Ian's Story

You have to laugh at some of these things. When I took Glivec on the first day it was an absolute disaster. The nurse that gave the tablets to me was more interested in the tablets as he had never seen them before and he was the one advising me. I popped the first pill and 4 hours later was writhing in agony. Every bone in my body was screaming at me! We used the callout procedure and explained to the various chaps at the other end what the problem was ,they all however must have a script in front of them because they wanted to know the ins and outs of everything, none of which was relevant! Eventually we spoke to the on call doctor and explained it was all to do with GIST,at which point he asked what GIST stood for! I could have cried!

Fortunately whilst waiting for various calls back we had spoken to the locally manned cancer ward of another hospital and the advice was get some morphine! We relayed this to our unsure doctor on the phone who subsequently agreed and arranged for us to go into casualty to get the fix. I got there on all fours in the back seat of a pick up truck because I couldn't stand or sit and the roads were too flooded for a car it was 11.30 at night. We came away with a big bottle of oral morphine with instructions to take 2.5 mills and if that did not work wait half an hour and take 5 mills. We followed the instructions but it didn't have much effect! We phoned back those lovely cancer nurses again (they are on the ward 24/7) who clandestly advised that their patients usually swig it from the bottle! This procedure was followed a little more scientifically and did the trick although I topped up every 2 hours with about 1 hours sleep in-between.

It took about 8 days to get off the morphine and now 2.5 months later I have hardly any noticeable side effects and would consider that from a wreck I am now 90% fit and raring to go. Amazing stuff Glivec! I think the moral is we know once diagnosed what our problems are better than most ,our cancer is rare and you cannot expect everyone to be an expert. The best help I have had is this forum and long may it be used I think it's great and am really grateful to those particularly who take the time to regularly share their experiences. We are all slightly different but there is no need to reinvent the wheel! I look back on the bad stuff and laugh at it, it makes A great story!

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