The 20th of July.

Really not very warm this evening and I am not on board. I do not like needing a cardigan. We even had rain this afternoon.

Second trip to hospital of the week, this time for endocrine clinic. Always pretty good at running to time, so I wasn’t kept waiting long. We ran through my current issues, mainly the back pain, and he’s going to give Dr. Blaney a nudge. Not that I think he’ll be able to offer me anything else but maybe he knows something about CBD oil that I don’t. Anyway, he wanted some bloods, so I went to see a woman who had two goes in my elbow and underside of my wrist, which were both unsuccessful. She went to get a colleague, who tried again in the elbow – he finally got some backflow, but then the blood moved through the tube at a glacial pace, then literally dripped into the bottle. It was so slow, it clotted in the bottle, despite him moving the needle around, my fingers going numb. He was ready to send me on my way to drink a lot, then return, but I offered up my foot. In for a penny, in for a pound. And it worked! Got enough blood, and I was able to leave.

This afternoon, I sat with Dolly. I watched Tau, which was not what I expected. I didn’t consider it to be much of a thriller, more a human interest story between a woman and a programme. Probably wouldn’t recommend. Then I watched the first episode of The Staircase. The husband definitely did it.

The 21st of July.

Back to London!

Today we were down for the Anniversary Games, so had to get a slightly earlier train than Wednesday. Our journey down was more interesting than usual, because in the lift down to the platform, who should be in it but Uncle (who is not really my uncle) Peter! He was going to see the penultimate performance of Brief Encounter, and said he would come and find us on the train. It was a good thing he didn’t get on with us, because when we reached our seats, we found it was full of people’s suitcases! Mommy loudly and politely shouted that people needed to move them, and the assistance guy said that if they weren’t moved, he’d just take them off the train! A man moved his one, then a couple had to remove the other five (they did have children with them). They tried to put them in the space opposite me but he wouldn’t let them do that either in case I needed to go to the toilet. I didn’t pipe up to let them know I can walk. They tried to reason that they were getting off at International and Coventry but I told them that was irrelevant. There was also a man in Mommy’s seat who was trying to refuse to move but he relented too. We may have slightly delayed the train. Once all the kerfuffle had died down, Peter came to find us, and he showed us all his pictures from his trip to China! He went because his friend designed a new Sleeping Beauty for the Chinese national ballet, plus his grandparents had lived there between the wars, so he wanted to see more of it. And so our journey down was lots of fun.

When we arrived, the assistance people were not very forthcoming, so Mommy got the wheelchair off and we made our way to St. Pancras. That was absolutely hideous, just rammed with holidaymakers and school trips and it was just ghastly to get through. Thankfully, at the back of the station, where the javelin train goes from was better. We got on the train to Margate and it was delightfully empty! So we whizzed off to Stratford, where we waited ages for a lift, then met Christine at our usual spot. We found our way to our seats, and settled in to eat our lunches before the athletics began. My sandwich was not very exciting, but then I had a doughnut which I had asked Christine to purchase on her way to us, a Love At First Bite from Doughnut Time, which is a Nutella filled doughnut coated in cinnamon sugar. It was so good and filling.

The first event was the 3000m speedwalking, in which the winner got a World Record! Not a bad start. Other highlights included seeing the GB women’s 4x400m relay team from the Beijing Olympics get their bronze medals because two of the teams above them hand since been disqualified for cheating, Shara Proctor winning the Long Jump, Zarnel Hughes coming second in the 100m, and Libby Clegg winning the T11 200m. Good work by all the people!

It finished at four, an hour earlier than Mommy had thought, so we didn’t rush to the station like everyone else. We went to John Lewis because their toilets are nicer than the ones in the stadium and we investigated their haberdashery for nice wool but there wasn’t anything incredibly different, had a bimble round Waitrose so Christine could do some shopping, and eventually decided it was time to make our way back to Euston.

St. Pancras was much quieter upon our return, and the journey home was far less entertaining than the morning’s. But that is preferable. I just plugged in my earphones and read The Intrusions on my phone, just aching for the moment I would get home and be able to sit on a soft chair. My butt hurt so much.

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 16th of July.

Early start for liver clinic. A very straightforward one – we got an excellent parking space, I had my blood pressure done, watched about ten minutes of tv, then I got called through. James wasn’t there today, so I saw a different lady. I don’t really have any concerns, and I answered all her questions in a satisfactory fashion, so I was in and out in no time. Had to have some bloods done, and remarkably, they got a vein the first time! I was very impressed.

