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The 28th of July.

Ugh I am so frustrated. I spent my entire afternoon working on some crochet which I realised was twisted so I had to unravel the whole thing and argh.

The rain has been brief, and I haven’t even needed a cardigan. The big storm has been somewhat of a let down, at least here.

It has been pretty much crochet all day. This morning, after Saturday Kitchen, I went to sit with Dolly and watch some more of Zoo while I worked on the cardigan some more. After the first episode, I came out to have lunch while we caught up with 8 Out of 10 Cats Does Countdown from last night. During that, my wool for the dress arrived. Put the cardigan on hold; that can wait.

So I then sat for several hours, finished Zoo (ambiguous ending? That’s brave) and saw a film called Happy Death Day. In this time, I worked up a gauge square, undid that, did the foundation chain which turned out to be too small, did it again, marked each fifth chain, thought I’d got it sorted, did the first two rounds, only to find I’d fucked it up. Start again. Sigh!

The 29th of July.

I am wearing socks for the first time in weeks. And a cardigan. The rain has come; welcome back ye classic British summer.

Most of the day, I have been crocheting. I redid the bit I messed up yesterday, and checked it fits over my head, then I just powered on. For the morning, I sat in front of Sunday Brunch, then while we ate lunch we got up to date with The Handmaid’s Tale. I was expecting to do a big cry from what I’d heard, but the separation was kind of predictable. Was not expecting Nick’s abduction though. What is June going to do now?

After lunch, Dolly was mithering, so I went to sit with her and carry on crocheting. We listened to Gardener’s Question Time and 20,000 Leagues Under The Sea which was all very relaxing. I got to the end of the round I was working on, then decided to take a break. Daddy had downloaded Rayman 2 onto the PC, and I was very excited to give it a try. I played it a bit on my phone when it was on iOS, but it’s not the same as the big screen. I beg to get used to doing it with a keyboard though, because we used to play it with a joystick. It’s tricky! But I got through the first two levels. It’s like being ten again. 

The 11th of July. 

So Theresa May will definitely be Prime Minister. The House of Commons tomorrow is going to be just fascinating. The weather is going to be appalling it seems, which puts the kibosh on what I had planned to wear. Still don’t know and I really need to decide before I go to bed because in the morning I will not have time to be getting dressed a thousand times. 

This morning I did a blog post, getting back into the habit (hahaha), then after lunch, Mommy and I went into Sutton. I needed to buy some boxes to post things in which was tricky because I’d measured the items in inches, then had to convert those into millimetres and remember which was depth and which was width. Basically it was an arse but I got them in the end, hooray. We went to the station to pick up my tickets for tomorrow, but the machine there was broken, so we tried Wylde Green on the way home, where the man in the booth was very obliging. 

Shortly after arriving home, Ian from Anthony Nolan rang to speak to me about my talk on Friday. That sent me into a panic because in my head it was on Thursday, so then I had to check that I’d booked my tickets and assistance for the right day! Thankfully I had, so then we could move on to topic. I ran them through what I’m going to say, and they had some thoughts of things I need to add in. Will do my tweaks, then email them the bullet points!

The 12th of July. 

I have had an utterly smashing day. Had I not been bothered by what felt like a scratch on my eye all day which was incredibly painful and irritating, it would have been pretty much perfect. Well, also better weather would have helped. Less rain would have been ideal. 

It began with Michaela being an absolute darling and coming into Black Sheep early to cut my hair before my trip. I messaged her in the week because I was desperately unhappy with how it was looking, so she shuffled things around and fitted me in because she is wonderful. I want to grow my hair, so I really needed it shaping into a style which can be grown out. The back has been shortened and the fringe cut back in to make the front bits look longer and even out the length. 

Went straight from there to New Street where I arrived surprisingly early, so I picked up a paper (the self-service checkout machine gave me all my change in 5ps, the prick) and went to wait in the assistance office. I got taken to my train and settled in for the journey. I tweeted Euston to let them know I was on my way, but then we arrived early and the train manager was by my door so he sorted the ramp for me. I saw the assistance chap as I was going up the platform, and he explained that he’d been helping a blind lady, which was all fine because of our earliness and the Virgin man being there anyway, so I was not upset with them this time. 

I got in a cab to take me to meet Lauren in Covent Garden and the rain was torrential. Ghastly. He dropped me off as close to Le Pain Quotidien as he could, and when I got inside, it was crazy busy. At first they did not seem keen to let me wait. However, I managed to charm them and five minutes later, I had a table!

