Byline: DEBORAH HUTTON
Health writer and mother of four Deborah Hutton was in shock when she was diagnosed with cancer. And she soon found that the endless concerned phone calls were uplifting but exhausting. So she turned to the internet- Ayear ago I considered myself the luckiest woman in London. Beautiful house, great husband, fabulous family, kids on track and growing up, as much interesting work as I wanted- I'd put the dog on the lead and walk over to the local shops in the sunshine marvelling at my own good fortune, thinking I wouldn't swap places with anyone in the world.
Then at a stroke this lovely run of luck ran out.
On 26 November 2004 at 4.30pm, at the age of just 49 and a half, which my kids think is ancient, but seems pretty young to me, I discovered that the irritating niggly cough I had had for the past two monthswas no trivial chest infection but an aggressive adenocarcinoma that had already spread well beyond my lungs to my bones, lymph nodes and possibly my liver as well. This was a stage IV cancer, said my consultant, Professor Stephen Spiro, backing out of the room apologetically, as though the whole sorry situation were his fault. Gaining the threshold, he warned me not to look this particular tumour up on the internet, as 'I would only terrify myself'. I didn't, but even so, it didn't take us long to find that in the distinctly unwonderful world of advanced cancer, stage IV is as bad as it gets.
There is no stage V.
If I was in shock, my friends and family were too. After all, I was the original Mrs Fit. A runner of half-marathons and a health writer by profession who had lived a pretty exemplary life, if you overlooked an unfortunate early smoking habit, kicked 23 years ago. Shocked, devastated, numb, disbelieving. These were the adjectives that came up again and again in the avalanche of letters and cards arriving in every post, the flowers and gifts and phone calls we received at all hours of the day, every day. While this outpouring of love and concern was wonderfully uplifting, it was also bone-crushingly wearying. In fact, it soon became clear that if the cancer didn't finish me off sharpish, the telephone most certainly would. It rang and rang until we almost started hearing it in our sleep.
At the same time, I recognised that calls had to be taken and visits received. Friends and family needed the reassurance of seeing me and/or hearing my voice, still clear and strong, and to realise that, even though I was now under sudden and most unexpected sentence of death, I was still very much with us. 'It was wonderful to see you, particularly as you are so much your old self,' emailed one friend. 'Somehow I'd imagined you horribly altered and so it was reassuring to see you still feisty and funny and full of life.' Those most in need of reassurance were those geographically farthest from the epicentre, like my sister Louisa, who lives in Berlin; not being able to 'pop' in to see me and catch up on the latest developments made her, and other far-flung friends, prey to the very worst fears and imaginings.
As we passed through the hoops of clinic appointments and second opinions, and the proposed treatment, the calls did not cease. If anything, they intensified. Friends needed to know, urgently, what was happening, what the doctors had said, how the clinic appointment had gone, whether I would be starting chemo this week/next week or any time soon, did I want the name of this wonderful acupuncturist/herbalist/ spiritual healer who had sent their friends' incurable cancer into miraculous indefinite remission? As the questions came thick and fast, I began to feel like the Ancient Mariner, compelled to repeat my story through all eternity. And then it suddenly came to me. Why not take advantage of the world wide web to keep everyone informed at the click of a mouse, in whatever remote corner of the globe they happened to be?
I had already experienced the wonders of the internet as an updating medium when a dear university friend, the TV director of Drop the Dead Donkey, Liddy Oldroyd, was diagnosed with a carcinoid tumour that had spread to her liver.
Her husband Peter started group emailing around a dozen of us with details of her hospital admissions, and visiting hours, at one point linking us up to a medical website that explained the complex surgical chemoembolisation procedure that she was about to undergo in such detail that we felt as knowledgeable as if we'd each been personally briefed by her consultant. When Liddy died in June three years ago - news which arrived on Peter's least welcome, most final and 73rd email - the group of recipients had grown to more than 80.
Back then, the internet diary or 'blog' (a contraction of 'web log') was a novel phenomenon.
Now there are over four million of these personal narratives swirling about in the ether, some as compulsively engaging as the next episode of Desperate Housewives, some just, well, shall we say, desperate. I had already been gripped by the observations of the Baghdad blogger, reprinted in The Guardian, detailing the minutiae of domestic life as Iraq was invaded, giving the impact of a war being fought halfway across the world an immediacy that John Simpson, Rageh Omaar and co could never hope to match. But it was stumbling on a different website last summer,
when still blissfully ignorant of the treacherous tumour in my lungs and researching a piece on IVF for this magazine, that alerted me to the potential usefulness of the blog in my own case. I became caught up in www.chezmiscarriage.com, a narrative of repeated failed infertility treatment as experienced by the daughter of a woman who took the notorious DES hormone in pregnancy which was found to have a disastrous reproductive legacy; the blog, written by an American woman known only as getup grrl, is charted with such bitter dark humour, I was quickly hooked.
