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Documenting not dying since October 2013.

The 16th & 17th; So full of optimism and enthusiasm.

The 16th & 17th; So full of optimism and enthusiasm.

 The 16th of September.

Tired again. I had a sleep that wasn't terrible, but nor was it good. I think my pillow helped. I think I listened to the same podcast at least four times.

It didn't really matter, because I had to get up at quarter to seven anyway. We were leaving at eight, to go down to Elizabeth Gate of Kew Gardens to meet Christine before she started the race. On the way there, I realised I had forgotten to charge my chair up overnight so I was on dangerously low battery levels all day. Daddy thought it would be a great idea to make snarky comments about it all day, which really helped me feel better.

We couldn't get to the start in the chair because of the grass, so Christine went there on her own and we said we'd come back out approximately forty minutes after she started so we could see her. We went into The Orangery café where we were meeting Peter and Sophie with the twins for breakfast. They are so big now! But they are still small enough to enjoy peekaboo and playing with giant adult hands. Henry also enjoys a good leg-squidge but Grace finds it less amusing. She is just too relaxed to show you that she's excited about much.

Pete suddenly realised that Christine was going to appear soon, so we hot-footed it out and only he and Mommy actually saw her in the crowd! After that, we decided to make our way to the finish line, which was also the same direction as back to Peter and Sophie's house. On the way we saw lots of nice bits of Kew and many good dogs, and I kept looking at the chair battery indicator and thinking "fuuuuuck". We split up so they could go home and put the babies down for a nap (which they needed - Henry was getting a bit screamy and grumbly) and we carried on round to the finish line. Thankfully the wheelchair did get us all the way there, and we saw Christine get to the finish. We did lots of clapping and cheering, then we found her afterwards and had to bomb it down the road back to the hotel so we checked out by twelve. We then took Christine back to her flat so she could shower and change, then we went to The Marlborough in Richmond for lunch. It was super busy and I don't think they were prepared, so the service wasn't great but boy, the Yorkshire puddings were enormous. Frankly, the entire portions were vast - what kind of beast can eat half a chicken in one go? And then a pudding? I was quite gutted that I couldn't fit one in because they looked delicious.

We got out at about half three, and I got a coffee from the café next door because oh god I needed caffeine. Took Christine home, then drove back to Birmingham, listening to the conclusion of the Richard Kuklinski story. Disappointing.


The 17th of September.

Today has contained ups and downs, all of which occurred after I left the house. This morning was absolutely fine - no complaints there. But my trip to London was absolutely filled with peaks and troughs.

The train journey down was lovely. Peak. I listened to the new episode of My Dad Wrote A Porno, stifling snorts along the way, then the new Grace Petrie album which was just a delight. We arrived at Euston five minutes early, and apparently means that the assistance people don't have to make an effort to come and get you. Trough. I sat on the train for five minutes, which is how long they say it should be before you can consider them late, and no one came. I was about to ring the desk, but then a random member of staff appeared so I asked him to help me. He got the ramp, so I got off and headed up to the office to find out where they'd been. By this time it had been nearly ten minutes, and I'd seen no sign of anyone coming to get me, so I was quite ticked off. When I got there, they said that because the train was early, they weren't late for me, the man was just about to go for me, but I really don't think that is a legitimate argument. I told them I wasn't impressed, and flounced out.

I got a cab at the rank straight away, and had one of the great taxi drivers who is genuinely interested in you and actually has a conversation instead of just one that enforces opinions on you. Peak. He was fascinated to learn about stem cells and my weird body, and he told me about his cat who uses his hand as a pillow to rest her little head and paw on when she sleeps. So cute. He dropped me off at Borough Market, where I had planned on getting some food before going to City Hall. I wanted to go to Konditor & Cook to get some brownies to take home and a slice of Curly Wurly cake, but the shop on Stoney Street is not wheelchair accessible, not even the pavement is. Trough. This was a recurring theme for the next hour or so, as I tried to find places to eat, which were all either closed or inaccessible. Mommy had suggested that if I got stuck, I should go to The Bridge theatre because they had nice food there and it's next to City Hall. However, I then struggled to make my way there in the chair because all the pavements were fucking disaster in terms of accessibility, Google maps didn't have a clue where I was because of all the buildings, it is not an area of London I am familiar with, and with every passing minute I just got more and more stressed. I did eventually end up in the right area, but by then it was just gone six, so I went into a bar full of business people, got myself a wine, and took it outside to sit in the sun and whinge to Mommy down to phone. I just needed to vent all my rage before going to a place which was going to be a celebration. Once I finished my drink, I drove round the corner to City Hall, where I took a couple of pictures of the river and Tower Bridge, before entering the building to go through security. That was not a problem, and I was taken up to the ninth floor by one of the young people from the Jack Petchey Foundation, the first of many I met tonight. Once in, I rang Anaily from Anthony Nolan to see where she was, but she saw me so came to introduce herself. We had a bit of a chat, then decided we should go and try to mingle. I reeled off my story more times than I could count, and gave out lots of my cards. Some people already knew about Anthony Nolan, but some had no idea so Anaily and I explained what we do, and they were very positive about it. That was the overwhelming feeling of the night - everyone there was so full of optimism and enthusiasm and they just want to do good things, and it was definitely the high point of the day. I had such a lovely time. I spoke a bit with Sir Jack and members of his family, who were all very happy to see people from Anthony Nolan (his son had a stem cell transplant but unfortunately died from complications afterwards) and it was great for me to be able to thank them for their contributions to us. There was a presentation from various people in the organisation, plus speeches from the Deputy Mayor and two young people who the foundation has really helped, some young drama students did a seven minute potted performance of his life story, and Ruti who won The Voice even talked a bit because she was helped by the foundation a lot (before she did The Voice). I talked with her a bit and we had a selfie because I am embarrassing but she was great, and I think you should all get her album when it comes out next year.

The event was supposed to finish at half past eight, but it kind of went on a little bit, and when it was nearly nine o'clock I was like I really have to leave because my train was at quarter to ten and it was going to take about half an hour to get back to Euston. Thankfully I got a taxi speedily, then I just had to deal with the stress of Virgin texting me going YOUR TRAIN IS HERE and me thinking I AM NOT THERE YET. I arrived at the station with about ten minutes to spare, and I was grateful that there had been a shift change at assistance so I was helped by someone who I had not yelled at earlier. I got on the train about three minutes before it left. Exhale.

Daddy picked me up at New Street, and back at home I finally had some dinner of a toasted teacake before pootling up to bed. Then we had our final trough of the day, when I was just about to get into bed, I saw a massive fuck off spider just hanging out by the doorframe, so I had to go and wake up a parent to deal with it. Jesus Christ.

The 18th & 19th; So lazy.

The 18th & 19th; So lazy.

The 14th & 15th; Staring at squares on the carpet.

The 14th & 15th; Staring at squares on the carpet.