Claire Rayner: How I coped with breast cancer
When Claire Rayner discovered she had cancer, she felt morally obliged to go public. Here she reveals the grim reality behind diagnosis and a double mastectomy, and the unexpected joys
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Your support makes all the difference.The past six weeks have been extraordinary for me. Right now, I feel well, I'm told I look well and I'm happy as Larry – not what you'd expect perhaps just six weeks after having both breasts removed.
Well before I was diagnosed with breast cancer, I knew I'd taken a gamble. I was a prime candidate; I'm big, I had thyroid disease when I was young and I wasn't able to breast feed my first child, Amanda, because she was premature. Then, out of perhaps a misguided sense of wanting to treat all my children the same, I didn't feed her two brothers either.
At 50, I went on hormone replacement therapy (HRT) because I was having very unpleasant flushes and rushes of adrenaline. There's a slightly increased risk of breast cancer with HRT, though a reduced risk of heart attack and stroke, and I thought I'd rather not have a heart attack and I'd certainly not like a stroke, but I'd take a chance on breast cancer because it's much more treatable now.
You meet your body again on holiday getting in and out of swimsuits, and in April we went to Cyprus where I discovered a thickening in my left breast. I thought it was just my boobs going southwards as I got older but it was enough of a change for me to go to my GP when I got back. She referred me to a consultant.
I wanted to see someone at Bart's because I'm an associate non-executive director there. Every NHS patient who goes to Bart's with a query lump gets an immediate examination, a needle biopsy if necessary, a mammogram and ultrasound.
When I saw the ultrasound I thought "I bet there's something there", but even so I still wasn't that concerned. I was sure I was one of the lucky 90 per cent for whom the lump or thickening is benign. So it came as bad news when my consultant came back and said "I'm afraid you've got breast cancer". I think I said "oh bugger!"... and after that had a bit of a cry. My consultant is a wonderful, good, tactile man who gave me a huge hug and said "don't worry – we'll get you through this". I said "you'd better or I'll have your guts for garters."
I was due back for a liver and bone scan the following week, and that weekend was rough. I got really spooked on the Sunday and rang a close friend who is also a consultant at Bart's who assured me I'd get the results as soon as possible.
The scan itself was a long, drawn-out and pretty grim business because I knew if I had secondaries I wouldn't do terribly well. But then I was told it was clear, clear, clear and I was as high as a kite.
I had decided I wanted the whole breast off, not just a lumpectomy but then two days before I was due to be admitted into hospital I rang my consultant and said "I've been thinking and I'd like you to take the other breast as well." I was quite a busty wench and I knew from the bone scan that I had some bulging discs and having one heavy breast on one side and a prosthesis on the other can disarrange your back. Also, I knew I'd have no peace of mind as long as I still had the other breast.
I was also worried about a condition called lymphedema which can occur when the lymph nodes under the arm are removed. It's a procedure to prevent the cancer spreading but the trouble is that when you take all the lymph nodes out you're also destroying the drainage system and that can make the arm very swollen and uncomfortable.
Luckily, my consultant told me there was a new system they were trying in which they identify and remove the sentinel node plus the immediate ones around it, while leaving enough to continue draining. I decided to opt for that treatment. The risk I was taking was that they'd find the sentinel lymph node was affected with cancer and I'd have to have another operation to remove the rest.
I was absolutely euphoric when I was told on the Tuesday after surgery that the lymph nodes were clear. Also tests on my other breasts revealed that although there was no growth there were early changes in some cells to indicate that it was high risk. It is now five weeks since I've had my bilateral mastectomy. I've needed no radiotherapy or chemotherapy, though I'm on tamoxifen now, and I've got about as good a prognosis as you could have.
Now I have two very neat lambswool falsies. I rather like them. Everyone thinks I should be grieving over my lost breasts, but I've had them 60 years and they're not the pretty things they once were. If I was younger, of course, it would be different but I'm a fairly grown-up person and what I value about myself is from the neck up rather than the neck down.
Damn it, I'm 70: I've had them a long time. Des and I celebrated our 44th wedding anniversary last weekend and I knew he wouldn't be heart-broken. It's like old friends: you miss them but it's not the end of the world. There have been some faint regrets. On a lovely day when I'm driving along beside Des and all the girls are out in their little skimpy sweaters and their boobs are bouncing along... I've thought "ahh..." But I'm not grieving over the loss of my breasts, I'm grieving for the years that have gone by so dreadfully quickly.
