Archives For London

The 18th of July.

I love days like today. I live for them.

I went to London for the annual summer reception for the APPG for stem cell transplantation at Parliament. The journey down there was pretty uneventful; I just drank my coffee and listened to Surf Music by Paul Williams (thank you James Acaster for that recommendation). The assistance people were pretty timely upon my arrival for once, so I got out of Euston and made my way to Albertini, where I was meeting Laura for lunch. We have been friends for yonks, since we were both on LiveJournal about fourteen years ago, but have never had the opportunity to meet. I thought, seeing as I was going to be in town and she works near Euston, it was an ideal time for us to get together. She was already there when I arrived, and we got seated and set about picking our meals. I went for a pizze bufala (basically a margherita but with big blobs of mozzarella and extra basil) and she had mushroom pasta. We did a lot of complaining about the government, especially Boris, the Love Island recruitment process, what she does for a living, what I do instead of making a living, plus what I was going to be doing this afternoon. It was only a shame that we didn’t have longer, but she had to get back to work and I was supposed to leave about an hour to get through security at Westminster, so we said goodbye with a promise to do it again when we have more time.

I beetled up the road to St. Pancras because it was the closest taxi rank, and managed to poach a cab that had just dropped someone off. He took me down, and was able to stop the closest to where I needed to be, out of the three times I have made this journey. It turned out I didn’t need huge amounts of time to get through security, because a woman sent me down a different ramp that bypassed the queue, so I just popped my bag in a tray, negotiated the metal detector, and got gently patted down. I got into the main entrance, where I expected to have to twiddle my thumbs for the next hour. However, they had a small but interesting exhibition about women’s suffrage, so I looked at that, then found some Anthony Nolan people at the other end and we found some very agreeable members of staff to get me to the terrace pavilion via the accessible route.

When we got there, we weren’t quite allowed in yet, because they were still setting up the cakes and stuff, so we had to hang around in a little vestibule until we were able to enter. Once enough of us had arrived, whatever cordon was in place seemed to be lifted, and we were able to spread out. I said hello to everyone, then sat for quite a while with Laura, who works with Lucy (who helped me with the gig), and we talked a lot about carbs and the gym and stray cats wandering into our houses.

This year I did want to make a point of talking to more people, because for the past two, I have ended up only spending time with one or two and just talking to them for ages which is nice and all but I thought I would make a change. I made a beeline for Simon Bostic, who was the first ever recipient of a stem cell transplant from an unrelated donor. It was because of his story and his mother’s campaign to find a donor that Shirley Nolan was inspired and began what we know to be Anthony Nolan today. I wanted to find out more about him, and his life now, and (maybe rather egotistically of me) thought he would be interested in meeting me, as the first recipient of a completely unmatched donor. He and his husband were pretty shocked to learn the story, but once we’d got through that, we talked more about after effects, and how a transplant isn’t a magical cure, and chronic lung disease. His capacity is worse than mine, but I think his gas exchange is better because he is able to stand up and talk simultaneously, which I cannot do without getting breathless, even with oxygen. Lungs are weird.

Suddenly, out of the corner of my eye, I spotted someone that looked familiar. I turned to look, and to my utter delight I saw Manos! He was a reg at BCH when I relapsed, and was there all through the transplant and bad GvHD. I can’t remember exactly when he left, but he was then at the QE when I transferred there, and now runs the haematology/transplant department at Heartlands. He seemed equally thrilled to see me, and we had a massive hug and started reminiscing. I caught him up on how I am generally functioning now, and he told me about the developments on the ward where he works, and how he thinks about me when people want to give up on a patient, but he refuses to because he has seen impossible things happen. He gave an example of a patient that he has not forsaken even though everyone else wants to, but now that guy has gone to Israel to have a drug that he couldn’t get here, and now Manos is going to give him a transplant that means his children won’t lose their dad. Then he introduced me to Prof. John Snowden, Chair of the NHS England National Specialised Commissioning Clinical Reference Group (CRG) for BMT, who was one of the speakers. He’s also interested in people who’ve had solid organ and stem cell transplants, so we could have talked for a long time. However, he couldn’t chat much because he had to talk to the organisers about his speech and how it was going to run. My fellow transplant recipient and journalist friend Hannah was there, so we got to hang out again which was lovely, and I met Lisa Nugent, the head of donor recruitment for DKMS along with their head of PR, Nigel. We went to get drinks, and were going to continue our conversation when it was time for speeches. Mark Tami MP said a few words, then introduced Prof. Snowden. He talked about how long the NHS has been doing stem cell transplants, and about how we still have so much more to do, especially in our efforts for BAME patients, whose chances of finding a donor are monumentally worse than those of white, Northern European heritage. He also spoke about how the NHS is always at the cutting edge of transplant science, and what is being done with CAR-T cell therapy. Then he introduced Simon. He spoke about his mother’s efforts to find him a donor, to save his life, and to save her and other parents from the agony of losing a child when their death is preventable. He also talked about how magnificent the NHS has been in continuing his care after transplant, right up to this day, because the transplant is not the end. But hopefully it will be better for our final speaker, Farida Dedes. She was a student at Brunel, and became ill at the end of her first year. She was diagnosed with ALL, and was told she was headed straight for transplant, if they could only find her a donor. They really struggled, because she is black, and eventually she was told that they were going to give up searching, because nobody could be found. However, a month later, a donor popped up in Brazil. Amazingly, she donated her cells, and Farida had a successful transplant. She is now back at university, and will become president of the Brunel Marrow group next year, with the aim of really highlighting the necessity of adding more BAME donors to the register, because she knows first hand how devastating it is to be told one can’t be found.

