It all started in the summer of 2008, with our golden retriever’s belly swelling up – a phantom pregnancy, the vet said. Then there was the smell of rotting wood in our toilet – a leaking joint along the cistern pipe, my husband said. Then my blood test came back – a slight anomaly, my GP said. Nothing serious.
No, nothing serious, except for that shaky feeling in the pit of my stomach. Like I was waiting to be hit by a train and all I could hear was its whistle in the distance.
Our dog had to be put to sleep because her abdomen turned out to be full of blood from a ruptured liver tumour. The toilet bowl needed replacing; it was leaking and balanced on nothing but a cracked waste pipe, no flooring. And I was diagnosed with cancer. Bowel cancer.
I had been hit at last. And felt an almost perverse sense of relief.
When, a week later, we heard from Edinburgh City Council that the three-year-old statutory notice for building repairs on our tenement (back and front stone replacement and roof work) was finally going to be enforced, it couldn’t have happened at a better time. Everything was up for renewal: the house, the family, me.
We fetched our new retriever puppy on 1st August, the Swiss National Day, three days before I started my five-week course of combined radio- and chemotherapy.
The only other ray of light, which was to help me cope during the bleak days and months ahead, had come while everything else around me was beginning to fall apart: a publisher had accepted my second collection of stories, called aptly (if coincidentally) Fighting It.
But it didn’t seem like I was fighting. Instead I practised letting go. The day of the diagnosis, I set to sorting out the food stocks and spices in the kitchen cupboards; I threw out everything past its sell-by-date, then refilled and labelled the jars, picturing the hands that would pick them up, after me. My clothes came next. Some went to charity shops. A bellflower blue and white silk dress seemed perfect for a French artist friend. And then I was ready for a visit to Maggie’s Centre – such an uplifting place, in stark contrast to the nearby Cancer Centre at the Western General.
Being a writer with an over-active imagination probably helped me prepare for what lay ahead. I signed up for workshops at Maggie’s: managing hair loss (the thought of losing my long hair was terrifying); how to look good (and feel better); and Relaxation / Visualisation. With a girlfriend I went to a wig shop where I selected a couple of wigs – one with flowing long hair, the other cropped boyishly short. The former was going to be my ‘real wig’, for glamour; the latter my ‘real hair’, newly styled. That was how I planned to keep my baldness a secret – with a story of reinvention.
A few days into my treatment, I took part in two readings with my writer husband, Ron Butlin – at the National Library and in the Edinburgh Fringe Book Festival. It felt good to stand in front of packed audiences, pretending for those brief moments that everything was fine. Ten days later, though, during an event in the Edinburgh International Book Festival, I had to fight exhaustion. I felt dissociated from my surroundings, as if I was in three places at once: performing in the bookshop tent with a cameraman filming me for a promo for Edinburgh UNESCO City of Literature; at our kitchen table, popping chemo tablets labelled ‘cytotoxic’ (‘use gloves when handling’); and lying immobile, half-naked, on the hard, cold surface of the hospital’s radiotherapy machine, counting down the seconds as I visualised those bastard cancer cells being laser-blasted to kingdom come. Yes, visualisation was me at my most creative in those first weeks of hell.
Increasingly, that sense of dissociation, of no longer belonging to life and the living, grew stronger. Returning from hospital one day, I passed a group of Fringe Festival clowns in the street – and their happy-go-lucky exuberance made me feel as unreal as the blurry reflection in the shop window opposite, of a woman with long red hair.
And yet, I didn’t appear ill. Sitting in a pavement café with Ron and a friend, I’d just taken off my sunglasses and was laughing about something when a stranger approached. He didn’t ask for money or directions. He said, ‘Are you married?’ Then tried to chat me up. The encounter left me strangely exhilarated: so I was still attractive, even as my body was being ‘eaten’ from the inside…
Eventually I became too weak to catch the daily bus to hospital and had to be chauffeured like a decrepit old lady by friends (we’d sold our car years ago). When my weight dropped below forty kilos, I stopped checking. By the fourth week I had to be hospitalised, ending up in a cancer ward where I hid behind the bed curtains. I was taken to the radiotherapy department in a wheelchair. The books I had brought stayed in my bag. The notebook remained unopened. Nothing but my pain was real now. And my not being able to eat. But then, the food wasn’t exactly tempting.
The night before I was allowed home, a nurse suggested I go and see the Festival Fireworks from the ward balcony. I shivered as I watched the display in the company of two other patients, one of them an intrepid smoker emaciated to stick thinness, the other attached to several tubes on wheels. Transience and mortality had never been brought home to me more poignantly.
The treatment left me near-debilitated. Just as it finished, the builders’ scaffolding went up, shrouding our house. Workmen started drilling and banging away – and it felt eerily right, the building being attacked on all sides.
I was bedridden for a month, unable to sleep, unable to read, to listen to music, to watch TV even. Unable to write. My body was on fire from the effects of the radiotherapy – our formerly soft bed sheets now felt like sandpaper; I had an unnatural tan and my skin began to flake off. Ron was overwrought with worry and exhaustion. Friends brought food, lent us their car, vaccinated Leila-Puppy, sent flowers, gifts, cards and emails to cheer me up. My mother flew over from Switzerland to look after us. By the time she left, I was able to go for short walks again. Other friends gave us their holiday home to stay in because the tenement stairs were too much for me. My sister and her family arrived to lend support.
Thanks to the treatment, my tumour had shrunk to near-nothing. I now had exactly two months before the operation in early December, two months I spent building up my strength and training Leila, even running up the slopes of Arthur’s Seat, and revising the stories in Fighting It. My publisher visited me with a mock-up of the cover; it was to become my talisman in hospital.
A week before my operation we moved back into our flat – only to find the boiler leaking and beyond repair. First the toilet, now this… As if the house was playing a grim joke on us, imitating my body’s faulty ‘plumbing’.
In hospital on the eve of the operation, I jotted down various ideas for stories, trying to project myself into a happier future. A few days later, due to a haemorrhage in my abdomen (an eerie echo of what had happened to our previous dog), I needed another operation.
Christmas was a week away when I checked myself out of hospital, ‘against doctors’ advice’. Although the operations and my body’s response to the treatment had been a complete success (I never even lost my hair), my salt levels were dangerously low. But with Ron and my mother and father caring for me, I was soon well enough to proofread Fighting It and to take Leila for longer and longer walks. By the end of February 2009 I was back ‘on stage’ in a fundraiser for Gaza. Soon afterwards, at the Glasgow Homoeopathic Hospital, I learnt how to inject myself with Iscador, a mistletoe extract that boosts the immune system and which helped me recover from a final operation, in May that year.
By then our scaffolding had been taken down, after seven months of dust and darkness. The new slabs of stone shone pale gold in the sunlight. Our roof was again watertight and the songbirds reclaimed our garden.
FIGHTING IT was launched on 18 June 2009 – almost exactly a year to the day after my original diagnosis. Well over a hundred people attended and we all had a great party.
So here’s to fighting it – and to new beginnings!
© Regi Claire 2009