‘Oh wait,” the sales assistant says, “that’s a 12, let me find you a size eight.” I’m trying to find a dress to go with this article; the Guardian is sending a photographer to take a picture of me wearing a party dress. This article is celebratory: my book, Take Off Your Party Dress, the one nobody wanted to publish (because, as one of the many publishers who rejected it, put it, “the cancer memoir is a crowded market”) is out this week, and let me just defiantly add, has been busily trading on Amazon, with people pre-ordering the title since last November. It’s a good idea, a nice image, wearing a party dress, only I’m not even sure I possessed such a thing when I was six. I have some really great jackets, a midnight blue and black velvet one, another that is dusty orange studded with glass and pearls, and they tend to get thrown over other stuff should I ever feel like partying. But a party dress? I do not have a party dress.
And now I’m in Hampstead, north London, which I can just about get to in 20 minutes from home. “That one doesn’t look like much on the hanger,” the assistant says, “but it’s great on - wonderful cleavage.” “Oh, cleavage,” I say, “not so much ... I had to have a mastectomy, I need something that helps with that ... “ It’s been three years since I lost my right breast, and my cancer has recurred too often for reconstruction - as it is so delicately called - to even be a consideration any more, but though I sometimes find the unevenness very hard to dress, I still resist the foamy, flabby things they give you to stuff inside a bra after mastectomy. I’d rather go flat.
The sales assistant nods easily; she’s young. Maybe she hasn’t understood, or maybe she takes it in her stride, because there is so much breast cancer around these days. Older women, I’ve noticed, are immediately sad, concerned, the moment you say mastectomy. She pops her head over the door, this young sales assistant: “How are you getting on? Can I see?” she says, interested.
I’ve come to Hampstead, even though Brent Cross shopping centre is closer to where I live. But it is too indoors for my current drugs intake - the fluorescent lights and lack of air will make me vomit. I am not strong these days; I have been spending a lot of time in bed. But I can make it to Hampstead, and I can shop for about an hour before my head and legs start to separate from each other, drift off in opposite directions.
In that detached way (quite possibly brought on by the two tiny, round morphine tablets I take each morning and night to stop the tumours from making my back ache) in which I register everything these days, I note first my slight sense of surprise at what the shop assistant has just said to me - “a size eight” - and then how little pleasure it gives me, and how odd that is, because once I would have thought size eight was great, albeit unattainable. Last of all, I note with some pleasure that I feel genuine anger. I’m glad because I’ve been worried at how muted my feelings have been of late, but here I am, violently angry at a culture that tricked me into thinking thin is good, when I can’t stop myself losing weight these weeks, and I’m struggling to eat enough to stay well. Maybe it’s the Jewish background, maybe it’s actually the truth, but I believe that if I eat, I will be fine.
So, whenever I can, I feed myself - healthy fish and vegetables when they will go down, pancakes and bowls of cornflakes on other days. But tumours consume energy faster than you can feed the beasts, so when the tumours are active you can eat all you like and still lose weight. There’s a word for it: catabolism. Added to the active tumours, there is also the fact that the drugs you take to deal with the cancer have side-effects such as diarrhoea and nausea.
My oncologist says: “Slow down and send someone out to buy you some Complan.” My husband buys everything in bulk these days, as if he’s preparing for nuclear war and that if we have enough provisions we’ll survive. Late at night, when there is too much quiet, he mass-orders DVD boxed sets from Amazon, so they are spilling from our shelves and bedside tables and cupboards. He comes home with 16 boxes of Complan, in shades of peach and sea-green and yellow. The oncologist says to eat Complan because it is easily digestible and high in nutrients. Inside each box of Complan there are four packs of the cereal powder, which you mix with 200mls of boiling water or milk until you have a smooth paste. A smooth, inedible paste, which it does not tell you on the box. I know I’m going to be OK because no way am I eating that stuff. I still need food that tastes good. I still have appetites. But some of the anxiety must be getting to me too, because I also bulk-buy, coming home with three dresses, all of which I am unlikely to wear in the photograph.
