Who Knew? Good Sense of Humor

http://society.guardian.co.uk/cancer/story/0,,1397219,00.html



Finding out that she had breast cancer was a terrifying bombshell, of course, but at least Melanie McFadyean encountered a few new truths. Blondes do have more fun, graveyard humour helps but funeral manners from the well-meaning are a pain, and whatever you do, don't believe the statistics



Saturday January 22, 2005

The Guardian



I thought it wouldn't be me. I even ignored the reminder to get a mammogram. Many people I knew had had breast cancer, so I mistakenly imagined that the law of averages was on my side. I was foolishly confident that their collective misfortune somehow protected me.

My best friend at school has had it. Of four close women friends of 25 years, two of us have had it. Of four of us sharing a flat at university in the 1970s, one has died from it and I have had it. Of four of us sat together at the Guardian 15 years ago, two of us have had it (and a third has died of lung cancer). Of four of us who shared childminders, three of us have had it. When I tried using it to get out of a parking fine, the woman on the end of the phone wouldn't play ball - she had just come through it.



One night last March, I went to sleep wondering how I was going to fit in a million things the next day, including going to a party for the colleague who'd had breast cancer and was giving up work. I woke at 3.30am with my finger on a lump, as though someone had crept in and arranged my hand as I slept. I was lucky. I caught it early. In the aftermath of diagnosis, I found myself on edges and in abysses I had never been to before. But as terrible as it was, it was never boring. It became a project, a journey, a new way of understanding myself, others and the world around me. There are things I would never have known or experienced if I had not had breast cancer.



1 Breast cancer does not, I learned, carry an automatic death sentence. When I was told I had it, I wept at the thought of leaving my son, my partner, my parents, my family, my friends. Thoughts ran on: I didn't know how to do anything but be alive, how would I do being dead? You can't be dead. Dead is not being. Helpfully, between crying jags and bouts of bewildered why me-ism, tumour humour kicked in fairly soon. I started to worry about the music at my funeral, and to feel cross that I wouldn't be there to enjoy the attention and hear people saying they wished they'd given me more of their time and love. I wanted them to listen to a lot of sad music: You're Gonna Make Me Lonesome When You Go (Bob Dylan), Nobody Does It Better (Carly Simon), J'ai Perdu Mon Eurydice (Gluck), Dream A Little Dream Of Me (The Mamas & The Papas), You Send Me (Aretha Franklin), Fairytale Of New York (The Pogues), Anywhere I Lay My Head (Tom Waits), A Thousand Kisses Deep (Leonard Cohen), I Get Along Without You Very Well (Nina Simone), Where Do You Think You're Going (Dire Straits) and, to show what a really nice person I am, the last one is C'mon Baby Let The Good Times Roll (Janis Joplin).



2 The sudden threat of death forces you to live in the moment, a skill I have never had and often envied in others. In the late 1960s and early 70s, those hippies lived in the moment, man. I, meanwhile, leaned on the wall in my bell-bottom jeans, smoking a joint, pretending to inhale and worrying about the future. For most of us who live in the affluent western world, the future is predicated on some sense of certainty - but after cancer your relationship with certainty vaporises. "Nobody's future is certain," people say, anxiously searching for words of comfort. "I might get run over by a bus tomorrow," they continue. It's always a bus and always tomorrow and they are always getting run over. I have never heard of anyone getting run over by a bus, although one friend assures me it happens regularly in Islington.



3 Being ill has been like a journey through challenging landscapes without maps, compasses or sensible footwear. It has been tough and frightening, and brought me face to face with doom, but it has enlightened me and has allowed for moments of extraordinary happiness. With our Anglo-Saxon stiff uppers, our socks heaved up to our armpits and our ramrod backs, we don't have the vocabulary for the big emotions. The Germans have the word for the doom and agony - weltschmerz - and the French for the happiness - joie de vivre. In English, if you talk about world pain or joy in being alive, everyone looks embarrassed and starts fiddling with their mobile phones. I felt these big emotions - they would come suddenly out of nowhere and consume me.



4 When people hear you have cancer, they foresee a death foretold. Cancer is the plague, the pestilence. They don't know that, although tragically too many still die, the survival rate for breast cancer is pretty good. I would never have guessed the best reactions to the news that someone has cancer are the batty, the jokey, the level-headed, the irreverent or the understated. One friend sent an email that made me laugh even as I stalked about in the shadows: "Love you, man." I met a friend in a car park one day. She put her arms around me and, stamping her foot and projecting her voice (she's an actor), bellowed across the car park, "Fuckit! Fuckit! Fuckit!" Someone else asked me if I was sure - had I been to the doctor, she wondered. As I went into chemotherapy, Paul Ellis, the consultant oncologist who treated me at Guy's hospital, said he would be shaking my hand when I was 100. It was the best thing he could have said, even if he does say it to all the girls.



