The 20th of June.

I stayed up a bit late for me last night to watch the live stream of Death Cab from Scala. I couldn’t go, and they’re not coming here on their tour, so that was my only opportunity. I’m quite glad I wasn’t there, because it was apparently disgustingly hot. I just love to watch Ben Gibbard dance. It makes me a bit sad too, because the thing I miss most about being able-bodied is being to sing and dance at the same time. So much.

Today, I was up early for oxygen clinic, which is usually very straightforward. We didn’t get off to a great start, because someone annoyed Mommy in the car park, so she decided to follow them, then we were about to park in a space when a woman decided she was going to try and swing into it, going against the one way system. We were not having this, so honked the horn at her loads and shouted at her through the window that this was not allowed and she had to reverse. Really don’t know where this burst of rage came from, but it was very funny.

Clinic itself was fine! Apart from the machine not working the first time so the nurse had to stab my ear twice. But my blood gas was better than last year! Not really surprising when at my last appointment I was still recovering from pneumonia/fungal infection but still, it’s pleasing.

This afternoon, I have made hexagons. I have completed the first set of nineteen! And I got Dolly to come out for a treat stick and she stayed out. Progress!

The 21st of June.

Well I had every intention of going to the gym when I got up this morning, but unfortunately we’ve had no cars so that idea was quickly shelved. Mommy’s car was going into the garage to be fixed after she scraped it along the wall, but then Daddy’s had to go in as well for some valve/charcoal problem that arose yesterday. Therefore, no cars, no gym.

This morning, I spoke to the train assistance people because I accidentally booked it twice for the same journey, so I cancelled the one in which they’d put me in coach A because I hate that space. Then I rang the Reservations Team at The Spire, so I’m seeing the lymphoedema nurse of Tuesday to fit me for my post-op sleeve, then having my pre-op assessment on Wednesday. I can’t believe it’s going to happen soon. I know it might seem trivial, but I have lived with an arm that is 37% bigger than the other for a year and a half, just as I’d actually developed a pretty healthy relationship with my body. There’s so much about myself that I can’t change and don’t have a choice about learning to live with, but I can fix this, and I’m going to.

After lunch: hexagons. Attempted to touch Dolly which made her jump and she’s spent that afternoon on top of the china cabinet, way out of reach. Maybe I was being optimistic.

The 18th of June.

I am pleasantly not knackered today. Had a fairly boring morning, typing up two blog posts on the past four days. I couldn’t be arsed to sort out the pictures so that’s a job for tomorrow. I also rang Anne Dancey’s secretary, Gayle, but she wasn’t there so I’ll have to try again tomorrow.

This afternoon, I gymmed. Did a few different things to try to keep myself from getting bored. Binned off the bicep curl machine because I don’t feel like it’s effective, did it with free weights instead and now my arms are a bit trembly so it definitely did something. When I got home, I had a phone call from Lynn, Dolly’s previous fosterer (sort of) to see how she is getting on. I had to give her the bad news that she has gone rather backwards. She is coming out for food and the litter tray, just like when she first arrived. Obviously had something incredibly traumatic happen in her first home and finds it very difficult to trust humans. Poor floof.

The 19th of June.

I hurt today. My bum and arms are protesting after the gym yesterday, and Trine had to do a lot of work on my neck because it had a terrible weekend. Ergo, much pain this afternoon.

Before the chiro, I rang Gayle again to see when we could schedule my liposuction. She said she had to move some people around, and would call me back, so we left it at that. Post-neck-kneading, we went to see if we could find a soft brush for Dolly, and got a few bits from Tesco. We have procured a baby brush from Boots, so we’ll see if she hates that one too.

Wool for my blanket arrived while we were out, so after lunch (and The Bridge), I started crocheting hexagons. I’ve done twelve, got ninety one left. I’m going to have to be somewhat industrious. But I’m excited to see how it comes out!

I rang Gayle back at about half two because she hadn’t got back to me, and the upshot is that provided the nurses can fit my pre-op in in time, I’ll be having it done on the 7th of July! And shortly after that, the pain nurse rang to talk about my injections. I told her that they’d had no effect, and she’s going to get me another appointment with Dr. Blaney, although god knows when that’ll be. Cannabis oil it is! 

The 16th of June.

