Recording the progress of a terminal disease may seem a somewhat macabre pursuit, particularly for an architect who, for 20 years, has written nothing but official reports and letters, but I make no apology. It is better than waking an exhausted partner in the wee small hours to share fear, despair or hysteria, better than hurling crockery at a wall. It is some part of my fight for life. Maybe the relentless task of keeping a diary would eke out the days, I thought, make it all last longer, give researchers time to find answers. In the meantime, best ignore the questions that have no answers: why me, when, what the bloody hell for?
The first cancer to attack me was at the breast. It was October 1989 and I was 41. I had no lumps; I never had what I understood as a physical embodiment of breast cancer. Patrick felt something odd in the side of my stomach and I went to the GP. Six weeks later, with no news of a hospital appointment, a doctor friend urged me to go privately. The consultant at our local hospital expressed concern about an inverting nipple, which I'd dismissed as a sign of ageing. And then, suddenly, I was faced with consent forms for laparotomy and biopsy and, if necessary, hysterectomy and/or mastectomy. I agreed to all but the mastectomy. My uterus survived and the rest of me relaxed. I felt in the peak of health. But a month later they told us that the biopsy had shown invasive ductile carcinoma, requiring radical mastectomy.
We clutched at straws and sought second and third opinions. All confirmed that mastectomy was unavoidable. The left breast was removed on 4 January, 1990, two days after our 19th wedding anniversary. They gave me an expander, so I looked "normal", and then six months' follow-up chemotherapy.
Four years passed and just as we began to think I would be OK, New Year 1994, the alarm bells began again. My waist had boomed to a size 18. This was not, as I dangerously presumed, a sign of premature menopause, but primary cancer of the ovaries. Within a fortnight, I had had a hysterectomy. Still, apart from some temporary side-effects, I felt fit and returned to family life and my job as an architect as soon as I could.
Ten months later it was half-term. Patrick had stayed in Manchester, minding the practice, while I took the boys (Daniel, then 15, Roland 10 and Adam 7) to the south coast, to visit my mother and sisters. It was a blissfully happy week. The sun shone and we explored castles and walked along the cliff tops at Beachy Head. When we went ten-pin bowling, gran, who's 76, flung herself down the lane as energetically as any of the boys. It was coming out of McDonald's afterwards that I felt first one, then a little chain of lumps around my neck. There have been other little lumps, I told myself. It's a passing infection, I hoped, and said nothing to cloud the holiday.
My GP sends me for tests.
Maman phones and says whatever the results, we must be sure to get a second opinion in Paris. (Should explain that Patrick is French, his mother a retired obstetrician.)
Find Roland in a heap on the stairs. "It's not fair," he roars. He isn't talking about the new trainers he'd lost on the bus. Daniel, our oldest, looking fixedly at the side of the sofa, says: "If there's anyone Up There, he's got a mighty strange sense of humour." Adam raises his eyes to the ceiling and purses his lips with a sigh. I dread telling my mother.
Over the years, Patrick and I have developed a friendship with Tony, our consultant oncologist. At the clinic today, when not him, but a junior doctor bustles into our little cell, we breathe a sigh of relief. This cannot be the bearer of bad tidings. As he flicks lightly through the top inch of the file, exchanging pleasantries, it begins to dawn on us that this young man is blissfully unaware of any test, let alone of test results. I timorously mention results. Junior doctor scuttles off to be replaced by Big Cheese,Tony, who'd been away and not caught up with these latest developments. Caught wrong-footed, for once he forgets the professional flannel and blurts out the bad news.
We reel out of the hospital, dazed, into a warm autumnal day that is careless of our trivial catastrophe. Unable to confront work, we decide to confront the humdrum practicalities of life instead. Thus we find ourselves in the Tesco car park awash with tears on our little raft of despair (Ford Granada).
A well-meaning acquaintance spots us, (though, presumably, not the tears coursing down our cheeks) and knocks cheerfully on the passenger window. Patrick continues to stare fixedly through the windscreen, as if concentrating on blasting down the motorway at 90mph.
Friend (brightly): "How are you?"
Me (vocal cords lumpy): "Not so good" (isn't it fucking obvious?).
Friend (curiously): "What's the matter?"
Me (vocal cords twanging): "I've got secondaries" (the world has just caved in, can't you see?).
Friend (as if to child with bumped knee): "There, there, it'll be all right."
Me (vocal cords raw): "I'm not so sure" (please, please go).
Friend: "Don't worry. My friend Brangwen was diagnosed terminal and she went on for a long time."
