The 2nd & 3rd; I am the least murderous person I know.
The 2nd of July.
I am a sleepy puffin this evening. I woke up at half past six, but I did manage to go back to sleep until nine. That was good, but it means I'll probably be awake at half past four again tomorrow. All the caffeine for me.
I've been really careful with my eyes today, and at the moment (touch wood) I am not in any pain. This morning I was at the chiro and I kept my sunglasses on until I got inside, where it wasn't so bright that I was affected. I took my eye drops in with me in case I started having problems, but it stayed calm. I had a couple of neck issues that Trine had to deal with, but that was all!
When we got back, we had lunch, then washed my hair. I had a rummage through some shoeboxes to find a pair that I think I might wear tomorrow. It's them, or a pair of sandals, so I have painted my toenails just in case. Sorted out my handbag (i.e, thrown out a lot of crap that was in there) and I have printed out my invitation so I think I'm pretty organised for tomorrow. I have my list for the morning, just in case.
This is just the worst time for my body to misbehave. I suppose I should just be grateful that I don't have a chest infection as well!
The 3rd of July.
First of all, I'm incredibly happy to report that my eye has behaved itself today. I've done all the drops (except one dose which would have been right in the middle of the event) and even by the end of the day, I didn't need to take off my eye make up or put in any Lacrilube. Phew.
Had a slightly worrying start to the day when the assistance people at New Street didn't have my return train booking in their list, but when I arrived at Euston, they'd got me down and were expecting me, so I didn't need to panic.
I planned on having a leisurely bimble down Tottenham Court Road/Charing Cross Road/Whitehall to Parliament for the APPG on Stem Cell Transplantation Summer Reception, stopping here and there in places I have wanted to visit. My first stop was Konditor & Cook on Goodge Street, who had a little ramp so I could get inside, and I had a very nutritious lunch of a slice of Curly Wurly cake and a flat white, which I ate while listening to an incredibly posh woman talk about how she'd had to sack her terrible maid and gardener. Such good entertainment! And I obviously bought some brownies to take home - a Curly Wurly, a triple chocolate, a fudgepacker (they've had to change the name to salted caramel because some people found it offensive but I refuse) and a pride one. So much chocolatey goodness.
Next, I went to the big Foyles, my spiritual home. I took a lot of pictures of books I want to buy, and marvelled at the vastness of the store. It reminds me of our old Waterstones, before it got turned into the Apple shop. I also spent a while waiting outside the disabled toilet, and when the guy who'd been inside ambled out (he didn't appear disabled but I don't know what was going on under his suit) he just said "all yours" which was a little bit unnerving, like what had he left me? Thankfully when I went in there was no evidence that he'd done anything terrible but still, it was not the most relaxing pee I've ever had.
After all that, I didn't really have time to do anything else, so I started going down to Parliament. However, I got distracted by the window of a bakery called Ole & Steen, then looked at the menu which said they did cinnamon swirls, so of course I wanted one. Unfortunately, when I arrived at the entrance, it had two big steps which rather prevented me from entering. I made a noise like "Oh!" and two older ladies who'd just come out took it upon themselves to help me out. One stayed with me, while the other went to ask the staff if they had a ramp or a secret disabled entrance. When she came back, she said they did not have either of those things, and she'd told them that was actually illegal which prompted much discussion among them, but she assured them that it is the case that they need to make their premises accessible. A member of staff offered to carry me and the chair inside, which I said no to because that would be hugely degrading and embarrassing, and it's just not an acceptable substitute for a ramp. I said all I wanted was a cinnamon swirl, so he and another girl that had come out went back to get it. When they returned, the woman that had stayed with me went up to take it from them and said "And I assume this is complimentary?" which was so great, and they said yes so of course I was very gracious and said thank you, but I will be following up on their accessibility problems. They didn't bring me exactly what I expected, but in fact two giant slices of what they call a Cinnamon Social. It looks delicious but it is enormous. Definitely not one for me to tackle alone. Anyway, at that point I thanked the two women again profusely, and we said our goodbyes. I really had to motor.