Actually, no, I think I have decided. Not the plain blue, with the swirly skirt like something Grace Kelly would have worn to swan around Monaco; not the deep maroon, even though that’s the best colour on me, but the cream one with the pattern composed of leaves and birds. This will work. The pattern will disguise the unevenness, my lopsided front.
What interests me - and also frightens me - is the way patterns repeat themselves. So here I am, 44 years old, and I don’t feel anything like my own mother. I feel as if my life has been quite different from hers in many ways, but here I am, the age I remember her being when I came home from school, and I’m lying in bed in the afternoons, with packets of opened pills on the bedside table next to me. I remember my mother doing this, too, that she was often in bed in the afternoons, and I think that there were pills in her bedside cabinet, though not openly, not spread out on the top among the pens and Neal’s Yard remedies and mobile phone and piles of books, as mine are. There is an opened can of Canada Dry Ginger Ale on my bedside table, however, which is something else I share with my mother. I drink it for the nausea - ginger helps - but I think she just liked the taste.
I think that when my mother was my age, she was part of a generation of women to whom doctors readily prescribed tablets. After all, I was at university with thalidomide children; I was conscious of having missed that catastrophe by only a year or two. And so what I wonder - even as I wonder at that oddity, how patterns repeat themselves in completely different situations - is whether in this age of cancer, doctors are once again experimenting on women.
I am on my third trial drug. I started having three-weekly intravenous doses of Herceptin in the middle of 2005 - just before the news about Herceptin and women campaigning for the drug on the NHS became headline stuff in the media - and I had my last injection of Herceptin, for now anyhow, a couple of months ago, some 30 plus pints of the stuff in all.
My cancer recurred twice while I was on Herceptin, so the doctors added in another intravenous drug called Omnitarg, available only as part of a trial. When Omnitarg stopped working, within a matter of months, the doctors switched me on to capecitabine, a standard chemotherapy drug, but one which they hoped would fuse with Herceptin to stop the cancer. Synergy is the buzz word of cancer doctors in the early years of this century: if one drug won’t stop the cancer cells, perhaps a combination of two will. In my case, once again, after five rounds of capecitabine plus Herceptin, the cancer grew and spread, finding new bits of my body in which to lodge.
This month I started this year’s magic bullet: lapatinib, more commonly called Tykerb. The drugs are definitely getting prettier. Herceptin was a see-through fluid, ditto Omnitarg. Capecitabine comes as both big and little, pale pink tablets, a non-descript sort of colour, neither soothing nor interesting. Tykerb, though, is vibrant, flaming orange, and seems to come in one standard, too-large-not-to-notice-it-going- down size. It’s the kind of acid orange the fashion pages are trumpeting this summer, and to start with I thought that’s a nice, vivid, cheerful colour. Now it just makes me sick every time I pour the regulation five pills out on my kitchen table, to be taken one hour before breakfast.
When I meet women these days I see them as drugs - this one a pale pink, that one a fiery orange. At Jewish Book Week recently I chaired a panel of feminists, and I thought, “You are pink, aspiring to orange; you are transparent, and you are the finer-sized pink one.” I’m swallowing the drugs and they’re permeating me.
“Are you experimenting on me?’ I ask my oncologist, in a deadened but still somewhat aggressive tone. My oncologist is a Dr Peter Ostler. After three years of being treated by him, and writing about him, I finally ask formal permission to interview him - for this piece, in fact. Because I am for once speaking to him on the record, I ask him how old he is and assorted other background information. He is 41 and became a consultant when he was 32, which other doctors tell me is extremely young to be so qualified. Ostler says modestly that it’s because he didn’t do a PhD, didn’t pause to do research before marching straight into clinical practice. He is the clinical director of cancer services at Mount Vernon cancer hospital in Hertfordshire, but he himself specialises in breast, urology, lung and sarcoma cancers.
