Hi Shelydiane

I had the same sort of problem with my Alex. He also refused to travel to a hospital better known for its focus on cancer which was an hour away or get a second opinion, saying that he trusted the doctors he had.

It just seems to be their way to cope and you can't change it. I often wondered if Alex was so overloaded with everything that even small changes to the routine (even future ones) was just too much for him and he reacted with attitude which I can only describe as petulance.

Alex is normally a very gentle soul who considers his responses before opening his mouth and we almost never argue. During treatment it was a different story... Even things like the way I drive became cause for Alex to snipe. He doesn't know how close he came to being dropped off on the side of the road . I can laugh about it now, but at the time I would lie in bed wondering if I was going to make it through (let alone him)

All you can do is come to terms with it yourself and get on with making the best use of what you have.

The only other suggestion I have would be to get his doctors to talk to him about issues you feel are impacting on his current or future health. I enlisted the help of the co-ordinator who spoke to the doctor who then spoke to Alex on a fairly regular basis. It didn't work all the time (he still ended up in hospital with malnutrition and dehydration) but it was usually more successful than just me saying it.

PS Alex is doing great 3 years out, and our relationship has returned to better than normal.