I found her afterwards, because I identified with a lot of her story (mainly the sudden diagnosis and immediately living in hospital, and the need for transplant straight away) and we talked about having your life kind of ripped from under you like that. We were joined by Max Tami, the MP’s son, who also had leukaemia, but I know has also had issues afterwards. I think it was good for him to meet some people who understand.

We were then warned about the fact that it was nearly time to go (the people at Westminster are really arsey about you leaving the room literally as soon as the event has finished), so I made a move to say goodbye to people. I made sure I hugged Manos again, and got a photo with Simon to document our historic meeting. Then we started getting kicked out, except I couldn’t leave and nor could Simon (from Anthony Nolan) because he had a big thing on wheels that needed ramps too. They dicked about for ages, and only after half an hour of us getting frustrated, did the man in charge finally decide to get useful, mainly because I think he was worried we would wander off to places we weren’t allowed.

By that time, traffic was pretty bad, and I knew it was going to be impossible to get a taxi nearby anyway, so I started heading up Whitehall with the intention of finding a reasonable place to get a Hallo from. However, everywhere was too busy/inaccessible, and the route back to Euston was fairly straightforward, so I ended up just bombing my way back there, straight up Charing Cross Road, then right onto Euston Road, arriving at the station just in time for the platform announcement. I quickly bought a drink, a cookie and a copy of New Statesman, then met the assistance chap at the train and was on my way home.

The 19th of July.

That has been nowhere near as interesting as yesterday. I gave myself a little lie-in, although I am still tired this evening, got dressed, had coffee, breakfast. I started writing about yesterday, such has taken me all day, on and off.

I took a break so we could wash my hair, and I had to get changed, because the dress I had put on its currently too small. I’ve put on a couple of inches around my waist and I would rather they were not there, so I’ll have to get back into the gym.

We had lunch and caught up with Love Island (what a massive hypocrite Dr. Alex is), then Mommy went to Grandma’s and I sat with Dolly, trying to concentrate so I could finish writing. She was actually out this afternoon, sitting on the windowsill, so I occasionally chatted to her, and gave her some Dreamies.

When Mommy got back, she found some wet stuff at the bottom of the stairs, so she went up to investigate, and found a magpie freaking out in Christine’s bedroom, shitting everywhere. Thankfully she was able to get it out of the window without getting injured. Excitement, but a visitor we could have gone without.

When that was over, I went back to Dolly, and I got to stroke her! Finally reached that stage again. 

 

The 16th of June.

