Don't let PSC stop you!

This is what one of our members, Andy, has to say about living with PSC.

Some 23 years after my PSC was first detected, my wife and I decided to celebrate our 60th birthdays (which occurred just days apart) with a barn dance.  To do the job properly, we hired a church hall, the best band and caller we knew, and some caterers who we had previously encountered and knew to be good.

And what an evening we had!  About 60 of our friends and relations danced and laughed the night away.  Regrettably the gathering did not include several good friends – younger than us -who had been supportive and sympathetic when the bombshell of my diagnosis first hit us, but who are sadly no longer with us.  On the other hand our fellow dancers included four of the youngsters who accompanied me up and down Ben Nevis, Scafell Pike and Snowdon, 18 months after my liver transplant.  It was a Baptist church hall so it was an alcohol free evening.  Never the less, an email we received afterwards referred to me having been leaping around as though attached by bungees to the ceiling.

Is this what we anticipated that evening 23 years earlier when our GP phoned and confirmed that my liver function tests ‘gave rise to concern’?  Of course not!  In the early days after my diagnosis we ricocheted around a dark, dark, cavern of fear and dread where disaster and misfortune reverberated around the walls and the sun didn’t shine.

How wrong we were.  In those early days we couldn’t conceive of the possibility of more than 20 more years of international business travel, of more than 20 more years of family holidays, of more than 20 more years of challenge, success and, sometimes, failure. We couldn’t conceive of the possibility of me lying on my back on a rough grassy slope with the sun on my face as I listened to our two small boys bubbling with the exhilaration of having just accompanied me up Snowdon for the first time.  We never expected the sheer terror which would result from giving our 6 year old son control of the outboard motor of a hired boat on a Scottish loch. We didn’t dream of the time we would spend on rain swept touchlines urging our boys to greater effort, or of the lump in the throat pride we would feel as we were spectators of their concerts, and prize givings, or the companionship as we worked as equals clearing the road of snow, and played as equals zipping from venue to venue at successive Edinburgh Festivals.

Our mistake of course, the mistake we all make in the early stages, was to allow dread of the unknown future to blot out the potential of the here and now.  What the years have taught us is the ability - and let’s face it, the mental discipline - to stick two defiant fingers up at tomorrow and grab hold of today.  That’s not to say the last 22 years have been one continuous round of beer, skittles and wall to wall delight.  There have been days of doubt and moments of tears.  On a day when you feel knackered and bad tempered, it’s monumentally difficult to find the belief that the overwhelming probability is that there are better days ahead.  Never the less, the fact is that for most of us, virtually all the time, there are MUCH better days ahead.

We lived with my PSC for 16 years before my transplant, had a 4 year PSC free spell after my liver transplant (punctuated in the middle by an appendicitis which was FAR worse than having a liver transplant) and have so far had 3 years since my PSC returned.  I can, with total honesty, say that I have no complaints with the hand ‘fate’ (by which I mean God) has dealt me.  I look around at friends and colleagues – some quite young - dealing with arthritis, asthma, eczema, Crohn’s disease, heart problems and other misfortunes, and realise that I’ve had, and have got, a pretty good deal. I’ve met some super people along the way who I would not have encountered on a different path. Ahead lie all sorts of challenges and opportunities – to which I should now attend, so if you’ll excuse me, I’m just off to try to change the world . . .

Back to top