny little glitch, it doesn't tend to last long, because there is so much about it that rocks. So a bit of a think about all the good things, a bit of a bop to my current theme song (Mika's Love Today - highly recommend) and a bit of kissing (hey, I like kissing and he's good at it) and I'm happy again. Very happy.

Blogging like my last post is incredibly therapeutic to me as well. I post my pain, you guys take it on, I feel good again. Of course, it then means that everyone gets in contact being supportive and loving, but you've already done the work - I feel better! Thank you. You'll never know how much having people to listen helps.

Anyway, today's gone a bit custardy, but I still wanted to say the happy things too.

I was supposed to fly up to Mackay tomorrow for a couple of weeks. Saturday is a big Harley Davidson rally, and my neighbours had organised for me to go. I have been looking forward to it for months. Anyway, long story short, my pancreas and liver are not improving - they are getting worse. There is more sludge building up, so we need to do something. I'm starting to get a little bit of pain, and I could have put it off till Monday, but chances are it will flare up and get bad, so I'm just biting the bullet and going in for surgery tomorrow. So no Harley rally. I am SO SO SO disappointed. It was a really hard call.

Anyway, the procedure I'm getting tomorrow is fairly straightforward - even if it's name is not! Stereotactic radiosurgery has officially been superceded! Tomorrow, I am having an endoscopic retrograde cholangiopancreatography/sphincterotomy. How kickass cool is that. It's more commonly known as an ERCP :)

It's just a camera down the throat and into the digestive system, then poking a hole to let the sludge drain away. There's a 5% risk that it will actually cause more pancreatitis. That's why I want to get this done asap - so that if I do get pancreatitis I can get over it by next weekend, when I go back to Mackay for Dave's citizenship and his sister's wedding.

But really it's a very straightforward procedure, not major surgery at all. Chill. If it wasn't for the Harley it would be no big deal at all.

Anyway, going back into hospital tomorrow. Will hopefully be out either tomorrow night or more likely Saturday.

Thanks everyone. You make this journey so much easier.

Thank you all for your prayers. Gill, I love the thought of your lighting candles in the various places you travel. That is beautiful. Beautiful enough to balance my levels of 'Get Jealous'ness. Thank you. And I'm glad God listens to prayers in non-exotic locations as well :)

With much love,

Jess xoxox

Wish I hadn't whinged about being a housewife.

2007-08-26T17:03:00.000+10:00

And thus the neverending cycle continues... I'm back on the inside. Again.

On Friday I slept all afternoon so I could go out with Amy that evening. I had (shock horror!) four whole cocktails. Admittedly, two were dodgy $5 Cosmos from Fridays (yes, Jacqui, I went to Fridays... shudder), but the other two were a top quality margharita and a midori splice. Unfortunately the four cocktails made it seem like a good idea to eat some dead animal. Actually some dead cow and dead pig. And I haven't eaten dead animal in over a month. And possibly steak and ribs was a bit ambitious for a first attempt back. (It was so much easier when after a few drinks you just went to Maccas.)

Anyway, I was home by ten thirty. Bit of a tummy ache, and a guilty conscience about the dead animals, but this is a fairly normal price to pay for a night out, so I'm led to believe. Two am I'm in agony. Four am I decide if it's indigestion it's really bad and probably worth the trip into the hospital. At 6am I officially have pancreatitis.

At 8am I have pancreatitis and 'your liver is completely rooted. Most people I see with counts like that are dead'. Oh, and gallstones.

Saturday night was our engagement party. They morphined me up and let me go for a couple of hours. I'm sure I was a brilliant, sparkling hostess. Couldn't drink anything, couldn't eat anything with fat in it. Including engagment cake. It was a bit of a surreal night after a very stressful day. Amy had stepped up to the plate, driven to Caboolture to pick up the cake, spent the morning cooking and getting the apartment party-ready. Jason had been up all night with me, and then spent the day cleaning the apartment. I hope everyone had a good time - we were a bit stressed, and probably not great hosts. It was lovely to see everyone though, and the fireworks were fantastic. (Yes, we had fireworks for our engagement party. Brisbane City Council and the Ekka think that our engagement is worth celebrating. As do we.)

Sunday I think I have gallstones, not pancreatitis. I forget. Monday the diagnosis changed again. Either way, I keep hearing the words 'your liver is absolutely rooted' ricocheting around in my head. Fully expecting to die of liver failure before the end of the week.

Sunday night I learn a very important life lesson. Never, ever, EVER, when completely stoned out of your cracker on morphine, read Hitchhiker's Guide to the Galaxy. It will send your brain zooming through the improbability drive to another dimension. I was up all night because my brain was doing the macarena.

On Monday night I finally see a surgeon. By then they've stopped letting me eat food, but haven't told me why. I'm hungry, sick of the four walls of my room and slowly getting more and more irate. The surgeon came in and said not really sure what the diagnosis is - I don't have gallstones, but i do have gall sludge (so appealing). I do have pancreatitis, caused by the gall sludge. My liver counts are all off the charts, and would need to improve A LOT before they can operate on the other two.

I was quietly getting into a bit of a state by the time the surgeon got around to seeing me and just quietly, I had a bit of a tantrum. Yelling may have been involved. Nurses may or may not have come running to make sure no one was being killed. My doctor may have come back asking if I was going to throw something at him. So I'm not a nice person. So being hungry doesn't suit me.

But it does mean that they realised I was not happy about being shut off in a room for days on end without someone looking into my case. The plan? Starve me. If I don't eat food for a few days, then the pancreas won't have to work and will stop being inflamed. Then, if the liver counts go down, they can whip out the gall bladder.

Interestingly, I slept for nearly 24 hours aftter my tantie. Just needed to vent? Or an interesting insight into patient management by the hospital? You be the judge.

Tuesday through Friday we wait and see what the pancreas and liver do. Oh, no food. Free fluids only. I hate soup. I hate jelly. I especially hate orange jelly. The Mater Private only makes orange jelly. Even red jelly would have made me happy. I do quite like apple juice though. And I went downstairs for a milkshake every day even though they were, let's face it, disgusting. But not as bad as soup - or sorry, hot salty water.

Every day I get a happy visit from the phlebotomist at 5am. Blood suckers. Some I can sleep through. One morning one woman came in and it felt like she stuck a blunt potato peeler into my arm. The next morning she came back, and couldn't get a line in after four attempts (and a go by a colleague). Good morning sunshine.

Friday is operation day! My pancreas is still a bit inflamed, but the CT shows it's okay. My liver function is still high, but has been coming down each day at a 'normal' rate. Let's go ahead.

I love the moment before going under in a general anaesthetic. Most people hate it. It's a great high. I love medazzlum. Pity it only lasts a few seconds and then you're unconscious.

Wake up feeling pretty good. Hey, I'm alive, aren't I? (I've been a bit paranoid since Susan died on Gray's Anatomy after a simple surgery.) I don't remember waking up in recovery but I do remember being back in my room with Jason, and being so happy to see each other.

I ask how it went and his Face turns Serious. He says that didn't take it out. Minutes later the surgeon comes in and confirms that they didn't take out my gall bladder. My gall bladder has a layer of cancerous plaque all over it. (I'll try and scan the pictures in... even though certain people say my insides look really ugly. I don't know about this 'out of the mouths of babes' thing.) Either way, can't take it out - can't get cancerous bit everywhere, too risky.

So... what does this mean? Honestly, it's not great news. Still have gall sludge. Hopefully it will go away and stop blocking up the pancreas and causing all the pancreatitis. Unfortunately possibly will come back because I still have a gall bladder. This means being careful about diet. No booze. No fat. No fun. It also obviously means that my organs are not in great nick.

It's Sunday now and I was discharged this morning. With caveats. After improving for the past several days, my pancreas got worse overnight. (Lipase results on Saturday of admission - 15000. Normal - 100. Yesterday - 80. Today - 400.) So I have to go back tomorrow for more blood tests to see what it does tonight. Don't think doctor was game to make me stay in hospital.

Six months ago it was a lot easier to accept the fact that I'm dying. It's a lot harder now. More than anything I want to live to share my life - my whole life - with the man I love. I've created memories with so many people - my family, my friends - and I'm so sad to leave you all. But to leave Jason, right when we're starting out on our lives together? When we have so many plans? This is one of the happiest and one of the most heartbreaking times for me. I want more than anything to live right now. I want more than anything to be able to keep sharing this journey with the man I love.

Lord, please let me live. Let me share this journey with my husband.

Please pray for me.

Jess

The lucky man himself...

2007-08-07T18:42:00.000+10:00

Cancer, cancer, yeah, yeah, yeah... somewhat otherwise engaged...

2007-08-01T15:11:00.000+10:00

Jason thinks I should just start calling him TNF and then TNH and see if anyone notices... (I figure you're all smart enough to work out from my last post that TNM's name is Jason...)

So, I left Brisbane believing that my cancer was growing back somewhat more rapidly than hoped after the chemo. That said, my PET scan showed that the cancer is limited to the lymph nodes in my neck and an adrenal gland in my stomach somewhere - no spread to my lungs or liver or any other organs, and the big news is that there was absolutely no uptake in my brain - which means that the stereotactic radiosurgery and all the whole brain radiation was worth it! Hurrah! No motorbike, but no brain tumour either... all in all, a reasonable trade-off. (Although in Brad's book, tearing up $50s by a full moon would also have been a reasonable trade-off.)

But the downside was that after only two months post chemo the lymph nodes in my neck were not only huge (big enough to be felt) but painful as well. It was TNM's first Serious Face Conversation with a doctor, and unfortunately the comment 'once you start having symptoms it will be a matter of weeks' did not pass him by...

However, I have heard many such non-positive things from several of my doctors here in Brisbane who do not know much about my cancer. There is only one doctor who has done the research and spoken with overseas colleagues and can knowledgeably pass comment (although he is often reluctant to). The fact is, what I have is just too rare to make predictions like how long - everything from here on is pure extrapolation.

Anyway, the point is we went to Sydney to talk to the doctor who knows the mostest. And he looked at the scans and said that it was fantastic that there was so little growth everywhere else. And that in fact, the growth in the lymph nodes and adrenals was not actually that fast, it was progressing quite normally, he was happy with that progression. Further, there are more options to treat this growth - there have been some advances in chemo delivery in the past couple of years so there are new options for me (oral Etopocide and weekly Taxol). More importantly from my point of view, there is no rush to do the chemo - I don't think I could face more chemo on top of the radiation side effects. Chemo can be done in a couple of months when I'm starting to experience some real problems.

So where am I? Growth of tumours is normal (stupid word). Not too fast, but not as slow as we would obviously like. I am still having some radiation after-effects - I'm very tired and sleep a lot (if there's no stimulus to wake up, I will naturally keep sleeping till 10 at the moment). Plus my poxy hair fell out again and is giving no sign that it is planning on growing back. In and out of pain from the lymph nodes, so on and off pain medication. Which kinda sucks. But no need for more treatment for a couple of months, or until I start having more problems than just a bit of fatigue and manageable pain. So I can just enjoy the next couple of months.

Which is a good thing, because something else happened in Sydney as well...

Jason has asked me to be his wife.

The last couple of months have been one of the happiest times in both our lives. Neither of us is a believer in love at first sight, but as Jason said when he proposed, he believes in a few things now that he didn't a couple of months ago. Our connection has been so strong from the very moment we met and has only strengthened and deepened as we fell in love. And we know that we want to spend the rest of our lives together, however long they might be. (Longer is better, as a general rule of thumb though). To meet the man I want to be with at such an unlikely time is more of a blessing than I can possibly describe. Truly God looks into our hearts and sees our innermost desires and prayers.

So many people's first reactions has been to say what a wonderful thing he is doing. And yes, it takes a truly strong and amazing man to love me and stand by me and share this tumultuous journey. But as he says, he's not doing this out of pity. (His language is slightly stronger and slightly more outraged at the suggestion.) He is so happy. Being with me also makes him happy. As he says, he's doing this out of selfish reasons. He already thinks it's been worth it.

And that's the greatest gift he's given me - not that he's going to marry me, or that 'he knows what he's getting himself into' or any ridiculous pity notion - but he believes I still have something to give. It wasn't the fear of being alone that really scared me (how can I, with the Four Fs behind me - I am already so blessed) but the fear of no longer being able to love, support and contribute to others. I still have plenty to give. I still have a tremendous capacity to love. And now I have a man strong enough to receive and return that love. I have a partner on this journey.

And Jason comes complete with another blessing - Emily. Jason has a beautiful six-year old daughter. She's gorgeous, affectionate, feisty and has an attitude to match her daddy's (part of the reason I fell in love with him...) To be part of such a family is so much more than I dared to dream would still be open to me.

I am so very happy. And so blessed. And so quietly thankful. Truly we might not always understand God's plans at the time, but he is the Master Potter, and his work is breathtaking. We just need to trust in him and his plans. And I am so thankful that I did. His blessings in my life are so rich.

Thank you for sharing the troubled waters of my journey. I hope you'll join me on some of the more beautiful scenery and serene waters as well!

May God bless you as much as you bless my life.

With so much love,

Jessie

A little something to keep you going while I'm away...

2007-07-18T14:46:00.001+10:00

Here it is at last. A belated, long, but hopefully worth it account of the long weekend on the Sunshine Coast that I delayed surgery for. You be the judge. More when I get back from Sydney.

Much love, as always.

God bless,

Jessie xoxox

Operation Recreate Caloundra

Dramatis Personae:

Jacob : The quiet powerhouse. Part den mother, part logistician extraordinaire. Silently, from behind the scenes, will make sure everything is going well and no one is about to pass out in their own vomit. Also the only one able to control Regina.

Regina : Alpha female, organiser, maternal funster. Determined to wring fun out of every moment. Keeper of the chess pieces. Likes to make sure everyone is getting as drunk as her. Agree with her, keep her happy and have a blast.

Michael : The dark horse. Quiet, conservative, considerate. Pour the plonk down his throat though and see the inner party animal roar into life. Can actually dance. Plays too much chess though.

Bruce : The only person whose chess improves the more he drinks. Regardless of how much Regina puts in front of him. Life goal is to steal the Crown Jewels though. Plus he plays too much chess.

Raquel : Bruce's mysterious girlfriend who turns out to be gorgeous AND intelligent and thus skyrockets Bruce's cred. Fantastic addition to the group. Fails to curb Bruce's appetite for chess though.

Jessica : Nice quiet submissive girl with no opinions of her own who is always happy to go along with the wishes of the crowd. Assumed presidency of Bullwinkle via a bloodless coup. Prone to sardonic observations, understatement and the occasional outright lie (see above). Love/hate relationship with chess. For some reason has no hair. Gets the longest character description, although some of it was rubbish.

Jason : Random blow-in. Keeps Jessica quiet. Still working on submissive.

******

Scene 1: Friday
Michael is picking up Jessica. Unfortunately there is no room left in Michael's boot for Jessica's luggage.

Jessica (shaking her head): No way dude. You have not packed that enormous suitcase for only three days.

Michael (giggles sheepishly): But, but, it's got a pillow and three pairs of shorts!

Jessica : Oh dear.

Michael and Jessica drive to Bruce's to pick up Bruce and Raquel. Meet up with Regina and Jacob. All depart. Michael, Jessica, Bruce and Raquel stop so Bruce can go back for his camera. All depart again.

For some reason go to Mooloolaba. (Author was asleep in car when decision was made.) Alcohol is purchased. Some debate about how to get to destination.

Bruce is navigating while Michael drives and all cars do a scenic lap of Mooloolaba. Finally find highway. Regina and Jacob keep taking random exits off said highway. Finally find Marcoola beach and hotel. Hurrah!

Luggage is unloaded, with various personal comments. Michael has brought a small country and Jessica refuses to be separated from Winnie the Pooh.

Check in occurs and the group travels up to the room.

Jessica retires to her room to have a quick emotional breakdown.

Others run around apartment scoping out the rooms, the view, the rooftop terrace and the enormous 8 person spa.

Jacob : We need to go grocery shopping.

Jessica : I suggest that only one or two people go with a list.

Jacob : I agree.

Regina : No, I think everyone should go.

(Intense debate over individual versus communal groceries.)

Regina : I think everyone should go.

Jacob : But then we have to take two cars.

Jessica : Why don't you all go in one car and I will stay here and get over being weird.

Jacob, Regina, Michael, Bruce and Raquel go grocery shopping. Jessica goes to beach and almost freezes solid. Comes back still weird, but improved.

Scene 2: Friday night
Michael consumes glass of wine. Chess is played. Michael consumes glass of wine. At some stage someone suggests distracting the chess players and an unholy alliance between chess and suggestive ear nibbles is born. Michael consumes glass of wine. Drinking game is played (bastardised version of the one from cocktail party a few weeks back). Good quality vodka is consumed. Michael consumes glass of wine. Others also consume alcohol, but let's face it, focus is on Michael and his bottomless glass of wine. Michael has consumed bottle. Michael is officially drunk. For the first time in his life.

Michael : "Hey, I'm drunk!"

Michael : "I didn't know it was this good!"

Michael : "It's like you still know what you're doing, but it feels good!"

Michael : "You guys are amazing!"

Michael : "This is amazing!"

Michael : "Hey, I'm drunk!"

Regina : "Hey Michael, dance for us!"

Michael dances, surprisingly well.

Chess ceases and everyone retires up to the spa. And by retires I obviously mean everyone does a mad sprint up the stairs in the freezing cold and dives into the warmth.

Jessica : "Michael, wake up."

Foot massages occur in spa. (Well, there may have been other types of massages, but the foot ones were the only ones author was privy to.)

Jessica : "Michael, you can't sleep in the spa."

Mathematical discussion about size or shape or sexual preference of the universe occurs. Not entirely sure of outcome, author tunes out of the maths talk.

Jessica : "Michael, drink more water."

Jessica realises she has officially turned into Michael's mother.

All characters leave spa until eventually it is only Regina and Jessica. Jessica has stupidly wet her hat and then thrown it out of spa and is losing body heat, fast. She spends ten minutes saying "I'm getting out now" and then does the frigid dash downstairs. Jacob and Michael are playing chess. Not very cool.

Regina is very cold and has large quantity of good quality vodka in system. She develops genius idea of putting head under water for long periods of time to stay warm, in between little naps. Thankfully manages not to combine the two activities. Eventually retires downstairs.

People sleep.

Scene 3: Saturday
Some people get up early to watch sunrise. (Author oblivious.)

Some people go for walk. (Author oblivious.)

Stupid mother****ing heater in author's room does not work. (Author cold.)

Bloody Michael feels fine. (Author's head hurts.)

Bruce cooks barbeque on rooftop terrace. Lunch for most, breakfast for author. Love the steak for breakfast concept.

Jacob and Jessica go out on a church hunt. They buy a cake. They also buy some little cakes, but they cunningly eat them before they go home. Jacob buys milk.

Regina is making coffee. Jacob has bought the wrong milk. Jacob goes out again to buy the correct milk.

Chess is played (probably).

Scene 4: Saturday night
Some people, much to Raquel's relief, declare that too much chess has occurred and crack open Balderdash.

Jessica and Jacob dominate the board. Jessica gets to be the black knight. She is totally awesome. (In case you haven't worked it out, Jessica and Author are the same person.)

Word of the night: Distelfink.

Jacob : "Oh Raquel, yours was my second choice."

Regina : "Oh Raquel, yours was my second choice."

Michael : "Oh Raquel, yours was my second choice."

Bruce : "Oh Raquel, yours was my second choice."

Jessica : "Oh Raquel, yours was my second choice."

Raquel : *Line has been deleted from script.*

Jessica wins. She really is awesome. Balderdash is an awesome game, not like that ridiculous chess game. Jessica is crap at chess.

All retire to spa. Regina is not left unsupervised.

People sleep.

Scene 5: Sunday
Stupid mother****ing heater in author's room still not working.

Author cold. Gets up at five am to move to lounge where heater is working (excuse being to watch sunrise). Unfortunately Bruce and Raquel have similar idea and author has disturbed romantic moment. Author falls asleep and hopes that romantic moment can continue – snoring body in corner should add to atmosphere, not detract. Author is warm. Catches some of sunrise.

Jessica goes to church.

Bruce, Raquel and Michael go to the beach. Jessica and Regina dress up like snow terrorists and follow. Jessica and Regina stalk girl who looks like Raquel but turns out not to be. Jessica and Regina eventually find them and do their best to sunbathe in the dead of winter.

Jessica returns to apartment. Jacob dresses like snow terrorist and goes to beach. Jason arrives.

All return to apartment. Lunch is had on rooftop terrace. Jessica has a guilt attack and gets out ABC camera to continue documenting her life. Jessica feels better.

Chess is played. (A safe bet for when author does not remember exactly what happened.) Someone comes up with unique concept that since Raquel and Jason think chess is rubbish, they should play each other. If you can't beat 'em, join 'em concept is unfortunately squashed by both parties. Jason is initiated into transfer. Decides it is crap after missing a queen mates plonk. Bad workman always blames his tools.

All go out to dinner in Mooloolaba. Michael is creative navigator. Again. Good thing he can dance.

All go home. Michael and Regina get into some serious dancing. Michael has been drinking again. Decides he wants to play chess. Bruce agrees enthusiastically. Regina has had enough of chess and has been hiding the pieces. Regina comes up with cunning plan to prevent Michael playing chess – he can only play with Bruce if he can first beat Regina. Regina confident her skills and Michael's drunkenness will deliver her a crushing victory. She is wrong. Michael and Bruce play chess.

Some people go up to spa. Very romantic. Author does not kiss and tell.

People sleep.

Scene 6: Monday
Stupid mother****ing heater still not working in author's room. Author did not notice.

Cleanup operation begins. Check out occurs. Final trips to beach occur.

Jason and Michael drive home. Michael stalks Jason the whole Pacific highway. (It means he doesn't have to navigate.)

Jacob, Regina, Bruce, Raquel and Jessica go for drive up to Maleny and rainforest. Drive good. Stop at French restaurant to purchase foie gras dismal failure. Stop at fudge shop to purchase fudge rip-roaring success. Lunch relative success. Drive to rainforest.

