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The 5th of August.

Oh god such a long day. I am in so much pain. I got up at ten to five because we had to be at New Street for twenty to seven, and that is too early for a Saturday. When we got there, we bought coffee and breakfast pastries, then sat in the assistance office until it was train time.

Arriving at Euston, we did not have time to wait for even five minutes for the ramp, so we just sorted ourselves out. Bought lunch from Pret, and a coffee to put in the thermos for later (Olympic Park coffee is vile). Then we bombed down the road to St. Pancras and got on the javelin to Stratford. I got the last seat, by sheer dumb luck. Thankful, because I can’t stand for six minutes. Upon arrival, we had to join the queue of wheelchairs for the lift, then had to navigate Westfield, trying to find a way to get to the corner of John Lewis where we were meeting Christine. The first lift was broken, and marshals didn’t know where we should go, so we ended up going all the way to the other end of the mall to find a working lift, then doubled back so we could finally get on the correct route and meet Christine. Found her, then joined the crowds heading for the Olympic Stadium. Got settled in our seats, in the disabled position just above the start line, so we had a great view of that, plus some of the heptathlon events that were going on.

For most of the morning, my eyes were killing me, and there was a freezing cold wind which I couldn’t seem to find respite from from, despite even putting up an umbrella to use as a windbreak, so I couldn’t enjoy myself as fully as I might have. I saw a lot through my camera lens, between drowning my eyes in drops and screwing them up tight. At one point, I wanted to drink the coffee we’d brought in, so I poured some out only to find it tasted really weird. I drank a bit more, then remembered that the woman behind us at Pret had ordered a soy milk cappuccino. We must have got that. No wonder it tasted so disgusting.

We saw lots of events – no finals, just heats, but it’s always fun to shout at people to run faster, and groan with everybody in the crowd when someone knocks the high jump bar down. It was so sad when KJT hit the bar on her final attempt, and we all watched her curl up in a ball on the mat, poor thing. We all felt it.

The weather made things interesting; we had several showers, and as we left, some huge rumbles of thunder. I’d been covered in the giant wheelchair poncho, so didn’t get wet when the rain came. We weren’t herded the way we were after the Anniversary Games, so we got back to Stratford much quicker than we expected. Started talking to a couple on the platform who also had a wheelchair, to find that their son is having a stem cell transplant this week! Tried to share the successes of my life to give them hope. No liver failure chat for first-timers.

We arrived at St. Pancras just after two, so had just over an hour before we needed to be at Euston. I suggested we go to Origin to have an actual nice coffee, so that took up a good half an hour, then we scooted down the rest of the round.

We picked up some reading material for the train, plus some Pom Bears, then off to the assistance office again! We’d barely sat down before we were sent to the platform, despite our train not departing for nearly thirty five minutes. We were told the chap would meet us with the ramp, so we waited out in the freezing wind for him to appear. After ten minutes, there was no one, so I rang to check the situation, and she said he was coming. We waited another ten minutes, and still nothing, so we hauled the chair on to the train, only to find the wheelchair position floor was covered in food and some other crap. I didn’t really feel like covering my wheels in that, so we folded up the chair and I sat next to Mommy. This turned out to be a smart move, because a couple got on the train with an old Westie who sat under the chair in front of me so I had a dog friend for the journey home! Then we picked up some pizzas for dinner and have about an hour in the house before I have to go out again for Regina Spektor tonight. Busy busy busy.

The 6th of August.

So. Tired. So. Much. Pain.

Regina Spektor was beautiful last night. She was, frustratingly, half an hour late on, but was so charming and brilliant, I forgave her. I never thought I’d hear Us live and it was so gorgeous. She is one of few singers who are just as good as their record if not better in person. And I was spotted by Hayley from school so we caught up afterwards which was delightful.

I am very tired now though. I got to bed after midnight, and slept until ten. I’ll still be having an early night tonight I think. Plus my back hurts all over, and my neck, and my bum. Having zero fat on there means sitting on non-padded seats all day leaves me in much, much pain.

This morning, once I was actually up, I wrote about yesterday, which was a long one. I’ll have lots of blog work to do tomorrow – got to get the photos off my camera before I do a post as well.

