Thursday Soapbox: Regi Claire on illness and creativity

The Story Behind Fighting It

This is the first piece of sustained writing I have attempted in a very long time.
It all started last summer, 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 for a train to hit me, but so far all I could hear was its whistle in the distance.
The dog had to be put down 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, with potentially lethal consequences for our downstairs neighbour. And I was diagnosed with bowel cancer.
I had been hit at last. I felt almost – and rather perversely – a sense of relief.
When, barely 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: me, the family, the house.
We fetched our new 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 (and retain my sense of being a writer, in spite of everything) during the bleak days and months ahead, had come while everything else around me was beginning to fall apart: Two Ravens Press had accepted my collection of stories, called aptly (if coincidentally) ‘Fighting It’.
But it didn’t seem like I was fighting anything. Not yet. My first act after being diagnosed was to sift through the food stocks and spices in the kitchen cupboards, throwing out past-sell-by-dates, then refilling and labelling the jars – a bit like editing a text that has grown stale over time. My clothes were next. Some went to charity shops. A bellflower blue-green-and-white silk dress seemed made 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 Cancer Centre nearby.
Perhaps being a writer with an over-active imagination helped me picture (and prepare for) what lay ahead. I joined a young women’s group at Maggie’s and signed up for workshops: managing hair loss (the thought of losing my long hair was unimaginable); 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 latter was going to be my ‘real hair’, newly styled. The former my ‘real wig’, for glamour. That’s how I planned to keep my baldness a secret – with a story of reinvention.
On the first few days of my treatment I had to give two readings with my husband Ron Butlin, Edinburgh’s Poet Laureate (at Word Power Books to open the Edinburgh Fringe Book Festival, and at the National Library of Scotland). It felt good to stand there in front of packed audiences, pretending for those short moments that everything was fine. Ten days later I had another gig (at the Edinburgh International Book Festival). By this time, though, the strain of the treatment was beginning to tell and I had to fight exhaustion. I felt dissociated from my surroundings, as if I was in three places at once, performing not just in the bookshop tent, but popping chemo tablets labelled ‘cytotoxic’ (use gloves when handling) at our kitchen table, and lying immobile, half-naked, on the hard 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.
Eventually I became too weak to take 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. Into the fourth week I got so sick I had to be hospitalised, ending up in a cancer ward where I hid my pain and myself behind the curtains. I was taken to the radiotherapy department in a wheelchair – and I couldn’t have cared less. The books I had brought stayed in my bag. The writing notebook remained unopened. Nothing but my pain was real now. And my not being able to eat. The night before I was allowed home, one of the nurses suggested I go and see the Edinburgh 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 the house. Workmen began drilling and banging away – and it felt eerily right, the building being attacked on all sides. I was bedridden for over a month, unable to sleep, unable to read, to listen to music, or even to watch TV. Unable to write. My body was on fire from the effects of the radiotherapy – I had an unnatural tan and my skin began flaking off. Ron was frantic with worry and exhaustion. Friends brought food, lent us their car, vaccinated our puppy, sent flowers, gifts, cards and emails to cheer me up. My mother flew over from Switzerland. When she left, I was able to go for short walks again. Other friends gave us their bijoux gatehouse to stay in because the tenement stairs were too much for me. Soon afterwards, my sister and her family arrived to help.

Thanks to the treatment, the tumour had shrunk to near-nothing. I now had exactly two months before the operation in early December. Two months that I spent training and playing with Leila, our puppy, and revising the stories in Fighting It one last time. My publisher visited to show me a mock-up of the cover – it was to become my talisman in hospital. I also took part in the launch of an anthology which contained a reprint of my story ‘The Death Queue’ – my only ‘cancer story’ and written several years before I myself was diagnosed. It felt incredibly life-affirming and therapeutic to re-engage with the outside world as well as with my identity as a writer, tinkering with work that was very nearly finished.
With a week to go until my operation, we moved back into our flat – 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 the night before my operation, I jotted down various ideas for stories, projecting myself into a happier future. Still, that wasn’t where my imagination stopped. The ketamine used in the anaesthetic made me believe that the hospital staff were plotting to kill me (and it’s still very real in my mind…).
Christmas was only a week away when I checked myself out of hospital, ‘against doctors’ advice’. Although the operation and my response to the treatment had been a complete success (I didn’t even lose my hair), my salt levels were dangerously low. But with Ron and my parents 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 I was back ‘on stage’ – at a fundraiser for Gaza. And a few days later, at the Glasgow Homoeopathic Hospital, I learnt how to inject myself with Iscador, a mistletoe extract to boost the immune system.
The scaffolding has only just come down, after seven months of dust and darkness. The new slabs of stone are pale gold in the sunlight; the roof is now watertight; the birds have reclaimed the garden. It feels like a cloud has lifted. And I am ready to start afresh.

Regi Claire was born and brought up in Switzerland. Her first two books are Inside~Outside (stories) and The Beauty Room (novel). Regi has been awarded several prizes and bursaries for her work. In her introduction, Louise Welsh calls Regi’s new book of stories, Fighting It, ‘a truly fabulous collection’. For further information, please visit the Two Ravens Press website, here.