I ordered a flat white and an orange juice while I waited for Lauren and considered the menu. She appeared, and we ordered some food. There was much to catch up on, like my x-ray saga and the horror of her masters course, and I complained throughout about my sore eye. I haven’t had pain this bad since I had the eye GvHD and had to live in the dark for a month because all light was intolerable.

We paid up and had about an hour before I needed to get a cab. We wandered around Covent Garden, and ended up in the Charlotte Tilbury store where the staff were very helpful in getting my wheelchair in and out. I bought some lip scrub and they gave me many free samples! Excellent. 

It was time to go, so I looked for a Hailo taxi but there were none, it seemed? And an accessible Uber was going to take twenty minutes to arrive, so I thought I’d just GoogleMaps it in the chair. This was going fine until the rain came down again and I got lost. Very stressful. I thought I’d give Hailo another go, and thank God, one was nearby. He got there quickly and I got in as fast as was humanly possible. He was quite a new cabbie, but he got me to Westminster in one piece. I then had to race 100m down the road in the pissing rain and join a queue of damp people, waiting to go through security.

My bags were x-rayed and I got patted down while in the chair, then I just carried on through! I sidled up to a man in uniform, and he took me the secret wheelchair way to Dining Room A. I met Cassie and Simon from Anthony Nolan and the photographer. We were all bemoaning the weather, then an MP arrived thinking he was late when he was in fact early, so I had a kind of dry run talking to him, he had a photo, then he had to run off to vote. Will and Amanda, two of the other Young Ambassadors, arrived and we had a chat with the MP for the Isle of Wight who was very nice and asked a lot of questions which was pleasing; I think he had a genuine interest.

The room started to fill up, and I suddenly realised that in front of me was Yaser Martini! I jumped up from my chair for a hug and possibly one of the worst selfies in the world. He introduced me to Seb Casalotti who is the brother of Lara who there was a massive campaign to find a donor for. We were all grieving over the state of the world when we were joined by Georgie Ireland who is one of the daughters from the Give Our Dad A Bone campaign. Their story didn’t have a happy ending, but they found solace in that they made a huge difference for people with his kind of cancer. We talked about hating hearing/watching ourselves, and stealing clothes from our sisters. She was going to get into trouble over the skirt she was wearing when she got home.

I noticed Ben (from Anthony Nolan) and Yaser were discussing how it is desirable to get a slightly imperfect match to get some GvHD. I was just about to share some photos of my skin (nothing too graphic) when speeches began. First to speak was Mark Tami, Labour MP and co-chair of the APPG. His part was only brief, more to introduce Seb, but he did mention that his son had a transplant which I didn’t know. Seb started with a thank you video from his family, then spoke very eloquently about his gratitude, but also his hopes for improving the education about stem cell transplants, especially within schools and colleges, so we get young people wanting to sign up to be donors as early as possible. Then Richard Davidson, one of the directors of Anthony Nolan had his turn, and he thanked everyone for coming, spoke a bit about the report, and introduced me and the other Young Ambassadors for people to come and speak to about our experiences. I was immediately sought out, and from then on was telling the story! I was able to speak to Mark Tami and we discussed opiates and how he is very keen to do more to support mental health post-transplant. I was really happy to hear him say this because mine has been fucked up beyond recognition but it isn’t really even mentioned before you go through it. I had a conversation with a girl from Anthony Nolan who works in communications, and I ended up discussing with her an app I have which shows me where I could get good coffee in London, as she sometimes finds it hard to come by. Now she can have lots!

The event wound down, and we were eventually chucked out by someone in uniform who had to tidy up. A man was found to escort me back out the stepless way, and he was very fancy, in tails an’ all. Once I had escaped, I Hailo’d a taxi, who accepted, but then called me to say that it was going to take him ages and basically, he didn’t want to come, so he cancelled the job. I went back to where I’d just come from, where there was a policeman. I explained what had happened and asked if he could help. I expected him to maybe call someone who could call a cab as I presumed they would have some kind of service? But actually, he went and stood on the street and waited for one to come along that he could hail. And bless him, he stood out there for about twenty minutes while I waited by his box and tried to see if I could spot anyone I recognised. I saw Stephen Kinnock, but that was all. Finally, I heard the policeman’s whistle and I sped out to get in the cab after thanking him profusely. 

The journey back to Euston took a while but I expected it to so there was no stress, I had aeons. As soon as I got there I went straight to Boots to purchase eye make up remover and cotton wool pads to relieve my agony when I got on the train. I picked up some magazines and Pom Bears, and I was barely in the assistance office before they were telling me what platform I needed to be at. The train was sponsored by the new Independence Day film, so was covered in huge pictures of Jeff Goldblum. Fun!

As soon as I was seated, I cleaned my eyes and frankly I am not sure how much it helped. I just ate my child crisps and was thrilled to be able to block out all the light on the way home. 

