Wednesday, 14 January 2015

Background to a Serious Diagnosis

It's not easy to determine where this should start.  I am 66 years old and hoping to make it past 67.  For a number of years I have had various medical 'scares', none of which have really materialised into anything significant  That changed on 13th January 2015 when, almost completely out of the blue, I was given a serious diagnosis and a pretty poor prognosis to go with it.  That's probably as good a place to start as any.
For about two years, I have been on a preventative drug called Azathioprine to control ulcerative colitis.  It's a pretty powerful drug, known to have side effects, particularly on liver function.  So over the whole period, I have been subject to regular monitoring, including quarterly blood tests.  So far so good.  I imagined that, if anything unpleasant was going to happen, it would be picked up early and 'nipped in the bud'.  More reassurance came last autumn when my colitis was declared to be in remission and my Azathioprine reduced by 25%.  In November, my liver function tests started to show a negative trend.  The Azathioprine was stopped altogether, although the consultant didn't believe it was causing the problem.  The search began for other possible causes with more frequent blood tests, all of which showed further deterioration in the LFT results.  What next?
The consultant had a pretty good idea that it was going to be repeat of a problem I had four years ago and went looking for it via an MRI scan.  He was expecting to see some sort of obstuction in the bile duct, as this was entirely consistent with what was happening to my LFTs and with the symptoms I was beginning to experience.
At this point, I have to shout long and loud about how incredible our NHS can be.  Having seen him on the Thursday lunchtime, I got a call from St Richard's Hospital in Chichester the next day to invite me in for MRI on the following Monday morning at 0745.  Wow!  I think that even the consultant was surprised - he was on leave that week so didn't pick up the results until the Monday after.  He called me personally on the Tuesday to say that there was 'nothing nasty' on the MRI but he hadn't seen what he was looking for.  The wider picture was unclear and wasn't discernible from the MRI scan which, presumably had been tightly focused on the biliary tree.  Christmas got in the way to an extent but I had a CT scan on 31st December, which they followed up with abdominal ultrasound just a week later - more fantastic service from the NHS!
He called me in for an outpatients appointment on 13th January to deliver the verdict.  As I sat in the waiting area, I reasoned that if the Macmillan nurse was in the room as well, it was going to be bad news.  I had been introduced to her four years earlier on one of my previous 'scares'.  Sure enough, there she was.  So I said a cheery hello and remarked that this didn't look as if I was about to get any good news.  I turned back to the poor consultant, who had what I can only describe as a funeral face on.  Poor bugger, he had the terrible task of telling me the news that they had found a mass on the pancreas that, in reality, could only be one thing, and that it had already spread to the liver.  That means that surgical intervention isn't an option and that the only treatment is chemo for what he termed 'an extension of time'.  I asked what I thought were a couple of intelligent questions, including the likely prognosis if I didn't opt for chemo.  He said he thought I would be in serious trouble in three months.  That focused my mind a little!  He explained the next steps - a referral to an oncologist at QA at Portsmouth, who would be taking things forward from there.
I will update this from time to time but, having dealt with the background, I intend keeping it light.  It will help enormously if you try to do the same!

4 comments:

  1. I hope that you find BLOGGING as a space and a platform to talk about whatever is on your mind, and to be as frank and as open as you choose. I am sure that many people will want to support you in any way that they can x

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    1. Thanks Hanya. I am giving it a lot of thought. It has potential to be a really useful platform - but only if people are willing to keep reading it. I wouldn't want to put them off with too much ranting and raving! x

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  2. Rant and rave away Mr G, I found my breast cancer forum a great place just to put down all the stuff that was difficult when face to face. We all love a good rant 😊

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