Seventy-five thousand and eighty-five pounds, and fourteen pence. One month after my second operation - three more bits of cancer surgically excised from my body - and I’m doing a very un-British thing at my kitchen table. I’m adding up the cost of my treatment to date, while the nurse gives me intravenous Herceptin.
The £75,085.14 running total is, coincidentally, exactly 10 times (less the £85.14) the advance royalty I’m receiving for my book about having breast cancer. So, my life is worth 10 times more than my thoughts on my life. Chasteningly, that is a gap that is getting ever wider; the royalty is fixed but I’m still having treatments, and/or diagnostic scans of one sort or another most weeks.
Though I’ve lived in London on and off since I was nine, I was born in Charleston, South Carolina, and I can tell it’s my American roots showing today because of the look on Matt’s face, which is just slightly wide-eyed at what I am doing in public, so to speak. Matt is the Healthcare at Home Herceptin nurse. He has to find a vein running up my arm that will take the needle, which is a tense business.
Normally, it’s an anxious moment for both of us, attempting light chat so as to take my mind off the matter in, quite literally, my hand. But today, while Matt, a ruddy fellow, is white with the effort of not jabbing me too often before hitting the vein that will work, I am blithe. It’s engrossing finding out how much things cost, and this Herceptin dose is a perfect time to be doing it. Increasingly, as the months go by, I need harder-core diversions to distract from what’s happening to my body; like, for example, while stitches are being removed from what used to be my right breast, wondering how these doctors are when they confront their partners’ breasts in bed. Money is hard-core in British society. I know this because I am always asking the children’s authors I interview what their advance and royalty deals are: Americans tell me as readily as the British look horrified by the question. (With just one exception: Frank Cottrell Boyce, a Liverpudlian, who readily said, “£150,000 for the first two books, then £250,000 for the forthcoming two.” A hit screenwriter - Hilary and Jackie, A Cock and Bull Story - he tells me he often made no money from movies at all.)
Ever since being diagnosed with this illness I’ve kept a flimsy yellow paper folder stuffed into the bookshelf next to my desk. Each time one of the insurance slips comes through, with the printed words “payments direct to the hospital or specialist” (in bold) and the actual amounts (in normal font) listed beneath, I chuck the slip in the folder. The yellow folder, which seemed perfectly fine for the job when this all began, is of course fit to burst by now, like a Texan on fast food. Today, I’m adding all the amounts, out loud, because I had an English state-school maths education and so understand numbers simply as slippery things that need firm handling: two calculators and very clear enunciation of the amounts as I go. From Matt’s air I’d say he finds the proceedings both interesting and mildly transgressive.
“Huh, Dr Ostler, £380 every time he opens his mouth [and worth it, as I’ve written before]; £3,165.48 - so that’s what a mastectomy costs these days. Which bit’s the 48p, do you suppose? Ah yes, here come the £2,018 amounts, that’s the Taxotere, and, oh yes, wow, here we go, this must be you chaps, Healthcare at Home, uh, £3,019.88 ... hmm.” To all of which Matt listens with what I consider to be a particularly English expression on his face, composed of one-ear-cocked beady interest combined with a slight manner of humouring naughty children in the nursery. He resolves this inner conflict by joining in full frontally: “The odd pennies are the VAT amounts added in,” he explains. And, “Doctors have to pay for their licences - very expensive, more than us nurses.”
This is due to be one of my last Herceptin treatments. The question is, what’s next? Do I just sit around and wait for the cancer to rear again, or do the doctors have any tricks left?
That’s the long-term discussion anyhow. The short-term one is rather more urgent: will my skin ever heal from this second bout of surgery, or am I going to need a skin graft? So far it’s not looking good. Because Mr al-Dubaisi had to operate on the area where I had a mastectomy, and because that area was treated by radiotherapy, the skin there is already damaged from radiation and therefore less inclined to heal.
The first time they try to remove the stitches the entire wound pops open again, and the gentle nurse is soon setting up a mini-operating table for Al-Dubaisi to restitch the area. Always ready with the obvious question, I ask, “Is this going to hurt?” “No, no,” Al-Dubaisi says, “I will give you a local anaesthetic. The only bit which will hurt will be that needle giving the local.” “I’m absolutely happy to have a general anaesthetic,” I say. Everybody seems busy, and nobody answers, so I repeat it. “I don’t think we have time for that,” Al-Dubaisi says.
