Archives For summer

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. 

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 20th of June. 

It has been slightly less hot today. It didn’t feel like it this morning – I had to get changed after going upstairs to put on minimal make up because I was so sweaty. It was very unpleasant. 

I was meeting Sadie for waffles at one, so Mommy dropped me off in the Bullring car park and I went up in the lift to Selfridges so I didn’t have to deal with any blinding sunlight. I was early, as always, so I got a table and waited for her while perusing the menu. We decided we would have just waffles, no room for milkshakes too. I went for the Seriously Cinnamon, but without all the whipped cream and stuff they normally put on top. Just cinnamon and syrup for me please. 

I got to hear all about the debacle of her stolen phone, her dealings with the book eater (Matthew Goodwin, her PhD supervisor), and she got to squeeze my fat fluidy arm. A fair trade. Still no venoplasty date, by the way. Once we’d eaten and paid (neither of us could finish our plates), we moved to Starbucks for cold beverages and comfier chairs. Amazingly, sofas became available just as we ordered our drinks! How fortuitous. While there, we saw two children riding around the toy section of Selfridges on these houses that move around like real ones. They’re incredible and I want one. 

Back home, I managed to get the kittens to play a little bit. They will play with me, as long as I don’t make any sudden movements. Sigh. 

The 21st of June. 

Today has been the hottest. And I had to go outside. Bleah. Oxygen clinic at ten, where we saw Ben, who was very happy to see me without tubing on my face and looking much brighter. He also wanted to know what was going on with my venoplasty/PICC, and when we told him that nothing has happened, he said he would email Andrew to try to speed things up. 

Had a slightly longer appointment with the oxygen nurse, just because I had to explain everything about the pneumonia and my stays in during the past six months. She stabbed me in the ear and my oxygen levels were a bit lower than last year but that is only to be expected and they weren’t terrible.

Went into town before going home, where I bought three books (Why I’m No Longer Talking to White People About Race by Reni Eddo-Lodge, The Power by Naomi Alderman and We Should All Be Feminists by Chimamanda Ngozi Adichie), an eyeliner and mascara from Boots, and a fan brush from The Body Shop. The lady who served me had to go and find one from the stock room, and came back with several which she put on the counter. I paid, and she brought my receipt and change round the counter to give to me, but not the brush. I assumed she had just forgotten to pick it up so asked for one and she thought she’d given it to me but I didn’t, so she handed it over. Then we went to Starbucks so I could get an espresso frappuccino. While I was waiting, I happened to look in my bag and saw a brush, which confused me because I was sure I’d put it in the Foyles bag with the books. I checked, and there was a brush in there too! I had no idea how the one in my handbag got there, so I got my drink and we went back to The Body Shop. I went up to the counter, where the lady was, and handed her the extra brush, apologising for my accidental thievery. She was very surprised me but congratulated me on my honesty. Sure I could have kept it, but what would I do with two? Seriously no clue what happened. 

This afternoon, I think I made some progress with Betsy and Brodie – we played games with my fingers. They don’t immediately run away from me now. 

I had an appointment with Trine at the chiro at half four, and it was much better than last time. No hospital bed makes such a difference!

The 18th of June. 

Too much warmth. Sleeping was not good. I have a sheet on my bed now so hopefully tonight it will be easier. I am not built for this weather. I prefer about eight degrees less than this. Low to mid-twenties is a good temperature. 

This morning was blog post and Sunday Brunch. Coffee, curtains closed. This afternoon, I’ve been counting down until kitty o’clock but now it’s here and they’re going to be late because another fosterer is delayed. Bahhh. After lunch, I started some new crochet (finished the doily last night but it needs ironing), then at 2 I went upstairs to lie in the dark and listen to Gardener’s Question Time because I’m very old. 

Back downstairs an hour later, crocheted until five, then found out about the hold up. Now writing, twiddling my thumbs. Dinner between six and seven so they can’t come then. I just hate it when people are unreliable. It’s not Shaki’s fault, but still it is frustrating. I want my floofs!

The 19th of June. 

