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The 18th of July.

I love days like today. I live for them.

I went to London for the annual summer reception for the APPG for stem cell transplantation at Parliament. The journey down there was pretty uneventful; I just drank my coffee and listened to Surf Music by Paul Williams (thank you James Acaster for that recommendation). The assistance people were pretty timely upon my arrival for once, so I got out of Euston and made my way to Albertini, where I was meeting Laura for lunch. We have been friends for yonks, since we were both on LiveJournal about fourteen years ago, but have never had the opportunity to meet. I thought, seeing as I was going to be in town and she works near Euston, it was an ideal time for us to get together. She was already there when I arrived, and we got seated and set about picking our meals. I went for a pizze bufala (basically a margherita but with big blobs of mozzarella and extra basil) and she had mushroom pasta. We did a lot of complaining about the government, especially Boris, the Love Island recruitment process, what she does for a living, what I do instead of making a living, plus what I was going to be doing this afternoon. It was only a shame that we didn’t have longer, but she had to get back to work and I was supposed to leave about an hour to get through security at Westminster, so we said goodbye with a promise to do it again when we have more time.

I beetled up the road to St. Pancras because it was the closest taxi rank, and managed to poach a cab that had just dropped someone off. He took me down, and was able to stop the closest to where I needed to be, out of the three times I have made this journey. It turned out I didn’t need huge amounts of time to get through security, because a woman sent me down a different ramp that bypassed the queue, so I just popped my bag in a tray, negotiated the metal detector, and got gently patted down. I got into the main entrance, where I expected to have to twiddle my thumbs for the next hour. However, they had a small but interesting exhibition about women’s suffrage, so I looked at that, then found some Anthony Nolan people at the other end and we found some very agreeable members of staff to get me to the terrace pavilion via the accessible route.

When we got there, we weren’t quite allowed in yet, because they were still setting up the cakes and stuff, so we had to hang around in a little vestibule until we were able to enter. Once enough of us had arrived, whatever cordon was in place seemed to be lifted, and we were able to spread out. I said hello to everyone, then sat for quite a while with Laura, who works with Lucy (who helped me with the gig), and we talked a lot about carbs and the gym and stray cats wandering into our houses.

This year I did want to make a point of talking to more people, because for the past two, I have ended up only spending time with one or two and just talking to them for ages which is nice and all but I thought I would make a change. I made a beeline for Simon Bostic, who was the first ever recipient of a stem cell transplant from an unrelated donor. It was because of his story and his mother’s campaign to find a donor that Shirley Nolan was inspired and began what we know to be Anthony Nolan today. I wanted to find out more about him, and his life now, and (maybe rather egotistically of me) thought he would be interested in meeting me, as the first recipient of a completely unmatched donor. He and his husband were pretty shocked to learn the story, but once we’d got through that, we talked more about after effects, and how a transplant isn’t a magical cure, and chronic lung disease. His capacity is worse than mine, but I think his gas exchange is better because he is able to stand up and talk simultaneously, which I cannot do without getting breathless, even with oxygen. Lungs are weird.