Jacob, Regina, Bruce and Raquel go for walk to rainforest. Apparently good. Jessica sits and gets monstered by mosquitoes, then sleeps in car. Good.

Jacob, Regina, Bruce, Raquel and Jessica drive home.

All pass judgment on Operation Recreate Caloundra.

Jacob : "Ma Cool'ah Vice. Doesn't quite have the same ring to it, methinks. Still, it was nicely displaced."

Regina : "A weekend to kill ya!"

Michael : "Wow! That was so amazing!"

Bruce : "Not enough chess."

Raquel : *Line has been deleted from script.*

Jessica : "Worth delaying life-saving brain surgery for."

Jason : "It seemed quite warm and friendly to me."

Curtains fall. No encores.

And back to bounce again

2007-07-16T10:00:00.000+10:00

Plus ça change, plus c'est la même chose...

And thus it is a rollercoaster. Last week I was feeling fairly ordinary physically, and this week I am feeling good again. I succumbed to the pain and went back on a low dose fentanyl patch last Thursday. Saturday I was due to change it, but was in no pain so didn't bother. It's now Monday and I'm still in no pain, so I am officially back off the painkillers again! And feeeeeling good.

I did a CT last week which found some lymph nodes in my neck were up. I did a PET scan on Friday, which was a new experience! They injected me with a radiactive glucose and then put me in a little darkened room by myself while I was radioactive. I couldn't read because it would stimulate my brain and thus affect the uptake of the radioactive dye. But they gave me a valium to relax the muscles and I quite happily slept for the hour (I can sleep in a MRI machine; a bed in a dark room with valium in my system is very much a doddle). I then went to lie in a machine for half an hour and it was all very straightforward. No results from it yet.

The main result from all these tests? It's time to go back to Sydney to talk to my doctor there. He is the only one at the moment with the overall knowledge of my case and the cancer expertise. My doctor here in Brisbane is fantastic but he is a haemato-oncologist and my cancer is outside his sphere of expertise. He can give me chemo and refer me on to specialists, but this is not his field. I can and will get a new specialist here in Brisbane but for the moment it is just easier to go to Sydney.

So the good news is I will be in Sydney this weekend! We are arriving on Thursday so I can go to Life Force that evening - and yes, we does indeed mean that TNM is coming too, and will be available for grilling. We will be holding court at the usual place - cocktails at the Swissotel on Friday night. The appointment with the doctor is at 3.30, so hoping to be back by drinks time on Friday. I am trying to call everyone to invite you all, but if I don't, please consider this your invitation to come and have a drink on Friday night!

So I am well again, feeling very good, and hoping to see you all on Friday...

God bless,

Jess xoxox

Back to bleugh

2007-07-05T20:18:00.000+10:00

It had to happen. The happy, blithe, healthy Jess who strides into radiation every day with a smile has been replaced by the more subdued, tired and in pain one. Stupid cancer.

I am starting to feel some of the effects of the radiation. I am tired - very tired. And a bit light headed whenever I stand up. And much as I don't want to admit it, I am a bit more spacy and have trouble concentrating on my book. I realised the other day that I hadn't actually read a book in over a week - I have been tending to go online and read articles and blogs and such - things that require less concentration and dedication. So I started the latest Philippa Gregory and I seem to still be able to read okay... which is good, given that Harry Potter comes out later this month...

And I'm having a little bit of trouble with my right collarbone at the moment. Hoping that it is just a muscle or ligament problem, since all of my neck muscles are still pretty much seized up after the vertebra issues last year. I am having an ultrasound tomorrow to find out.

The pain in my collarbone was bad enough last night to warrant a morphine lollypop though. So the final State of Origin game was definitely a bit surreal. I giggled through the first half and slept through the second half, and couldn't focus or concentrate on the game at all. Morphine is like that. But I don't like taking morphine unless I absolutely have to, and the pain has definitely been managable today. So keeping it minimal.

I have been speaking at a couple of Leukaemia Foundation functions lately. Mostly thank you functions for the Shave for a Cure fundraisers. I took TNM to a corporate drinks function a couple of weeks ago, and one of the reps from one of the top fundraisers chatted him up. Quite openly too, when I came over she suggested that there were plenty more fish in the sea for me and that perhaps I should leave that one for her. Honestly, who chats up the sick girl's man? Does anyone else see anything wrong with this picture?

Interesting lesson in inelastic demand in the past couple of days. (Yes Jacqui, I too am transported back to Hawken lecture theatre and the chocolate muffins. And the MORONIC tutor with no idea.) I had been given an estimate of my stereotactic radiosurgery before I went ahead with it, and it was quite a significant figure. But, you know, life saving brain surgery right? And who really needs a motorbike, anyway... To get the bill yesterday, and find that somehow that figure had doubled, was somewhat of a shock. I queried this with my doctor today, and she rang accounts, and I think that the figure will go back down again with some facet of Medicare. (Plus she chewed them out for not calling me before the surgery to make sure I was well aware of all of these hidden costs.) I still need to find out the final details. But the question is, would I still have gone ahead with the surgery if I had known upfront just how expensive it was going to be? Now, if it was curative surgery, if I was going to go back to 'normal' (stupid word) and healthy and 'fixed' then absolutely; what price health? But for me it is merely a delaying tactic; putting out another fire. On the other hand though, death by brain tumour would be very unpleasant and something I am trying very hard to avoid. So yes, I think I would have gone ahead with the surgery anyway.

Interesting issue, this one. What is the best way to die? Death by brain tumour is something that fills me with dread, and thus it was a complete no-brainer to seek treatment for it. (Tee hee hee. Not very funny.) The chemotherapy, however, was primarily intended to attack the cancer in my lymphatic cancer. Death by cancer in lymphatic system is comparably quite easy, however - become increasingly tired, sleep more and more and more and eventually keep sleeping. By undergoing chemotherapy, and it being quite so successful as it was, it probably means that at a later date the cancer will return somewhere else in my body. And probably won't be as 'easy' a degeneration as the lymphatic cancer. But on the other hand, the chemo has definitely bought me more time.

So what do you think? Is more time now worth a more unpleasant demise later? Or should I have gone for the easier option at the end?

I think you're all worth spending the extra time with. I've made my call. And thus I will continue fighting each and every fire as it burns. For now.

Yeah, I know. I always get a bit maudlin when I'm tired.

It's been a bit of a heavy post, but I'm still very happy. Very contented. Life is still good. Spending lots of time with family, friends and TNM. I am very blessed. In the great scale of crap to good stuff in my life, the good stuff wins. (Eloquent, wot.)

God bless,

Jess

Cancerous Dating, Radiation and Everything Else

2007-06-25T12:50:00.001+10:00

Cancerous dating - no, fear not, I am not about to start spouting vitriol about my ex. Quite the contrary. In case you have been blithely ignoring all my subtle-as-a-sledgehammer hints, there is a new man on the scene! Yes, indeed, that is what those references to dates and kissing means. Who knew!

Now, some internal turmoil about how much to reveal here. This is a blog about cancer, and the Pussycat Dolls, and anything else that happens to be on my mind, but primarily about cancer. And I have to be honest, there are some unique aspects of dating with cancer. So perhaps these should be documented? Then again, it all gets a bit reality TV if I start documenting my relationship online. Then there's the whole issue of how online personas can get you into trouble down the track.

Regardless, I do need to come clean about why I seem so indifferent to this round of treatment (much more interesting things on my mind). You remember the cocktail party I wrote about six weeks or so ago? It really was a very good night... The New Man (TNM), when confronted with one final strawberry and four ladies each with a glass of champagne all looking at him expectantly, made the correct decision, and the rest, as they say, is history. (We will ignore the later incident with the pizza. Strawberries trump pizzas.)

So rather than being preoccupied and depressed at the (admittedly rather crap) prospect of a brain tumour and all the subsequent treatment, I have been enjoying the euphoric high of a new relationship - the calls, the text messages, the dates, the flowers, the butterflies (of the tummy variety, he has strong views on animal ethics). The brain tumour is a mild irritant at worst at the moment.

So who is he, what does he do, etcetera etcetera? Let's leave him his privacy, shall we? After all, just because I choose to document my life, doesn't mean he should expose his. (Besides, he reads the blog too, you know, and then he would find out how amazing I actually think he is.) But he makes me laugh - and isn't afraid to poke fun at the cancer thing - and I definitely love the fact that he challenges me intellectually!

But yes, dating with cancer definitely poses some interesting problems. But, as TNM has pointed out (yes, emotional maturity too) maybe the issues that we had to confront early are still there in other 'normal' (stupid word) relationships, they just tend to be more hidden. It is an interesting dynamic when the scary question is no longer 'what if it doesn't work?' but 'what if it does?'. And it does pose ethical questions - how much information to disclose and at what point? There is a fine line between deception and too much heavy stuff too soon.

A couple of people have unkindly asked "Does he know exactly what he's getting himself into?" And yes, I think he does. He is a highly intelligent, emotionally mature adult and he has thought through most of the implications and is still making the choice to be with me. Apparently he agrees that I still have something to offer, and that it is perhaps premature for me to go and sit in a cave by myself until I die. (The premise behind the cave thing is, I presume, to stop getting close to people so that they won't get hurt when I die. I would like to think though, that if I actually went off to live in a cave, people would miss me anyway, and I would be as good as dead. So why not stay and make memories with people?)

Anyway, we are trying to tread the fine line between making sure we address these issues and not over-analysing and just enjoying the time we spend together. But I am very happy, and this is a particularly joyous time for me.

And now that I officially sound like a lovesick schoolgirl, let's talk about boring cancer stuff.

Dad, Beata, Soph and I went to the Wesley on Wednesday morning to start radiation. Unfortunately, no one there had thought to call down to Sydney to get the records of my last radiation treatment to make sure they weren't over-radiating anywhere, they hadn't booked me into a machine and the doctor hadn't arrived yet. So in the end, no radiation took place, although they did mold me a mask and did some preliminary scans.

Thursday morning radiation started properly. I need to be honest - after weeks of not expecting radiation to be particularly stressful, I did lose it when radiation actually started. I was bolted down into the machine (via facemask rather than actual head bolts this time - big improvement!) and then it all began. I wasn't expecting to be able to feel anything - I never have before. But there was a really bright light which made my eyes water, and a feeling similar to the one when you get dumped by a big wave - a huge flood of something rushing past your face and in your mouth and up your nose. It wasn't quite chlorine or salt water or antiseptic - but a flood of something of the sort. Anyway, it was a bit of a pathetic panic - I didn't move or anything, but I got the surge of adrenaline and worry that constitutes panic. I've done it another couple of times and it's better now that I know what to expect, but still a bit off-putting, I guess the word is.

Still, I'm feeling fine - perhaps a little bit more sleepy. I slept till 11am the other day - solidly through till 11, not dozing. Which is, believe it or not, unusual for me. Amazingly, I don't sleep all morning and then watch Oprah for the rest of the day. It clashes with Jerry Springer. But then again, I'm not expecting to feel any effects for a couple of weeks yet!

I am getting a little paranoid about brain function though. It seems to be working fine - I even proved it in Friday's Sydney Morning Herald - but I am starting to get nervous about repeating myself or forgetting things. It's also hard to tell if people are just toying with me... And it's not nice, people. Yes, TNM, that means you. And you too, Reg. But my vision is still perfect and I think my brain is still in good shape. Ask me again in a fortnight though.

I am getting a little paranoid about brain function though. It seems to be working fine - I even proved it in Friday's Sydney Morning Herald - but I am starting to get nervous about repeating myself or forgetting things. It's also hard to tell if people are just toying with me... And it's not nice, people. Yes, TNM, that means you. And you too, Reg. But my vision is still perfect and I think my brain is still in good shape. Ask me again in a fortnight though.

I am getting a little paranoid about brain function though. It seems to be working fine - I even proved it in Friday's Sydney Morning Herald - but I am starting to get nervous about repeating myself or forgetting things. It's also hard to tell if people are just toying with me... And it's not nice, people. Yes, TNM, that means you. And you too, Reg. But my vision is still perfect and I think my brain is still in good shape. Ask me again in a fortnight though.

Well, I thought it was funny... And at least with the new article I am unlikely to sell out completely in a couple of years. Not unless TNM can rustle up a tower decorated in Jessie-red with a well-stocked library and a herd of antelope nearby.

I went to see a lawyer last week as well. And ended up with some guy who didn't shake my hand and couldn't look me in the eye. If he is going to charge as much as he is for 'professional services', then he should at the very least be professional.

In the meantime, I am enjoying spending lots of time with Beata and Sophie. Sophie is at a lovely affectionate age and it's so good to spend some good, quality time with her. Poor Beata is feeling a bit taxi-like though - I'm not supposed to be driving in case my brain explodes or something (the very presence of a brain tumour suggests the possibility of a seizure - this is the only reason I can't drive, everything else is working fine) and we do need to drive all the way out to the Wesley every day! Still, it's good to spend some time with them.

So at the moment it's radiation every day for the next three weeks, with weekends off for good behaviour. And enjoying good company the rest of the time.

By the way, you all had a narrow escape last night. Three cocktails and a rather death-filled episode of Gray's Anatomy meant that I got a little maudlin and thought about posting. Thankfully the three cocktails kicked in and I went to sleep instead.

My life is so blessed at the moment. God is good. May he bless you as much as he does me. May he grant you the strength to get through the day and the serenity to enjoy it. May you know his great love and peace as you journey through each day.

Much love to you all.

Yours joyfully (what do you know, I do listen during Ian's sermons!)

Jessie xoxoxo

Frankenstein's Monster

2007-06-14T18:53:00.000+10:00

Well, it's all over, and I probably didn't need to worry much about it at all. I think it's just the whole fiddling with my brain concept that I was worried about. Ironically, the three weeks radiation that I start next week is more risky, but because I've had radiation twice before, and the effects will be slower, I'm not as concerned. How strange.

So Dad and I arrived at the Wesley by seven, to find that the cafe wasn't going to open until 7.30. No coffee for Jessie. No preliminaries, the neurosurgeon, radonc and two nurses march me into a CT room, sit me in a wheelchair, tell my father to leave the room and launch straight into things. Four people all doing things to the top of my head just outside of my sphere of vision, and none of the things were pleasant. Basically, pumped me full of local anaesthetic, which is unpleasant in itself - you are not meant to inject into the head. It feels wrong, not to mention stings and burns like buggery. They then drilled four holes into my head (up against my skull, so through the skin but not through the bone), put in screws, screwed them in tightly and put this thing in.

Doesn't look or sound pleasant? It wasn't. But at least it was all over quickly. They then took me into a CT machine and bolted the contraption onto the bed. I was actually very worried about this bit, since most positions involving my neck tend to make it ache quite a bit. (Even kissing a man taller than me, although I tend to put up with that pain a little better.) Anyway, off topic - the suspended in mid-air by weird frame screwed into head was not as bad as I'd feared. And again, it only lasted ten minutes or so. They took a full set of scans of my head and then went off to develop the actual treatment plan.

The worst bit of the whole day was sitting around for seven hours with the contraption on. In a small room. Unable to lean my head against anything and thus rest my neck. But if the worst bit of an operation is the waiting, you are doing mighty fine.

Eventually, at about three, they took me back into a room with machinery and bolted me back onto the table. The actual treatment was just like a radiation treatment - think x-ray machine that moves around you while you lie on a table - and took about half an hour. So completely non-invasive and pretty unthreatening. Although I confess I kept opening my eyes to make sure I could still see. Mild paranoia.

Afterwards they took the gizmo off again - which hurt nearly as much as putting it on. Releasing that pressure to the skull feels exactly like increasing pressure to the skull. But again, if that was the worst that it got, I am doing very well!

I even got a Brave Wounded Soldier Bandage to make sure people gave me love and sympathy (well, for 24 hours, I'm not walking around with that on my head!)

I went home completely fine, feeling good, bit of a headache perhaps, but even managed to go out for hot chocolate with Amy.

So actually feeling a bit of a fraud - it was hardly an operation and I feel a bit guilty at the fact that everyone called to wish me well and then called to find out how it went! It went very well, I feel completely normal :)

Radiation starts on Wednesday... more to follow!

The (Far More Interesting) Plan!

2007-06-08T09:04:00.000+10:00

Well, I'm off to the Sunshine Coast today...

I love window-time. And this window-time is proving to be fantastic! The whole brain tumour thing seems kinda surreal... it doesn't actually seem possible that next week I'm going in for surgery and then radiation.

Anyway, that's something to think about next week!

Thank you for your comments, as usual... I feel a bit guilty that I have no real news for anyone at the moment, but if I'm going to start feeling guilty about feeling good, then there's something very wrong with this whole setup!

Now, as MJ has so astutely pointed out, my surgery falls on Marshall Ledbetter Day, and I hope that we are all getting excited about the opportunity to commemorate Marshall's great feats. I know that the Palace has an exciting activity planned... and if I wasn't otherwise occupied with the seriously funkily named stereotactical radiosurgery (I just love to say it, I think I will enjoy undergoing it slightly less), I would definitely be in Sydney celebrating it with you! (Google it, folks.)

Be well, enjoy your long weekend (I know I will) and there will be more news of the more dramatic kind (well, let's hope not too dramatic!) next week!

God bless,

Jess xoox

PS Gill, I hear you've been taking tips from Russell?

The Plan!

2007-06-01T16:44:00.000+10:00

Let's have a moment of vain introspection here. What is my best feature? Is it my eyes? My lips? My hair? (Not at the moment.) How about my breasts? It's certainly not my stomach. (It's nice that I have such a healthy, over-inflated ego that I can actually list a number of possibilities to answer that question.)

It's actually my brain, I think. My brain is that glorious organ that lets me read, enjoy conversation and engage in (occasionally) witty repartee. It lets me write this ridiculous nonsense. It lets me have an ongoing dialogue with my conscience, whose name is Parenthesis (I've worked out that that's who I'm talking to every time I open a bracket). And, if you want to get really fernickity, it keeps me alive.

So, the plan is up! I saw the neurosurgeon on Wednesday, the radiation oncologist on Thursday and the stereotactical radiosurgeon on Friday (today). Now that is a cool title, and I'm going to use the words stereotactical radiosurgery A LOT. You have been warned.

The neurosurgeon says that we can do surgery if we need to, but to keep it as a last rather than a first resort. He said that I'm probably a candidate for stereotactical radiosurgery though. (Don't worry, I will explain what it means eventually. I just like to say the words lots.)

The radonc (radiation oncologist - in this case, the shorter version is cooler. Go figure.) said that while we can radiate the tumour exactly, we are better off also radiating the whole brain as well, to prevent growth of any new tumours.

The stereotactical radiosurgeon (actually, I think she's just a radonc who happens to work in stereotactical radiosurgery. I don't think they are really called stereotactical radiosurgeons. Although they should be.) said that if it's just an isolated tumour, then stereotactical radiosurgery is a good option for me.

So what is stereotactical radiosurgery? Read the link, this blog is only really for the interesting stuff. Basically, it's a one-day procedure. They will bolt a frame into my head (yes, that's the really yuck bit) and then take a bazillion scans, then map out the exact location of the tumour, target it, then shoot radiation precisely at it from all angles using advance computer somethingorother. And then take the frame off my head again. I will be completely fine again the next day. One day brain surgery. What's not to love?

A week or so later I will then start whole brain radiation, which to be honest is the one that scares me more. It will be a low dose of radiation to the whole brain over three weeks to prevent the recurrence of any more tumours. It will have the usual radiation side effects - fatigue, hair loss (after I've spent the past month growing it too - typical), redness, maybe some nausea. These will all go away after a month or two. There is also a risk of some long-term (and permanent) effects - about a 25% risk. This might mean that I would lose my ability to concentrate for large periods of time and also some short-term memory loss. Good thing I have my name tattooed on already, really. And I'm sure someone will remind me who Amy is.

Jess: This cereal is fantastic! What is it?
Mama: Apricot Fruity-Bix.
Jess: It's amazing! I'm going to remember this one!

(Next day.)
Jess: This cereal is fantastic! What is it?
Mama: (Sigh.) Apricot Fruity-Bix.
Jess: It's amazing! I'm going to remember this one!

Yes, I'm very nervous about the possibility of the permanent side effects. The certainty of the problems I would have if I didn't treat the tumour worry me more though.

I am feeling really positive about this. I think this will be good. Well, not good as in enjoyable, but good as in effective. I just have a good feeling about it, and I really like my new team (I'm now out at the Wesley for all of this).

I am going in for surgery on the 14th June. It was supposed to be the 7th, but I am going up to the Sunshine Coast for the long weekend with a big contingent of people and we are going to 'recreate Caloundra' (a trip from several years ago) and have an amazing weekend. We have rented a penthouse apartment with eight-person spa and rooftop terrace. There may or may not be some alcohol consumed. There will definitely be conversation, witty repartee and some great company. It will be good. So I put the desire to have fun over the desire to have tumour removed and delayed the surgery for a week. How much damage can one little lump do in a week? This is my post-chemo holiday and celebration. I'm going to have fun, dammit.

Anyway, I am feeeeeeeeling good. Loving my window time.

So that's the update, and that is the Plan, folks!

Thank you for the review on the Secret, Amanda!

Take care of yourselves...

God bless.

Much love,

Jess xoox

Shout the good news, spin the bad...

2007-05-29T15:52:00.000+10:00

At the end of all this, I think I'm going to go into politics. I've spent a week trying to work out the best way to spin this news. If Therese Rein needs a spin doctor, someone let me know. If not, there's probably still a market for it in the Palace with the corgis...

So, the good news first! And it is good news. Just because I have a bit of bad news does not mean I don't get to celebrate the good news.

It was all worth it! The months of nausea, pain, dislike of chocolate and all the rest of the chemo bleughness was all worth it. My scans came back last week and the results were better than anyone expected. All tumours in my system have shrunk - the scans can only pick up a couple of tiny tumours in my lymph nodes - about 6mm in size. There is only one tumour left in my adrenal system, and it's 13mm - again, tiny. So chemo has been a glorious success, much more successful than expected by anyone. Hurrah!

