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 14th of June.

It feels like we are just lurching from one tragedy to the next at the moment. Every week there is another atrocity, and it seems every single one is political. There is no doubt that the fact that this is a deprived area with poor residents, and that things have been done on the cheap will have made it worse, and the fire service were unable to tackle the blaze as effectively as they might have because they’ve been decimated by the cuts that Boris Johnson made. Heaven forbid there was a fire anywhere else in London. Just last year the Tories voted down a bill to force landlords to make buildings suitable for human habitation (surprisingly, 72 of them are landlords themselves), and Theresa May’s new top aide has been sitting on a review of fire regulations for months. They kill people. Every day. 

I had haematology clinic this morning, which was not enormously productive. I saw Praveen and updated him on my current circumstances, and he emailed Andrew. The most important thing was that we get some drugs, because my prescription got completely messed up when I was in.

I spoke to Emelda, Andrew’s secretary, and she has assured me that the paperwork has been sent and I should get a date for my next venoplasty very soon. I really bloody hope so; it was super warm today and I want to be able to show my arms without feeling like a freak . 

This afternoon, I hid from the news. I put on a sheet mask, watched Pretty Little Liars and iZombie, crocheted. I am lucky that I am able to escape from it. I can’t imagine the terror felt by those on the upper floors; if I were in that situation, I would find a way to kill myself. Absolutely petrifying. 

The 15th of June. 

I’ve been awake on and off since just before six this morning. It was too hot. Not surprising when you consider I still had my winter duvet on – it has been changed now so hopefully tonight I won’t be so warm. 

Quiet morning. Breakfast, coffee, then out to Black Sheep to get my hair cut at half twelve. Michaela was delighted by my FucktheTories necklace and immediately called Danyl over to see, who was straight in for a high five. I have decided he is going to be my colour guy now. Booked in with him next week. My hair was getting pretty long, so we decided to chop off all the back and sides. There’s only so much that can be changed when it’s this short already but Michaela can always come up with something. 

As I was leaving, I went to get in my chair and there was a lady sat by it with a great little chihuahua called Dolores. She was also a fan of my necklace and we had a photo together. 

Got home shortly before two, and this afternoon I have been crocheting, then unravelling because I changed colour and the new thread was thinner, so it has made the whole doily curl inward. Redo with a thicker one. The fluid in my arm makes it ache. 

The 12th of June.

It’s Daddy’s birthday!

He had already gone to work by the time I got up, which was a good thing because I hadn’t written his card yet. We’re going to take him to the Pink Floyd exhibition in London for his present, so I didn’t have to worry about that.

I had a phone call with Anthony Nolan this morning because they need examples of post-transplant care, so I was telling her how excellent mine has been. I know not everyone is so lucky. Then I had a chat with Nationwide because they had frozen my debit account for no apparent reason and hadn’t told me. It turns out that I had used it at a cashpoint or on a website that has left me exposed to fraud so they’ve had to cancel it. Well, that’s fine, but they could have sent me a letter? I’ll get a new card,it’s all fine.

This afternoon, Mommy and I went into town to take back all the kimonos I didn’t need. I also needed to get some facewipes, then we went into Selfridges to get Daddy some token bits – essentially fudge. I also bought myself some espresso chocolate spread so I’m very much looking forward to my toast in the morning.

Once home, I finished crocheting the bear, so he can go in the post this week!

The 13th of June.

I am annoyed and sad. Finally managed to speak to Tracey (the booking coordinator) and she hasn’t even had the paperwork yet. I have haematology clinic tomorrow so we’ll get them to chase Andrew. It’s all well and good for him to say “Yes we need to do another venoplasty” but if he doesn’t send the paperwork for three weeks I’m going to have to wait even longer for this nightmare to be over. It has been six months and it should not be this hard.

My alarm didn’t go off this morning so I didn’t wake up until quarter past ten. Thankfully I didn’t have anything that needed doing, but I still don’t like waking up that late. I got to have my coffee spread on toast for breakfast though, so there was that.

Since talking to Tracey early this afternoon, the heavy cloud has descended. I don’t think it’ll be a long-term storm, but it’s here all the same. I’ve just sat crocheting, listening to podcasts, trying not to think about it. I’m just so tired and it feels like nobody is trying.

The 10th of June.

Is been a weird sort of day. Back home, back in my own bed (which was beautiful), but outside of our lives, the world is imploding. Part of me wants to avoid the news until it is all sorted but part wants to get up and fight for what is right because five more years of what we have been enduring is a death sentence , and that is not an exaggeration.

I might be feeling buoyed because I have just watched Wonder Woman. I am ready to kick the asses of a thousand men. We went to a 2.20 screening, and about five minutes before we were due to leave, Mommy got a phone call from Grandma’s home because she had fallen (her dining chair broke), she’d hit her head and was refusing medical treatment, so she had to go down there to convince her otherwise.

