It wasn’t happy birthday news. My gynaecologist called as I sat at the edge of the Hudson River in early June sunshine, enjoying the start of a gorgeous day.
“How bad is it?” I blurted.
The biopsy of my left breast revealed DCIS, ductal carcinoma in situ, the best-possible – thank God – form of breast cancer, with a 98 per cent survival rate. Here, where I live in a suburban New York town, standard treatment is lumpectomy and radiation, followed by years of an oestrogen-suppressing drug. I knew I was lucky, even as I felt frightened and overwhelmed.
“You’ll be on a learning curve now,” my doctor said, adding kindly, “some don’t even consider this as cancer.”
The learning curve did prove steep, even for me, a journalist who’s covered medical stories. I became a sort of Alice in Wonderland, moving daily between cancerland and normal life, full of the healthy, yet unscathed.
We decided to share my news on social media only with close friends, and loving wishes flooded in from around the world, for which my husband and I were deeply grateful.
Yet, many automatically assumed the worst: “You can fight this!” “You’re a badass!” “Best of luck with the battle!” One friend, to my dismay, sent me a book about radical remission – without even knowing my positive prognosis. No one seemed to realise how relatively fortunate I am. That also made it awkward as gifts and flowers arrived; I felt guilty for not being as sick or terrified as everyone assumed I must be.
I felt guilty for not being as sick or terrified as everyone assumed I must be
With so many medical appointments and seven physicians, and tests and treatments that would consume more than five months, I kept trying to flee cancerland whenever possible. Where I live, though, it’s almost impossible to avoid being confronted by ads on radio, TV, buses or even a debit-card machine for a cancer hospital or drug. When healthcare is a competitive, for-profit enterprise, the word “cancer” is annoyingly inescapable, leading some who’ve yet to face it to think they understand what those facing the disease are going through.
One of the many lessons I learned quickly is how deeply individual breast cancer and its treatments are. At the radiation clinic, where I lay face down for 48 seconds a day for 20 days, I made two new friends – none of us with the same condition or treatment regime.
The clinic, with its enormous fish tank, free coffee and tea and snacks and a television and new magazines, felt oddly, comfortingly luxurious. Lovely photos of nature covered each wall. The mammoth grey radiation machine became my daily companion, and the two techs, Yadi and Susan, were a funny, warm blessing, covering my bare back with a heated blanket every time, apologising as they manoeuvred my breasts and body into position. It was also comforting to be scrutinised daily, to have weekly check-ins with the radiation doctor and even a social worker on-site to chat with.
Outside the clinic walls, though, I stepped back through the looking glass. How much could I share, when and with whom? Multiple invasive tests, surgery, a nasty post-op infection and radiation each sucked up my energy, and required unpaid time to heal. Radiation made my breast blister, peel and darken and my nipple itched so fiercely I started wearing a gel pad used by nursing mothers – I’d never had children, but a mum-friend recommended them.
And, if mine wasn’t even “real” cancer, how dare I complain anyway?
Self-employed, I also had to decide which clients to tell, and in what detail, as my work pace slowed. Would they, too, ignorantly also assume the very worst?
The clinic became my refuge, a place where everyone knows what cancer inflicts, physically and emotionally. My radiation doctor, a woman in her late thirties, was both warm and efficient. The staff were unfailingly kind and upbeat, and all gathered for their lovely ritual while I rang the gong, celebrating the end of treatment.
Outside those walls, though, I often withdrew from the still perfectly healthy.
I didn’t envy or resent them, but had quickly learned how little they understood this disease in its daily, lived experience. Confusing to some and misleadingly cheerful to others, I didn’t look or behave seriously ill. Because I didn’t need chemotherapy, I showed no visible signs of cancer even while I suffered pain for long and exhausting weeks after surgery and treatment. Lauded as “brave” and “a trouper”, I didn’t feel brave at all, and cried for hours with my husband and a few close friends out of fear, pain, exhaustion and frustration.
None are lessons one ever wants to learn. But they’re also lessons we wish we didn’t have to teach.