After lunch, I crocheted. Just crocheted squares for Michaela’s baby blanket and watched the new Orphan Black, which made me do a small cry.

We wear our scarves just like a noose
But not ’cause we want eternal sleep
And though our parts are slightly used
New ones are slave labour you can keep

We’re living in a den of thieves
Rummaging for answers in the pages
We’re living in a den of thieves
And it’s contagious

The 18th of July.

London in the summer is my favourite. I was down today for the summer reception of the APPG for stem cell transplants at the Houses of Parliament.

I got to New Street about lunchtime, bought myself some food and coffee, and went to sit in the assistance office. They got me on the train nice and swiftly, and I settled down listening to some empowering tunes to get me pumped for talking to MPs. At Euston, of course, they were late to pick me up. They might have been just within the 5 minutes but I was bored and had to pee so got the chair off myself. Had an awkward moment at the disabled toilet where the man with the key tried to stop a woman and her daughter going in only to be told that the daughter was blind. Ergh.

I went to get another coffee, and although it was early, I thought I might as well just get my cab to Westminster, just in case there were delays because of security or whatever. I had a very perky taxi driver, who I educated about stem cells, and he ended up dropping me off quite a way up Whitehall, because otherwise we would have sat in very slow traffic while the meter ran up. So I beetled down the road in my chair, trying to avoid people and not get blinded by the bright sun. When I arrived at the visitor entrance, there were only a couple of people ahead of me, and they just x-rayed my bag and patted me down. No weapons here. I carried on through to the main entrance hall, and it was only quarter past three. The reception didn’t start until 4. Oh well. I texted Cassie from Anthony Nolan to let her know I was there, and proceeded to twiddle my thumbs. I didn’t have to do it for long, as I soon saw Henny and Richard from AN arrive, so then I had people to talk to, and they found someone who could take me to the terrace pavilion an accessible way.

When I got there, I saw Cassie and Simon, and met some other members of the team who I’ve heard of or talked to but not met in person before. They were still setting up, so I just watched and talked people as they arrived. As it got to 4, people began to trickle in, and before we knew it, it was really rather busy. I actually didn’t end up speaking to any MPs, except Mark Tami, the chair of the group, as it happened. I talked to several people from Anthony Nolan, and other patients or supporters. Emma, one of the other young ambassadors, was there, so we talked about what’s been going on with both of us and had our photos taken, then I spoke to a girl with an interesting connection to me and obviously an incredible memory – she met me when I was in YPU with Alice and Vicky back in 2010/11 (I think that’s when it must have been), as she was a friend of Alice’s. She was there today with another of her friends who’d had ALL, so we had a good conversation about relapses and getting leukaemia tumours. Then the last people I really talked to were a girl called Amy and her friend – Amy set up the change.org petition to reverse the decision to not fund second transplants when her friend Sasha had to fundraise to pay for hers. Only after she started paying did the decision change.

Before I knew it, it was 6 o’clock and time for us to go. Cassie found a man to take me back out, and once I’d escaped the labyrinth, it was time to find a cab. Last year, nobody was willing to come to Whitehall, so I decided to drive up the road for a bit until I could find somewhere suitable to get picked up. I ended up getting all the way to Shaftesbury Avenue, and eventually stopped at The Palace theatre. I was bound to get a taxi round there, so I used the mytaxi app and a chap came to pick me up. It didn’t take us long to get to Euston, so when I arrived, I had about an hour before I had to go to assistance. I bought a sandwich and a drink from M&S, a couple of magazines for the train, then in WHSmith’s they were doing buy one get one half price on some books. There were two that I wanted anyway. I am awful.

The 19th of July. 

Tired. Took me hours to fall asleep, and I’m a bit floopy today. Got up at half nine, and most of my morning was spent writing about yesterday. It will be a long entry – always is when I go on a trip, so probably another tomorrow. 