The 13th of June. 

These kittens are such rascals! Well in fairness, it is just Gabe. I was doing their breakfast this morning and he would not stop climbing my leg, so I had to put him in the cage until I’d got it in the bowl. The other two just wait and play, but he is a monster. That was a new plaster before I’d even had my coffee! Still, won’t be with us much longer – adoptions are all arranged for Saturday morning. 

I let them run around until lunchtime because it was obvious Gabe needed to let off some steam and be mental. Today’s new favorite game was carrying around a bit of masking tape in the mouth. They got very possessive over it! Don’t want actual toys, no, bits of tape please. I despair. 

This afternoon, we went into town so I could get some chocolates that I’d seen and wanted to give Daddy for Father’s Day. While in town, we also went into Boots for necessities such as lip balm, mascara and MORE PLASTERS. It’s been a long time since we needed so many. 

When we got back, I got to start some real fun. The PetPlan training details have finally been tracked down, so I spent a thrilling chunk of my day learning about pet insurance. It is a fascinating world, let me tell you. But it does now mean that when we do this adoption on Saturday, Shaki can sign me off and I can stop having to coordinate quite so many diaries!

The 14th of June. 

I was all set to go to the gym today, but some rather apocalyptic weather put me off. Never mind. 

It didn’t begin with a downpour – this morning was fairly pleasant, even sunny at points. So I put my leggings and hoodie on, ready to try my first workout in weeks this afternoon. I wrote up a blog post and finished off the tail of the dumpling kitty. 

We had lunch, then Mommy went to take Grandma to Fellowship and I went to let the kittens run around until I needed to go out. However, while they were chasing each other, the rain started, then the thunder and lightning. It got very dark, and the kittens were fascinated. Couldn’t tear them away from the window. 

I watched the rain and thought “Do I want to go to the gym more than I want to not get drenched?” No, I did not. I texted Mommy to let her know, and she and Grandma had binned off Fellowship too, so she was just waiting for a safe time to leave. 

I got changed into warmer clothing, and went to let the kittens run around some more, so they were thrilled. After two iZombies and a Fringe, I left them and decided to put the dumpling kitty together while we watched the programme about the Children’s Hospital. We saw Prof. Kelly, my liver consultant, Paolo who is my surgeon, and Monica, who is a liver transition nurse. I think that was it from my team? More to come, I am sure. 

The 13th of May.

It has been a glorious day, weather-wise. I woke up fairly early but that was okay. I had breakfast here, then took Her by Harriet Lane to The Galley to read while I had two flat whites. Mommy came to show me the stuff she’d bought, then went to get the wheelchair and we bimbled down to the sea to kill time until we met Daddy at The Courtyard Café at one for lunch, I had wild garlic fritters with a poached egg and salad. The coffee came looked good from the outside my but we saw a slice and the crumb structure looked quite tight so we were glad we’d been too full to have any.

This afternoon, we went for a stroll (roll) along the cobb and back, then bought gelato and brought it back to the house to eat on the deck, I had a scoop of chocolate sorbet and one of salted caramel gelato. I had a tiny brain freeze but it was worth it. I stayed out on the balcony for some time, absorbing the warmth through my jeans and suspiciously eyeing any seagull who flew overhead and might have shat on me.

Tomorrow will be packing and having another main meal at lunchtime, but I’m not sure where we’ll go as it’s supposed to chuck it down.

The 14th of May.

Today has been very much an inside day. It absolutely pissed it down for most of the morning, so I’ve been watching TV and sorting stuff for packing. Daddy got me a coffee so I didn’t have to venture out in the wet, and after This Morning, Mommy and I went to get pasties for lunch, as the rain was nearly gone by then and we’ve not had a pasty yet. I had a sweet potato and spinach one which was spicier than I expected, but I coped. My mouth is pathetic.

This afternoon, Mommy and Daddy went out, but I had no inclination to, so I stayed here and made all four of Rufus’ legs. We’ve been trying to decide what to do about food tomorrow as our train from Axminster to London is 12-3 so we’re still not sure how we’re going to work lunch, but we’ll meet Christine and Kim at The O2 at six and have dinner there. I’m so excited!




The 28th of March.

There is not a great deal to say about today as it has been driving to Wales for the most part. I got up at nine and we all just did basic morning things plus packing before setting off. We stopped at the Starbucks near Oswestry for lunch where I had a ham and cheese toastie, and got an oat and Nutella cookie for the rest of the journey which ended up being disappointing. We saw loads of frolicking little lambs on the way, in fact there are some outside the window of this house we’re in. It’s one my Aunt and Uncle have rented but they aren’t arriving until Monday, so we’ll be here tonight, have lunch with.Taid at The Hayloft, then drive home. I don’t think I’ll have lamb though.