When my own life story took its own dramatic turn for the worse, I realised that setting up a blog was going to be beyond me. However, thanks to a good friend, Frances Bentley, managing editor of Vogue - a magazine with which I have had an unbroken 25-year association - Conde Nast's IT expert, the marvellously patient and encouraging Dave Cohen, came to my rescue. In the short space of 30 minutes, a dozen or so clicks, and a few choices about the basic design of the blog and how public I wanted it to be (answer: not, from the outset it was intended as a private journal for family, friends and friends of friends), we were away. And to my amazement, Blogger.com, my web-hosts, weren't going to charge me for the privilege.
Being a writer, it seemed only natural to be keeping a record of the ongoing new soap opera.
People tell me I am being so brave, so marvellous, so honest, so forthright, in facing down the taboos of incurable illness and possible impending death. But, as John Diamond observed in one of his earliest columns for the Saturday Times, it comes so naturally to us ego-driven journalists to be writing about ourselves that the real challenge would be to write about something, or rather someone, else. Add the natural human tendency, well analysed by the sociologist Jackie Stacey in her brilliant book Teratologies, for cancer patients to make sense of their experiences by turning them into a narrative, and you'll see why for me blogging has become almost as natural as breathing.
Certainly, it was cathartic to treat the whole thing as a story, complete with heroes (my husband, Charlie, who quickly became Lawrence as in Lawrence Nightingale; the brilliant band of ever-cheerful nurses in the Middlesex's chemo suite) and villains (the cosmically insensitive nurse, Boo Hiss, who sent my already fragile spirits plummeting to rock bottom by ringing me at home with bad news that I had clearly indicated I was psychologically unready to hear).
Right from the very beginning, the blog has epitomised the true meaning of interactive. Friends and family can click on the site to find out what I'm up to, how I'm feeling and how the family's doing; while I can enjoy their observations and feel a little less alone. 'This is not a conversation between lucky us and poor you,' emphasises my Argentinean writer friend Guillermo Gil in an early comment. 'We are all at the airport. You've got an early flight, you are trying to change the ticket, and you are being incredibly spunky about it.
The rest of us think we have afternoon flights, but we haven't really looked at the close print-' 'If a problem shared is a problem halved,' asks Peter-James Gates, another regular respondent, 'how much is left when you share it with all of us bloggers?
Unfortunately, it does not reduce for you as much as the maths might suggest but I do hope it does reduce it some.' It sure does. For starters, the time it takes to post a new entry, usually less than an hour, is more than offset by the time saved answering calls and inquiries, however well meant. These days, the phone rings even less than it used to before my diagnosis - an advantage that works both ways. 'The blog,' says one friend, 'spares those of us fearful of making sporadic phone calls that, at some level, could be read as "I wondered if you're still alive".' It also spares me endless tedious repetition. For example, I met a friend last Sunday who I hadn't seen since September. Being able to pick up in the here and now, without wasting precious time backtracking over recent grim events, made it seem as though I'd seen her only yesterday.
In addition to its practical advantages, my spirits are hugely raised whenever I click on to the new comments that arrive after every 'post', finding some thought-provoking, others touching beyond belief, still others laugh-out-loud funny.
Hamish Dewar, for example, blogs from Delhi, to tell me that along with 'circus performers, students of mechanical engineering, unemployed youth, deaf people, war widows and freedom fighters', cancer patients qualify for a discount of up to 75 per cent on the nation's trains, which means I can buy a cut-price ticket for the five-hour journey from Delhi to Ranthambore for under [pounds sterling]1 in third class, 'first and second class being unavailable due to shortage of rolling stock.' Or Nick Mostyn, responding to my suggestion that the new improved NHS might now be getting its act sufficiently together to persuade us to vote Labour in this year's general election: 'Are you sure you are being given the right medicine?
I'd have thought that it should be chemotherapy and not an illegal, mind-altering recreational drug that sends you into a wild deluded fantasy of even momentarily considering voting for the incompetent shabby rabble that we suffer as our rulers? I believe that these drugs have a very short half-life and that you should revert to normal mental processes quite soon.' As the weeks have gone by, the blog has acquired a life and energy of its own. We have competitions, film reviews ('coming shortly from a bedside near you'), guest blogs from friends and family, a race to post the first responding blog ('I expect Sky Sports to cover it,' comments one blogee, proposing 'a handicap system for unfair advantage possessed by those several hours in front of/behind GMT'), in-jokes, little spats between blogees, even our own blog language. Many of the trusty band of regulars who post most days are known only by their blogonyms: hence we have Chubby of Chiswick, Hefty of Highbury and Tubby in Toronto, 'the blogging vicar', 'the absent son' (our eldest, Archie, who is at boarding school), and a posse of super-bright 13-year-old girls, who tell me flatteringly that my blog is 'much better than anything they put on our school reading list, we've even seen some teachers reading it in our lessons'. Less good, from my point of view, are those friends who rat to fellow blogees that, despite the strict ayurvedic no-acid, no-sugar, no-wine dietary regimen I am ostensibly following, I have been spotted quaffing copious glasses of red wine!
What's abundantly clear is that there is much mutual solace to be gained.
