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Documenting not dying since October 2013.

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 agonising. But that is because of all I've done (or not done) today so let's rewind back to the beginning.

Meant to get up at five but woke up half 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 annoyed because the station staff wouldn't let him through the barriers because he didn't have a ticket. This was because he'd been out all night and lost his friends, phone and 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 a phone number to get an outside line on the office phone 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 to be 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, so I wrote down my name and number but I am not expecting him to text me. I don't suppose he'll even know what it's for. He'll probably think he's pulled or something. I just hope he got home safe.

Our journey was not very exciting. On train, had paper, listened to the Ghostbusters soundtrack. Rhythm of the Night has become my jam since seeing the film. As we were arriving, a girl was going to the toilet and said my name. I turned to look, and it was Charlotte who I met on a TCT trip - she has a brain tumour, but she's kind of okay? She's getting married, so she's not feeling any sense of doom about the future. She and her fiancé were going down for an exhibition. We must meet up. I haven't seen her for ages. Euston assistance was not so good this time - a Virgin chap got the ramp for us and the man appeared as we were leaving. Sorry, too late. Be there on time.

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. We folded up the chair, so 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 sardinedom. Mmm, sweaty. I was glad our stop was only six minutes away.

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 found a horde of people going to the Olympic Park, so we waited out of the way of them to meet up with Christine. When we were stood outside John Lewis, Michael Johnson walked past and Mommy started hitting me in excitement. She was like me when I meet a comedian, bless her.

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

We were in wheelchair position seats, and had a really great view over the stadium. We were at the finish line 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 that 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 go to that 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 set off 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 most 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 just obeyed without question. Only in Britain would that system work. At several points we had to go across the flow of traffic to get to step-free access, but people were generally 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 back to the station, where there was a long queue for trains back to London. However, a member of staff came up to us and told me to 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 way back to Euston where we grabbed some food from M&S and went to see the assistance people. We had open return tickets back (even though I'm certain I booked a specific train but whatever) so I wasn't sure if they'd be able to help us. However, we were sent to a platform right away, but when we arrived, we couldn't get on the train because they hadn't been able to couple the carriages. In the end they got it fixed, 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. I don't know how else to describe it. 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 stem cell transplants now. 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 w.as 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 I liked, 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 that I want. I need it to be big. I need this decision to change. Please watch it, share it on Twitter, Facebook, show it to your friends and ask them to do the same. Click here to email your MP to ask them to write to Jeremy Hunt and ask him to intervene and reverse it.

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

The 26th & 27th; "If I die, then it means I have lived."

The 26th & 27th; "If I die, then it means I have lived."

The 24th & 25th; A girl in a chair, alone.

The 24th & 25th; A girl in a chair, alone.