First of all I spent over a week trying to get in touch with my doctor to get an appointment to renew my medication. Yesterday when I phoned in I got a message from the receptionist that I was to stop taking it.
Actually, it's a big deal. The failure of this last medication means the next step is Chemotherapy and it needed some discussion before.
Also it really is the last option, so it mattered.
Obviously I knew it was going to happen sooner or later because my bloods had been so bad last week.
Then as that was sinking in I had a call from Charing Cross asking me why I wasn't there for my operation.
That came as a bit of a shock because no one had told me about it. I need it doing quite urgently and as a result it didn't get done. Also someone else could have had an operation in that slot.
I was completely fed up by the end of that morning only 'fed up' doesn't really do it justice.
So this is by way of a celebration of the NHS and a demonstration of how good it is when it works.
In 2013 I'd exhausted all the (then) conventional treatments but Dr Feelgood had kept me going long enough for another drug to become available which until then had only been given after Chemo.
Where nothing had ever worked this worked like a dream for me.
No side effects (had lots of those) and later we discovered that it had shrunk my tumours away.
It was never going to be a cure; the median survival rate for this drug used to be four months - that means that 50% of patients got an extra four months.
I got just short of 24 months and apart from the little matter of a broken back, I was fit and well to live life in that time.
Of course, most people get years longer than I did but this kind of won me back some time I'd missed out on.
It meant so much to me that I kept all the empty containers and here they are all laid out on the front path;
Each one represents 28 days of extra life.
I should also add that each pot would have cost me about £3280.
So, 24 months is equal to £78,720. I hope you think it was worth it. I tried to use the time well.
There are two points;
1) The NHS used its reputation and buying power to get the drug company to reduce the price it pays for the drug - possibly by half.
2) I paid a lot of taxes over my lifetime and won't be getting the medical help and all the pensions that everyone else will be claiming.
All the same it's a big deal - all that money spent without any questions asked.
A decision taken just on the basis of medical need rather than ability to pay.
That's why the NHS matters so much although yesterday I had to go to the trouble of setting out those 24 empty pots on the front path just to remind myself.
Neil Harris
(a don't stop till you drop production)
Contact me: neilwithpromisestokeep@gmail.com
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