This afternoon, I had to put my feet up against the wall again (I don’t know why this is so bad at the moment; maybe it’s the heat?) for an hour, then I had appointments at the dentist and hygienist. I do feel slightly smug after going because my gum score is always zero and they congratulate me on my brushing and flossing technique. Gotta have that good oral hygiene.

I got the information of the potential adopter of Dolly. However, I tried both the phone numbers provided, and one was out of service, and the other went through to a man who didn’t know what I was talking about. Not promising! I have emailed the woman, and we’ll see if she gets back to me.

The 17th of July.

Ugh, bureaucracy. I spent my morning ringing various phone numbers of government agencies, trying to sort out the renewal of my blue badge. I sent off the application yesterday when I got the reminder, but I knew they’d request extra documents because the website format doesn’t allow you to send enough. However, they want a letter that does exist – one dated in the last year that days how many points I get for PIP. I don’t have that because I haven’t been reassessed in that time as I’m entitled to it indefinitely.

First, I spoke to the Blue Badge people, who just won’t accept any other letters no matter how well I argued my case. So I had to ring the DWP to get an up to date proof of eligibility letter, and there are SO MANY PHONE NUMBERS. The number the Blue Badge people put in the email is wrong, the one on the last letter from the DWP is wrong, then I think I tried two more numbers and sat on hold for ten minutes before I spoke to someone. Thankfully, they were helpful, and my letter should be with me in 3-5 working days!

This afternoon, Daddy and I sent to see The Incredibles 2. That was good fun. I thought the twist was pretty obvious, but that didn’t dampen my enjoyment. The scene with Jack-Jack and the raccoon is very good, and Edna Mold is still the best. I highly recommend it.

Happily, the lady I emailed last night got back to me with a correct phone number, so I’m going to call her this evening.

The 14th of July.

Well, this morning was ghastly, but the afternoon was a joy.

We drove down to Ashford so I could visit Robyn, Stuart, Herbie and Ned, while Mommy and Daddy found a way to entertain themselves. The morning was so terrible because despite setting off before we even planned to, we arrived an hour and a half late. There was an accident on the M25, then the sat nav lady took us off to god knows where and we ended up going into and out of London. By the time we got there, I had gone through the full gamut of emotions. Importantly, the murderous rage had passed.

I love them. I got to distribute all my crocheted gifts, and they are going to try their best to stop the blanket from getting dribbled on. It actually goes very well with some of their furniture. I got to squidge Ned, and Herbie gave me some hugs when he wasn’t being a puppy or hiding in the cat house. We had lunch, then settled down to watch Despicable Me 3 (Herbie’s choice) which gave us a chance to talk because Herbie was transfixed. I asked the questions I had prepared for the podcast recording that got scuppered, so look out for that quality content on The Naughty Step.

I was forced to leave about half six, but next time they are going to come up to Birmingham instead. And it won’t be another two years!

The 15th of July.

Too warm to do much of anything today. It was just nice to be able to take the sleeve off last night, although because of the lack of sensation, it feels weirdly tickly whenever the sheet touches it. So I spent my morning writing about yesterday, not watching Sunday Brunch because Pixie Lott is, quite frankly, unbearable.

After lunch, I went upstairs to stick my feet up against the wall again (my feet got puffy during all of the driving yesterday) for a bit before the tennis started. Firmly on the side of Djokovic today – if I can’t have a storybook ending for Serena, I want it for him. Anderson has a weird dog that I don’t like.

While I watched, I typed up a late blog post, then Shaki arrived during the second set to pick up some of the donations from the cattery that we’ve been playing host to. Inevitably, she ended up staying for about an hour, seeing if Dolly might emerge but she refused. She did say that apparently there is someone who has registered interest in her so I’ll talk to them and hope to sweet baby Jesus that they are reasonable.

Djokovic won, then I found myself watching the World Cup final. Here, I wanted France to win, because when Croatia beat us they behaved like bastards. Very pleased, and now I will return to my usual state if feeling ambivalent about the majority of sport.

 

The 12th of July.

Well, the news is depressing. It is all about Trump’s visit and I would rather avoid. Bleugh.

This morning, I did a blog post, then I was at the chiro. Had to be selective about what Trine could do because I am still a bit delicate. My neck was the main problem anyway; I think it did not get on with the holiday bed.

When we got back, we changed my sleeve and took the opportunity to wash my hair. My whole arm is turning a lovely shade of yellowy-green.

After lunch, I sat with Dolly all afternoon watching NowTV. Well, I watched, she ignored me and stayed under the chair. I watched the first episode of Sharp Objects, and why Amy Adams has not won an Oscar yet is beyond me. And the girl they have cast to play her younger self is spot on. I also saw the pilot of Twin Peaks because it seemed like something I would enjoy and I thought it was of a similar kind of vibe. I am heavily into Lara Flynn Boyle’s hair. Not so much the fashion.

