Archives For July 2017

The 28th of July. 

I actually had a thing today – endocrine clinic, but I’d forgotten to put it in my diary. Thankfully, Mommy had it in hers, so we didn’t miss it. 

Andy Toogood usually runs pretty well to time, and today was no exception, so I got very little of my book read. He called me in shortly after half eleven, and I updated him on my current state. There’s nothing he can do about any of it but he needs to know these things. He did want some bloods to check my thyroid function, so I did that, then we had a quick trip into town. I needed to stock up on facewipes, and Mommy wanted to get her glasses tightened up a bit. We went our separate ways, and I searched all the aisles of Superdrug, but it think they’ve stopped stocking the range I use. Curses. So I bought some other ones and some toothpaste, and had a very entertaining time in the queue – a child in front was being a dick, doing fake crying because he couldn’t have some mint imperials. Then, when I had to pay, he was blocking my way, and refused to move. The woman with him (grandmother?) couldn’t get him to move until she physically moved him, and she apologised to me a lot. As I left, I heard her say “That’s it, I’m not taking you to McDonald’s now.” Bwahahaha. 

This afternoon, I have been assembling the minion. I got the arms and legs on, but when it came to attaching the eye, it was too big, so I’ve had to make it again with a smaller hook and it looks a lot more promising. 

The 29th of July. 

Finished the minion and season 2 of Zoo. What a productive person I am. 

Started my day with a phone call from Black Sheep to rearrange my hair cut appointment because Danyl has left! Don’t know why, he’s just gone. So June is going to cut it instead. Mysterious. Then I finished the minion’s face and took some photos to send to Robyn and Stu, who were greatly appreciative. Then I wrote up the blog post I forgot to do yesterday, and sorted out what I need for the panda. 

Lunch (pretzel and cinnamon swirl, thank you M&S), then this afternoon has been spent on the last three episodes of Zoo (had a tiny cry) and began work on the panda. He does not contain an immense amount of black and is less tricky than the minion so won’t be as hard as I thought.

I have also been trying to find a Pandora charm that is appropriate for tomorrow. I found a toy soldier, because I am a brave soldier? These links are getting very tenuous now but there is not much I haven’t thought of in ten years. 

The 26th of July. 

Industrious day. 

I had a rather confusing start to the day, because first my brain thought it was Sunday, then that it was half past ten, neither of which were true. After registering what day and time it actually was, I got up and dressed for a day which appeared like it was going to be chilly, when actually this afternoon it’s got quite warm. I don’t know what’s going on, frankly. 

I did a blog post, then got the minion out, which I’ve been working on most of the day. I have now finished the dungarees and all the embroidery on them. Now I have several small details to make – limbs, eye, etcetera. I have nothing to do but work on him so I don’t think it’ll take long before he is finished. Then panda, thing for Michaela’s daughter, things for Pete and Sophie’s twins. Going to be a busy woman. 

The 27th of July. 

I can tell I’ve been busy because my phone battery is still up at 80% and I haven’t had it on charge at all. So much crochet. 

That is literally all I have done today. Sat down in the living room this morning, got the wool out and haven’t really moved since. I have actually finished all of the pieces of the minion – today I made all the fingers, thumbs, arms, feet, legs, eye, lens and strap. Next job is to attach them all to the body, then he will be whole! I’m not sure I will make another one – the fingers were quite tricky, especially because they were in black and that is really hard to see the loops in. Next thing I have to make is the panda – more black, hooray!

I have tried the pregablin again and today it has not made me too sleepy or breathless. Hopefully tomorrow is the same. It’s not worked on the pain at all, but if I can cope with the drug, then I can up the dose and see if it works. 

The 24th of July.

Feel much better today. Bloody rosé. I will stick with the Pinot Grigio from now on. 

It’s been a very quiet day. It will be rather a quiet week, as it stands, because my diary has nothing in it at all. 

