Thursday, March 13, 2008
UK Kidney Cancer - Passport To Cancer Drugs
I started my kidney cancer journey back in December 0f 2006, and it's a journey I wouldn't wish on others because real anxiety is hard to manage. For me I've been "lucky" I guess in that any turmoil on my part has been less physiological and more psychological. Yes I had a rather hideous radical nephrectomy back in March 2007, but there was far less pain than I'd anticipated, and I was far more concerned about the diagnosis of cancer than I was about any pain or dying on an operating table or being invalided in some way.
And then I look at others who've been inflicted with this silent killer, others who have a tougher prognosis than me i.e. Metastatic Kidney Cancer, and I see how they are coping with it all. There are some amazing people out there is all I can say, their capacity to cope should be an inspiration to others, it certainly is to me. I look at some of the stories on ACOR and on Kidney Cancer Resource, and each time it stuns me how nonchalant folks can be about their condition, almost as if it's just some minor inconvenience.
It's at times like these I realise that part of the human condition dictates that if something life changing like cancer comes along then we seem to simply re-adjust our life boundaries and expectations to match, we look for ways to push it to the back of our minds as much as possible and move on with life.
It's like some post-war Ealing comedy film pushing the "We shall overcome" mentality. "Passport To Pimlico" is what came to mind when I was thinking about how we re-adjust to the circumstances around us, not sure why it came to mind, but it's happens to be a film I love.
In a bizarre way my means of dealing with it has been to completely immerse myself in Kidney Cancer by using the technical computing skills to help others in the same situation. It's really odd, but if someone asks about my next scan, or what my prognosis is then I move the conversation on as quickly as I can and try and change the subject. Totally bonkers given I spend so much of my non-working time on a site that's pretty much 100% dedicated to Kidney Cancer, but somehow it works. This seems to be part of my re-adjustment.
That's not to say that people don't have their ups and downs with this disease, it's a pretty relentless thing, but there always seems to be that underlying thread of bravery that says ..."Come on, do your worst!!"
I can't help admiring that.
And then we have our UK NHS, which in principal is a wonderful thing. "Free treatment when you need it" is one of the mantras. The reality is somewhat different i.e. "Free Treatment only if it's cost effective enough and you live in the right part of the country". You'd think that with all the natural anxiety, emotional turmoil and physical symptoms that a Metastatic kidney Cancer patient has to go through that the NHS would bend over backwards to alleviate that and stick by it's mission statement. What is even more irksome is your right to drugs is dependant on what part of the county you live, it's so ridiculously unfair.
Which leads nicely back to "Passport To Pimlico" where the community of Pimlico is ring-fenced by the government because some ancient law dictates that Pimlico is no longer part of Great Britain, all their rights as UK citizens are revoked and they are left to fend for themselves with no food, water or utilities... The usual Ealing comedy chaos ensues. And yet inches away in Chelsea or Brompton life goes on as usual with all citizenship rights in tact. Basically bureaucracy gone mad, and made plain for all to see and laugh at.
It maybe a poor analogy but it's the same with Sutent in the UK, because NICE have yet to approve the drug officially it gives the local PCTs an excuse to deny it to patients on the grounds that it's not "Cost Effective". So if you live in one area of the country you maybe lucky, others you won't. How on earth anyone can think that this is fair is beyond my comprehension
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