Then he washes the area out with iodine, and I am screeching: “Ow, ow, ow.” He looks almost as unhappy as I feel, but says quietly that he has to make sure the area is disinfected, that’s his main concern. He dilutes the iodine with water though, which is better.
When it comes to doing the stitching, he says with some feeling, “Dina, can you please turn your head the other way?” and you realise it’s not just hard on the patient when procedures have to be done under local rather than general anaesthetic.
The stitches have already been in for 13 days but he decides he’ll leave them in for several more weeks. I’m assuming I will need a skin graft because a friend in the same situation said that’s what happened to her, but that, it turns out, is to underestimate the determination and skill of Al-Dubaisi.
Meanwhile further radiotherapy has been mooted but then rejected, because I’ve had the maximum radiation to the area, so more is an impossibility or the skin will go “necrotic”.
Maybe it’s the effect of having an open wound, or maybe it’s just cancer the second time round, but I feel as if I need a bracing dose of iodine swilling round my thought processes these days too. I feel more panicky than before and also more susceptible to the people who write saying - change your diet, change your mindset. It leads to sleepless nights. I’d like to wash away all the conflicting information: the baseless advice on diet, in particular.
Well, my doctors tell me it’s baseless: I’ve asked Katherine Pigott, consultant radiotherapist at the Royal Free, Peter Ostler, the oncologist at Mount Vernon, a specialist cancer hospital, and Al-Dubaisi. But diet advice proliferates in the popular press and in my mind there’s a quinoa grain of doubt: my son’s three goldfish revived completely after their brush with death after we adopted the simple measure of drastically reducing their food intake.
I find myself obsessively checking the Nottingham Prognostic Index, a calculating tool by which you multiply the grade of your tumour by 0.2 and add the stage of your cancer, or some such formula of little meaning to the state-school mathematically challenged among us, and then you can find out whether your chemotherapy is going to work or not. Or something.
I say to Ostler two completely contradictory things. First, “What is the point of my carrying on with the Herceptin? Obviously it hasn’t worked.” “No, you’ve got that wrong,” he says, first annoyed, then quickly correcting and moderating his tone. “To us,” he says, “the good thing is that your cancer hasn’t spread. It’s remained local.” I stare at him, bleary-eyed, tired from my nights up with a calculator and the NPI, attempting to take control of my treatment, as all the best correspondents tell me to do. And then I say, “So why stop at 18 doses? Why don’t I take it for two years, or three years? Or for ever?”
“The evidence base isn’t there,” he says.
Do you feel all right? This is the question the doctors ask me every time they see me now. “I don’t know,” I say, mulish. “You tell me how I am.” My instincts are necrotised, I want independent confirmation of everything. “Look, any problems at all, don’t feel you are bothering us,” both Ostler and Al-Dubaisi say, repeatedly, “just come for a check-up.”
The operation was successful, in that Al-Dubaisi removed the tumorous sites he could see. But from the cancer cells they removed they can tell that there is evidence of what they call “activity” in the blood cells. So, really, it’s anybody’s guess what’s going on in my body.
In fact, the reassurance I’m after is daily scans; no sooner does that cross my mind than I simultaneously dismiss it as a ridiculous request - of course, no way can I ask for that, I don’t even tell anybody that’s what I’m thinking. My husband Anthony, though, successful in this town and privately educated - and so with a completely different sense of what’s owing to him - puts the very question. “Surely Dina should be scanned every week,” he says to Al-Dubaisi one time when I am not in the room. “To find out what?” Al-Dubaisi says. “Whether the cancer has spread,” he answers. “What is the point of knowing that?” the surgeon replies.
All my life, as a journalist, I’ve resisted the notion that there are any questions at all that are better left unanswered, or indeed unasked. My report cards from secondary school used to say, “Dina asks too many questions. She is attention-seeking, and a distraction to her fellow students.” But now I find myself policing my own mind, telling myself to stop asking stuff. My mind, at least, I can aspire to controlling.
Take Off Your Party Dress, Dina Rabinovitch’s book on living with breast cancer, will be published by Simon & Schuster next spring.
18 March 2021: this article has been edited to remove some personal information.