Three hours of sleep. Street noise, bin lorries, club music unbelievable. Drop off about four. Up at seven. Pad about, make disgusting scummy tea. Refuse hotel breakfast, insist we go on family trip to Hjem for delightful Danish pastries and granola and really good coffee. Feel better. Go to V&A to meet Christine. She and Daddy go to Ocean Liners, Mommy to fashion, I go to miniature portraits, except the wrong way via household objects. Finally get to tiny pictures, just reach the end when Auntie Hilary texts me to say she and Jeremy are here. I sweep round jewellery, marvelling at the sparkly things, go to find family. Go to restaurant, and spend three hours eating and catching up on life in detail. Have to leave at three to get back to Euston for train home. Big hugs. Taxi to station. Buy fruity drink and magazines. Get put in least favourite wheelchair position. Train stops at Rugby because of suicide. Everyone gets off and we wait for ramp. Then train is allowed to go to Coventry; we go alone. Alight at Coventry, find ourselves stuck. Wait for coach. For some reason, no coaches will go to Birmingham so after 40 minutes we are put in a taxi. Driver gets lost trying to find New Street station so we end up getting out in Chinatown. Daddy goes to get the car from the NIA car park, Mommy and I go to the station to get food from M&S, wait for Daddy. He picks us up, we drive home, get here just after eight, two hours late. Pain indescribable. Cushions feel like clouds. I eat crumpets. I take Zopiclone. I collapse.

The 17th of June.

No energy today. Had two Zopiclone last night, so today I’m useless but I don’t care. My bed was amazing.

Unsurprisingly, I haven’t much to say. This morning, during breakfast and coffee, I watched Sunday Brunch (sort of – I couldn’t tell you what happened). I wanted to give crocheting a hexagon a try because I’m going to make a blanket of them. Thought I ought to practise. When getting out a hook, I discovered that two have gone missing (the 2.5mm and the 10mm). I had the 10 out not long ago to make the multicoloured cardigan, yet it has disappeared. We’ve searched everywhere but they’re nowhere to be found. I can’t lie, I was so tired and confused, I nearly cried.

Dolly is back under the chair (she managed to get under the front which is frankly very impressive) and not coming out for anything, so this afternoon I sat with her, crocheting a hexagon with one of the hooks I do have, and watching The Incredibles. Nothing that required memory or attention. By the end, I’d got her to eat a Dreamie I put right in front of her face.

After that, I wrote about the weekend and now it is time for partridge. I want to go to bed for a week.

The 14th of June.

Today has revolved around Dolly.

She was supposed to be at the vet this morning for her second vaccinations. We had one chance, so we put some food in the carrier. Unfortunately, we fucked it up and she ran away to under the chair. I rang Lydon’s, and they were able to reschedule her for 5pm.

We left her for the rest of the morning, and vowed to try again later with the help of Shaki.

I went to sit with her this afternoon, watching Bates Motel and hoping she would emerge from her hiding place. Eventually, she crept out, and I had to do the slowest movements known to man, swinging my legs over the arm of the chair away from her, sort of thrusting my pelvis up so I could get out of the chair and on to the floor. I crawled to behind the chair, and I shoved a bunch of pillows underneath so she couldn’t hide under there again.

Then we had one more shot before the 5pm appointment. She had, miraculously, gone over to the carrier, even inside, but I was at the other end of the room so couldn’t shut the door. Mommy came in with some food, so I slid a bowl over to her, and she put it in the very back of the carrier. Dolly slowly climbed in, checking on Mommy through the slits in the side. When I could see that she was eating and not looking, I instructed her to lean over silently and shut the door. Victory!

At the vet, she was actually okay! A bit scared, but Daniel was able to do the injection and she didn’t bite or scratch. Now we have to go back to basics with her. Time for some hard work.

The 15th of June.

I’m going to write about today and tomorrow in a slightly different way, as more of a record than my usual fashion. I just don’t have the energy to do it properly, so I’m sorry if it’s weird. A lot of it has been travelling. We have been to London to go to Space Shambles at the Royal Albert Hall for Daddy’s birthday present.

Train to Euston. I have to make a couple who are sitting in the wheelchair space move which enrages them but unfortunately for them it says my name above the seat and therefore they have to shift. Taxi to the Serpentine. Lunch in café in Hyde Park. Bimble through park to hotel, spotting all the good dogs out for a walk on a sunny day. Arrive at hotel, immediate disappointment. Had not realised when booking that it is not wheelchair accessible. There is one sentence on the website saying that the lift starts from the first floor. No mention of the fact that said lift has no lights, an unreliable door and a terrifying suspension. I climb the stairs but am exhausted and furious. Unpack. Go out to explore Whole Foods. Get very excited by all the baked goods. Buy a cinnamon swirl from the box of Crosstown Doughnuts. Go up and have fourth coffee of the day while eating doughnut. Decide to head for Royal Albert Hall, taking a detour around Natural History Museum to kill time until dinner reservation. Meet Christine, go to Verdi for pre-show pizza. I manage half, struggle to stay awake. Get shown a photo of a genuinely ugly baby and I laugh so hard I cry. Eat some blood orange and lime gelato. Time for show. Stash wheelchair, slyly retrieving water bottle from underneath, avoiding confiscation at bag check. Find seats, find scarf to filter air through to prevent choking on dry ice. Spend the next three hours listening to scientists and astronauts. Grace Petrie sings a lovely song. The final act are a band who play too loudly for too long. Time to go. Worn out and in pain.