This afternoon, we caught up on The Handmaid’s Tale from Sunday, then two episodes of Criminal Minds: Beyond Borders. Then I went through to the kitties, as I didn’t really see them at all yesterday. I watched two episodes of Orphan Black, and they slept on opposing windowsills. I got Bree to purr again! She likes what Betty likes – having her chin scratched. I will make her friendly. Or at least not terrified of people. Christine is coming back with us tomorrow, so she’ll meet her and that will be a good test. Hopefully she doesn’t run away. 

The 21st & 22nd; Birthday!

January 23, 2017 — 4 Comments

The 21st of January. 

Birthday! Had to get up super early which I didn’t love but it was for a good reason. I had a pain au chocolat for breakfast, then opened some of my presents. I got a box of macarons from Macarons & More from Grandma, a book token and a big journal from the Hudsons, a cheque from Taid, and some Moomin paraphernalia from Mommy and Daddy – a t-shirt, a notepad and pencil, and a wooden Little My that I need to assemble.

Our train to London was at 10:10, so we set off shortly after breakfast, and we were taken to the train by a woman with a very laissez-faire attitude which I did not care for. I also didn’t like being in coach A because it means I can’t really talk to the people I’m travelling with, but there was at least a fun baby who smiled at me when I made faces at her. 

We didn’t have time to wait for the Euston team to turn up, so got the chair off the train and went to get a cab to the South Bank, where we met up with Christine. We then went on a twenty minute trek in the cold to Where the Pancakes Are, but their misleading website said they would have some free tables for walk-ins, but there was nothing, so I told the woman she had ruined my birthday and left feeling very disappointed. 

Very nearby was a Caravan restaurant where they had many tasty dishes available and nice coffee, so then I was greatly cheered. I had a flat white, then smoked salmon and scrambled eggs on toast with a mimosa. Christine gave me my presents which were two Harrods cronuts (salted caramel and Speculoos and the zebra one), then Daddy had a pudding and I had more coffee. 

We got a taxi back to the South Bank because I couldn’t bear to get that cold again, then we had an hour to kill in the Royal Festival Hall before our Moomins exhibition tour. I went to the shop and bought a little stuffed Moomin and a bowl. 

The tour was lots of fun and very informative – it’s narrated by Sandi Toksvig, along with the tour guide, which was a lovely surprise, and there were lots of original illustrations and stuff that I would never have seen otherwise. I also really liked that they didn’t just gloss over the fact that she was gay and are teaching the children going on this tour that it’s okay and not something to be ashamed of. I think we need to be reminding kids that whatever they are is okay at the moment. The only bad bit was that it was not easy in the wheelchair – we actually had to collapse it and I did a lot of crouching in each room. It would be fine in a manual one with big wheels but the spaces are too small and the floor too uneven for anything else. We coped, but other people might not. The tour guide was very helpful and apologetic, and she promised to feed it back. 

Our next stop was Konditor & Cook to pick up my birthday cake, then we headed to the BFI for hot beverages and a rest before we had to go back to Euston. I had a hot chocolate, and did a lot of coughing which worried me but I think it was just because of the temperature change between there and outside. 

We saw many people who’d been to the Women’s March, which I would have loved to have gone to, but if I had, I would have definitely got ill. It was so cold today, I couldn’t have coped, even in a mass of people. Wonderful, but not sensible for me. 

When it was time, we said goodbye to Christine, then back to Euston. I got some Pom Bears and New Scientist, and when we got home, it was time for cake!

The 22nd of January. 

So tired today. I had a really bad night, not getting to sleep until past one, which is way too late for me. I got up at half past nine, put on some very warm clothes and settled in to spend my morning writing about yesterday. 

This afternoon, I was about to start writing the post I would have done yesterday, but then Alison came over with my birthday presents (more wool and flowers) and there was some catching up to do. Becky is full of lurgy so can’t come round herself, so we got all her news by proxy. It sounds like the cold Grandma’s got and I do not want either of their germs. 

We put the flowers she brought me in a vase, and I was able to finish my writing, which didn’t take long. Tomorrow won’t be so quick as there was a lot to say about my birthday. Then I got to work on otter number 2. I’ve made everything except his ears and snout, so I’ll get him finished this evening. When I’m done, it’ll be an early night. I need a big sleep. 