I have been thinking about my “terminal” status and I think I might change that. By all means, I’ll still did before I thought I would; something is bound to get me. But I’ve lasted a lot longer than was expected, and why can’t I carry on? So long as I take care of myself the best I can, I think I could have maybe a good couple of years? Maybe I should be more optimistic.

The 29th of March.

Well both my parents had terrible nights, what with the wind and the downstairs neighbours apparently having some sort of race at about two am. I slept through all of this because I had a Zopiclone as I didn’t think I’d sleep well in the incredibly squishy bed.

We made a mad dash from the front door to the car in the pissing rain to drive to Conwy for actual coffee before picking up Taid to go to The Hayloft. That was all perfectly pleasant – Taid and I had the same meal of vegetable soup, then roast beef. The soup tasted mainly of tomatoes, but the beef was good.

Mommy and I left the table to look at the food shop while Taid and Daddy finished their coffee/beer and paid. We got some presents for Christine and Grandma, before going back to Taid’s house, where the piles of papers and post have grown even more. Now, I’m not saying he’s boring, but there was a half hour conversation about rubbish and recycling collection. He always says I’m quiet but that’s because I’ve got literally nothing to say on the topics he brings up. Daddy tried to fix his hard drive recorder but the only thing to do is format it, which Taid doesn’t want to do.  

We left just after four, only stopping so I could get water and Sour Skittles. Home about seven, and new I am trying to get warm and watching The Big Painting Challenge. Tired.

The 7th of July.

Today was not quite as good, but I am still happy this evening. I only had about an hour of sleep, so I’ve been awake since about quarter past two and am really rather droopy, but am coping.

Mommy and I went to Tom’s Bakery for breakfast where I had a large pain au chocolat which was yummy, and we bought some rosemary and sea salt foccacia, a pain aux raisins for Daddy, and a blondie for my pudding tonight. Then I took back to New Look one of the dresses I got in Exeter as it was too small (couldn’t expand lungs), bought some backless sandals from Clarks so my heels wouldn’t hurt so much today, and some dextrose tablets from Boots for when I flag, before buying a newspaper and arriving at Espressini just as Rupert was clearing what is now my table. I stayed there all morning and had lunch there of a chorizo, mahion cheese, lettuce and tomato brioche roll (I took the tomato out). Daddy came to join me for a bit and we talked a bit while reading our respective paper, then he felt a bit cramped and left. When I was finished, I went for a bimble to a couple of vintage shops and checked out Stones Bakery where the cake looks good. I was continuing to explore when it started to rain and did not cease, so once my feet were very damp I decided to call it a day and come home.

I watched some tv with my parents and did some puzzles, and calculated that if all my new Twitter followers joined the organ donor register, up to 144 people could benefit.

I hope to sleep better tonight.

The 8th of July.

Hm well the skin on my hands is starting to to misbehave so we’ve had to bring the steroids back up – 7 today, but I’m not happy with them tonight so going back up to 10mg tomorrow. It’s hugely frustrating and we didn’t bring the steroid cream because we I said we wouldn’t need it and I am stupid.

I spent my morning at Espressini again, although my table was taken but Rupert came to find me as soon as it was vacated. I read my paper and as I’d had a slightly more decent night (I took a Zopiclone), I tried the decaf which was nice but it did feel like something was missing? I took a last flat white to go and set off in search of lunch.

I walked a very long way (for me) and ended up in a shop called Dizzy where I tried on loads of dresses which made me really sweaty and my hair was a total mess by the end. I bought two dresses and a top, then it was raining outside so everyone’s hair looked a bit shit and I felt better. I also was happy with my outfit choice of jeans and boots as it was supposed to rain and had been warm and sunny until then!

I had lunch at a place called The Meat Counter, and just as I’d ordered a pulled pork “burger” and sat down, Mommy texted to find out what my plans were, then she and Daddy came to join me. Daddy and I wanted gelato but not immediately, so we went there via various shops, doing a lot of “sweep-browses”, except in the bookshop where I bought five. I was close to also buying all the Moomin books. Mommy took them home while Daddy and I had gelato except I had mango and lemon sorbets, and will return for gelato another day.

Twitter has been great today.

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Breakfast.

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Cheese straws! Pastries!

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Saffron buns! Other buns!

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Rosemary and sea salt focaccia!

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So much fresh bread!

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Espressini again/

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Yes I bought.

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The Meat Counter.

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So greasy and delicious.

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A palate cleanser.

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So much choice!

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All the books.