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The 2nd of October.

Christine’s birthday!

Up early, trying to find a bag to put the presents in and advising parents on fashion choices. Daddy was having a crisis because he didn’t feel like both parents could wear pale trousers or they’d look like twins. After a great deal of agonising, he got changed our he would’ve been sad all day.  

The train journey was uneventful, bar the moment just before we arrived when I realised that I had left the presents in the car. I was so angry with myself, I hit the table and wanted to cry but didn’t. We took a cab straight to Duck & Waffle and waited for Christine by the lift where it was very chilly. 

The lift took us straight up to level 40 (so very high), and we checked our coats and the wheelchair before going to our table. We had to have a lot of discussion about what to order because it isn’t a traditional menu. We all had a seasonal spritz, then some n’duja and Gruyère bread (I couldn’t eat it – too spicy), Dorset crab, roasted octopus, goat faggot, puy lentils, duck and waffle, seasonal vegetables, spicy ox cheek doughnut and dark chocolate brownie sundae. Everything was shared, except my pollock meatballs because I didn’t fancy the other small plates. The duck and waffle was my favourite. 

We finished earlier than expected so had an hour to kill before Dressed by Angels, so we went to Spitalfields Market. I spied a Konditor and Cook and felt the need for a brownie, only to find myself recognised by my old pal Lizzy Hathaway-White who I knew back before I became ill and we were supposed to go to college together. She gave us a free small Curly Wurly birthday cake and I bought four brownies, and it was all just wonderful. Pact coffee were doing a pop-up nearby so I got a flat white from there to get rid of the taste of the terrible one I had at the end of our meal. We bimbled through the market and I spotted a Bread Ahead stand where they had chocolate doughnuts. I had to have one. 

We did eventually get to the exhibition, where we saw so many clothes! Costumes from The Red Shoes, Sherlock Holmes, James Bond, Dracula, Downton Abbey, Doctor Who, Game of Thrones, Hamlet (worn by actual Cumberbatch), Dr. Parnassus (worn by Heath!), Titanic, Kanye jacket from the Brits, and the Lobby Boy costume from The Grand Budapest Hotel. 

Again, it took less time than expected. We had a wander around Brick Lane but then there wasn’t much else to do! We ended up saying goodbye to Christine at Shoreditch the station, and we hailed a cab back to Euston. We were really early for our train, so after getting some drinks, we sat around for an hour, watching people run for trains. I was so tired, I just wanted to get home and get my shoes off, as I could feel my right foot swelling. Once on the train, I plugged in my headphones and ate my doughnut, getting very sticky fingers.

The 3rd of October. 

Oh, I had a big sleep. I can always tell I’ve been in London because my cotton wool pad after cleaning my face is covered in filth and my breathing is worse for all the crap I’ve inhaled. Living there would require full-time oxygen in the house. 

This morning, I wrote about yesterday while watching Saturday Kitchen and catching up on Great British Menu. It seemed to take ages! Also got Christine’s presents in the post so hopefully they will arrive on Monday and she is going to FaceTime me when she’s opening them. 

After lunch, I finally got round to reading the paper, and I had to rinse my hair because it was so full of product. It’s not completely clean, but I can at least brush it now without fear of breakage. Daddy and I went to see The Martian at ten to four and it was lots of fun. There were some stressful parts which saw me clutching at my face, but the majority was good, clean, Mars hijinks. There was slight overuse of the word “luckily”, but otherwise no gripes. I liked the LOTR and Iron Man in-jokes a lot. 

I just watched everybody in the film and in the cinema moving around. Everybody who is ambulant. I am so jealous of them. I keep thinking “Why me?” and I hate that because it is futile. I just wish there was something that could be done. I will never get a transplant because in theory, my lungs won’t get worse, but there’s also no hope of them ever improving. Between a rock and a hard place is a hard place to live. 

 

The 20th of September. 

