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.