What are the implications of this? (Especially since there are still tumours, albeit small.) I have been looking forward to what I affectionately term my 'window' for a long time now - my window is the time that everything is normal, I can go back to work and be nice and normal (got to stop using that word, it doesn't mean anything). I'm in window at the moment. Window does eventually end when I require new treatment or when the cancer actually starts manifesting itself. The fact that chemo has been so successful means that the window should be months, if not years, which is much longer than I was expecting. Hurrah!

Shall I just get the bad news out of the way? I know you're waiting for it, so there's no real point harping on about how good the good news is. Maybe I'll harp some more after we've got the bad news out of the way.

Just over a week ago I started getting some really bad pain. It started in my chest, it felt like it was in my ribs. Went to see the doctor, couldn't find anything wrong. (Actually, we ruled out all of the really bad stuff - blood clots, pneumonia etc, and if it's not really bad, it's not that important what it really is.) Pain then moved to my neck the next day, then to the left side of my face, then to my forehead and eyes. When it finally moved up to my forehead and eyes, it became completely excruciating. I was physically sick the pain was so bad. So we toddled into hospital.

When doctors have absolutely no idea what's wrong with you, but it looks really bad, they tend to admit you for 'observation'. I think this is largely so that if you die, you die while being observed in hospital, so it looks like they did something responsible instead of sending you home. Apparently it's really bad if they send you home and then you die.

So I lost the argument and got admitted into hospital. Actually the hospital was full, and my doctor kicked someone else out of bed so that I could have her bed. It did mean that my bed wasn't ready until about 10 o'clock at night, by which time my mother was so tired and furious that she nearly completely lost it. (They had sent me home in the meantime, which kinda defeated the whole purpose of admitting me, surely. But what do I know.) Oh, and they also did an MRI of my head (again, trying to eliminate all the really nasty stuff, like blood clots).

Next morning my doctor rocks in, with his Serious Face on. Now, my doctor doesn't do the Serious Face thing very often. Previous conversation with doctor went more like this:
Me: No, I'm not coming into hospital. I have a hot date tonight.
Dr: Ooh, a hot and steamy date?
Me: No, it's too early for such things! What kind of girl do you think I am?
Dr: Jess, you probably don't have much time left. You really should be making it a hot and steamy date...

And yes, you vultures, of course I disobeyed my doctor's orders! (So I'm a difficult patient...)

Anyway, I digress. Back to the Serious Face conversation. On the plus side, they can't find any cause for the headaches (as I explained before, this is good news. It means nothing bad is causing them). So I can go home again. On the other hand, the MRI did show a new tumour in my left occipital lobe. Very small, about 13mm - the size of a chickpea. (Also the size of a marble, but I like chickpea better, it sounds more squishable.) Not big enough to be causing the headaches, or causing any problems at all yet.

The good news? We caught it really early while it's still really small and before it starts growing into important stuff and causing any damage. This also means that we can get rid of it - radiate the sucker and take it out. THIS IS TREATABLE, folks. We CAN do something about this one.

Unfortunately, my chemo regime doesn't really penetrate into the brain, so the chemo would have had no effect on it. We didn't know we needed it to at the time.

Oh, come on, how did you think this post was going to end? The promise of bad news with the mention of headaches and MRIs... it was an obvious an ending as a Mills & Boons novel (I even managed to mention rumpy-pumpy half way through. Not bad.).

And the headaches? Well, they're long gone now. They've served their purpose - they made us do the MRI, which found the tumour, which because we've caught it early, we can now treat and get rid of. So thank you, Lord, for sending the headaches. I do have some suggestions for improving efficiency, however. If we hadn't bothered with the new tumour, we could have avoided the headaches and thus the discovery of the new tumour. Just a suggestion, though, I'm sure your way is much better in the long run.

So what does this mean? Practically, it means I'm still in Brissie, and looking to stay here for a while longer yet. I have meetings with neuro-surgeons and radiation oncologists this week to discuss what we'll be doing. From what I understand, we'll radiate, then operate, then radiate some more.

If we can get this sorted out, then my window should be nice and long indeed. In the meantime, I am enjoying a nice window time, and then I will look forward to post surgery and radio window again.

Mama has gone back up to Mackay anyway, even though I'm not joining her now. She was getting to the point where she definitely needed a break, and she needed to be with Dave and Tim and to potter round the house and to feel normal again (oops, used that word again). So she's gone back up to Mackay. She did a truly amazing job, being the primary driving force getting me through chemo. She was there at all times, bullied and nagged me into eating when I didn't want to, making sure I bothered to get out of bed each day, and managing to make each day bearable, and most days enjoyable. 'One flat white and a serve of cinammon toast on turkish' is proving to be quite a lonely phrase. 'Two' sounds much better.

I want to share with you a conversation I had with my beloved Mama a couple of weeks ago at breakfast. This is why I love my mama so much and why I couldn't have done chemo without her.

Me: I feel like a great sucky octopus, just leeching off everyone and not giving anything back.
Mama: Don't be ridiculous. I wouldn't be here if you were an octopus and neither would any of your friends. You still manage to give lots back.
Me: (Tearing up) I wish I had woken you up in the middle of the night for you to say that instead of stewing on it for three hours.
Mama: You great silly moo.

So I'm staying with Dad now, and with Beata and Soph when they come back from Polond in a couple of weeks time. The changing of the guard, as it were. (For months Sophie has been asking "Jessie, why do you not live with us anymore?" and getting upset whenever I go home. I spoke to her on the phone the other night, and she seemed a bit put out that I was now sleeping in her bed. Can't make an omelette, you know...)

I don't mind radio and surgery so much. Radiation is just a daily visit for a couple of weeks, and this time it won't be accompanied by the pain of last December. Surgery, scary as the thought of someone drilling into my brain is, is still not too bad a thought for me - I have recovered fast and well from all my surgeries. So, while I can't say that radio and surgery are less 'invasive' than chemo, they are less 'life-impacting', if that makes sense. I have a quiet certainty that this is all fixable, anyway, for what it's worth. (No, that's not me 'being positive', it is just an intuitive conviction that this is just a glitch.)

So, spin aside, how am I really feeling? I'm not really sure. I've gone a bit manic since Mama left - I am constantly 'doing' something, I will never sit still and think. And that's kinda impressive given I'm not working. So maybe I do need to sit down and think about it and maybe (heaven forbid) get a little upset about it. Maybe. Maybe after I actually see all the relevant specialists and find out what's happening. In the meantime, I'm having a good time Cleopatra-ing.

Speaking of blind positive thinking, can someone please read The Secret and email me a review? I refuse to read it on principle - I don't read or listen to anything that promises that if I do this or that, then I can cure my cancer. (Okay, I read the Bible, but its promises are a bit more eternal than that.) However, my roommate in hospital last week recommended it, and I find it much harder to diss 'think positive' comments from fellow patients than I do from perky and vapid sales assistants. But I should know what I'm talking about when it comes to the latest 'think yourself healthy' nonsense. So if someone could email me a review, please, that would be wonderful.

So overall, the news IS actually good. Chemo has been a rip-roaring success. I am enjoying a great window of social activity (come on guys, I've made a couple of references to 'dates' now, you do the maths. A lady doesn't kiss and tell, you know.). If I must have a brain tumour (and it appears I must), then we have caught it early and we can treat it and get rid of it. After we have fixed that little glitch, I can enjoy what could potentially be a very long and happy window.

How was my spin? It's bloody hard to spin anything involving the words brain tumour, I'll have you know.

Life is good. I am blessed.

May God bless you as much as he does me. (Perhaps minus the brain tumour, obviously.)

Thanks for being part of my chemo journey. Welcome to the next leg of the trip!

With much love,

Jess

PS. In answer to your question, the left occipital lobe affects the vision. Maybe start practicing your reading out loud skills, just in case.

Party party party...

2007-05-14T13:10:00.000+10:00

Just a quick post, I'm afraid... Just letting you know that my silence is due to a surfeit of enjoyable activities rather than a prolonged period of misery for any other reason. Certainly makes a nice change!

Have had lots of visitor swarming into Brissie - Troy and Debbie came down last week and I spent a fantastic couple of days with them. Adam came down for a wedding so I spent an evening with him. Saturday night I went to a cocktail party, and Sunday I discovered the hidden powers of anti-nausea drugs when combating after effects of said cocktail party. (Yes, I know that's not what they're for. One should always take one's perks where one finds them. Don't get preachy.)

And I have finally worked out the ultimate way to describe chemotherapy! Chemo is like having a perpetual hangover. You are extremely tired... nauseous... the thought of some foods will make you violently ill, but you crave other, probably inappropriate foods... while chemo does not provide you with flashbacks of embarrassing things you may or may not have said last night, it does provide flashforwards of unpleasant things that may or may not happen to you in the future. But I have to say, you get a lot more love and sympathy from the chemo. So you see, I was simply conducting research to better describe the chemotherapy experience. Plus it was a bloody good night.

I got my picc out on Friday, so chemo is officially over! I actually got to HOCA, and my doctor said "no, we'll leave it in for another week". So I organised a mutiny with all the nurses (I had a wonderful megalomaniac nurse who likes to pull out piccs. Makes her feel like a surgeon). Eventually I told the doctor I had a date and that I couldn't possible go with tubes in my arm, so he relented. And called out from across the waiting room "I hope you score!" I'm sure the old dears in the chemo ward think I'm a terrible hussy.

Scans next week to see how effective it has all been.

Anyway, that's my good news, chemo is all over, so instead of sitting at a computer whinging about my life, I'm busy going out and having a good time! So short post today!

Thank you all for supporting me through what has been quite a difficult time. Your continued love and support is what makes this journey not only worthwhile, but happy as well.

May God bless you as much as he does me.

With much love,

Jess

Six from six!

2007-05-04T12:40:00.000+10:00

I highly recommend you stop here and go make a cup of tea. Or a margarita. This will be long. You have been warned.

So let's kick off with Sydney. Top trip. It was really good to go down and just feel normal for awhile. Not that I really know what normal is anymore. But I digress.

I stayed with Jacqui for the first few days, then with Brad, then with Rachel. Kinda passed around like a puppy, really. I flew in on Thursday afternoon, and traipsed out to Annandale to gatecrash the support group. Which, if I'd looked online, was not on that week. So then off to Jacqui's. Jacqui went to work on Friday, but had the afternoon off, so we did a spot of shopping before retiring to old faithful, the Swissotel, for the usual cocktail activity, followed by the usual duck down in Chinatown. Very agreeable. Over the weekend we went into Leichhardt for italian and gelato, but Brad sent me home again when he found out I had a cold. So we watched movies instead (again, very agreeable).

On Monday I caught up with an old college friend, Sarah, who moved to Sydney a couple of months ago. It was great to see her. That afternoon I was booked in for a dressing change out at Westmead hospital, and rang to see if I could organise a blood test too.

Now, normal people get colds. They say 'oh, I have a cold. What a drag.' People like me get colds. They say 'oh dear, I seem to have a cold. Better get a blood test to make sure that I have enough immune system to fight this so it doesn't turn into pneumonia and kill me.' Life could be so much simpler.

Anyway, I had enough immune system. What do you know, just a cold. Actually, the first time I've caught anything while on chemo, which is an excellent effort.

Monday night we went out to dinner for Nathan's birthday - absolutely pouring rain. I love Sydney.

Tuesday through till Friday I was staying at Brad's. Lots of movie watching - Brad even improved my mind with some 1970s Australian politics - and trips into the city to catch up with various people for lunches and coffees. It's quite nice being a lady wot lunches.

The last weekend I stayed with Rachel, and discovered the sheer amount of reality skanky rubbish that is available on Foxtel. To be fair, I also discovered how much food porn there is too. I love Nigella. We also went out to Milson's Point for brunch in the sunshine on Sunday, which was lovely.

Basically, my trip to Sydney gave me the chance to really spend some time with people there. I was feeling pretty healthy, I was definitely feeling pretty healthy, and it was a good trip for me, soul-wise. Thank you to everyone I got to spend time with. And thank you to Jacqui, Brad and Rach for bringing me down. What a superb birthday present.

Oh, and my mobile phone went completely kaput at one point. Started sulking and refused to receive text messages. So if you did text me while I was in Sydney and I did not respond, that is because my phone went berko. I apologise profusely.

Palace-dwellers... I have a present for you.

Her name is Restructure. She will need feeding every six months or so. Please keep her away from Russell.

And now onto this week!

On Tuesday I had my final ever chemo! I say that, and people look at me askance and say 'ever'? To which I say yes. It is highly unlikely that I will put myself through that again. Not to mention that it is highly unlikely that doing so would achieve anything. So there.

It's a slightly rougher chemo this time around. There was a bit of a stuff-up which resulted in one of my drugs being left out of the mix for the past three cycles. They intended to leave it out of the third cycle, but forgot to put it back in for the following two. So my last couple of cycles have been a bit easier than the first, but at the same time, they have probably been less effective. Not great. So anyway, the drug is now back in the mix, and I am feeling correspondingly crap.

But I should only feel crap for the rest of this week or so, and then I should start to heal and get some mojo back. Let's hope so.

In the meantime (whinge alert!), my bones are all burning, I feel like a stoned slug, and my mental processes have been put on slow play. I am hoping that my brain will turn itself back on again in the next couple of days. Never again will I tell a doctor that I have a 'parallel universe going on in my head'. Last time I said that I was on schizo pills for months. It is just a momentary surrealism. I am choosing to ignore signs that say 'Pregnancy Newsagency' (apparently it was pregnancy massage). I am choosing to ignore all the pretty patterns I see that are made up of knight moves. And the highly surreal chess game I had last night? All part of the process. Next week will be better. (Although I reckon there could be a market for a pregnancy newsagency.)

Interesting sidelight (on one of my favourite topics - and no, for once, I'm keeping schtum on that one) - on Tuesday morning, after weeks of feeling fine, before heading off to the hospital for chemo, I started puking. In the lead up to chemo, before any drugs have hit the system, I am nauseous. Go the psychological puke! In fact, by the time I got to the hospital, I was singing my new song 'Psychological puke, psychological puke' - to the tune of Indigeridoo from We Can Be Heroes. And I need to tell you, it is very hard to sing and retch simultaneously. You would think that knowing that the only reason you're puking is psychological would help, would maybe even stop you puking. Nope. It just makes you feel REALLY REALLY dumb.

So what's next for me? Well, I'm here in Brisbane till the end of May or so. Then I will go up to Mackay to 'convalesce' - the sort of thing rich but sickly ladies would do in that brisk mountain air in Switzerland. Either way, I need some time to come down off some of my drugs, regain some aerobic fitness, learn how to climb a flight of stairs, get some energy back - basically, what my doctor terms 'get my mojo back'. After that - who knows... I have some ideas, but I do not need to make any decisions for a little while yet. So there.

Evelyne, thank you for sharing your journey with me. I give thanks for you and your time on this earth, and I pray that the next part of your journey is one of great peace and joy. I pray also for your family as they adjust to life without you. Au revoir, Evelyne.

A largely factual post today, but I do have some exciting plans for this blog coming up in the future... so watch this space.

Much love,

God bless,

Jess xoxo

Some photos!

2007-04-18T17:47:00.000+10:00

Here are a couple of photos from Ben and Susan's wedding...

I am hoping to get some proper photos of how I actually look now (ie bald) rather than keeping the pretty pretty races photo up. It's like posting a glamour shot on a singles website. Underpromise and overdeliver....

Just some questions...

2007-04-18T17:28:00.000+10:00

How do stupid people get sick in this country? How do you deal with the hospital, the pharmacy, the x-ray clinic, Medicare, health insurance and all the other bureaucracies preying on sick people if you're stupid? I am not stupid. I have two degrees. I have no idea what's happening most of the time. I just hand over my credit card and sign on the dotted line.

I paid my hospital excess at the beginning of the year when I went in to have a port put in. As you know that operation failed. A couple of weeks ago I got a call from that hospital saying that because the operation wasn't a success they were refunding my excess. The fact that I still had AN operation, and was still in hospital seems to be irrelevant. Then the other hospital where I have chemo, who had been asking for excess for weeks (interestingly, a different amount than my acutal excess) and who I had been telling I'd already paid it, sends me a bill for three different things that made no sense - but funnily enough adding up to $500 - my excess. I took the bill in and asked them to explain and they had no idea. So I paid it anyway.

Great news at the pharmacy though! I've reached the safety net and all my drugs are free for the rest of the year! I am happy. But then I have a quick look at the form they're about to send off, and ask about the limit - I thought it was a bit low. Turns out they decided some time in January that I had a health care card. I'd queried them when my drugs got cheaper and was told that it was because I had a 'chronic' condition. But they put on my file that I have a health care card. So the chances are now good that they will ask for the backpay on all my drugs. $25 by over 60 prescriptions - you do the maths.

Of course, I am actually eligible for a health care card - IF I go to Centrelink and tell them all about my income and everyone who buys me dinner and how sick I feel on Tuesdays and everyone I snog and how often I poop. To be honest, it's worth the couple of thousand each year to not have to deal with Centrelink. Cancer patients are bludgers who rort the system too, you know.

So how do stupid people get sick in this country?

And my next question. Sounds simple, but there is really only one person I can ask, and she is very busy and it's a bit stupid to call your surgeon to ask such a dumb question. However, it is a burning question.

Do I have a cervix?

Not that I even know what a cervix is or what it does. I asked my doctor here and he says he has no idea (whether I have one, he probably knows what it is and what it does), but it's a question no one has ever asked before.

I am off to Sydney tomorrow and very much looking forward to it.

Love you all,

Jess xoxo

Out of the woodwork...

2007-04-15T16:43:00.000+10:00

Wow.

This is what's missing in so much of life. Real sharing and love. This is what happens when you make it okay to be vulnerable and actually share your pain. People respond. And you do understand. And I'm not alone.

For the past few days I've been really good, actually. I have re-remembered something that I actually know quite well, I was just ignoring in all the wallowing. Happiness is being content with what you do have. Unhappiness is being discontented with all you don't have. At no point is the situation any different. This is what I believe is at the heart of so much malaise in society. People are so focussed on what they don't have that they forget to look at what they do.

Thank you to those who came out of the woodwork to tell me I'm not alone. Thank you to those who read my blog and quietly called just to say hello, to show me I'm not alone.

I don't really have words to tell you what it means to me. So let that be evidence enough of how touched I am. Ultimately I have to travel this journey alone. But it helps that I have a full caravan of support vehicles.

I found a brochure for a support group here in Brisbane. It was an eight week course, and they wanted $320 for the course. $320 to talk about yourself and do a bit of meditation. That's $40 a session. Blogging is free. Instant talking about yourself. You guys rock, you are a great support group. (They also wanted women with a 'positive' diagnosis. $40 to talk about yourself and the fact that you're already going to survive. Sheesh.)

There is something I want recorded for posterity but at the same time I don't really want to share with you guys. It is definitely an overshare. But it has been my sole waking thought for the past couple of days and as such needs to be recorded as part of the cancer journey.

Poop is like health. You don't really miss it or even think about it until it's not there. And if it's not there, then you can't think or do anything else. Unfortunately, with poop, it's still there. It's just not going where it's supposed to be going. It just sits there, making you as sluggish and as stupid as a stoned hippo. And about as fat.

It's very easy for a doctor to say "Well Jess, we've given you enough drugs to constipate an elephant." (Quote.) Have you ever seen a constipated elephant functioning in normal elephant society? Well, it's not possible. There is only one thought, and it's quite a depressing, humiliating one. "Must... poop."

(Yes, you rude buggers, I have had success.)

See what I mean? Definitely an overshare. But oh, such a big part of the chemo journey!

Yes, hi to all my colleagues, and everyone at church. Oh dear.

I have gone back to feeling blessed for all the good things in life, and less focussed on the giant buttocks. It is normal to be sad about things, but it is not my whole life. I reserve the right to be sad sometimes, and not feel bad about it. I will also share it more often. And I also reserve the right to be happy too. And I reserve the right to chop and change between the two and all the grey in between as much as I bloody well want to.

This round of chemo has actually been quite good - very little nausea, very little bone pain and now that my little problem has gone away, it should be quite smooth for my trip to Sydney next week. So much of my well-being boils down to the three Ps - pain, puking and poop.

Pussycat Dolls are on tonight! My Dad actually bought round a radio so that I could listen to Radio National. I think he thinks I'm rotting my brain. He's probably right.

Thank you again.

May God bless you as much as he does me.

Jess xoxoxo

Some random thoughts

2007-04-11T16:21:00.000+10:00

My first instinct here is to apologise for the last post. It's an instinct I'm going to resist. Just as I've resisted the instinct for the past several days to log back on and either take down the post or put something else up.

I'm trying to share the whole cancer experience. Not just the funny stuff. And I have to be honest, there's a lot of bad stuff as well.

There's a lot rolling through my mind lately. So this is an unstructured post, just to share some of the things that I think about.

I nearly died today. I was in the hospital getting a bag of fluid because I need to drink a lot after chemo (which happened yesterday) and I can't do it alone, some anti-nausea drugs and an injection to make my bones burn. The nurse put a burette up to allow the anti-nausea drugs to drip through and forgot to make sure that the bag of saline was reconnected. About twenty minutes later another nurse from across the room noticed that it wasn't dripping at all. The original nurse came over and started it going again, and then spent ten minutes removing the air bubble from the tube. The same air bubble that if left unchecked, would have gone into my veins and aneurysed me. Not really sure how I feel about that. A bit weirded out, actually. Ten minutes more of no one noticing (including me, I should say), and that last poxy post would have been the last one for posterity.

I suggested to another nurse yesterday that it would be funny to find the stash of sicky bags (see down the bottom of the page link for a picture - amazing invention. So much more civilised than a bowl that you then have to peer into while waiting for the next heave.) and prick them repeatedly with a pin. She was, probably quite understandably, horrified. I don't know why my mind thinks such things. Probably an attempt to hide from the pain.

I bet every comedian has a deeply depressive side.

Lemon meringue pie vomits up really well. Not as well as water, but that doesn't really count. Pineapple vomits up the worst so far. So acidic.

