The Ten Best Things About Having Cancer...

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

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...

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

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...

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!

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...

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