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 organised 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
lagger – 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 energising 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 frontline 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 weblink 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. My esteemed colleague who, at the
beginning of a presentation on mesothelioma had a slide which showed a
photograph of the “shit creek paddle shop”, should realise that it is
accessible from the internet.
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 humour 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 humour. You have to, when there is a
chance that during the working day someone might vomit or bleed on you.
Humour is important when you are ill – one of our strengths in Britain is
our ability to see humour 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
a lucky, lucky bastard even in my parallel universe.
Dr Andrew Lawson is a consultant in pain medicine at Royal Berkshire
hospital
Thank you Dr. Lawson, for your frank and thoughtful article. But how do we encourage the doctors practicing traditional western medicine to embrace alternative treatments? Why do we assume that chemo and radiation are the only way to go when it was the chemicals that got us here anyway?
Andrea, Chicago, IL ,
Thank you Dr Lawson for writing the article. I am also experiencing treatment from the other side. I have been diagnosed with advanced sarcoma at age 53 and have had to retire from nursing. Having insider knowledge makes you more vulnerable as you know all the things that can and do go wrong and in a sense have to manage your own care. It also meant that I was able to ask to go to a specialist sarcoma centre at the Marsden where they have really fought to get me the best and most up to date treatments. I send you good wishes and good luck,
Tricia Moate, Poole
Tricia Moate, Poole, Dorset
I think Dr lawson needs to read Stephen Jay Gould's article again. The median survival period is the period of suffering from a disease after which half the sufferers will have died. And the distribution is certainly not a bell curve (the normal or Gaussian distribution curve to statisticians). Gould's point was that, for his disease, half the sufferers would be dead after eight months (the median) - but there was no obvious period by which all of the other half would be dead. He decided he would be well out into the 'right tail' of the distribution - and he managed 20 years. With Dr Lawson's background and temperament, there is no reason why he should not do the same.
Michael, Malvern,
Thanks to Dr Lawson for mentioning the role of statistics and their interpretation. When faced with the terrible news of a life-threatening disease, it can be helpful to remember that “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 individualâ€.
Jo Corke, Bristol,
It is exceptionally hard to be on the other side
For a number of weeks I have been an inpatient and the care that I thought would be there has not been. I am a doctor and the care given to the NHS patients is non existent and it takes a lot of shouting and stressing that you need something before you are even considered to be telling the truth as if being a patient makes you a compulsive liar and the way that you are patronised by your colleagues because you have fallen unwell
Henry North, London, UK
My thoughts and prayers are with Andrew and his family. I lost my husband to mesothelioma - July 17th 2005 - Campbell was 52 - we had been married 32 years. Campbell was a Painter & Decorator
Sheena, Campbeltown, Scotland
Yes there are some successful alternative treatments for cancer, for mesothelioma Dr Lawson may want to consider the ITL Cancer Clinic (Bahamas) . They have some success cases with their immune treatments. But I think it is naive for Annabel Smith to think that you can always cure cancer with alternative treatments. I was lucky to be able to to treat my colon cancer recurrence last year with a diet administered under the A P John Cancer Institute in Florida. I had spectacular results. Unfortunately I have another suspected recurrence but due to a small bowel obstruction caused by adhesions and spending 17 days on a drip with virtually no food I find myself having great difficulties sticking to the dietary regime and may have to seek conventional treatment. I was a nurse and know chemo and radiation can be a dreadful experience but it does save lives. The thing is that ALL treatments should be made available to people with cancer. If we can fund a war we can fund cancer treatment.
Jessica , Harrow, UK
Odd how all these treatments are available on the NHS in Scotland but not in England. Wonder why that is and also why us Englanders who subsidise the entire union are happy to maintain that status quo instead of rioting as the French would do.
I guess the rest of my fellow Englanders are probably like me, too busy trying to work out where to emigrate to to bother about the disaster we now live in, where means testing rewards only those who refuse to save or work. Thanks Tony for your legacy!
Stephanie, London, England
Mesothelioma is a terrible disease and I have so much sympathy for those diagnosed. However, it is possible to apply for compensation from former employees, and if this isn't available (for example if the company, or more importantly their insurer has gone bust) to apply for compensation under the Pneumoconiosis (Workers Compensation) Act. This money can help towards the cost of living expenses. If you're diagnosed with, say, bowel cancer this provision is not available to you.
Sadly mesothelioma cases will only increase over the next 10-15 years.
Vanessa, London, UK
Annabel Smith: if you are unlucky enough to develop ovarian cancer will holistic therapy save you? I rather think not. Recall the case of the Dutch entertainer, Sylvia Millicam,who consulted 30 or more alternative therapists and died in agony from untreated breast cancer. I'd advise you not to be so gullible if you are ever diagnosed with cancer yourself.