The 11th of January. 

Both interviews went really well, and the 9pm one went out on Radio WM about half eleven – I’m on about 1hr25. I tweeted Anthony Nolan with the link and they’re really happy with it which is good, and I’ve even had some people say they’ve signed up to become donors because of me. I love that so much. 

This morning I did a blog post, then called a potential adopter who I’m pretty sure we have kittens for. That was easy enough, then I spent my afternoon crocheting and watching two more episodes of The OA. I thought they were the last two, but there’s actually two more! Still, that’s a good thing because I had concerns as to how they were going to wrap things up. 

We went out about twenty past five for me to get to an Old Hallfieldians meeting at six. Unfortunately, we didn’t have a quorum, so couldn’t have the meeting. I couldn’t get hold of either parent to come and get me, so Celia gave me a lift to Five Ways where I got a train to Wylde Green. The first time I’ve stood on a platform on my own in nearly ten years, and I still find the spot where the doors stop. Such skills. 

I got to feel normal for twenty minutes. No one on that train could tell that I’m a mess. 

The 12th of January. 

I will warn you, this is not going to be a very exciting post. I have spent literally all day crocheting. I suddenly remembered last night that I’d said I’d crochet some animals for James’ (Dr. Ferguson) sons, and I have liver clinic on Monday. I hadn’t got started, so today has been industrious. 

He had suggested Oo-Oo the monkey of Raa-Raa the noisy lion for the older one, but unfortunately, good patterns for them just don’t exist. So I found a pattern for another monkey which I hope he will like, and in going to make a bear for the younger one. A bit generic but hopefully a safe bet. 

So yes, as soon as I had dressed and breakfasted, I got to work. I’ve made the head, a patch to go on it, the ears, the body, the arms and a leg. Not bad for just the one day. I stopped to eat lunch, and to do two Cats Protection calls I had scheduled for this afternoon. One went well, the other not so great. Bah. 

Tonight I plan on finishing at least all the parts of the monkey, and get him assembled if I have time. 

Oh, and we’ve had no snow. 

The 1st of October. 

Even more pain tonight, but for a good reason – London trip for Christine’s birthday! Had to be awake ridiculously early so we could be at New Street for 8:40. I bought a Guardian and a Pumpkin Spice latte for the train because I am so very basic, and we sped down the country to Euston. 

Christine met us there, and we got a cab to Berner’s Tavern. Had it not been pissing it down, we would have walked/wheeled. Not today. The restaurant is within The London Edition Hotel and it is niiiiice. Very fancy. We were early for our reservation, so sat in the lobby, had coffee and gave Christine her presents. Just token things because we’re giving her a voucher for a fancy cooking lesson of her choosing, so I gave her a crocheted mini manatee and whale. She is going to add them to her crochet corner at work. 

We moved through to our table, and I already knew what I was having, so while everybody else perused the menu, I just looked at all the pictures on the walls and watched the other people coming in. I was the only one who went for a sweet brunch dish – buttermilk pancakes with Nutella and bananas (no hazelnuts, I had those omitted). They were so good, but I couldn’t quite finish them. Curse my tiny stomach. I had a curly kale, apple, cucumber and lime juice to go with it, so I had some of my five a day. Plus the banana of course. Then everybody else wanted pudding, which I most definitely did not, so I had a flat white while they ate their desserts. I’m fairly certain Liam Gallagher came in while we were there – I tried to take a stealthy photo but it didn’t work out very well. 

By the time we left, the rain had stopped, so we decided not to get a cab to the theatre, where we were seeing Ian McKellen and Patrick Stewart in No Man’s Land. On the way, we happened to pass a Crosstown Doughnuts, so I went in to buy a cinnamon scroll to eat later, and while in the queue, I petted a dog called Cherub who was a chihuahua/Japanese Chin cross and I was happy as a clam. 