My dad asked me last night what it is I want from life. So here it is. I want... to get married and have kids and a house and choose schools and worry about them and renovate and go to work and spend time with my family. I want what so many people look at in their lives and think "is this it?" I'm trying to make decisions as to what to do with the remaining years of my life. And people keep telling me to do what I want, to do what makes me happy. But what I want is not an option anymore. So it's not a question of doing what I want. It's a question of doing what would be least worst. Because this path is not what I would have chosen.

I should have pointed out in my last post (and would've, if I wasn't too busy wallowing in misery) that I am not in fact alone, no one is ever alone. God is always with me, God is always there to share my pain. But sometimes it's so easy to lose sight of that. Jesus is just not physically available for hugs. It doesn't mean he's not there though.

And I'm trying to see that God does have a plan for me. And I know he does. And I just need to be open and willing to embrace that plan. But sometimes I'm scared that the best thing I can do with my life is die and teach others about death and life and love. And that scares me.

I've realised that a lot of God's promises - his joy, his peace - will probably now be fulfilled for me in the next life, not in this one. And on one hand that is wonderful - it means I'm not afraid to die anymore, and sometimes I look forward to the release. But on the other hand, it is so deeply saddening - I am losing so much of my child-like faith that no matter what happens in life, I will always be happy, that there will always be good things.

Sometimes I just feel like I am floating on my back in the great toilet that is my life, waiting for the next great pair of buttocks to appear above me and shit on me.

Yes, I have actually spotted that I'm depressed. In fact, I've been mildly depressed for weeks now. I only got really depressed when I realised that I was depressed. That was a very depressing moment.

So let's look at all the wonderful things in my life:

My mama, without whom I don't know that I'd even bother sometimes. She does so much for me that I feel bad for even being depressed. I love her so much.
My brother Ben, who calls me "the sun that illuminates all else".
My brother Tim, who is in teenage world, and speaks mainly in grunts and monosyllables, but who called me on my birthday and spoke for nearly an hour.
My dad, who asks the right questions when I get lost.
My step-mama, Beata, who would do anything to make me feel better.
My sister Sophie, for having so much love in her for me that she can't express it and has to make monkey noises.
My step-dad, Dave, who let me cry on his shoulder on the weekend. And would do so every day of his life if that is what I asked.
My Auntie Annette, who loves me so much.
My aunts and uncles and cousins.
My grandparents.
My friend Amy, who has my name tattooed on her arse. (She also watches the Pussy Cat Dolls with me.)
My friends Brad and Jacqui, who are bringing me down to Sydney next week.
My friends Rachel, Michael, Jo and so many more.
My colleagues at the Palace for not forgetting me, for reminding me that I used to be a contributing member of society (well, business anyway) and could one day be again.
My doctors and my nurses.
The people who comment on my blog and make me feel like I am being heard out there. Well done especially to Marion - thank you both for overcoming the technology and for the recipe!
My motorbike dreams.
The fact that I have two arms, two legs, a mostly functioning body and a mind that still works.
The fact that God looks after me and blesses me everyday, even when I'm too self-centred to be grateful for the blessings.
Fruity-bix.

Notice a theme there? The things I am most grateful for are the people in my life. In fact, there are four great Fs in life - faith, family, friends and food. (Yes, I know Amy. Ta by the way. I didn't see any copyright, and I amended the quote anyway. Blogging is like that.)

So I am grateful to my God, for his great blessings and promises.
To my family, for loving me and caring for me so much.
To my friends, for choosing to be my family, and choosing to love me.
And to food, just to make life really good. Besides, who wants to die skinny? (I've had no takers yet on the Pooh Bear email thing, either by the way. Tell your single friends.)

So while I'm going through a bit of a depressed phase, I'm sure that's normal too. And you know what? Even if it's not normal, that's what's happening now, so that's what has to happen. So there. And I haven't completely lost the plot, I still have so much to be grateful for, and I will still find things to make me happy. Mostly people, God and food, I suspect.

Oh, and humour, and having a laugh whenever I can. Any suggestions on what I should wear to my final chemo ever (because I'm buggered if I'm going to do it again)? I am open to suggestions. I'd make it a competition, but the last one failed. One entry? You guys are so slack. I know I have more time on my hands but still!

And just to show that I haven't completely lost my sense of humour (and probably to really highlight the truth of my last post) and also to reward you for sticking out such a long post, here's a little something I wrote about the Pussycat Dolls two weeks ago...

"Words fail me. There is now a forum for young women to stand up and ask "Am I skanky enough?" Who then cry when their dreams are shattered as they are told "No, in fact, you have too much class to be in our club".

Search for the Next Pussycat Doll launches on Sunday night. Every teenage boy's dream - a whole host of scantily dressed girls gyrating to try to prove that they have what it takes to be the next great slu - sorry, burlesque dancer. (A what?) Apparently now every teenage girl's dream as well.

I thought being sexy was for the boys. If I go out in my 'check 'em and weep, boys' bra, it's for the boys. I would never dream of getting all tarted up, getting a bunch of girls to check me over and then ask if I was hot enough and let them point out my flaws. And you know what? It's bad enough that we DO do it for the boys. Unfortunately, I've never had a guy walk up to me and say "Phwoar, your degrees are so hot. And your kind nature really turns me on." (He'd probably get quite a good response, though.) But to do it for our fellow girls in order to establish a hotness pecking order?

The thing that gets me is that these women get paid to act this way! There is money in skankiness! Lots of it! Just look at Paris Hilton! It's almost enough to make any girl hide her brains and flash her boobs. And the way things are going, that's what the next generation of girls will do.

Unfortunately, along with all the teenage boys, dirty old men and pre-pubescent impressionable females, I'm probably going to tune into the first episode. It's like driving past an especially gruesome accident. (And besides, if you're going to bag a show, you really should watch at least one episode.) Actually, my best friend and I are making a party of it. We're arming ourselves with those irritating party blowers in order to express our feelings in the really bad bits. We'll eat M&Ms (to make sure we'll never be 'hot like them', but don't worry, we have brains and talents and careers and stuff) and spend the ad breaks yelling at each other about how degrading this is.

What I want to know is what happens to the Pussycat Dolls in twenty years time? If instead of intelligence or talent you've based your career on being 'hot like me'and asking people to 'loosen up my buttons', what happens to you after your boobs sag and you've sacrificed your stomach muscles to a baby or two? Maybe we need to ask the question - where do Pussycat Dolls go to die?

Pussycat Dolls - Where Are They Now? Now that's a show I'll be tuning into!"

And in last Sundays's episode (yes, I've now watched more than one) some girl got voted off because - get this - she was TOO SKANKY. They called her Striperella. The shame. Too skanky for the Pussycat Dolls. To be completely fair, I didn't think she was any skankier than the other girls. I really liked her, actually. In a condescending sort of way of course.

Thank you for being there, people. Thank you for reading this and letting me express my pain so that I feel heard, so I don't feel alone. Thank you for loving me.

Thank you Mama. Thank you for birthing me, raising me, letting me go and then taking me back. Thank you for being there, thank you for being you. Thank you for loving me and taking on the pain that's associated with loving me. I love you more than I will ever have words for.

God bless us, every one. (Thank you, Tiny Tim.)

With much love,

Jess

Something I've learned

2007-04-06T15:58:00.000+10:00

Laugh, and the world laughs with you. Cry, and you cry alone.

Isn't that strange? We cry alone. When others are most needed, we cry alone. Or at least I do. My tears and my pain hurt others if I show them. So I cry alone. In bed, before I sleep. In bed, before I wake up. In the bathroom. Alone.

I used to have someone I felt comfortable crying to. That was how it worked - I supported him in tough times, he supported me. But he quit.

And there are so many people who love me, who would want me to cry to them. But if I cried to them, that would cause them pain, and I don't want to do that. It hurts me even more to see them hurting, just like it hurts them to see me hurting.

It's so much easier to laugh with others than it is to cry. If I laugh, if I make my hurt funny, if I post on this bloody blog, then people think I'm doing okay, which makes them feel better, which makes everything so much easier. Except that sometimes I'm not doing okay, and I haven't worked out how to be not okay.

I want to lie down, have someone put their arms around me and let me cry without them having to take on my pain. Without reminding them of their pain.

Don't worry, I'll go back to laughing soon. But I won't stop crying alone.

Not as epic as the last post, I promise!

2007-04-04T17:59:00.000+10:00

Well, the weekend on the Gold Coast has been and gone, and now I'm up in Mackay for Easter.

The Gold coast weekend was wonderful. It was so good to feel normal and hang out with my wonderful friends. I teared up as soon as they walked into the arrivals lounge. I actually got a bit depressed on the Friday night after they arrived - they are so happy and I was having such a good time just talking and joking like it used to be that I got depressed because my life is no longer like that, that my life has become the way that it is. Does that make sense? I know it was stupid to ruin the good times by dwelling on the fact that they've changed, but I couldn't help it. We used to be happy and laughing all the time - it wasn't just special occasions that I look forward to for weeks. In the end, because they are such good friends, they listened to me whinge, vent and cry about how rubbish my life is, then it was out of my system and we could go back to having a good time.

On Friday afternoon, before they arrived, I drove down to the Gold Coast (on my own, in the pimpmobile, hurrah!) and checked into the hotel. I went to the beach and spent some time on my own for the first time in weeks. It was a bit strange actually, I was a bit emotional on the beach. Then I picked Brad, Jacqui and Rachel up from the airport and we went to the hotel, then went out for a coffee.

On Saturday we went to Seaworld. I really wanted to see the penguins (I'm going through a Happy Feet thing), but unfortunately they all died a week or so ago. No, really, this is my life. (I'm very sorry about the penguins dying, and not entirely for selfish reasons. It is very sad, and I'm sure they didn't do it just to nark me.) Unfortunately, Saturday was an exhausted day. I have them quite regularly, I'm having one today actually. Basically, I am completely bone weary on exhausted days. I can't stand, can't walk, my brain is foggy and I am completely knackered. Standing up long enough to have a shower is exhausting. In other words, bad timing for Seaworld. But we got a wheelchair and all was fine. We got superb front row seats at the dolphin show, courtesy of wheelchair, but completely terrible seats at the sea lion show, courtesy of Mr NotSureWhatI'mMeantToBeDoing, manning the entrance.

About one o'clock I unfortunately started getting tired and cranky (yes, much like a four year old after too many lollies). I'm just not used to being around people at the moment! Even ones I love lots and lots. I'm just a turtle. But that was okay, I sent the others off to go on the rides I couldn't go on anyway and curled up in my chair in a shady corner and read my book. For dinner we went to the Gold Coast International's seafood buffet, where, I am ashamed to say, I gave my worst ever showing there. Only two plates of seafood consumed. Very poor.

Sunday was lovely, we went to Skank Avenue (Cavill Ave) to check out the skanks (most of whom were still asleep or hungover). We did see some teenage mutant ninja turtles though. Then we drove up to Mt Tambourine, where I replenished my fudge supply. Fudge and Fruity Bix, my two staples. Then we drove to Coolangatta, had lunch at the surf club, had a final walk on the beach before the rain hit, and then off to the airport.

And then it was all over. Although on Monday Brad and Jacqui booked my flights to Sydney in three weeks (my brithday present). So I'll be down soon folks!

I then went to Amy's to watch Search for the Next Pussycat Dolls. I've written something on it, stay tuned. (It's my blog, and I'll change the topic from boring old cancer if I want to.) I just need to work out the technology first. It was much better than expected, since half the girls got a virus and there was some great projectile vomit shots. Superb.

Now, I have discovered something truly horrifying. I can't believe no one mentioned this to me earlier. It is a calamity. A tragedy. Truly truly sucky.

In my first cycle of chemo, I lost about seven kilos. Now I know that this is very bad, but secretly I thought it was pretty cool. My consolation prize for that extremely crap experience, if you like. But, like a good girl, I have been trying to gain some weight back, because it's extremely bad to lose weight on chemo. So, ably assisted by steroids that make me hungry at irritating times (4am munchies anyone?) as well as kill off any Olympic career I was planning, armed with a steady diet of Fruity Bix, skim milk and fudge, I have managed to gain a few kilos back.

My jeans are still too big around my legs and bum. They've stayed skinny. I suppose I should take comfort in that. And I would, if not for the fact that my regained kilos now live just above the waistband of my jeans. And we're not talking homemade muffins here. Oh no. This is a mass-produced McDonalds 'Would you like a trailer with that?' triple chocolate chip muffin. I CAN'T BELIEVE NO ONE TOLD ME ABOUT THE MENOPAUSE BELLY!

Now there are some definite perks of the whole menopause thing. Loving the no periods thing. Loving the chemically controlled libido (low please, no point in one of those). Actually, I think that's the end of the perks.

It is bad enough that I can't have children. But to not have children but still look like I am perpetually toting triplets? Sometimes I think that God's sense of humour is blacker than mine. Or at least better because he can make funny stuff happen, not just write about it.

(Oh dear, my sense of vanity has just kicked in. Before you think I'm some bald pregnant dugong lookalike, it's not really that bad. I'm just a girl, and therefore vain. I am comfortingly cuddly. Kind of like Pooh-bear, but without the yellow fur. And with pants on. If that sounds appealing to you, email me. Actually, if that sounds appealing to you, don't email me. You're too weird for me. No, better email me. Pooh-bears aren't in a position to be choosy.)

I liked the dugongs. They were cool.

Today I was knackered again. If I'm this exhausted when I wake up tomorrow, I'm going to have to go down to the hospital here in Mackay and do some blood tests. It usually means my red blood cells are really low and a bag of blood usually cheers me up. It's the Dracula Spectacular, Dracula Spectacular, Dracula Spectacular sho-ow. (A musical I actually did do in high school, O Palace Dwellers. You didn't miss much.)

Now, tomorrow I have a very exciting activity planned, and I will share it with you afterwards!

Hello Craggles! Welcome to the weirdness. No cool photos (although I've been meaning to get some bald shots up to compete with the 'nice' one) but I write more frequently than Pils! He's having more fun though.

Talk soon!

Much love and God bless,

Jess xoxoxo

Happy brithday!

2007-03-28T15:09:00.000+10:00

And no, smartypantses, that is not a typo. That is how I used to say it as a child - I think it's what one of the mouses says to Cinderelly - the other mousie says 'No, no, stupid'. It's when she's all dressed up in her ball dress. Then again, it has been many years since I've seen the movie (Sophie doesn't own it, I think), and I may be making it all up and living in a fantasy world that only exists in my own head. Wouldn't be the first time.

And I know it's mice, not mouses. (I've gone all paranoid now that all my deliberate grammatical and orthographical deviations are now going to be laid at the door of ignorance or error. Although I have to admit, being a show-off with a big word and then finding out you spelled it wrong is really really dumb. Proverbs 16:18. Although if I'm going to quote that verse I shouldn't use words like orthographical. Even though I orthographically-checked.)

ANYWAY, happy brithday to me! I love brithdays. I always have. I'm not old enough for them to be a depressing thing yet - and I'll lay a motorbike on the fact that I never will be depressed about getting older on my birthday. (Take that, whingers.) I get that same childlike joy out of my brithday that I've always had.

Although I have to admit that I was a bit depressed the day before my birthday. Not about turning older, but I started reflecting on where I was the previous year, how happy I'd been, and how much easier my life had been. How carefree. How much more in line with what I had planned for my life. Because where I am now is certainly not what I planned for my life. This is not where I wanted to be. This is not where I want to be. And it doesn't look like anything I did plan for my life is going to happen. And that is very depressing.

But that brings me to the reason I love brithdays. I was not depressed at all on the actual day. I had the most amazing day yesterday. And you know why? Because I am so loved. And yesterday everyone showed it. I had six text messages before I even got out of bed. (Admittedly, a mixed blessing, that one.) I had so many calls I didn't get round to returning them all. (Sorry.) People took the time out of their busy schedules to send cards and presents and flowers. (Thank you Palace dwellers!) I went out to lunch with all the non-working layabouts I could rustle up and then out to dinner with my family and friends. I love brithdays because it's the day of the year that I feel most loved. Thank you all for making it so special.

So what did I do? I woke up to read lots of texts, but didn't actually bother getting out of bed till about nine (hey, it was my brithday! Oh alright, that's standard practice íf I'm not going to the hospital). There was a note from Mama saying that if she's not there, to go back to bed. I am a good, obedient daughter. I got up again when she got home. The kitchen was full of balloons - Ben had come home in the middle of the night, blown up balloons and gone out again. Mama had gone shopping - and I am now the proud owner of a very nice new watch. It even glows in the dark! Very excited. Mama had toyed with the idea of a smoked salmon breakfast, but knows me well enough at the moment that it's Fruity-Bix or it's Fruity-Bix. Then we toddled off to Dad and Beata's to pick up Beata and Sophie to go out for lunch. It was Sophie's first ride in the little yellow car (aka the Pimpmobile) and she was very excited. However, we got to the restaurant (my favourite Japanese restaurant at Southbank, Ginga)and Sophie was unimpressed to see a strangish man sitting at our table. Now Sophie does kinda know Michael, but last weekend Michael did the Shave for a Cure. And looks much meaner and scarier. I really like it. So Sophie sulked all lunchtime. Turns out later she was sick, as well.

After lunch I toddled off to the Korean bathhouse for a facial and a head massage... to find that not only had Bella (my therapist there and my friend) come in on her day off, but her present to me was a scrub and a massage as well! So I had a lovely two hours, and it was the first time ever that my head has had a facial. I'm sure it's very good for it.

For dinner we went up to Le Classic (sorry, no website, not that anyone really needs to actually follow my life quite that closely), which is a restaurant I used to go to with the French crew at uni. I haven't been for a long time, mostly due to an incident that occurred there, but I overcame my moral objections because the food is fantastic, the atmosphere is great and it is very French. Plus they serve foie gras, and I was adamant that that was what I wanted to eat on my brithday. ABC came, but were very discreet and didn't stay long at all. The food was great, the company was awesome, it was a wonderful night. Not quite so great for Dad and Beata, since Sophie started vomiting in the car on the way and did so repeatedly throughout the night. Good thing I carry sicky bags. They think she had a virus, or she's been eating too many lollies left over from her birthday, but I think she was just disrupting my brithday party cause it wasn't hers. (No reason sibling rivalry can't flourish even if there's twenty years gap between the two, and one of them should know better.)

So it was a wonderful day, and thank you to everyone for making it so.

All that aside, what else has been happening? Well, my last post was short and to the point - chemo was pretty sucky this cycle, but not too bad. Definitely nauseous, definitely tired, but I (and my steroids) now make sure I eat whether I want to or not, and having something in my tummy definitely makes the nausea more bearable. I got my needle on Wednesday, so had bone pain for the rest of the week. Started getting a temperature on Friday, but it didn't go above the danger mark. Still, I was absolutely exhausted and didn't make it to a Bullwinkle meeting (Bullwinkle is our chess club for cool people. No really.) Saturday I was still exhausted but rallied for Soph's party, which was a big success. Rest assured IOM, I will not be pursuing a career in facepainting, unless I can specialise in flowers (amorphous blobs), butterflies (a few lines around the eyes) or rainbows (now my rainbows were tops). Sunday we went to church, where I started getting some chest pains. HOCA (Haematology and Oncology Clinics of Australia - aka my other home) is shut on Sundays so I would have had to go through Emergency to get it checked out. So I ignored it. Always so sensible, me. Even had a lovely evening with Annette at the French Film Festival (typical French film - everyone started miserable and ended miserable, although it was the first French film I've seen in awhile where no one actually had sex.)

Anyway, I went in on Monday for my dressing change, which usually takes about an hour. Mentioned the chest pains, at which my doctor pointed out that I had had my picc line put in the previous week, and that there was 50cm of line in a vein pointing towards my heart. If I'm having chest pains it possibly means that blood clots could be forming in my lungs. (Oops. Should have dones something yesterday.) So off I toddle for a cardiopulmonary CT scan. Now I have CTs all the time. They're dead easy, apart from the teeny tiny matter of finding a vein. The veins in both elbows are now pretty much dead and buried. They don't work any more. They made two very painful attempts to get a line into my right wrist, and thankfully the second one worked. It was very painful though, and I have some lovely bruises. Anyway, there was no clot in the lungs (whew). The pain is probably just the old radiation damage, that I used to hold at bay by exercising every day. Now that I'm falling out of shape and losing aerobic fitness, I'm having the same breathing problems I used to have after my first surgery. Which is actually a very unencouraging thought, if those old problems are going to come back. It is very frightening and frustrating to not be able to take a full deep breath and for it hurt when you try. So I'm really disappointed? worried? not happy that that problem looks like it will eventually come back.

Although it could be worse, the dressing change usually happpens on a Tuesday so we changed the booking to Monday for this week. Otherwise I would have spent all of yesterday in hospital instead of all of Monday!

In other exciting news - I drove a car today! For the first time in six months, I am not under the influence of morphia! This does mean that my usual excuse for paraenthesistic problems is gone, but it also means I can drive a car! My neck is good enough, I'm not doping anymore... next week while I'm up in Mackay I'm going to check out motorcycles! I won't get cleared till I do the MRI (Monday) and see the doctor (after Easter), but doesn't mean I can't look!

And we all know I'm a media tart, but here's a little snippet for those of you who can't wait for the ABC... just don't tell them I'm moonlighting. HOCA was shooting a promotional video to lure unsuspecting English nurses over to Australia for people like me to puke on, and asked me to be a good little sick patient. Check it out. It also gives you a look at where I spend most of my time and what it all looks like!

Now, there is a bit of a dogfight going on as to which Michael posted the 'gambolling like a fat spring lamb' comment. There are currently two claiming ownership. I'm currently going for Michael J, but Michael VP is adamant that was his. Unless Michael F, you'd like to throw your hat in the ring from England as well? I do love a good stoush.

Now that is an epic post, so I'm going to leave it there.

Thanks again for making my brithday special. I love you all.

God bless,

Jess xoxox

PS. Remember, vote Jessica Disteldorf for the next PussyCat Doll!

Usual chemo story

2007-03-23T16:20:00.000+11:00

Nauseous, tired, all my bones feel like hot pokers, even the little ones in my neck, cheek and ears.

In other words, completely normal.