“So are you experimenting on my generation of women?” I say. I’m angry because I really don’t want to be this ill, don’t want to be lying in bed in the afternoons. This odd thing happens when I get up around 3.30pm to head off to school to pick up my son. It’ll be a sunny day, I’ll have my music playing in my earphones just like always, and everything feels almost normal, but then I’ll see other women coming out of other schools, their offspring already in tow, and suddenly I feel an emotion I can’t remember ever having before. Not at school, when I was never the popular one, or later, when I was never the one with the boyfriend, or even at work, when others walked into “my dream job”. The new sensation is acute, and it penetrates the music. I feel that I must bow my head, because it must be visible on my face, a yearning that can be read. “Lord,” I say to myself, “it’s jealousy.” I’m jealous of other women now, all the ones who don’t have cancer.
Angry, too. So angry and increasingly so cynical about these doctors in whom, at the same time, I have to put complete trust. “What draws you to this field?” I ask harshly. “Don’t you find it depressing?” It’s because it’s “real medicine”, my friend who is a GP tells me. It’s the only field with real illness, and the advances that are being made give the possibility of a real cure. I can see the intense interest on Ostler’s face the first time he examines me after I finish one round of Tykerb. The lesions on my chest, where the breast cancer spread to my chest wall, those red marks have practically vanished, and the skin is almost smooth again. “Do you see that?” Ostler says with some wonder, and as if I wouldn’t have looked each and every day myself. “God save us all,” my atheist GP friend says one lunchtime when we are lying on the grass trying to remember a time before cancer sliced into both our lives, “from being of interest to the medical profession.”
“No,” Ostler answers, steadily. “I don’t feel that putting women into cancer trials is experimenting on them. Before I agree to enter patients into any kind of trial I have to have that equipoise that the trial will benefit my patients. There have been things I haven’t signed up for because I think it won’t be easy for my patients - where I think the likely outcome is not worth the effort involved.”
Does he think cancer is on the increase? He says he isn’t sure, though he has a feeling he is seeing more younger women. “Younger women have more aggressive cancers,” he says, “so we do see them more often.”
Really, as Richard Ford says in his latest novel, The Lay of the Land, giving his character Bascombe a sentiment that Aaron Sorkin also scripts for the mouth of Bartlet, president of the United States in his TV series, the West Wing: “It’s cancer, and the truth about cancer is nobody really knows anything.”
Which is sort of exactly where I am now. I’m on the latest, whizziest drug for women with Her2 cancer (the most aggressive kind) that has proved resistant to Herceptin; namely, that continues to recur despite the quantity and quality of drugs chucked at it. I take five Tykerb pills every day, and two weeks out of three I add in eight daily tablets of capecitabine. I also take two morphine pills and a diclofenac every morning and evening. I don’t have any drugs intravenously at the moment. I don’t pay for these drugs, they are provided by GlaxoSmithKline, whose scientists developed Tykerb. The drugs cost $2,900 a round, I believe, but while they are still only available on trial, the drugs companies pay the bills.
Herceptin attacks the her2 molecule (a protein on the cancerous cells) from the outside; Tykerb appears to affect Her2 from the inside. This much is known. As for the rest. I have cancer which keeps on recurring. Nobody can tell me why: I did the genetic screening, and I don’t, apparently, carry the faulty genes. I had my children young and breastfed them for ever. I was never a size eight, but I was always a healthy weight, and the children have always laughed at how easy it is to take my money when food is labelled “organic”. I have it, is all I know, like far too many young women of my generation, and I just don’t want it.
Take Off Your Party Dress: When Life’s Too Busy for Breast Cancer by Dina Rabinovitch is published by Pocket Books. To order a copy for £7.99 with free p&p, please call the Guardian book service on 0870 836 0875 or go to theguardian.com/bookshop.
