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The diarrhoea I suffered whilst taking Sutent has now been replaced by constipation - due to the codeine I am taking.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'
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12 comments:
Dear Jane, Thank goodness you are feeling a bitty better.
It makes me so angry when I read of the antics of these committee members...helping the public???
much love sybil xx
Some of them were very unprofessional at times Sybil. I retained my dignity though and managed to refrain from doing what I really wanted to do - go over and slap their silly smug faces !!
Jane so glad you are feeling a little better,was good to see you had writen this am.I am certain that your awsome Dr P will have a plan for you, what an inspiration you are, it is hard to believe that peopkle can ban drugs that can extend and improve quality of life, is there any thing we can do???stay7 positive and we have hopes and prayers for Thursday
not been reading journals so didnt even know you were feeling bad.im sorry hun.hope the lactolose does the trick.bloody codeine has that effect.he said.lol.take care,love mort xx
Glad you are feeling better
Glad you are feeling better. Good thoughts coming your way.
I am glad you are feeling a bit better ~ hope that continues ~ Ally x
Hi Jane so glad to see you back on here!
I suffer too from codeine side effects always use senna, lactulose is pretty hopeless and tastes awful!
Keep fighting there's a lot of us in the ring with you doing just that!
all the best for Thursday!
Jackie (sutent user on cycle 4 and it's working! )
Soooo happy to hear you are feeling much better.....! You are going to do just great!!!
Take care,
Deb
glad you are doing better..I wish you all the best at the DR's...
Jane,
Haven't been around for a while, and was sorry to hear that you had to discontinue to Sutent. I'm glad though that things are settling down, and wish you well with the NICE appeal. Keep well.
It made me furious when I read of the smug looks of the committee members. I've seen a similar look on the face of a member of the PCT when fighting for Sutent for my father. Who exactly do these people think they are? Do they not realise they are as susceptible to cancer as the rest of us and think "there but for the grace of God.."?
I wish you all the luck in the world.
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