This thing I’m presently suffering from has a name. BCG Cystitis.
But it’s not like your regular cystitis.
There’s no infection to be hit with antibiotics and the stinging doesn’t
go when you pour cranberry juice down your throat. BCG Cystitis’s game plan is to get in there
and stay and that it certainly does. Hunting
the web for information on what might be wrong pulls in few results. Out there among the patient advice sheets and
what-to-expect guides issued by health establishments the world over the most
you get is tantalizing references to rare incidence of BCG intolerance but with
little detail of what exactly this might consist. Nobody tells you what to expect.
The Americans are better than we are. They have larger bladder cancer support chat
rooms and a fair number of good souls right across the fifty states who are
willing to share their experiences with all-comers. In answer to my enquiry about whether or not
anyone else has gone through this rage of stinging pain and what they’ve used
as a palliative pulls in sixteen replies. They suggest drugs. Some I recognise but most I don’t. There are ones, apparently, that turn your
wee bright green and make your tear drops stain the pillow. And there are ones that leave you so out of it
that you can no longer answer the phone.
Helpful souls suggest hot packs, cold packs, hot baths, seat pads, diets,
antacids, lie downs, never lifting anything heavier than a kettle of water, using medicinal marijuana, hanging on in
there, doing your best, sitting it out.
How long does it last for, I ask?
41 months was one response.
In fact this, in essence, was the reply I got five weeks
in from the UHW urologist. There’s
nothing that can be done. You have to sit it
out. It can go on for months.
I’m given more pain killers, bottles of stuff that neutralize
the urine, antidepressants that will relax the bladder but sort of don’t. I’ve given up alcohol (it’s a diuretic) as
well as tea and coffee (them too) plus citrus and tomatoes (they exacerbate the
stinging) and try to get by on plain food.
Anything to settle the raging pains.
They come on constantly and shriek and rage like demented beings. I’m on the floor rolling. Then I’m in a dark room wishing the world
would go away. Constantly I’m running to
the toilet. 28 times in 24 hours. Life’s pleasures have been considerably reduced.
On the positive side, though, says the urologist,
immunotherapy is supposed to elicit a reaction and your bladder has certainly had
one of those. And that’s a good
sign. The cancer has been
challenged. But has it been beaten? We shall see.
Back in the day when I was about 9 along with polio,
scarlet fever and not having enough money to buy shoes TB was the national
curse. An immunisation programme was instituted
across the land. At school you stood in
a queue and got a jab of BCG in the upper arm.
From this rudely delivered imposition grew a scab, nipple like and incredibly
sore. The deal was you didn’t touch
it. Leave it well alone and the BCG
would do its work and knock TB from the world.
In the school corridors the bullies stood in line. As you passed they punched you in the upper
arm. Wham bam and it hurt like
hell. My first encounter with
BCG-related excruciation. Obviously,
although I was not to know this at the time, not my last.
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