Wednesday, 12 August 2015

Anybody got a functioning immune system going spare?

Well guys, it's been a bit of a week, and it's only Wednesday.

There have been quite a few people wanting to know what's been going on with me lately, and I have been horribly vague with a lot of them because explaining stuff is hard and complicated and there are lots of feelings involved. You'd probably regret asking once I started crying into your shirt. But there are definitely some people to whom I owe an explanation, and this is the easiest way to do it.

When I was first diagnosed with Hodgkin's lymphoma almost a year ago, everyone told me it was the best cancer to have. My consultant at the time actually referred to it as a 'cuddly cancer' (kind of want to give him a good slap for that) and I was reassured that about 90% of patients my age are dead easy to treat and basically cure.

You never think you're going to be the other 10% until you're sitting in your doctor's office sobbing into your hands because the damn thing just won't go away. To start with it's fairly easy to reason with yourself and talk yourself out of catastrophising every situation, but there's only so many nightmarish consultations one person can sit through before the entire world starts to look pretty bleak.

Last week I had a PET scan (the one that detects active cancer cells) following up my chemotherapy. At my appointment on Monday, I was expecting decent news. I wasn't displaying any symptoms of Hodgkin's any more, I was feeling pretty bouncy, all the medical professionals I had spoken to throughout my treatment had seemed confident that the chemo was working. The last thing I expected was to hear was that my PET scan was only improved very slightly compared to May, and that there were actually new areas on the scan that had somehow grown despite the chemo, the sneaky bastards. It feels like I'm back where I started.

Apparently all is not lost, even though it does kind of feel like everything is pointless and I want to punch lots of things. I'm going to start treatment with Brentuximab Vedotin (isn't that a character from Game of Thrones?), which is a monoclonal antibody drug. In layman's terms, it goes after one specific protein found in Hodgkin's while leaving everything else unscathed. While I am hesitant to let myself be hopeful about it because of everything that's happened so far, it is supposed to be the bees knees. One definite upside is that it's much easier to tolerate than chemotherapy, and because I have four cycles planned, each lasting three weeks, that means I get three months of hopefully feeling relatively un-horrible.

Assuming that does what it's supposed to do and I get a clear PET scan (touch wood lol), it's now being recommended that I have a donor stem cell transplant. The original plan was to use my own stem cells, but considering my frankly shocking response to previous treatments, it seems a lot more sensible to give me an entirely different immune system that might do a better job in the future. Very bizarrely, both of my sisters are matches for my stem cells (the chance of that happening is only about one in sixteen) so I'm hopefully going to nick off with one of their immune systems and everything should finally be good and happy.

(except that donor transplants carry a whole host of rejection risks and potentially horrible side-effects but shhhhhh we're trying very, very hard not to think about that now)

I seem to tempt fate when I say 'things could be worse' - every time I've said it, things just go ahead and get worse. I'm beginning to think the universe has it in for me, or at least my own body definitely does. Guys, please don't ever take your health for granted. I would not wish this situation on anybody.

So yeah, things are looking pretty crap but not the absolute crappest they could possibly be. Be prepared for me turning up at your uni residences throughout the autumn (or Michaelmas if you're a one of the idiots who picked Durham) term/semester/samosa/whatever so I can pretend to be a proper student while I'm feeling vaguely acceptable. I'll sleep on your floor or something.

Peace and love, Abi xxx

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