‘I Felt Like a Bystander in My Own Internal Recovery’: One Woman’s Struggle for Health After a Life-Changing Diagnosis

TThe 2 cm wound to the right of my belly button had been oozing for days. A syrupy cry in my lower stomach. A surgical hole so small it almost felt indulgent to photograph it in my bathroom mirror. As if these little keyhole incisions around my swollen belly – one, two, three, four, five – had no relation to the extent of the plunder beneath them.

Size. 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 wasn’t long before my doctors began to view my colon, loaded with more than 400 precancerous polyps, as a “heavy burden” — and I think there’s something poetic in that choice of words. A flash of humanity in an otherwise sterile place. That’s where, last May, I found myself staring numbly at photographs of ostomy bags at St Mark’s hospital in north-west London, the only hospital in the world to specialize entirely in bowel and colorectal medicine.

I ended up here by chance. My visit to the GP just six months earlier was preceded by some throbbing pains in my feet and some mild fatigue. A routine referral to check my iron levels led to a diagnosis of anemia, which in turn led me to the toilet at home for a stool test. Only a year earlier I had read the words of NHS chief executive Amanda Pritchard calling on us as a nation to “not be squeamish about poo” in light of the startling fact that bowel cancer is now the fourth most common form of cancer in Britain. Britain is. And yet I didn’t think this plea applied to me as a 40-year-old woman. I didn’t even think this test was necessary. Until my doctor called me 24 hours later, in a calm yet fragile voice that I had come to know all too well during the six-year obstacle course of my late husband’s brain tumor. I had been squeamish. There were traces of blood found.

It’s impossible to speak elegantly about bowels and stools and I wonder if this explains why it’s taken me so long to write about mine. Our bodily functions do not always make for beautiful prose. My diagnosis does not exactly provide a nice story. Although the number of people under the age of fifty diagnosed with colorectal cancer has seen a dramatic increase, an increase of almost 80% in the past thirty years – an alarming trend that experts are still investigating to determine the cause – my own cause of intestinal problems, confirmed last year by genetic testing, was unusual. Familial adenomatous polyposis is a rare hereditary syndrome caused by a defect in the adenomatous polyposis coli gene, a tumor suppressor gene, that increases the risk of developing colorectal cancer to almost 100%. To make matters even more important, when I found out this is what I had, I was a year older than the average age for someone to develop this type 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 reviewed my colonoscopy procedure report with its vivid images of my glistening growths, captured with an Olympus colonoscope, all salmon pink like a fish’s gills. “The intestines have to be removed,” I announced tearfully to friends.

While 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 grim compared to the few small growths that many people develop in old age. But because my entire body is less than an inch away, according to my medical team, I could take one of two approaches: remove both organs at the same time (undergo something called an ileostomy) or keep my rectum for the time being and thus the postpone the need for a stoma. bag – with regular supervision.

“They don’t prepare us for these choices at school, do they?” a friend joked as I started sharing my news. The pressure of making such a life-defining decision without medical experience felt almost heavy. It is a force field that has also unexpectedly dragged me back into my past. I had previously had cancer, a rare form of cancer that affects the thyroid gland, when I was 19. How shocking that this recent diagnosis should explain why I spent the summer in a radioactive ward feeling left out by an illness that could not be explained. for. Only now it felt like it was fraught with a new surgical dilemma that only I could answer. Should the rectum stay or go?

I wavered between both poles, but my instincts kept telling me to hold back. Was I reckless when I said I wanted to give my body a chance? Worse yet: naive? During a consultation, my surgeon, suspecting the reasons for my anxiety, showed me photos of younger women exposing their ostomy bags in their swimwear. “No one will see,” he assured me. And while I could understand that his assumption was based on the legitimate concerns of many women, a little voice inside me wanted to answer: But I’ll see. Because this wasn’t about an outside view. 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 in me had gone terribly wrong (again) and in the absence of any control over these mushrooming adenomas, I felt fiercely protective of whatever autonomy I had left.

“My husband died of brain cancer,” I blurted out to a nurse about ten minutes after I made the decision to keep my rectum. At that moment I regretted saying those words. I even felt ashamed. Like I had shared too much of myself and made things more overwrought than necessary. What relevance did this chapter of my story have in this room? What did I expect this nurse to say back? It would be a while before I recognized the correlation between these two traumatic moments in my life. That the loss of an organ is actually a different kind of grief. In my case, a large incision in an increasingly deep and still healing wound. “You will grieve losing a part of yourself,” my friend texted me in the aftermath of my colectomy—a friend who had undergone an equally life-saving hysterectomy just a few years earlier. As I read her words, this void felt almost physically heavy in shape and form. Until I realized, and not for the first time, that all sadness is a kind of surrender, a surrender to something much bigger than yourself.

And yet giving up that greater thing has not robbed me of my rights. In any case, it has made me hold on tighter to the choices I have. Twenty years after my cancer diagnosis, and six years since my husband’s death, this latest health scare has helped me understand what autonomy actually means when your body becomes a place of complications. We are all passengers of our own physicality, and sometimes that physicality dictates the terms, but that doesn’t mean there aren’t small gains to be made in the thicket of injuries. The neurologist Oliver Sacks called the limbo in which one becomes ill ‘the night womb’ before new life has been created. Perhaps this is the most appropriate analogy I’ve found (so far).

Don’t get me wrong: losing my colon wasn’t easy for me to admit to. For example, my toilet habits have changed irrevocably. The exhaustion comes and goes. And eating is still a matter of trial and error, which has forced me to cut out many of the foods I love. But the challenges 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 has also shown me how sacred my physical choices are.

Over the past year, I’ve watched my body cope with its losses in such extraordinary ways that I often felt like a spectator in my own internal recovery. But as I stood in front of my bathroom mirror, just weeks after surgery, I looked at the bruised swelling of my abdomen and was overwhelmed with a sense of achievement. And that, at the heart of it all, is the power of my body: the will to recover.

Now that my scars are softening and fading, they no longer make me feel worse than they did when I was diagnosed. I don’t know what the future holds and I may still need an ostomy bag in the years to come. But somewhere in the uncertainty of what comes next, I’ve found a certainty that feels just as powerful. Yes, my body has failed me. But despite the setbacks, it also saved me.