I think this is going to be a pretty short entry because I have done a lot of one thing. I woke up at quarter to nine but decided to go back to sleep for another twenty five minutes. Life could wait. 

I fed the chatty kitties once I found their food bowls in the kitchen, and as soon as I’d breakfasted, I started crocheting because I had to finish the thing today and I had an entire ball of wool to use. And that is what I did all day up until about half past three. I had a break for lunch and to wash my hair, then once I was done, I wrote up the blog. 

I went to hang out with the fluffies and had a major development: Harvey sat on me! It was very exciting. I had the armchair extended so the extra bit stuck out which he sat on first, so I stroked him for ages while he slept. After God knows how long, he decided to squeeze himself into the space beside me and rested his head and paw on my lap. I was so happy. Just got to get Hal on side now. 

The 21st of September. 

It’s got to be a good day when you wake up to the news that the Prime Minister put his penis in the mouth of a dead pig. What a leader. What’s on tv? The fact that New Street is all shiny. Guys, it’s just a station. 

I was at the GP this morning because I had a letter requesting my presence following Dr. Hewins’ letter. We say in the awful, germy waiting room for forty-five minutes until I was called in to see Dr. Bagchiu(who I haven’t seen for ten years, by the way) and discovered that basically, one of their juniors had read the letter and not my notes, so got terribly overexcited and called me in. In a nutshell, it was a colossal waste of time. 

This afternoon was Helen’s goodbye gathering, so we arrived at the Faith Centre to find tables heaving with cake, a lot of staff but no Helen! She kept disappearing. She was thrilled with her snood – I forgot to photograph it but it was a very pretty, soft, multicoloured wool. We had some cake and chats, and there was a brief speech and some flowers. I was surprised there weren’t more patients there – she has done so much for us, I am shocked that other people didn’t want to thank her. She is a champion of the vulnerable and the DWP will be the only ones that are happy she’s retired. 

The 16th of July.

Today has just been one of mundane, trivial shit that is frustrating and takes forever. Having updated my blog, I went to the iMac and set about updating the music on my iPod and backing up my phone. 

However, first I had to do a load of updates to the iMac itself, including a new version of iTunes. For some reason, this deleted the iTunes library, so I had to find it instead of redownloading everything from the cloud. 

Eventually I was able to start trying to back up my phone, but got the error message saying the phone had been disconnected (which was a lie). I restarted everything, did every job very slowly and finally, at about quarter past five, it was finished. Sorting my iPod was a breeze, thank God. 

Car isn’t back yet. Tomorrow they’re going to drive it up a hill and we’ll see what happens then. 

I just had a phone call from hospital saying as there was no clot in my scan, there was no need for more tests because the swelling was improving. Except it ISN’T, it hasn’t improved for THREE FUCKING WEEKS. I am back in clinic when we get back and I’m getting this fucking sorted because I don’t want to be dealing with this at Becky’s wedding.  

The 17th of July.

Well, I spent my morning waiting for the nurses to come and flush my line, and they finally turned up at quarter to twelve. They were here for quite a while, as one was being trained by the other, so it was all a bit slow. When they were finished, Mommy and I had lunch, then sorted out my clothes for Falmouth. The weather looks like it’ll be really mixed, but I can’t take jeans or boots because my right leg doesn’t really fit into them. 

Having done that, Mommy took me to the gym, where I didn’t do everything I usually do because one machine was out of order and another was just forever occupied so I gave up waiting for it. A man spat on the floor near me which was upsetting. Why do that? Can he not cope with the amount of spit in his mouth? I left shortly after that. 

I’ve not got much left to do for tomorrow. Last minute morning stuff which is just as well as we’re leaving at eight. 

The 31st of May.

The three lorazepam worked, eventually. I’d like to do it again tonight but I’m not sure it would be wise. I still have no voiceKathryn Retains Some Independence at all, which is displeasing. I thought it might have started to come back by now. I woke up from my chemical-induced sleep about ten, then I watched Sunday Brunch and did a blog post – nothing of note.

