There is no template for the way I am living now. There has always been a plethora of instructions before, too many to choose from, really: I could veer from Gina Ford to Sheila Kitzinger for the labours and the babies, or pad the middle road with Penelope Leach; range from Delia Smith to Nigel Slater for the suppers. No matter what the life change, these days there’s a how-to book, a lifestyle column in a Sunday magazine; none of that mid-century fumbling in the dark like Ian McEwan’s honeymooners on Chesil Beach. Except for right here, at the front line of breast cancer. Nobody has written the manual yet. The drugs are too new, their side-effects not yet documented and, most importantly, their efficacy not wholly determined.
Also - and those among us who are not Philip Roth can hardly be surprised - there is a reluctance to examine premature, encroaching death. I check out the depressingly regular obituaries, the ages always similar - 46, 41, 48, leaving behind a son, a daughter, two children, maybe three. But these quite long pieces, sometimes more than 1,000 words, are careful to emphasise the lives and the achievements, what was managed despite the illness, rather than talking about how, actually, one is supposed to live each day with the illness. Often, it will be covered in a line, this time after the diagnosis is “terminal” but before - and maybe long, long before - the term. “Her last five years were hard,” the obituary might say or, perhaps, “For the last 18 months she would often leave the restaurant early, citing fatigue.”
The BBC telephones me - the nightly news show, The World Tonight. Will I go on the programme to debate with Matt O’Connor, the caped-crusader founder of Fathers4Justice? His latest book isn’t a guide book - his organisation does that already, setting out game plans for men who want to fight access deals to their children post-divorce - but an autobiography, the raw father’s personal history as template.
When the softly spoken researcher rings, I’m in bed, as I so often am these days, and when she makes her request it’s not what I might have to say on air that goes through my mind - I know that book inside out, after all, know exactly what I think about post-divorce parenting - but it’s the ins and outs of whether I will physically manage what is involved in doing such a broadcast. And this is what nobody seems able to tell me: what the boundaries of this exhaustion are, how long it will last, what I can manage within its confines.
“Just take each day as it comes,” the doctors say. In our fortysomething world, with kids who need packed lunches and walking to school (on days when I may not be able to get out of bed, my husband might have an 8am meeting, and all the older children have morning exams), not to mention the not yet extinct notion of a career, what exactly does that instruction mean, I ponder? Because, honestly, what works as a guideline for a Buddhist monk doesn’t make tuna sandwiches on days when you can’t face food.
In the end, I stall for time, telling the researcher what I would say on air to O’Connor: that he and I are agreed that the family law courts are badly equipped to handle marital splits; but, unlike him, what I believe is best for children would be one universal solution. Kids don’t need differences in their arrangements from other children in their class, to add to the post-divorce self-consciousness. And that universal arrangement - this is where O’Connor and I are about as far apart as the aforementioned Fords and Kitzingers - should prioritise the irreplaceable bond between mother and child, a deeply physical tie that is different from the more detached - and necessarily so - connection between fathers and children.
While I’m on auto-pilot, running these well-rehearsed - and, in my case, well-lived - arguments by the researcher, in the back of my mind I’m actually concentrating on all the pros and cons of what is involved in enabling me to do a radio interview, what amount of strength I need guaranteed to cover the time, what physical payback there will be afterwards. One thing I have found out in my new, cancer-struck world: if I take one exertion too far, there is always a payback, as sure as laundry follows holidays. I will not manage to talk about divorce with O’Connor, I tell the nice girl from the BBC finally, cannot be sure I’ll be able to sit up long enough to do a microphone interview even. You see, I tell her, I have breast cancer, and while we are debating how much time post-divorce children should spend with each parent, there is something else going on in our society that is getting attention certainly, but not enough.
For all the purple paint in all the country chucked at all the major state institutions across our land could not highlight enough the effects of this transformation in our time. Mothers are being targeted by an illness, for the first time in our history, and families are losing their linchpins. We’ve had war, we’ve had plagues, but never before have we had an illness that has killed off the mothers. It’s October, which means breast cancer awareness month, and all about us there is pink to counter the autumnal reds and oranges. Pink ribbons wrapped round buildings, all manner of pink things to buy at tills - including my own bete noire, the tight-fitting T-shirts that are the antithesis of what is comfortable post-mastectomy - why, the very petrol pumps are turning pink.
My book, Take Off Your Party Dress, about having this cancer, is on sale - chicly - among the lingerie in 300 branches of Marks & Spencer this crusading month. But the campaigning, hustling, fund-raising pink of breast cancer charities brings in its wake the usual complaints that breast cancer hogs the charity limelight. Only I don’t agree. I don’t think we are aware enough yet. Mothers are dying before their children grow up. Western mothers, in the affluent cultures, where everybody else is living longer than ever before. It matters most because mothers dying reverberates down the generations, the loss of that nurturing a transforming factor. When I was growing up, the mothers weren’t dying.
Another lesson I have, too late, taken on board: we will need childcare in our house. Breast cancer, a six-year-old - even with copious older siblings - and no back-up just doesn’t work. “I’m not having one of those nanny people,” my six-year-old says firmly, as he listens in on a stream of eastern Europeans flocking to answer my ad (I put an hourly rate way over the market standard, thinking I want, at least, top-notch childcare). I say they play games, and will race him to school on his scooter in the mornings. “Not in my lifetime,” he replies calmly.
It is, maybe, a shift too far, though of course he will get used to it. But he has adjusted so much already.
I spent one of the long summer nights in death’s anteroom. Because I am young - 44 feels young to me, too young to die - or perhaps because I haven’t had much to do with dying, I compare it with the things I know. What it felt like most of all was that moment towards the end of labour, but still with hours to go, when you utterly reject any lingering notions of natural childbirth and you are yelling for the epidural. In this case it’s morphine. Something to take away the physical pain, to relieve the fear. And the exhaustion of cancer, the feeling that there is no reprieve. That long summer night, I didn’t think the pain would ever be under control again. I was weak in a way I had never imagined being weak, unable to make it up one flight of stairs. I would fall during the few steps from the loo back to my bed. I lay in bed in the daytimes and heard the life of the house go on around me. But I came out of that night and the cancer is once again under control: on a mixture of Navelbine, an intravenous chemotherapy and tablets I take daily, called Tykerb.
Tykerb is the newest treatment for breast cancer and, deeply ironically, it’s a British invention, made by GlaxoSmithKline. The plastic bottle stuffed with orange pills next to my bed tells me these tablets were made for me in Ireland. But in England, Tykerb is not yet licensed, and unless you can join a trial you have to find another way to obtain the medicine. In my case, my oncologist liaised with an Israeli oncologist, who prescribed the drug for me (it is available in Israel, the US and Switzerland, among other places). My stepson took the prescription to an Israeli pharmacist who dispensed the pills over the counter and dataposted them to England.
But while the cancer is controlled once again, the shifts in how we live are inexorable. My son will trek upstairs clutching board games now, will climb on to my bed to play games with me, and sometimes he asks: “Will your breast cancer ever get better?” But not that often, really, any more. He still says he wants me to take him to school, but he understands that I am unwell in the mornings. He doesn’t automatically call mum any more, he calls for dad. There is a new bedtime routine - backgammon with dad, instead of a story with mum. And these shifts have happened without trauma, without, as I describe to friends, a bleaching-out of the children’s faces.”They don’t have that white look,” I tell people who ask. “They’re fine with it all.”
Perhaps these are just such small adjustments, yet to me in my bed - hearing it happen around me but without me - it seems huge.
18 March 2021: this article has been edited to remove some personal information.