Dr Lawson does not raise the question of funding; if there is to be unlimited access to medication, taxes and National Insurance will have to rise as well. I think that he should have been prepared to consider this in his article. (And that S J Gould was probably an 'outlier' anyway, not someone in the centre of the distribution curve for this illness.)
Diotima, London, UK
I was so sorry to read the article by Dr Lawson. My father passed away from this terrible disease 11 years ago, and like Dr Lawson he was "not the traditional dockworker or lagger", but was a first-class honours degree chartered engineer, who unfortunately came into contact with asbestos during his early working years with Scottish Power.
I just think that due to the incredibly aggressive nature of this particular cancer, it is very difficult to treat, and it was very difficult to watch its unstoppable assault on my father.
I hope that Dr Lawson is able to access the treatment he requires, and I wish the best for him and his family.
Fiona Haigh, Glasgow, Scotland, United Kingdom
WHY is cancer such a problem these days? There is complete consensus in the holistic health sector on how to cure any cancer. You only need spend a couple of days reading various articles on the web, &you will understand the nature of the disease, &realise that far from being a black hole of mystery, the cancer puzzle is easy to solve. What I CANNOT understand, &am extremely bitter about given my father's easily avoidable death from cancer 2 years back at the hands of the ignorant school of established medicine in this country, is why UK doctors pass off holistic cures to cancer as being quack medicine, when their success rates so greatly outstrip those of chemo- &radiotherapies. I can only blame the stranglehold of multinational drugs corporations for this paradoxical lack of communication between the holistic &established schools of medicine. This problem doesnt stop at cancer either - so many illnesses are easily curable using simple lifestyle changes. When wil the madness end?
Annabel Smith, Manchester, UK
I agree with Dr Lawson, It is time that the government put money into funding for mesothelioma.
My father was diagnosed in July 2006, 1day before his 65th birthday. He was lucky, if you can be lucky under such circumstances, he was suitable for radical surgery, although unfortunately it is in its advanced stages and there islittle more they can do. We discussed fitting a permanent chest drain, as dad doesn't want to spend whatever time he has left in a hospital. Unfortunately the NHS is in financial crisis and can't afford it, eventhough the staff on the wards desperately want to fund this for each and every sufferer - the cost, just £1k.
The drug is a lifeline for sufferers and we are lucky enough to be in a position to fund the £25k required for dad, there are others who can't. These men and women did nothing wrong, the majority just went out and did a day's work we repay them by witholding a potential lifeline for them, there doesn't seem any jutsice in that to me.
Lesley Dingley, Nottingham, UK
My father died of malignant mesothelioma, so I have a small insight as to what you are going through. I wish you the very best. I was foolish enough to trawl the internet and found the "foremost specialist" in the disease at that time and arranged for my father to see him. To say that he had the bedside manner of a dead sheep is an understatement. He seemed more interested in the disease than the patient and, apart from adjusting medication, offered nothing else.
There is a timebomb waiting to explode in regard to this illness and more should be done to highlight and treat it. I sincerely hope you get your medication - after all you've contributed enough - tax-wise and professionally.
Carol, London, England
Dr Lawson, you may like to look at the website: www.killingcancer.co.uk about Photodynamic Therapy. This is currently being researched and has already been used with some success to treat some forms of cancer, including early (and it does stress 'early') lung cancer.
With all good wishes.
Rowena Lee-Felthouse, London,
Andrew, I can see that you will play an important part in educating us all about the interface between doctor and patient as you are ideally placed to do it. Perhaps this is your task along with getting in as much laughter as you can.
Alice, Brighton,
from my own experience humour and intelligence are both invaluable in dealing with adversity. I know a lot of people share the concerns raised above regarding the NHS myself included.
paul, preston, england
Good luck doc.
Fronika, Slough, England
I have spent my working life dealing with personal injury claims for insurance companies. Recently, I have had to deal with a number of "Meso" claims. I have to say I have found them some of the most depressing and upsetting which I have ever had to handle.
When Dr Lawson was training, the effects of asbestos were well-known. His teachers/employers should have known of the risks involved and taken precautions to deal with them.
Traditionally, Meso has been considered to be a death sentence: the period from diagnosis to death being about twelve months. I am heartened to know that there are now treatments which can prolong the life of sufferers.
Defendants (or normally their Insurers) are now obliged to consider rehabilitation and pay for it. I assume that Dr Lawson earns more than £30k pa and consequently keeping him in gainful employment would be cost-effective. I would suggest that Dr Lawson seeks legal advice and requests access to rehab in his letter of claim.
Paul McGovern, Fleet,