Thursday, 4 September 2008

Beyond worth....

 

A lot of fellow patients, further down the 'Sutent path' than I, have told me that the side effects of sore mouth/hands/feet wear off after a few cycles.  And its true, for me anyway.  Im now in cycle 5 and my mouth, hands and feet are much improved.  The upset tummy/bloated/tiredness is the same but maybe Im getting used to this now as Ive found this month quite tolerable.

The 'horn' on my head is almost flat now, the lumps under my arm pit are definitely no bigger and Ive had no pain from it at all for several weeks.  And most importantly I feel well - and I look well.  So all in all things are going well - I think !  I shall have to wait for my next CT scan, due any day, for confirmation of this.

The battle against NICE and its appalling preliminary report continues.  The press, media and public support is as strong as ever and the story is still being reported.  Which is so important, we cant afford to allow this to be dropped, especially when NICE are publishing blatantly false information.

I would like to grab one of the 'suits' from this government body by his scrawny neck and drag him home to meet my family.  To meet my husband and my children.  To see how happy we are and how invaluable this 'extra time' I have been given is.  I would like him to explain to Edward, my little ray of sunshine, who refuses to be upset about the future while Mum is here and well and able to do things, why other Mums and Dads wont be given this chance.

I would like him to explain to all of us how this decision was reached based on a flawed formulae and false information.

I would like him to tell me to my face that Sutent only improves life expectancy by a 'few weeks' and the quality of that life is poor (as one ill informed member of NICE stated) while he watches me chase my 3 year old grand daughter round the garden.

And then I would like to slap his silly face and tell him to stop playing God with peoples lives, and do the job he was originally employed to do - assess the EFFECTIVENESS of these drugs - properly.

NICE as a body seem to know the cost of everything - but the value of nothing.

 

9 comments:

sybilsybil45 said...

That is so so true...Everything now comes down to cost to hell with everything else.  I wonder when all this money money culture started was it when everyone was encouraged to think od SELF first...how much I can get, how much will it effect ME I WANT I wiLL HAVE...what a state we wre in.  I do wish someone on the Nice board could read your wonderful journal and then they would see what the real truth of the matter is....but I bet they would still find an answer....
I am off to Kingston on Thames today as our last minister has moved to New Molden and her induction is this weekend so we are going to support her she was so wonderful with us.  The weather forecast is dreadful at the moment it is absolutley chucking it down and it's windy into the bargain..Not good for driving up the M4!!!  ner mind no doubt I will get there if I don't get lost !   Keep Smiling,
Much love as always   Sybil xx

http://journals.aol.co.uk/sybilsybil45/villagelife/

ukgal36 said...

Just poppin in to say hi and a wave from Florida!
Lyn
http://journals.aol.com/ukgal36/Britsblog/

shrbrisc said...

sending you hugs and prayers
hugs
Sherry

jeadie05 said...

I am sick of the NHS being run as a business ,and not a caring place anymore ..love Jan xx

helmswondermom said...

I'm so glad the side effects wear off, and I'm happy to hear that you are still doing well.
Lori

pharmolo said...

There are no windows in an ivory tower...

lynnandkeith55 said...

And also, what they (the government) have to consider, and I don't know if this will make any sense coming from an ordinary 'joanne Bloggs' on the street (me) that when things like this happen it makes people less likely to want to give their cash to charities, because the reason we do give money is exactly for things like this, and when they put a stop on people benefitting from drugs like this all it does is make you think, well we've given to chairty, they've finally found a drug that actually does something positive, but they are not allowing the majority of people to have it, so what's the point?  Negative I know, but also in my opinon true.
I'm glad you're feeling so well, wonderful
x Lynbo x

mortonlake said...

this entry should be sent to every member of  not NICE    so they can maybe realise their decisions have a human side        as well as a financial one, which is all that is loooked at.glad you continue to improve jane,as always in my thoughts,take care love mort xxxxx

funnyface0s0 said...

Hi Jane, i agree with Mort's comments.   Good news to hear your 'swellings' are under control at the moment -long may it continue.
Big Luv - Jaynee X