Got to take the dressings off tomorrow. That’s going to be a pretty picture.

The 13th of July.

Last night was the first time that the sleeve has really bothered me since I got home. I kind of had to just keep squeezing it until it stopped itching. I had all the dressings taken off today in follow up clinic, just so the wounds could all be checked and cleaned. They all look good, not really even much to clean. I have to start using this ointment three times a day which doesn’t really get absorbed by the skin, so when the sleeve goes back on, it soaks through a little which is not a desirable look.

This afternoon, I caught up with the most recent Agents of S.H.I.E.L.D (Talbot gone totally Trump), then I went to sit with Dolly and watch some more of Twin Peaks. She remained under the chair, which I think was a smart move because it is the most batshit thing I have ever seen. The scene with the dancing dwarf was really quite insane. Plus I keep having to go to imdb to work out where I know people from, like Laura Palmer is Ellie from One Tree Hill, and Shelley is Alice Cooper from Riverdale. I’m such a millenial.

The 10th of July.

Oooh I am very itchy. Apparently it is one of the many weird sensations one can get after liposuction so I took an antihistamine to try to counter it but it wasn’t really helpful.

I was able to take the sleeve off for a couple of hours this morning, which was very nice. The elbow and wrist have been squeezed particularly hard. Plus my hand is holding a lot of the fluid still; I still ask Fiona about that on Friday if it’s still there.

I spent my afternoon watching the tennis, crocheting and periodically visiting Dolly to see if she could be persuaded to eat anything, because she hasn’t since yesterday evening. I would go in, she’d ignore the food, but then she’d cry when I left. She has just eaten a small amount of fish, but then wandered off to look out of the window and howl. I do not understand this bloody cat.

The 11th of July.

The itchiness has calmed down today, thankfully. Instead, the issue of the day has been hand swelling – the garment forces some of the fluid into my hand, and it felt enormous this morning. I tried putting the compression glove on, but that just seemed to cut off the circulation to my fingers. Not ideal. Eventually I took the sleeve off for an hour this afternoon, just to give it a rest. My fingers are not shiny like they were earlier so it’s helped a bit.

My day has been remarkably uninteresting. I actually spent pretty much my whole afternoon lying on my bed with my feet up against the wall, trying to get some of the fluid that appears to have pooled in my feet to drain. I think I may have even fallen asleep. But after a few hours, it was too much pressure on my back so I came back downstairs. Sat with Dolly for a little bit because she is back to her habit of crying all the time. She does it whether we’re there or not, but I feel bad if I ignore her. Stupid weird kitty.

The 8th of July.

So, so tired.

I didn’t fall asleep until about 3 this morning because my arm hurt and I couldn’t get in a comfortable position and the sheets were a mess. Then I was woken up at 7 for my breakfast of toast, marmalade and coffee. I asked the nurses for my Tramadol, because the codeine did fuck all, and found that helped enough for me to be able to bend my arm, brush my teeth and sort out my bed a bit.

Anne had said I could go without seeing her, but I wanted to see what she thought of my arm today and find out what we were to do regarding dressings. She appeared at quarter to twelve, with Mommy and the nurse, which was excellent timing. She took off the bandages, peeled the sleeve down, then removed all the Mepores, trying not to tear my skin. It looks pretty amazing! It looks best immediately post-surgery, then the swelling will go up, but both arms looked nearly identical! And all the compression has alleviated some of the bruising. The nurse gave all the wounds that needed it a clean, then applied new dressings before putting a new sleeve on. So everything is good! I see Fiona the nurse next week, Julie in six weeks, and Anne in September. Then we just had to wait for pharmacy to send up my TTOs and it doesn’t seem to matter if it’s an NHS or a private hospital, they still move at a glacial pace.

I almost match. I’m so happy.

The 9th of July.

Sleep was good. I lay on top of the sheet with my arm on a pillow and managed to stay there until a reasonable time. The arm was less painful, so I think that helped.

I have done very little today. This morning, we watched Christine mace-bear at a graduation ceremony over live stream, then we caught up on the Taskmaster finale that we missed while we were away.

Sarah came back with Dolly, who despite having a lovely time at the cattery, scratched Sarah and wet herself when it came to having to get in the carrier. Poor thing. She has gone straight under the chair.

We had lunch, then I sat with Dolly all afternoon, crocheting and watching Zootropolis. She has not emerged, just like Boris. Suddenly my trip to the Houses of Parliament on the 18th has become even more interesting.