Archives For December

The 30th of December.

Is today worse than New Year’s Eve? I think so. The tv is definitely very poor – I had no interest in any of the films on today. I have set Carrie to record tonight but that is not for festive viewing.

This morning I wrote up a blog post, then watched Raymond Blanc dick around on Saturday Kitchen while crocheting the never ending shawl.

After lunch, I had a hairwash, then sat and watched three episodes of Black Mirror while the kittens ran around the room for the first time. First up was Crocodile – thought it was good, interesting premise, to see how far Mia will go, nice twist. Next, USS Callister – I really liked this one. The contrast between the 70’s Space Fleet and the hypermodern present in which the characters and game exist was great, and there was just the right balance of psychopathy and emotion. Really smart. Last I saw Hang the DJ – this seems to be the one most discussed in promo so I was a little bit wary but it lived up to the hype. I loved Georgina Campbell in this role, a much more likable character than the ones she played in Broadchurch and One of Us. I just really liked the concept and the ending. Good work, Brooker. I’m saving Arkangel and Black Museum until last because I think they’ll be the best. We’ll see.

The 31st of December.

2017 has been a weird year. Physically, I spent the first half of the year feeling like shit with pneumonia and constantly coughing. The second half was spent waiting for appointments, trying to figure out why my arm is still the same, desperate for pain relief for my back, and discovering that the diminished lung function I’d been experiencing since the pneumothorax is permanent.

Emotionally, it’s been pretty miserable. Feeling like an invalid for six months was incredibly depressing – it had been a long time since I’d felt so weak, like I was going to die every time I did something simple. Needing oxygen purely to exist felt humiliating. Then as I started to improve, Dean was going downhill, and we lost him. I haven’t been hit so hard by a death for years. We made no progress on my arm for the entire year, and everyone is still baffled. My back continues to decline, to the point where now I can barely stand. And my lungs are a disaster, so much so that an anaesthetist won’t put me under for even a short procedure.

There were some high points. Taking Mommy to The Ritz, Machynlleth, John and Maddie’s wedding, the Anthony Nolan summer reception, Regina Spektor, my ten year diagnosis anniversary, Amusical, meeting Peter and Sophie’s twins, Christmas at home.

Those were all lovely, but my memories are marred by my body’s myriad of problems. It’s really hard to enjoy things when everything is a trial.

I just want 2018 to be bearable. I’m not hoping for miracles, I just don’t want to feel wretched all the time. I’d like to definitively know what is wrong with my arm and whether we can fix it. I want to be able to move around my house without such immense difficulty, so one of my resolutions is to start exercising again. Nothing vastly energetic, but I know I can build up some muscle mass to at least make things slightly easier. I want to read at least two books a month – I am just accumulating them and they continue to mount up without me making any sort of dent in the pile. I am going to crochet an item of clothing I can wear that is not a hat, scarf or pair of mittens. And I am going to take more photos with people at happy times. I have no photos of me and Dean and it devastates me.

I ended the year the way I always do, or at least the way I always want to – champagne and Christmas cake with my family, in front of the fire. Grateful to be here.

The 28th of December.

Well I have been awake since 6am which is not ideal. I was doing fine, having a lovely sleep, then my body realised it was freezing and decided we needed to experience this. To make it worse, the heating didn’t really seem to kick in until about lunchtime so I felt like a little block of ice. I couldn’t even put my cosy clothes on because Shaki was bringing new kittens this morning and they would ruin them with their claws.

She arrived just before twelve, and stayed for about three quarters of an hour introducing us and catching up. We’ve got three black and white girls; Autumn, Amber and Ava. They’re all quite different so we’ll have no trouble telling them apart, thankfully. Twelve weeks old, but small. And so cute. Particularly Amber, who has long hair. She is also the only one that hisses. I have got purrs out of Autumn already, so she doesn’t look like she’ll be much trouble. They’re all very soft.

Daddy sat with them this afternoon, while I crocheted. I was wrong about the shawl – still not finished. Oh well.

The 29th of December.

Much better sleep. I woke up at six, but fell back to sleep and we surprised by my alarm when it went off at nine so that was pleasant.

I’m still crocheting this flipping shawl (just carrying on until I run out of wool) so I did that for most of the morning. Still not finished. I also went to say good morning to the new floofs. They don’t retreat quite so much as they first did.

We have to be with them while they eat, so I sat and watched the shortest episode of Black Mirror, Metalhead. From looking at reviews afterwards, it seems that is the least good one, so I’m quite pleased because it means they can only get better.

This afternoon, we had a family cinema trip to see The Greatest Showman. I’ll be honest, it wasn’t as good as I expected. However, I love the songs, and I had a small cry during This Is Me because it makes me think of Dean. I do miss him ever such a lot. Adam sent me a Christmas card which arrived the other day and it was really beautiful.