Kitties arrived after dinner. They are super fluffy and gorgeous. The mum (Betty) is very friendly, she is very happy to be petted. The kittens (Brodie, Bree, Bailey and Betsy) are less forthcoming – will have to make them enjoy it. 

Obviously it is too hot to do much of anything. Last night was gross – my room is the hottest, even with the curtains closed and windows open. Bleah. 

For most of the day, I have been sat with the kittens, trying to get them used to me. Tennis on in the background, glasses of iced water. The kittens are bouncing around, exploring their new abode, having lots of pretend fights. I can tell which one is Brodie because he’s the only one with short fur. Betsy is the biggest, fluffiest girl, and she’s grey, so I think I can identify her. Bree and Bailey are both brown and look basically the same, but one is lighter. Which one that is, I am not sure. 

Wilting. Really not looking forward to bedtime. 

The 16th of June. 

I have a tiny bit of good news. I gave the ciclosporine eye drops another go last night, fully prepared for it to be awful again. But it was fine. It stung a bit, and first thing this morning was a bit tricky, but it was so much better than last time. So now that extra line of treatment for my eyes is up, let’s hope that helps. 

So it’s been a quiet day. I wrote up a blog post this morning and this afternoon I did some podcast listening and redid all the crochet I’d had to unravel. Now back to where I was, I can try to finish. Will have to do most of it tomorrow because on Sunday, new kitties come, so I will be super distracted. I need some tiny floofs. 

The more that comes out about Grenfell, the worse if gets. The Queen and Prince William visited victims today, Theresa May only went to the hospital where she could control the narrative. Then she goes to a church but nobody sees her and she sneaks out of a side door. No council-lead support; everything is being done by the volunteers. Everybody in power is doing the bare minimum, sometimes not even that. It’s inhumane. 

The 17th of June. 

So hot. So bright. Being on Voriconazole means I’m not really allowed to go in the sun (it majorly increases the risk of getting skin cancer and since we know someone who did get it because they didn’t know, I’m not taking any chances), so I can’t go outside and enjoy it, but even if I could, I’d be so photosensitive, I’d be blind. I miss being able to see without pain. 

It’s been mainly a day of crocheting. Want to finish the doily. And I’m doing very well – I’ve got one round left. Although focusing on tiny crochet hasn’t been great for the eyes. Finish a round, have a rest. Lots of drops. 

Very little to say. I iced some cakes and put sugar elephants and ducks on them. I climbed the stairs and it was fine. That was a really good feeling. It’s been so long since I didn’t need an immediate rest when I got to the top. 

The 17th of July.

I do love summer, but it’s too hot in the sun. I enjoy being able to wear my dresses though. There are not many days a year that I can, so the next few might require outfit changes so things get worn. 

Got up earlier then usual for a Sunday because Victoria and Isobel were coming to look at kittens at half ten. They were very prompt and I ushered them in, so the kittens legged it to the other end of the room. We stayed where we were, and slowly Nova, Nettie and Noelle all came to say hello. Isobel was very indecisive (as 3 year olds are), stuck between Nettie and Noelle. I think the decision was made for her when Noelle really took to them both, having a great time playing with their fingers. 

They left after about an hour, and they’ll come back to take her home when they are back from holiday in a couple of weeks. Her name will be changed to Sophie so we’ll have to start calling her that. 

After Grandma had been taken home from church and we’d had lunch, Mommy and I went to the Cats Protection Garden Party and took some cakes for them to sell. We saw Jen and Lee, bought some cake, jam and raffle tickets, but couldn’t stay long because it was roasting and I needed to get back to feed the kittens. 

For the rest of the afternoon, I’ve been photographing the kittens for the website, filling in my Anthony Nolan expenses forms and composing an email to Mark Tami about mental health post-transplant. I will update my blog, I swear. 

The 18th of July.

More writing. I think this must be how actual writers feel, doing essentially nothing but. I didn’t get any done this morning because there wasn’t really time before I had to go out. I had my breakfast and coffee, fed the kittens (who are much friendlier now we’ve taken the cage down), then it was time to go to the gym. 