Suddenly, out of the corner of my eye, I spotted someone that looked familiar. I turned to look, and to my utter delight I saw Manos! He was a reg at BCH when I relapsed, and was there all through the transplant and bad GvHD. I can’t remember exactly when he left, but he was then at the QE when I transferred there, and now runs the haematology/transplant department at Heartlands. He seemed equally thrilled to see me, and we had a massive hug and started reminiscing. I caught him up on how I am generally functioning now, and he told me about the developments on the ward where he works, and how he thinks about me when people want to give up on a patient, but he refuses to because he has seen impossible things happen. He gave an example of a patient that he has not forsaken even though everyone else wants to, but now that guy has gone to Israel to have a drug that he couldn’t get here, and now Manos is going to give him a transplant that means his children won’t lose their dad. Then he introduced me to Prof. John Snowden, Chair of the NHS England National Specialised Commissioning Clinical Reference Group (CRG) for BMT, who was one of the speakers. He’s also interested in people who’ve had solid organ and stem cell transplants, so we could have talked for a long time. However, he couldn’t chat much because he had to talk to the organisers about his speech and how it was going to run. My fellow transplant recipient and journalist friend Hannah was there, so we got to hang out again which was lovely, and I met Lisa Nugent, the head of donor recruitment for DKMS along with their head of PR, Nigel. We went to get drinks, and were going to continue our conversation when it was time for speeches. Mark Tami MP said a few words, then introduced Prof. Snowden. He talked about how long the NHS has been doing stem cell transplants, and about how we still have so much more to do, especially in our efforts for BAME patients, whose chances of finding a donor are monumentally worse than those of white, Northern European heritage. He also spoke about how the NHS is always at the cutting edge of transplant science, and what is being done with CAR-T cell therapy. Then he introduced Simon. He spoke about his mother’s efforts to find him a donor, to save his life, and to save her and other parents from the agony of losing a child when their death is preventable. He also talked about how magnificent the NHS has been in continuing his care after transplant, right up to this day, because the transplant is not the end. But hopefully it will be better for our final speaker, Farida Dedes. She was a student at Brunel, and became ill at the end of her first year. She was diagnosed with ALL, and was told she was headed straight for transplant, if they could only find her a donor. They really struggled, because she is black, and eventually she was told that they were going to give up searching, because nobody could be found. However, a month later, a donor popped up in Brazil. Amazingly, she donated her cells, and Farida had a successful transplant. She is now back at university, and will become president of the Brunel Marrow group next year, with the aim of really highlighting the necessity of adding more BAME donors to the register, because she knows first hand how devastating it is to be told one can’t be found.

I found her afterwards, because I identified with a lot of her story (mainly the sudden diagnosis and immediately living in hospital, and the need for transplant straight away) and we talked about having your life kind of ripped from under you like that. We were joined by Max Tami, the MP’s son, who also had leukaemia, but I know has also had issues afterwards. I think it was good for him to meet some people who understand.

We were then warned about the fact that it was nearly time to go (the people at Westminster are really arsey about you leaving the room literally as soon as the event has finished), so I made a move to say goodbye to people. I made sure I hugged Manos again, and got a photo with Simon to document our historic meeting. Then we started getting kicked out, except I couldn’t leave and nor could Simon (from Anthony Nolan) because he had a big thing on wheels that needed ramps too. They dicked about for ages, and only after half an hour of us getting frustrated, did the man in charge finally decide to get useful, mainly because I think he was worried we would wander off to places we weren’t allowed.

By that time, traffic was pretty bad, and I knew it was going to be impossible to get a taxi nearby anyway, so I started heading up Whitehall with the intention of finding a reasonable place to get a Hallo from. However, everywhere was too busy/inaccessible, and the route back to Euston was fairly straightforward, so I ended up just bombing my way back there, straight up Charing Cross Road, then right onto Euston Road, arriving at the station just in time for the platform announcement. I quickly bought a drink, a cookie and a copy of New Statesman, then met the assistance chap at the train and was on my way home.

The 19th of July.

That has been nowhere near as interesting as yesterday. I gave myself a little lie-in, although I am still tired this evening, got dressed, had coffee, breakfast. I started writing about yesterday, such has taken me all day, on and off.

I took a break so we could wash my hair, and I had to get changed, because the dress I had put on its currently too small. I’ve put on a couple of inches around my waist and I would rather they were not there, so I’ll have to get back into the gym.

We had lunch and caught up with Love Island (what a massive hypocrite Dr. Alex is), then Mommy went to Grandma’s and I sat with Dolly, trying to concentrate so I could finish writing. She was actually out this afternoon, sitting on the windowsill, so I occasionally chatted to her, and gave her some Dreamies.

When Mommy got back, she found some wet stuff at the bottom of the stairs, so she went up to investigate, and found a magpie freaking out in Christine’s bedroom, shitting everywhere. Thankfully she was able to get it out of the window without getting injured. Excitement, but a visitor we could have gone without.

When that was over, I went back to Dolly, and I got to stroke her! Finally reached that stage again. 

