To die or not to die

So...

I can't lie, today wasn't great. Really not great. I actually cried for the first time in an appointment which I'm now looking back on and cringing somewhat because I did look a bit silly. What a mess. I'm not a crier. I think that's still only the forth or fifth time I've cried in hospital (and probably the first time I've cried because of my illness and not because I'm angry that I can't order a Chinese takeaway or lift my arm for long enough to apply enough glittery eyeliner) so yeah, a bit of a day. A lot of a day. A fucktonne of a day. I don't know. I'm still taking it all in because it had been a lot more emotional than days with Constanze usually are. Today the jolly robot fell temporarily. I've been perking up since I escaped the hospital a few hours ago (and will no doubt be fine again tomorrow, especially when I've eaten my own body weight in Cheerios) but I guess no matter how I put it to the universe and my mental THERE'S TOO MUCH JOY AND HAPPINESS FOR ONE CEREBRUM brain today was a bit of a pile of Tasmanian Devil dung.

Reality is a right slaaaaaaaag.

Basically you know how the past year has all been building up to this big dream that they might be able to wean me off my chemo drugs and (whisper this) there might be a small faint hope that I could be cured? Yeah, scrap that. Today took a nose dive and hospital have basically done a big U turn and decided it's a really bad idea and we're not doing that anymore. Not even a U turn. An L turn. As in before they were slightly hesitant but we fully supportive of my gambling dreams of not having leukaemia. Whereas now they've become spooked and say it's a very bad idea and that I really shouldn't do it (which I'll talk about more in a second). Which I am of course respecting and doing. Because it's no longer a bit stupid, they now think it might be more stupid. Or more likely to be more stupid. Or something. But anyway, I am staying on all my drugs for at least a couple more years,

A few of my doctors have been to some thing in Europe where they've been discussing cases like mine and some preliminary studies have started coming out about people like me but not quite like me. As in people who have been coming of my drug but with different forms of cancer. So slightly comparable but not really. Basically in some other group of people about 50-60% of people who stopped taking my drugs were fine two years after. But they had a different thing to me. So it's sort of a useless statistic. To be honest I'm not really sure what's made them suddenly go so negative about the whole idea but they seem really serious about me not doing it. And my stubborness is not more important than the opinions of many medical professionals.

I am obviously a bit devastated about this. As eager as I am to one day not have leukaemia it might take a little while to fully digest the implications of this. They say that they mainly want to wait for more studies to come out over the next couple of years so they can better assess the risks involved. Which the scientist in me completely understands. My whole viewpoint on the stopping/not stopping dasatinib debate does however seem profoundly unscientific; here I am on a drug that makes me quite well yet I want to do the crazy thing and stop it and cross my fingers lololol. Or maybe that is scientific. I am the experiment. There are plenty of people who have made themselves into their own little experiment. That guy who chopped his own appendix out in the arctic. I'm like him but living in the slightly less chilly Luton and I don't get as many knives. KNIVES.

It almost seems quite a few people have the opinion that my attempts to stop taking chemo are a bit hippy-ish, like I'm trying to do some all-natural approach, ditch the drugs and be free like some weed stinking love bird. Which obviously annoys the hell out of me. And I'm so sick of people saying "oh, but what are the actual side effects of the drugs you take?" as if because I feel quite well I'll suddenly forget I have a chronic illness that'll probably kill me. It's so difficult and so easy to explain all in one. The reason I don't want to take my drugs any more isn't because I've suddenly joined the flower power 1960's, it's not because I don't like taking tablets, and certainly not because I'm suddenly hell bent on having a beautiful tragic death.

I just don't want to have cancer anymore.

And that was sort of taken away from me today. I mean, we've never really talked about my illness in terms of me being cured. That was a sort of maybe vague possibility that might happen if I was lucky but really because my illness is so severe and so rare it's always been about keeping me alive and not really about me building a future. It's always been about the here and the now and what my bloods are today and whether I have an infection and if I'm in next Tuesday. It's not been about the fact that my life has been on semi hold for six years. My whole adult life.

And that's why I hated answering the same question from people over and over again. All the doctors say over and over and over "Oh, why do you want to stop taking the drugs when you're so well?". Why do I want to settle for being well when I could be cured? Almost like I'm being silly for not wanting Mr Cancer lurking over my shoulder every waking moment of the day. But I guess now it's just frustration. That the flames of that dream have to be extinguished.

So, I go back to how it was a year ago, before Naomi died and before the spark was set. I'll soon readjust to the notion that the very fact I am still alive six years after such a dire diagnosis is the most exciting thing in the universe. I spoke to one of the teenage cancer nurses today and she said they'd had more deaths this year than she could ever remember. I've known almost all of those people and they were all wonderful. All with this mix of severe resilience and frustration about the weird and unfortunate hand we got dealt in life.

It's almost funny. Still, none of this seems unusual to me. Cancer still isn't the worst thing that's happened to me. Today still wasn't the worst day of my life. It was a setback, maybe, a little punch in the face that my illness really is here to stay in a big way and that whether I like it or not it'll be playing a rather inconvenient role in whatever's left of my rollercoasterparty of a life. Or not. It's sort of like leapfrogging from one lillypad of uncertainty to another. Rolling from Iran into Iraq.

But yeaaaaaaaaaah, I need to stop rambling and go to sleep. When I wake up the past year will be over. Tomorrow is the new leaf. The new day full of new things and new adventures and new parties to distract me from the haemogoblins. Aieeee and woohoomalarky.

I'm actually going on holiday in a few days and I can't wait. I can't wait to just be on my own and hide for a bit. As much a I love people and the universe you can't beat a good hide. Ukraine, Georgia and Armenia. Excellent hidy-holes. Many caves and mountains. There are appeantly also ten leopards left in the wild in Georgia and I am going to befriend them all. Or get eaten by one. Which is better than dying of cancer. I think. I might get four lines in the Daily Mail!

Goodnight and farewell and toodlepip,
Your ever optimistic Stanzistan :) xXx

P.s Actually, today wasn't all bad. I won a free lunch AND I found a lucky penny. The penny was however still quite disconcertingly warm from the larger person who had been sat on it for quite some time. Not sure how that affects luck :D