Extract
This week in June is always difficult for me. Six years ago over the Youth Day weekend, I found a lump in my right breast.
I remember everything about that day. A cold morning and a gloriously warm middle of the day that I spent with my lovely niece Zoe. We had breakfast. And laughed. Shopped. And laughed. Teased each other. And laughed. Up to that point, it was a good day.
Mid-afternoon, having dropped Zoe at the Sandton Gautrain station, I settled on the couch to watch that week’s episode of Game of Thrones. A treat I’d saved for Saturday afternoon.
It was the now famous red wedding episode, in which the matriarch of Winterfell, Catelyn Stark (my favourite character!) is slaughtered. I remember being so shocked that I raised my right arm to cover my mouth with my right hand and brushed against my breast. That’s when I felt it; a round knob under my skin.
A bevy of invasive tests diagnosed a malignant tumour. Not just any carcinoma, the surgeon told me, but an aggressive, fast-growing one that needed to be dispatched with speed.
Everyone I dealt with — my personal doctor, the surgeon, the oncologist, the radiologist, the nuclear medicine specialist, the hospital nurse; everyone — underlined the urgency with which we needed to act.
This tumour is six months old, my radiologist said. An orthodox Jew whose unstinting belief in God, who he mentioned often, comforted me. I trusted him when he said I needed surgery quickly. The tumour was new, but growing rapidly and had to be excised before it spread to other parts of my body.
I was utterly perplexed by it all. It was so sudden, a shocking surprise. Of course, it was unexpected. Who knows beforehand that on a just-in-case visit to their doctor to get an explanation for a small, round lump under the skin they’ll be told they have a dread disease?
I had no experience to draw on to make informed decisions, no previous knowledge of cancer, no idea of what to expect, or even what questions to ask. And so I was forced to rely on the advice of those who knew, members of the medical profession mostly. Double mastectomy. Estrogen-fueled cancer. Stage one. Fast growing. Chemotherapy. One year. Words flew at me, past me.
The literature was too frightening to read. Confusing too. Dr Google was all doom and gloom, with horror stories about operations gone wrong, about incisions that never healed. Websites dedicated to “women with breast cancer” were filled with stories about botched reconstructions, uneven breasts. The broken breast pictures filled me with horror.
Worse, there were stories about the loss of sensation in women’s most erogonous zones and forever altered intimate relationships.
There were hollow attempts at breast cancer humour from women in emotional distress. I was scared and lonely and angry. Mostly I was angry. Furious that my body had let me down. My own mortality shifted into the frame as death moved into the realm of the possible.
I have dark tendencies that translated into an obsession with dying; death poetry became my staple literary diet. John Donne’s Death Be Not Proud; Emily Dickinson’s Because I Could Not Stop for Death; Dylan Thomas’s And Death shall have no Dominion (and his invitation to “Rage, rage against the dying of the light”); First World War poet Wilfred Owen’s gloomy poems of dying young soldiers on the battlefield.
I quit chemo. The frosty oncologist refused to take my calls to discuss my decision to stop being poisoned
I felt ridiculously sorry for myself, perplexed that something like this would happen to me. I had long whiny talks with God: Why me? I’m a good person…
I told everyone who would listen, including myself, that I was not afraid of dying; that I was afraid of being sick and debilitated. I was afraid of being weak and helpless, of having to depend on other people. All my fears emerged from the locked trunk where I store them in the deep recesses of my brain and began to taunt me; I was under attack from my cracked psyche.
My body was out to get me, trying to kill me.
The breast cancer clinic I was registered with to see me through my treatment insisted that I see a cancer therapist to help me through this difficult time. Your fears are irrational. She said this kindly. She meant well. But, everyone knows that makes not one bit of difference when you’re afraid. Irrational fears are as debilitating as rational ones.
Cold, arrogant oncologist
And so began a year of anguish. Losing both my breasts was less traumatic than I’d thought it would be. Chemotherapy was more awful than I could possibly have imagined.
It was then, and is now, the worst thing that ever I have ever had to endure. I hated everything about it: the nausea, the lack of clarity, the lethargy, losing my hair, the excessive bloating from the cortisone — so much so that I looked like a large, tethered balloon; hairless with eyes and a mouth.
I loathed my oncologist, a cold, arrogant man who made it clear that I was a guinea pig he was experimenting on, poisoning me just enough, he said, to keep me alive.
A Samuel Beckett refrain (from his 1953 novel The Unnamable) looped through my brain: I can’t go on I’ll go on.
In the end, I made a decision I would have made had I not been rushed or hurried along by those selling me surgery and treatment because they were “trying to save my life” (which they honestly believed they were, so I hold no grudges).
I quit chemo. The frosty oncologist refused to take my calls to discuss my decision to stop being poisoned. It was a poignant “washing his hands of me” moment that felt rather like Pontius Pilate refusing to condemn Jesus to death by literally washing his hands in front of a baying crowd.
I felt guilted. Guilty by death-decision.
If I had known then what I know now, I would have opted for a less invasive lumpectomy and foregone the chemotherapy, which has left me with impaired hearing in my left ear, weakened purchase in my right foot, and a foggy brain that lacks the glorious pre-chemo clarity and ability to focus.
As I said, this is always a hard week for me, wracked, as it is, with remorse and regret — and (I’ve just realised) more than a little residual anger.
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