Mr Iain Banks and the Nocebo
A week ago, the novelist Iain Banks announced he had terminal cancer and was not expected to live beyond a year. The doctors are the experts and this is their expert opinion. Mr Banks has no doubt it is true and has accepted his fate with commendable phlegmatism. And so it is very likely he will fulfil these expectations.
It’s called a nocebo. It’s where the witchdoctor tells the patient they will die in three days, and they go ahead and die in three days. It’s the power of the curse. Nowadays we don’t believe in that sort of thing. Or do we? Iain Banks has been told he will be dead within the year. And he has decided his doctors’ prediction is the truth. He cannot escape his fate. He may try to flee to Samara but death will find him out. My wife, Bernadette, was told she had three months to live. She was told this on January 17th of that year. She died on April 16th. That was a very accurate forecast. Or was it a curse?
My friend Pauline was diagnosed with cancer a few years ago. She died slowly over a period of about 18 months. The interesting thing for me was that she absolutely resisted any attempt on my part to make suggestions. She knew I had been through this experience with Bernadette, that I had done years of research, that I had written books. She knew all that. But this knowledge was out-weighed in the balance against the doctor’s opinion that her case was terminal. She had, quite simply, taken on the narrative of death and the idea that she might survive suddenly became very threatening.
But it doesn’t have to be that way.
Let’s take Ian Clements, a Brighton-based retired lecturer in electrical engineering who is still going strong and is cancer-free. The reason this is interesting is that a few years ago Ian was in a hospice and was expected to die within days or weeks. His bladder cancer had returned aggressively and the doctors had told him there was nothing more they could do for him. But Ian really didn’t want to die. He was not going to quietly take on the mantle of death that the doctors had thrown over him. He insisted on having one more course of chemotherapy, even though only one doctor out of the four he consulted – yes, he kept getting new opinions because the old ones didn’t conform to his desire to live – said it had a remote chance of success (5% was the figure suggested). And it worked. It succeeded in shrinking his tumour. In the meantime Ian set about following diets and taking supplements that he believed would help him. Well, we can argue as to whether it was the chemo or the alternative therapies he still follows that did it but Ian himself has no doubt it is a combination of the two. The chemo bought him some time but it is the regular monitoring of his biochemical status and the changes in his supplement regime to offset any negative trends that has kept him alive. Ian Clements has a powerful will to live. He didn’t buy into the nocebo hex the doctors had put on him.
Then there was – is – Connah Broom. Connah is now eleven years old. Seven years ago, having endured around eight months of chemotherapy, Connah was sent home with eleven tumours in his body and the doctor’s fond expectation that he would die within weeks and months. Today he still has a vestige of cancer left but he is otherwise a physically robust and healthy boy who has a passion for dancing and football. The reason Connah is still alive is that his grandparents said: “Connah is not going to die if we can help it.” That was pretty much it: a positive attitude, an organic diet, filtering all his drinking water, and taking an aloe vera product. Oh, yes. And then there was – and is – the light treatment that they were introduced to in Mexico. This light treatment – called Sono-Photo Dynamic Therapy (SPDT) – has been around a long time but it is not available in this country, not for children anyway. It is ‘unproven’. It is not backed up by the peer reviewed, double blind clinical trials that doctors insist on. It is only offered in remote places – Mexico, China – on an experimental basis.
Why couldn’t the NHS do that?
And if it worked this might help doctors to be weaned off the expensive drug regimes to which they are addicted, despite the lack of proof that they work. Don’t work? You might ask. Surely, science is progressing and year after year things are improving? Well, Iain Chalmers of the British Medical Journal, an authoritative voice if there was one, is on record as saying: “new treatments are as likely to be worse as they are to be better” than the old ones. That’s the word from the medical horse’s mouth.
But to return to the subject of the nocebo, it is clear that there are two paths the cancer patient can take when they are told their cancer is terminal. There is the way of dying and the way of living.
The way of dying, which appears to be the way Iain Banks has chosen, is a perfectly reasonable approach. It involves embracing the fact that we will not be around sometime soon and so we need to get used to that idea and to make the necessary practical and emotional adjustments involved.
The way of living, on the other hand, requires being bolshie and bloody-minded and utterly committed to the task of getting well again. Again this is a perfectly reasonable option. But just as selecting the path of life doesn’t mean that you will succeed in curing yourself, so also choosing the path of dying doesn’t mean that you will succeed in dying. Some people have gone home to die and somehow or other their complete acceptance has resulted in an invisible, unsought-after cure. Bizarre but true.
There are no certainties when it comes to cancer. So when Iain Banks tells us that he will be dead within a year, this is not because of the inevitable and inexorable progress of his cancer alone, it is because he has chosen the narrative of dying and it feels very comfortable to him. And that’s fine for Mr Banks. But it may not be fine for the large numbers of cancer patients who find themselves in the same situation. The loud media noise drowns out the message that there is a path of living that could equally be chosen. Perhaps the media could give some exposure to this possibility. Nuro, a German woman who lives near Brighton and who ‘cured’ her lymphoma (I have put this in inverted commas simply because the word ‘cure’ is such a contentious one – Nuro had cancer at some time in the past but now no longer does – is that a cure?). She did this with a combination of alternative interventions. She thought that she should inform other cancer patients about what she had done and offered her story to a leading national newspaper. They turned it down. It wasn’t ‘proven’. It could have been a fluke. They really didn’t want to know.
Perhaps now someone somewhere in a position of media influence will take the brave step and publish this suggestion that there is a way of life and all you have to do is choose it. And maybe it will work if you are serious enough and do the right combination of things for you (there is no THE right combination that works for everyone to my knowledge – but I know what I would do and have confidence that if cancer comes knocking on my door I will delay my demise and in the meantime I will not suffer the unnecessary pains of chemo and radiation – but that’s my informed choice – what’s yours? Don’t have one? Then read my book. Decide now before you’ve got it.)
A collection of cancer survival stories is available free of charge at www.fightingcancer.com
Jonathan Chamberlain is author of The Cancer Survivor’s Bible www.fightingcancer.com
© Jonathan Chamberlain 2013