Yes, unless you've been living under a rock, you've probably heard from me/my dad (who has been telling anyone who will listen)/my boyfriend/The Void/your cat, that the PET scan I had last week came back clear - that is, it was only as glowy as the PET scan of a totally healthy person might be. As far as my doctors are concerned, I am in 'complete metabolic remission'.
*confetti cannons* (and for once I'm not even being ironic)
Honestly, I've spent the past couple of days feeling really... strange (in a nice way). The news is still fresh enough that I keep wondering if I'm dreaming, and often I'll remember with a lovely sort of jerk and end up smiling at thin air. I imagine this is how people who are newly engaged behave.
Unfortunately, I don't get to skip off into the sunset just yet. My treatment has been so consistently unsuccessful until now that my doctors don't trust my body to stay de-tumoured for long without more intervention. Think of lymphoma like a fault in the immune system - we all make hundreds of wonky cells every day (especially blood cells like lymphocytes because blood regenerates so damn quickly) but a healthy immune system weeds them out before they develop into actual lymphoma. My immune system is extraordinarily bad at this - even worse than the majority of lymphoma sufferers - and that's why the cancer hung on so long even with all the nasty drugs we were throwing at it. I need a new immune system.
I need a new immune system like this otter needs pizza. Very desperately.
The only way to get a new immune system is to have a stem cell transplant from a donor with the same tissue type as you, and luckily I have two sisters who, miraculously, both match. I'm due to borrow some of my little sister Beth the Absolute Superhero's stem cells, and grow my own brand new immune system from those. Hopefully, once I've absorbed their Superhero Power, I will manage to remain de-tumoured for longer than twelve-and-a-half seconds (I mean, we're aiming for forever here). It's a pretty solid plan.
On the flip side, stem cell transplants require a upwards of a month hermetically sealed on a transplant ward, have to be preceded by a week of HARDCORE chemotherapy, and leave you about as good at fighting diseases as a small tiny baby. It can take months to get back to normal-human energy levels, and they can cause a load of issues which essentially boil down to the new immune system totally freaking out in its new environment and having a moderately destructive tantrum about it all. But we're trying very hard to not think about that. What we're trying to think about is getting better.
The most notable change from the last couple of days is my newly rediscovered ability to think about the future without being violently assaulted by an assortment of thoughts of varying degrees of morbidity. I am no longer being forced to confront the spectre of my own mortality with such frightening immediacy. This bright new area of thinking has been accompanied by sensations of real proper happiness. I think I'd forgotten what it felt like. It is really beautiful.
Artist's impression of me (source: Scholastic)
This sudden change in my mood has got me thinking. My current emotional state is comparable to the state I was in during my six months of ABVD - that is, my first set of treatment. I had been given a fairly favourable prognosis by my consultant (I am seriously considering going back and giving him a piece of my mind re. describing Hodgkin's lymphoma as a 'cuddly cancer') and I was pretty confident that the end of chemo would yield a clear scan and a speedy return to the life I'd paused. The most important thing to notice about this situation was that I had hope, and I was in the grip of an almost fanatical commitment to ~positivity~. That faith in the future is what fuelled that positivity.
In the following months, after repeatedly failing to reach that elusive remission, the hope I had for the future gradually dwindled. How can you keep looking to a future you're not even certain is going to exist? The more unsuccessful treatment I had, the less I allowed myself to believe it was working at all. The stakes were too high. Hope would only make it hurt more when it failed.
Pretty much how it feels when the doctor tells you your treatment
hasn't worked... again. (source: @pottermemory on Twitter)
This clear scan is like someone removing a wall that was preventing me from exploring the avenues that might give me hope. The light is back on, and even though the stem cell transplant is likely to be a fairly crap experience (not least because I'm probably going to be on the ward for Christmas), it is the last stop, the bookend to this catalogue of misery. The future is within reach.
Lately I've been considering a pretty poisonous bit of discourse surrounding cancer patients - the idea that positivity is a sign of strength, or generosity of spirit, or something. That people who survive this with a smile are somehow more morally admirable than those who go through it with the grace of a newborn giraffe. It's never explicitly stated, but its implied in the way we talk about patients and experiences. I think a lot of time, people fail to recognise how much harder that positivity is to muster when your situation consistently fails to improve. Maybe that person isn't smiling because they have bloody well been through enough. It's too often implied that people just aren't trying hard enough.
I also feel this emphasis on positivity is mostly designed for the benefit of everyone else. They don't have to feel too bad for you if you're smiling through every chemo session - even if that smile never reaches your eyes. I actually think there is a lot more to be said for being honest and authentic about how you really feel. Sure it may be painful, but if you're having to confront the reality of your own impending death, then your friends can get a grip confront the reality that maybe you don't need to 'keep smiling' - maybe you just need them to stop pretending everything will be okay when you know it damn well won't.
A couple of weeks ago, I posted a fairly angsty post on my tumblr that condensed to something like 'My mum keeps emphasising how much we all need to support Beth through her career struggles, why is she not also asking everyone to support me through my potentially life-defining PET scan???//?//??//' It was definitely over-emotional and massively self-pitying, and posts like that are the reason I only share my tumblr with a select few real-life friends. You don't all need to see me spill my emotional baggage every other day. But I got a message in reply from a follower which basically said that 'a lot of people find cancer a scary topic, and maybe that's why nobody's talking about it with you'. That message actually made me really angry. You know what's scarier than talking about cancer? Having cancer. If you're scared to discuss it then you'd better hurry up and get over it because someone probably needs you.
Abi xx
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