Archives For London

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. 

The 18th of September. 

Very busy morning. An apt start, considering the rest of my week. Start as one means to go on. 

Shaki was concerned about Henrietta after I’d told her about our lack of progress with her, so we took her to the vet. The only time they could offer was 11am, so I finished up my coffee, then we had the fun job of trying to get Henrietta into the carrier. Basically we chucked a lot of Dreamies in there and shut the door. She did not like it. 

At the vet, she came out and slunk around the floor, hiding under the table, behind the bin, behind a pile of boxes, hissing at Daniel. He eventually cornered her with a towel (like a matador), and gave her an injection of long-lasting antibiotics. She wasn’t going to allow anything else. She even did a couple of protest poos in the corner. She’s been in the dog cage since we got back, because Shaki wants to come and see her this evening. Hopefully the antibiotics will make her feel better, and she won’t be so angry all the time. 

This afternoon, I’ve been doing Cats Protection admin and watching Bones, while looking at my new crochet book that arrived today. It’s full of mix and match dolls so I can make people! Already got one commission. Better get some flesh-toned wool. 

The 19th of September. 

This morning was lymphoedema clinic. Mommy and I set off to Lichfield for ten, and when we arrived at St. Giles, there was a little bit of waiting around before I was called through. I met a nurse called Jemma, and I had to explain my history to her, paying particular attention to my past episodes of swelling and the timeline. We had a very long conversation, and because of the SVC narrowing, their protocol doesn’t allow them to fit me for another compression garment. She did measure me, in case they can give me one in the future, and it was interesting to learn that the right arm is 37% bigger than the left. So no treatment today – it really is all up to Andrew for now. 

We got home around lunchtime, so we ate, then Mommy went back or to Grandma’s. I went upstairs to sort out stuff to take to London tomorrow while I listened to the new episode of The Bugle. I think I have everything sorted. Just have to chuck it all in a bag tomorrow morning. 

Tonight I am out at The Glee seeing The Horne Section. My first of two consecutive nights out in a row. Getting ready to be exhausted.  

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The 31st of August. 

Mild improvement today? My eyes don’t hurt quite as much, and my sleep wasn’t as terrible. I suppose you can call that progress. 

This morning I had an appointment with Andrew, post-venoplasty. I showed him my still fat arm and he was very disappointed. I was surprised that he had expected it to work, frankly. The next option for him would be to put a stent in, but it would be pretty massive and made of metal, and it would stop any central venous access from my left side, which could be problematic. He has a multi-disciplinary team meeting on Tuesday with other interventional radiologists, surgeons and haematologists, and he is going to present my case to them, and see me again in six weeks. In the meantime, I’ll see Anne Dancey and the lymphoedema clinic, then we’ll see where we are. 

Popped into town afterwards where I bought some hand cream, moisturiser, and some drawers from Muji to tidy my make up area. Back home, I spent forty five minutes sitting on the floor sorting it out, which was very satisfying but very painful for my back. 

Had a breakthrough with young Hugo! I went to give the kittens some more food, and he came up to me with his brother and lay down near me, even allowing me to stroke him! I have no idea why or how, or even if it’ll happen again. I hope it wasn’t a fluke. 

The 1st of September. 

Another trip to London! This time, it was Daddy’s belated birthday present: the Pink Floyd exhibition at The V&A. Half ten train, arrived at Euston just after twelve. Train manager got the ramp for me because, quelle surprise, nobody there. We got a cab to the museum, when we met up with Christine and went to get some lunch in the café. I got a ham and Emmental baguette because everything else had spice and stuff in, then there were secret herbs in the butter that nearly made it intolerable. You think you’ll be safe!

Our tickets were for 2.30, and we had to get headphones for the exhibition (very clever, they could pick up where you were and play the appropriate audio), so we joined the queue of other organised people. We got in promptly, as did many others, so it was quite slow to get around – especially for me, as I can only move at the speed of those around me, and only see stuff when people aren’t in the way. I liked what I knew of them already, and there’s some stuff I heard that I’m going to look into more. I took a lot of photos. 

I bought two books on the way out (not Pink Floyd related) and waited for the others. They were watching the film at the end, which I had to leave because of blinding light. When they eventually emerged, we went to get coffee and cake. We decided to sit outside, which was a mistake because the wind was freezing. 

I wanted to see the Rachel Kneebone sculptures, and so Christine and I went to find those. The first one was fairly obvious, a giant column by the entrance hall, and there was a sign saying the rest were in room 21. However, once there, we could not see them. A volunteer saw that we were confused, and she went off to find out where the other sculptures were. It turns out that one of them got a bit broken, and they got taken away. She could see I was disappointed, and asked if we were interested in the Balenciaga exhibition. I said yes, but we hadn’t bought tickets. However, she said that was fine, and she’d get us in. Okay! So then we got to look around there at all the beautiful dresses. I discovered that Cristóbal and I share a birthday, and found a dress by Oscar de la Renta that I would gladly get married in. So stunning. 

We met back up with Mommy and Daddy, and it was time for us to return to our respective homes. Christine poddled off back to Twickenham, and the rest of us back to Euston. I bought some Pom Bears and a green juice for dinner, and a New Scientist to read on the way home. Pooped. 

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The 11th of August. 

I have felt like total shit all day. It took me hours to go to sleep again, although at least I had no headache this time. 

This morning, I did a blog post, and I tidied up the blanket. Generally though, I have been curled up, trying to decide what to make for Pete and Sophie’s twins, and trying to ignore the fact that I am cold, tired and still full of wind. Indelicate I know, but it’s so frustrating how you can start burping after breakfast, eat multiple Rennies, yet still be massively uncomfortable come the evening.