'Since the advent of the blog, I have certainly felt better about you because I know what is going on-' writes an old school friend, Libby Chaize. 'Of course, I also feel worse because of what is going on. But it is a better worse, if there is such a thing.' She likes the fact, she says, that it updates her almost as often as she needs on how I'm doing - once every third day - and gives her an emotional lead as to how open (or guarded) she should be on such sensitive subjects as illness and death. As bloggers go, I suspect I am pretty open and, while not in the same league as Catherine M whose sexploits were relayed in colourful detail, I do not shrink from talking about 'the C and D words' and my own sadness at having my future - the 40 years I always assumed I had in hand - snatched away from me; though, judging by the comments after each post, my respondents prefer the upbeat entries.
'I'm scared of death,' confesses one, 'and here you are wrestling with it upfront and way too close.' Finally, in true interactive spirit, the blog enables us to share the same emotions: sadness, outrage, helplessness, joy and laughter. 'I want to be included,' states Marianna Falconer, a close friend who provided the staunchest support in the dark days after the diagnosis. 'I want to sit and think and laugh and cry. I want to know how you are but I don't want to ring. I want to help, but I don't want to crowd. The blog almost intravenously connects us. It provides a forum to say some of the things that are easier to write than to speak. It exudes love and friendship and makes me feel good about human beings. I laugh and laugh. And it gives me such hope-'
'I only have to walk into a room and people make a beeline for me' Taken from Deborah's blog TUESDAY 7 DECEMBER 2004 Ever felt you were in the middle of the wrong movie?
Like you should be in Bridget Jones 2, and they keep running the script of Love Story or Stepmom? When Professor Stephen Spiro sat down on the chair by my bed in my isolation ward of University College Hospital Friday a week ago, and said, 'I've bad news, I'm afraid,' the words were so familiar they were almost corny. My response to the news that I had secondary cancer in my lungs and lymph nodes, oh yes, and in my bones for good measure, was not blind panic or utter terror or uncontrollable grief; it was the calm conviction that this was someone else's story, that any moment the man with the clipboard would step in and say, 'Cut!' And once that take was over, we'd be on to the next bit. But we weren't.
THURSDAY 30 DECEMBER Two nights ago Freddie says rather cheerfully, 'When mummy dies-' 'Shut up Freddie,' shoots Clemmie, who's sitting opposite, sending him the darkest look imaginable. 'She's not going to,' hisses Romilly in an equally clear warning tone.
'When mummy dies,' says Freddie again, fearlessly, a few decibels louder, for which he gets pelted with a grape Clemmie has flung at him.
Freddie, who is made of much sterner stuff, gives a disarming smile and starts again. 'When mummy dies, how many days will I get off school?' 'You won't be at school by then, you'll have grown up,' says Charlie firmly. But Freddie, ignoring this ill-mannered interruption, persists and, surprising us with powers of subtraction that are somewhat better than we had supposed, adds 'That means there will just be five of us, won't there?' FRIDAY 31 DECEMBER I only have to walk into a room these days and people make a beeline for me and kiss me and hug me and tell me how wonderful I am, and how beautiful I look. Springing up to vacate their chairs and sofa spaces, refilling my glass, making sure I am not left alone for a single second, makes me feel as thoroughly in demand as Santa Claus on the fourth floor of Harrods in the middle of December.
MONDAY 3 JANUARY 2005 The weight thing really is weird. After years and years of putting the splurgy bits on all too easily, and thinking no I can't possibly wear that skimpy swimming costume on the beach, I might frighten the horses, I now look at this newly emaciating me and think I really must cover up.
As a result the children have unanimously decided that mummy's New Year's resolution is to eat more.
Pass the chocolate truffles.
SATURDAY 8 JANUARY I'm very wary of self-pity. I have always believed that it drags you down to no purpose.
So why go there? And yet- I had always counted on living to a good ripe old age. In fact, I've always rather looked forward to turning into one of those opinionated feisty old ladies who say precisely what they think without giving a damn what the rest of the world might say.
It's the sadness of missing out on all the plans and surprises and adventures and triumphs and joys that lie in store - from the children's weddings to the world's unvisited places to the unplanted garden I always planned to create to yes, even, Bridget Jones 3. The unlived years. The golden years.
That's the grief and yes, I suppose, the outrage too that sometimes swamps me.
WEDNESDAY 23 MARCH It's so easy to feel caught up on the cancer conveyor belt: the best way of seizing back some control, I've found, is by reorganising things to suit oneself. Doing something as seemingly insignificant as changing the time of my chemotherapy, as I have now done twice in order to attend group lunches with girlfriends (vital health-giving gatherings, you will agree), may be self-centred but it feels infinitely empowering. It takes me back to hearing Lawrence LeShan, the US psychologist who was something of a cancer guru back in the 70s and 80s, addressing an audience at the Institute of Psychiatry more than 20 years ago. Difficult patients outlast the docile ones almost every time, he said.
So, all you fellow cancerees out there, let's forget compliant, and start getting bolshy instead.…