This too, will pass.

Interactive opportunity!

2007-03-19T19:49:00.000+11:00

You may notice that I've fiddled around with some of my blog, adding some links and a 'summary' of the blog.

However, I'm not really happy with the description of my blog. I was thinking that you, my loyal readers, are probably in a better position to write a description of the blog. So I thought we could have a competition!

The description is that thing up the top, under the title. I would be very interested to hear your take on the blog - so please submit your version of what you think the description should be!

And for those of you who are not creative, please submit suggestions for the prize! (I'm currently thinking a tube of condensed milk, a packet of Smith's BBQ chips, a box of Fruity Bix and a year's supply of Physical Skim milk.)

Looking forward to hearing your creative efforts! (By the way, the word parenthesis - no matter how it's spelled - will get bonus points.)

Proper post below.

Princesses and Polish sausages

2007-03-19T19:01:00.000+11:00

Okay, after the last post's rather humiliating experience - always check spelling before overusing a word, folks - I am definitely feeling rather womblish (which I know is spelt right because I invented it).

On the plus side, today I am basking in adoration at being bestest big sister ever, because for young Soph's fourth birthday, not only did I paint her nails pink, but I also presented her with not one, not two, but three new fairy princess outfits! (They were on sale at the party shop for $5 each, it seemed silly not to get three.) She wore the pink one to the pool this afternoon and is currently prancing around in the white one, talking about weddings and princes. Go feminism. Doncha...

Our holiday in Maleny was just magical. Provided by a company called Apex Adventures (who don't seem to have a website, or I would link to it), we stayed out the Maleny Views Cottage Resort and ate at King Ludwig's German Restaurant. Both had amazing views of the Glasshouse Mountains and the people at both places were so friendly. Our room was magnificent - two bedrooms, big comfy couches, double spa with view, giant plasma telly - and the breakfast each day was fantastic. We spent our days roaming Maleny and Montville and generally relaxing and taking it easy. It was just magical, Maleny and Montville have always been a very special place for Mama and I. It's just so peaceful. We went down to the Eumundi markets on Saturday - via the scenic route down the mountains. Mama's bright yellow pimpmobile (Hyundai Getz) did brilliantly down the 30% incline dirt road slope with no guardrail, even though Mama is absolutely terrified of heights! The local radio station was hosting a Leukaemia Foundation's World's Greatest Shave event at the markets, so I went on-air and talked a bit about my story and the Foundation and the great work they do. I'm such a media tart.

On Sunday I went around to the Van Pelts to spend some time, and then went to Mass with them that evening, and the shave event their church was hosting. Both Michael and his father went the shave (with Tom losing the beard and mo as well) and identical twin girls with the most gorgeous long curly hair as well. It was a great event.

Today is Sophie-Doph's birthday, and we went to the Sushi Train and then to the pool. She's just come in to change out of the white dress into the purple one with the feathers, which she says is the prettiest. She is having a birthday party on Saturday, and I have bought face paints and fairy wings to wear. Nothing wrong with a giant fairy.

Tomorrow it starts again... I need to rock up at the hospital at 8.30, hungry, for my new picc-line to be inserted at ten. Not looking forward to having it put back in - it's unpleasant and painful for a start, and then I have to deal with tubes in my arm, and need to keep it dry and stuff. But I want it in my left arm this time, which might be a bit easier, and also want it a bit higher up in my arm, so that it won't kink each time I bend my elbow. Not that the operating staff will be terribly interested in what I want.

It also means that I will have to stay in hospital overnight, which is not very fun. I'm hoping to get out early the next day though (which kinda depends on not being too nauseous) because I am seeing the neurosurgeon who will tell me how my neck is going - motorcycle here I come!

Oh, did I mention that Smiths BBQ chips are definitely out now, and that Apricot Fruity-Bix and milk are the latest big thing?

So not looking forward to tomorrow. Last cycle I had no nausea, but that may have been because they omitted a particular drug to avoid the side effects. No need to omit it this time, so I guess we'll find out if that's the drug that causes the nausea...

I'll whinge later in the week!

Oh Michael - Jessie the cowgirl has started talking by herself. We'll be sitting on the couch, minding our own business, and Jessie will (from her home on the fireplace mantel) start yodelling. We're blaming the heat.

Love you all,

Jessie (yodellayahee...)

Not a whinge!

2007-03-13T18:12:00.000+11:00

Hey troops,

The moral of the story (yes, I know I haven't started a story yet - and do I use that phrase too often? Am I a cliche-addict? Do I get off topic too easily? Or worse, do I ramble?) is that I should write my blog BEFORE I write emails or accidently get completely lost in other peoples' (more interesting and definitely cooler) blogs. I have spent all afternoon on the internet (oh what bliss!) and I've spent a lot of time on smh.com.au and lots of time cruising other peoples' blogs. There are people out there with much more interesting lives than me. If I can work out how, I'll post links to other peoples' blogs and you can all stop reading mine.

I think I will be arrested for crimes against dashes and parantheses (brackets, for you people with lives).

Bit of a whimsical mood at the moment.

Sitting in the Sofitel at the moment. Could definitely get used to it. Mama left her phone in the car, the valet noticed, rang the room and then brought it up to us. Now that's service. We don't even tip in this country.

Anyway, why am I sitting in the Sofitel? A) because it's been 38 degrees outside - this is supposed to be autumn! Hard to ignore global warming when the sweat is pouring off you. B) Because I can. Dave (my step-dad) is in town doing a course, and the company put him in the Sofitel. So while he is on his course, Mama and I hide in the airconditioning and surf the net. Bliss. We're off to a Gold Class movie tonight (not available in Mackay, and besides, much easier on Jessie's neck). I seem to be living the high life at the moment. And on Thursday, some wonderful people up in Maleny (Sunshine Coast Hinterlands) have offered us use of a cabin for a couple of nights. So stop feeling sorry for me now people... my life is good. God loves me.

But don't push me down the mountain just yet - I go back to chemo next week. (Just spoiling the mood.)

Last weekend I went to Toowoomba for Ben and Sus's wedding. Everything kicked off on Thursday night, with the hen's night... attempting to recreate the posh hotel/cocktails/spa thing that worked so well before. (Definitely think we should make that a regular event, Sus.) (Oh dear, more parantheses.) (I'm doomed. The grammar police will arrest me for overuse soon.) (Oh, okay, just one more.) And it was a great night, even if we didn't make it to the spa... which was unfortunately located in the bathroom - imagine that! And wouldn't have fitted two of us, let alone all four... It was not the Pimp Suite! But we had a good night, even if we did work out that you're definitely getting older when a C.S. Cowboy makes you feel queasy instead of wanting to dance on the table. So it wasn't a late night... but probably just as well! Friday morning we had our nails done, which was nice. I think I'll start making an effort to actually do my nails - I have very nice nails, so a little effort can't hurt...

We had lunch, Rich and I did a little last minute shopping (organised? What does that mean?) and then Sus and family and I went to look at the flowers and then on to the church for the rehearsal. Big, beautiful church. We had the rehearsal dinner and then a reasonably early night for a very big day the next day!

We spent the morning getting beautiful - my hair took the shortest time, but it meant that I had to wear hair all morning once it was done! (And yes - oh, hello paranthesis - I wore the brown wig, not the pink one...). Susan was absolutely radiant, really beautiful. Lovely dress, lovely flowers, and she looked so happy too. The ceremony was beautiful (very hot in the church though!) and only a slight glitch when we all signed a document marrying Sus to one Ben Sullivan - never heard of him.

Lots and lots of photos... which is all part and parcel of the wedding, but takes its toll.. with some hopefully classic shots of Sus going round on a sea-saw in a posh white frock! By the time we got to the reception we were all complaining about our sore feet, only to be greeted by an example of Sus's thoughtfulness and military operation planning capabilities - hot pink thongs to match our dresses! And no further complaints were heard.

The reception was lovely, the speeches were great, the food was good and so was the music. All in all, it was a lovely wedding, and they both seemed very happy.

There is something mildly ironic about signing a marriage certificate with a man who split several months ago, however. (Richard was best man.) (Oh hello again, paranthesis.)

So a good weekend, and a good weekend ahead. And I'm feeeeeeeling good. (I know that it's an ad for quitting smoking, but I like to sing it when I'm feeeeeeeling good. And I'm feeeeeeeling good.) And if you post a comment on my blog I'll feel good some more.

I'm off to see Wild Hogs and dream about my motorbike! Isn't she beautiful? I'm seeing the neurosurgeon next week to see how my neck is going. It's feeling good, I've got lots of motion back and very little pain. So I'm optimistic - although I think I'm the only one!

Take care of yourself, and stay tuned for more whinging next week.

God bless,

Jess (who's feeeeeeeeling good - end paranthesis).

PS Word of the day: paranthesis, plural parantheses. I think. If my spelling is shot to buggery as well as my grammar, don't let me know. It will only make me feel womblish. Ooh, possibly next post's word of the day...

PPS Michael, you don't think I'm capable of gambolling around like a fat balding semi naked spring lamb?!?

Quickie

2007-03-05T19:09:00.000+11:00

Just a quick update, things are actually going quite well. Little to no nausea, feeling pretty good. It has been STINKY hot here for the past couple of days, so I'm really wilting in the heat. Very low energy, but if that's as bad as it's going to get this round, I can cope.

Trying to be less whingy this cycle, but seem to be failing. Whinge whinge whinge.

I have made a terrible and gruesome discovery. I am turning into Andy from Little Britain. Yeah I know. I don't like it.

See, I even whinge about turning into Andy. Whinge whinge whinge.

Tomorrow I get my picc line taken out of my arm! I'm very excited at the prospect of a whole week of freedom. I can shower without protecting my arm! I'm going to have spas... lots of them! (Somewhere.) And then in a week's time I'm going to have another yucky operation to put it back in. But hopefully in my left arm and higher up so it will work a little better. CUrrently it kinks up whenever I bend my arm and it won't give blood anymore, which means that the vampires attack my other arm every week.

This weekend is Ben and Sus's wedding, so looking forward to a few days in Toowoomba... the dresses are finished and look good. I must dig my hair out though...

Hope you're well... I'm just about half way through my chemo now!

Lots of love,

Jessie xoxox

Warning: This is an overshare!

2007-03-02T14:06:00.000+11:00

The problem with blogging is that sometimes there are things that you don’t want to share – they’re just too embarrassing or painful or whatever. The other problem with blogging is that sometimes you want to share things that you really perhaps shouldn’t. But they’re just too classic not to share! So be warned, I am about to sacrifice my dignity and mystique on the altar of comedy. Read on at your peril.

So I started chemo again on Tuesday. We rocked up to the hospital early, and I was in a bit of stomach pain, really unpleasant crampy kinda pain. We toddled off to x-ray for a stomach x-ray, and then back to the chemo ward. In the meantime, I’ve thrown up a couple of times (and this is well before any chemo has started). My doctor walks in, looks at the scan, looks up and says “Jess, you’re full of shit”.

Yes, indeed. Thank you. The drugs that prevent nausea do in fact have a concreting effect. I was aware of it as a minor problem, but not to this extent. Such a great choice – nausea or concrete. I think I’ll skip the details on how we fixed the problem.

On the plus side, the chemo went well – I’ve had almost no nausea (which means I haven’t had to take anti-nausea drugs, which means – oh, never mind) which has made such a big difference. Yesterday I started getting the bone pain, which is unpleasant – even my cheekbones and ribs ache. This morning I took a fentanyl lollypop and before I finished it the nausea started. So I’m drawing a direct link between my painkillers and nausea at the moment. Vicious sort of side-effects spiral – have pain, need painkillers. Painkillers cause nausea, need anti-nausea drugs. Anti-nausea drugs cause concrete, and I’ve already said too much about that.

I have decided to call my nausea Nancy. We have nice Nancy, naughty Nancy and nasty Nancy. She has been really nice for the past couple of days, but it looks like she’s getting a bit naughty now.

I’ve started a new book – The Purpose-Driven Life. I’m looking forward to discovering and living God’s purpose for my life. I think it’s time to start living with purpose rather than just existing. It’s very exciting.

Mama and I have been planning out the next couple of months. By the end of May all this chemo stuff will be all over and we’ll be onto the next phase of our lives – scary and exciting all at once! It will take quite a few months to recover from chemo, so I plan on convalescing in Mackay.

I want to write emails to everyone, but again, internet access is very limited, so please forgive me.

Lots of love to you all.

God bless,

Jess xoxoxo

One of those big posts

2007-02-26T18:27:00.000+11:00

Okay, this is one of those posts that I put off because I have too much I need to update you all on, so I end up putting it off until it gets really big.

After all my whinging, I actually recovered really well from the last dose of chemo, after about 10 days. Which, to be fair to my whinging, is a long time to be chemo-sick. I managed to do some nice normal things, like go to the Ten Tenors and Little Britain Live, both of which were awesome. My appetite also came back, and I have had the mad munchies courtesy of the steroids. Predominantly for milk (I'm drinking a litre or so a day... I love milk right now) and Smith's Barbeque chips. NOT Samboy. Must be Smiths. Especially with milk. Did I mention I love milk?

So I've done two cycles, which is what I committed to, and then I had some scans done to find out how effective it's been. My thinking was if it's not working, then there is no point my submitting myself to the gruesomeness of chemo. I also splurged on a trip to Sydney to consult my Sydney specialist, who has done the most research and knows as much as anyone does about my poxy disease (ie not much).

The verdict is that the tumours have shrunk a little (maybe 10%). More importantly though, I haven't had any new problems like I was towards the end of last year (the second ovary, followed by the neck pain, followed by the nausea), so it looks like it is doing some good. So I will continue for another four cycles, which is the most they would do anyway. That's another three months here in Brissie, and then I will go up to Mackay to convalesce for awhile.

Otherwise I had a really good (if a bit tiring) weekend in Sydney - I spent Thursday at the hospital seeing my doctor, and then I gatecrashed a LifeForce support group meeting. It was really good to see everyone there, but there were a also a few people I didn't get to see. I think about everyone a lot, and I really miss the group. It's not just the ability to talk about everything (that's what the blog is for these days!) but it's just knowing that there are other people going through the same thing. That's what I really miss. It's very easy to feel all alone on this journey.

I went into work on Friday and ABC came down to Westpac to do some filming, which was strange - people are much less excited to see you when they're being filmed! But I think we got some good footage, and then I had a really nice lunch with everyone. It was great to see everyone, although being back in the office made me really miss my job.

In the afternoon, Jacqui and I went out to Westmead to see my doctor again (Jacqui took the day off work to hang out with me). Then we went back into the city to have drinks with some friends (and ABC as well). It was a pretty good evening, except I got a bit stroppy with Richard at one point, something I still need to work on. I'm a bit low on patience and tolerance there. I'm trying to be more forgiving, as our good Lord teaches. It's kinda my little project at the moment - forgive him, whether he is sorry or not.

Saturday Jacqui and I did a little bit of shopping and then went to Brad's to watch DVDs. On Sunday I went back to Baulkham Hills Baptist Church with the Jos. It was so good, I really miss the church. Everyone is so welcoming and they all prayed for me. Plus it's great music and the people are wonderful too. I love you all.

Tomorrow (Tuesday) chemo all starts again, at the crack of dawn (7.40! And I should point out that I am officially a Bum, and therefore that is extremely early for me). I'm not looking forward to it, but I am going to try and maintain my curent positive attitude. My bible study lately has been on the topic of God's wisdom and knowledge and the fact that everything that happens is part of His plan and that His plan is based on perfect wisdom, unlike ours. So everything that is happening needs to happen in order for me to become the person that God wants me to be. So I'm going to try and learn from our Saviour's example and more forgiving, less complaining and more trusting.

Thanks to everyone in Sydney for a great weekend.

Lots of love,

Jessie xoxox

First and only warning

2007-02-20T09:55:00.000+11:00

Anyone making Britney Spears jokes will be instantly shaved bald in the dead of the night.

Popping head out for a second

2007-02-13T17:04:00.000+11:00

I am in a big fat chemo hole. I'm just hiding away until I feel like a human being and less like a really sick slug.

The good:
We are now in a Leukaemia Foundation house, and settled in.
I bought a beautiful leather recliner. I call it the magic chair, because it's the only place I'm comfortable and don't feel really bad.
I love my mum.

The bad:
I'm so nauseous it's crippling.
I have no energy to even stand.
There seems to be a correlation between standing and nausea. If I'm sitting in the magic chair the nausea goes away.

The ugly:
The magic chair is stationary in one position. Thus, I have one position.
I no longer like food.
I'm bald AND skinny.

Truth is I have turned the corner slightly and am feeling slightly better. Will post more later.

Thanks for all the comments everyone. I hope to get around to emailing everyone soon.

Jess xoxoxo

PS Gone off condensed milk.

So much for a good week...

2007-02-05T19:30:00.000+11:00

Just a short post, my good week hasn't turned out to be that great physically. I am extremely low in energy - I really struggle to get out of bed, let alone chew food, which means that I don't have energy to do things like get out of bed or chew food, and thus the cycle continues...

I am on steroids to stimulate my energy levels and appetite (yes, Jessica Disteldorf, gourmet and gourmand extraordinaire, is on drugs to INCREASE her appetite!) but they don't seem to be working (apart from condensed milk, of course. Loooove condensed milk right now. Mama lets me.)

Just wanted to post to let you all know that if you put your fingers up my nose and thumb in my mouth, you could throw me down a bowling alley (pity about the neck damage). Yes, my hair is all gone. It was shedding like mad and I was so sick of having hair EVERYWHERE that Mama and I had an hour-long brushing session and pulled most of it out. Unfortunately I have a lot of hair, and still resembled a dog with mange. Bad mange. So a quick visit to the hairdresser and a zero all over has fixed that. It's growing on Sophie. She wasn't keen at first. By the end of the week she'll want one too.

Chemo starts again tomorrow. Yee-ha.

I'll post more when things settle down. We're probably moving into a Leukaemia Foundation house by the end of the week, so hopefully we can establish a bit more routine.

I hate cancer.

Jess xoxoxo.

Suddenly kinda good again...

2007-01-31T18:52:00.001+11:00

One of the downsides about not having the internet is that I don't get to read the wonderful comments you wonderful people put on my blog. What a pick-me-up. And greetings to Colleen and Warren and any other new readers - I find it amazing how many people are actually reading my scratchings! (Even Ben and Rich, who were technically on Ben's buck's night when they posted - don't worry, I think it got much more debauched than reading my blog by the end of the night!)

I have had a mental breakthrough. Someone said how they always get depressed and broody on how shitty their life is whenever they get a cold or get sick or something. I'm exactly the same. If I'm feeling lousy physically (ie the past two weeks), everything will escalate and grow into huge problems instead of being in perspective like it usually is. This week I'm feeling great physically and therefore in a great mood. I am really hoping that being aware of this will help me keep things in perspective next week... then again, I am also hoping that my drugs will keep a lot of things under control next week too!

Had a great long weekend. Brad, Jacqui and Richard came up and we showed Brad around Brissie and spent some time at our old uni... even had a debate about medical ethics while lunching at Wordies! (It's a UQ thing.) Did all the Brissie things - Mt Coot-tha, New Farm Park, and Brad and Jacqui cruised on the CityCat. We also had a BBQ out at Jacqui's parents' place at Wellington Point which was lovely. It was so good to see my friends, and I really needed it. I had a good cry at the airport (after embarassingly getting stroppy at Richard).

It inspired me (and the fact that I feel well this week) to catch up with my Brissie friends and so I am having a very social week! I even played some chess with Michael yesterday, and while I appear to have lost a few neural pathways and my opening theory is all shot to pieces (pardon the extremely bad pun), I still enjoy it, so I've signed up for an upcoming club tournament! Have brain, will use! Nik, do you remember what the Jess Defence was? Was it e4, d5, ed, c6? (Yes, I know it's not sound, but it's an open position.) My inner geek is scrambling out...

I have made a depressing realisation. If I ever get back out into the dating scene, the poor guy is going to google me. And what will come up? Numerous mention in chess tournaments, cancer articles and a feminist article. If you know anyone who's ideal woman fits that description (sick nerdy feminist), for pity's sake PLEASE give him my number! At least this blog doesn't come up if you google my name - I know I've got a caravan of camels worth of baggage, and you too can read all about it in one convenient location! Although I have been thinking about putting a personal ad up - Single female to suit commitment-phobe. Guaranteed no long-term commitment! What do you think?

Anyway, I am having a great week. Everything seems to be in much better perspective, I have a little more energy and I'm feeling so much better. Bit of a glitch on the weekend - on Friday my white blood cells (immune system) hit rock bottom, making me neutropenic (absolutely no immune system). I started self-injecting a drug called Neupogen (into fat, not veins, chill...) which extracts cells out of the bones to boost your blood counts. It worked well, but gave me absolutely excruciating back pain. Thankfully Susan and I were doing a trial run for her hen's night while the boys had their buck's night, and spent a great evening in a hotel in the city. We had a wonderful time in the Pimp Suite, which had a huge spa next to the bed, so we sat in the spa (good for agonizing back pain) and watched movies, while consuming room service cocktails!

This week I'm doing quite a bit of footage for the ABC - trying to get some good happy stuff before poxy chemo starts again next week (they're coming to that one too).

Hope you are well... thank you so much for sharing this journey with me. I had a few goals with this blog, one of them was to help other cancer journeyers feel less alone. I didn't realise it would help me feel less alone as well. Thank you, and may God bless you as much as he has me.

Lots of love,

Jess

Suddenly kinda good again...

2007-01-31T18:52:00.000+11:00

Still sucks, frankly

2007-01-23T18:22:00.000+11:00

Yup, still sucks. Would love to say I'm feeling so much better but it would be a big fat lie. Physically, I am feeling slightly better - at least I'm not vomiting constantly and I have something that vaguely resembles an appetite. Primarily for rice and soy sauce, but it's a start. Yes, I'm skinny now. Yee-ha. I thought I'd be a bit more happy about that, but I'm having trouble caring about a lot of things now.