I woke up from a dream in which I was Cerys Matthews from Catatonia and I was rehearsing with Tom Jones. As you do. I spent the morning writing up the weekend, and registering the adopted kittens’ microchips now I finally know what they’re all going to be called. 

After lunch, had a hairwash (would’ve done it yesterday but other things got in the way) and realised I need a trim. Michaela’s baby has just arrived, so she won’t be able to do it, so I’ll have to see if Danyl can fit me in. Sides and front getting a bit long. Then I went to see the kitties, although they were really only interested in sleeping this afternoon, so I watched some more Orphan Black instead. I suspect over the coming week, I’ll get up to date. 

I spoke to the lymphoedema clinic who have not had my referral. I then spoke up Philippa, and it turns out James hasn’t sent it yet, so she’s going to badger him for me. Sigh. 

The 25th of July. 

Well I’m fully up to date with Orphan Black, so I’ll have to find a new way to fill my time. Perhaps I will actually read some of the books I have been recently buying. 

This morning, I got busy on the crochet, and by lunchtime I had made the dungarees of the minion. Well, most of them – they need a back. Still, it is progressing. I had to make my own lunch and even just making a sandwich, I was reminded how awful my back is. It is agony to stand, to support my own weight. I need to give the pregablin another go before I can say to the doctors that it doesn’t work/the side effects are intolerable. 

This afternoon, I sat with the floofs and watched Orphan Black. Bree was chasing flies again, so I didn’t get to do much petting. Still no interest in either of them and I can’t understand why! Both so lovely, who doesn’t want a pretty cat?

The 22nd of July. 

Writing this on Sunday morning because I was not exactly in a fit state last night. 

This morning, after breakfast and coffee, I had a lot of typing to do – two long blog posts done. When I have to write very long ones, I use the laptop, but it’s not good for my wrists. My body is so broken. 

I had some lunch, then got myself ready to go to Becky’s for her birthday barbecue. When I arrived, I was presented with a glass of rosé and took a spot in the garden, under the gazebo. It wasn’t super warm, but it was at least not raining. All of the usual gang were there – Chris, Alison, Jamie, Lorna (and her boyfriend Will), Micky and Stuart, Michael and Barbara. Other people were going to come and go as the day went on. 

We managed to soldier through the first shower, but after about 5 o’clock, it was getting a bit chilly and we decamped into the living room. I sat next to Luna, one of the cats, so I always had someone to talk to. We played Cards Against Humanity, which I have not done before, but I won three black cards so I was pleased with myself. 

By the time I had started my third wine, it had got to about half past nine, and I was quite sozzled. Decided it was time to go home – I needed carbs and water, and if I’d stayed, I would have continued to drink and things could have ended rather messily. 

The 23rd of July. 

Hmm well rosé does not agree with me. The last time I had it was at Jill’s when I also had Four Loko and some kind of apple shots so the hangover could have been attributed to any of those. Today I haven’t been hungover, but I’ve had really unpleasant heartburn since last night. Had some Rennies today but it still isn’t 100% gone. Ugh. 

I had a nice morning watching ol’ Nish on Sunday Brunch, writing about yesterday and trying to ignore Rita Ora. I don’t know why, I just find her incredibly irksome. Grandma didn’t go to church, so she came to us for lunch, which we actually had at lunchtime, not mid-afternoon. 

Afterwards, I went upstairs for an hour or so to have a lie down and stretch of my stomach, give it a bit of a rest, while I listened to some podcasts. I came back down to say bye to Christine, and crocheted some more of the minion while the cricket was on. Then I went to see the floofs, and watched one episode of Orphan Black. I’ve got two episodes left of season 4, then I’ll actually be on the current series. 

Grandma has gone home, and I’m starting to think about some tea. More carbs, I think. 

The 20th of July.

