I'm feeling a bit better. The pain killers, after a bit of tweaking, are working well and I'm managing to hobble around the house with the aid of my nice, shiny, new zimmer (complete with bell). I still have to crawl upstairs on my hands and knees, and come down on my bottom like a toddler, but just being able to move about has made a big difference. The combination of Co-codamol and Oramorph makes me feel nice and warm and fuzzy during the day and helps me sleep at night and fortunately the nausea has gone.
The diarrhoea I suffered whilst taking Sutent has now been replaced by constipation - due to the codeine I am taking. So instead of racing to the loo (which I couldn't do now anyway) I now spend ages just sitting and waiting...and waiting. I just can't win in the loo stakes can I? I'm getting some Lactulose today which should sort that particular problem out.
So I'm feeling much more positive and ready for whatever Dr P. has lined up for me on Thursday - if he is allowed to have anything lined up that is.
Which brings me back to the NICE appeal which was held on Monday. The appeal was against NICE's decision to refuse funding for 3 kc drugs - Nexavar, Torisel and Avastin and for the use of Sutent as a second line drug.
I have been advised that to write in detail about the appeal prior to the results being published could be detrimental to any future appeals we may wish to make. So I shall wait. But when the time is right I WILL write about it. Especially about the insensitive remarks made and the inappropriate behaviour (giggling together and smug smirks) of a couple of members of the Appraisal board.
So instead I will leave you with the words of the other kc patient to speak at the appeal, David.
'I used to think that being given a terminal diagnosis was the worst possible news I could receive. I was wrong. Being told I have a terminal illness, however there are licensed, effective drugs which could extend my life - but I cant have them.
THAT is the worst possible news'