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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 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 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. 

The 4th of June. 

Recovery day. I was woken by the dawn at a ridiculous time again but today I put a flannel over my eyes and went back to sleep until half past nine. Then I had to heave myself out of bed which was not easy because my back was fucking awful, having been sat in terrible chairs all day yesterday. 

There was a family get-together at a pub at one o’clock, so we arrived to big hugs from Hilary and Jeremy (both she and I were suffering a little) and took seats next to Tilly, Sophie and Peter. Inevitably, we ended up discussing London and the events of last night. I can’t help but feel this is why we need a Labour government more than ever, because the Tory Theresa May way is evidently ineffective, particularly when she has decimated the police service and accused them of “crying wolf” when they warned her how that would end. 

The mood lifted when we were brought food – life seems a little bit less dark when you are surrounded by family and mac’n’cheese. I was having to eat with one hand while I used the other as a visor because my eyes were not tolerating any light today. It has been difficult. 

I got to a point at which I had to go to the bathroom, which I really didn’t want to have to do because I had to walk and it was pissing it down with rain. I had Mommy walk with me, and as soon as I got inside I had to commandeer a chair from a random table so I could get my breath back. I suddenly became aware of how pathetic I must have looked when I heard Mommy say “It’s okay, she just needs to get her breath back”. Yeah, there’s nothing that can be done to help, I just need to breathe. We got Daddy to bring the oxygen for me to return to the marquee. Couldn’t do that again. 

For the last hour, our table was joined by John and Maddie (who had been there already, but mingling with other people) and we talked about the amount of medical professionals who had been there last night, and plans for the rest of the week. They are going to Falmouth for a few days before they go on honeymoon, so I was recommending all my favourite places. 

I think we left just after three? I curled myself up in the car with the oxygen, much like last night, except today I was a bit damp too thanks to the rain. We took Taid back to his hotel, then home, where I ate the brownie I bought at the Gloucester services and Christine and I watched last night’s Doctor Who. I’m very tired. 

 

The 5th of June. 

Rain. So much rain. I thought it best to stay inside. 90% of my day has been spent on the sofa, which has been so much better for my back. I can stand a bit more upright today. 

Most of my mornings right now involve trying to adjust to the daylight, creating a visor with my hands, listening to the news. I had to mute it today when Theresa May started her speech having a go at Jeremy Corbyn when she has LITERALLY BEEN IN CHARGE FOR SEVEN YEARS. Anyway. 

Mommy and Daddy went out about noon to have lunch with Taid, then take him to the service station where he was meeting his coach to Looe. Christine stayed with me (I was just not up to going out for the fourth day in a row) and she bought us lunch from the bakery round the corner. I had a chicken mayonnaise sandwich and a vast Belgian bun – really tasty and a good bake (as Mary and Paul would say) but really enormous. I was incredibly full afterwards. We noticed Pitch Perfect 2 has arrived on Netflix so we watched that while we ate and had a lovely time singing along (as did the crow that has been sat outside our window all day). 

I actually managed to do a small amount of crochet today for the first time in weeks – just a small pocket to keep my eye drops in (they have to be kept out of the light). Still, it is a start. I still have a doily to go back to but I’m not sure which hook I was using for it. Erk. 

Jesus Christ I am so fucking tired. Apparently we might have a venture out tomorrow. I want to stay in bed. 

The 15th of April.

Busy day! I am tired. I had to get up earlier than usual to make sure I was fully breakfasted and ready for the family who were coming to view Spike at half past ten. We decided it would be best if Mommy answered the door and I was already sat with Spike, so he was nice and calm when they came in, and I didn’t freak out the children with oxygen. The mum and older son came in, and Spike decided to hide to begin with, but he started to be a bit more forthcoming after a little while. He returned to his hiding place when we were joined by the rest of the family, but that’s only to be expected. After about an hour, he was out and happily playing so I’m pretty sure he’ll be fine. Just waiting now to hear when they want to pick him up!