Occasionally, I've been tearful but that's a post-operative anaesthetic effect. It takes very little to reduce me to tears. It made me cry receiving all the flowers and so many wonderful letters and cards – 300 in all. One lady wrote saying she'd meant to write in the late Eighties when I managed to get bare boobs on to TV-am, showing women how to examine themselves. She said she'd found a lump, that she did have cancer and it was treated, and she's never looked back. "I meant to say thank you then but I'm saying it now," she wrote. That was a real choker.
I only got one disconcerting reaction when someone I didn't know terribly well phoned me up four days post-op to say "what does it feel like to have no breasts?" I think my answer was "interesting" – that's a useful word; it covers everything.
I've coped because I'm terribly phlegmatic. The first 15 years of my life were pretty grotty. Many people my age were evacuees and city families were splintered and exploded. Some families such as ours never managed to reform as a unit. But once I'd escaped from the awfulness of my childhood, I had nowhere to go but up, and so up I went like a cork. I married someone who is my best friend as well as my lover, and we're both still just as potty about each other as we ever were. He's very good news is Des.
My offspring have been wonderful too. They are some people, that half dozen – and I say half dozen because their spouses are as good as they are. My daughter is obviously a little concerned now because there may be a genetic link. I had an aunt who died of breast cancer in her 40s who I loved to bits, and to the best of my knowledge my mother had both breasts off before she died of ovarian cancer in her 70s. Then one of my sisters died of breast cancer about 10 years ago. I'll soon be having a genetic test so that my daughter and my other sister can check. All of these are great steps forward, and all available on the NHS.
I did have the surgery in a private hospital. I feel very ambivalent about having had part of my medical care in the private sector but I did it only because I wanted to have a room on my own. I didn't do it because I thought that the care was better or even to jump the queue – though inevitably it has that effect.
And, yes, I do feel angry, ashamed and guilty that some of the care that I had simply isn't available to all other women.
But I hate the way some people have picked this fact up and given it a negative twist by turning it into criticism of the NHS. This drip, drip, drip of criticism that comes from certain areas of the tabloid press and goes straight back into the NHS is desperately destructive and desperately unjustified. Of course there are problems, but the successes far outweigh the failures.
There was always a risk of certain papers finding something negative to say. I went public about my breast cancer for three reasons. First, it was going to get out anyway and I'd rather try to control it. Second, I was diagnosed on the day the general election was announced and I was just gearing myself up to write articles and beat the drum about a Mori poll I'd set up to find out what people's voting intentions were when it came to care of the elderly. The results were spectacular; 43 per cent were prepared to change their vote on the issue. The News of the World said that if I'd give it the story of my own disease then it would campaign for the elderly for the next three weeks. I said it's a deal. I'm grateful that the cancer turned into a staircase that got me to the top of the highest soapbox in the world because whatever you may think of the "News of the Screws" it has a huge readership, and in that context it's powerful.
The third reason I went public was I've been a life-long health educator, and it seemed quite wrong to keep my own breast cancer secret when I'd been telling people for years that it's only another disease, let's talk about it. It bothers me that we've developed a culture that denies mortality. Death is inevitable but we will wriggle and wriggle and wriggle. I don't want anyone to struggle to keep me alive if I'm 75 and very ill. That's why Des and I have written living wills, and I've made it quite clear that if I have a terminal illness I don't want heroic treatment. I share Woody Allen's feeling: I'm not scared of being dead, I just don't want to be there when it happens.
The tyranny of positive thinking also bothers me. People will use this terrible language about being strong, and fighting cancer and making good things happen by visualising the growth. But you don't tell someone with a broken leg to visualise the bone healing. We all have a certain amount of control over our thinking patterns, and it's well worth thinking intelligently and positively about what's happened to you but don't get swept away on a tide of mumbo jumbo. To get over cancer you need good doctors, good nurses, good food, plenty of rest, the right sort of exercise and lots of people to love you. I'm lucky because I've had the lot.
Claire Rayner was talking to Marina Cantacuzino
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