One Saturday night last June, Nick and I lay on a rickety bed in central France with his pocket radio propped between us on the pillows. The radio had accompanied him everywhere: it had distracted him through the sleepless nights preceding the operation to amputate his leg, had comforted him in the waiting rooms of consultants in whose hands his fate seemed to lie, and had helped him to while away the weeks in hospital following the surgery. Now it was retelling a story we knew all too well, the story of what we had lived through in the months following Nick's diagnosis with cancer - as told by ourselves.
The process was cathartic, sometimes gruelling, but at times great fun. We handed the tapes - and the final production - to Simon Elmes at the BBC. Nick's chemotherapy finished and we went on holiday. We had an earpiece each and we fought over the (perpetually) entwined wires.
The signal was weak and it was a struggle to hear. At the end we quibbled over one thing I had said, shed a proud tear over our four-year-old twin boys, and then went to sleep. We never imagined there would be much reaction. Ever the professional, Nick's main concern was that broadcasting a personal story was 'inappropriate' for a BBC presenter. He also feared the material would be insufficiently interesting to sustain 45 minutes of airtime. It would not be an exaggeration to say that Nick was utterly stunned - and overwhelmed - by the response.
People wrote of having cried in their cars on the way to work. Many shared their own moving stories, which were reflected in our own. Some said they understood for the first time what it was like to face the tyranny of illness. They urged us to keep strong, thanked Nick for his courage and honesty, and often reduced him (and me) to tears.
When the number of letters reached about a thousand, Nick could no longer face reading what was essentially an outpouring of admiration and respect - the most modest of men, he found it all slightly embarrassing. His desire to reply personally to every missive, as he had done throughout his career, was stifled by the sheer size of the pile of mail that grew by his desk. He was baffled that when people met him they wanted to talk about nothing but the programme, and how brave he had been to make it.
Nick insisted that all he had done was have the misfortune to get ill, but have the luck to be able to share the experience. He was happy to feel that doing so had helped others in similar situations. But I think the programme's aftermath also made him realise, perhaps for the very first time, how widely he was respected and admired. And I like to remember the comment made by a friend - that it was, in fact, a love story. Of the love we had for each other.
Fighting to be normal
By Nick Clarke
It's Sunday 11 December, which means that there are eight days to go before I lie down and have this limb removed. I'm looking at the toes at the other end. They look fine but are part of the problem and, in order to remove the other Thing, as I call it - it's the top of my hip - the leg's got to go too, which seems a bit tough on it but there we are. It's something which I certainly can't say I've come to terms with at all. Maybe Barbara has more than I. I think of it fleetingly and as soon as any of the more graphic images associated with amputation come into my head I eradicate them.
I did take against it, and I called it the Thing or the Beast or It. And when it became known as a sarcoma I didn't really call it that. I preferred the Beast - it's a bit like that. It's inside you and it's gnawing away, trying to devour you, which it's making a good job of doing. I quite like the Beast.
I'm sitting here on my own in the house; Barbara's out with the boys, and I'm looking at the Christmas tree. The boys are going to have a very strange Christmas. They maybe can't remember or don't know yet what a real Christmas should be like but, bearing in mind that I'm going to be stuck in the Royal National Orthopaedic Hospital at Stanmore with a bit missing, it won't be quite the same.
We've tried to introduce the idea very gradually that, first of all, Daddy's got a poorly leg, which is fine: it explains why I tend to lie about the house not able to do much. And we're beginning to talk to them now about if he's got a really poorly leg, maybe the best thing to do would be to have another one. Well, why not? If you break a toy, if the wheel comes off the bloody tractor again, then their instinct immediately is to get another tractor. So, on the same mercantile basis, maybe they won't find that quite so strange until obviously they see what's involved.
I'm a worrier. I do worry all the time, and I worried that I had cancer, I worried that the test results would be bad. I was particularly worried about the operation. I didn't find anything humorous about the idea of going under a general anaesthetic for the first time in my life.