The 26th of December.

Bleah, bad sleeping again so I’m having Zopiclone tonight. Therefore, I have only had one glass of champagne today – sleeping tablets and alcohol are not the best mix. I still felt kind of wibbly this morning so thought it wise not to drink too much again.

I put my twosie on (I am so warm) and spent my morning writing about yesterday, watching the rubbish on tv and it has been mainly rubbish today, unfortunately. The Shaun the Sheep film was on, and I remember seeing that with Daddy – such a mistake. Wouldn’t put myself through that again.

Lunch was about half one; Boxing Day ham, then chocolate mousse for everyone (except Taid, too much sugar). Then for the rest of the afternoon I have been reading How to Stop Time, and have finished it. I had started it before, but when I knew I was getting the illustrated version, I stopped. So I picked up where I’d left off, and read the last 125 pages. Next will be one of the enormous books I got yesterday.

Tonight we are having cheese for dinner. Awesome.

The 27th of December.

Welcome to the Merrineum – the period between Christmas and New Year when all the cosy clothes come out, the television options before rather desperate and there isn’t much to do but eat.

So today I have watched Turbo, The Princess and the Frog, Moana and Big Hero 6. It’s been very animation-heavy. While I sat on my arse, Mommy and Christine returned Taid’s room to a state ready for kittens, and Daddy has been driving Taid back to Wales and should be back in about an hour and a half.

I’ve been crocheting a shawl, so worked on that. I think I’ll finish it this evening, then my next projects are things for people’s babies. I need to look and what wool I already have so I don’t waste money on more – I bought rather an expensive jumper in the Farfetch sale yesterday so going to have to be a bit frugal for a while (except on my birthday).

The Zopiclone I had last night worked, thank god, so I had a much better sleep. Let’s hope that’s a return to usual form. Podcasts all night is not what I want to become my norm.

The 23rd of December.

Merry Christmas Eve Eve!

I woke up just after six which was frustrating but what can you do? I just listened to the radio until the heating kicked in.

My day has been very monotonous, but enjoyable. I have sat in the glow of the tree lights, watching films on the tv, crocheting a shawl. This morning was The Boxtrolls (which Christine had not seen before), and Daddy left foot Wales to bring Taid here for Christmas. Mommy went to Grandma’s for their Christmas fayre, and was gone for most of the day.

Christine and I had our lunch (fucking hell, standing up just for the time it takes to make a sandwich was torturous – have to chase Dr. Blaney in January), then she went for a walk. When she returned, we watched Hidden Figures, which has not long finished.

I’m writing early because this evening I’m going to The Electric with Becky to sing along to the Muppets Christmas Carol, as is tradition. I’m very excited. It is the summer of the soul in December.

The 24th of December.

Merry Christmas Eve!

Everything is right. I had a proper sleep – actually woke up at a normal time so I have not needed extra coffee today.

It has been a very similar day to yesterday, for me. Sat in armchair, watched tv, crocheted. I did have a break early afternoon because I had to wrap Grandma’s final present (it only got bought after I’d done all my other wrapping) and that was the only time the table was available.

I just cherish every moment at home this time of year. After three Christmases in a row as an inpatient, and nearly being back in last year, I am always so grateful to be here. To wake up in my own bed, sit in front of the fire, be with people I love for the whole day, not just the hours allowed. I remember in 2007 all presents had to be sterile, and in 2008 I remember being woken for an ultrasound on my new liver, Becky and Alison arriving with a bag of satsumas for me to suck the juice from (I couldn’t digest the flesh) and feeling so sick at the smell of Mommy’s dinner, I had to send her to the bathroom to eat it. In 2009, I was itching like crazy from the shingles, and so breathless I couldn’t walk across my cubicle.

Those should not be Christmas memories. This is why I appreciate home.

The 21st of December.

Happy birthday to my liver! This time nine years ago, Mommy and I were watching The Sunday Night Project (back when it was still acceptable to like Justin Lee Collins). We were aware there might be a liver, but weren’t getting our hopes up in case it wasn’t suitable. Suddenly I was on my way to theatre, and the rest is history!

This morning, Mommy, Christine and I went to Waitrose in Lichfield for some specific food shopping. I don’t know why we had to go there but hey, it’s an outing. A lady told me I had a “cool motor”. And I got a cinnamon bun.

We got back around lunchtime, and this afternoon I watched Elf (while wearing my Elf jumper), then Christine joined me and we watched Inside Out. For most of the film, Sadness is the fucking worst. It is very hard to sympathise when she does so many stupid things. Also, I fast-forwarded the sad bit. No tears today, thank you.

The 22nd of December.

Getting very very festive!

Woke up a little earlier than planned, but that meant I could get my blog post done and have more time to frolic. Well, to be honest, less frolicking, more tv and eating of assorted chocolates.