Second trip to London this week! So much wheelchair – my bum is not going to thank me. Left much earlier today, as the train was at half ten, so we could have lunch in Covent Garden before the show. We went to Timberyard because it’s my favourite, despite them not doing crodoughs anymore. I had a ham and cheese croissant, a chocolate chip brownie pie and a flat white, after which I was very full and had to undo the top button of my jeans.

We had to pick up the tickets from the Donmar at two, then we waited for Christine to arrive inside the foyer. The rest of the audience seemed to be elderly people, but then again, what can one expect for a Thursday matinee? Anyway, once she appeared, we went to find our seats and settled in for Committee (or The Public Administration and Constitutional Affairs Committee takes oral evidence on Whitehall’s relationship with Kids Company). We went because Naomi was involved in the development, and we were intrigued to see how it had turned out. It was a musical developed from the transcripts of the session in which Camila Batmanghelidjh and Alan Yentob were interviewed, plus testimonies submitted for evidence. Considering the material, it is interesting and entertaining. The set is very smart, and the performances of the singers are really remarkable. I’m not sure I entirely grasped the point, but I enjoyed it.

After the show, we went for a drink, then dinner at Hawksmoor. I didn’t really have much room in my belly, so I decided to go for some lemon chicken with Béarnaise sauce and buttered greens, while Mommy and Christine had steak/a burger, then panna cotta. I just wanted a lie down.

We paid the bill, then we had about an hour before we had to be at Euston, so we decided to walk/drive back. The weather was nice, so why not?

The 21st of July. 

Everything hurts. My butt hurts, my legs hurt, my back hurts, my neck hurts. Sitting in the wheelchair for two out of three days is very bad for my body. 

I gave myself a lie-in this morning because I was awake until two, burping. I don’t know why – another mystery of my fucked digestive system. So there wasn’t a huge amount of morning left after breakfast and coffee, and I spent what remained watching BBC Newsroom and writing about yesterday. Tomorrow I will write two very long blog posts. 

After lunch, I started crocheting the minion I am making for Herbie, while I watched Orphan Black. Three episodes done and most of his yellow body. I have much crocheting to do, so I will have to have some industrious days. 

The 18th of July.

London in the summer is my favourite. I was down today for the summer reception of the APPG for stem cell transplants at the Houses of Parliament.

I got to New Street about lunchtime, bought myself some food and coffee, and went to sit in the assistance office. They got me on the train nice and swiftly, and I settled down listening to some empowering tunes to get me pumped for talking to MPs. At Euston, of course, they were late to pick me up. They might have been just within the 5 minutes but I was bored and had to pee so got the chair off myself. Had an awkward moment at the disabled toilet where the man with the key tried to stop a woman and her daughter going in only to be told that the daughter was blind. Ergh.

I went to get another coffee, and although it was early, I thought I might as well just get my cab to Westminster, just in case there were delays because of security or whatever. I had a very perky taxi driver, who I educated about stem cells, and he ended up dropping me off quite a way up Whitehall, because otherwise we would have sat in very slow traffic while the meter ran up. So I beetled down the road in my chair, trying to avoid people and not get blinded by the bright sun. When I arrived at the visitor entrance, there were only a couple of people ahead of me, and they just x-rayed my bag and patted me down. No weapons here. I carried on through to the main entrance hall, and it was only quarter past three. The reception didn’t start until 4. Oh well. I texted Cassie from Anthony Nolan to let her know I was there, and proceeded to twiddle my thumbs. I didn’t have to do it for long, as I soon saw Henny and Richard from AN arrive, so then I had people to talk to, and they found someone who could take me to the terrace pavilion an accessible way.

