Stephen Jay Gould died in 2002, a prolific writer of popular science, teacher at Harvard and polymath. He was diagnosed with abdominal mesothelioma some 20 years before and was told the median survival was eight months.
Anybody diagnosed with such a disease should read his essay The Median Isn’t the Message, for it brings some sense of hope into an otherwise depressing world.
I was diagnosed with pulmonary mesothelioma three weeks ago. Having a phobia of lung cancer, well placed, as it now seems, and the presence of flu-like symptoms I consulted a colleague and he organized a chest x-ray. Just two weeks before this I had been skiing in the French Alps.
Mesothelioma – me? Aside from the traditional sense of being invincible, common among healthcare workers, this diagnosis has come from way out in left field. I am a 48-year-old doctor, not the traditional dockworker or lager no disrespect to those patient groups intended.
Asbestos – from where? It seems that there may have been a lot of asbestos in the tunnels at Guy’s hospital where I spent six years training. One wonders how many of my contemporaries will get the same disease? Everybody – students, nurses doctors and porters – used the tunnels. Anyway, diagnosis made, biopsy done and I am into treatment.
Spooky that for the past six months or so I have not felt myself and have had difficulty in energizing myself. My wife complained that I seemed to want everything to happen sooner rather than later. I had been unusually upset when she went away for a week on business.
Putting the pieces together, in retrospect, there was probably some effect on my mood from the disease. The mind-body interface goes both ways. A colleague told me of similar problems prior to being diagnosed with lymphoma.
Mesothelioma is a rare form of cancer and, until recently, there was little to offer in the way of treatment. Treatments are available now, but as ever in parts of the UK the drug that is used as a front line treatment is not available on the NHS.
This is because for each year of (quality-adjusted) life it brings it costs too much, more than £30,000. Diagnosed with a mesothelioma in Scotland, Australia and many European countries, you will receive the drug – but not in England. Nice (which should perhaps stand for the National Institute for Curtailing Expenditure rather than the National Institute for Clinical Excellence) has made a ruling on cost-effectiveness grounds that the only drug that has been shown to have effectiveness, albeit of a limited nature, will not be available.
There is nothing intrinsically wrong with limiting treatment on cost grounds, but we need to be honest and open that that is what we are doing. It might seem reasonable to limit how much might be spent but I am not at death’s door yet, nor are many mesothelioma sufferers. Politicians will often come out with the old chestnut, “you cannot put a price on life”, well, they do put a price on it. In my case, a year is not worth spending more than £30,000.
Patricia Hewitt, my boss, has said: “A modern health and social care system has to be completely focused on the needs of its users,” and “We are trying to find out what patients need, rather than what it suits us to provide.”
There are many sufferers from mesothelioma out there, Mrs Hewitt, who have justifiable healthcare needs and who will not be provided with drugs which may prolong their lives because it suits you not to provide it on cost grounds. I do not think they feel completely focused on. Mind you, £30,000 is a lot of money to waste on a very sick person. You could, for example, employ for nearly a year a “senior parenting practitioner” in the London borough of Tower Hamlets.
I have gone from highly strung (for no good reason, now I think of it) consultant, father and husband into highly strung (now with a good reason) patient, father and husband. I can string a few words together when the fatigue, nausea and sleep deprivation are not so bad. I have not suffered badly from the chemo-therapy, but for some it must be like seasickness. There is a period when you think you are going to die followed by a period when you wish you were.
It is good for medics to be on the other side, you appreciate the good and spot the bad. I have liked the internet as a source of medical information for many years. It empowers patients to ask questions that encourage doctors to explain more fully. However, it cannot answer all the questions. You may not discover all that you do not know and sadly, some of the stuff you find may not be helpful.
Being a pain specialist, I looked at the pain management section of a leading university unit dealing with mesothelioma. Big mistake I know pain is a major problem in mesothelioma and I know that resources allocated to it are inadequate.
What I was not prepared for was facing the issue from the other side. By the end of my reading, I felt like looking for the web-link that would allow me for $39.99 (£20) a special offer to have a loaded 9mm Browning delivered to my door.
Reading one paper I felt angry that an expert had been blunt to the point of callousness. We need to care for patients, as well as treat them. Caring involves giving information in a sensitive fashion, not “click on here” to find out just how bad it can get.
But there is hope, and Jay Gould provided that. The problem for websites and access to the web for patients with cancer is that having advance knowledge can be both helpful and unhelpful.
I know what median means – it’s the middle of the distribution curve, the bell curve for those of a nonstatistical bent. Therefore, a median survival of 20 months means that, if you line up all the survivors, in the middle is one going 20 months. I, like anybody else, though, when reading that data, might take home the message that I will most likely be dead in 20 months.
This may or may not be true but it, to quote Gershwin, “ain’t necessarily so”. The curves for survival are not symmetrical – they may have tails. If the tail extends away to the right, you or I may have a longer survival, which, after all, is what we want.
Statistics are for populations, not individuals, in the sense that while they are a guide as to what might happen to us in general, they cannot predict what will happen to you or me as an individual.
Attitude matters, too. One of the things that keeps mountain climbers alive is, apparently, a sense of humor when faced with adversity. There is the story of two ice-climbers whose arms were both frozen from the elbow down. They stayed alive by banging their frozen arms together and laughing at the clanking noise.
Doctors often have a black sense of humor. You have to, when there is a chance that during the working day someone might vomit or bleed on you. Humor is important when you are ill – one of our strengths in Britain is our ability to see humor everywhere. I, like Brian, have to look on the bright side of life. Not wanting to be a median man, I look forward to being lucky, lucky even in my parallel universe.
Dr Andrew Lawson is a consultant in pain medicine at Royal Berkshire hospital