Tuesday, April 28, 2015

Understanding the tremors, and thanks to Amy Gray

Before I talk about tremors, I want to pay tribute to someone I know only on Twitter and through her writing: Amy Gray, @_AmyGray_ who penned this on the subject of Belle Gibson:

Amy's understanding of both illness and society staggered me. Here are some particular gems:

They keep peddling it because we keep buying it, making it a profitable industry”, and

the one thing they have in common is answering the demand for personal experience over evidence”, and

The science community has been slow to see the value of open and plain communication, helping people understand complex problems and solutions”, and

Part of it is our desire for the simplicity of order returning, a happy ending, quick transformations and, more troubling, inspiration”, and

a sob story sells a product better than a true story”, and

a public that assumes someone with cancer and facing their end is automatically filled with wisdom and revelation. Instead of healing or dealing a cure that is often worse than the disease, we expect the sick to dance for us”.

Go and read the piece: it deserves the clicks.

From the bottom of my heart, thank you. You encapsulated so many things that trouble me, so neatly and so concisely, as to put me in awe of you as a writer.

Back to the tremors. When Ms T gets them, it's not a slightly flappy hand. It's an extreme hand-flap, accompanied by an arm swinging through a 45-degree arc, combined with general loss of balance and buckling legs, and it has a name.

Chemotherapy-induced peripheral neuropathy, CIPN for short.

We didn't know we should expect it, and that's a problem.

Right now, chemotherapy is dealt out by disease, and after five years of caring, I've decided that this is a mistake.

If you are on chemo for cancer, one of the functions of the support services is to tell what chemo is going to be like. If you're on chemo for your immune system, like Ms T is, it's dealt out by other specialties, the support services might be lacking …

And nobody outside the cancer-circle might remember to tell you things.

The thing is, non-cancer specialists might remark on peripheral neuropathy, without ever realising that they need to tell the patient that it might be A Thing. Whereas I'll bet an oncologist – or at least a cancer support person peripheral to the case – everybody around cancer will the explanation down pat.

Because it's not specific to cancer: if you get chemo, for whatever reason, you get the side-effects.

Nobody ever warned us about CIPN because that's not on the mental checklist of Ms T's specialists. I had to Google it up myself, to find out that it's actually a common side-effect.

The separation of treatment-by-disease is behind this, because the people most familiar with the side-effects of chemo are over in the cancer ward.

But dealing with a sudden case of terrifying drug-induced incapacity in a partner is not on the list of things a gastroenterologist or (mostly) an immunologist.

And if you have no dedicated support group charity to inform you, you have to find this stuff out without help, which is dumb.

So okay, the next time Ms T gets a dose of the tremors – trust me, it's terrifying – I'll know why. But some other patient, some other carer, should not experience CIPN as a mystery.

But as long as chemo is separated into ghettoes by disease, that won't happen. Some people will get better information than others.

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