The 12th of February.

Where to begin? I have been reluctant to start this because I feel like it might dilute the memory or I’ll forget stuff.

The journey down was nice and straightforward. The chap was even there with the ramp when we arrived at Euston! We got a taxi to Jen’s in Highgate, where I was going to try on fun clothes in order to find an outfit for the show. I was shown into a little room, one wall full of clothes, one full of shoes, plus a rack of dresses, the floor covered in more shoes and bags and jewellery behind me. First I picked some favourites to try one, because I had to be selective. I looked at four or five in the end, but eventually decided that the first one I’d worn was the best. A navy blue midi dress from Libelula covered in sequins with pink piping, plus some Nadia Vodianova shoes and massive clip on earrings and a two-finger ring. I left with a promise to leave it at the hotel reception in the morning.

We had lunch at the nearby Cafe Rouge (saw so many good dogs), then another taxi to the hotel. When checking in, we each were given a fresh warm cookie, which I ate on my bed very messily. Unpacked, then collected what we needed for the show. Next stop, Union Chapel!

When we arrived, we rang a buzzer and were met by Bea, who works the evening shows. She showed us the backstage/dressing rooms, the facilities, and of course the chapel itself. They had built me a massive ramp to get onto the stage, and I met the sound guys so handed over my old iPhone, plus the cable and power pack.

There was no point going back to the hotel, so I sent Mommy and Daddy to get coffee, then it wasn’t long before the Anthony Nolan team and Christine arrived (separately). I finally met Lucy, then she and her colleagues set up all their tables and banners, and I got changed into my spangly dress. I had a practise run up the ramp, then got talking to lot of Anthony Nolan volunteers, remembering some from previous events. Then the doors opened and it was time to meet my public! For a while, I just watched strangers coming in which was brilliant because they weren’t obliged to come, they were just supporting the cause. Then I started seeing people I knew, like Emmer, Charlie, Denise, Amy, Joy, Lauren and Hannah. Mark and Shereen came over and I gave him a huge hug. I’m so glad he could come. Acaster arrived, then Suzi and Flick, and I went backstage with them. Soon Nish appeared, and before long, it was time to start the show! First up, aside from our lovely host, we had James, during whom Sara arrived, and then Felicity. Nish then introduced me, and I drove up (nearly off) the ramp onto the stage, giving a royal wave. The cheer was immense, and I had to tell them to stop because I was going to cry. I said most of what I’d planned, plus I gave Mark a shout out because he deserves to know what a hero he is. In hindsight, there are things I wish I’d said, but no matter. Everyone said I did really well, and I was happy.

In the interval, I gave Josh the bear for his baby, and met the Anthony Nolan patients who’d come backstage and lots of photos were taken. Josh opened the second half, followed by Suzi and Sara. Everyone was brilliant, it went better than I could have hoped. I said goodbye to the people who had waited at the end, and Nish, Sara and Suzi.

So many hugs. And it was all over. I put my socks and boots back on, and we made our way back to the hotel. Pyjamas, Graham Norton, wind down, bed.

The 13th of February.

I didn’t fall asleep until about three, and woke up at seven. Made myself a cup of tea, and got everything packed back up. I left the garment bag for Jen at reception, then we had coffee next door at Saint Espresso. Breakfast was required, and as it was pancake day, we went to The Diner nearby. We went past The Breakfast Club and its huge queue, but found The Diner nice and quiet, where I had buttermilk pancakes with bacon, maple syrup and whipped honey butter. So good, but I couldn’t finish them.

A last cab back to Euston, where I got another coffee, and we trundled home. This afternoon, I have put all my warm clothes on, curled up in my armchair. So happy.

 

The 10th of February.

Woke up at 6. Let’s be honest, I’m probably not going to have a good sleep until maybe Tuesday night at the earliest? My mind might not be feeling nervous but my body obviously is. I know this because this morning we were talking about nothing in particular yet I nearly burst into tears. Clearly I am not as relaxed as I think I am.

