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Documenting not dying since October 2013.

The 25th & 26th; What gives him the right to extinguish the last remaining hopes of people already going through more than he ever has.

The 25th & 26th; What gives him the right to extinguish the last remaining hopes of people already going through more than he ever has.

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The 25th of July.  Well, I have some drugs. Not the ones I hoped for, but I have to try these first before I can get anything stronger. 

We rang up first thing this morning, and when Jo, the clinical nurse specialist we spoke to, rang back, she said to come in at 1pm to see a doctor. I then kept writing about Saturday until 11, when we went into town before going to hospital. 

I desperately needed to replace the ballet pumps I've been wearing - they are nearly ten years old and literally falling to bits. Topshop didn't have a pair in my size, so I went to New Look, where I ended up getting the same ones in three different colours. Sorry Phillip Green, none of my cash for you. I also picked up some trivial stuff like moisturiser and birthday cards, then lunch from Pret which we ate in the QE car park. 

Up on 621, I waited over an hour for the doctor to appear. That was fine because I'd taken my diary so I could finish my writing. I got that done, then twiddled my thumbs and listened to music until I was called.

We had a chat, and she did some poking although to be honest that doesn't really make it any more obvious where the pain is; it's not muscular so it's not tender. Just constant ache, made worse when I move at all. The strongest drugs she could prescribe were slow release double strength Tramadol, so I have to take that twice a day for a few days and see if it makes a difference. I'm honestly not expecting it to, but we'll see. 

We had to wait in pharmacy for ages because there was a palaver over the fact that it's a controlled drug, but we were able to leave at about half three. When we got home, the kittens were ravenous, practically chewing my arm off. I did apologise profusely but they don't care. They got food; they're happy. 

Tonight, I'm trying to get the video I made yesterday seen. It's on YouTube, Facebook, Twitter and instagram, and I am begging everyone to share it with their followers. I want Jeremy Hunt to explain why he's arbitrarily chosen this group of people who apparently deserve to die. Why he's basing this decision on research that is 20 years old and has no plans to use current data or get any more, despite us constantly improving the science behind the transplants. Why he feels prosthetic penises are more important than the lives of people with cancer. What gives him the right to extinguish the last remaining hopes of people already going through more than he ever has. It is a privilege to be the health secretary yet he treats it like a game, and he gets to play God. 

The 26th of July. 

Terrible night. I barely slept at all for no discernible reason. The pain wasn't unbearable for once, I wasn't too hot, my brain just wouldn't go to sleep. In the end, I started watching Stranger Things on Netflix and I am gripped. Loving it so far. 

I got up just before nine, and washed my hair for the first time since it was dyed. I wouldn't mention it, but it had a slightly alarming effect. Because the colour is so vibrant, the water and shampoo made the dye run, and when I had dried my hair, Mommy noticed that most of the back of my neck had been stained pink. I was really glad James had let me in on the tip of milk being a great stain remover. Worked like a charm!

My day has been talking and writing. I got an email from a journalist from the Birmingham Mail wanting to talk about my video, excellent! Before I got back to her, I spoke to Simon at Anthony Nolan to make sure I had all the points I needed to cover. The writer, Anuja, rang me as soon as I replied to her, so then I talked to her and that should be in the paper very soon!

After lunch, I spent most of my afternoon uploading photos from the games on Saturday and writing because I am behind again. I'm not quite finished because I then got another interview request but it was email questions, so I stopped the blog-writing to answer them all in probably far too many words. I suspect I will be edited considerably. 

I am so tired. Sleep tonight please. 

The video is here, please watch it and share it with your friends.

The 27th & 28th; I could just feel the tears in my face and couldn't speak for rage.

The 27th & 28th; I could just feel the tears in my face and couldn't speak for rage.

The 23rd & 24th; I need this decision to change.

The 23rd & 24th; I need this decision to change.