We arrived at the Wyndham’s just after two, so we stashed the wheelchair and found our seats. We had an excellent view, but it is an old theatre, and the seats were not good for my back. For the most part, I managed to forget about the pain, because the play was so good. I have not seen any Pinter before, so being introduced to his work by two of the world’s greatest living actors was pretty cool. Obviously it was an incredible performance from all the four actors involved (there are two younger men as well), sometimes uncomfortable, sometimes funny (and some lines taking on new meaning in current context) and overall amazing. Standing ovation at the end, and I found myself welling up for no reason that I could think of. Maybe because I just felt so lucky to be there. 

From there, we went to Picturehouse for a drink and a nibble before returning to Euston. I just had a St. Clements because I still didn’t want any food, but I did get a Mini Egg cookie to take home and eat tomorrow. We talked about the play, found that Daddy had nodded off a couple of times but not missed too much, tried to work out why the man sitting in front of us had left in the interval, and before we knew it, it was time to get a taxi back to the station. Hailing one wasn’t yielding results, so I whipped out my phone, and within five minutes we were on our way home. 

We were sat in the quiet coach on the train, but I put my earphones in anyway, and listened to a Flatshare Slamdown podcast while wishing the journey faster so I could lie down. 

So much fun, but so much pain. 

The 2nd of October.  

I don’t feel quite as awful as I thought I would, but still not great. I think I was helped by the Zopiclone I took last night, and I made no effort to get out of bed before I wanted to. I was up by ten though, I’m not an animal. 

I threw on my huge green polo neck for the first time this year, and spent what was left of the morning curled up in the armchair, writing about yesterday. Long post ahoy. I did get it finished by the end of Sunday Brunch, and to take my mind off my stiffness, I had scrambled eggs on one of my rainbow bagels for lunch, then my Mini Egg cookie. It definitely helped. 

This afternoon, Mommy took Grandma to get her hearing aids adjusted, and while I waited for her to return (so we could watch last night’s Strictly), I have just sat and crocheted. It is not super interesting to write about but I’ve made a good amount of progress and I don’t think it’ll take much longer to finish. I do look forward to being able to reveal it after Christmas. 

Going to lie down on the floor again now. I am going to be doing lots of stretching until I see the pain team.

The 13th of September. 

I have had just the most perfect day. So happy. I got up and had time to write up a post before we had to leave for the station, where I got a flat white from Starbucks that did not taste like garbage, and got settled on the train. My plug sockets weren’t working which was not ideal, but a nice man at the next table down let me use his spare one to charge my phone. 

The man with the ramp was very prompt for once, so I swiftly alighted and got a taxi to Kaffeine where I was meeting Suzi. The cabbie was very chirpy, whistling a happy tune as we made our way through the traffic and I was only a tiny bit late. We sat outside because it was a) gorgeous weather and b) much easier than wrestling the wheelchair inside, and we basked in the sunshine. I had a really excellent dark chocolate brownie and flat white by the way, I would recommend. I elaborated on what the event tonight was, and told her about the situation with my back, and she caught me up on how Edinburgh had gone, and explained what she’s working on at the moment which all sounds very promising and I’m excited for her. While we were sitting, a man walked past us into the shop, and I said “That guy looks like Dexter” (as in, Michael C. Hall from Dexter) and she said “That is Dexter!” so that was my London celeb-spot for the day. No idea why he’s here but whatever. I was later reminded that he had a stem cell transplant a while ago and I should’ve got him to come tonight. I am not quick-thinking enough. She had to leave at quarter past one, but was going in the same direction as me, so we headed towards Selfridges until she had to split off to go to her meeting. It was so nice to catch up; she is such a babe. 

In Selfridges I bought some rainbow bagels and a cinnabon, which I ate in the Starbucks on level 4 while listening to an hour long podcast to kill some time. I had a browse of the book section, where I had to disappoint a girl who wanted to know where I got my hair done. Sorry, you have to travel to Birmingham for this. 

I gave myself plenty of time to get to Zizzi where I was meeting Lauren for dinner, and had a few stops on the way. I went past Workshop Coffee where I bought some Square Mile Sweet Shop beans, and then made a stop in Konditor and Cook for two brownies – I was very restrained. That was just round the corner from the restaurant, and I was only about ten minutes early, so they let me sit down and peruse the menu while I waited. When she arrived, we pretty much ordered straightaway, and our pizzas arrived very quickly. I was still quite full from all the cake, so I only managed about a third of mine, but it was fine, I took the rest away in a box. We got to talk about her joy at finishing her MA and being able to read books for fun, and how her nan is having a great holiday in Ireland with all her friends. 