Three hours of sleep. Street noise, bin lorries, club music unbelievable. Drop off about four. Up at seven. Pad about, make disgusting scummy tea. Refuse hotel breakfast, insist we go on family trip to Hjem for delightful Danish pastries and granola and really good coffee. Feel better. Go to V&A to meet Christine. She and Daddy go to Ocean Liners, Mommy to fashion, I go to miniature portraits, except the wrong way via household objects. Finally get to tiny pictures, just reach the end when Auntie Hilary texts me to say she and Jeremy are here. I sweep round jewellery, marvelling at the sparkly things, go to find family. Go to restaurant, and spend three hours eating and catching up on life in detail. Have to leave at three to get back to Euston for train home. Big hugs. Taxi to station. Buy fruity drink and magazines. Get put in least favourite wheelchair position. Train stops at Rugby because of suicide. Everyone gets off and we wait for ramp. Then train is allowed to go to Coventry; we go alone. Alight at Coventry, find ourselves stuck. Wait for coach. For some reason, no coaches will go to Birmingham so after 40 minutes we are put in a taxi. Driver gets lost trying to find New Street station so we end up getting out in Chinatown. Daddy goes to get the car from the NIA car park, Mommy and I go to the station to get food from M&S, wait for Daddy. He picks us up, we drive home, get here just after eight, two hours late. Pain indescribable. Cushions feel like clouds. I eat crumpets. I take Zopiclone. I collapse.

The 17th of June.

No energy today. Had two Zopiclone last night, so today I’m useless but I don’t care. My bed was amazing.

Unsurprisingly, I haven’t much to say. This morning, during breakfast and coffee, I watched Sunday Brunch (sort of – I couldn’t tell you what happened). I wanted to give crocheting a hexagon a try because I’m going to make a blanket of them. Thought I ought to practise. When getting out a hook, I discovered that two have gone missing (the 2.5mm and the 10mm). I had the 10 out not long ago to make the multicoloured cardigan, yet it has disappeared. We’ve searched everywhere but they’re nowhere to be found. I can’t lie, I was so tired and confused, I nearly cried.

Dolly is back under the chair (she managed to get under the front which is frankly very impressive) and not coming out for anything, so this afternoon I sat with her, crocheting a hexagon with one of the hooks I do have, and watching The Incredibles. Nothing that required memory or attention. By the end, I’d got her to eat a Dreamie I put right in front of her face.

After that, I wrote about the weekend and now it is time for partridge. I want to go to bed for a week.

The 14th of June.

Today has revolved around Dolly.

She was supposed to be at the vet this morning for her second vaccinations. We had one chance, so we put some food in the carrier. Unfortunately, we fucked it up and she ran away to under the chair. I rang Lydon’s, and they were able to reschedule her for 5pm.

We left her for the rest of the morning, and vowed to try again later with the help of Shaki.

I went to sit with her this afternoon, watching Bates Motel and hoping she would emerge from her hiding place. Eventually, she crept out, and I had to do the slowest movements known to man, swinging my legs over the arm of the chair away from her, sort of thrusting my pelvis up so I could get out of the chair and on to the floor. I crawled to behind the chair, and I shoved a bunch of pillows underneath so she couldn’t hide under there again.

Then we had one more shot before the 5pm appointment. She had, miraculously, gone over to the carrier, even inside, but I was at the other end of the room so couldn’t shut the door. Mommy came in with some food, so I slid a bowl over to her, and she put it in the very back of the carrier. Dolly slowly climbed in, checking on Mommy through the slits in the side. When I could see that she was eating and not looking, I instructed her to lean over silently and shut the door. Victory!

At the vet, she was actually okay! A bit scared, but Daniel was able to do the injection and she didn’t bite or scratch. Now we have to go back to basics with her. Time for some hard work.

The 15th of June.

I’m going to write about today and tomorrow in a slightly different way, as more of a record than my usual fashion. I just don’t have the energy to do it properly, so I’m sorry if it’s weird. A lot of it has been travelling. We have been to London to go to Space Shambles at the Royal Albert Hall for Daddy’s birthday present.

Train to Euston. I have to make a couple who are sitting in the wheelchair space move which enrages them but unfortunately for them it says my name above the seat and therefore they have to shift. Taxi to the Serpentine. Lunch in café in Hyde Park. Bimble through park to hotel, spotting all the good dogs out for a walk on a sunny day. Arrive at hotel, immediate disappointment. Had not realised when booking that it is not wheelchair accessible. There is one sentence on the website saying that the lift starts from the first floor. No mention of the fact that said lift has no lights, an unreliable door and a terrifying suspension. I climb the stairs but am exhausted and furious. Unpack. Go out to explore Whole Foods. Get very excited by all the baked goods. Buy a cinnamon swirl from the box of Crosstown Doughnuts. Go up and have fourth coffee of the day while eating doughnut. Decide to head for Royal Albert Hall, taking a detour around Natural History Museum to kill time until dinner reservation. Meet Christine, go to Verdi for pre-show pizza. I manage half, struggle to stay awake. Get shown a photo of a genuinely ugly baby and I laugh so hard I cry. Eat some blood orange and lime gelato. Time for show. Stash wheelchair, slyly retrieving water bottle from underneath, avoiding confiscation at bag check. Find seats, find scarf to filter air through to prevent choking on dry ice. Spend the next three hours listening to scientists and astronauts. Grace Petrie sings a lovely song. The final act are a band who play too loudly for too long. Time to go. Worn out and in pain.