 

The 30th of June.

I hate writing about holidays because usually so much of it is “We did this. We did that.” And it is not interesting to read.

I didn’t have a good sleep because the floors of upstairs are really creaky and loud, so if someone moved, I heard it. The plumbing is also really noisy, as are all the birds. Plus, the bed is not super comfortable.

This morning, we had a trip to Leiston to go to a wool shop, because I forgot to bring the wool I need to assemble the blanket. I did some Googling and that was the nearest place. They actually had exactly what I wanted, then I ended up having quite a long chat with the shop owner because she was on oxygen and she had a compressor which is something I haven’t tried but will probably need in future.

Then we went to Snape for lunch, and ate in this café situated in a large homeware shop. Three of us had the fish platter, and Daddy had a vegetarian breakfast. The fish was lovely and there was plenty of it, but the bread was dry. In the shop, there were loads of expensive mugs I wanted to buy but didn’t (£21? Fuck off) and nice furniture, but all I purchased was some coffee.

Back in Aldeburgh, I got some disappointing gelato, saw a lot of good dogs, then came home to start putting the blanket together.

The 1st of July.

Fuck, my back hurts so much this evening. Maybe it’s my fault for sitting and crocheting all day. Or the sofa’s fault for being unsupportive. Today is my first day of what should be an effective dose of CBD capsules so maybe soon I will feel some difference. I really fucking hope so.

I had a better sleep now I have earplugs, so that’s been a plus for today. To be honest, I’ve only moved from my crocheting spot to eat lunch and go to the ice cream shop. A different one to yesterday, and much better. I will go there again. I’ll also try coffee from there because all the coffee I’ve tried so far has been poor.

That’s it! I’m being industrious because I want to get this blanket done, then I don’t have to worry about it. I want to get it done while we’re here because I don’t think I’ll be up to it after my lipo.

The 12th of June.

Happy Birthday Daddy!

First thing, I gave him the presents I bought him yesterday. I had ordered some other stuff but it didn’t look like it would arrive in time, hence the shopping yesterday. Of course, they were actually delivered today. Oh well, he can have them for Father’s Day! Anyway, he’s very happy with his fudge and astronaut.

I did a blog post this morning, then we went out for lunch at The Boathouse. I don’t think we’ve been there since Becky and James’ wedding. They have done it up, and I do not like the new artwork. Mirrors with bottles of alcohol sticking out of them, appearing to spray. Awful. And being sold for £295! Still, I had some tasty food: mac and cheese, and baked cod in a brie and chive cream sauce. All very delicious.

We had about an hour at home, then Mommy and I had to go to The Spire to see Anne Dancey about my arm. We went through all that has happened in the past year, she examined both arms, and basically, I’m going to have liposuction. I’ll get a quote tomorrow, then I will book a date to have it done. I will have two arms that are the same size!

Dolly is still unhappy and I think we are stuck. I have texted the adopter of Dot, because her daughter in law looked after Dolly at the cattery and I think she might be able to help.

The 13th of June.

There is not much of interest to say today. This morning was pretty quiet – I booked my trains to London and back for the stem cell APPG summer reception in July, and found myself panicking about getting the train home in time, despite me doing it last year and getting the same trains. I need to calm the fuck down.

After lunch, I went to the gym and actually had a good session without any terrifying breathing or terrible back pain! Amazing.

This evening, Sarah, who worked with Dolly at the cattery, came round to see her. We hoped she might be able to coax her out but unfortunately, she wasn’t having any of it. Stayed under the chair, hissing. We’ve got some rescue remedy to put in her water, and I’m going to talk to Shaki to see if she has any further ideas. Otherwise, we’re at a loss. 

The 19th of May.

For all my talk of not caring about the wedding, I watched the whole damn thing.

I think mainly out of FOMO. I maintain that I do not particularly care about any of the people involved, but I wanted to know what was going on, and to be able to be part of the conversation. I like seeing what everyone is wearing. I think Lady Kitty Spencer, Sofia Wellesley and Carey Mulligan looked the best. I want to know why everyone is so obsessed with Victoria Beckham smiling; let the woman have her face.