This afternoon, I’ve been incredibly boring but I’ve finally been able to back up my phone! Considering that hasn’t happened since the start of December, I’m glad it’s done.

I’ve been feeling somewhat despondent about my lack of love life. As much as I make out like I’m okay with it, that it’s my decision, it’s only because my hand was forced. No sane person would want to be my boyfriend, and the only way to even be able to kiss someone ever again would have to be with some random drunk stranger, but when does the opportunity for that ever arise? So here I am, forever alone, with only my memories.

The 1st of June.

I had the lorazepam. I figure as long as I am coughing this much and nothing needs to be remembered, I’ll carry on. I won’t take it on Tuesday night because I want to remember going to The Hand and Flowers on Wednesday (which I am super-excited for). 

I got up late again. I was supposed to be at the chiro today but there is no point while I’m still coughing. Next week will be incredibly painful as I can already feel how tense my neck is.

While Mommy was at Grandma’s, I shaved and moisturised my legs as I’d like to wear a dress on Wednesday. I also spent some time trying to sort out the Photo app on the iMac. I have to repair the library and ugh it is a bore.

I was thinking about how if I’m ever going to go out by myself again, I’m going to need a powered wheelchair. When I’m being pushed, I feel like a giant baby, like someone who needs to be cared for. At least if I was getting around under my own steam, I would feel like an independent person, not a patient in a chair. We can’t afford the chair that would be best for us (one that we can lift and fold) so I’ve set up a GoFundMe page, and so far people have been so generous. Here is the link if you would like to contribute: Kathryn Retains Some Independence

 

 

 

The 27th of May.

Very, very tired. Woke up at 5:25 coughing and got up at six, because we needed to leave early to deal with rush hour traffic on the way to the station. All the assistance stuff went very smoothly, and Heidi met us at Bristol. I have her Rufus the Lion (he’s a bad plumber) and we went to Real Adventure, the ad agency she works at. I still have no voice, so I waved at everyone and sometimes whispered.

Everyone gathered in a wee auditorium and the was a little presentation, Mommy read a short speech that I wrote, there were some pictures from fund-raisers they’d done like running marathons, doing a Tough Mudder, and eating lots of doughnuts, then the cheque of over £4600 was handed over. It feels so good to know that at least 46 donors will be registered and possibly lives saved with money raised in my name.

Afterwards, Heidi took Mommy and I for lunch at Hart’s Bakery. I had a flat white, a ham hock and cheese toastie, and a slice of toffee and banana came. It was all incredibly delicious, and I am still full! We arrived back at the station really early, so we just got magazines and more coffee and people watched until it was time for our train. I had several major coughing fits and an old lady offered me a sweet but I politely declined, we went past a field of tiny horses and also Hallfield so I was really happy, then we got a taxi home.

Now I am in my pyjamas and pooped.

The 28th of May.

I took two Zopiclone last night and they didn’t even work – I just can’t stop coughing and it is driving me round the bend. I think I slept a bit this morning, but it’s so hard to tell I get as I wake up coughing so much. It’s the worst kind of relentless tickly bastard cough that just taunts you. 

I bought some Hudson sandals in the ASOS sale back in April, but when they arrived, they were too big, and were sold out in the next size down. I was really annoyed because they looked really good, so have been hunting for them ever since, and found some on eBay for £20! Apparently the heel on one is slightly higher but I can’t tell, and I tried them on this morning, and they fit, so hurrah!

Becky came round this afternoon as I haven’t seen her for ages, so I communicated as best I could and it was nice. I’m not expecting my voice to return until the weekend at the earliest. I hope it doesn’t take too long – I’d like to be able to order my own food at The Hand and Flowers next week.


 

The 19th of May.

I think I’ve had a productive day. Basically crocheting a lot. The weather has been awful – this is not May weather, I find it unacceptable and would like it to be warm now please. This time last year while we were in Lyme, I was able to wear short sleeved tops and skirts! Today, I’m still wearing a thermal barrier vest and a jumper.

