Tuesday 26 August 2014

No.69. Mixed emotions

Yesterday was full of mixed emotions , the elation of the IBC funds hitting £1,000,000 around breakfast time and then them reaching £1,650,000 + by the time I went to bed. I was thinking £2,000,000 was a real possibility by the time I woke up today and it was £2,000,000 and more, absolutely, bloody fantastic.

I also spent yesterday getting anxious about Chris having his PEG fitted today, yet another reality check in this disease's progress. I think Chris will be glad to have it done. It will take some of the fear away from eating for him. The tube will be inserted via an endoscopy tube I think and then come out through his abdomen. That will mean he will be able to take liquid feeds that way once he can no longer swallow properly, which may be sooner than we had hoped. I think they will tell us more later about how to use it. We have to be at Treliske for 10am so we will have to leave around 8.30am. 

I wonder what the IBC fund will be by the time I get home ? Chris will have to stay the night and I will pick him up tomorrow.

Having to face the reality of this disease in the here and now really does suck, imagine never being able to eat or drink orally ever again? That is the reality for most MND patients sooner or later. I heard tell of someone who would have Red Bull put down his PEG tube because it made him burp and he could then taste the bubbles. MND is so cruel. I pray to God that one day there really will be a cure for this awful disease.

BUT £2,000,000 THOUGH . A-FLIPPING -MAZING and two million thanks back :')