When I arrived at Parliament, I realised the taxis were all staging a protest, so I was glad I hadn't planned on getting one down there because they'd stopped traffic all the way up Whitehall. The queues to get into the House of Commons today were the longest I'd ever seen, and they were saying it was going to take two hours to get in, but I saw some Anthony Nolan people who were trying to grab attendees and get us fast tracked. Thankfully the wheelchair helped with that, and we zipped past a very long queue of people who'd probably been waiting a very long time. I felt a bit bad but hey, they have the ability to stand and wait. I don't. Once inside, I found a member of staff to take me to the Churchill Room (we weren't on the terrace this year, boo) and on the way we saw David Blunkett and his dog. I resisted the urge to pet the dog. When we got to the room, it was quite empty because so many people were stuck in the queue and there was a slight air of panic. I got my name badge, and went over to see Henny and a lady who I know but can't remember the name of. We had a chat about my eyes and discussed the stem cell eye drops, but I said I wasn't at that stage yet. I do hope it doesn't get that far because it is not so easy to do those now! Have to apply for funding and all sorts of bureaucratic nonsense. I shoved my bags under a table, took out what I needed, and went to talk to people. I joined a conversation with some Anthony Nolan people and a lady who's a patient and is the face of a video we have out at the moment, so we were comparing notes on transplants. After a little while, I said that I didn't want to be rude, but I wanted to try and talk to more people this year, because I always end up speaking to just one or two people, and she said that was fine, to go and mingle. First I found Angela Rayner, a Labour MP, so we got on fine and we bonded over our great hair. She is already a stem cell donor because the nurse that looked after her son when he was born got leukaemia, so she signed up then. Didn't even need to convince her! We had a photo taken, then she had to go. They only ever pop in briefly! I then went over to a trio of people who I didn't know, but it turned out that two of them worked with/were connected to Mark Tami, who is the chair of the APPG, and I can't remember exactly what the other lady did. We somehow ended up talking about Love Island, and discussed and the Michael/Amber and Anna/Jordan situations are not the same and how Curtis is now a terrible human. I tried to then try and move the conversation on, and we talked about how one's mental health is affected during and after a transplant. Oh, I had a lot to say about that. Then it was time for the speakers to speak, so Mark went up to say a quick welcome, thank you for coming, and he introduced Charlie (Craddock, one of my doctors from the QE who is a big deal in research) who spoke about the work his trials are doing, and how they hope to be able to do transplants for people without the need for such perfect HLA matching. That would be brilliant, because it's so hard to find a match if you're a BAME patient, so if you can just use a donor that isn't well matched but you don't get all the GvHD, so many lives could be saved. I made a mental note to talk to him about this, because my liver donor was unmatched, yet I have survived, admittedly with some difficulty sometimes, and I wondered if any of my data or notes might be useful in this work. Then it was the turn of Mark Ritson, who spoke of his experience as a patient. He'd had two transplants from the same person, and felt the same way I do - that even though he's been through so much horrific shit, he's glad, because he likes his life the way it is and he likes the person he is and he doesn't know if he would have those things if he'd never been ill. I spoke to him about it afterwards and he said that people who've been ill tend to get it, but people who haven't just don't understand. True. The third speaker was Jackie Doyle-Price, who is the Minister for Mental Health, Inequalities and Suicide Prevention. She also spoke about the focus on needing more donors for BAME patients, and getting better outcomes for them. When everyone was done, there was only about half an hour left before we got kicked out, so I spoke to Charlie and his colleague Professor Anthony Pagliuca about liver transplants and stem cell migration and donor cell toleration, and how those things might work together and be useful in stem cell transplants. Basically, my weird body might be of some use! I also had a brief catch up with Nigel from DKMS who I recognised from last year, and by the end of that, it was time to go! Somebody had been organised to escort me out, so I wasn't waiting around forever, and on the way, I saw Frank Field. I normally don't see any MPs I recognise, so this was an excellent day!
I was going to meet Bradley (who used to work for Anthony Nolan but has left now) at Euston, so we could hang out and I could return his book. I decided to try and get a cab, but as none come down to Whitehall, I went up to the Corinthia Hotel which is quite nearby, and there was a cab outside waiting! Hopped in there and we zipped up to Euston, where Bradley was waiting. We went to Ritazza and got some overpriced beverages, then I gave him his book, plus I lent him The President's Hat and gave him the spare copy of Stuart's book that I had, because it's very funny and I don't need two (I love you Stu). Then we talked for about an hour and I left him with the impression that I am definitely going to commit a murder. I have no idea where he got that idea from, I am the least murderous person I know. Besides, if Jeffery Deaver has taught me anything, it's that there is always a transfer of trace evidence and I would definitely get caught.
He came with me to assistance, where they were indeed expecting me, and I was sent to my platform pretty much immediately, so we said goodbye at the gate. I whizzed down to my carriage, and put my headphones on to block out the other train people.
When we arrived at Birmingham, nobody was there to assist me (we were a couple of minutes early but they will have known that), and I was sitting in the doorway looking panicked, so two youths yelled at the guards HEY SHE NEEDS TO GET OFF. Two men in orange vests came over and asked if I'd booked assistance, to which I rather pointedly said yes, and they said not to worry, they'd get me off the train if nobody came. Well, the next thing I knew, the one that had gone to check on things came back with a ramp, and I was able to get off the train! Oh, the joys of being disabled. I said thank you to the two teenagers, then got in a lift and when the doors opened, there was Daddy!
All tuckered out.