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 10th of June.

Today has sucked.

I didn’t think I had a particularly bad night, but I must have, because I have been struggling to keep my eyes open all afternoon. However, my body didn’t seem to deem it bad enough to be able to have a nap, so a second coffee at 4pm was my only way to stay awake.

It started off badly because I found out that another one of my friends has died. A guy called Ash from my TCT group, one of the few people in there that I actually liked, relapsed a few months ago. He’d been really positive about his prognosis but evidently that wasn’t enough. And I can’t stop thinking about death.

That put a dark cloud over the whole day, and I wanted to kind of retreat from the world, so I crocheted. Just going back and forth doing the collar of the cardigan, and it takes twenty minutes to do a row. Given that there are 24 rows of the collar, it’s kept me busy all day, with the tennis burbling in the background. I’ve got eight rows left, so that’s nearly three hours of work remaining.

Dolly is still sad, and now she’s getting angsty with me when I stroke her. I’ve never had to deal with this before.

The 11th of June.

I was fully aware of having a terrible night because it was so warm, but today I have not been exhausted, which of course makes perfect sense.

Woke up to find a note under my door saying Mommy was over the road, but to text her when I got up so she’d know when to come back for us to go into town. She had left my breakfast prepared because she is an angel, so I didn’t have to do too much standing and cause myself pain. She returned as I was finishing my coffee, and we went shopping for Daddy’s birthday presents and other errands. I got him some fudge and a nanoblocks astronaut, then I needed some more body butter and hand cream. I had already got him a card, at least.

Home, and after lunch, it was time to power through the last few rows of the collar. I have just been doing that solidly all afternoon while catching up on Humans, and I am pleased to say I have finished! I have weaved in all the ends, so now I have to attach the sleeves. I really hope they’re long enough.

The 8th of June.

All the kittens are gone!

Had a slightly stressful but then great start to the day. Janelle Monae is playing The Roundhouse in September and tickets went on sale at 9am. Christine and I both wanted to go, so she was going to book, but was having trouble. I immediately got on the phone and remarkably got through to someone very quickly. I asked about booking an accessible seat with a companion, and it seemed like she couldn’t sell me one, as if they weren’t available. I was not on board with this, so got her to inquire further. She went to talk to the ticketing people, and when she returned, a seat was miraculously available! So now Christine and I are going to scream our lungs out to Americans in September. So excited!

Rest of the day has been kitty paperwork and adoptions. Dot went first, about half two, amazingly without too much fuss. I have been sent photos of her on the sofa of her new home already. Then Dusty and Daphne have just left, off to an enormous cat tree, such I am sure they will absolutely love.

I just hope Dolly isn’t too sad now.

The 9th of June.

Today just seemed to get away from me.

This morning, I got up and dressed for the gym, because nothing was particularly painful. Well, no more than usual. I ended up having my breakfast a little late, and then by the time I’d finished my coffee it was eleven o’clock and I don’t know how that happened.

I did a little bit of crochet before lunch, which we ate while watching Trooping the Colour. It always reminds me of “Be Prepared” from The Lion King, when all the hyenas march past Scar and salute.

The gym was hard today. I had a really scary moment after my second set of squats, which is the first thing I do. I normally do sets of eight, which take my heart rate up to about 158. Two minutes of recovery, start again. I thought I’d try to do nine, and it was just one squat too many. I wouldn’t say I had a panic attack, but I think briefly I knew how one feels. I was frighteningly breathless, and my mind started racing with bad possibilities. My breath not coming back, or having to move, or what if I need oxygen I don’t have any oxygen. I don’t think I can put into words the terror that spreads through me when I am shaking, doubled over, squeezing whatever is in my hands, trying to concentrate only on breathing, not hyperventilating. I started to think I was going to have to text someone to come and get me, because I couldn’t see myself carrying on today, definitely not climbing the stairs. But the breathing came back, and I talked myself down, giving myself time before starting the next set and I got to the end of my routine. Climbed the stairs. Just have to breathe.