We paid, then had to find our way to the BMA. First we went the wrong way, but Google Maps put us back on the right track. We met up with Amy outside her office building which is basically next door, and we had a tiny group hang before Lauren went to meet her other friend and Amy and I went into the BMA. We picked up our passes and followed the signs that said Anthony Nolan. I had to get in a teeny tiny lift to get down to the room we were using, although we then very quickly left it to go into the attached garden. Ben was out there with a large folder of papers, and he said hi before going to greet guests. Amy and I sat at a table in a slightly shaded area, and various people gravitated towards us for chats. Some Anthony Nolan people I knew like Richard and Henny, some I didn’t, Charlie Craddock, and we had a delightful time discussing podcasts with a guy called Owen who’s a donor and his friend. They’re doing the Birmingham half-marathon in October but not to raise any money, they’re saving that for the full marathon that comes next. I also briefly got to meet Alice Byron’s dad, and we talked jaundice and liver drugs, then before we could talk more we were being ushered inside for speeches. First Henny, then Charlie, then me. It was fine, much better when I had it written out, and much less crying this time. Lots of people came to speak to me afterwards, including Nadia Martini, Yaser’s sister, so it was super nice to meet her, and I spoke to other people who’d had transplants or had family members who had. Everyone told me how inspiring I was, and Ben presented me with some beautiful flowers. At nine, it finished, so I said all my goodbyes, and Amy and I headed back to Euston where I gave a homeless man my box of pizza. She sat with me until her train came, then mine was delayed by fifteen minutes, so by the time we pulled into New Street, I was more than ready to be home. Toast, then bed. 

The 14th of September. 

Didn’t get as much sleep as I would have liked because I had an appointment to get my hair cut at quarter past ten. While I was in Starbucks yesterday I just had the overwhelming urge to chop it all off again and lo, it is done. Wonderful Michaela. She’s undercut the sides and it’s longer on top so I look a bit shaggy in a good way. So glad it’s done. 

When I got home, I had lunch which included the fudgepacker brownie I bought at Konditor and Cook, then I sat for about an hour, writing about yesterday. So much to say!

One of the effects of me sitting down all day was that my feet had puffed up with fluid. My back is actually not terrible, I think because I got out of my chair as much as possible, but there has to be some sort of punishment for going out. To try and combat it, I went up to my bedroom where I lay on my back with my legs up against the wall, trying to drain the fluid out of my feet while I watched the first episode of American Horror Story. We’ll see how that goes – if it gets too scary, I’ll find something else. 

Back out this evening for an Old Hallfieldians reunion. The traffic was ghastly, so I was half an hour late, but when I arrived, Celia was the only one there. After some sleuthing, we determined that the MailChimp email didn’t go out. Thankfully, other people did start to arrive, but most excitingly, my friend Steph came! I have known her since we were five but haven’t seen her since we were sixteen as she went to Rugby for sixth form, then university in Nottingham and New York, and has been travelling since then. 

She’s an artist now, and has been artist in residence at The Met in New York and The Museum of Tomorrow in Brazil, so she’s just a bit great. She’s back in England for a month, so she and her mum came to the pub and we had dinner while chatting about life now and back then. Things like the controversy of the elocution competition, the school play of Sleeping Jack Whittington and the Seven Bears, and the time we did an assembly in which I had to wear Steph’s mum’s fox fur coat. No idea what I was meant to be, but it was huge and really soft. Such random things I remember. 

We left just after nine, and I gave her the biggest hug I could muster. Not leaving it ten years until next time!

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.

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Richard Whitehead after his record-breaking win.

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Richard Whitehead after his record-breaking win.

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Jonnie Peacock post-race.

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Jess Ennis-Hill.

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Relay win!

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Shara Proctor.

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Martin Lewis, the moneysupermarket man for some reason?

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Before the false start.

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The empty lane.

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KJT.

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No caption required.

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