Anecdotes and Averages

 

When you tell people about cancer - any cancer - there is always an urge from some people to tell you about a friend or relative who had the same cancer but lived for a long time, possibly 'beat' it (spoiler, it wasn't actually a WWE bout).

"My Granny smoked her whole life, had lung cancer and still lived to 96" 

"A friend of mine got myeloma 18 years ago and she is still alive now"

"They said that the brain tumour had completely gone, completely, and that is now ten years ago"

Recognise any of those? Have you said any of them yourself? Well in fact one of those was said to me last week and it was of course well-intended. I even have anecdotes myself. Should I tell people about my lovely mother-in-law who had very major bowel cancer removed on the day of Charles and Diana's wedding and then went on to nearly outlive the Queen? It's true, but would it be helpful to tell it to my lovely friend Adam who got stage 4 bowel cancer and was taken from his young family in less than a year? I think not. It might be intended to help, but it really doesn't, from any point of view.

And anyone with a statistical bent (yours truly among them) will instinctively lean not towards the anecdotes which are in many cases true but almost always exceptional outliers. We will lean towards the averages, because they are more useful, even if non-human and not very anecdotable.

The median survival rate for myeloma is currently 62 months, so a little over 5 years. A median average is defined as 

the middle number in a set of values when those values are arranged from smallest to largest

So the person who lived for 18 years is in that set but way out to the right. And the one I am looking at is the one in the middle, because that is a good and very large steeple to aim for in your chase across the fields of life. I may be boring, but I just kind of like that middle number because it give you something to plan with. If I looked at 18 years I would be way too optimistic. If I looked at the far left of the set I may feel a little down.

Now Cro's lovely straight-talking oncologist always used to say 'People are not statistics' and he was very right. You each have your own progress with the cancer affecting you (but it is still not a journey). And you do not become a statistic until you die. But then you do, because your death will contribute to the - hopefully increasing - median survival rate for your cancer.

And the anecdotes don't usually include these equally true ones. 

"This isn't supposed to happen. The doctor has told me I will be dead in two weeks" (and I'm afraid she was, riddled with something she had not ever expected or perhaps knew and always pushed away)

"Strong as an Ox and smart as a pin but dead in three months with liver cancer"

"He was the very last on his ward to die. Diagnosed in February and dead in November"

All of these are true and are people known to me. The last one was my father in 1977. But they are generally the anecdotes that are not shared, but are just as true as the outliers at the other end.

So my advice to people who have heard from someone with a cancer diagnosis is to just leave the anecdotes behind and ask how their friend is feeling (they will usually tell you, and it helps to tell) or to ask them about the treatment they have been offered and what they are going to choose (because that reminds them that they still have agency in the world). And sometimes people won't want to talk, but if they do they will like it that you are talking to them. Cancer diagnosis can otherwise be a lonely place.

And also if you tell them about the huge outlier you know, then all they are likely to do is do worse than the person you know. Which might make them feel like a failure from the start.