There was nothing Daddy and I could do, so we went to the film. There were some pretty terrible people in the screen (who takes a seven year old to a 12A?) so I had to ignore them but that wasn’t too difficult. It is a decent film – there are some holes and I had major issues with continuity and Ares just doing the whole “villain explaining his plan” – but I still enjoyed Gal Gadot being super badass. I liked the beginning part the best though. All the women being strong and awesome. More of this all the time! Show little girls we can fight.

Grandma has gone to hospital and is having a CT. I think she is going to be okay.

The 11th of June.

My bed is so great. I won’t mention it again (until my next admission). I have just missed it a lot.

This morning was Sunday Brunch and apparently the finale of season 2 of Scream, although there is another one left on Netflix? I don’t really understand. However, I feel quite smug as I had thought that Kieran might be the killer since he showed up at the funfair (sorry if that’s a spoiler but oh well). He was too quick.

Grandma came to join us for lunch – she is fine, just a bit bruised. I say “lunch”, but it wasn’t until five. She sat in the back room and watched the tennis (good thing we have no kitties at the moment), and I did much crocheting. I’m making another bear, this time for Jodie who was in the year below me at school and is expecting her first child.

Got my hair washed, and I had a really nice lie down with traditional Sunday afternoon radio. I also achieved quite a milestone – I climbed the stairs without oxygen and didn’t feel like I was going to die! Well done me. Maybe there is some hope for the rest of this year.

The 8th of June. 

Happy Voting Day everyone! Hope you all got down to your polling stations and voted to try to keep the Tories from killing us all. 

I have spent the majority of my day at Lympstone Manor, the new business endeavour of Michael Caines. We left the house at 12 and drove across the River Exe, finding ourselves pretty much directly opposite the place John and Maddie got married. It is a really beautiful venue, incredibly picturesque. Spa weekend would be ideal. 

We started off in the lounge, having drinks. I stuck with non-alcoholic, which I was then very pleased about because my choice of Orange Blossom (orange and passionfruit, elderflower and lemon) was so incredibly delicious. I want it bottled, in bulk. The menus were brought, and I was slightly concerned because it was not what had been on the website (obviously I had already chosen my meal) but I still found tasty choices so my worries were allayed. I initially wanted to order a pork dish for my main, but it had a paprika jus, which I asked to be left off, but then the waiter came back and said that there was basically paprika in everything on the dish, so I decided to change to lemon sole. 

We were brought some amuse-bouches of aubergine mousse and lightly curried lamb croquettes, then taken through to the dining room. It was really far, so I had to have a serious rest when we arrived at the table. I tucked myself in. We were brought bread (so much bread!), and then a fancy teacup full of bisque. I don’t often have a bisque, but from my understanding of how they’re supposed to taste, it was a pretty great bisque. Starters arrived, mine being parmesan and rosemary gnocchi with truffled egg yolks. It was so pretty and the yolks were so beautifully poached and cute, I almost didn’t want to burst them. There were also some mushrooms, but I ignored those. 

The gap between starters and mains was a bit too long – we think there may have been some problem in the kitchen, but when they did arrive, they were worth it. My sole was so delicious, I was glad I couldn’t have the pork. It was so light, everything was cooked perfectly, I could not pick a fault. Then we were brought the dessert menus, which I didn’t need to look at as I’d already decided – chocolate ganache with white chocolate ice cream, thank you. Everything I ate was just exquisite, and I couldn’t recommend it more. While we were having coffee and petit fours (also scrumptious), Michael Caines himself came round to talk to us (and the other diners). Last time a chef did that, it was Alain Roux and I was on a lot of opiates, so I immediately started crying. Thankfully today I was actually able to speak and tell him how much we’d enjoyed everything. 

Now we are back at the house, I am in my pyjamas, and staying hopeful about the election until the news forces me to believe otherwise. My echo chamber will keep me buoyed. 

 

The 9th of June. 

Holy shit we actually did it. Well, we didn’t win, but she’s lost seats, clinging to a coalition with the DUP. I can’t see that lasting. Well, I fucking hope not. 

Anyway! Home day. We had to be out of the house by ten, so once we were packed, we were gone. We went into Exeter, to try to find some presents for people, get some lunch, and pass some of the time before leaving Christine to get her train. John Lewis was pretty disappointing, so then we tootled down to the cathedral. However, I didn’t fancy going round it and neither did Daddy, so we went to find somewhere to have lunch. There was one coffee shop which was very empty and did not look inviting, so we found another called Cakeadoodledoo. A ridiculous name, but they made a good flat white, and when Mommy and Christine joined us, we had some tasty lunch. I had a toasted bagel with egg mayonnaise and it was delightful. Not as great as yesterday’s lunch, but good enough. 

Post-food, it was about one, so we left Christine in the Costa by the station, and set off on our journey home. We stopped at the Gloucester services where I got another Richard Bertinet cinnamon swirl and a cookie dough brownie, and some green juice so I at least have some form of vegetables today. I watched Scream on Netflix for the majority of the car journey, and I now am just looking forward to bed. Back in my own bed, for more than three nights this time.