Autumn, the leaves are falling. The intense heat of the summer has faded, the rain has come at last, and the landscape is green once more. The trees are providing a backdrop of yellow, orange, brown, and green. The earth is damp, and puddles are beginning to form where I walk regularly. I’m enjoying my walks now without the fear of overheating, enjoying the earthy smells and the cool fresh air against my face.
Six months ago I walked into St James’s hospital in Leeds, unsure of what state I would be in when I left, and indeed whether I would walk out of there. I stayed for just five weeks before shuffling out of the door more slowly and weaker than when I went in. The immense compassion of the staff helped me survive some difficult challenges. My wife and family kept me going through the stay and the following weeks. But I made it past the first and most challenging hurdle.
Now I can walk over five miles without being wiped out, I have started regularly attending yoga classes again, and we’ve managed a couple of tea dances. I feel fitter than I have for about two years, though it is just over a year ago that my symptoms became clear. My blood counts are nearing normal. I just take prophylactic antibiotics and antivirals now. People tell me I look well, and not just those who are gee-ing me up.
Six months is another watershed. I have been off strong drugs for some months now, and the side effects of them are gone. There was a slight chimerism on my last blood test in August, but the haematology team advise that is to be expected. I have a lot of iron in my body from the large number of transfusions I had before the transplant, and I need to reduce that: I’ve had two venesections already where they take blood out, with no detrimental effect.
I haven’t added to this blog for a couple of months, mainly because there has been nothing significant to report, but also I feel like I am beginning to get on with life. We’re still cautious about crowds, and if family are infected they keep away, but other than that we are socialising and enjoying life. We have been to some social dances which are not particularly crowded, and where no-one knows us. In the new year, we hope to be able to start dancing locally, and reconnecting with people there.
Now I can have my inoculations. The other day I had flu and COVID vaccinations, and this morning I got the schedule of vaccinations I need to uplift my immune system, including all the childhood vaccinations. It will take another six months for my immune system to have recovered.
Looking back to that fateful day in April when I received my donor’s stem cells, I can now have some perspective. No-one would choose a stem cell transplant if they did not need it; in my case the survival statistics with and without an SCT were about the same but the choice was between a possible cure with a very high up front risk or a steady decline with the risk pushed down the line as I got weaker. The stay in hospital was physically and emotionally hard, and the symptoms of the drugs I was on were also challenging for the next three months. But from then on, it has been a steady improvement.
Psychologically, I have survived the trauma well. There have been very few days when I felt down. I have managed to sleep well throughout all this. Now the challenge is, what shall I do now? We are still wary about travel. I have some small items of mindfulness work. But as medical demands diminish, and I feel that I can plan beyond just a few weeks, there is space opening up. I was, to a lesser extent, facing that challenge before MDS arrived on my horizon, but some of the options then are off the agenda for a while if not for good.
A diagnosis changes you, changes your life. Recovery changes you too, though I am yet to fully feel that. There is the obvious gratitude for those that have made this possible. There is also the fact that I have faced the uncertainty of a serious cancer diagnosis and treatment. The world seems quite different now, though I can’t at this stage put it into words. I will try, over the coming months, to express that.
In the words of Mary Oliver’s poem, The Summer’s Day, what do I plan to do with this “one wild and precious life”?