Last year at this time I was in the middle of radiotherapy and snow was imminent, familiar themes in December 2010. The main difference was that then I was preparing for the bone marrow transplant and we were all full of hope. In my letter to my donor I thanked her not only for giving me her bone marrow cells but also for giving us all those extra months of hope.
In February after lots of planning I went into hospital for five weeks. Nothing can prepare you for the isolation and the perpetual transfusions of drugs, platelets, blood etc. The long sleepless nights were difficult and the uncertainty of the outcome cannot be underestimated. However, on the plus side the staff understood our problems only too well, the chaplain visited me regularly to chat and to give me communion so I didn’t feel so cut off and my family were a constant comfort. If they couldn’t visit, they telephoned or left messages so although I was in isolation, I was connected to those I love.
Coming home was wonderful, but my family had to work hard to prepare the house so it met all the clinical standards and it worried Ray when I had stomach upsets and couldn’t eat. I was unable to sleep very much but I had all sorts of practical help from friends and very gradually I began to feel better. Then there was the onset of Graft Versus Host Disease, welcome in one way because the medical staff hoped it would resist the lymphoma, but causing enormous discomfort. For weeks I resisted going back on to the immuno-suppressant drugs but in the end I had to accept the fact I couldn’t go on.
The most difficult period was waiting after the scan to see if the enlarged nodes were the result of the GVHD or mantle cell lymphoma. The news that the lymphoma had returned despite the transplant was devastating. However, life goes on and we have to make the most of what remains for me. Although it is never far from my mind, life is going on all around me, people are doing interesting things and there is a lot to laugh about.
Perhaps because so much time has revolved around medical procedures, I have specially enjoyed my trips to London, Wales and France. I treasure the weekends when the family visit and time spent with Raymond whatever mundane tasks we may be doing. The journey I have embarked on now is different from the one I expected and there is no road map. The medical staff are doing all they can to prolong my life and I am most fortunate that I can trust their best intentions for me.
Tomorrow is the start of the New Year and is full of promise for so many people. For some of us it is different. I find myself going over so many memories in my mind. The turn of the year is a time of remembrance, nostalgia and for people like me – a little melancholy, something I felt yesterday on our journey to the Marsden. And then I think of John Keats knowing he was going to die of TB at 26 yet composing the poem To Autumn – melancholic but acknowledging the beauty not just of the season, but of that time in his life. May the coming year be special for us all.
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