That's my main problem at the moment. I don't have the energy to care about anything. I wake up and lie in bed trying to summon up the energy to get out. Then I sit on the couch and let my sainted mama make me breakfast and look after me. I'll read, but that's about it. I don't have the energy to even draw or organise my paperwork or anything. I am a big fat giant slug of a thing.

It's partly fatigue, partly depression, partly goodness only knows what. I'm just buggered. It's such an effort to do anything - little things like getting my sunglasses out of my bag when it's bright seem like too much effort because I'll need to put them away again, and it's just easier to close my eyes.

I just feel so uninspired. I feel like I'm marking time until I die, and can't even do anything constructive with my life because that would require energy, and I just don't have any. I hope this is only temporary.

People visiting cheer me up, take my mind off things, although I feel like such a blob with no intelligent conversation. Please come and see me even if I'm not very animated. It really does help.

At the moment I can't seem to get physically comfortable. My lower back aches, my leg aches and nowhere I sit or stand or lie can get me comfortable. I fidget constantly and I am just really restless. I can't relax. I'm reducing my pain medication so I'm probably detoxing from a minor morphiate addiction. If it's this bad when it's controlled I understand why people sell their bodies for heroin and don't try to get off it.

I am getting a lot of comfort spiritually. I went to the local Baptist church down the road from the motel and the pastor their is a great speaker, and there was a good, happy vibe. He came to visit me in hospital and the church has already started praying for me. It's good to feel part of a community again. And I'm growing a lot through my daily studies and prayer time, and getting so much comfort. My faith is the main thing that keeps me going at the moment, and it's the only area that I feel like I'm growing as a person while I'm so slug-like. Although I do feel guilty that I'm still depressed and slug-like when I should be grateful for the many many blessings in my life. And I am grateful, I'm just a little lost at the moment. God has been very good to me.

Amazingly, I feel so much better after my big whinge. Thank you everyone just for listening - I'm always amazed at how many people actually read this blog! I do feel better having got it all off my chest - I'm sorry to be so depressing, but I needed to say it all so that I would feel better. And thank you everyone for your comments - they make me feel like people are listening and sharing this journey and it helps to feel a bit less alone.

Although while I have my amazing, indefatiguable mama with me I know I'll never be alone. Even I, the verbose and over-sharing one, lack the words to talk about my wonderful mama. Dave is coming down for the Australia Day long weekend so that will be a time of rejuvenation for her. I'm sure she needs it - looking after a slug must be very emotionally draining.

Much love to you all.

Jess

Chemo

2007-01-20T19:04:00.000+11:00

Well, it started, and boy did it suck.

We moved up to Brissie last Tuesday, and I've been pretty depressed and emotional. So glad my Mama is here to support me. When everything gets too much for me I just stop functioning and stare at the wall, and I'm so glad that Mama is here to pick up and keep going on.

On Monday I went in to have a portacath inserted into my chest. After an hour and a half of trying, the surgeon gave up. He couldn't get it into the right vein, it kept going up my neck artery, and he wasn't allowed to move my neck to pinch off that vein. So I came out bruised and swollen, with a new scar but no port. So on Tuesday I had a picc-line put into my right arm instead, which is like a permanent drip just above the elbow. It actually weirds me out a lot (it's stitched into the skin), so I keep in bandaged up. It's pretty good though, because it means no more needles, but I have to keep it dry, which makes showering difficult.

Tuesday afternoon I started chemo, and then had to stay overnight because I'd had two procedures (port and picc) in two days, so in order for the health fund to pick up the tab, I had to have an overnight stay (go figure - bureaucratic bureaucracy). So I did, and ended up staying till Friday. My haemaglobin levels are really low, so I had a blood transfusion on Wednesday, and the nausea and vomiting began in earnest then too, so I had to stay in to be hydrated, since I was keeping nothing down.

The first cycle of chemo is always a bit experimental - you don't know what side effects you'll have, and then they don't know which drugs will work on those side effects now. Hopefully we've worked it out a little now - there's one drug which seems to suppress the vomiting if not the nausea - so I feel like crap, but can keep fluid down. And another, dexmexadone or something, seems to be keeping the nausea under control, so I finally feel like a human being today. My concern with dexmex is that it's a steroid and will ultimately do very bad things to your body, so I'm trying to keep my dosages low.

It has been a truly awful week. Physically I have been feeling so bad, and emotionally pretty lousy as well. It's not a week I ever want to repeat. Thankfully I'm feeling okay this weekend, so I really hope that will continue. I will probably need some more blood on Monday, and my immune system will be completely down for most of next week, so I'll need to be very careful.

Next Wednesday night Brad, Jacqui and Rich arrive in Brissie for the Australia Day long weekend, so hopefully it will be a good relaxing weekend, hanging out at Jacqui's parent's place and showing Brad a bit of Brissie. I've also started having a weekly massage, and it really does help a lot.

Just wanted to post a quick update to let you know what's happening and also to replace the last rather depressing post. Not that this one is all that cheerful, but at least it's an update.

Hope to write again soon - internet access is very limited, but hope to post again soon.

Lots of love as always,

Jess

Moving Day

2007-01-09T08:49:00.000+11:00

So today is my last day in Sydney. I am all packed and ready to go. And it has been one of the most miserable weeks of my life.

It's time to come clean. A couple of weeks before surgery back in November, Richard announced that he no longer wanted to be with me. The reasons are very complex, but ultimately, he's not happy, he doesn't want to spend the rest of his life with me, and therefore spending the rest of my life with me would be based on a lie. So we have spent the months since then transitioning to a friendship rather than a relationship, with considerable success (although I'd like to take credit for that for being so fucking mature about it all).

So as if it's not enough that I'm dying, I'm now dying alone. I feel like the chance to build a deep, meaningful relationship has now passed me by - I'm not exactly a great catch anymore. I'm sick, going to get sicker, can't have children and ultimately probably going to die young. Bring on the men.

Yes, my heart's breaking, but most days are actually okay. This is the main reason I'm moving to Brisbane - to make a clean break with Richard so that we can actually be friends without having to live in the same apartment, and to be closer to my family who actually love me unconditionally, not just when life is good and easy (bitter, me?).

I don't want to make Richard the villain in this piece. Yes, he's leaving, but his reasons are valid, I understand and accept them, and he has done an extremely good job of an extremely bad situation. One of the reasons it has taken so long before we make the final 'split' is because he continued to support me throughout my surgery and recovery and radiation. He is, and will continue to be, an extremely close and supportive friend. He's just not my life partner anymore.

So basically, packing up my life has been miserable. People keep telling me to do what I want to do, but the truth is, I don't want to do any of it. I don't want to have chemo, I don't want to break up with Rich, I don't want any part of it. I just want to turn back the clock a year and have my old happy life back. And I just can't do that. Life has marched on, regardless on what I want, and I have to march with it, making the best of what God has given me. And He has been very good to me, something I haven't lost sight of. He has sent me wonderful friends and family to support me, particularly my mama, who is again leaving her life in Mackay to come and care for me in Brisbane. I'm actually quite excited about moving to Brissie with Mama again - she is an awesome flatmate and we have a good time together.

So I fly up to Brisbane this afternoon, where Mama is already waiting for me. We are staying in a motel provided by the Leukaemia Foundation for a couple of weeks while we wait for a unit or a house to become available. If none does, then we'll make other plans. The Foundation has been wonderful again. I have a day of tests on Thursday, and then I get a port-a-cath inserted on Monday. I start chemo again on Tuesday, so hopefully a week to get my mind in the right space will be enough.

I have also started a journal, and am currently contemplating becoming more efficient and simply converting this blog to my journal. It will make the blog much more boring, but it will mean more posts more often and streamline processes to make them more effiecient! Anyway, I'm still thinking about it, because if I know I'm going ot post them straight away, I might be more restrained in my writing, something I don't want to do.

Either way, I will post again soon, probably before chemo - next time from Brisbane!

Much love,

Jess

All custardy

2006-12-17T05:54:00.000+11:00

For a while there, things have been going all custardy. In fact, they probably still are quite eggy, but I'm getting my perspective back and feeling a bit better.

Recovery from the abdominal surgery was so fast, it was amazing. It was literally a two and a half week recovery for something that should have taken six weeks. Given how many people were praying for me, I guess I shouldn't really be suprised :) I am very blessed.

The pain in the neck, however, has been the pain in the neck. It hasn't improved, and started getting worse a couple of weeks ago. Two weeks ago I also developed severe nausea and started vomiting up all my pain and anti-nausea meds. I have so many doctors, and each one prescribed something new, took something else away, and in the end I was on a ridiculously complex cocktail of drugs that something had to be done.

On Tuesday I went to my radiation appointment and was in so much pain I couldn't lie down for it. We spent all day in radiation that day talking to various doctors and their registrars, and in the end I was admitted to hospital so we could sort it all out, and get a grip on what medications I was on and what meds I should be on, and just get back to normal.

Thankfully it worked really well. I'm still on an elaborate cocktail of drugs, but we know it's the right elaborate cocktail of drugs now!

As to my neck, we also did some tests there. It turns out that about a third of my C1 vertebra (the top one that holds my head up) is tumourous and has been eroded. This means that there is a chance it could collapse, in which case I would need a very nasty operation (probably fusing my top two vertebrae together, pretty much killing off any neck mobility). [Note: this is the really custardy bit.] However, the good news is we've already treated this through radiation, so now we're just waiting for the radiation to work over the next six weeks! I ask you to please pray that the radiation treatment is successful, and I have a lot of faith that God will answer this prayer as well. I am very confident here, which is why things don't seem so custardy any more!

It's Sunday morning (early - can't sleep) and I am on weekend leave from the hospital. Yes, they let you out for good behaviour! I have to go back to the hospital tomorrow - I haven't been discharged, I just have something called a 'gatepass'. But hopefully I will be officially discharged tomorrow.

The first week of nausea was spent at home, and unfortunately coincided with the visit of Beata and Sophie. I’m so disappointed that I spent that week so sick and unable to do anything. It would have been nice to do some fun things with them. It was hard for Beata I think, not only because looking after a nauseous and vomiting person is unpleasant, but also because she came down with the express intention of cooking me lots of healthful foods, and I was completely disinterested in anything food-related at all! But it was still wonderful to see them and to spend time with them again – even if Soph does think that Jessie vomiting is just hilarious.

The second week of nausea was spent in hospital – I had already given in and called Mama to ask her to come down; she arrived on the Saturday beforehand. It was a completely crazy week, with plans changing every hour, depending on which doctor we’d seen last. The decision was made (or presented to me, there wasn’t much leeway in it, truth be told) to start chemo early, in January. There was even talk of starting before Christmas, but logistically that was too crazy. This does mean that my travel plans have been put on hold, unfortunately. Not cancelled – it just means we’ll travel after chemo!

I have pretty much decided to undergo my chemo in Brisbane. More on this decision later, there’s a lot behind it, but I don’t want to get into it now! This means that I need to see my medical team in Brisbane before the end of the year – and since it’s Christmas-time at the moment, everything is well and truly crazy! So we have been cancelling flights, changing flights, trying to fit in Christmas and it’s been mad. I wasn’t well enough to go back to Mackay last Friday, which was the original plan, which means that Mama and I didn’t get to go up to Laguna Quays with Dave and John to play golf widows (by the pool, with books and cocktails!). So quite disappointed about that, plus I feel bad that I’m being so disruptive to Mama’s life.

But the new plan (assuming I stay well, the drug cocktail continues to work, and that I’m discharged on Monday) is that Mama and I will fly up to Mackay on Tuesday, and Rich will follow on Friday. None of us have even thought about Christmas, so apologies for lack of Christmas cards, presents and all Christmas-associated things! Hope to get back on track soon, if belatedly. We will have the family Christmas, and then I will fly to Brisbane to see my oncologist there, and then onto Sydney the next day to spend New Year’s Eve with Nik, who’s coming over from Japan! I’m very excited about that and determined to be well enough for that! (Don’t worry, I will be Nik!) I will find out when I’m in Brisbane when I start chemo, so will fly back to Brisbane for that in early January.

In the meantime, did I mention my highly glamorous neck brace I now have to wear? Not all the time, but whenever I’m mobile – so at home where no one can see is fine, but the moment I walk out the door… It’s a cross between Queen Elizabeth I’s ruff and a plastic straightjacket used for dogs!

Thank you so much for your thoughts and prayers, and please forgive the fact that I’m not keeping much in touch at the moment – I do go quite anti-social when things are rough. Please do keep me in your prayers, and please also know that you are in mine, with great gratitude. Please pray specifically that my radiation treatment will be successful, and that I can continue to keep my pain under control. Thank you so much for all your love. I feel so much love from my wonderful family and friends and I know how very blessed I am.

With much love and thanks,

Jessie xoxoxo

Searching for peace in a mad world

2006-11-27T11:53:00.000+11:00

Greetings all. The last couple of posts have been very factual. This one slightly less so. Blogging lately has been a bit of a chore, something that I need to do, and that's not what it was designed to be. Partly to keep people up to date, partly as a place for me to vent. Unfortunately the two can sometimes be slightly at cross-purposes - namely that sometimes there are things I need to vent about but I'm not ready to share them with the world yet! And when that sort of dissonance occurs, I tend to avoid blogging at all.

That said, the main reason I don't blog frequently is time - I'm so busy working, exercising, living that I just don't have time for 'frivolous' things like blogging.

Let's talk about time. I DO TOO MUCH. Shall I say it again? I DO TOO MUCH. And it's not that there's too much on my plate, or that life is too busy. It is that I, me personally, I, Jess, DO too much. I am constantly DOING something. I never stop DOING something. If I stop DOING, I might have to think. If I think, I might have to feel. If I feel, it might be painful. And I spend too much time planning. Even this whole cancer journey is planned as much as possible. I PLAN on having chemo in March. I plan to do things a certain way.

Life just isn't like that.

I've just come back from a marvelous retreat run by Lifeforce. I don't actually want to talk about it, partly because I don't have the words, and partly because the things I've learnt from that weekend can't be expressed in a way that others would understand.

Instead, let me tell you what I'm going to do (uh oh, sounds like I'm planning, but I'm not really).

I am going to stop doing and start being.

I am not going to read at all times, as a way of avoiding being and thinking.

I am going to spend some time every day just being. I want to create a new ritual when I wake up - to go outside with a cup of tea and just be.

In fact, I'm going to go be now.

Much love,

Jess

When the going gets tough, the tough get cranky

2006-11-23T10:07:00.000+11:00

Well, a week is a long time, and two weeks is even longer! (Profound thought for the week.)

Surgery was successful. More than successful, it was the best possible outcome we could have had (short of going in and finding absolutely nothing). Dr B took out the ovary and the uterus. It was stuck down to the bowel, but she peeled it off and there was no need to operate on the bowel or anything like that.

I also let myself be talked into an epidural for pain relief. I was dead against it in the week leading up to surgery when the idea was first floated, but Dr B and the anaesthetist talked me into it. The anaesthetist told me that if I was older, he would just tell me that an epidural was part of the surgery, and the only reason I was getting the choice between an epidural and a morphine drip is because I am young and healthy. I just had a real aversion to sticking anything into my spinal chord, and it seemed to be tempting fate to do something different, with a new set of risks.

Very glad I let myself be talked into it though, because it was totally brilliant.

Numb from ribs down, so no pain, but not all foggy and stupid on pain-killers. It meant that I was up and more mobile a lot sooner but I wasn't really groggy and sluggish.

I was a bit distressed when I came out of surgery, but only because I had a huge amount of pressure on my bladder, so I felt like I was absolutely busting for the toilet even though I had a catheter in. I was very aggressive and demanding (it was actually quite painful) and they managed to increase my painkillers through the epidural, sit me up more so gravity could work and it eventually went away.

I had a good couple of days recovering, and then the epidural had to come out. So they gave me some painkillers, took the epidural out, and then I got nauseous. And sick. And nauseous. And sick. The painkillers spaced me out, made my vision blurry, and then I got really seasick and spent most of the day throwing up and just feeling generally crap. This was the day that most people had arranged to come and visit and so I cancelled all visits and just shut my eyes and pretended I was somewhere else. Yuck.

It improved overnight though and I went home on the Friday (surgery was on the Monday).

Now, everything surgery-wise has been improving brilliantly since coming home. The wound is really neat, the pain is minimal and everything is healing really fast. I'm recovering really well.

Unfortuantely, things are not so great elsewhere. Before I went into the hospital I had been having a bit of neck pain, which I put down to stress and tension (it's not the first time my neck has gone during stressful times). Unfortunately, while in hospital it got steadily worse, and when I came home it became truly unbearable.

Saturday night found us running around looking for a late night medical centre to get some valium to try to relax the muscles, it had become so bad. The valium did help all the surrouding tight muscles, but the really sore spot (on the right side of the base of my skull) was still really painful. This slowly brought us to the realisation that this probably wasn't just a tight muscle due to stress, but pain due to the metasteses in my bones. Very depressing realisation.

So we have been seeing the rounds of doctors to try to work out what the next steps are. I had an x-ray yesterday and I'll have another bone scan today, and then we are seeing both my surgeon and my oncologist Friday afternoon to discuss treatment. If it is still confined to the three bone spots that we know about (base of skull, clavicle and right femur), then we can just do a couple of blasts of radiation ('spot welding'). If it has spread even more throughout my bones, it might be time to start chemo straight away. Obviously chemo right now is definitely NOT what I want, so I am praying that it is still confined.

In the meantime, learning to live with chronic pain is a lot more difficult than I expected. I really can't think of anything except the pain. This is NOT how I want to live my life. So I am really praying that the pain will become more bearable soon. It is difficult for me and for those around me - Mama and Rich I think are very frustrated to see me suffer and to not be able to do anything to fix it.

This weekend Mama and I are off for a weekend retreat with Lifeforce. It should be a nice peaceful weekend, and I'm really looking forward to it. It's actually the reason that Mama came down in the first place - the whole surgery thing came after she booked flights down for it!

Well, that's about it for me for now... Will talk more later.

Please keep me and my wonderfully supportive Mama and Rich in your prayers.

Much love,

Jess xoxoxo

T minus 24

2006-11-12T16:51:00.000+11:00

Well, tomorrow is the big day. It was supposed to be Tuesday the 14th, but apparently my surgeon needs to do an eight-hour surgery on that day, so she's been scrabbling around trying to fit all her other patients in. I'm booked in for Monday afternoon, so I need to arrive at about 11am and the surgery will probably be at about 2pm

We (Mama, Rich and I) have spent most of the weekend with Kirstin and the Australian Story crew, getting some footage and doing interviews.

I'm starting to wish I'd taken a few days off before going in for surgery. It's been a bit of a frantic weekend and I feel like there's all this stuff I need to do before I go in for surgery tomorrow. I just haven't had time to write emails, make phone calls, send text messages and I feel like there are a lot of people I'm just not going to have time to speak to tomorrow. If you're one of them, I'm very sorry.

I also feel like I need some time to process what's happening. I haven't really had time or energy to sit down and really emote and process all the implications of the surgery tomorrow. I've been working hard in the lead-up to the time-off I'm taking and I've just accepted matter-of-factly that the surgery needs to take place, therefore it's happening. I feel like I need to grieve the fact that I am in fact having a hysterectomy, and that means DEFINITELY no children will ever be born of my body - but I'm just not ready to grieve yet. I suppose it doesn't really matter whether I grieve before or after the surgery - it has to happen either way.

I'm just a bit frazzled. I want to lie down, take it easy and read, but there's all this stuff I feel like I need to do. So I'm going to blog quickly, write a few emails, send some text messages, maybe make a call or two, and then I'm going to just take it easy and be peaceful.

It's been awhile...

2006-11-05T20:51:00.000+11:00

Hello all,

Well it has definitely been awhile, and that is more due to not enough time to post rather than nothing to say. It is also because so much has happened and I have wanted some time to process it all myself before I started talking about it.

Well, I had a scan in early October, and it was pretty bad. The tumour in my ovary has become pretty big (about 6x9x11cm) and is starting to impact on other organs. The tumours in my lymph nodes are getting bigger and more numerous, but no problems there yet. It is also looking like it is spreading to my bones, but again, not causing any problems yet.

So next week I am going back in for more surgery to take out the rogue ovary (and probably the uterus as well, since it looks like it's gone a bit troppo as well). So a full hysterectomy. That means definitely no children, but since a) none of those bits are working anyway while they're riddled with cancer and b) not going to be around to bring up children, that hasn't been as bit a deal as I thought it would be. And if I do get my miracle, then I've always been drawn to international adoption anyway.

So Tuesday 14th November is the big day. Mama is flying in the week before and will be here to support me through it again. It's pretty much the same surgery as last time, same scar, same sort of recovery time. At this point I will probably be taking four weeks of work and then doing some work from home for a week or so until I can go back to work.

The point of this surgery is to get rid of the immediate problem - the tumour in my belly. If the surgery is successful it's just the lymph nodes and the bones we need to worry about (for now). If not, then the tumour in my belly will start growing into other things (bladder and bowel and whotnot) which will speed up the whole process. However, I am fully expecting a very successful surgery (since we've basically already done it before earlier!) and I actually truly believe that it will be successful, I'm not just being blankly cheerful!

There is much much more to talk about, but I just wanted to break the blog drought and get started again. I want to talk emotions and stuff too, but I might save that for another blog.

In the meantime, please pray for a successful surgery next Tuesday!

As usual, apologies for being such a lousy correspondent... that will change while I have four weeks off to recover!

Much love,

Jess

Sad

2006-09-26T20:20:00.000+10:00

I'm a bit sad every now and again now. I think it's good, or at least healthy - I've not been sad enough.

It kind of feels like there's a big party that everyone except me is going to get to go to. And I can't go. And people will have fun and do things without me. And they might think of me every now and again, but I won't be there doing things with them. I'll just be a memory. And I don't want to just be a memory, I want to be there, I want to be in the middle of it all.

And so I'm sad.

I'm sorry Mama, I don't mean to make you cry.

And back to the real world...

2006-09-17T12:34:00.000+10:00

Well, New Zealand was a great holiday. Such a beautiful country. We flew into Christchurch, then drove to Timaru, and spent the night there, then drove down to Queenstown. We were in Queenstown for about a week, of which four days were skiing, and then drove back up to Christchurch by a different route, stopping frequently to look at the stunning vistas of lakes, mountains and oceans (sometimes in the one vista!) It was just magical.

