It’s been a bit of an eye-opener to see that at least some friends and family genuinely believed my post on Facebook declaring that I had completed my first triathlon. I chose a snappy, attention-grabbing description in the expectation that nobody would actually believe it, but instead would be intrigued as to what I was talking about and click through to my blog post, watch the video and eventually sponsor my friend Anna on her fundraising page (there’s still time to sponsor her!)…
Of course, I know – and probably you know, if you’ve been reading my blog much – that there’s no way I would be able to take part in, let alone complete, a triathlon 64 days after my stem cell transplant. A walk up to the Rookery on Streatham Common and back again is pretty much my limit at the moment. But, reluctantly, I have to face the fact that not every single person I know i) reads my blog, ii) reads every post, iii) takes in every detail, iv) understands every medical nuance, v) remembers everything and vi) keeps track of my progress as closely as I do.
In fact, that probably rules out everyone. To me, it’s obvious I couldn’t do a real triathlon, not only because I’m living the patient experience and am surrounded by medical information and guidance, but also just because, erm, I know my body couldn’t do it. It’s totally justifiable, however, for someone else to think I might be able to, particularly given the positive news about my treatment and recovery on which I tend to focus.
It’s equally understandable that some friends and family may have considered the transplant to be in some way the end of my story: success, closure, a ‘cure’ for my leukaemia. While the transplant has certainly given me a better chance of avoiding relapse, though, unfortunately it’s not a golden bullet. In addition, I may not always show it (particularly when undertaking triathlons in the bath), but I’m still in a very vulnerable state and am unlikely to be back to a ‘normal’ life for at least a good few months yet.
It’s impossible, of course, for anyone to judge at any given moment how I’m feeling. After all, I find it tough enough myself… General advice is that I should listen to my body and rest when I need to rest, while making the most of the energetic times to build up my strength. It’s never as easy as that, though – life, of course, gets in the way. For example, after Mariacristina’s come back from work after a long day, put a wash on and hung it up, baked a cake and cooked supper, I could never tell her: “Actually, I’m feeling exhausted and need to go to bed; can you empty the dishwasher?” Of course, she’s so magnificent that I’m sure she would do it if I asked – but with everything she already does, it would take a cold heart not to push myself to help when and where I can. Or, at the very least, promise to do it tomorrow.
Funnily enough, I tend not to take pictures of myself looking weary or write about days when I’ve done nothing at all because it’s all seemed too much for me. But they do happen, and I still can’t help but feel guilty when they do – there’s lots I could be helping with around the house, as well as ‘life admin’ – and trying to use my experience to support fundraising/awareness and help others. Seeing is believing, though, so it’ll probably be harder to convince people I’ve still got a lot of recovery to get through, and suffer from fatigue, when they see my videos, and even my rapidly growing hair.
Of course it’s good if people see me looking healthy and generally feeling good (which is the case, incidentally). But I, as much as anyone, need to remember that my body’s had an almighty change made to it, and needs time and rest to recover properly. I have felt pretty weary recently; perhaps because I’ve been trying to do too much, or just because my body’s still having to work hard to get used to this new bone marrow, or perhaps as a side-effect of the graft-vs-host disease (GvHD) that seems to be manifesting as a rash on my arms and hands.
Yep – it looks as though I do have some mild GvHD, which is good in terms of bringing with it the possibility of graft-vs-leukaemia (GvL), but needs to be closely managed so it doesn’t get nastier. My ciclosporin level is therefore back up again, I’m putting on steroid cream and I’m now going back to hospital twice a week so the doctor can keep an eye on it. This isn’t unexpected, and in a way I’d be a bit more worried to have no GvHD at all.
Life, though, is most definitely good – Day +72 and counting (though sometimes losing track)!