At 27, I'm dying, but I feel content
A journalist is facing an early death because of leukaemia, but a brave campaign to raise awareness about bone-marrow donation can become his legacy
How can I describe what it's like to be told, at the age of 26, that I'm going to die soon? People tell me it's something they can't imagine at my age. It happens, we know, but it's not what anyone expects.
A couple of years ago I was happy, fit, in a job I liked, looking ahead to the future. I wanted children and I certainly didn't think about my own death. Now here I am with my time running out. How long have I got? I don't know, but a few months ago I was told it could be months or weeks. I won't have kids, I won't have the career. I haven't got much life left. But the strange thing is that right now I'm having a good time.
Yes, there are sad moments, but there's a lot of laughter too. My time is short, so it's valuable - I don't waste it, I use the sense of urgency I've been given to live as fully as I can and, I hope, to provide a legacy that will endure after I've gone.
All this began in the autumn of 2006. I'd had mild chest infections that I couldn't shake off, but the main symptom was extreme fatigue. I'd wash the pots and have to have a lie down halfway through. The second time I saw the GP and he said it was a virus. “Take it easy, try a nice drink of warm honey and lemon.” I realised that wasn’t going to help and the next day I went to hospital. In November I was told that I had leukaemia.
I was 25, fit and healthy, and you go from that to facing six months in hospital. I was cutting my teeth as a journalist at the Huddersfield Examiner and my plan was to move to London to get into national journalism. I had a girlfriend of six years, Poppy, and we had a flat in Sheffield. I was playing football, doing boxing training, not smoking, not drinking excessively. I've always been optimistic and I was confident that I'd make a full recovery.
I had acute myeloid leukaemia and a strange chronic form of the disease that the doctors hadn't seen before. This meant they couldn't give me a prognosis, but they offered a standard course of chemotherapy. Each chemo cycle lasts five days or longer, but you're in hospital for about five weeks because the treatment is pushing back your bone marrow - the source of much of your immune system. Until that bone marrow regenerates and the cancer is removed (as you hope it will) you're on the ward. That means you're either incredibly ill or incredibly bored.
It's unpleasant and it began to come home to me that even if I survive all this a lot of my life is going to be missing. I had two cycles of chemo and although the acute myeloid leukaemia was improving, the chronic type was getting worse. The only option was a bone-marrow transplant. By then I'd started a blog. I wanted to have something to show for the months of work that I'd missed and to dispel the myths about bone-marrow transplants. With the help of colleagues, I kept a video diary. We found a match, a woman from Germany. Transfusion takes half an hour, but then you have five weeks in isolation, which I found very difficult psychologically. You're allowed only three visitors, for me my parents and girlfriend, but that's it. You feel really unwell because you're being hammered with intense drugs.
In September I got the double all-clear. I remember the phonecall from the hospital and this huge weight coming off my shoulders. I was so relieved that I didn't have to think about death and treatment and complications. I could count down to going back to work, to a normal life.
The next complication was graft versus host disease, which meant my skin was dry, itchy and sore. Your new bone-marrow cells are grafting into the old bone-marrow space and they're now attacking your own body. The treatment for that is high-dose steroids, which cure the symptoms but they bloat you and carry risks. The steroids stopped me getting back into my exercise routine, though, until early this year, I'd managed to return to my job by working from home. I was still hopeful I'd get back to this routine, but difficulties were piling up. One of the side-effects of a bone-marrow transplant is that it makes you infertile. The knowledge that having a family would be difficult has been the hardest thing to accept - harder than the thought of dying.
At Christmas I proposed to Poppy and she accepted, but in April she decided that she didn't want to get married and my world imploded. I'd pinned all my hopes on being with her. There's no blame, Poppy did the right thing, but it left me feeling worthless and lost and I did think about killing myself. I was struggling to think who would want to marry someone in this situation, someone who can't have children. I can't change any of these things, there's no medical treatment that can offer me a cure, I'll just be stuck in this flat in Sheffield with no hope. I wasn't cured, but I wasn't dying either. I felt as though I was in limbo. This was one of the times when the blog was incredibly cathartic because of the support I got from so many people.
What I wanted was a cure that would give me 95 per cent or 100 per cent of what I had before, or the outcome I have now, which was, bizarrely, better for me in a way.
About two months ago I was told about a major relapse that couldn't be controlled. That was when I decided not to have any more treatment: though that makes me sound brave, I don't see it like that. The chronic leukaemia has survived two cycles of chemotherapy and radiotherapy. It has resisted a new immune system and a drug called Glivec. I could have had more chemotherapy, but it was unlikely to help. I decided to stop the Glivec treatment and go back on the steroids: they give you a quality of life and you can enjoy what time is left.
It was a strange period because knowing I'm going to die soon became real, not just something that's going to happen at some point. Part of me was sad and taken aback, though I wasn't emotional. I called my parents in and we had a chat and I went outside for an hour to gather my thoughts. I sent texts to friends and family. I went back in to my parents and that was it. Total acceptance and relief because this was the way out for which I'd been hoping. Despite being unable to have kids, I want to leave a legacy. I can do something about trying to get more people on the bone-marrow registry. There is a huge demand for donation in the UK. My transplant didn't work out, but I've had an extra 18 months of life because of the altruism of a stranger. I'll always be touched by that and it's motivated me to campaign to get compulsory 50-minute talks into sixth-form colleges about why it's important to donate bone marrow, blood and organs. If people knew how easy it is then perhaps the 16,000 people in the world waiting for a bone-marrow match wouldn't have to die.
I got in touch with Kali Mountford, MP for Colne Valley, and a few days later I was in London and had 20 minutes with Gordon Brown. The idea is gathering momentum and I hope the talks will become a permanent fixture for 17 and 18-year-olds.
These few weeks have been a peculiarly pleasant experience; difficult certainly, but if you to ask my family if we're unhappy the answer would be a resounding no. I'm staying at my parents' home in Nottinghamshire now and it's open house, people come every day and we have good food and drink. Thank God for the steroids.
Even though I'm getting more and more tired, life is fabulous. One of the most beautiful things about this situation is that people are so honest in a way I haven't experienced before. People just go straight to what they want to say. I'm conscious that knowing there isn't a tomorrow is a liberating experience that only a few people have.
I don't think I have anything to be scared of. After death there's either something fantastic or there's nothing, and that's fine. I'm a bit tired. I'm looking forward to a rest.
No comments:
Post a Comment