I am worth it

I’m guessing that if you stopped a dozen people in the street and asked them what the worst thing was that could happen to them, you’d probably get a dozen different answers – divorce, road accident, redundancy, death of a loved one, or a diagnosis of a terminal illness.

Well this is what happened to me. In October 2008 I was a freelance photographer and hours after spending a working day taking photographs to record the happiest day of one couple’s life, I was rushed into hospital  and given the ultimate bad news that I had kidney cancer, there was nothing that they could do and I may only have a short time to live. The irony was that immediately after the wedding I had driven down to Plymouth to look after my mother who was in the early stages of dementia, and now she was having to look after me.

I’m Paul, father of Matthew and Lisa; current partner of Emma, parents of Grace aged four; and owner of Max a mad, bouncing border collie.

Back in Birmingham, after more tests, they told me that I had Papillary Kidney Cancer, a rare form of an already rare cancer, which had already spread to my lymph nodes and lungs. There is no cure for this form of cancer but if you met me out walking the dog, you’d probably not know that there was anything wrong with me. I am also the full time carer for our daughter and as every parent knows four year olds need a lot of attention.

Is this the worst thing that could happen though?

In my case even worse is knowing that there is a drug available, which can delay the spread of the tumours, licensed for use, but I am being denied because it is not cost effective. The price on an extended life, is £3000.00 per cycle, £3000 every six weeks. The local Primary Care Trust take view that I am not worth it.

The original doctor at Derriford Hospital was, in part, wrong. There was something that they could do. In December 2008 I had a radical nephrectomy – my left kidney and the tumour attached to it was surgically removed at Heartlands Hospital. I then passed into the care of oncologist Dr Anjali Zarkar, who prescribed Interferon and then Sutent when it became available. After more tests we had to concede that both of these drugs had been defeated by this very rare cancer.

Dr Zarkar wants to use a new drug called Afinitor, also known as Everolimus. It’s a second line drug for treating kidney cancer, and has proven results. But it’s expensive. To be able to take this drug, you must apply to the Primary Care Trust (PCT), and make a case. The PCT have decided I am not sufficiently exceptional to be cost effective.

We are appealing against this decision. This is a long winded exercise, amazing as that seems when time is of the essence, but at meeting with my consultant last week she intimated that the answer would still be no.

  We don’t often have chance to do something as wonderful as helping to prolong a life. But today, for however long, the greatest gift for me is time.

Your donation can help stop the cancer from progressing, until I see Grace to her 5^th birthday in October, maybe through junior school – giving life, by making possible the little events that mean everything.

Every week is precious: please stand with me, and state clearly to those who decide whether we live: cancer patients’ lives are worth it.

I need to raise an initial £9000  could you please help  keep this little family together. We are all worth it. 

 And as the Tesco advert goes “every little helps”

If you would like to donate please click on the Donations Page link

You can also read my diary to see how I’m getting on.