We don't know how to react to being told someone has cancer. I am sure I have got it wrong in the past. We lapse into graveside manners. It's terrifying - the hand on the arm, the head on one side, the funeral eyes, the hushed tones - as though you are already on your way to the undertaker's. However much this plunges you into gloom and fear, you smile and offer comfort because these people are being kind to you. Occasionally you snap, then feel guilty for months.



5 Worst of all is the intrusive questioning. Just when a bit of stiff upper British restraint would go down very nicely, thank you, several people asked me, "What is your prognosis?" One asked if it were good or bad. Supposing it were bad - and luckily mine is not - would I have wanted to go into it? At least nobody asked me what one woman I know was asked by a friend: are you going to pass away?



6 Cancer, I learned, is capricious; no two cancers are the same. Several people responded to the news by telling me about their friends who had died of cancer, which rocketed me into renewed terror. One woman said her best friend had been "riddled" with it. A bloke in Greece, where we went on holiday, pointed to three houses in the valley below us, detailing the cancers that had killed their inhabitants during the preceding year. Oh! Really! My goodness. How interesting, pass the olives ...



7 You cannot imagine what it is like losing your hair, nor overestimate its visceral horror. Two weeks after the first dose of chemotherapy, it started coming out. It was everywhere - in the food, on the floor, the pillows,my clothes. There was so much of it you could have stuffed a three-piece suite. Three weeks later it was almost all gone, except for a few random wispy clumps. I stood in front of the mirror and saw the younger brother my father never had, an old man, his skin yellowing, his eyes pained, his mouth trembling. Then I saw a woman from the old Bedlam. No amount of tumour humour was getting me out of that one.



A friend happened by. She sat beside me as I pulled out the remaining hair - it came out very easily - and put it in a plastic bag. I was crying and, she told me afterwards, she was, too. When it was done and all that was left was a few crew-cut spikes, she took the hair to the dustbin, a kind of ritual.



One summer's day as I walked in the park, there was a sudden downpour. I was soaked within seconds. But the funny thing was my visibility was reduced to about a millimetre because, having much reduced eyebrows and eyelashes, I no longer had built-in natural windscreen wipers. I was blinded by the rain.



The four chemo treatments were spaced every three weeks from May to July. For several days after each one I'd be bedridden - green, yellow, grey - as sick and sad as a lush after a liquor binge in a heavy sea. Then, as the drugs wore off, I felt well enough to loll about in the sun in my back garden surrounded by exotic plants - a banana tree, a New Zealand ponga, a towering wild flax. So, ironically, I had a tan.



8 I have dark hair and had I not had cancer and gone bald, I would never have known how much fun it is being blond. I bought a cheap but stylish platinum wig from World Of Wigs. My son said I looked like Pauline Fowler in EastEnders. I sometimes cover my driving mistakes with rude hand gestures, but as a platinum blonde I had no need. One day I did a routine 25-point turn in a main road, holding up 17 different kinds of SUVs, double-deckers, pantechnicons and motorbikes, all, as it transpired, driven by men. Normally this would result in slanging matches in which the C-word would be spat at me, accompanied by threats of violence, but they all smiled indulgently and let me get on with it. It didn't have the same effect on other blondes, however. One I tangled with actually chased me at speed, zooming alongside in order to hurl an object at my head - luckily only an audio tape which dealt me a glancing blow.



9 More blond thoughts. In shops and restaurants, men sometimes opened doors for me. In the dark wig, life went on as normal: at my age men ignore you. But in the blond wig, to my surprise, they behaved quite differently. One or two even wiggled their eyebrows. I've never understood why anyone would find that sexy. A few times strangers said hello in the street and I'd stop and stare at them and say, sorry, do I know you? I am too long monogamous to chance upon men from some forgotten night, and I couldn't remember the right response to the street come-on, which is to stick your nose in the air and stalk off. I wish I'd had the nerve to take off the wig and see if they still tried a chat-up line, in the same way I used to wonder what blokes in the street would do if you actually gorremoff when told to do so.



