Archives For cinema

The 30th of March. 

Fairly acceptable breathing today. I’m on 0.5 litres of oxygen. Normal air is not quite oxygenated enough for me. 

I at least had a better sleep, and this morning I got a blog post done and not much else. I had another appointment (which I had entirely forgotten about) at the Women’s at half past one, so we ate our lunches and got on our way. Thankfully no hellish traffic jams today, but there was nowhere to park so Mommy pulled over, I drove off in my chair with the oxygen on the back and she found somewhere to put the car. 

I was seeing Miss Byrom for a follow-up after the procedure I had in November, and Sue, the sexual health nurse, was there too. I said that I thought it had been successful, but only up to a point. She examined me, using a very small speculum and a very long swab, and it turns out part of me has sealed up again. JOY. It’s to do with a thing I have called lichen planus and it’s just another stupid thing that I have that has no cause. I have to carry on with the dilators, and she’s going to talk to a plastic surgeon about me to see if he has any ideas. 

Too many things wrong with me right now. I feel like a collection of conditions rather than a human woman. 

The 31st of March. 

Today was the most normal I have felt in a while. My sats were good enough for me to not need extra oxygen for most of the day. I’m on it now, but still, it’s been a good day. 

This morning, I didn’t fancy watching Eamonn and Ruth be unbearable, so I caught up on The Magicians and did some mindless crocheting. After this project, I really need to make something for nurse Jenny’s baby and for James. I also had issues with Vue and their stupid website trying to book tickets for Ghost in the Shell. 

It’s an odd sort of film. I kind of get the premise and I found it interesting, but I didn’t really see the point. Having done some research, I think it’s too large a story and world to cram into a 100 minute film. One thing I did like was the choice Scarlett Johansson made to lead her walk with her head. It was curious because the company in the film go to so much effort to make Major appear human, but her walk was so unwomanly. Hm. 

Tonight I am going out to The Glee to see Fin Taylor and Mat Ewins, but there is no way I am climbing the stairs, so I’m going in the chair and have arranged for someone to let me up in the lift. Then tomorrow I will feel terrible, I suspect. 

The 18th of March. 

I have an oxygen-induced headache because I’ve had to use it much more today. I don’t know why, it’s not like I slept badly or took any lorazepam, just the breathing has been worse today. I could tell when I was getting dressed that I was struggling, and I’ve had to have it on for most of the day, even when Daddy and I went to see Beauty and the Beast. 

It was the first time I have been in a public place that is not a hospital while wearing specs. It was a moment I have been dreading – being in a wheelchair and wearing oxygen is, in my mind, the image of a visibly sick person and I never saw myself as that. Even when my breathing has been bad, I’ve never been able to cope with the idea of myself going out with oxygen. I suppose it is the immediate sense of pity it inspires that I can’t bear. In my wheelchair it is not quite so bad, I am able to retain some sense of independence, but needing extra oxygen just to exist, people’s first thought is “Oh that poor young woman.” I couldn’t look anyone in the eye. 

The film is magical. I didn’t know if they could match Be Our Guest from 1991 but they did and more, and I was delighted to see the line “I use antlers in all of my decorating” get the prominence it deserves. I nearly cried several times, for more reasons than I care to put down, but for as long as I could forget myself, I had fun. 

The 19th of March. 

My eyes hurt and I am tired. I don’t understand why they’re sore – they’ve been getting much better since I started the steroid eye drops but today they are not good. Blah. I think I’m knackered just from being poorly. Stupid pneumonia, this is going to take weeks to get better. At least I have not needed the extra oxygen today (except to go upstairs/eat a main meal). 

This morning, I watched Sunday Brunch and finished off another doily. Actually, I finished it just after lunch, and with impeccable timing, that was when Becky and Alison rang the doorbell. They went to the knitting and stitching show at the NEC yesterday and had bought us presents! Mommy has a very cute set off Christmas decorations to make (there will be no room left on our tree this year for any decorations that were shop-bought) and I have Lauren the angora bunny from Toft to make! It will be a welcome change from table decorations. 

When they left, I went upstairs to try to nap, or at least lie down and rest. I put on Gardeners Question Time and closed my eyes for 90 minutes (I listened to a podcast too) but I didn’t do any sleeping. I don’t know if it helped, but I didn’t have the energy to do anything else. 

The 20th of February. 

I so want to be able to breathe normally again. Or at least, normally for me. To walk from the living room to the kitchen without needing to recover, to not need to spend the first hour of every day coughing up endless amounts of crap. I suspect Andrew won’t be able to get me in next week because he’ll be only just back from half term, so I have to be patient. I am just so tired. 

I spoke to the orthotics team this morning and I’m going in tomorrow at 9.30, presumably to be measured for a sleeve that goes over the hand. 

The rest of the day, I have been waiting around for Mommy to be available so we could bake brownies with the triple double chocolate Oreos in. At one point, we almost got started, then there was decorating chat, then Alison came over, so an hour after going to the kitchen, we began. I made sure we cooked them for the full amount of time, so hopefully they won’t be underbaked like usual. 