Weddings always make me a little bit sad because of course, I will never have one. I am not under any delusion that I will ever even have a significant other again, let alone a wedding. I will not walk down an aisle to someone looking back at me, thinking how lucky they are.

But enough of my pity party! Once it was over, I took myself off to the back room where I watched the final four episodes of Scandal and began my next crochet project, a big multi-coloured cardigan thing. Now I have completed season 7 and I am annoyed about one aspect of the finale but oh well, can’t change that.

Back to things I definitely don’t care about: the football.

The 20th of May.

This evening I am full. We had pork stuffed with black pudding for dinner and I feel immense. I don’t think I can move.

It’s been a pretty sedentary day anyway. I’ve been working on this giant cardigan, with an eye on Sunday Brunch, every so often popping my head in on the kittens (mainly sleeping under the chair). I persuaded Mommy to make pretzels, but they weren’t ready in time for lunch.

After not-pretzels, I was really tired because it took me hours to fall asleep last night, so I went upstairs to lie down and listen to Gardener’s Question Time. Might not quite be a nap, but it’s the next best thing. Then I came back downstairs and made myself a terrible iced coffee. I made it with two shots, so the milk I put in didn’t cool it down very much. I chucked in some ice and put it in the fridge, but it still didn’t get very cold, so I put in nearly an entire ice cube tray’s worth in and that finally made it refreshing.

I spent the rest of my afternoon watching The Hostile Hospital and The Carnivorous Carnival while making the collar of my cardigan. I got to the end, and realised I’d done it along the wrong side, so I pulled out all out and I’ve just started over again. Sigh!

 

The 30th of March.

Today has been rather productive, just not in the way I had planned.

This morning, I wrote up a blog post, then got back to work on the second jumper sleeve while watching the terrible Good Friday film offerings on the tv.

After lunch, I had planned on going to the gym. However, I got there and everything seemed suspiciously quiet, so I had a quick look on their website and yes, because it is a council-run facility, it is closed on Good Friday. C’est la vie.

So Mommy dropped me back off at home, and I returned to my crochet. I put on Scandal, and hammered my way through the whole first season (there are only seven episodes so it’s not hard). I finished the sleeve as I got to the end of the penultimate episode, then watched the last one while I got changed, because tonight we’re having family Easter dinner at Waters.

The 31st of March.

Well, my day has not entirely gone to plan, but hey, where’s the fun in that?

I wasn’t sure if I was meeting Selina (she was having a root canal this morning) or if I was going to the gym, so I stayed in my pyjamas all morning. I did a little bit of crochet while we watched the new neighbours move in because we’re creeps.

She texted me about noon and bless her, it had not gone well, so I put my gym clothes on. Had lunch, and I attempted my second gym trip of the Easter weekend.

When I got there, I sorted out my membership, because today was the last day of my free trial. Inside, I was displeased to see some youths, but that will be par for the course for the Easter holidays, I suppose. I did some work downstairs, fending off questions about how I was going to get upstairs from an instructor who hasn’t seen me before. When I got up there, I’d just started my first machine when I noticed everyone leaving. I took my headphones off, and I realised the fire alarm was going off. Evacuation time! Thankfully my chair was on the way out so I had something to sit in outside. I checked my watch and I’d burned 400 calories and that’s enough, so I got my ride home, back to my crochet.

 

 

The 24th of February.

I am so close to being finished. Or at least, finishing a stage. All I have done today is sit in front of that damn machine. I did at least get four sausage dog legs made and watch over half of Mindhunter at the same time.

All the photos are backed up and deleted from the phone and photos app. There are some left on the iPad that I cannot access no matter what I do and I think I am going to have to restore it to factory settings to get rid of them. Then there is the iCloud website. There are still 12,000 photos on there and to delete them, you have to click on each one individually. I am downloading a program to hopefully help me do it in a less time-consuming manner.

