The 2cm wound to the right of my bellybutton had been oozing for days. A syrupy weep in the well of my abdomen. A surgical pothole so small that it felt almost indulgent to photograph it in my bathroom mirror. As if these tiny keyhole incisions dotted around my swollen stomach – one, two, three, four, five of them – bore no relation to the magnitude of the plunder beneath.
Magnitude. Or, should I say: weight. “Do you feel lighter?” a friend asked me a week after I had a total colectomy to save my life. To which I replied (somewhat contradictorily): yes and no. It didn’t take long for my doctors to start referring to my large bowel, laden with more than 400 precancerous polyps, as a “heavy burden” – and I think there is something poetic in that choice of words. A flash of humanity in an otherwise sterile place. Which is where I found myself in May last year, staring numbly at pictures of stoma bags in St Mark’s hospital in north-west London, the only hospital in the world to specialise entirely in intestinal and colorectal medicine.
I arrived here by sheer fluke. My trip to the GP, only six months earlier, had been precipitated by a few throbbing aches in my feet and some mild fatigue. A routine referral to check my iron levels led to a diagnosis of anaemia which, in turn, led me to my toilet at home with a faecal test. Only a year earlier, I’d read the words of NHS chief executive Amanda Pritchard urging us as a nation “not to be prudish about poo” in light of the startling fact that bowel cancer is now the fourth most common cancer in the UK. And yet I didn’t think this plea related to me as a 40-year-old woman. I didn’t even think this test was necessary. Until my GP rang me 24 hours later, in a calm yet brittle voice that I had got to know only too well over the six-year obstacle course of my late husband’s brain tumour. I had been prudish. Traces of blood had been found.
It is impossible to speak elegantly about bowels and faeces and I wonder whether this explains why it’s taken me so long to write about mine. Our bodily functions don’t always make for neat prose. My diagnosis doesn’t exactly make for a neat story. Although the number of under-50s being diagnosed with colorectal cancer has seen a dramatic uptick, an increase of nearly 80% over the last three decades – an alarming trend that experts are still researching as to the cause – my own cause for intestinal concern, confirmed by genetic testing last year, was an unusual one. Familial adenomatous polyposis is a rare hereditary syndrome, caused by a defect in the adenomatous polyposis coli gene, a tumour suppressor gene, that raises the risk of developing colorectal cancer to nearly 100%. To make things more critical, when I discovered that this is what I had I was a year beyond the average age at which an individual develops this kind of cancer: 39.
Hope for the best, prepare for the worst, isn’t that how the saying goes? I considered this impassive advice as I scanned my colonoscopy procedure report with its vibrant imagery of my glistening growths, captured with an Olympus colonoscope, all salmon-pink like the gills of a fish. “The bowel has to go,” I tearily announced to friends.
Although my susceptibility to developing rectal cancer carries the same odds, a 100% lifetime risk, the “urgency” of this particular risk is open to interpretation. Forty polyps in the rectum may seem stark when compared with the few small growths many people develop in older age. But with all of mine at less than a centimetre I could, according to my medical team, adopt one of two approaches: remove both organs simultaneously (undergoing something called an ileostomy) or keep my rectum for now and thus postpone the need for a stoma bag – with regular surveillance.
“They don’t prepare us for these choices at school, do they?” a friend quipped as I began sharing my news. The pressure to make such a life-affecting decision with no medical experience felt almost gravitational with its drag and pull. It’s a forcefield that also yanked me unexpectedly backwards into my past. I’d had cancer before, a rare type of cancer that affects the thyroid gland, when I was 19. How jarring that this recent diagnosis should explain that summer I spent on a radioactive ward feeling othered by a disease that couldn’t be accounted for. Only now it felt loaded with a new surgical quandary that I alone could answer. Should the rectum stay or go?
I oscillated between both poles, but my instinct kept telling me to hold back. Was I being reckless in saying I wanted to give my body a chance? Worse still: naive? During one consultation, my surgeon, presuming the reasons for my apprehension, showed me pictures of younger women baring their stoma bags in their swimwear. “No one will see it,” he assured me. And while I could appreciate that his assumption was based on many a woman’s legitimate concerns, a little voice inside of me wanted to reply, but I will see it. Because this wasn’t about an external gaze. It wasn’t about swimwear, either. It was about the precious connection I had with my body. A connection that now felt painfully disjointed. Something inside of me had gone horribly wrong (again) and in the absence of any control over these mushrooming adenomas, I felt fiercely protective of whatever autonomy I still had left.
“My husband died of brain cancer,” I blurted out to a nurse practitioner about 10 minutes after I had made the decision to keep my rectum. At the time I regretted saying these words. I felt embarrassed, even. As if I’d shared too much of myself and made things more overwrought than they needed to be. What relevance did this chapter in my story have in this room? What was I expecting this nurse to say in return? It would take me a little while longer to recognise the correlation between these two traumatic junctures in my life. That the loss of an organ is, in fact, another kind of grief. In my case, a large incision upon an ever-deep and still-repairing wound. “You’ll grieve losing a part of you,” my friend texted me in the wake of my colectomy – a friend who, only years previously, had undergone an equally lifesaving hysterectomy. At the time of reading her words, this emptiness felt almost physically heavy in its shape and form. Until I realised, and not for the first time, that all grief is a surrendering of sorts, a relinquishing to something far greater than yourself.
And yet relinquishing to that greater thing hasn’t disenfranchised me as a result. If anything, it’s made me hold ever more tightly on to the choices I have. Twenty years after my cancer diagnosis, and six years since the death of my husband, this latest health scare has helped me to understand what autonomy actually means when your body becomes a site of complication. We are all passengers of our own physicality, and sometimes that physicality dictates the terms, but that doesn’t mean that there aren’t small gains to be made in the thicket of injury. The neurologist Oliver Sacks called the limbo one finds oneself in sickness “the night-womb” before a new life has been created. Perhaps this is the most apt analogy I’ve (so far) found.
Don’t get me wrong, losing my large bowel hasn’t been easy for me to yield to. My toilet habits, for instance, have been changed irrevocably. The exhaustion comes and goes. And eating is still a trial-by-error assault course that has forced me to cross out many of the foods I love. But the difficulties I’ve encountered along the way have given me a newfound respect for all the ways my body has been able to adapt and acquiesce. It’s also shown me just how sacred my bodily choices are.
Over the last year, I have witnessed my body tackle its losses in such an extraordinary way that I have often felt like a bystander in my own internal recovery. Yet standing in front of my bathroom mirror, only weeks after surgery, I looked at the bruised swell of my belly and was overcome by a sense of achievement. Which is, at the heart of it all, my body’s strength – its will to recover.
As my scars begin to soften and fade, I am no longer feeling diminished by it as I did when I was diagnosed. I don’t know what the future holds and I may still need a stoma bag in the years that follow. But somewhere in the uncertainty of what comes next, I have found a sureness that feels just as potent. Yes, my body has failed me. But in spite of the odds, it has saved me too.
