Topic: Anthony died on 30th July in a London Hospice
My darling husband died from this awful disease nearly four weeks ago. He was so brave and he fought so hard. We thought he had much longer, he was doing so well and he wanted so much to live. He was only 64 and we had so many plans of things we were going to do together. He was about to start a really promising phase 1 trial that I had posted about on this site and we were so positive as we had been throughout his battle but he started to get pain and within a few weeks he died. During those last few weeks the doctors told me he wasn't in the final stages and I wondered why he was so restless and agitated, especially at night.
In the last 2 weeks we were together night and day. He went into the hospice, not as a terminal patient, but to sort out his pain medication and I stayed in his room with him. He wanted me to be there all the time and I wanted to be with him. I became exhausted through lack of sleep. Tony could only sleep for short periods and would call for me every few minutes. Only on the day he died did they realise he was in the final phase. They told me he had 3-5 days and later revised it to 2-3 days but he died 4 hours later. I was with him and so was our daughter who is also devastated. I am so glad he didn't take a long time to go through those terrible breathing phases but I am so devastated that the doctors didn't recognise that he was dying sooner because I would have wanted him to be sedated and he needn't have suffered so much pain and agitation. I so much want to change those last few weeks. I want them to have been peaceful and easier for him. I think he deserved that . He was such a wonderful man- a great leader and educator who always fought to help others and never himself. Even in hospital he was always more concerned about the doctors and nurses careers, work loads etc.
I miss him so much now that life is unbearable and I can't see a perspective any more. We are not religious. We always talked about every thing and we were always together. I need to talk to him about this and to tell him how much I miss him and how tormented I am about those last few weeks. Instead all I can do is feel such unbearable pain and sadness.
What a terrible disease. Perhaps I will try to help others with cc in some way if I can.