We've been married for nearly 15 years and our 15th anniversary is this summer. Barbara Want, television producer, is now holder of many other posts, keeping me on the straight and narrow, trying to act as a consultant while keeping the whole family going. It was at the beginning of November when she persuaded me finally that I should go to the doctor and report to him this very large and growing lump on my bottom, on my buttock above the left leg. And it was so large by then I was beginning to have trouble walking, so I agreed - not nearly as quickly and readily as I should have done. And then, when it started to grow, it just terrified the living daylights out of me and I was trying to hide it from Barbara, which wasn't all that bright.
I'd done the programme [The World at One], turned up at the doctor's surgery that afternoon, a Monday afternoon. You could see the doctor blanching. He'd never seen anything like it, a great swelling of the buttock and I knew the game was up. It had to be cancer. Everybody knew that. And then I was swept off to a consultant surgeon who basically told me that the only solution to this was surgery first and to remove the leg at the same time.
It's now Wednesday and there's not very long to go. It's a cancer of the soft tissue and it attacks various part of the body where there's soft tissue, like thighs and shoulders and buttocks and places like that. It's a very rare cancer. Well, you know, we don't want any common or garden cancers. It's only one per cent of the cancers in this country, and it can sit not doing much for a while and then start to be very active, which is what happened to mine, and aggressive, which is the word they use. I don't like using it.
I said to the surgeon: I know it's a very big operation, but surely it's not as bad as having a chest cavity opened and multiple bypass surgery? And he said: well, it's not that different.
48 hours to go and it's been rather a frenetic couple of days. We've got two boys, identical twins aged four in July, Benedict and Joel. In his junior years Benedict's become Bendy, which we're trying to think about ways of undoing. Kids have been quite whiny but it's hard to tell whether that's to do with the disruption to family life and their father slouching about in a slovenly manner or whether it's just three-and-a-half-year-olds being three-and-a-half.
It's Sunday morning, the children have gone off to do the church nativity play and I'm here now almost exactly 24 hours away from the removal of the Thing. I'm looking at the poor old leg which has never done anyone any real harm and not thinking wistfully about it, because I'm in such discomfort. I slept hardly at all last night, had strange dreams. The plan is for the operation to take place some time around midday Monday and it will take roughly four hours... it could be a bit more or a bit less. It's one of those occasions where you just think if only it was Wednesday now, but it isn't.
Gone
Ta-dah! It's gone. Nick's left hindquarter is no more, and I can't really believe it. Everything seems to have gone as well as anyone could have expected. I haven't actually seen the surgeon but everyone else, the anaesthetist, all the people in intensive care and all the people here in my little ward, they all seem both surprised and delighted about how well it went. And they got rid of the Thing, and my leg, and I really can't believe it.
I feel better. This does not mean that it has been a crisis- and trouble-free experience over the last 24 or 36 hours because there have been one or two really nasty moments, the nastiest of them being associated with this phantom pain left in the space where the leg was; and it happened while they were doing a bed wash and suddenly I felt as though someone had gripped the missing leg with a huge hand and was starting to yank it off, and it was crucifyingly painful.
I need to be as close to the children as possible, I don't want them to go around being worried about this. They're not at the moment, but there'll come a time, because I can't do football practice with them. I can actually play crutch-football, which is a new game I've devised, but it's not quite the same! I don't want them to regard me as that different from other dads. I just want things to be normal.
Christmas eve, 90 minutes to go to Christmas Day and I'm not feeling sorry for myself at all. I don't know why - it's probably the drugs. This rather bare little room is not very attractive but at least I've got lots of relatives and friends and family coming to visit me tomorrow; whereas Aaron, my nurse for tonight, is going to be sitting on his own in a small hospital room, with all his relations three- or four thousand miles away across the Atlantic in Trinidad; and at least I have had quite a lot of use out of my lost leg, unlike the nine-year-old girl they operated on today, who lost her leg, and this is about the most dismal Christmas you can imagine for her.
Physical independence is very important to me. I don't want to be dependent on anybody, and I want to be able to find strategies to deal with all the little problems as quickly as possible. Some I won't be able to, but most I will, I think. I'm going to have trouble feeling like a disabled person, and I was just reflecting vaguely that this wasn't really the right thing to do. I ought to accept that there are other people in wheelchairs, hopping up and down the hospital corridors and so on. We're all in the same boat.
New year, first steps
It's 2006. I woke up, as it happened, just before midnight and toasted the New Year and expectations for improvements in some areas on my own, but that's the way these things are.