I started work on Donna’s duck, had lunch, got part-way through the body, then Mommy went to see Grandma. While she was there, I went and shaved my legs as despite it not being particularly warm, I will still have to wear skirts on Thursday and Friday because I’ve got photopheresis then.

Afterwards, I finished off the duck, so now I can start on a mini Frank for Theo. I’m adapting a pattern for that, so I’m just hoping it works. I think it should; it’s not too complicated.

Mommy’s voice seems to have made a slight improvement today – she’s not had to whisper quite as much. I had a killer headache for much of the day – we took my blood pressure and it was 170 over 114, which is somewhat high! I need to talk to someone about a new BP drug, just one that doesn’t massively inflate my feet. 

The 20th of May.

Ergh I feel kind of shit and am really not looking forward to my early start tomorrow. I didn’t sleep brilliantly, had weird dreams about it being my birthday and having a party where a bunch of people had been hired to be my “friends”, and to make me like them, they wore loads of socks, and none of my actual friends were invited.

I had the hygienist at 10:50, and it wasn’t much fun. My teeth are all fine, but I have wear on some of my gums (I guess I brushed too vigorously?) and the huge GvHD ulcer on the inside of my right cheek. So a lot of it was really sensitive and I was glad when it was over.

This afternoon, I was supposed to have liver clinic, but shortly after we’d left, I had a phone call saying Dr. Ferguson wasn’t there, so I asked them to reschedule as there isn’t much point in me seeing anyone else. I could’ve then gone to the gym, but it seemed neither my mind nor my body were up for it, so instead I’ve been curled up, crocheting, and hoping the ab muscle I’ve pulled stops hurting soon.

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The 9th of May.

I woke up this morning and for a brief moment, the election hadn’t happened and everything was good. Then I came back down to earth. Also, it was 5am and I couldn’t get back to sleep so I was not thrilled. Mommy and Christine were both up early too, but not to quite the same extent.

Daddy went to buy papers and report on whether the café round the corner was open, which it was, so I went for coffee and breakfast while I read my Guardian. I had American pancakes with maple syrup (very fluffy and tasty) and two flat whites (better than Costa but not excellent). As I was leaving, I ran into Mommy and Christine who were going in search of a scone. I explained that my lungs were being totally shit, and I was going to need the wheelchair to go anywhere. Mommy went to the house to get it and Daddy, and we trundled down to The Town Mill Bakery where they shared a brownie and a giant Eccles cake, and I watched the people assemble various lunch dishes. Mommy and I then went to Amid Giants and Idols where I had another fiat white (good), but they didn’t appear to have any lunch, so we went all the way back down the hill (I walked – rolling would have been terrifying) to The Courtyard Café where I had a dressed can sandwich (super tasty) and Mommy had Welsh Rarebit.

We made our way back to the house, where I have watched Cats and Dogs (insane) and finished Them by Jon Ronson. Tonight we’re having fresh scallops, prawns and sole. I need this.

The 10th of May.

I managed a better sleep – I wasn’t awake at four am for which I was grateful. I didn’t go out for breakfast, but Christine did, so I got her to bring me back some coffee. I spent the morning half-watching Sunday Brunch, starting to crochet the body of Rufus the Lion and reading the new Jeffery Deaver.

We’d booked a table at The Millside Restaurant for lunch, where I had asparagus and pea risotto and vanilla crème brûlée with lemon shortbread. There was a very loud family on the table next to us, but they had a fun baby who I made faces at so I didn’t mind too much. 

After returning to the house, I have finished both Solitude Creek and the body of Rufus, so I am very pleased with my productivity. Daddy and Christine watched the Grand Prix (not particularly eventful) and now we have Murray vs Nadal on. My line needs flushing tonight – blood is leaking down. It’ll probably get done during the Baftas.