Things to do in Cambridge when you might be dying

Being diagnosed with cancer concentrates the mind. In my case, nearly four years ago, the diagnosis was followed by two operations and six months of chemotherapy. Chemo is quite extraordinarily unpleasant and the third worst experience of my life. (Since you ask, the second worst was divorce and number one was attending a Neil Diamond concert).

One thing about going into hospital is that no matter how sorry you feel for yourself there is almost certainly somebody else worse off than you. Even in the chemo ward, there are people who look as if they are clinging to life by the slenderest of threads. Some weeks you go back and one of the “regulars” is missing, presumed dead.

The process varies by cancer type and stage. At stage III this is what I got. First there is the intravenous platinum-based drug. You are first given a saline drip, then a drug that is intended to reduce the side effects of the drug, then the drug itself, then a drug to help you recover. The whole thing takes about four hours, during which you are sitting in a chair watching the less fortune people who have to be wheeled in still in their beds for treatment.

For some reason that no doctor was able to explain to me, platinum is good at killing fast growing cells like cancer cells. Unfortunately it also attacks other fast growing cells such as the ones in your stomach, so most people get a lot of nausea, and hair follicles, though I didn’t get any damage there (not that it would have been very visible).

The strangest thing happens when the platinum drug enters your system, which is that you feel metallic. Your tongue has a weirdly metallic feel and everything eaten or drunk tastes metallic. So you stop eating and lose a lot of weight, and not in a good way. The sense of metal taking over your body is quite palpable and coldly invasive. A kind lady brings round sandwiches at lunchtime but it’s very hard to eat when everything tastes like tin.

At least that effect wears off after a few days. The second major side effect of the platinum drug is peripheral neuropathy – it damages and can eventually kill the nerves in your hands and feet. So you drop things a lot, can’t take something out of the fridge without using gloves and you start walking oddly. These effects can be permanent in some cases but most people get the feeling back eventually.

In addition to the intravenous drugs you take tablets at home, twice a day with other tablets that are supposed to suppress the nausea, but don’t. The tablets just make you feel very tired, and nauseous again. The drugs are given on a three week cycle: intravenous drug and two weeks of tablets followed by a week off to let your body struggle back to a level where it can stand being attacked again. You then have a check up with a hospital doctor to see if your body is indeed strong enough (in particular they monitor the cell count to makes sure your immune system hasn’t collapsed). The side effects are cumulative, so although you feel better in week three of each cycle than in week one, the successive week three peaks are on a declining trend. As the consultant put it with typical British understatement, by the end of the whole process “everyone is really rather fed up”.

The check-ups varied according to which doctor was on the case. One Scottish doctor, having found out I was a finance teacher, would start his consultation, not with a question like “How are you feeling?” but rather “What do you think of the Yen?” or “How about those bond yields?” We would discuss whatever he had read that week in The Economist and eventually, reluctantly, he would get down to the business of telling me whether my system was surviving.

Quite how I managed to perform in a play and then teach my MFin Financial Institutions and Products course that summer and autumn I now can’t understand. A mixture of foolish over-confidence and stubborn refusal to give in, I suppose.  I do apologise to students on the second year of the MFin for a below-par performance.

Patients aren’t customers

The National Health Service works pretty well at the emergency and serious illness level, but not so well with less urgent ill health. In recent years politicians have been convinced to adopt a “quasi-market” approach that regards hospitals as competing businesses and patients as customers seeking choice. This has some potential merits as far as choosing your appointment, getting a second opinion and being treated like a sentient being rather than a passive dummy for experimentation. But something has gone wrong with the “consumer” side of things. At one point, when it became clear that my neuropathy was getting serious and risked becoming permanent, a doctor asked me if I wanted to cut the dose by 25%. From a very clever person, a very stupid question. Just conceivably, given a great deal of extra information and many hours to analyse it, I might have been able to come up with a coherent and useful answer to that question. But even then it would have been absurd. The doctor is paid to be the expert and make the judgement, which they might well then explain to the patient. But to give the patient the impression that they are choosing their own treatment is likely to cause great distress, especially to the vulnerable elderly.

