The Hodgkin’s House of Horror

One of the most frightening memories of my childhood…and there were a few…finding out my dad was a Charlton fan for example…was an incident at St Giles’ Fair in Oxford in 1981.  James Steel, my sister and I had paid our ten pence and ventured into the inky darkness of the House of Horror ‘attraction’.  I don’t remember much apart from being at the back of the trio and encountering the terrifying banshee that was my sister screaming, arms twirling as she hurtled back towards James and me like a bowling ball.  Clearly we were brave making the only girl, two years our junior, go in first.  We made quite a sight re-emerging from the entrance at top speed.  I’ll never really know what she saw in there.  The family never speak of it more than thirty years on.  I’m pretty sure we didn’t get a refund.

Creeping around a House of Horror, wondering what’s around the next corner, aptly describes my current state three months post transplant.  You never quite know what life has in store next.  The really good news is that last week’s scan is still showing complete remission, but the white cell and neutrophil counts remain stubbornly low leaving me open to infection.  That tied to the fact that the immune suppressants are being cut means that the good ship Andy is being navigated between the Scylla of infection and the Charybdis of Graft versus Host Disease (or GVH for short).

This illustrates one of the fundamental weaknesses of cancer care and points to the next stage in its development.  Yes, a lot of what we can do now is fantastically clever, but the range of outcomes seems so random that it’s surprising that treatment isn’t yet more tailored to individual genetic make-up or need.  Essentially treatment at the moment is a sausage factory.  If you’re looking for a cure after initial diagnosis for late stage Hodgkin’s then the standard of care is for everybody to get ABVD chemotherapy.  Some people respond, some don’t, some get really ill, some don’t, but none of that data seems to be captured and put to good use.  That means we presumably make the same mistakes over and over and at every single stage the doctors simply can’t give you any indication of the answers to the two questions that concern most patients before a regimen: 1. Will it work? and 2. Is it going to make me feel vile?

I, for example, had a relatively ‘easy’ time during the Nivolumab trial that resulted in remission, but I know somebody who didn’t tolerate it at all and ended up having to abandon the treatment.  I’m sitting here feeling relatively healthy given the stage I’m at – 90 days post allograft, but that same person is currently just re-emerging from an induced coma in intensive care following their transplant and has a real fight to survive ahead of them.  They will certainly be in hospital for some months.  Is medical science not yet advanced enough that it can somehow predict the outcomes?

There are limited criteria used before a course of treatment is prescribed, but those are largely limited to the staging of the disease as I referred to above (basically how far it’s spread) and the age and current health of the patient.  It’s a little bit like that scene in Blackadder II when Edmund visits the doctor who prescribes a course of leeches for everything, “I’ve never had anything that you doctors didn’t try to cure with leeches”.  And yet two hundred years before Christ, Galen was at least having a go at an approach to medicine based on individual human temperaments or the ‘four humours’, a system which suggested a connection between personality and physiology.  I mean it turned out to be bollocks, but fair play to him for trying and he was a visionary in many other aspects of his approach to understanding the human body.

So, the best that the medics can do is offer reams of potential side effects, tell you not to eat runny eggs or black pepper and give out a load of outdated survival percentages.  In theory the odds of getting through the first year post allograft are about the same as surviving a game of Russian Roulette.  Given the choice between that and a course of treatment, well hand me the revolver.  I don’t say that lightly and I don’t say it for dramatic effect.  For anybody who survives the disease and treatment, and I fully expect to do both, none of us gets the time back.  Cancer takes a lot, but what it takes the most is time.  If it doesn’t shorten life then it at best puts in hold for both the patient and the patient’s loved ones.  It casts a long shadow, at least for a while.

I’ve been listening to Warren Zevon a lot recently.  He died of cancer back in 2003.  A year or so before his death he appeared on the Letterman show, already terminally ill, but still able to perform.  Letterman asked Zevon whether his situation gave him a unique perspective on life that meant he could offer some wise words to the audience.  Zevon paused and then said, “Enjoy Every Sandwich”.  This is advice, as my expanding waistline will testify to, that I’m taking literally.  I may not know what’s around the next corner, or what lurked in that dark nook of St Giles’ fair thirty years ago that so terrified my sister, but I have an excellent grasp of what food’s in my fridge and don’t plan on wasting any of it.