Shaki came round briefly to drop off some paperwork and see Spike, and we had a chat about Cats Protection logistics. It is complicated.

I got some crochet done this afternoon, while Mommy was at Grandma’s and Daddy had gone to pick up Christine. I also got to watch one and a half episodes of the new season of iZombie which I didn’t know had started, so that was a pleasant surprise. Now the doily is finished, and Christine is home! Plus she has brought me loads of coffee, yum.

The 16th of April.

Happy chocolate day!

I have literally only just broken into my egg, although I only ate the medium sized bunny in the box, not the egg itself. I am fairly certain that my stomach just doesn’t stretch, so it is going to take me ages to eat the whole thing. For breakfast, I had one of the M&S toffee, fudge and chocolate hot cross buns with brownie butter and that kept me full up until lunchtime, which wasn’t until quarter to three. It wasn’t meant to be that late, but there were issues with the pastry in the tarte au citron we were having for pudding.

Grandma came for the day, and Becky and Alison came round to say thanks for looking after their respective cats and receive their Easter eggs. Spike was very antisocial and hid under the chair for most of the time they were here. Silly cat. I went to see him after lunch though, and he came and sat on me very happily, purring away. I don’t understand, but as long as I’m still his favourite, I don’t mind.

For all the time I was not eating, I have been crocheting a bear for Jenny’s baby. I’ve actually made the whole thing except the face, so I’ve been incredibly productive.

Two weeks down, one to go. 

The 4th of March. 

Another day of waiting. But I am finally on the respiratory ward. 

Crappy night. I managed to fall asleep at some point, got the pillows arranged in a way that was vaguely comfortable. Somebody took some blood, although I wasn’t entirely sure that had happened until I found the gauze stuck to my arm. I missed breakfast again and I didn’t really want to buzz someone just to ask for some bread, so I ate the Pom Bears that Mommy brought yesterday instead. 

By the time Mommy arrived, I had curled up in a ball and was having a micronap (which I suppose just shows that I’m definitely poorly because I can’t do that when I’m fine), so I sat up and we had some lunch. Sam, my nurse, came to tell me that I would definitely be going down to 516 today, but we had to wait for a man to go a nursing home so another man could take his bedspace and I could have his room. If I got down there in time, the suctioning would happen today. Hm. 

Becky came to visit, so that was a nice distraction from everything else being so rubbish, and she had bought me a great book full of pictures of pugs in clothes and making silly faces. I can look at that when I feel like I might burst into tears. 

She unfortunately did have to go home, as she and James were going up to see his parents, so after that, Mommy and I just sat and tried to kill time until it was time to move. Another doctor who I hadn’t yet met came in, asking how I felt, and I said apart from the obvious, I feel fine. Turns out that my CRP has gone up to 163 from being 58 on Thursday, so that’s quite a leap, and now I’ve been started on IV antibiotics three times a day through the cannula that’s been shoved in my left elbow, meaning that now neither of my arms are able to function. Putting my pyjamas on will be interesting. 

I was finally summoned to the new ward about half six, and now I am sitting on my bed, on a mattress that is constantly inflating and deflating different bits because it’s designed for people who are susceptible to pressure sores, but I’m just finding it irritating. Honestly I am on the edge of tears every time somebody talks to me because I am so frustrated by everything – the spontaneous pneumothorax, how stretched the system is, my stupid veins being difficult to cannulate, my right arm being off limits because it’s full of fluid (and nothing can happen with that right now), the fact that I have to take a little bucket of chest fluid and a cylinder of oxygen with me whenever I have to pee, I can’t bend my left arm because of the cannula and can’t do much with the right because it hurts the muscles around the drain…I just want my normal life back. It wasn’t ideal, but this is intolerable. 

The 5th of March. 