It's now Saturday morning about two-and-a-half weeks after the operation and I've had a busy week. First faltering staggers on to the frame have been replaced by trips to the gym in my wheelchair and, on Friday, using a crutch with each arm alternately instead of the rail. And on Monday I'm promised two crutches and I'm told I'll be no problem.
I must admit that after nearly four weeks I'm going a bit stir crazy. I've started getting spooked by the magnolia wall in front of me, and the way the cable hangs down from the television in the shape of a diver, or sometimes it's a mouse. The fact that I've been contemplating such things makes me sure that I've been here too long. Well, the end is in sight, and hopefully I'll be out within a few days.
Tuesday morning I woke up to find my room filled with consultants again. And they brought good news: the pathology on the leg and on the material that they removed from me had shown no spread of the cancer that they could see. So I was a bit euphoric because technically speaking I suppose from that point I don't have cancer.
Home again
It's late on my first day home, and it's gone at a rather bewildering speed. It's extraordinary to be home. I don't really know whether I expected to come back again. I don't think I ever gave up hope altogether but I did feel so damned lousy. I could see the look in people's eyes when they came to see me, and they would admire my spirit and how cheerful I looked and how I was able to engage in interesting conversations; but I could see in their eyes something that said: oh my God, he looks awful. And I did. So it's weird and wonderful to be back.
I've been sitting here like someone in the lull of a storm knowing that any day the chemotherapy might begin. The way I feel at the moment I could go back to work, and now I'm going to have to put this off for three or four months to have this wretched treatment that, technically speaking, I don't need because, technically speaking, I don't have cancer at the moment.
The chemo
I've done five sessions of two days each and it's very, very depressing. It just grinds you down. It's really hard to explain. You feel as if everything has been just knocked out and you're incapable of movement. This terrible lethargy comes over you but, actually, when I stagger out of bed after not having moved for 42 hours I feel much better as soon as I put my feet on the ground, and within a few hours I feel OK - tired but OK.
On Friday at nine in the morning I left the hospital after two days of chemotherapy and by 12:30 we were on the way to the airport because I decided I couldn't face waiting at home for three days while everybody else went on an adventure to Slovakia to see our much loved ex au pair, Jaca, getting married to her French boyfriend. Just confront it.
And here we are in Slovakia. We've seen Jaca. She looks fantastic. The sun's beginning to shine. I feel fantastic being here.
I worry about Barbara all the time. I don't think I ever take her for granted but when you go on holiday it generates a terrific amount of work, and this little holiday in Slovakia is an example of how it changes everything, and when we get back there's no food in the house and she has to go and buy it. It's a constant grind and - I've said this before - I think it is harder for her than me.
To work...
Going back to The World at One will be a climax of sorts but I don't want it to be that much of a climax because it's embarrassing to emerge like some knight in shining armour, and there's the princess who's been asleep for 100 years and you're going to plant a kiss on her pale lips and suddenly the programme will come to life again... because it isn't like that. Things have gone on quite well while I've been away.
· Nick Clarke returned to present The World at One in August this year but after the cancer came back made his last appearance on 12 September. He died last Thursday, 23 November 2006
This is an edited version of Nick Clarke's 'Fighting to be Normal', which was broadcast on Radio 4 on 23 June this year. To listen again to this programme go to bbc.co.uk/radio4/news/fightingtobenormal.shtml
· For more information visit sarcoma-uk.org
Obituary
Mark Damazer and James Naughtie give their appreciations of Nick Clarke at observer.co.uk/review
Nick Clarke 1948-2006
Born 1948, Godalming, Surrey. His father, the Evening Standard's cricket correspondent, died of cancer when Nick was 18. His mother died of cancer in 1990.
Educated Bradfield College, Berkshire and Fitzwilliam College, Cambridge.
Career Started out as a reporter on the Yorkshire Evening Post, then joined the BBC in Manchester in 1973. He moved to The Money Programme in 1979, then Newsnight (1984). Five years later, he moved to The World This Weekend on Radio 4. Presented The World At One from 1994 until his death last week.
Accolade Voted Broadcaster of the Year (2000) by the Broadcasting Press Guild.
Family Former BBC producer wife Barbara Want and four-year-old twins; three children from a previous marriage.