It was also really good to get away from Sydney and the day-to-day routine. I was a bit snappy and irritable for the first couple of days (sorry Richard), and a bit teary during some of the middle days, but the last few days were really relaxed and peaceful. Oh, what a fun journey this is...

But you know, all these emotions are completely normal and there's nothing wrong with being a bit temperamental. It's all part of the process, and I can't move forward until I've felt and dealt with these emotions. And the past couple of weeks I've been much more serene and happy, and therefore much nicer to live with.

My support group is going really well. It's a great group of people and I get a lot out of the meetings each week. It's really very calming for me, and it's a safe forum to express some of my emotions and get through them. There is a retreat at the end of November that I'm quite keen to go on, and I'm quite keen for Mama to come with me. I think it will be good for both of us. The organisation running the support group and retreat is called Life Force - www.lifeforce.org.au.

There's also another course coming up that someone in my support group told me about - it's called Facing Death, Embracing Life. I'm trying to push a couple of people out of the denial closet (ie Richard) to come along with me. It's getting quite lonely being the only person trying to process and accept what's happening, so painful as it might be in the beginning, I'm really keen for people to start trying to deal with it. So Richard and Jacqui are both coming along - excellent! The course is run by Judy Arpana if you want to google it.

Otherwise, I'm back at work and things chug along there as usual. I've started a new 12-Week Blitz with Jacqui in the lead-up to summer, so I'm going to the gym everyday and eating healthily. I have a lot more energy as a result as well!

My next scan is on October 5th, it's a full bone scan as well. Bit nervous about it as always, but in the meantime life goes on.

Hope you're all well.

Lots of love,

Jessie xoxox

Life indeed can be fun

2006-08-25T18:26:00.000+10:00

Hello all,

Just a quick post, since I'm in the middle of getting ready for my exciting holiday... but I did want to touch base with everyone before I go away.

Sorry it's always so long between posts, I'm just so bloody busy at the moment I barely have time to sit down (apart from on the train). Work is busy, Rich has been travelling a lot so I didn't have a computer and I've had a steady stream of visitors.

I went in the City2Surf last week - walked 14km at a slow and sedate plod, but finished it, and raised $445 for the Cancer Council while I was at it. Richard and Jacqui ran it and did a fantastic job.

To tell the truth, I was really upset for a fair bit of it because I ended up walking almost the whole thing (4 hours) by myself. And that's a long time. I was upset because I was so slow and crap that no one would walk with me, even those people I knew who were walking wanted to walk much faster. And then it's a bit confidence shattering to be one of the last, especially since until April of this year I had been in full training to run it with Jacqui. But such is life, I guess. I have some photos (at work, I'm afraid) but I will post them up here soon!

And tomorrow we are leaving for New Zealand for ten days! I'm a bit worried that I'm still in lousy shape (following City2Surf mishap) for skiing, but the joy of skiing is that even if I do get tired, there's always the pub and the mulled wine - a fair chunk of the joy of skiing is in the apres-ski! And it will be beautiful as well.

And please note that September will be my anti-social month. For a full month I will be going turtle and reclusive and spending time by myself and with Richard. I will not be taking phone calls in the evenings or social engagements in the evenings or on weekends. If you would like to call me, please do so during business hours! This is absolutely nothing personal, I love all the people in my life, but I just really really need some time out!

Also, if I have a month without social engagements I will have more time to do the little things like respond to everyones' emails! I know I am very behind, and I'm sorry. But your emails and comments mean so much to me and really do keep me going. If I was a better (or at least less busy) person I would write back individually and tell you so, and I will do so as soon as I get back from NZ and start my Anti-Social September!

And starting very soon I will be keeping a video diary or video blog! ABC's Australian Story has asked me to keep a record of my life and I think it will be good to keep a visual record of the next few years as well. So exciting times ahead...

Be well...

Jess xoxox

On survival...

2006-07-27T20:58:00.000+10:00

Only a few months ago, I had survivor-guilt. Why me? Why did I survive? Why did I get a second chance when so many others needed it more?

Now I have survivor-envy. Although that's not really accurate. I'm not envious of survivors. I'm mad at the way society portrays survivors.

Don't get me wrong. I used to be a survivor. And it's very easy to do, to glorify the whole "I'm a survivor" thing. It feels like a great achievement, everyone is impressed at such a great achievement. To be a survivor is to be a hero.

But what is the thing that we worship about 'survivorhood'? It's the fact that a survivor has cheated death. Plain and simple. When it comes down to it, we are all so utterly terrified of death that cheating death has become the ultimate achievement.

But guess what? WE ARE ALL GOING TO DIE. It's not a question of if, it's a question of when. And how. A good life is not measured in how long we've lived. He who dies the oldest, does not necessarily win.

Why are we so afraid of death? It is inevitable, we will all do it someday. Why then can we not accept that it will one day happen, and incorporate it into our lives, our aiua, our souls, our selves?

Why is Lance Armstrong, who cheated death, a hero? Why is Dana Reeve, who supported her husband and family, as well as doing great things to raise the profile of quadriplegia, before dying of her cancer, a tragedy? Surely her life is amazing, something to be celebrated? Why then, is it that just because she did not live to be an old woman, her life was tragically cut short? Didn't she fill more into her life in her forty or fifty odd years than many people do in their eighty, or ninety, or a hundred and twenty?

Does it really matter how long we live? Surely the most important thing is how we've lived. Whether we've achieved what we wanted to achieve with our lives. Whether we've become the people we want to be. Whether we have loved, and are loved.

When people tell me that it's a tragedy that I'm going to die young, I hear them saying that my life so far hasn't been enough. That I haven't achieved anything. That what I've done so far isn't worth anything, and the fact that I won't get to do more is tragic.

Bullshit.

I have proved my intelligence. I have an excellent education and the makings of a fine career. I have travelled and seen the world. I have a sense of social justice. I have a faith. And most importantly, I have people in my life. I have an amazing family, all of whom I'm close to. I have a large and varied group of friends. I have the love of a good man, who I am extremely priveleged to share my life with. And it is in these people that my life's achievements are found. I am worthy enough that they love me. I am complete enough to love them too. I am open enough to have learnt from them. I have learnt enough to teach them too.

And that's not bad for a life's work. And as I learn more about life, and love, and death, I will grow more, and have more to teach. So in many ways, my life's work is just beginning. I hope you'll join me on my journey. My tragedy-free journey.

Les resultas

2006-07-20T20:12:00.000+10:00

Howdy troops.

I've been edgy for the past fortnight leading up to today's scan. Yesterday and today I was convinced that the scan would be bad. I've been really tightly wound up for quite a while now.

The scan went fine, no dramas, except my poor little 'good' vein is definitely on its last legs. I will have a bit of a problem when it dies.

The scan was clean - no sign of growth or spread in the lymph nodes, and only fractional (if at all) growth of the left ovary tumour. So it's still holding steady, or at worst, growing very slowly.

(That's good news.)

To tell the whole complete truth, I had been sort of hoping that the damn thing would just start growing and be done with it. Then I can just get on with the whole process. I haven't mastered the art of living with it yet.

But on the other hand, I definitely want as long as possible, so I need to learn to live with it. That's my challenge now. Learn to live with it hanging over me so that it doesn't consume my entire life and every waking thought like it does now. Learn to live with it.

I need to keep a list of things to do that help me regain my serenity and peace. Massage is an excellent (if expensive) means. So is meditation, and running away to read in a cafe. So is going for a walk. Chips are not.

So, learning to live with it. I can do this. Strength and serenity (my new motto, if you're interested).

I'm off to the snow tomorrow. I going to try to get through the entire weekend without talking about cancer a single time.

Back in the game

2006-07-16T11:19:00.000+10:00

It's been quite a while since my last post. Since I've gone back to work (about five weeks ago), I don't have anywhere near the same amount of time for blogging as I used to. But I miss it. So I will make a bit of a concerted effort to get back into it.

Although, truth be told, not much is happening right now. I'm back at work, and we're trying to make life go back to as normal as possible.

Although, while I'm throwing around phrases like truth be told, we're failing pretty miserably. It's so hard to live 'normally' with something like this hanging over our heads. But we are trying, and hopefully time will make it easier to do.

I'm really glad I went back to work, but at the same time, it's really tough. I use a lot of emotional energy being 'normal' at work, so I'm completely emotionally exhausted in the evenings and on the weekends. I also don't have time to unwind, or do things just for me. So that's really hard. It's also hard on Rich, because I spend all my emotional energy being normal and fine at work, so that when I come home, I'm spent and fractious and irritable. Plus I have nothing left to give and support him, and this is all at least as hard for him as it is for me.

So I am trying to do something about this. Any suggestions? I've started booking myself in for semi-regular massages. The problem seems to be the evenings - between seven o'clock, when I get home, and nine o'clock, when I need to be in bed (yes, I need nine hours of sleep to function), there is barely enough time to cook and eat, let alone do some exercise AND relax! So very open to any suggestions.

I've also got a bit of a 'fuck it, I'm dying' mentality, which means I've put on four kilos and I'm drinking too much on Friday nights. Trying to get out of this mentality, but it's difficult to say no to chocolate or chips or champagne - the whole 'keep yourself healthy' thing just doesn't seem to matter anymore. But this is definitely something I want to change - I'm telling you about it here so that in a few weeks I can post again and say that I've lost that extra weight and I'm not drinking at all!

On the plus side, I am doing some things I want to do. I've got my motorcycle learner's permit now, and this afternoon I'm off to a skills development course (on a closed road, I'm not ready for traffic yet!) to get a bit more experience on the road. It's something I've always wanted to do, and while I'm still getting a bit of opposition from various people, I'm really glad I'm doing it.

The plan - tentatively:
Work and save money till March. In March we have two weddings to go to. Then we'll do our overseas tour (but only for two or three months). When we come back, we'll go back to work until the tumours are big enough for chemo. Then do chemo (when I'll stop working, and probably - at this stage - won't go back again). Eventually, we'll move up to Mackay so I can 'retire'.

I had my last scan six weeks ago, and it was fantastic - the tumours have not grown, if anything, they've shrunk. So that's brilliant. My next scan is on Thursday, so I'll keep you posted.

Thank you everyone who is still reading. I'm not very good with people at the moment (that lack of emotional energy thing), but I'm hoping that that will eventually change and I will get to spend lots of quality time with you all soon. The fact that you're all out there thinking of me means a lot to me.

That's about it for me for the moment... I promise it won't be as long until I post again!

Much love,

Jessie xoxox

Bugger it, I'm coming out

2006-06-01T10:10:00.000+10:00

Yes, I am. I'm tired of hiding it. I'm tired of pretending that everything is fine. I'm tired of keeping two blogs - one that actually gets published, and one that I write just for me. Frankly, if you care enough about me to keep reading my blog, then you deserve to know the truth. Just as long as no one tells Nana.

My main reason for not going public is that I don't want everyone at work to know. So if, oh colleagues o'mine, you are reading this, please know that I do not want everyone to know. It's very difficult to process, and the last thing I want is for people to start treating me differently.

But by not talking about it here, I'm not able to express myself and therefore deal with it myself as well.

So, I'm just going to come out properly. At least, I think I am. I'll save this as a draft and have a bit more of a think about it. I am currently just writing 'personal posts' that I'm not publishing, but it's not the same. I'm not inclined to do it if it's just for me. But at the same time, I'm a bit wary of sharing too much with everyone.

So I guess here's the warning: THIS BLOG IS GOING TO BECOME VERY PERSONAL, AND IT IS NOT GOING TO HAVE A HAPPY ENDING.

Yes, it's true folks. Unfortunately, what I haven't been saying in the last couple of (stilted) posts is that my cancer is not curable. The reason it doesn't matter when we do chemo is because the chemo is designed to control the cancer, not cure it. There is nothing that modern medicine can do to fix or get rid of my cancer. Eventually, I will die from this.

Now, we are talking years here, not months. But we are not talking decades. Basically, the cancer has spread too far to be able to stop. Eventually it will keep growing and we won't be able to stop it.

The hardest part is that we don't know how long or when any of this is going to happen. Which is why I'm going back to work - my challenge is now to live a normal life with this hanging over me. But that is what I want to do - live a fairly normal life. My biggest worry is that people will start treating me differently. There are two options - we can all focus on the fact that I have a terminal disease and will eventually die, or we can focus on the fact that I am alive and happy, and live each day contentedly. I am not dead yet, and I really don't want you to mourn for me as if I am. It's really hard when people look at me like I'm a puppy who needs to be put down. Please help me to keep things normal.

So now that all that's out in the open, I can start talking about what's really happening, and what I'm really feeling, rather than the artificial happy chirpy stilted stuff that has characterised my last couple of posts.

It's good to be back.

I know, I know

2006-05-24T11:52:00.000+10:00

Yeah, it's been a long time. So sue me. I'm sitting in the public library (I didn't know there was an upstairs!) because the laptop at home has gone kompletely kaput. Rich is having a great time with the American call-centre to get them to fulfill the warranty. I swear, Americans don't even realise that there is a world outside America.

But that's not my only excuse, I have plenty more! It has been a very crazy couple of weeks. Last week Dave (my stepdad) came down for a week's visit, which was lovely. On Wednesday, however, the phone call came from my grandfather who had been looking after my brother Tim - Tim had appendicitis and was going in for surgery that afternoon. So we ran around trying to book flights for Mama to get back to Mackay. Timmy's surgery went well - he is now being encouraged to lie under a doona on the couch and watch DVDs all day - Tim's idea of nirvana.

Dave's operation is on the 30th May, so Mama should be well recognised at the hospital soon. Someone asked me yesterday if she was going for hospital frequent visitor points - poor Mama! I think she's a bit frazzled - three operations in a month is a bit much for anyone to cope with. I'm going to go up to Mackay on the 30th and be as useful as possible - well, I can cook and make cups of tea, anyway.

My big news is that chemo has been officially postponed. The cancers are currently two small to be seen in a CT scan, and opening me up each time we want to see how things are progressing is really impractical. So we could do chemo now, but then we would have to wait to see if the tumours grew bigger before we could assess whether the chemo had been effective. I've decided to do the waiting in the beginning - so wait now, and when the tumours are measurable, then I'll have the chemo, so we can assess its effectiveness as we go.

The reasoning behind this is that it really doesn't matter when we have chemo. The chemo will kill off ALL the susceptible cells - whether there are twenty cells or twenty thousand. So it doesn't matter how big the tumour is, it doesn't change the chemo's effectiveness. And since it doesn't matter, I'm enjoying being fit and healthy with lots of hair.

So the plan is to scan monthly, to monitor the tumour's growth. We have no idea how fast it's going to grow. With this type of tumour, growth is usually fast. All my doctors have been surprised that this tumoru didn't grow back two years ago. So either it grows nice and slowly in me, or it lay dormant for quite a while. Either way, there is every chance that it will do the same thing again - either grow slowly or lie dormant for a while. So it could be months or even years before I have chemo.

So that means I'm going back to work! After my six weeks recovery period, I'm going to go back to work and back to normal. I will have my first scan first, however, so that we have a vague idea of what the tumour is doing - if it's already growing really fast, I won't be going back to work - I'll have to go straight to chemo, do not pass go, do not collect $200. But at this stage it does look like I'll be going back to work in a few weeks.

In the meantime, we are still spending lots of time with family - my Dad, Beata (my step-ma) and sister Sophie were down last weekend. I keep forgetting how chaotic a three year old is! We went to the zoo and a few more outings. It was really lovely to see them. This weekend my beautiful Amy is coming down and we are going to get all dolled up and get some glamour shots taken. Instead of a tattoo. (Although I have to tell you, the tattoo was MUCH cheaper!) And then Rich's parents are down for a few weeks, which will be lovely.

Well, that's my allocated half an hour on the library computer used up, so more from me anon!

This just in...

2006-05-09T11:39:00.000+10:00

And now, the news.

We did actually find all of this out on Friday, but we've spent the weekend trying to process it ourselves as well as tell immediate family.

So obviously it isn't good.

The results of all the biopsies are in. My left ovary is also cancerous. There is also cancer in some of my lymph nodes, which means it's in my lymphatic system (or immune system). This is obviously quite bad news, it means that the cancer has spread.

This means more chemotherapy, which I was really hoping not to have to do again. We met with the chemo-oncologist on Friday. He is meeting with his fellow oncologists on Wednesday and then again on Friday to discuss my case, and then we're seeing him on Friday afternoon to discuss the plan for my treatment. So we'll know exactly what sort of treatment I'll be having (as well as the schedule) this coming Friday.

Chemotherapy is very 'scary' to most people. It's really not that intimidating. Chemotherapy is just chemical or drug therapy - large doses of drugs to fight the cancer. Chemo drugs kill off fast growing cells such as cancer cells. Unfortunately, it has a lot of side effects, because it's can't discriminate between fast growing cells, so things like hair falls out as well, the stomach is affected (thus the nausea), and the reproductive and immune systems are also compromised. But as far as treatment goes, it is pretty easy - my chemo will be intravenous, so basically I go to the clinic, sit down with a bag on a drip, and when it's absorbed I go home again. It's pretty easy, apart from the fact that it will make me pretty sick. I coped quite well last time though, and I'm fully expecting to cope with it this time as well.

One of the other implications is that since the only ovary I have is cancerous, we can't go ahead with the egg harvest. The chemo I'm about to have will probably affect my fertility, so I'm very disappointed and definitely very sad about that. Still, it's not certain that I can't have children - IVF technology is very impressive these days and even if I can't, there are stil plenty of options left to me anyway.

On the plus side, you'd never guess that I had major surgery a week and a half ago. I'm up and mobile, feeling pretty good. The wound has almost completely healed. I'm walking around with no problems, although I can't stretch upwards, or twist around, or bend down (shucks, still no dishwasher loading or vaccuum cleaning). So I'm very glad that the surgery happened in the beginning before the chemo while I'm still fit and healthy!

Bored now.

2006-05-03T15:53:00.000+10:00

Sorry, the blog has been quite unexciting for the past few days. Well, there's a very good reason for that - so has life at this end! I was allowed out of hospital on condition that I did absolutely NOTHING, and so I am. And it's quite pleasant, lots of reading, a trip out in the chair each day, a bit of time writing or surfing, and just hanging out with my Mama - but it's not particularly
newsworthy!

We've also had some wonderful people over to visit - Rachel came over last night and brought the makings for all of dinner - it was definitely a new thing to invite someone into my home and have them take over the kitchen! But much appreciated all the same!

We are going to see the oncologist on Friday IF the pathology results are back. I will have more to report on Friday when and if we see Dr B.

Till then, I'm just industriously healing...

From left corner of couch, with love

2006-05-01T10:25:00.001+10:00

Hello all,

Not really much to report. I am doing ABSOLUTELY NOTHING as instructed, just curled up on the couch for most of the day, with the odd foray to the balcony for vitamin D and to the study to update you on the couch-sitting.

I'm still in a fair bit of pain, and movement is obviously still quite restricted. However, it's just a matter of time and healing now. Mama is looking after me extremely well - she's cooking all meals, made biscuits and date cake for any guests, cleaning, even did the hand washing that's been sitting in the sink for the past eight weeks!

I do have a new email address - jdisteldorf@gmail.com. The old hotmail account is so full of spam it's virtually unusable now. Drop me a line, I'm home all day! I'm also open to ideas for writing while I'm off work - loving the foood blog idea, Nette...

Hope you are all well.

A Day in the Life of a Wheelchair

2006-05-01T10:25:00.000+10:00

Hello all. Since I'm confined to the couch, the only forays I can make outside the apartment are by wheelchair. I thought I would take this opportunity to experience life from a different perspective and report back on some of my findings.

1. Day One
2. Day Two
3. Day Three

I'm free!

2006-04-29T18:50:00.000+10:00

Well, it's been a while since I've last posted, and most of you know why. Far be it from me to do something simply.

I went into the hospital on Wednesday. I'd convinced Rich to not go to Dubbo, and I'm really glad I did. I just really wanted him to be there - just in case. Just in case what, I'm not sure, I just know that I really wanted him to be there.

So we went in bright and early on Wednesday morning, checked in at 7am, and then began the sitting around in the waiting room game. I went in at about eight, and that was me out for a couple of hours. I woke up at about two (expecting it to be about nine, since it was only a half-hour procedure) and in a lot of pain.

My surgeon (gyno-oncologist) sent in the camera, and could see pretty quickly that it was cancerous. The tumour was in my right ovary and was quite self contained. It was a fairly simple procedure to take it out, but surgeons can't do anything like that without a patient's consent. Since I was comatose, it was time to make some calls...

Rich had gone to the park to wait while I was under. Dr B called him, explained what she wanted to do and pretty much demanded (not asked) permission. There really wasn't much choice. Rich panicked a little, and said that they should really talk to my mama. So Mama was rung (instant heart attack material - telephone call on the mobile from your daughter's surgeon), and she agreed to the procedure. Basically, if we didn't do the procedure then, we would have done it in about four weeks anyway and I would have had to go through the whole thing again, only it would have had time to grow in the interim. So it was all systems go.

Dr B cut me from navel to pubic bone (quite neatly) and went in and removed all the tumour. She took out all that was visible, and then took biopsies from the left ovary, uterus, liver, and probably a whole bunch of other things. She then sewed me up quite neatly and I began the waking up process.

And boy, was it unpleasant. I was in pain when I woke up. People would come and speak to me, but the only thing I could say was "pain". I started saying it to people who were just walking past. They put me on fentanyl pretty quickly. Does anyone remember the chapter from my first journey on fentanyl? Yeah. Well. Fentanyl doesn't work for me. I don't know why, but we have officially confirmed it. Fentanyl DOES NOT WORK. My first day out was extremely unpleasant. I had a constant agonising pain in my stomach. I'm not good at describing pain, it all seems a bit cliched to me - my stomach was on fire, it felt like a rod of red-hot steel - none of it really describes it. It just fucking hurt. I really could think of nothing but the pain. Dr B tried to explain what she'd done - nope, completely uninterested. All I could think about was the pain and making it stop. Eventually the pain management team came and I was eventually switched onto morphine (apparently they don't even stock pethidine at the hospital). Things settled down a bit after that and I could think about something other than the pain. Richard could explain what had happened and I could take it in then.

