Cancer is a Punk Rocker Now

Well well well ducks...

What a few weeks I've had. Mental. Wahoozled. Confuzzled. The dreaded appointment of important things has been and gone and I am now on what I should probably honestly describe as a bit of a low. Ok, a lot of a low. A little better today actually. But yesterday in hospital, jeez, I was a messier mess than Mr Messy on messy messy Mars. No man's land is sending me bananas.

But yeah, yesterday. It was a strange one. I got on the bus and fell asleep and woke up dribbling profusely and then got on another bus and didn't dribble at all. My blood pressure was perfect, my handbag was nice and as usual they tried to give me staff discount on my cooked breakfast. They couldn't find my notes because there was general confusion about whether I was in or not; they'd changed my appointment to the 20th but I'd begged to have it moved back as a) I'd already booked my expensive train tickets and b) I really wanted this appointment to happen very soon please and mysteries were aplenty. But when they say me appear at the door, definitely there and alive balls started rolling.

I went in for my appointment and my consultant called in another consultant so we could have a general chit chat about the come off chemo-stay on chemo situation. It soon became apparent that it was their opinion that if they were making the choice, they's stay on the drugs, and that if I did do that they'd probably keep me on them forever. I remember vividly one of them saying that he had a patient that has been alive for 14 years on them! Wow! 14 years! I've been on them for nearly six so I can optimistically look forward to eight more years of not dying. I suppose 32 isn't a bad age for someone who's had my funny blood, can't complain :) But that's irrelevant anyway because my mind is made up and I'm coming off them. I was pretty adamant with them that I didn't want to stay on maintenance chemo forever; as I've mentioned I need the closure, it's time for cancer bye bye. It's kind of strange how my prognosis and plan of actions has morphed over the years, from them saying these drugs would stop working after a couple of years to proposing I stay on them forever. But nah.

As regards coming off them no one really has a clue what'll happen (to be honest they don't really have a clue what'll happen if I stay on them but doctors love being cautious) because as they put it I'm a "unique case". No one has the cancer quite as awkward as Constanze. It's strange to hear them go from saying how bad my prognosis was and how amazingly I've done to them thinking I'll probably be fine if I come off them to we might go back to square one. Basically no one knows. No one can give me answers because I am my own test subject. And that's not a reflection on my doctor's abilities, christ no, they're utterly phenomenal and amazing, it's just pretty much impossible to see what's going on with me on a molecular level. As I've mentioned before most people's illness can easily be tracked through their blood, but oh no, not Constanze. No one can work out the mysterious ways of my blood. There is one thing that rings throughout my head though.

"The chances of you being fine if you come off are at least 50%, probably higher"

Now, would you bet your house on 50% odds? Lord, would you bet a fiver on 50% odds? And here I am betting my life on it. Oh me. I think they think I'll be ok though. They haven't detected anything bad for years now and I've been very stable so the odds are probably much more in my favour than that. We're still working out a plan and I'll be monitored very closely, probably every month (which will be very weird as I'm currently only on three appointments a year). They're going to halve my dose to begin with and see how that goes. Hopefully it'll all be very underwhelming, I'll just slowly stop taking them and nothing will happen. And most crucially of all, I won't have cancer anymore. Do we even dare to dream?

So yeah, right now the phrase "stuck between a rock and a hard place" feels disturbing relevant. I was very grumpy and sad yesterday. I think because it's sometimes hard to equate all this with me now and who I am. I don't feel like a cancer patient. I forget I'm a cancer patient. But yesterday it was all very real. Very true. Very slap in the face you're an incredibly ill young lady stop forgetting you silly cow. The choice is take chemotherapy drugs forever or risk my life coming off them. JOY OF JOYS. I get all the fun. Partyparty.

I'm perking up quite a bit now though. It was just weird because yesterday I got exactly what I wanted and what I knew would happen. They said they'd err on the side of caution but if I wanted to stop taking them that they'd be fully supportive. And yet I felt like crap. I think five and a half years down the line I'm just a little weary of my no man's land. That's what I need to end. The not knowing. Right now this could all be for nothing. I could have no cancer inside my body at all. At the same time I could still have some and have to live with this forever. Either of those options of fine, I just want to know which one it bloody is.

And that's that. Sometime in the next few weeks I'll halve my dose and try to not die. Keep your fingers crossed and your daughters locked up and your tyres pumped full of air.

In oher news I've been colossally messed around by my GP surgery and pharmacy over the past couple of weeks too. Due to a series of cock ups on their behalf they left me without one of my medications and it made me very poorly indeed. They couldn't give me any HRT and I started going mental, proper hardcore mood swings and irrational behaviour, plus I started bleeding heavily and nearly had to go to hospital on Christmas eve. You can imagine I got rather grumpy at them for that. It was amazing though how dependent I am on drugs to be able to function normally. Sure, the HRT probably isn't the best example as when you take it your body becomes completely dependent on it so when you go cold turkey the effects are super extreme but still. Druggiiizzzz.

I had a somewhat bizarre Christmas but it's over now and that's all that matters. I am really looking forward to 2015 though, the up begins now. Be running up that road, be running up that hill, be running up that cancer. 2015 will be the year I get my shit together. I am going to poo in the face of cancer, move into a lovely new house with my lovely boyfriend, continue to look at all the amazing sexy stamps and just generally have an even bigger wilder party than ever before. No resolutions for me because everything's already pretty perfect. Just get a draining board that actually drains into the sink and stop having cancer and I'll be as happy as Larry. Come on teammm.

But now, I am off. For I have bought a very dodgy forty quid tablet from China and I wish to fill it with all sorts of weird goth music and TED lectures. My commute to work shall soon be full of sexy sexy science :)

Night night,
The Constanzinator xXxXx

P.s Sorry for being a moaner. Leukaemia's a tad annoying sometimes.