I did whip the wig off once during an altercation with a member of Hackney's finest. I had to take my documents into the police station as I'd been done for jumping some lights. The woman at the desk wouldn't accept a faxed insurance document. When I asked why, especially as the phone number was on it and she could have rung to check it was kosher, she replied, "Because the people of Hackney often lie to me." Being a person of Hackney whose massive council tax pays her wages, that got my goat. It was a Friday, and she said I would have to come back on Monday with the correct documentation. I said I couldn't because I was having chemotherapy that day. She wasn't guilt-tripped by this as I had hoped she might be. She just looked at me with her eyebrows up and shrugged. She looked bored. Perhaps she thought that, like the rest of the people of Hackney, I was lying to her. In for a penny, I figured, and whipped off the wig to prove I was a chemo baldy. The eyebrows didn't lower even a fraction. I put it back on, crookedly since there was no mirror, and, huffing and puffing, left.



On hot days you just can't keep a wig on. As the baldness continued and the summer got hotter, I liked to think I looked more like a Buddhist cult leader than a giant aged baby. On the beach in Greece there was no hiding it. Occasionally people stared - mostly through dark glasses. I stared back through mine and eventually they looked away. When it began to grow back, I got bolder, especially when a lesbian friend told me I'd get offers. Disappointingly, I didn't.



10 Then it grew back. The new very short suede-head crop invited approaches from a different kind of stranger. One day in the local organic supermarket, I was trying to work out which soya milk to buy. (I would never have known the complexities of choice involved in going food faddy.) The piped music was a song that went "Run baby run", which was vaguely familiar. "Great music, isn't it?" said a bloke with a ring through his nose and topiarised hair. I nodded and smiled vaguely. "Underground - can't beat it," he went on. I thought underground was probably a genre with which I am unfamiliar, like garage, but, not wishing to seem old and out of touch, I nodded and smiled again. "As in Velvet," he added, implying that he realised I was faking. "I knew it was Velvet Underground," I replied tartly. On a roll, he added: "There's never been a bad song about heroin." I assumed he was a happy heroin user who thought he'd met a soulmate. I could see my image was confusing: part Buddhist, part monkey, part overweight astronaut. As I turned away, he said, "Or shoplifting - there's never been a bad song about shoplifting."



At the time of writing, it has turned into a thick crop of curls - what's known as the chemo curl. People pay fortunes to get their hair looking like this, I'm told. I think I look like a used car salesman. Give me a sheepskin coat and a chunky ring with a tiny diamond in it, and I could set up along the North Circular. And if I wore a glittering, square-shouldered jacket, I'd look like Liberace. Oh well, c'est la vie.



11 I'd never have found out how to relax if I hadn't been forced into this radical confrontation with life. I would certainly never have learned hypnosis, guided imagery and relaxation, taught to me by Jacky Owens, a wonderfully practical, clever and experienced cancer nurse. There is convincing data on how hypnotism, guided imagery and visualisation help cancer patients. They certainly help to reduce stress, and even the most hardened medics agree stress has an impact on health. I wonder now if my boob was trying to alert my brain to the fact that we had some trouble on board - which I was steadfastly refusing to attend to - when the brain got the hand to point the finger at the lump. I used to think the word relax was for wimps and sissies, that the whole point of life was to tear about on fire and burn, burn, burn. I know now that finding inner calm and stillness in the eye of the unavoidable storm that is life on earth doesn't mean you are a humourless wacko living in candlelight with crystals, mandalas and plinky-plonky music; it means you maximise your chances of getting more out of life and even perhaps living longer.



12 When I got sick, I stopped and looked so hard at my life, my eyes hurt. I had an image that summed up how I had been living leading up to the diagnosis. I was in a car driving through a desert landscape - Death Valley, perhaps - the distant desert horizons backlit by the moon against a purple and black night. Nobody was behind the wheel of the car, which was going so fast that pale silk scarves and pieces of paper were being sucked out of the open windows, but I was too exhausted to catch them. I relayed this to a therapist called John Oakley, a man who sat on a beanbag and asked me to shut my eyes and imagine what would happen if the car stopped and I got out. I went into the image and found myself as in a waking dream, getting out of the car and turning back the way I had come. I could see a tall man walking towards me in the distance. When I got close, I saw he was a skeleton. I greeted him and shook his hand, but told him firmly to go on his way and not to look back at me or follow me, and never to try to speak to me again. I told death where to go.