Poor Richard. It was so hard for him to see me in such a state - he said it absolutely terrified him to see me so helpless. Once I came around I was stoned to the hilt as well, so definitely not my usual self. I think he really struggled to sit around and just be, with nothing he could do to help except be there. Brad came at about three, and I think that really helped Rich, just to have someone else who cared to just sit around quietly with. I vaguely recall telling Brad he could hold my foot. I remember it being nice and peaceful, with people who loved me there, but not making demands, so I could just drift in and out of consciousness. Jacqui came after work, and stayed with me while Rich went to pick Mama up from the airport (she booked the first flight she could down). They came back to the hospital late that night, so I could see Mama before I went off to sleep. It was so good to see her - it doesn't matter how old you are, there are times when a girl needs her mama, and being cut open is definitely one of those times.

I had a bad night - I was still in a fair bit of pain, and I had one of those nurses who really shouldn't be in the profession. She wasn't unpleasant, or mean, or anything like that, just - indifferent. No real interest in what she was doing or the people she was dealing with. Never smiled. Indifferent. And because I was fresh meat on the ward, I had "observations" (obs) every half hour or so - blood pressure, pulse, temperature. The change of shift at about midnight were quite nice, and a couple of nurses stayed for a bit of a chat when they noticed I wasn't really sleeping. I continued to drift in and out all night but didn't really get much quality sleep at all.

The next morning, something wonderful happened - the nurses came to give me a shower. It was awkward, it was painful to move - but oh, it was wonderful! The hot water! The clean feeling! Just bliss. With all my tubes and connections, it was awkward and difficult to negotiate, and it was definitely painful to get out of bed and move around quite so much, but it was lovely. Never have I enjoyed a shower so much. I then sat up in a chair for a couple of hours and felt like a proper big person again. (I then spent the rest of the day in bed, dozing, but hey, it was a start.) The day before, I had had no food. I didn't really notice that I was particularly hungry, but it felt a little strange to not be eating. Thursday, I started my clear fluids diet. Yum. Not. Vegetable broth and green jelly. I was so excited at the thought of getting fed that I didn't mind. Come chicken broth and red jelly for dinner, and I was less excited. Friday's tomato and rice broth with green jelly and I was OVER it.

Interesting thing about abdominal surgery. They pump you full of gas and move all your intestines around. They need to be sure that your digestive system is working again. And how do we tell this? When all that gas they've pumped you with makes its way through. And they won't feed you till it does. Yep, no farty-farty, no foody foody. Nice. And EVERYONE asks if it's happened yet. So, I got real food on Friday :)

I was feeling pretty good on Friday. I got my catheter taken out in the morning, and was doing well with the pain management, so I got my IV line taken out in the evening. I was free! Dr B came to see me, said I was doing good, and said I could go home the next day - on one condition. I was to do NOTHING. I was to lie around being waited on hand and foot by Rich and Mama. I agreed quite enthusiastically.

Today (Saturday) was frustrating. We knew we could go home, but still had to wait for the hospital pharmacy to give me my drugs. It took till 1.30 this afternoon, but the moment they came, we ran. I am free!

I am not allowed to walk anywhere until a full week after the surgery. No lifting, bending, stretching for four to six weeks, the longer the better. Normally people who have this surgery don't leave hospital for about a week, but my philosophy is that if others are doing it, then I'll do something completely different, thank you very much. There are some benefits to being young, fit and healthy when it comes to major surgery.

So, here comes my week of lounging on the couch, reading and watching movies! Jacqui is bringing me a box of Enid Blyton-style childhood books, which should keep me endlessly entertained! I am healing well, feeling quite good, and most importantly, I am home again.

Much love,

Jessie xoxo

Addendum

2006-04-25T20:43:00.000+10:00

Well, it's the night before my surgery, and I've had a bit of feedback on my blog - namely, yes, Richard will be there - he has cancelled his trip to Dubbo to stay by my side. He is a good boy. We will be at the hospital at seven to check in, and then my surgery is due to happen at 10.30. It should only take half an hour or so.

Best case scenario is actually major surgery tomorrow - if it's just a fibroid, then the doctor will take it all out tomorrow, in which case I'll stay in overnight and spend a couple of weeks recovering, but then it's all over. If it's not definitively a fibroid then she'll just look at it, maybe take a biopsy and then we'll have more and bigger surgery later.

I'm happy that everything is all happening, but it's all a bit spread out... the laparoscopy tomorrow, the egg harvest in about two weeks, and then the major surgery about two weeks after that. That's actually quite fast, but it does mean that there's a lot of waiting in between.

I've had a great weekend - planning for and having the party, Anzac Day, sorting out the egg harvest - and now the surgery tomorrow means that I'm brutally coming back to earth and facing the reality that yes, this is all happening. So I'm a bit all over the shop - a bit scatty, a bit irritable and yes, a bit worried. But it really is a small operation tomorrow, and afterwards we should know a lot more about what's happening! I'm just coming out of my denial phase.

So that's it from me for the next day or two... Next time I post we should know a bit more!

Lots of love...

Jessie xoxox

Just another manic Monday...

2006-04-25T14:42:00.000+10:00

Well, it is all happening! I've started hormone treatment, as discussed in the last blog. So far so good, the injections are pretty easy. The nasal spray tastes completely disgusting, but that's life.

Tomorrow (Wednesday) I go in for the laparoscopy! It's all happening a bit fast now. I've spent the last weekend not thinking about the actual surgery, being all happy about the harvest and planning Sunday's party, but now I need to actually think about the bloody tumour in my belly. And I'm a bit nervous about the whole thing. It's been a while since I've been under anaesthetic and while I know that I've handled it fine in the past (six times now), I'm still stupidly worried about the whole thing.

We met with the oncologist on Monday. She said that if it looks definitively like a uterine fibroid, she'll biopsy it and potentially take it out then and there if it's easy to do. If it's really ugly, already spreading and looks definitively cancerous, she'll probably biopsy it too, so that we know for sure what it is and can continue on with a bit more knowledge. If it's somewhere in the middle, she'll just look at it, no biopsy at all.

I'm tentatively booked in for surgery on the 19th May. It seems like a long way away, but it has to be after the harvest, which will be two weeks from yesterday, so the 8th May. Westmead is cost cutting, so have cancelled all surgery on the Friday after that - the 12th (my oncologist is only in surgery on Tuesday and Friday) and naturally the following Tuesday is already fully booked due to the cancelled Friday. So Friday the 19th it is.

There's some emotional stuff I want to talk about too, but we're going out for the traditional Anzac Day BBQ, so I'll write more tonight.

Be afraid... be very afraid...

2006-04-23T18:06:00.000+10:00

What a nice weekend... I've just said goodbye to my lunch guests. Spent a lovely day yesterday planning, list-writing and cooking (my idea of heaven - coordinating stuff, bossing people (Rich) around and cooking... bliss) and then today with good company and far too much food (quoi de neuf). Rich and I are off to a movie tonight and then I've taken leave for tomorrow and then Tuesday is Anzac Day!

Well, amazingly, it has been a very eventful weekend! Normally nothing happens medically on the weekend, but this time it has! I called my oncologist repeatedly on Friday to find out what was happening with the laparoscopy. She rang me back Saturday morning, complete with her two-year old screaming in the back ground to tell me that she can fit me in on Wednesday. Hurrah! So I rang the fertility clinic, which is open 7 days a week (since apparently women's periods won't behave and fit into the nine to five, Monday to Friday time slot) and they saw me today (Sunday) to teach me how to use all the drugs! So from tonight, I take a nasal spray that will suppress all my natural hormones, and from tomorrow I start injections that will stimulate egg growth. I enquired as to the extremely remote possibility that I will turn into hormonal cranky bitch, and the nurse assured Rich and I that I would indeed turn into a very scary women and recommended flowers and footrubs. PMT on speed apparently. Nice. Mama seems to have reversed her desire to come down as soon as possible and now wants to stay away until I've finished fertility treatment. (I'm joking, obviously. Mama would be down here within the hour if I asked.) Please be nice to Rich in the next two weeks!

So that means that we'll be able to harvest eggs in about two weeks, and then the major surgery will follow from that! I am extremely relieved about the egg harvest, one less thing to worry about. The whole infertility question was the big thing that had concerned me all last time.

Naturally, the speed at which this all occured is due entirely to Rich booking flights to Dubbo to watch the plant out there pour their first batch of concrete - so he won't be in town for the laparoscopy. And yes, it is fairly important for him to go - one of us has to be advancing our careers during this time! So a good friend of mine has very kindly offered to spend the night Tuesday and then come to the hospital with me on Wednesday. I'll probably spend Wednesday night in hospital and come home Thursday. I don't know whether I'll work on Friday yet - have to wait and see how I feel.

As I said, work has been very understanding. I'm a bit frustrated at the timing of it all though - I've been working on a couple of projects that are due for completion in the next couple of months, and it's highly likely that someone else will now implement them instead! But I guess it is a question of priorities, and my health is the most important thing right now. But it is bad timing.

Thanks Auntie Anne for your comments! I really do love writing and I have never dedicated the time I should to it. I only half finished Lucas the Legoman which I started when he was born and is now far too old for. The tale of Lucas the Legoman who got left behind under the couch and had to battle all the monsters (the cockroaches, giant dust balls, the vacuum cleaner) to get back to Lucy the Legolady! Really should finish that.

Well, I am meeting with the oncologist tomorrow to find out more about the laparoscopy and sign all the scary consent forms, so I will update again tomorrow when I know more!

Another day at the office

2006-04-20T19:15:00.000+10:00

Howdy all.

Quite a good day today. I went into work today and actually felt like I achieved something today. I've been feeling bad because this week my work has been quite sporadic, since I've had so many appointments, but I got some stuff done today. Of course I had to leave this afternoon to go see a new specialist, but I did have a very productive morning :-)

Off to the fertility specialist this morning. Looks like harvesting eggs is going to be relatively straightforward, and more importantly, we can do it concurrently with the laparoscopy so no time delays. Just a bunch of injections (done by moi!) everyday for a couple of weeks and some easy surgery to pull 'em out. No dramas. Basically, females start off with a couple of hundred thousand little eggs, then gradually they die off. Each month you release between half a dozen and a dozen, of which one of it makes it as a big egg, and the others die off. The drugs I'll be taking will make all of the half-dozen or dozen released eggs big and then they can be extracted (not sure of the exact surgical procedure, but it's done under a general, and should only be an overnight stay). Obviously I turn into seriously hormonal cranky bitch girl during the heavy hormone injection period, but presumably nothing too much out of the ordinary...

I am now trying to get in touch with my oncologist to organise a time for the laparoscopy. Ideally that will happen next week, then the week after I can have my surgery to harvest the eggs, then the week after the surgery to pull the baby alien (as I know think of the tumour) out. In an ideal world, of course.... I'll let you know tomorrow what sort of time frames we're looking at in the real world!

Thank you for all your messages of support. My family and friends are very special to me, and I feel very blessed to have you (uh oh, starting to sound like bloody Delta or Kylie!). I really do love you very much!

Why we are called patients...

2006-04-19T15:38:00.000+10:00

What a frustrating day! So ridiculous. I had my appointment with an oncologist this morning at Westmead Hospital. He was a lung specialist, since the thinking was if it's cancerous, it's the same cancer. He and his sidekicks (I know they're registrars, but it's much cooler to have sidekicks) looked at my scans, asked me lots of questions about other symptoms (none) and then decided that since it was no longer in my lungs, it should go to a gynecological oncologist. Luckily, she could see me that afternoon. So, I called work to say I'm not coming in this afternoon after all and waited patiently to see the next oncologist.

She is really good, and knows her stuff, and I like her and would be very confident in her care. Unfortunately, she knows her stuff a bit too well - ie she is a gynecological oncologist and that's pretty much her entire sphere of reference so that's all she's focussed on. She seems to have all but dismissed the whole cancer in the chest thing, and is treating the tumour as if it was a fibroid growing from the uterus. And if I was a normal healthy female that would be fine - except that I do have a history of ruddy great tumours in odd places that happen to be cancerous! So I would really like her to have a little bit more of a focus on that issue and a little less on trying to fit me into a box that she understands better.

I suppose it's only natural - everyone has their little area of specialty and no one wants to treat me unless it falls into their area and if it doesn't then we can just think about it differently so it does.

Anyway, the good thing is that she's taking my desire to harvest eggs quite seriously and is booking me in to see a fertility expert straight away, before anything else happens. Unfortunately, this takes even more time, plod plod plod. She then wants to do a laparoscopy to look at it before we go in and take it out. I kind of think this is a waste of time, since I don't want to do a biopsy, but it's a simple procedure and I think looking at it will give us an idea of whether I do need to harvest eggs immediately or not and give us an idea of the urgency of the situation.

So, she will call me in the next day or so with a referral to the fertility guy, and then I'll see him to discuss what needs to be done fertility-wise.

I know to a lot of people all this mucking around with fertility seems like a waste of time, but it's very important to me.

Jess getting ready for the races!

2006-04-16T15:26:00.000+10:00

Emoting 101

2006-04-16T10:26:00.000+10:00

I'm not emoting very well. I'm still a bit numb. To be honest I just don't think I'm ready to think about or deal with this at all yet. So I am constantly doing something... anything, as long as I'm not sitting quietly and thinking. I know I'll feel a lot better once I do think about it all, process it all and maybe actually CRY, but it just seems all too painful and hard and I keep putting it off.

I did start emoting a little bit yesteday. I went to the races with a group of girls (I've spent over a year in Sydney, and now that it seems that I actually have a group of girlfriends, I have bloody cancer to prevent my enjoyment of it. Sheesh.) and tried not to think about it at all. About half way through the day (probably assisted my champagne), I actually experienced an emotion... guilt.

Yes, I feel guilty. I feel guilty for being sick and throwing my life out of whack. I feel guilty for disturbing the happy little life that Rich and I are making here in Sydney. I feel guilty for making friends here in Sydney, then getting cancer and then asking for support. I feel guilty because I'm trying not to think about the cancer thing, so I'm not calling people to keep them up to date. I feel guilty for making other people think about this, and support me. I feel guilty for demanding attention. I feel guilty about asking for special treatment. I feel guilty for being different. I feel guilty for upsetting the lives of other people. And I feel guilty because I'm numb and not crying and screaming and generally being upset like I feel I should be. I feel guilty because I want to isolate myself and pretend it's not happening, and at the same time I want my loved ones around me.

Hey, it's an emotion - it's a start. And I know it's not a constructive emotion (it's a bloody stupid emotion), and it's certainly not a rational emotion, but it is an emotion, and that's a step in the right direction.

Jess's First Journey

2006-04-14T13:31:00.000+10:00

As you know, this isn't the first time I've travelled the cancer journey. Here's an account of my first cancer journey, back in Brisbane in 2003, written in 2003.

Jess's First Journey
1. Life before
2. Finding it
3. The first biopsy
4. Between biopsies
5. The second biopsy
6. Chemotherapy
7. Radiation
8. Surgery

Guess who's back...

2006-04-14T10:23:00.000+10:00

Well, hello all.

I remember thinking a couple of years ago that I should have kept a diary or a blog or somesuch of my journey through cancer. But by the time I thought it, my journey was all over and I was moving on with my new life and there was no need to rehash over it all.

You should be careful what you wish for, because I've now been given a second chance to write this blog. That's the good news. The bad news is that since I am now writing this blog, it does mean that I've embarked on the cancer journey again. AGAIN.

Yes, it's back... back again. Cancer's back... tell a friend. (Song of the week: Eminem - Without Me.)

So, what happened? On Tuesday 4th April, 2006, I woke up with some fairly major abdominal/pelvic pain. I'd had the same pain three weeks earlier, but assumed it was period pain (for the first time in my life). This time, though, there was no valid explanation for it (not time for my period) and it was quite ridiculously cripping. Every couple of minutes I'd get a wave of sharp stabbing pain up through my stomach - and it was especially bad whenever I moved or changed position or walked. I went to work that day (I had my six months performance review) but was in a lot of pain all day and it was very difficult to hide. I took the next day off and went to the doctor.

The doctor did an internal examination (I mean, where do you look at such a time? I find I get the urge to crack jokes about taking me out to dinner first) and felt what he thought was an enlarged uterus, so sent me off for an ultrasound the next day. I went to work on Thursday and left early for the ultrasound.

Ah, what a flashback the ultrasound was. The test was fine, pretty easy (apart from the drink a litre of water two hours beforehand and don't go to the toilet - and then we'll poke and prod your stomach thing) but afterwards, when everyone there told me that I MUST GO STRAIGHT BACK TO MY GP (four times)... well, I've heard that before, and it ain't good.

So I went straight back to my GP, who confirmed that yes indeedy, there was a 7 by 8 by 9 (later confirmed to by 12 by 8) tumour chilling out in my belly, on top of my uterus. How to ruin someone's day in one easy step.

To make it all worse, Richard was away. He'd left on the Tuesday to inspect a bunch of concrete plants up and down the NSW coast, and wasn't due back until the following Thursday. So I went home to an empty house and tried to come to terms with the fact that my life had just turned upside down.

Naturally, I didn't like that idea much, so rang Jacqui to come out and spend the evening - with the obligatory trip out to Max Brenner. (I am trying to stop using food as comfort/reward/procrastination whatever, but it didn't really seem like the time... say what you like, chocolate souffle really does help at times like that.) So not alone for the evening.

Friday was a really really really lousy day. I went in for my CT scan, and the doctor took five attempts to get a line into one of my veins. I was struggling not to cry as I waited for the CT to start - the whole CT alien abduction experience really hammers home the fact that I have cancer again. And I was on my own, scared and really really angry that my life was going to be highjacked again.

Back to my GP, who asked me to ring my oncologist in Brisbane. Now James Morton is a fantastic doctor, but there is a reason we call him the roadrunner - he is frantically busy and always running around. It was 5 o'clock on a Friday afternoon, and as soon as he finished work, he was off on a two week holiday. So I guess it's understandable that he didn't have time to refer me to an oncologist down here, but not having the name of an oncologist slowed down the process a lot.

I had booked flights for a weekend in Brisbane that weekend. I was determined to have a good weekend - the denial weekend. The first time I had cancer I spent the denial weekend with my family on the Gold Coast. The denial weekend happens when suddenly all you can do is wait, and there's no point dwelling on it all, so you go off and you have a weekend of constant action, never stopping to think about things, and the whole thing feels slightly hysterical.

Anyway, I had a great denial weekend in Brisbane. I told everyone, but I definitely put a major positive spin on things, and made it all out to be something that would be over quickly, just a quick surgery sometime soon. And I really hope it is.

Monday at work I told my boss, who was fantastic. He told his boss, who told her boss, who agreed that I could have as much sick leave as I needed. This is a very big thing since I have absolutely zero sick leave left (I did have three days but I used it all last week!). Now I won't have to worry about coping financially while I'm recovering from surgery - if my employers hadn't come through like that, I would have had to take sick leave without pay. They have absolutely no obligation to give me that sick leave, so I'm extremely grateful.

Tuesday, I told some of my friends from work. I was a bit nervous, because last time some of those who I thought were good friends simply dropped off the face of the earth, unable to deal with it. I haven't known them long, but they were fantastic - actually said all the right things! Rachel saw right through me, and told me very sternly that I don't need to pretend to be strong all the time and that it is actually okay to crumble every now and again with her. Then we went to the pub (2for1 cocktails on Tuesday night) and drank far too much on a Tuesday night... I got home late, but it was definitely better than being at home by myself.

Wednesday, things started happening. My fantastic GP, Dr G, had spent Tuesday trying to find an oncologist for me. On Wednesday he found one, made me an appointment for the following week, and called me in to his surgery to discuss. The oncologist wanted a CT of my chest, a full bone scan and a biopsy, so we made appointments for all of it for the next day.

So, Thursday, I rock up to the x-ray clinic at 8.30 (fasting), and go in for my first scan at 9.30. I'd forgotten how much waiting around there is. So I had my chest CT (with no contrast, which means no prodding around in my piddly little veins) and then toddled off to nuclear medicine for the first step of the bone scan.

There's something really really wrong with being injected with a substance from a lead syringe. Surely, if this stuff was safe to disperse through my body, it should be safe to carry it around in a normal container? Hell, no, this stuff is radioactive. So I have my radioactive shot and I'm free for a couple of hours while the radioactivity works its way through my body.

I really want someone to play "Radioactive Girl!" with, but there's no one, so I go shopping. I'm planning another denial weekend, complete with trip to the races, so I go shopping. I need a hat or a fascinator, preferably fairly cheap, since I'm pouring money into the coffers of the medical industry. So, one fascinator, sunnies and some bangles later, I'm back at the x-ray clinc for my bone scan.

I jump up onto the alien abduction guerney, they position my body and then the machine, and then I... go straight to sleep. Yes, I do. And I snooze on and off for the next forty minutes while they reposition the machine around me. Then back out to the waiting room, where I wait for another hour while they write up the reports, then back home.

Finally Richard comes home... tired and grumpy after driving for seven hours, but I'm so happy to see him. I was really getting sick of being on my own and trying not to think about things. Unfortunately we need to go straight to the GP again, so we do, to talk about today's results.

My chest CT was completely fine - the original cancer has not returned. The bone scan was not so good. There appears to be a spot on my clavicle (collarbone). There are two reasons why this could be there - it could be radiation damage from the original radiation. I need to call my original radiologist and find out whether the clavicle could have been hit in the first round. Otherwise, it could be the nasty nasty m-word - metastisis. It could be a secondary cancer, which does kind of change the whole ball game we're playing. If it is though, it's an isolated, single secondary - which is very unusual. More normally there would be dozens of little metastises running through my system. More tests to follow next week.

So that's where I am at the moment. Richard is back thank goodness, and we're going to enjoy our Easter long weekend.

More later!

Much love,

Jess