Me (clutching at straws) "How long for?"
Friend (reassuringly): "Another 12 years."
Me (46 + 12 = 58. But I want another 30).
Awkward pause. Friend moves shopping bag to other arm.
Friend: "Sorry, but I've got to get on with my shopping. Just popped out in my lunch break."
Me (smiles): "That's OK, you go on" (for Crissakes just go).
Patrick and I buy pizza for dinner.
Tony is reluctant to consider all the ramifications without further tests. He needs to establish the source of the secondaries. Of the two primary cancers I've had, the breast was more advanced than the ovarian, so it's more likely to come from there. Since each migrates in different ways to produce secondaries, each requires different forms of treatment.
Bone scan. The most incongruous thing about a bone scan is that for a day the victim is radio-active. The first sign of it is in the waiting room, where the seats are a good metre apart. And there are dire warnings on the walls about which WCs patients may use after the injection. For scanning, the patient hugs a metal plate, not unlike a satellite dish, to various parts of the anatomy, with intakes of breath at instructions by a jolly young technician. This one scarcely seems to take breath herself, maintaining instead an inexhaustible supply of patter. Being the second time we'd meet in a few months, I was treated to a fully detailed update of the decorating that her father has been doing in her new house. Seems progress is slow, so I might never get to hear about the decor in the bedrooms.
Patrick and I make another attempt to confront the conundrum of our sons' education. If we could be sure that I would kick the bucket in, say, six months, we would take the bull by the horns and sail away en famille for a world cruise. But on the other hand, their lives go on, their education must be maintained.
Tony meets us after normal clinic hours to go through the options. Surgery is ruled out by the little necklace of nodules round my throat - no doubt because I would end up like Frankenstein's monster with bolts through the neck or the head would fall off. Chemotherapy comes at various pitches from standard to high with or without local radio-therapy.
This is a whole new ball-game with a new set of jargon. We set about it with all the enthusiasm that, in my wildest fantasies, I imagine the boys have for learning Latin. And we grapple with this awesome new language, the language of clinical trials.
Spent most of today trying to arrange cheap flight to Paris for second opinion by friend of Maman, colleague of Tony.
Whirlwind course through the French system, ultrasound and scans of all organs. The good news is that my bones and organs are clear, the bad that there is an early touch on my right lung. That is significant because the other malfunctions have all been on the left side.
Thoughts oscillate between the mundane (must water plants, buy more Marmite) and the abstract - for instance, the precise meaning of the word remission.
Oxford Dictionary: 1) The reduction of a prison sentence on account of good behaviour, 2) the remitting of a debt or penalty and 3) a diminution of force, effect or degree (esp of disease or pain).
My mind wanders to an incident that occurred some years ago. We were building a block of flats in the shell of a crumbled mansion. I asked one of the builders to fence off and protect the shrubs, which included a rather fine mock orange bush, a 10-foot Philadelphus. He must have taken his spade to it, because when I returned, the bush was reduced to a 10-inch stub. Contemplating his handiwork with some pride, the builder declared with smug conviction that he had "just set it back a bit". That's what I call remission.
Tony arrives for dinner. Patrick cooks salmon steaks in a butter sauce, which we eat on our laps while watching a riveting video of Tony's last international conference.
Tony explains the process of various cancer therapies by doodling quaint little graphs (vertical scale ALIVE over horizontal scale TIME, ending in dot, dot, dot and two question marks). This is all part of the new language of High Dose Chemotherapy and essential ingredients of the clinical trials I have agreed to undertake. Tony boasts 100 per cent remission for those who last the course. The treatment is not available on the NHS, and has a horrendous price-tag.
Tony invites us to his wedding in April, which implies he expects me to be on the planet for at least another spring.
We meet the earnest young doctor who will run the clinical trial. He outlines the sequence of events, giving considered answers to all the questions and progressively confirming the gruelling side-effects. Total hair loss pales into an insignificant vanity when confronted with the possibility of nail loss.
The day ends on a high note of warmth, generated by a women's evening, arranged by friend Kath. If laughter is truly the best medicine, then this one evening should have gone a long way to putting this cancer into remission.
Angela's tales of her latest amateur acting reduced us all to tears. She played the part of a Siamese twin in a most sympathetic, alternative production, conducted in a multi-storey car-park. For a few hours I keep at bay the eyeball-to-eyeball contemplation of various forms of medical Russian roulette.
This is an extract from the writer's diary, which is edited by Judy Meewezen. Some names have been changed. A year on, the writer is still continuing her treatment and keeping her diary.Reuse content