The 13th & 14th; “Sorry. You just have to go home and die.”

July 19, 2016 — Leave a comment

The 13th of July. 

Today has mainly revolved around writing about yesterday and putting in eye drops/using the cooling eye mask. My eye is marginally better but definitely no make up today. I think it will be okay by Friday.

There was so much to write about yesterday that it has honestly been my only activity of the day. I stopped to eat lunch, and for us to go out to liver clinic. My appointment was half past two, and I didn’t get to see James until just before four. He’s too popular! But in the meantime, we talked with Kirsty, Monica and Philippa. Monica got slightly teased about being on tv but it was all out of love. 

When we finally heard my name called, the first thing James brought up was the most recent letter from Andy Toogood. It’s so recent, it was only written on Monday and we haven’t actually had it yet. It seems that my x-ray has at long last been reported on, and it is not good news! It shows a “marked degenerative change” in my lower spine. He has discussed it with his colleague, Mr. Harland, a spinal neurosurgeon, who wants an MRI and to see me in his clinic, so I’ll get some other letters too. And maybe I’ll have spinal surgery. 

From a liver point of view, all my tests are really great and boring, so he couldn’t be happier! Back in six months, when he will have another new baby to show me pictures of!

At home, I have been scribbling away. Finished just before dinner, and now I have to complete my talk for Friday so I can email some notes to Ian tomorrow!

The 14th of July. 

My eye is improving. I can tolerate light now, for the most part, hoping I will be capable of wearing mascara tomorrow. 

I spent my morning writing up my notes to send to Ian and Anneliese from Anthony Nolan so they know what I’m planning on saying, and I had to find the original versions of some photos of me having my transplants, because the ones I had were not of reasonable quality. 

Speaking of transplants, I learned today that NHS England is no longer going to be routinely funding second stem cell transplants for those that need them. They are, apparently, unaffordable. What is affordable is a prosthetic penis if you have erectile dysfunction. If your cancer comes back and you need a second stem cell transplant? No, sorry, your life is not worth saving. If that had been the case in 2008, I would have been told the same thing as my grandmother sixty years ago – “Sorry. You just have to go home and die.” How can that be the case? That advances in science makes these treatments cheaper and our knowledge means we can perform them better, but now we can’t afford to save the lives of the very people that donor drives and research is being done for? I accept that I am now unfixable, but that is because my body is simply not up to it. If I were being told that there was a good chance I’d be alright if I had a particular treatment, but I wasn’t worth the money it would cost, I would feel very differently. We spend millions and millions of pounds treating self-inflicted diseases, smoking and drinking, but we can’t pay for people who have had no part in their life-threatening illness to have a second chance. I don’t understand. I don’t want to. 

What I want is to change it. I don’t accept it. With Anthony Nolan’s support, I will not be letting this go. If we spent the amount of our GDP on the NHS that Germany does, we could vastly increase its budget. Even Portugal, whose economy is not looking fabulous, spend more than we do. The government continue to bang on about how well the economy is doing, but they keep cutting away at health and social care, two sectors that desperately need each other, and the system is just going to break under the strain, and soon. We might have a new Prime Minister, but Jeremy Hunt is still in charge of the service with which we entrust our lives. I cannot just worry about this. I need to do something. 

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