Due to this non-compliance i spent a lot of time in Castlebar. Its not that i hate the place, i had some great times in there its just that i knew what it entails. Physio, needles and always there was some complication. I was blessed that this was my local hospital. The care is second to none and the staff are wonderful people. Nowadays i find that the personal level has gone out of the nursing staff and its near impossible to find a doctor that cares. I was lucky that every consultant i have encountered in my time got to know me on a personal level and not as that child who has CF. I have made some great friends through the hospital stays and this was the way i lived. It was like work for some people but i tried to make the best of what i had. In Castlebar they are regimental, there was no falling asleep on nebulisers or skipping physio. These were essential and Dr O Neill drove this home. His biggest flaw were the ridiculous saying he would come out with to get his point across.

On one of his many visits i was sitting in the chair, you were always up for him because he didn’t like patients sleeping in. I was in bad shape, constantly losing weight and full of sputum. I wasn’t in the mood to be lectured but in fairness to him he never lectured me and he made a point of me knowing this. Instead he strolled in, in his chenos and mbts, yes i said mbts. He said while combing back his hair. Your weight is your biggest problem here billy. I think he knew that i wasn’t really interested and couldn’t wait until he went so i could hop back into the bed. He then turned to one of the students. He asked ‘how many calories do you consume in a day’ the poor student, shocked and scared said 100!!! Now im no doctor or nothing but this one must be eating peanuts. The room started laughing and the poor student who was alright looking went all red. It lightened the mood. He then turned to me and said. Billy tell her. I told her that a male consumes over 3000 a day. Then o neil asks and how many did you consume yesterday. I said around 100. That brought the mood back down.

It was always something that you always knew in the back of your mind that it was a step closer to the inevitable (till the transplant) as a live for the moment laid back kinda guy. Lyn holt (freemans head transplant co ordinator) reckons I’m so laid back I’m horizontal. I always let thing fly over my head and just dealt with it. Thank god my family are the same especially Caroline, nothing fazes her. She just deals with the here and now. As one wise friend of mine said. I’m the author of my own life, mistakes I make can not be erased only a new chapter written.