The 20th of September.
I am knackered and in such ferocious pain that I am walking around bent over at a right angle but I have had the bloody loveliest day.
I got up at eight because my brain was too excited to sleep any longer, and that meant I had time to watch last night’s Bake Off before going out at eleven to catch my train to London.
The journey was largely uneventful, but I was kept amused by the man sitting diagonally opposite me who was greatly enjoying Game of Thrones on his laptop. Then, in a true miracle, a man appeared with the ramp within a couple of minutes of us arriving at Euston! I was really quite shocked.
I got a cab from there straight to Paternoster Square, to see the Make Blood Cancer Visible installation. All the names of patients, with their particular type of blood cancer, age and story attached. I roamed around, looking for somebody with AML. It would have been nice to come across a young person, but the only two I found were 62 and 77. I couldn’t really relate. Still, I saw three chaps standing around with a camera and talking, so I went over to see if they were involved in the campaign. They weren’t, they were just interested in photographing it, so then I introduced myself and explained what it was all about. They told me I was very brave, and it was good to see me battling on. I am indeed a soldier. But on the subject of invisible diseases, one of the men mentioned that his wife has an inner ear balance condition, and I said “Oh, Meniere’s?” to which he was very surprised because he’s never met anyone who knew what it was before. She has had the steroid injections in the ear which Daddy is about to have and found them very helpful so that’s promising.
I left them to carry on, and bought myself some lunch from Paul which I ate in the square while listening to a podcast.
After that, I hadn’t got anything else planned for the rest of the afternoon and had plenty of time to kill, so I took myself to Konditor and Cook in The Gherkin for some Curly Wurly cake and my fourth coffee of the day. It wasn’t very far, and it was quite easy to navigate a path because I just had to go in the direction of the very tall buildings. Easy. I also bought two brownies because I can’t not, when presented with the opportunity. They are bloody delicious.
About four o’clock, I decided it was time to go to the hotel, so I got another taxi over to The RE Shoreditch, where Mommy and I stayed when we went to watch Christine do her run in Victoria Park.
I checked in, and the duty manager got called over because I am disabled. They asked if I wanted to switch to a room with an accessible bathroom but I explained that wasn’t necessary, as long as I could get in the room in my chair. Then I had to read a letter explaining what to do in a fire and sign a form to prove I had received it. All that was left was to pay and my heart beat so quickly as I waited for the machine to confirm my payment because Nationwide have a nasty habit of not allowing large purchases to go through because they are really over-zealous and it causes me no end of problems. Thankfully, it worked and I was hugely relieved.
I spent the next couple of hours talking to Mommy on the phone, unpacking bits and pieces, and making sure everything was ready for when I returned, ready to crawl into bed.
Amusical was to start at half seven and I wanted to give myself a bit of buffering time to eat something before going in, so when I arrived I ordered a bowl of chips and a glass of wine because that’s the kind of responsible adult I am.
The only really wheelchair accessible space was right next to the stage/sound desk, so I had a great view, particularly of all Jayde’s incredible costume changes. They opened with Jayde and Kiri performing a heart-rending rendition of Come What May from Moulin Rouge, and Jayde can really bloody sing! Our first act was Brennan Reece, singing Waving Through A Window from Dear Evan Hansen, which I didn’t know but it was lovely and I am downloading it now. He was really good as well! Next, we had Tiff Stevenson singing Don’t Cry For Me Argentina from Evita, absolutely class. Short interval, during which I had a chat with the father of the musical director who was a big fan of my wheelchair. Next up was Alex Zane, who’d really committed by dressing up as Mary Poppins and singing Supercalifragilisticexpialidocious, including hat changes for the different characters. It was during his song that my hands began to hurt from clapping. Fourth was Evelyn Mok, singing Memory from Cats, in a leopard-print onesie and checking the lyrics on her phone. Another interval, and I was joined by Tiff and her boyfriend, so we got to catch up a bit before the final section. In that, we were given Spencer Jones singing Reviewing the Situation from Oliver, accompanied by the guy who’d been on the sound desk suddenly playing the violin brilliantly, and he was really excellent. And his encore song was going to be You Give A Little Love from Bugsy Malone, so he had to win. Finally, we had an enormous group singalong of Do You Hear The People Sing? from Les Mis and it was incredibly rousing.
The bar didn’t close, so I stayed for a while, having chats, until it got to about midnight, and Kiri walked with me up to Oval Space so I could poke my head in at Dean’s night before going round the corner to my hotel. When I arrived, I just hoped Adam and Amy were still there, and thankfully Adam spotted me pretty quickly so I wasn’t alone for long. We had a nice talk, then Amy and Elliot came down and we had a singalong to some incredible tunes that were perfect for the night. We were all really tired by this point, and there was some dry ice or something that was affecting my lungs, so I left about quarter to one and was so glad my hotel was just minutes away. When I got out of my chair, I was pretty much bent double with pain and my eyes absolutely killed. So happy to be able to get into bed.
The 21st of September.
I had a fucking terrible night. The only good part was the pillows. I started trying to settle down to sleep about two, but I didn’t drop off. I got through two podcasts, I remember looking at my phone and it being half past four, I kept hearing people outside my room, and every time I moved, my back protested heavily. I got up at eight, doubled over in pain. It was no worse than being in bed.
I got myself dressed and packed up, thankfully not much to put away, and was checked out by quarter past nine.
Needed breakfast, and I wasn’t far from Rinkoff’s, so I had to get some pastries. I had an enormous cinnamon swirl (only appropriate after Dean’s event last night) and very hot coffee, which I got through while taking in my surroundings. My two favourite customers were the man who came in whose water had gone off so he filled up two enormous bottles and a jerry can, and a guy who wanted a sandwich with only green olives in it. Bizarre.
To take away, I bought two crodoughs – one toffee apple crumble, one chocolate, plus three rainbow bagels and a mini challah. Then I got a cab to take me to the Wellcome Collection, where I was meeting Hannah, a fellow transplant patient for coffee. I got a flat white and some orange juice so I could take my tablets, then started writing a blog post while I waited for her to arrive.
When she did, there wasn’t really any stopping us talking, we just had so much in common. There aren’t many transplant patients my age that I come across so it’s lovely when you can sit down with someone who can empathise with all the stupid problems you have. It was a shame we only had just over an hour, but next time we will have longer.
I wanted to get some kind of green juice from Pret, because my diet had been terrible for the past couple of days, and when I went to pay, the very nice man serving said he’d get it for me, so it was free! Bless him. Then, at the assistance office, they sent me straight down to the platform, and I was on the train with plenty of time to spare. Phew.
Mommy was there at New Street to pick me up, and I got changed into some jogging bottoms and fluffy socks in the back of the car. We had to collect Alison from school on the way home, and that was terrible because it was hometime, so the roads round there were really busy and all I just wanted to get into bed.
When we eventually got home, it was about four, and I hadn’t eaten since my cinnamon swirl, so Mommy made me a boiled egg and soldiers and I curled up in my armchair. Finally I can rest. Until the next early start tomorrow.