I would guess that what everyone with cancer does want to be told is their chances. Survival rates are far higher than in the past when cancer was almost always a death sentence and people barely dared speak the word. The UK still lags a bit in survival rates but the gap with best practice has narrowed considerably, and Cambridge is a particularly good place to have treatment as there is so much research going on. But the doctors were very reluctant to give a number, or even a range. There are plenty of online sources, though it’s hard to know which are really reliable. Macmillan seems to have credibility, according to experts I’ve spoken with. But they offer very broad statistics. So you may read that 50% of people with your stage of cancer are still alive five years later. But is that across the whole population? Most people with cancer are already old and many will die in the next five years anyway. So you want – well, I wanted – to get a figure more accurate to my age. I was repeatedly told that I was very young to have cancer (more than two standard deviations from the mean I discovered). And so any estimates would be based on less data, entailing a larger confidence interval. But not one of the doctors wanted to have this sort of conversation. I was left with the impression that some of them didn’t really understand the idea of conditional probability. Others, rather patronisingly, would say, “well we don’t want to think that way do we?” Forgive me, but “we” sometimes do.

Music to do drugs to

Sitting in a chair for four hours or more every three weeks, you search for things to fill the time. I settled into a routine. I would read for an hour or so, until the fatigue, metal taste and general sense of misery made reading too difficult. I re-read quite a lot of Russian short stories, though not Tolstoy’s The Death of Ivan Ilyich (which I would recommend at other times). Then I listened to music, including a lot of English music, much of which has a slightly melancholy theme. The music of Ralph Vaughan Williams, for example, uses a lot of traditional English folk music, with its characteristic minor keys. Quite where this melancholy comes from is not clear. There is a fascinating book called The Country and the City by the celebrated Cambridge Professor of English (though he was Welsh) Raymond Williams. He identified a sort of rural lament in English poetry and fiction running back at least as far as the sixteenth century. One possible source of this myth and the sadness of much English folk music is the memory of the tragedy of the Norman invasion of 1066, which imposed a brutal form of feudalism on England. This sounds a bit fanciful. But even much of Pink Floyd’s music has this “English” feel.

Another song I listened to regularly, not English but almost unbearably sad, is a version of a popular classic by the American singer Eva Cassidy. The song is Over the Rainbow, probably the most popular song (in the west at least) of the twentieth century. It is the most famous part of the 1939 film The Wizard of Oz, thought to be shown more times on American TV than any other (though repeats of Friends must be catching up). The film, which just may be an allegory of the gold standard but probably isn’t, wasn’t regarded as a likely classic at the time (like that other classic, Casablanca). The song was almost left out, which shows that the producers really didn’t know anything (*), as it became a huge success.

Eva Cassidy’s version is a beautiful, novel one that finds new magic in this simple, yearning song. What makes it truly poignant is that Cassidy herself died of cancer herself in 1996, several years before she became famous. I was one of the people watching a fairly obscure British music TV programme when the Cassidy video came on and the sub-titles told us that she had died some years before. The BBC was flooded with requests to show it again and for more information and she became a star, first in the UK and then in her native USA. Her life story was as heart breaking as her version of the song.

Source: http://www.evacassidy.org/eva/evapix.shtml

Fortune doesn’t necessarily favour the brave

I recovered from the chemo and the cancer and was completely discharged some time back. Lance Armstrong has been completely discredited as a competitive cyclist but in his book It’s Not About the Bike he says, correctly, that surviving cancer is not a fight or a struggle, it’s luck (plus the best medical treatment current technology provides). The misleading metaphor of fighting cancer implies that those who die didn’t fight hard enough, which is utterly unfair and demoralising to those who don’t make it. Having lost three friends to cancer in the last decade I’m with Armstrong on this – it’s luck whether you get cancer in the first place (other than the risks from smoking) and it’s luck whether you survive.

*

 (*) My colleague Allegra Hadida argues that the much quoted statement about the film business by screen writer William Goldman, that “Nobody knows anything”, is wrong, because research tells us quite a lot about the economics of the film business. But I think Goldwyn’s point was that nobody knows what will please the audience and producers often just get lucky.

3 Responses to Things to do in Cambridge when you might be dying

  1. At the risk of coming across all maudlin here, Simon, I hereby proclaim that we’re *all* pretty lucky this story ends as it does. Thank you for fighting the good fight, and making it so.

  2. Trust all is well with you now. Re your Wm Goldman observation, I think he mentions that the Hollywood exec who turned down ET then signed up (for instance) Star Wars, so he reckoned that it came out about equal. Same as the guy at Decca who turned down the Beatles ( go back to Liverpool, guitar groups are finished), but then signed up the Stones.

  3. Excellent post Simon. Very interesting to read. Glad that you are all fine now.

    The chapter on Steve Job’s fight with cancer are interesting. Following the discovery that he had cancer, at first he refused mainstream treatment and went for alternative therapies that didn’t work. Later on, no matter how much money he spent on trying the latest medicines, it didn’t work.

    Maybe we still have so much to understand that the luck component is still very large.

    Best,
    Pedro

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