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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

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.

describing dying-google search

"I think being dead will feel just like it did before being born :-). In that sense, we should all know exactly what its like to be dead."

"I had a dream about death once. I was shoot by a women who came out of a helicopter. Before I was shoot I was paralyzed than I felt a relief. It was a really good felling, a felling of a Freedom."

"Her joints are stiff. She is cold and hard."

"Sorry, never been there but as soon as I die I'll let you know what it was like."

"Ask me again in about 70 million years."

"Some say it's like taking off a tight shoe."

The Ship of Death

Now it is autumn and the failing fruit
and the long journey towards oblivion.

The apples falling like great drops of dew
to bruise themselves and exit from themselves.

and it is time to go, to bid farewell
to one's own self, and find an exit
from the fallen self.

Have you built your ship of death, O have you?
O build your ship of death, for you will need it.

The grim frost is at hand, when the apples will fall
thick, almost thundrous, on the hardened earth.

And death is on the air like a smell of ashes!
Ah! can't you smell it?

And in the bruised body, the frightened soul
finds itself shrinking, wincing from the cold
that blows upon it through the orifices.

And can a man his own quietus make
with a bare bodkin?

With daggers, bodkins,bullets,man can make
a bruise or break for exit for his life;
but is that a quietus, O tell me, is it quietus?

Surely not so! for how could murder, even self-murder
ever a quietus make?

O let us talk of quiet that we know,
that we can know, the deep and lovely quiet
of a strong heart at peace!

How can we this, our own quietus make?

Build then the ship of death, for you must take
the longest journey , to oblivion.

And die the death, the long and painful death
that lies between the old self and the new.

Already our bodies are fallen, bruised, badly bruised,
already our souls are oozing through the exit
of the cruel bruise.

Already the dark and endless ocean of the end
is washing in through the breachers of our wounds,
already the flood is upon us.

Oh build your ship of death, your little ark
and furnish it with food, with little cakes and wine
for the dark flight down oblivion.

Piecemeal the body dies, and the timid soul
has her footing washed away, as the dark flood rises.

We are dying, we are dying, we are all of us dying
and nothing will stay the death-flood rising within us
and soon it will rise on the world, on the outside world.

We are dying, we are dying, piecemeal our bodies are dying
and our strength leave us,
and our souls cower naked in the dark rain over the flood,
cowering in the last branches of the tree of our life.

We are dying, we are dying, so all we can do
is now to be willing to die, and to build the ship
of death to carry the soul on the longest journey.

A little ship, with oars and food
and little dishes, and all accouterments
fitting and ready for the departing soul.

Now launch the small ship, now as the body dies
and life departs, launch out, the fragile soul
in the fragile ship of courage, the ark of faith
with its store of food and little cooking pans
and change of clothes,
upon the flood's back waste
upon the waters of the end
upon the sea of death, where still we sail
darkly, for we cannot steer, and have no port.

there is no port, there is nowhere to go
only the deepening blackness darkening still
blacker upon the soundless, ungurgling flood
darkness at one with darkness, up and down
and sideways utterly dark, so there is no direction anymore
She is not seen, for there is nothing to see her by.
She is gone! gone! and yet
somewhere she is there.
Nowhere!

And everything is gone, the body is gone
completely under, gone, entirely gone.
the upper darkness is heavy as the lower,
between them the little ship
is gone.

It is the end, it is oblivion.

And yet out of eternity a thread
separates itself on the blackness,
a horizontal thread
that fumes a little with pallor upon the dark.

Is it illusion? or does the pallor fume
A little higher?
Ah wait, wait, for there's the dawn,
the cruel dawn of coming back to life
out of oblivion

Wait, wait, the little ship
drifting, beneath the deathly ashy gray
of a flood-dawn.

Wait, wait! even so, a flush of yellow
and strangely, O chilled wan soul, a flush of rose.

A flush of rose, and the whole thing starts again.

The flood subsides, and the body, like a worn sea-shell
emerges strange and lovely.
And the little ship wings home, faltering and lapsing
on the pink flood,
and the frail soul steps out, into her house again
filling the heart with peace.

Swings the heart renewed with peace
even of oblivion

Oh build your ship of death, oh build it!
for you will need it.
For the voyage of oblivion awaits you.

DH Lawrence

This may be helpful

Donating a Body For Medical Research

According to the Royal College of Surgeons, a shortage of bodies donated to medical science is threatening the teaching of anatomy, which it believes is vital for tomorrow's doctors and surgeons. The college is predicting a cadavar (dead body) shortage of nearly 30 per cent this year and estimates that UK medical schools need at least 1,000 bodies each year. The fall in donations is due in part to the Human Tissue Act 2004, which has stopped the executor of an estate saying that it was the known wish of the deceased to donate their body. People must now leave specific consent with their signature witnessed.

A body can be kept for up to three years and the regulation of donated bodies is rigorous, with a strict code of conduct in the dissection room, which includes only exposing the specific body part being examined. There is even an annual thanksgiving service held at Southwark Cathedral, attended by about 800 people, including family and friends of donors as well as medical students. At the end of the period, the body will usually be cremated or buried at a special memorial service.

How to Donate Your Body

- Fill out a consent form which can be obtained from your local medical school. Your signature should be witnessed and the document kept with your will and a copy lodged with the medical school.

- Two donation options are available - 'non-retention' and 'retention'. Non-retention means that the medical school cannot keep any of your body parts and after three years, the body is cremated or returned to the family for burial. Retention means that the medical school can retain parts of your body for future use.

- You can donate your body at any age over 17. It makes no difference what age you are, although they are normally refused if there has been a post-mortem examination or any major organs (other than the cornea) have been removed.

Donations are now regulated by the Human Tissue Authority, which was set up to regulate the removal, storage, use and disposal of human bodies, organs and tissue for a number of Scheduled Purposes – such as research, transplantation, and education and training – set out in the Human Tissue Act 2004 (HT Act). Visit www.hta.gov.uk to find further information and details of your local medical school or ring 020 7211 3400 or email enquiries@hta.gov.uk