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John Coll: My father will fight the bureaucrats just like he has fought cancer

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Thursday 13 August 2009 00:00 BST
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My father has always been a fan of boxing – but has never been into the ring, has never been in a fight like this one: against an opponent who you can't always know for sure and who can surprise you. A fight where you can find yourself winning a round and feeling good, and then find yourself knocked on to the floor but with no alternative but to rally and return to the fight.

But my father has been in one of those scraps for the last three years and it is a fight that continues. In 2006, he was diagnosed with cirrhosis of the liver and he's since heeded all the plentiful advice, no alcohol, no this, no that... he's recovering from it.

Then late onset diabetes, with its daily ups and downs until you can manage, your body can read it: your intuition becomes more pronounced, you can see the punches coming. It is a remarkable thing that all sufferers come to manage this condition so adroitly not just my father.

Then a hip replacement, recovering now, no walking sticks anymore, it's just a question of being confident in yourself to manage and cope pull yourself together and show your opponent you are not scared.

Then fluid retention, that was a bit obvious, and we can deal with that, but in analysing that punch they spotted the potential haymaker. Yes, cancer.

But there is a new drug, Sorafenib (brand name Nexavar), made by Bayer that has been prescribed by the medical team treating him. It would do the exact task that is required. The cancer has been found quite early, he leads an active life, there are no nurses, no visits to home by doctors – he could live an active and full life for years with this treatment.

But it is not approved by the National Institute for Health and Clinical Excellence. They said no. They said they were sorry, but they said no. The sorry bit doesn't help. Not really, not when it's your father and he has done so much for so long. Selfishly we want him to stay with us, to spend time with his grandchildren, to spend time with us, to spend time with his wife, my mum. It is so easy to forget the suffering and the difficulties and the worries and concerns of the person who is well but oh so very close.

This is an extract from the author's blog at Independent Minds. You can start your own blog at independent.co.uk/independentminds

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