I am considering taking Zopiclone tonight – maybe just one tablet, because I have to get up at stupid time tomorrow and I need to be properly conscious. I really hope I don’t feel quite so terrible in the morning, because I would like to enjoy the trip. 

The 12th of August. 

Phew. Pooped. Been up since five but it has been worth it. I have been a bit burpy and in some pain but I’m okay. 

So yes. The same way as last week, we bought breakfast and coffee at the station, and our journey down was largely uneventful, save for us having to move the man who was in our seats. Obviously the Euston people were nowhere to be seen when we arrived, so we got off on our own and sped down the road to St. Pancras. We almost missed our javelin train, but I got a seat, then a lot of evil looks from older women who had to stand. 

No messing about with the lifts in Westfield today; we went up in the car park and found Christine in the same place as a week ago. We made our way to our seats, but upon arrival, found the space full of fridges, so we had been reallocated. However, that was absolutely fine because we moved to seats halfway down the home straight which were way better!

First up we had the 110m hurdles in the decathlon, and in every single race at least one person fell over. Then we had some important races – the 4×100 and 4x400m relays, men and women. Our team got through to the finals of all, and we did lots of shouting and clapping, but what was most exciting was seeing Usain Bolt come out to do the heat, because he wasn’t expected to. Mommy absolutely lost her shit – I have never seen her more thrilled. It’s so funny, listening to the cheers follow the runners round the track. Less funny is when they tried to make us all sing Hey Jude, because nobody knew the words. Argh. 

We left after the 4×400, once we knew our guys were through as fastest losers. Since we’d had so much time spare last week, we went to Westfield for a leisurely lunch, and had pizza at Francis Manca. I would recommend, because their crust is soft, doughy and delicious. 

Needed some green juice and caffeine so went to Pret, then bade farewell to Christine and began the trek back across London. Euston team actually got us on the train in a timely fashion, and I listened to the new Kesha album all the way home. 

The 7th of August. 

Still some pain today, but not quite as much. I had a decent enough sleep, but I’m still tired too. Too much activity for me for one day; my body is taking its time to recover. I’ve got very little on this week, just respiratory clinic and we’re back down to London this Saturday to do it all again. I will, at least, not have a gig to go to, so I can just rest when we get home. 

I spent most of my day working on blog posts, typing up the 3rd to the 6th, then uploading all the photos and culling the shit ones. Got to decide if I take my camera again this week, or if I take a different lens. We’re sitting in a different place so I need to work out what we’ll be able to see. 

I think I finished about half two, then I made two more squares of blanket while watching some more Glow. I’ll have to lay them out to work out how many I’m going to have to do. 

Tomorrow, I think I’ll stop the pregablin. A week of the double dose has done nothing but make me sleepy, burpy and hungry. The hunger is fucking me up because part of anorexia recovery is learning to feed yourself when you’re hungry, but now I’m having to ignore the hunger, tell myself it’s just the drug, and it’s so confusing. 

The 8th of August. 

Back to pretty much normal levels of pain today. I’ve binned off the pregablin because it has done fuck all for two weeks. I’ll be going back to see Dr. Blaney and we’ll discuss steroid injections. Stupid spine. 

Today has just been crocheting squares for the blanket. I did two or three this morning, in between visits to the kitchen to check on baking progress, because we made chocolate, ginger and sesame cookies and chocolate cupcakes with coffee frosting filling. 

After lunch, had a quick hairwash (very little colour is left in my hair now), then Mommy went to Grandma’s and I got back to crocheting. I’ve now got sixteen squares and I watched all the daytime crime dramas Sky Living has to offer. I think I’ll do four more and see how it looks. I don’t want the baby to grow out of it straight away!

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 20th of July.

Second trip to London this week! So much wheelchair – my bum is not going to thank me. Left much earlier today, as the train was at half ten, so we could have lunch in Covent Garden before the show. We went to Timberyard because it’s my favourite, despite them not doing crodoughs anymore. I had a ham and cheese croissant, a chocolate chip brownie pie and a flat white, after which I was very full and had to undo the top button of my jeans.

We had to pick up the tickets from the Donmar at two, then we waited for Christine to arrive inside the foyer. The rest of the audience seemed to be elderly people, but then again, what can one expect for a Thursday matinee? Anyway, once she appeared, we went to find our seats and settled in for Committee (or The Public Administration and Constitutional Affairs Committee takes oral evidence on Whitehall’s relationship with Kids Company). We went because Naomi was involved in the development, and we were intrigued to see how it had turned out. It was a musical developed from the transcripts of the session in which Camila Batmanghelidjh and Alan Yentob were interviewed, plus testimonies submitted for evidence. Considering the material, it is interesting and entertaining. The set is very smart, and the performances of the singers are really remarkable. I’m not sure I entirely grasped the point, but I enjoyed it.

After the show, we went for a drink, then dinner at Hawksmoor. I didn’t really have much room in my belly, so I decided to go for some lemon chicken with Béarnaise sauce and buttered greens, while Mommy and Christine had steak/a burger, then panna cotta. I just wanted a lie down.

We paid the bill, then we had about an hour before we had to be at Euston, so we decided to walk/drive back. The weather was nice, so why not?

The 21st of July. 

Everything hurts. My butt hurts, my legs hurt, my back hurts, my neck hurts. Sitting in the wheelchair for two out of three days is very bad for my body. 

I gave myself a lie-in this morning because I was awake until two, burping. I don’t know why – another mystery of my fucked digestive system. So there wasn’t a huge amount of morning left after breakfast and coffee, and I spent what remained watching BBC Newsroom and writing about yesterday. Tomorrow I will write two very long blog posts. 

After lunch, I started crocheting the minion I am making for Herbie, while I watched Orphan Black. Three episodes done and most of his yellow body. I have much crocheting to do, so I will have to have some industrious days.