Archives For London

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. 

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.  





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. 





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.