13 Cancer cells refuse to do as cells are supposed to and commit suicide - the medical term is apoptosis. They are wrongly named free radicals. I thought of them as neocons, which seemed apt as the continuing fallout of the war in Iraq coincided with my cancer. And while my neocons were getting blasted by some of the pharmaceutical industry's strongest chemicals, a bunch of radical religious neocon extremists, spurred on by the architects of the neocon corporate dark arts, were busy destroying Iraq and wasting taxpayers' billions.



When I found the tumour, I turned against my ethical code and went private; the advantage is that you don't wait - I'd done waiting in 1985 with a pre-cancerous cervical condition. I found the tumour on a Thursday at 3.30am and it was out £1,000 and a week later. But kindness and professionalism aren't predicated on money; you find them where the people running the show are on top of things, even though resources are minimal. When clinics are badly managed, chaos prevails and patients suffer.



That was my experience at Guy's hospital, where I had chemotherapy. In the clinic at Guy's, asking, for example, how long you might wait for your dose of chemo when you are sick and feeble - a reasonable request - means you feel like one of those nauseating prima donnas who disrupt the smooth flow of any queue, whether in a hospital or to board a plane. On the last chemo - the moment I had been counting down to for three months of hell - a nurse told me as I sat in the corridor (there was no waiting room) that my blood count was so low, I might not be able to have the chemo. This news was bleak on bleak. Anxious to get a definite yes or no, I stopped her 20 minutes later as she whizzed past, to ask when she would be able to tell me whether I'd have it. For fear of upsetting her, I asked like a mouse, and I am no mouse. I may as well have roared, because she lost her temper. I cried, she cried, we all cried. I had been warned on a previous visit by another nurse that it was like a "zoo" in there sometimes. The "zoo" days, like this one, were crowded, chaotic and nerve-racking. There weren't even enough chairs. There were sick people standing in the corridor, waiting.



The blame doesn't lie with the nurses. It lies with the accountants and bean counters, government ministers and planners who fail to get priorities right. The nurses and patients bear the brunt. How can it be that Guy's has glass-domed atriums where jazz bands play, but no waiting room and not enough chairs for cancer patients? Our boobs are more important than their bombs. Buy a chair, pay a nurse, put the arms trade out of business. Get a life.



I wrote to complain about the clinic and Guy's chief executive, Jonathan Michael, replied. "The service we offer is no longer adequate," he wrote, assuring me that improvements are in the pipeline.



14 Learning to live with cancer is like learning to live with heartbreak. At the end of an affair, for an unspecified length of time your first thought and the last before you go to sleep is of the love you lost. For months I woke up with the word cancer in my head. The time came, about seven months in, when it wasn't always so. And suddenly, as I cycled across the park one bright October morning, the fear lifted, like a veil, a mist, a shroud. I revelled in a sense of happiness so intense, I don't know how to describe it.



15 I have always thought of my friends and family as special, and they clustered and rallied around me, so that, however bad it got, I felt blessed. And the support of colleagues and students at City University, where I teach part-time, was wonderful, too. But the kindness of strangers when you feel your life is threatened was not something I'd ever had to depend on. I have never been seriously ill before and had I not been so ill, I would not have encountered people who - there's no more fitting metaphor - walk on water. I can conjure them up in my mind's eye, a shimmering little crowd of them, coming up over the horizon. One was Professor Kefah Mokbel, a leading European breast cancer consultant, who removed my tumour at the Princess Grace hospital. He works nonstop, but gives patients his mobile number and does not mind being rung when something scares you half to death. Another was the nurse who works with him, Joan Travers, good-humoured and full of empathy.



I also sought out complementary therapists. I saw a homeopath, a herbalist, a cranial sacral therapist and a counsellor. Call me cranky at your peril. I may not be able to quantify the positive effects of complementary therapy - there are no statistics - but I am sure that it helped enormously.



At Bart's hospital, where I ended up having radiotherapy, and now go for check-ups, the kindness and professionalism made for a calm and almost pleasurable experience, thanks to the consultant, Chris Cottrill, and to the cheerful registrars who dash about, harassed but always sympathetic, and Cheryl Inkin, who has been on reception at the clinic for many years and takes the trouble to learn patients' names and how we are.



