I was at university when cancer came into my life, and it’s never left. Like a malevolent black toad sitting on my shoulder, it will be with me forever, whether it kills me or I eventually die of something else.
I was at my student digs, a small, terraced property just up the hill from Brighton’s Elm Grove, when my father phoned. It was back in the day when all five housemates shared a single landline, and you had to have even the most intimate conversation while standing in the hallway. Dad’s sister had been experiencing some vague symptoms, he explained. Eventually the surgeons opened her up and … he didn’t finish the sentence. I already knew how it ended.
He went off to Israel to see her. She died while he was there, with my cousin’s wedding hastily scrambled forward so that he could attend during his stay.
My mother used to say that my father’s family had ‘all this cancer’ running through it, unlike her own oncologically pristine one. At the time, I regarded this as just a bit of Hungarian one-upmanship, a way of putting down the German side of the marital alliance. But in this, as in so much else, she turns out to have been right.
Author's own images shot on a digital camera.
My mother was right after all
I was working as an Assistant Producer at the BBC when it all began to unravel. The younger of my aunt’s two daughters got breast cancer at thirty, her sister at forty, and by now, my mother is beginning to look strangely prescient. The mutations BRCA1 (BReast CAncer gene 1) and BRCA2 (BReast CAncer gene 2), which put carriers at higher-than-normal risk of breast and ovarian cancer, were actually being discovered around the very time my cousin was having a lumpectomy. We could all see the way the disease was climbing its way along the family tree, taking pot shots here and there. By the time I got tested in 2003 it seemed like a foregone conclusion.
I was faced by two pleasant young female doctors. “I don’t suppose by any chance you are an Ashkenazi Jew?” the red-haired one asked with a soft Irish accent. Something was off about that, I turned to her Asian colleague. Very few non-Jews know the difference between the Eastern European Jewish ethnicity we insiders refer to as ‘Ashky’ and the Sephardis whose origins lie in Spain, or the Middle Eastern Mizrachis. But she knew because this was scientific fact: turns out that amongst the baggage we brought over from the ‘heim’ or homeland, there is a risk of being BRCA carriers more than six times higher than the population on average. I just shrugged like Tevye in Fiddler on the Roof, resigned to this unwelcome part of my heritage.
The diagnosis I couldn’t avoid
I had my ovaries removed as a precaution, but six months later, I found a lump on my right breast. The timing couldn’t have been worse. It was the end of December, and though Christmas clearly wasn’t much of an issue, we were just about to celebrate my daughter’s bat-mitzvah. This coming-of-age celebration involves a synagogue service and a big party with dinner and dancing. I insisted on keeping my diagnosis secret because I didn’t want anything to deflect attention away from our girl, and though I knew it was the right thing to do, I could see what enforced silence was doing to my husband. He looked like a man on the rack.
While I submitted to surgery then chemo, then more surgery and more, a cancer charity provided counselling for both of us. Mine was a middle-aged South African lady in a long skirt, who offered an amicable but superficial chat. My husband drew the long straw — his counsellor was so utterly transformative that under her influence, he began taking the slow steps to start training and, several years later, emerged with an MSc in counselling and psychotherapy. But, I wanted to shout, I — yes me — I was the one with cancer. It didn’t seem fair that he got the good counsellor, and I got the rubbish one, but as Tevye would tell you, some are destined to be impoverished milkmen and others get inspirational counsellors.
I don’t think anybody who experiences cancer can just leave it behind, the fear that it will come back occupies a permanent space in your head. But if you carry a gene mutation that means you are biologically at higher risk of contracting breast, ovarian and various other cancers, then you are physically in lockstep with it forever. It is inscribed into every cell in your body, and like many other carriers, I’ve found that deeply troubling.
A 2004 UK study shows “persistent worry in younger female gene carriers”, and it continues, “worry about cancer was not assuaged by surgery following genetic testing”. Angelina Jolie may have done a wonderful thing by talking openly about her preventative mastectomies, but women who follow her lead may not worry any less about getting cancer. These findings were partially confirmed by 2022 US research which stated that “Anxiety and stress were significantly worse in BRCA1/2-positive women compared to comparable US female samples”. Even worse than living with the anxiety on your own account is the fact that you also have a fifty per cent chance of passing this to your children. One of my three is a carrier, the others haven’t tested yet. Talk of the sword of Damocles…
Author's own images shot on a digital camera.
A trail of scars
Meanwhile, my body bears witness to my story. I was offered a nine-hour operation to take flesh and muscle from my back to craft new bosoms, but the album of photographs I was shown wasn’t enticing. First, the patchwork of different skin tones, then there would be significant scarring on the back too — both these things struck me as major downsides. I’d long found my breasts a burden — the catcalls and groping started when I was in my early teens, the weight of my 32Ds gave me backache and all my life I’d longed for a more Twiggy-like silhouette. I’d even considered breast reduction surgery. So here was my chance.
The outcome was mixed. I have no nipples and scars across my chest, which, twenty years later, are faded. Implants inserted under the muscles have given me smaller breasts than I had before, though not as small as I wanted because, I think, male surgeons find it difficult to hear women saying that they want small breasts. I had a preventative mastectomy on my left side, but for some reason, the surgeon decided to make the incision there in a different place, leaving me decidedly uneven.
It’s unsurprising that studies have shown that breast cancer and its treatment affect body image negatively, but there are positives too. This study talks about resisting appearance pressures and self-worth going beyond appearance, but overall I actually prefer my new shape — my breasts were beginning to droop after having three children, now they are fixed to my chest and I don’t even really need a bra. I feel lighter — I feel like a survivor.