This afternoon, Christine and I went to see Pitch Perfect 3. There was a massive family in there who I expected to be awful but thankfully they were quiet during the film. There was some chair-kicking but I put a stop to that. Anyway, it was amusing enough for an hour and a half. It’s not as good as the first two, but we enjoyed it. I’ve downloaded the soundtrack.

Since getting home, I have put the decorations on the Christmas cake and iced two sets of cupcakes (they’re not all for us, half are going to Grandma’s).

Oh, and Ruby Rose in the gold suit is everything I want to be.

The 19th of December.

Oh lord I am so tired. I got home about half eleven last night (the gig was much fun), and it took me hours to fall asleep, then I woke up several times so the sleep I did have was not of good quality. I am going to have Zopiclone tonight. Stupid lack of sleep.

So I have been really sleepy all day. I did a blog post this morning, and rummaged through my back up hard drives to find the original photos that were taken during my first stem cell transplant. Ten years ago today, I had my first cells from Christine. All the versions of the photos on my phone were rubbish quality, and I knew there had to be a better one somewhere.

Once I’d found it, I spent a lot of my afternoon trying to compose a tweet to send out to promote Still Standing. It took a stupidly long time for something so insignificant. I’ll probably do the same again on Thursday. Maybe I’ll be better at it then because my brain won’t be mush from not sleeping.

I can’t wait to go to bed.

The 20th of December.

Zopiclone worked. Nice big sleep, thankfully. I could not have coped with the wrapping pain if I was exhausted.

This morning I brought all the presents downstairs and wrote all my Christmas cards. Tidied up the living room table so we can fit food on there. Not much else for me to do until after lunch, really!

Mommy went out to Grandma’s then to pick up Christine from the station. I took everything into the dining room, made myself a peppermint chocolate drinking fudge, put The Polar Express on and it was wrapping time! I thought it would be best if I wrapped everything in the paper first, then did the ribbon on them all after, otherwise I might not have been done by the time Mommy and Christine got back. My paper was stupid and didn’t want to stick together, so I was glad I’d bought string as well as ribbon. Maybe next year I will not do glitter paper.

When The Polar Express finished, I watched a funny little film on Netflix called Pottersville. It was quite amusing, kept me entertained while I covered everything in glitter.

Now I am finished and my back is excruciating but I am done. It was worth it.

The 17th of December.

Much better night. I considered having a Zopiclone, but I thought I would probably get to sleep naturally and I’m glad to say I was correct.

It has been a rather festive day, by all accounts. It had a nice start because I saw Oscar in the garden! Haven’t seen him for ages. Did a blog post, then I was called into the dining room to ice cakes for a hamper. It only took about an hour, but that time sitting at the table killed my back by the end. This does not bode well for wrapping day, considering last year it took me about six hours.

This afternoon, we decorated the tree! Or to put it more accurately, Mommy put things on it in accordance with my directions. I no longer have the lung capacity to move around so much nor the ability to stand for that long because it means agony for my back. I will probably still make adjustments by moving things around but it finally feels Christmassy in our house.

The 18th of December.

Another very Christmassy day!

I had some very stressful dreams about the gig last night, that it was happening and we’d only sold 100 tickets and I couldn’t access the building and it was all terrible. I was so glad to wake up.

Mommy and I went into town this morning so I could get all my wrapping stuff and she could do more Christmas shopping. I started off in Tiger for the paper – I’d seen it online and I wanted to check that it looked the same in real life as it did on the internet. I went round the entire shop (which is not easy in the wheelchair) and found the paper I wanted by the tills. Then I went round again so I could get gift bags and boxes for a few of the things that would be impossible to wrap with just paper. Next was Paperchase for tags, but they didn’t have the ones I wanted, so I had to go to the one in Selfridges where thankfully they had stock, plus tissue paper. No ribbon though. Back to Grand Central, where I went to John Lewis to see if I could find ribbon or wool to tie around my presents. The haberdashery was my saviour, so I got my ribbon. Last year I didn’t get enough, so I may have bought too much, but I’d rather be safe than have to go back for more. No time for that now.

I met back up with Mommy in John Lewis, then we went to the German market so I could have a sausage because otherwise I won’t have one and it’s just not Christmas if I don’t. They are very mean with the napkins – obviously they didn’t order enough so it is one per person! Harsh.

Returned home, and this afternoon I put together Daddy’s crocheted Christmas present while watching Miracle on 34th Street (fast-forwarding all the bits I don’t like) and now all my presents are finished! I can finally relax about things, and have my wrapping day when I am ready.

Out at The Glee tonight for Joe’s Crisis at Christmas gig! Great line-up; Joe Lycett, Joe Pasquale, Kiri Pritchard-McLean, Tom Ward, Guz Kahn and Harry Hill. Very excited.