16 "En el mundo del Destine, no hay statistica" - In the world of destiny, there are no statistics (attributed to Martin Alberto Filches and quoted in Stuart Archer Cohen's The Stone Angels). This wonderful quotation would have meant less to me before. The minute you are diagnosed with cancer, the professionals offer up statistics to comfort you, or not, as the case may be. I was 95% likely to be alive in 10 years after the first diagnosis, when it looked like a "well-behaved" cancer. After removing the tumour, it transpired that it was a grade three cancer, an aggressive one, and my survival rate went down to 90%. The chance of a recurrence is now 5%. These seem pretty good odds. But if you start looking at statistics, you can reconfigure them pretty much any way you like. I keep seeing articles about breast cancer with this figure of 15,000 women killed by it every year in the UK. Most of the cancer stories in the media dwell on death - death is good copy. And you find gratuitous morbidity where you least expect it: in her otherwise helpful book Your Life In Your Hands, Professor Jane Plant, who had breast cancer herself, blows it by claiming that the 63 women who followed her diet plan all remained cancer-free, but of the five who "refused to use it or 'cheated' . . . all [have] sadly had recurrences or have died". Many survive without even hearing of Plant's diet, let alone cheating on it. Someone should tell her - in the world of destiny, there are no statistics. Moreover, even as rates of breast cancer go up, deaths go down.



17 Still in el mundo statistica - one in nine women in the UK will be diagnosed with breast cancer in their lifetime, and 80% of these are over 50. More middle-class professional women get it. It looks as if this is because the postwar generation of middle-class girls were better fed and heavier, and so started having periods earlier. They had babies later, and fewer babies than working-class women, and when they breastfed, they did it for only a year. (Apparently having five babies and breastfeeding them for four years each helps prevent breast cancer. I can see that really catching on.) The connection seems to be the length of time for which we are exposed to high levels of oestrogen.



18 There are things you can do to ward off breast cancer: eat organic, avoid the xeno oestrogens (the bad, man-made ones) in plastics, filter your water and cut down on alcohol. There is controversy about dairy products, but some of the evidence suggests giving them up could help to ward off breast cancer. Prof Mokbel advises us to cut down on red meat and animal fats, and eat red grapes, pomegranates, cranberries, blueberries, raspberries and cherries. He advises upping fibre intake. Several hours of brisk physical activity a week reduces the danger by 30%. Avoid HRT, drink green tea and eat soya. Work on the body mass index - obesity increases the risk for postmenopausal women by around 50%, because after the menopause oestrogen is produced by fat cells. For a brief but comprehensive rundown on things to do to help avoid getting breast cancer, or having a recurrence, Mokbel's advice on www.breastspecialist.co.uk is good. Suzannah Oliver's book The Breast Cancer Prevention And Recovery Diet is helpful, and the Bristol Cancer Care helpline was, I found, the most sympathetic and well-informed. Bacup were also useful.



19 I read obituaries and always look at the dates of birth. Those of my vintage have often died "after a long battle with cancer". People with cancer have enough to deal with without feeling that every day of their lives must be a battle with the disease. People with bad hearts aren't assumed to be at war with their bypasses. You don't see "X died after a long battle with heart disease" - why should people with cancer be expected to take up arms? It is better to see cancer as a journey. Everyone says that being positive helps you to come through, and being positive during a journey seems easier to me than being positive during a war in which the enemy is all around you.



20 I have three aunts who had breast cancer; one sadly died during my treatment. If you are found to carry the faulty genes discovered in 1994 and 1995, you have the option of taking fairly extreme measures - have your ovaries removed to prevent ovarian cancer, or a mastectomy if you haven't yet had one. In order to establish whether or not you carry the gene, you must be tested. I went to see Dr James Mackay, consultant genetic oncologist, North East Thames and University College London. In the future, if properly funded, their work could lead to major breakthroughs in breast cancer. Getting money to activate any screening at all was a struggle, but where it has got to now is theatre of the absurd: the funding stretches to screening for only 60% of the "sequence" of possible genetic "spelling mistakes", as Mackay calls them. If on the 60% you are found negative, you can't relax because they might have found you positive on the other 40%.



Given the right breaks, research coming out of properly funded screening could work towards future preventive measures. The NHS spends only a tiny fraction of its cancer funding on prevention, surfing the waves of crisis instead. It gets more absurd - the money has been allocated for the proper screening, but so far the consultants have not been told when it will kick in at laboratory level. Hundreds of women have been promised that their 60% will be updated to the full 100% when the machinery is in place. But nobody seems able to say when that will be. You can get this test through a private company advertising on the internet for $2,900. They test the full 100% and results are through in three weeks. NHS tests take a year to come through - for 60%.



21 I am free of cancer now, I hope, and wondering how this interesting journey has changed me so far. I think I'm not as mean as I used to be, as quick to relish blame and find fault, as inclined to jump on board the mean ship schadenfreude. I've got a life and I'm going to keep it