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Documenting not dying since October 2013.

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

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

The 23rd of July. Wow I am in a lot of pain. A ridiculous amount. I cannot move without it and even sitting still it's there, just not quite as excruciating. But that is because of all I've done (or not done) today so let's rewind to the beginning.

Meant to get up at five but woke an hour before that. Not ideal but OH WELL, it meant I had extra time to have coffee and not get stressed. Always glad for that.

We had an interesting start in the assistance office; a guy came in and was very annoyed because the station staff wouldn't let him through the barriers because he didn't have a ticket. This was because he had been out all night and lost his friends, his phone and his wallet. All he had was his keys. He was obviously still a bit drunk because he couldn't grasp the concept of having to dial 91 before the phone number he wanted to get an outside line when trying to call his grandparents to help him. The woman dealing with him had the absolute patience of a saint. The grandparents didn't seem able to come to his aid, and he was getting more and more wound up, so in the end, I took a tenner from my purse and just gave it to him so he could buy himself a ticket. He was only going to Lichfield so it wasn't going to cost him that much but it was fine. He then wouldn't leave until I gave him some details so he could pay me back. I scribbled down my name and number but I am not expecting him to contact me. I don't suppose he'll even remember what they're for. I just hope he got home safe.

Our journey was not particularly exciting. On the train, read the paper, listened to the Ghostbusters soundtrack. Rhythm of the Night has become my jam since seeing the film. Just before we arrived, a girl was about to go to the toilet, which I am always sat next to, being in the disabled space, and she suddenly said my name. I looked round and it was Charlotte who I met when our TCT group went to the Royal Albert Hall for the comedy night a few years ago. She has a brain tumour, but from what she said, it seems to be relatively dormant. She's getting married, so I got to see her engagement ring and it is gorgeous. She and her fiancé were down for an exhibition. Must arrange to meet up with her; it's been far too long. Euston assistance was not so good this time - a Virgin chap got the ramp for me and the man appeared as we were leaving. He looked pretty irked by the fact that I was off the train without him but we waited the five minutes that he's supposed to arrive within so it is not my problem. Be on time mate.

We went up the road to St. Pancras which was full to bursting of what seemed to be school parties with suitcases, so we didn't hang around and went straight to platform 12 to get on a bullet train to Stratford International. There was some fun lift Tetris with us and two people with bicycles, but we manoeuvred ourselves successfully. We folded up the chair once on the train and Mommy stayed with it in the vestibule, and I sat with a family from Yorkshire who were going to the games too. We were lucky to get on when we did, because it filled up to the point of sardinedom. Mmm, sweaty. I was glad our trip was only going to take 6 minutes.

When we arrived at Stratford, we went over to Westfield to get ourselves some lunch. Waitrose was straight ahead, so we picked up sandwiches from there, then spotted a Bread Ahead stand! DOUGHNUTS. They had about four left, so I bought a chocolate one for me and a crème caramel one for Christine. We came across a horde of people going to the Olympic Park, so we waited out of the way of them to meet up with her. While we stood outside John Lewis, Mommy suddenly started hitting me on the arm. I didn't know what I'd done wrong, then realised it was out of excitement because Michael Johnson (four-time gold medallist and very famous sprinter/now presenter of athletics) had just walked past and she is a massive fan.  She was like me when I saw Adele in Liberty.

Christine emerged from the crowd, and we joined the mass of bodies heading for the stadium. I'd forgotten how far it is. Past the Orbit and it's terrifying-looking slide, a group of people surrounding Gabby Logan, taking photos of her doing a piece to camera (weird), and we finally found our gate.

We were in wheelchair position seats, and had a really great view over the whole stadium. We were at the finish end, facing the line itself so it was perfect for taking photos. We were also in the shade and it stayed that way all day, thankfully, as we could see the people on the opposite side in the sunshine just baking, fanning themselves all afternoon.

We began with the para-athletic events, and the day got off to a great start with Richard Whitehead breaking his own world record! Unfortunately neither Jonnie Peacock nor David Weir won their races, but hopefully they do at the Paralympics, when it actually matters. Libby Clegg got a new world record too, with a guide she's only just started running with.