I am much less weepy tonight. It has been a very typical hospital Sunday in that not a great deal has happened. I was woken by the suction being attached to the drain bucket (it’s actually just a tube that attaches from the bucket to a system on the wall that continuously sucks, but if I need the bathroom I just pull it off the wall and put it back when I return), but I don’t know who did it because I kept my eye mask on the whole time. If I hadn’t, I would’ve been blinded by the light being switched on above my head so I’m so glad I have it. 

I watched Sunday Brunch, much like any other week, I was just deprived of coffee until Mommy came with lunch. She had also baked some cupcakes, which had fallen over in her bag so they are a little bit squished but still very tasty. Now I have a box of cupcakes so I’m going to have to start giving them to the staff because there’s no way I can eat them all. Plus, Gareth came to see me and brought a box of French Fancies and a bag of Maltesers! So I am overwhelmed with tasty foods. He stayed for a good few hours and we had nice distracting conversations about what’s going on in his life (incredible gossip from his sleepy Spanish town where the vet murdered his wife 😱), which was much nicer than just watching dreary Sunday afternoon tv which is what we would have probably been doing. 

The cannula in my left arm is doing surprising well. I thought the vein would have blown by now but it’s still going, which is a relief. I’ve got no idea where they’ll put another one in when it’s time to change. Not sure how long they’ll keep me on antibiotics as it’s not like I have any symptoms, they’re just going off inflammation markers. I shall talk to the doctors tomorrow – thank god we get back to weekdays and normal service can resume. 

Coughing makes the drain site hurt. Ack. 

The 2nd of February. 

It’s been a very busy day. As soon as we arrived at the QE, we bumped into John Higham from the dental hospital (there with a family member, not ill himself), and then Janet, who adopted Monica from us ages ago. She’s doing really well, climbing up onto their garage roof, yet when she was with us, she couldn’t even jump onto the windowsill. 

Andrew saw me super promptly, which was excellent. He showed me the pictures from the venogram, and it’s quite obvious that what he did should have worked. He doesn’t want to go back in immediately, which is understandable, and having looked at my arm, our first port of call is going to be a compression garment which he is trying to get organised as an emergency (it normally takes two weeks to get an appointment). I have to keep it elevated, and squeeze a stress ball a lot to encourage blood flow, and see him again in a couple of weeks, when we’ll talk about next steps if necessary. 

We were meeting Naomi for lunch, and there wasn’t time to go home and back again, so we went into town. I bought a new jumper with large sleeves to add to my current rotation and spent the book token I got for my birthday on Negroland by Margo Jefferson. 

We got to Strada first, and it was full of elderly people obviously going to something at Symphony Hall. When Naomi arrived, I gave her the bunny I made, and she was delighted. She was very interested to hear about my most recent Anthony Nolan trip and to talk about the charity – she’s learning more about how they work because she’s choreographing the new show being created about Kids Company that’ll be on at the Donmar in the Spring. Must go see it, it sounds like it’s going to be fascinating. 

I had pizza and a chocolate fondant, neither really worthy of photos but very tasty. She had to go at half two because she was seeing Love at the REP, and we came home where I have done very little except squeezed a stress ball. 

The 3rd of February.

Bleah, my cough is extra rubbish today. I can feel the gristle in my lower ribcage as the bones grind together. It’s really not very pleasant. 

This morning, I did the blog post I should have done yesterday, and I started taking some diuretics. We thought it was worth a try to get some of this fluid shifted, so today has also involved more peeing than is normal. Maybe they, along with the stress ball squeezing and arm elevation, will help the fluid. Heard nothing about the compression garment.

After lunch, Daddy and I went to see Sing. It was that or Hacksaw Ridge, and I thought I needed the light relief of singing animals. I was not prepared for the ten or so children who were there – at a two o’ clock screening on a weekday, there should not be loads of kids, no matter what the film. If they’re ill, they should be at home, if not, they should be at school. I had to shush them several times because their parents were not doing anything. 

Apart from the children, I did enjoy the film. Rosita is my favourite – I love her and her piggy power.