Oh my goodness, how long has it been since I properly wrote anything here? Those of you who are distant strangers may well have feared that I was no longer around. I am! I am still very much around and in remarkably good shape.
I’m one of the lucky ones. Yes, my auto transplant failed very quickly, but since my allo transplant, I’ve had really very few issues. I’ve had very few infections or hospital admissions and certainly nothing too serious. I’ve had some Graft versus Host Disease [GvHD], but it has been only mild to moderate. (Makes it sound like the shipping bulletin.) Nothing life-threatening. And these days it’s all stable and very mild.
I’ve been discharged from Respiratory clinic, now that I’ve passed the milestone of the first two years post-transplant – the peak risk period for lung GvHD. My lungs, while not recovering any function, have not lost any either. In fact they have remained stable since I started treatment. I was sad to say goodbye to the lovely Dr Fogarty.
I still have regular ECP [extracorporeal photopheresis] treatment to keep stable or maybe even further improve the minimal GvHD (lung, scleroderma, mouth, vagina) I have now. The ECP treatments are now only every eight weeks and may well decrease in frequency after my next GvHD clinic appointment. I still attend Transplant clinic, but that is also around 8-12 weekly. It’s all a lot less prominent in my diary and in my life, thus the vagueness.
With my discharge from Respiratory monitoring, I was also able to stop taking Azithromycin and a Becotide (steroid) inhaler. I still take a good old handful of tablets – Aciclovir, Penicillin, Imatinib, Omeprazole and Prednisolone, but this latter is now down to only 4mg a day and I’m on track to reduce it by 1mg each month. So hopefully by November, I won’t be taking any steroids. I also take a supplement of Glucosamine Sulphate and Chondroitin; I went through a period of leg, hand and foot cramps and joint pains, which have fortunately stopped since taking the supplement. I’m hoping to stop taking them soon too.
Strangely, as my clinical needs diminish, attending appointments has changed from being a regular and quite enjoyable part of my weekly/monthly routine to more of an inconvenience or chore, something that gets in the way of the other things I was doing, whereas previously, they WERE the things I was doing. I never thought I’d get to feel like that and I’m not sure I like it. It’s the normalising of my life, which many people would hugely welcome, that I actually find tricky to manage psychologically. I had a role as a patient; I’m not really sure of my purpose now.
Don’t get me wrong… As those of you who know me in real life, or on Facebook, will be aware, I do a lot – volunteering, Playback Theatre, networking, painting and other creative arts, training and workshops, knitting, socialising, travelling. People frequently advise me to slow down and take it easy. But that’s not me, that’s not what I’m drawn to do. I still want to make an impact on the world; make a difference; be creative; see, do and be as much as I can; make the most of my life.
Finding a balance between those desires and the need to relax, rest and ground myself has always been difficult for me. Maybe that’s why ‘returning to normal’ feels so hard, because now I also return to my ‘normal’ (pre-cancer) way of being in the world and have to manage myself in a way that I haven’t needed to do while I was really ill or recovering from treatment. For most of the past four years, I have managed – I know not how – to find a very zen-like state of acceptance without really trying. An acceptance not just of having cancer and facing death, but also of myself, my purpose, the meaning (or lack thereof) of life and the world around me. For most of that time, I was relatively free of anxiety.
I am certain that will sound very bizarre to anyone who has not been in this situation, and maybe for some who have been in a similar place but have reacted differently to me, it may be hard to comprehend. But there you have it! That’s my truth.
And now… In so many ways, I’m ‘back to normal’…
And yet, it’s not quite the same. I can forget to some degree and much of the time what I’ve been through and that the myeloma will likely return. It is still deemed incurable after all. And I don’t spend much mental energy thinking about it, but it is still there. An ever-present fine haze over my life.
But it’s when I do forget that I get caught up again in the day-to-day anxieties of ‘normal’ life; I lose a sense of meaning and purpose in my life. So the haze is really not a bad thing; in fact I appreciate its presence. I appreciate being able to hold on to that potential relapse as a reminder to keep making my life count, to make it mine, to make it worthwhile, to make it something I can look back on and be pleased with how I spent my time, to be able to die knowing I have no regrets.
Phoebe Snow, singing a beautiful version of the Billie Holliday song, ‘No Regrets’. Phoebe Snow died in April 2011, not long after my diagnosis. I hope she died with no regrets either.