There was a half hour break before the able-bodied athletes came in, so we ate our lunches and took the opportunity to use the toilets which were very close by. To kick it off, some of the big names were brought out on the backs of trucks, being driven around the track with flames being sent up to emphasise how exciting it was.

I won't list all the events we saw - there are photos. We witnessed two false starts, both by team GB athletes which was very annoying, for them and us! Poor Martin Rooney. Jess Ennis-Hill and KJT were long-jumping away, and I'm hoping I got some decent shots of them. The men's relay was a huge success, with the GB teams taking first and second place. Admittedly the Jamaicans weren't there but still, it bodes well for Rio.

The last and main event was the 5000m with Mo Farah. The first twelve-thirteen minutes are not particularly thrilling, but for the last couple of laps the crowd got louder and louder, and for the final one, everyone was on their feet, clapping and yelling at Mo to win. It was clear that he would, but to actually witness it with my own eyes, to be a part of that moment was pretty special. It was nice to feel great about this country for a minute.

Leaving was slow, to say the least. There was only one way to go, with everyone being herded like sheep in the same direction by stewards. There were even people with stop/go lollipops which everyone obeyed without question. Only in Britain would that system work. At several points we had to cut across the flow of traffic to get to step-free access, but generally most people were very accommodating. One of the great novelties of being in a wheelchair is that people will apologise to you and even break into a run for absolutely no reason.

We eventually got to the station, where there was a very long queue for trains back to London. However, a member of staff came up to us and said we could go straight to the front. Another wheelchair perk. We went down to the platform where a train was waiting and in no time at all we were away again!

At the other end, we made our return to Euston where we bought some food and went to see the assistance people. We had open return tickets back (even though I'm certain I booked a specific train but that's what the machine printed out so whatever, I'm not going to quarrel with it) so I wasn't sure if they'd be able to help us, but we were sent straight to a platform. However, when we got there, we couldn't get on the train because they hadn't been able to couple the carriages. In the end it got fixed though, we got on in coach G and were home an hour earlier than planned. Smashing.

The 24th of July.

Agony. Agony all day. I can't stand up straight. Not even in an "I can but it hurts" kind of way, in a my body physically will not do it kind of way. I can't lie flat on my back without putting my knees up. I don't walk, I waddle. It hurts all the time. It feels like my pelvis is literally crumbling inside me. Hospital tomorrow; I need some drugs.

This morning I was writing, and this afternoon, Daddy and I went to see Star Trek Beyond. Every scene with Chekov broke my heart, and there's a lot of them. It's so tragic. Plus there's a whole thread about Ambassador Spock/Leonard Nimoy's death, so a lot of it is pretty bleak. There are comedic moments too, but I'd expect nothing less with Simon Pegg as a writer. Of course there are flaws but I wasn't expecting it to be amazing, just an entertaining couple of hours and a distraction from the pain, which it was.

When we got back, I decided I wanted to make a video, to ask Jeremy Hunt why we can't afford second stem cell transplants now. I didn't feel like writing was enough - I want people to hear how passionate I am about this, to see me, and a blog post won't quite do that. First I needed to plan what I was going to say, then record it and not hate it. It took a while. I managed to write what I needed fairly easily, it was the delivery that was tricky. Looking at my notes and the camera was not easy. I had to stop so I could have dinner, then I was straight back upstairs. I finally got a set up that worked, then I just had to keep recording myself until I got it right. By ten to nine it was done, and I've sent it to Anthony Nolan before I share it. It needs to be done right to have the impact I want. I'm hoping it's going to be big. I need it to be. I will do anything to get this reversed, even if it requires being on film and hearing myself out loud, which I cannot stand. Please watch it and share it on Twitter, Facebook, anywhere you want. Get all your friends and watch it and ask them to spread it around too. Click here to email your MP with a letter asking them to write to Jeremy Hunt to ask him to intervene and change this decision.

[youtube https://www.youtube.com/watch?v=4A2w20ebgg4]

















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.

The 21st & 22nd; I can barely stand.

The 21st & 22nd; I can barely stand.