When I got there, I saw Cassie and Simon, and met some other members of the team who I’ve heard of or talked to but not met in person before. They were still setting up, so I just watched and talked people as they arrived. As it got to 4, people began to trickle in, and before we knew it, it was really rather busy. I actually didn’t end up speaking to any MPs, except Mark Tami, the chair of the group, as it happened. I talked to several people from Anthony Nolan, and other patients or supporters. Emma, one of the other young ambassadors, was there, so we talked about what’s been going on with both of us and had our photos taken, then I spoke to a girl with an interesting connection to me and obviously an incredible memory – she met me when I was in YPU with Alice and Vicky back in 2010/11 (I think that’s when it must have been), as she was a friend of Alice’s. She was there today with another of her friends who’d had ALL, so we had a good conversation about relapses and getting leukaemia tumours. Then the last people I really talked to were a girl called Amy and her friend – Amy set up the change.org petition to reverse the decision to not fund second transplants when her friend Sasha had to fundraise to pay for hers. Only after she started paying did the decision change.

Before I knew it, it was 6 o’clock and time for us to go. Cassie found a man to take me back out, and once I’d escaped the labyrinth, it was time to find a cab. Last year, nobody was willing to come to Whitehall, so I decided to drive up the road for a bit until I could find somewhere suitable to get picked up. I ended up getting all the way to Shaftesbury Avenue, and eventually stopped at The Palace theatre. I was bound to get a taxi round there, so I used the mytaxi app and a chap came to pick me up. It didn’t take us long to get to Euston, so when I arrived, I had about an hour before I had to go to assistance. I bought a sandwich and a drink from M&S, a couple of magazines for the train, then in WHSmith’s they were doing buy one get one half price on some books. There were two that I wanted anyway. I am awful.

The 19th of July. 

Tired. Took me hours to fall asleep, and I’m a bit floopy today. Got up at half nine, and most of my morning was spent writing about yesterday. It will be a long entry – always is when I go on a trip, so probably another tomorrow. 

This afternoon, we caught up on The Handmaid’s Tale from Sunday, then two episodes of Criminal Minds: Beyond Borders. Then I went through to the kitties, as I didn’t really see them at all yesterday. I watched two episodes of Orphan Black, and they slept on opposing windowsills. I got Bree to purr again! She likes what Betty likes – having her chin scratched. I will make her friendly. Or at least not terrified of people. Christine is coming back with us tomorrow, so she’ll meet her and that will be a good test. Hopefully she doesn’t run away. 

The 16th of July. 

I’m not feeling quite so terrible today. I slept until half past nine which is a lie-in to me, and spent my morning enjoying Joe on Sunday Brunch and writing up a blog post. Back on schedule for at least one entry. 

After lunch, I had a hairwash, then tried on a bunch of clothes. I cannot find something in my wardrobe that goes with the shirt I got – if I put it with a skirt, I look like a teacher (and not in a good way), and the only item that it worked with was some pink shorts. If I were going to be able to stand up while I talk to people on Tuesday that would be fine, but I can’t do that and breathe. However, when I sit down in the shorts, they become really too short to be appropriate. So tomorrow after liver clinic, shopping we will go. 

I have been to pet the kitties, and I made Bree purr! The only times she has purred have been when she is feeding from Betty, but this afternoon, Betty was not near her, and I stroked her into submission. I am the best at cats. 

The 17th of July. 

Last early start for a few days. This morning we had to leave the house at 8 to get to liver clinic at 9. Got there only just in time, but still before the doctors! Still, James didn’t exactly have chance to start running late, and there was only one chap ahead of me. We had a chat about my recent stays in, and he was delighted to say that while I was incapable of breathing, my liver coped extremely well! Good work, liver. He was also happy to do my referral to the lymphoedema clinic, and he is good at doing things, so hopefully they contact me relatively soon. 

When we were finished, we went to town to find some trousers to go with my shirt for tomorrow. Incredibly, the first pair I tried on were right! I tried on a few more, just to make sure, but they weren’t as good, so we were done pretty quickly and were home by lunchtime!

This afternoon, I watched two episodes of Nashville, only crying in one, then I went to sit with the kitties and watch Orphan Black. There was a fly in the room which they found greatly interesting, so much so that Bree chased it into the window. Stupid kitty.