Progress on the photo library bollocks is minimal. It has taken almost the entire day for it to repair, then I tried to be clever to sort them more efficiently but that backfired, so I’ve left it doing something the very slow and tedious way. Be back to it tomorrow.

I have, however, planned what I’m going to say. I’ve decided to keep it short, because nobody wants to hear me wang on for ages and get emotional. After that, I crocheted the monster scarf and watched The Blacklist. Now rugby, dinner, bed.

The 11th of February.

We have sold out.

I couldn’t belive my eyes when I saw the email this morning. I would have screamed, but I was in the bathroom and didn’t want to cause concern. I settled for not being able to stop smiling for a good hour. Unbelievable.

It’s been rather a calm day, to contrast the hectic stress-fest that will be tomorrow. I finally set the computer to do its photo exporting task and have been checking it periodically. I think it will be done by bedtime.

I tried on a dress I’m taking with me in case the thing with Jen falls through, just to check it still fitted, and got out everything I can pack before the morning. Got a list for before we go out. Convinced I will forget something crucial.

I finished the giant chunky scarf, and it will certainly keep me warm when I require it. It’s really heavy! Then I watched some more of The Blacklist, just trying not to think about everything. I don’t think I’ll sleep much tonight. 

The 3rd of December.

I have had many jobs to do today, and have completed most of them. The important ones, anyway.

Once dressed and full of festive coffee, I got two blog posts done (the one I typed yesterday didn’t work), then set about writing some promotional blurb for this event I am planning (I promise details next week) and it is harder than you might think! It took me the whole of the rest of the morning. It needed to be under 200 words and I am very bad at being concise.

After lunch, I did some more of my crochet gifts while we skipped through the X Factor final (let’s not talk about it), then I painted my nails while we caught up with last week’s Howard’s End. Wrote some more emails, and now I am about to plan where Mommy and I go tomorrow in London and in what order. Christmas shopping trip!

The 4th of December .

I am on a train and my back hurts. It has been a long day and my left eye has been excruciating for most of it. I have positively flooded it with drops to try to alleviate some of the pain. Occasionally it hurts less and I am taking the opportunities as they come.

I woke up at twenty past five for no good reason and couldn’t get back to sleep, so I tossed and turned as I listened to podcasts to kill the time.

Coffee, toast, advent calendar biscuit (I decided I probably wouldn’t want to eat it by the time I got back this evening). At New Street for ten o’clock, where I discovered Nationwide were having issues so I couldn’t withdraw any money or use my debit card. Not ideal for a day of Christmas shopping. Still, it got resolved while we were on the train, so I got some cash at Euston and breathed a sigh of relief.

Started at Harrods where we spent half an hour getting lost trying to find the café, having to traverse the hell that is the Toy Kingdom before finally finding the place to sit and drink coffee and eat lunch. I had a braffle, which is a brioche-waffle hybrid filled with Welsh rarebit and it was delicious. We were entertained by the very stressed manager telling all the staff that it was imperative that they smile, and when he got angry he started speaking Italian so we couldn’t understand. The one thing I hate about Harrods is that no matter when you go, it always seems to be full of children. Why are they not at school? I am very much of the Victorian position that children should be seen and not heard except I don’t want to see them either unless I have chosen to spend time with them. All I purchased was a salted caramel brownie. Disappointing this year!

Next stop Fortnum & Mason which was much better. I only bought my festive Buck’s Fizz marmalade but Mommy got several things so it was worth it. We only go to the food floor in there because the lifts are ghastly and I cannot be arsed. So then we went to Liberty via Cinnabon (I cannot pass it without buying one, it would be a disservice to Dean) and there I found joy in a felt sausage dog tree ornament and the haberdashery. The wall of wool is my happy place. However, I discovered the one in John Lewis is even better. I know I should have known this, but we hadn’t been before so didn’t know its true beauty. So much wool. I bought some that I would never normally have purchased but my eye really hurt and I was sad so I made a decision of self-pity.

Last stop Selfridges. I bought an elf gingerbread man. But he was all. I saw some fun wrapping paper but it would be ridiculous to buy that in London and besides, I have not decided on a theme yet and I can’t do that until I have got all my gifts. I have bought one present today, only a couple left to go. I am so uninspired this year.

Now on our way home. I am so looking forward to a comfortable chair and taking off my eye make up.

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.