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(This piece originally appeared in The Guardian on Friday 27th April, 2012)
I was shuffling round the ward clinging to the arm of my nurse one Sunday, this winter, wondering how many more steps I had to take before I could be helped, exhausted, back into bed, when the nurse paused.
“Can I ask you a question?” she said. “What are you in here for?”
“A bilateral mastectomy with DIEP flap reconstruction,” I replied.
“Oh,” she said. “I thought you’d just had a tummy tuck.”
But no, I was diagnosed with breast cancer on 5 January. Ductal Carcinoma In Situ, or DCIS as it’s known, is the fastest growing form of breast cancer today, thanks to new developments in mammography. But at Stage 0, level 1, it’s also the smallest, earliest form. (This is a cancer that, until recently, was known as “pre-cancer”.)
I had literally a few non-invasive atypical cells in one breast. It was what my radiologist described as “breast threatening, not life threatening”. Of such cases, 50% never grow into anything; and when it does, it grows so slowly that, in the UK, women over 70 years old are advised not to seek treatment for it.
For women in the US, there are two ways of treating DCIS: lumpectomy with radiation, if the cells are in one spot; mastectomy if they are present in more than one quadrant. My cells were scattered all over the place. I had no choice. Mastectomy was presented as my only option.
So, four weeks after the diagnosis, I was on an operating table in Mount Sinai Hospital in New York, undergoing a 12-hour surgery that involved three attending surgeons (one oncologist, two plastic) working simultaneously on my body, as they removed all my breast tissue (surgeon 1) and then, with an incision that runs from hip to hip, took out my stomach fat (surgeon 2) and placed it where my breasts had previously been (surgeon 3). The operation is risky enough – the veins and arteries from my stomach had to be reconnected to those in my breasts so that the flesh would live – that I was required to spend two days in the ICU.
Before the operation, I had donated two pints of blood to myself in case I needed transfusions. I used both. I spent a week in hospital covered in bandages, enduring overwhelming nausea – a common side-effect of both breast surgery and anesthesia.
It was brutal. The first email I sent to my friends afterwards said:
“It feels like when u lie down in the road and a great big articulated lorry drives down the middle of yr body. Plus the meds make u vom.”
Five days after surgery, I was pronounced completely cured. I didn’t need chemotherapy or radiation. I will never have to have another mammogram, ultrasound or biopsy. My cancer doctor was done with me. I haven’t seen her since she came to my room to give me the all clear.
My cancer lasted 40 days. The relief … I can’t describe.
Now, instead of chemo, I spend my time in the offices and exam rooms of the plastic surgeons as they handle my recovery. It is so confusing. What was that all about? Cancer? Really? But it was so tiny. Why was the operation so huge? Why has my body been what my plastic surgeon likes to call “completely remodeled”, at a cost of $250,000 to my insurance company, just because of what my radiologist described as “a handful of atypical cells”?
My nurse wasn’t so far off the mark. The stomach incision, and the removal of fat that had accompanied my mastectomy are the same procedures involved in a tummy tuck. At one point, when we were scheduling the operation, my plastic surgeon slipped up and said I was having “elective surgery”.
“It’s not elective,” I said quickly.
“No, of course not,” she corrected herself.
But I can see how she got muddled. Her clinic offers “mommy makeovers” for women with saggy breasts and droopy stomachs following childbirth – in other words, women like me.
The irony is, I would never, ever, have considered changing my body for cosmetic reasons. I have two daughters who look like me. If I want to see a younger, thinner, version of myself I look at them. This is a world I have spurned. It hasn’t been easy to spend the past two months immersed in it.
But then, none of it has been easy. I’ve been on anti-anxiety medication since I heard the word “biopsy”. I might look slim and healthy in my clothes; without them, I look horrific. I’m covered in scars, bruised, lumpy, swollen and misshapen. This is my body? I have to steel myself to look at it, and I haven’t been able to let my family see it yet. My breasts are completely numb and will be forever. The nerve endings were removed with the tissue.
Eventually, I’ll be a cancer-free uplifted 34B, rather than a collapsing 34D, my stomach as tight as a drum. “You’re so thin,” my friends comment, many of them with envy. Envy.
For a moment, I considered having no reconstruction at all – even though my doctors never suggested it. What would it be like to be completely flat-chested and never need a bra? Liberating? But the photos and the accounts on the internet were unappealing – particularly to someone of my shape. I’d be out of whack with no breasts or nipples but ample hips.
More of a decision was whether or not to have reconstruction with implants, and I thought about this option for several days before deciding against it – for three reasons: implants are riskier over time, need replacing and look like, well, implants; and I liked the idea of using my own flesh, there was something sensible about it; and once the scars and swelling are gone, I’ll feel like I’m still me.
Recovery has been full of setbacks. The nausea keeps returning, occasionally developing into vertigo. Both breasts filled with fluid a month after surgery, causing me wrap my torso tightly in Ace bandages for two weeks while I went for regular visits to a doctor holding a horse-sized syringe for drainage. Eventually, I had to have a drain reinserted to deal with it, just when I thought life was getting back to normal.
Then, last week, I inexplicably developed an acute and painful infection in my left breast that wouldn’t go away. It was finally too much to handle. That morning, as the doctor looked at it, I started crying and couldn’t stop.
“It’s just too much,” I tried to explain, through my tears.
“But it’s not cancer,” she said briskly.
My goal all along has been to put this experience behind me as fast as possible before carrying on with life as normal. The cost is insane, the trauma has been considerable. I wish both had been less. But given my options, I am comfortable with my choice. I wish there had been another option, though. I wish there was a way of eliminating these cells without taking out so much of my body. I wonder how long it’ll be till that option exists?