Good news! NHS England have announced they “are confident” that funding for second transplants will become available, but this is not yet confirmed. It also begs the question of what the hell has the anguish of the past six months been for? The pressure is not off. 

The 21st of February. 

I think the steroid eye drops are working – I had to wake up at quarter to seven, and it took much less time for my eyes to adjust to the light. Hooray!

Up early to see the orthotics team – Chris is on annual leave this week so I saw Pete, the clinical lead. I explained what had happened and showed him the pictures. He took some more measurements (and was pleased I had worn a jumper with easy arm access), and with any luck, I’ll be able to pick up the new sleeve tomorrow after haematology clinic. 

Before going home, we went into town so I could return the jumper I bought the other day, and I got a birthday card for Mommy. Her present is on its way, so if it arrives in time, I’ll wrap it on Thursday while the dining room is being painted and the fumes will force me to retreat to upstairs  

This afternoon, Daddy and I went to see Hidden Figures. It is really superb. I adored all of the costume, especially Janelle Monáe’s dress at the beginning. Loooove. I read an article about the three women (Katherine G. Johnson, Dorothy Vaughan and Mary Jackson) in New Scientist a few weeks ago, and have been really looking forward to seeing it since then. I can’t believe I did not hear about these women until now. And I am worried that we are going back to the time they came from.

 

The 2nd of February. 

It’s been a very busy day. As soon as we arrived at the QE, we bumped into John Higham from the dental hospital (there with a family member, not ill himself), and then Janet, who adopted Monica from us ages ago. She’s doing really well, climbing up onto their garage roof, yet when she was with us, she couldn’t even jump onto the windowsill. 

Andrew saw me super promptly, which was excellent. He showed me the pictures from the venogram, and it’s quite obvious that what he did should have worked. He doesn’t want to go back in immediately, which is understandable, and having looked at my arm, our first port of call is going to be a compression garment which he is trying to get organised as an emergency (it normally takes two weeks to get an appointment). I have to keep it elevated, and squeeze a stress ball a lot to encourage blood flow, and see him again in a couple of weeks, when we’ll talk about next steps if necessary. 

We were meeting Naomi for lunch, and there wasn’t time to go home and back again, so we went into town. I bought a new jumper with large sleeves to add to my current rotation and spent the book token I got for my birthday on Negroland by Margo Jefferson. 

We got to Strada first, and it was full of elderly people obviously going to something at Symphony Hall. When Naomi arrived, I gave her the bunny I made, and she was delighted. She was very interested to hear about my most recent Anthony Nolan trip and to talk about the charity – she’s learning more about how they work because she’s choreographing the new show being created about Kids Company that’ll be on at the Donmar in the Spring. Must go see it, it sounds like it’s going to be fascinating. 

I had pizza and a chocolate fondant, neither really worthy of photos but very tasty. She had to go at half two because she was seeing Love at the REP, and we came home where I have done very little except squeezed a stress ball. 

The 3rd of February.

Bleah, my cough is extra rubbish today. I can feel the gristle in my lower ribcage as the bones grind together. It’s really not very pleasant. 

This morning, I did the blog post I should have done yesterday, and I started taking some diuretics. We thought it was worth a try to get some of this fluid shifted, so today has also involved more peeing than is normal. Maybe they, along with the stress ball squeezing and arm elevation, will help the fluid. Heard nothing about the compression garment.

After lunch, Daddy and I went to see Sing. It was that or Hacksaw Ridge, and I thought I needed the light relief of singing animals. I was not prepared for the ten or so children who were there – at a two o’ clock screening on a weekday, there should not be loads of kids, no matter what the film. If they’re ill, they should be at home, if not, they should be at school. I had to shush them several times because their parents were not doing anything. 

Apart from the children, I did enjoy the film. Rosita is my favourite – I love her and her piggy power.

The 13th of January. 

Not so much crocheting today. Less time. After breakfast, I did a blog post, then I spent the rest of my morning assembling the monkey. One down, one to go!

Had lunch, then shortly after, Daddy and I went to see La La Land. Not the only ones in today, unfortunately, but the few chatty youths that were there did stop talking when the film started. 

I loved it, as expected. I have downloaded the soundtrack already. I shan’t express any opinions about what happens because I don’t want to spoil it for anyone. There is a scene which pretty much broke my heart because it reminded me so much of dates I went on as a teenager and I don’t think I’ll ever have that experience again. Bah. 

More news tonight about the crisis in the NHS. How the government can keep saying it’s okay is unfathomable. Saying that they’re giving the NHS more money, but it’s not as much as they say, and they refuse to put anything into social care so it doesn’t work. They say it’s better than last year’s winter but the truth is that the really cold winter hasn’t even come yet. I’m waiting for this venogram and have been told it’ll be in the next ten days or so, but I’m hoping with every fibre of my being that it’s not the 21st or 26th. However, if they do want to do it then, I really don’t know how I could ask for it to be changed. 

The 14th of January. 

Crocheting all done. Need another project. 

