Wednesday, 16 March 2016

Not Like Your Regular Cystitis #9

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.

Right now I’m measuring my wee in a graded jug.  Between constant cups of hot water I void 100 ml a go some 20 or so times daily.  The average is 350 ml  7 times in 24 hours.  I’ve a way to travel.  BCG Cystitis is chemically induced and responsible for granulations below the bladder surface in the mucin layer.  It has no pattern to its attacks, intermittent, constant, sporadic, it’s all of those.  Weak, medium, intense - mainly the last two.  Predictable – never.  Available palliatives – none.   Tomorrow I’ll see the urologist again and what’ll he say?  Carry on enduring, catheterise, or have the bladder out.  Who knows?

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