Adrian Sudbury
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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.
To petition about bone-marrow donation: petitions.pm.gov.uk/bone-marrow
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Bless you. I just found out that I have cancer and when they found it they said that I could cease to exist at any time. I understand how you feel and I like how you are dealing with it. If only there were more people like you, we would have a better world. Thank you for sharing this.
Rick Banks, Huber Heights, USA
You inspire me! Thank you for sharing.
Sean, Big Sur, CA, USA
Your courage, strength and lack of fear is insiprational.
Harpal, London, UK
Wow Adrian, what an inspiring article. My toddler has incurable heart disease that will require a transplant and she'll probably have quite a short life. I worry how she will come to terms with her condtion when she is old enough to understand but your story makes that seem possible. Thank you.
Maria, London, UK
What amazing courage.
Steven, Otley, West Yorkshire
How true is it that we all live in a dream and rarely live out of that state. To face the truth must be absolutely terrifying but what an exceptional man you are to face it with such courage and steeliness. I hope you have many fantastic days and live them all to the full. My best wishes to you.
Steve, Otley,
It seems to me you have lived more and understood more in the past few months, of what being human and the love of others is all about, than many of us who reach old age will ever do.
michael, taunton, England
You are incredible! I am sure if anyone can confound the doctors expectations it is you. Even while you are ill yourself you are thinking of others. Please keep enjoying your life and may there be much of it to come.
Patricia, London,
I am in remission from breast cancer and have followed Adrian's story; I find people like him truly inspire me, but am truly sad he will not have a happy outcome. No cancer patient can be certain of the future, but for some of us there is hope.
Linda, Fife,
Adrian, you are a brave and courageous man. I am involved in treating cancer patients and quote experiences of people like you and others to sustain and inspire my patients. Reading your article is very salutory and inspiring. Keep writing and stay strong.
Krish Kumar, Plymouth, UK
Best wishes to you .
yunxia , beijing, China
Adrian,you are the bravest person i have ever seen. Your words are so touching to me. I hope you can keep on enjoying your life.
Wilson, GuangZhou, China
What a sad waste to the human race your death will be. I am already a blood donor but will now try to get on a bone-marrow registry in tribute to you.
Lisa, Sydney, Australia
Adrian, your words are of the most inspiring. I have taken note of your words, "Even though I'm getting more and more tired, life is fabulous.".. "I'm conscious that there isn't a tomorrow is a liberating experience that only a few people have". I was diagnosed with breast cancer.
D cAMPBELL, london,
Adrian, you are a brilliant journalist. Please carry on writing and inspiring the rest of us.
I wish you all the best!
Paulina (27), Poznan, Poland
I applaude your courage in deciding that enough is enough and knowing when it is time to stop fighting. I am a firm believer in quality of life over quantity. I am a registerd blood/bone marrow and organ doner and possibly one day I will be called on to help someone like yourself.
Emma, Canberra, Australia
I think the talks are an amazing idea. I have donated blood since I was 17 and I am now on the bone marrow register. I think if there is no medical reason for you not donating then everyone should.
So many people don't due to their misconceptions regarding the process. Stay strong, great legacy!
Dee, macclesfield, cheshire
I have been on the Anthony Nolan register for several years but have never been called on to help yet. I wanted to sign your petion as it would increase awareness, but it closed on 23rd July. Which is a shame as I am sure many would sign after reading such an inspiring article. Best wishes to you.
Eleane Rhodes, Leicester, UK
Please don't give up!
Kelly , Aberdeen,
Depending on the type of leukemia it may be improved by simulating a hunter-gatherer diet, which roughly speaking means low-carbing (though perhaps not as strict as Atkins).
But don't quote me.
Greg Lorriman, Leatherheard, UK
How brave you are Adrian and what a fantastic idea for the talks to the 17 and 18 year olds. My son wouldn't be alive today if it hadn't been for a bone marrow donor that we will be forever grateful to. My thoughts and wishes are with you.
Carole, Orpington, UK