I was meeting with Vlad because now I’ve had this news about my spine, I don’t think it is wise for me to be putting any extra strain on it until I have seen the surgeon, know what’s going on and what we’re going to do about it. Mr. Harland might say it’s fine to exercise, or tell me what I can and cannot do, which would be great and I’d go back immediately, but it hurt every time I worked out and so for now, I will not be gymming. He asked how my diet had been, which I think is funny because I will not be changing that for anyone. It’s taken my entire life for me to cultivate a relatively normal relationship with food, and any obsessive monitoring of what or how much I eat will only end badly. Sorry but not sorry. 

After lunch: writing/blogging. I’ve written up two out of three, with the second one scheduled to be published tomorrow morning, and I’m going to try to do the third one this evening, because tomorrow I’ll have another one to do!

The weather is too warm. I cannot go outside because it just feels too close. The air feels heavy. Sleeping tonight will be a challenge. Daddy’s just got in from work and I remember just how gross the train home can be in this kind of heat so I do not envy him at all. 

The 5th of June. 

Just had to put my book down when it’s all getting exciting. Still, there is nothing of interest on television tonight so I will probably be getting back to it. 

I know this will be surprising, but it has been another very quiescent day. Had to feed the kittens as soon as I got downstairs because they had eaten every last morsel of what I left them last night. It’s going to be good when Gabe’s neutered; he’s so aggressive, guarding his food! I have had to separate him and Gracie a few times because he’s been attacking her and she’s done a tiny scream. I will not have that. 

Sunday Brunch and a blog post, then this afternoon I watched Netflix while the kittens fought in the material of my dress. I also learned from Christine that Ravi the hot morgue tech from iZombie is doing stand up at this car show we’re going to for Daddy’s birthday! Unfortunately, he’ll be there in the evening when we are not. Bah!

The weather will be good tomorrow and I love London in the sunshine. I just have to hope the icing on the cakes I intend to buy doesn’t melt in the heat. 

The 6th of June. 

London again! But in much better weather than last week. Summer in the capital always reminds me of when we were there for the Paralympics and everyone was lovely to each other. 

I was on my first train this morning about forty minutes before anyone else so I’d almost finished the paper by the time we actually set off. The kindly Irish train manager called Paddy made sure I didn’t need anything, and we talked about how the London assistance team are useless. This was proved by the fact that they weren’t there again. Paddy was busy, and the gap between the train and the platform was small so I managed to get the chair off myself. When driving up the platform, I saw the buggy DRIVING AWAY. I was furious. Apoplectic. So I went straight to the office and gave them a very stern talking to. They apologised and said he had to get some other passengers, and I would’ve been fine with that if he’d bothered to tell me, since he knew I was there, but as far as I was concerned, I’d been abandoned. And this happens every time, so we’re going to make a formal complaint. 

The trip to Anthony Nolan was very easy, and the taxi driver had had Tanni Grey-Thompson in his cab and said I reminded him of her which I was delighted about. He also said I’m “chirpy”. The students doing the filming were ready for me when I arrived so we set up on the sofa and I answered all the questions, did a couple of scripted lines, then they filmed me walking and talking while holding an Anthony Nolan mug. Easy!

I had lunch with them, where we discussed climate and universities, then I went on my way. I was supposed to be meeting Suzi, but she had podcast dramas, and was expecting a bed to be delivered (as far as I’m aware it’s yet to materialise) so she had to reschedule. This was fine; I went to the Primrose Bakery where I had a cookies and cream cupcake, which I ate there while on the phone to Mommy, and I bought a red velvet, a vanilla and a salted caramel to take home. Once I’d finished, I decided to go to the zoo. I only had an hour maximum, so I saw the monkeys, including an antisocial gorilla and a tiny baby one, some tigers, warthogs, flamingos, penguins, llamas, various birds, and a donkey. Then I really needed to go, and I didn’t get to see the sloths, so I bought one at the gift shop before getting a taxi back to Euston. 

A man in the WHSmiths there tried to make me buy a litre of water because “it’s bigger” and it had a sports cap so “easier to drink”, then he did a demonstration which included a sound effect. I got on my train home with no trouble, Mommy met me in Birmingham, and we went home, stopping at Tesco to buy three pints of Ben and Jerry’s and a box of Magnums. Summer!