I still have to look at exactly what I want to put back on to my phone, but that is a task for another day. Tonight, I have to check what is important on the iPad, then restore it. I hate everything.

The 25th of February.

Ohh I am very annoyed. I seem to have lost the really great birthday card I got for Mommy. I was wrapping her presents this afternoon, was looking where I thought the card was but couldn’t find it anywhere. So that’s frustrating,

This morning I was back on the computer. Deleting stuff from iCloud and hunting for duplicates. I think I should probably just do one thing at a time because my duplicate program kept crashing which is not ideal. I am at least making progress with the iCloud website photos – got rid of over 1000. Only about 11,000 more to go.

We went out for Mommy’s birthday meal a day early, so picked up Grandma and went to Water’s at Resorts World for Sunday lunch. I decided not to have a starter because I wanted space for a pudding, but it ended up being a bit disappointing. My main course, chicken breast with crispy skin and sage and onion stuffing (so moist!) was beautiful, but my chocolate and orange mousse was nothing special. I should have gone for the sticky toffee pudding instead.

 

The 19th of January.

Kittens are gone! I am sad, but they’re going to a happy new home and the adopters have promised to send us photos of them in their new burger beds.

A much better night, no wind to wake me up. I spent the morning writing up a blog post, and sending a couple of Anthony Nolan emails. I also managed to spill my coffee in the kitten room and all over the table in the living room, staining it, because I am a dickhead.

After lunch, I started working on a crocheted bunny, and I filled in all the paperwork for the adoption this afternoon. They arrived quite promptly, having apparently been counting down the days. We got Autumn in the carrier first (although she escaped on our initial attempt), then we nearly got Ava but she wriggled out of Mommy’s hands. Amber did not get away, so we popped her in, and finally we lulled Ava into a false sense of security before giving her a big hug and putting her in the carrier with her sisters.

I am going to miss them, but they’ll be fine. We’ll get some new ones!

The 20th of January.

Birthday eve!

I didn’t have a great night; I kept waking up because I was cold, and I had a dream someone was trying to molest me. Not pleasant.

Amanda (Cats Protection treasurer and adopter of Harvey and Hugo) came round this morning to collect a bunch of cheques and adoption paperwork, and gave us an update on how they are. They have apparently become enormous. I do hate it when they grow up. Much prefer the tiny cats. Then I did some crocheting of the bunny I am making, so now it has a head, a body and part of an ear.

After lunch (which included a cinnamon swirl for the first time in ages because the boy who normally works in the M&S Bakery and can’t do them wasn’t there this week), Daddy and I went to see Three Billboards Outside Ebbing, Missouri. We would have seen in last weekend, but the timings were no good. Thankfully, it was still on and at a convenient time so today was our day. I had to spend the first half of the film breathing through my scarf because the man in front of us had some sort of strong cologne on which assaulted my throat, so I needed a filter if I was going to not cough constantly. It’s such a good film – I kept seeing tweets saying how great it was and Christine saw it ages ago so I’m glad we got the chance. I laughed, I cried. Frances McDormand is excellent. It probably won’t be in cinemas much longer but if you get the chance you should see it.

We got home at six, and had about fifteen minutes before we went back out to Nosh & Quaff for my birthday dinner. I had a mimosa (in the drinks menu they say you can have an orange bellini but if you order that, they get confused), then some mac’n’cheese bites to start. They were delicious, although the cheese inside was very hot so I cut them all open to let the steam escape. There was a bit of a wait for the main courses, and I had ordered the Double Dutch chicken waffle. However, I took one bite and realised I was in trouble. In the menu, they do not mention that the coating the chicken is covered in is spicy as fuck and my mouth could not tolerate it at all. So much pain. So when the waiter came over to ask if everything was okay I was like “I have a problem”. He was very nice about it and brought me another menu after taking away the offending meal. I thought the hot dog sounded okay and he said yes that had no spice and he was correct. Just a good hot dog in a soft bun and no pain to endure. In all, I would call it a success, and would go back, but would check exactly how each dish is seasoned before ordering.

Tomorrow I will be 27 and it feels like a big deal.