This is all as easy as walking down the road. I know the form. I’ve done eight of these already. Visit the clinic, deliver a urine sample, suffer
a BCG instillation via catheter, go back home and sit about for two hours while
the obnoxious fluid does it work. Follow
this up by voiding (to use term lifted from the patient help leaflets), pour
Toilet Duck down the bowl, take a deep breath and then deal with the two days
of fog, urgency, flu, joint pain, head pain, and wee pain that inevitably
follow. By day three the symptoms are
lifting. By day seven they’ve gone.
In the UHW concourse which as a bit like a shopping mall
with added pyjamas they’ve opened a branch of Tiger. This is a Danish retail operation which
slices off the frivolous end of Ikea and mixes it with the sort of things
offered as prizes in fairgrounds.
Stuffed pandas. Fake roses in
ceramic pots. Plastic goldfish. Merchandise glitters in primary colours. Prices are well inside Poundland extremes. At
the till service is delivered by a woman dressed as a princess.
From my vantage point in the central seating area I watch
dressing gown clad customers queue to buy mirrors with ears, biros done up as
quills, spectacles with wiper blades,
callus removers, giant yellow ducks, pussy cat door stops, gonks and humorous
illuminating balaclavas. What they do
with this stuff on the ward I’ll never
know.
Back home my ninth instillation – the final of the three maintenance
doses – does its predicable stuff. I
feel fine then I don't. I
experience flu but run no temperature. My joints ache. I
spend hours in the bathroom. Bathroom
bathroom. Bathroom you are my universe. Bathroom
my old friend. I know every tile you own.
Days pass. BCG
reactions lift. I’m left with fog in
rolling sheets and urgency, slowly reducing.
Urgency. I should put a word in
here about just what that means. Those
who have never experienced it simply don’t know. This is more than simply a desire to pee and
to pee often. It’s a ball of prickly,
screeching pain that sits down deep inside your bladder. Hiding there it’s untouchable. You can’t scratch it or poke it or rub cream
on it. You drink endless cups of water and it makes
little difference. It’s made of glass paper. It has spikes like a metal horse chestnut. It revolves, it pulses, it ripples, it howls and it hollers. It has you there above the toilet bowl pleading to the deity for
salvation. Plead and scream. Do so for hours on end.
I used to say that the only time anything ever felt any good in life was in the first ten minutes after I'd completed writing a new piece and just
before doubt and worry inevitably set in. Was it
any good? Could I do it again? Was my entire life up to this point a fluke
and now hard cold reality was about to begin?
Post BCG urgency is a bit like that.
The only place where the pain can’t reach is that small slice of time
just after you’ve leapt through the pain barrier to start peeing and that spot
where the peeing finishes and the post-pee pulsing pain begins all over again.
I go to the pub. I’m
not 100% but then at my age I very rarely am.
If it’s a toss-up between being okay and being not then err on the side
of the former. Everything is fine. I have
a pint of cider and a chat. The world
once again turns.
But a day or so later with a vengeance it restarts. BCG you haven’t gone. BCG here you are again. It begins with a steadily increasing, permanent, long, and bawling
pain; a thing of spikes and screws, of
thorns and broken glass. It is filled with electricity, thick with acid, rich in unrelenting misery
and copious mind-numbing ache.
It’s hard to pinpoint but it's there, somewhere, deep inside the bladder. This is BCG cystitis. The complaint that officially seems not to exist. “It’ll pass. It’ll take time. Just wait.” It is totally debilitating. You deal with by avoiding alcohol, caffeine, acid fizz, citrus and tomatoes. You take pain killers. You lie down. You hope.
It’s hard to pinpoint but it's there, somewhere, deep inside the bladder. This is BCG cystitis. The complaint that officially seems not to exist. “It’ll pass. It’ll take time. Just wait.” It is totally debilitating. You deal with by avoiding alcohol, caffeine, acid fizz, citrus and tomatoes. You take pain killers. You lie down. You hope.
I’ve done two solid weeks now and it is still roaring. Return visits to Urology and my GP and
Urology again have harvested a mounting pile of naproxen, co-codamol, super-size
ibuprofen, urinary tract antibiotics, pills that shrink the prostate and pills
that relax the bladder. Life is
industrial strength fog.
So, if you were going
to attend one or other of the run of poetry readings and book promotion events
I was about the engage in this bright not yet spring then please accept my apologies. The Urologist suggests that BCG reactions usually cease after three
weeks. I’ve a week to go. I’ll get back on board. All is never totally lost. Today I am going to attempt to
walk to the paper shop. First trip out in days. There is one
public lavatory down the hill in the library. I’ll
pass that way. The whole adventure shouldn’t
take more than ten minutes. If you see
me I won’t stop. If I do I’ll have to
go. And we can’t have that.
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