This morning, while watching Saturday Kitchen, I did the other arm and the tail of the bear, then assembled him. He currently is being straitjacketed by some elastic bands to hold his arms in or he will look a bit flail-y, but I’ll remove those before Monday morning. Also his eyes are liable to disappear into his head so I might need to warn James about that. Still very cute though. 

This afternoon has just been me and Netflix. I finished The OA – it’s great and I got very emotional at the end but I’m annoyed because it was ambiguous. I really hate ambiguity – I like everything to be wrapped up in neat packages. Not sure if a second season would be right though. 

The other thing I watched was the first episode of A Series of Unfortunate Events. It’s really good – they have kind of taken elements of the audiobooks and the film and made it their own (I hate that phrase). I wish they’d asked Stephin Merritt to do the title music, but that is my only criticism. Also I am intrigued by what they did at the end (no spoilers). 

The 5th of January. 

I had a really good sleep, although some weirdly complicated dreams. One involved Victoria Beckham being a dog with glorious pink hair. As you do. 

Decided to ring the dental hospital again because the ulcer on top of my tongue is making it difficult to eat stuff. Chewing is hard. Unfortunately, the usual receptionist (the very obliging David) wasn’t there and the guy today didn’t understand that I am special and they always squeeze me in. Then it turned out Mrs. Richards wasn’t even there, but John Higham was in this afternoon and he could fit me in because he is an angel. 

I did a blog post, then continued with the crocheting of the blanket. I also went to say hi to the kittens after they all mewed at me while I was in the bathroom, and I ended up getting damp jeans because I sat on a bit of blanket that they like to knead and suck on simultaneously (I know, it’s disgusting, but they think it’s like their mum). 

After lunch, we went up to the dental hospital and saw John, who looked at my tongue, and didn’t really want to give me another injection because it is just uncontrolled steroid into the bloodstream, once it leaves the tongue, so instead he’s prescribed this steroid paste stuff that I have to put on. I’ve been warned that it is gritty and gross but I’m sure I’ll cope. It can’t be worse than the sensation of vomiting up chunks of your own dead stomach tissue into your mouth. 

The 6th of January. 

My arm is stupidly, uncomfortably big. I can only just get a jacket on now. I really hope this venogram happens PDQ because I want to be able to wear clothes other than huge jumpers. 

This morning, I went out with Shaki to meet a new fosterer. We spent about an hour and a half there with her, her husband, occasional cat-sitter (who will also be a registered fosterer) and current cats. One was not at all interested in investigating us, but the other one was in my jacket, scarf, bag and Shaki’s skirt. She was wanting much petting. 

Once we’d gone through all the relevant information, we then made trips to Lee’s, Lydon’s and Pets at Home in search of the gastro food to tide our kittens over until they go on Sunday. 

This afternoon, Daddy and I went to see Rogue One (finally). We were the only ones in there which is always fun, and it meant that I wasn’t annoyed by anyone else. The film was alright – I was almost irritated that it didn’t then go into episode IV with the destruction of the Death Star, but it was enjoyable enough. I liked the sassy robot. 

This evening I’m trying the steroid paste for my mouth. It’s not so bad.

 

The 2nd of December. 

A decidedly less busy day. My body was still all awake last night so I didn’t sleep well, but I didn’t have to get up early so that was okay. 

This morning I got to have Buck’s Fizz marmalade on toast for breakfast, then I spent the rest of it writing about yesterday, which I still need to type up. I’ll do it after dinner tonight. 

I had to go and pick up a parcel from the sorting office, where there was a very long queue of people doing the same. Then on the way home, we went to Lee’s so Daddy could look at her kitchen light. I petted her kitties and Daddy took the lights apart. Unfortunately it was not a simple solution, and basically she needs a whole new fitting. 

We came home for lunch, then went to see Moana. It seemed like we were going to be the only ones there, then a family with three children under five came in and ruined it. The parents did try to keep them quiet so I didn’t get as annoyed as I might have. That film is really lovely (as is the short film at the beginning), and I only cried twice.

Daddy had collapsed the chair while we were watching the film, then when he put it back up, it hadn’t clicked into place so as I was driving out, it collapsed with me in it and I was so mad I didn’t speak to him for twenty minutes. He’s fixed it now. 

The 3rd of December. 

We had some plans today to go into town for a craft fair and some street food, but I woke up to a call from Shaki in a crisis. Jen had fallen and was in hospital with a broken collarbone, so someone needed to take her six six-week-old kittens while she was unable to look after them. 

Obviously I was only too happy to oblige. About an hour after talking to her, she was here with tiny balls of fluff and I fell in love. We don’t know what they’re called so I have named them ridiculous names – Derpy, Floofer, Boofer, Tiny Tim, Pretty Kitty and Kitty Purry (I know Katy Perry’s cat is called that bit she was the first one to purr so it seemed appropriate). 

So really, apart from eating and going out to buy the Christmas tree (not to put up yet, just to have before all that good ones go), I have not left the room with them in. They are just so CUTE, I have been sending photos to people all day. I could just sit and stare at them forever.