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The 6th of July.

Ah, home again, where the water from the tap tastes good.

Up very early because we left before half past eight. First, we drove to Ipswich to drop off Christine at the station there, then we continued for three and a half hours to home. My back was horrific.

We got here just before one, so we had time to pee and have a drink before Mommy and I went to The Spire for my cross-match. The receptionist sent me to the wrong place, so we wasted twenty minutes waiting for someone who wasn’t coming. Thankfully, a member of staff was helpful, and suddenly everything happened very quickly. I went to the right place, and the woman in charge came to apologise profusely and make sure shit got done. A nurse came to get me, and she’d bleeped a doctor to bleed me. He had to have two goes, but he got what we needed. On the way out, we were stopped by the manager again, who qoffered us free coffee and cake! We said yes please, because we hadn’t eaten since breakfast, and it was delicious.

We stopped at M&S on the way home to buy some dinner, then this afternoon, I have had my first Hibiscrub shower (I have to have another one in the morning) and a hairwash. Having to blow dry one’s hair in this weather is awful.

I do hope I sleep tonight.

The 7th of July.

Liposuction day!

I am exhausted, swollen, oozy and sore.

I got up early to try and drink loads of water before I had to be nil by mouth at 11. We got to The Spire at about twenty past, and someone from the ward came to get me and take me to my room. It was a slightly nicer version of an NHS cubicle room – pretty much the same, but I could lock my cupboard and I had a wardrobe. Fancy.

A nurse came to admit me and do blood pressure, sats and get a urine sample. Then they sent the doctor I saw yesterday to try and get some more blood from me because they were unhappy with the group and save from then. Unfortunately, my veins did not want to cooperate, and after two tries he decided he would let the anaesthetist try in theatre when they put my cannula in.

The anaesthetist himself, Gerwyn, came to see me next and we talked about all the boxes I had ticked on the form (he thinks I probably did break the record). We discussed the regional block, the risks, what else we might need to do. It all sounded very promising so that was grand and off he went. Then we just had to wait for Anne!

She came just after two o’clock and drew all over my arm to show where she was going to go in (basically everywhere), took some pictures for comparison, then I signed the consent form and it was time to go!

In the anaesthetic room, Gerwyn had two attempts at the cannula, unfortunately settling on the vein in the underside of my wrist, although he did put some local anaesthetic in first so it wasn’t as uncomfortable. Couldn’t get any blood but it was unlikely that I’d need a transfusion so nevermind. Then he ultrasounded around my collarbone to find the nerves he wanted to use to make my arm numb. We had to wait for it to kick in, then he started spraying me with the cold spray and poking me with a blunt needle to see what I could feel. Turns out a brachial block can’t numb the inside of the upper arm or the back of it, so they would try and get some local infiltration in theatre.

When we went in, I asked if we were going to do a Who, which they all found very amusing because nobody had ever asked that before, then they asked if I would lead it, so I did! I was prepped, made all clean, some leg massagers were attached to my calves to prevent me from getting another DVT, and a screen was erected in front of my face to keep the sterile and non-sterile areas separate. That was annoying, because I had wanted to watch. However, they asked if I wanted any music to entertain me, so I requested Death Cab. They were unsure until they heard it, and then they realised they are lovely so we just listened to them for two hours while Anne hoovered all the extra fat out of my arm. The noise is like a combination of an electric toothbrush and a drill. And in the places where it wasn’t numb and the local anaesthetic wasn’t reaching, it felt like she was shoving a long drill bit in and out of my arm. It was painful enough to get past just clenching my jaw – I screwed up my face a bit and even emitted an “Ow.” That means it is bad. If you are planning on having liposuction ever, I would recommend making sure you can be entirely numb, and if you can’t, be asleep. It’s not pleasant. When she was finished, all the little holes got stitched up, then covered in Mepore dressings. My entire arm is Mepore. Then, they had to try to get a compression garment over the top without messing up all the dressings. I had a quick look, and she was not kidding about the bruising. It’s rather dramatic. That was tricky, but they did a reasonable job. Blood and fluid has oozed out through it constantly since then, and it’s supposed to carry on until tomorrow evening. I’m not supposed to change the dressings for ten days, but I can’t see how they’ll still be viable even after tomorrow. I’ll ask Anne when she comes round in the morning.

When it was all done, at about quarter to five, I was taken to recovery, where we saw the very end of the football (It’s coming home!) and everybody told me how well I’d done. Anne said it went really well, and she removed a whole litre of fat. A litre! Even she didn’t expect there to be that much. After about half an hour and a much needed glass of water, I was taken back to the ward.

Here, I have had to do everything one handed, because my right arm was useless until about 9. I can flop it about, like Harry Potter does when Gilderoy Lockhart magics away his bones. I managed to get my phone out of the cupboard and ring Mommy, so she could come and see me because she wanted to. Then I rang Christine to tell her how it had gone, because it was easier than texting. I was brought the sandwich I’d ordered before surgery and some coffee, which happily did not taste like garbage. I was so hungry but it’s hard to eat an egg mayo sandwich with only one hand. Mommy arrived, I told her all that had happened, and she helped me sort out the sheets and shuffle myself up the bed. She left at about twenty past seven, and I lay and waited for my arm to come back to me, sending her a video every time the mobility moved up the arm a bit. By 9, I had regained most of the movement and sensation. It’s got its cons though – now I can feel again, I’m aware that it is quite achy. Will ask the nurses for some codeine, see if that helps. Then I will try to go to sleep. Not feeling optimistic.

The 21st of January.

Happy Birthday to me!

I woke up to major snow flurries that went on for most of the morning. I had my breakfast and coffee, then opened my presents. I got several wool vouchers, a yarn bowl, two crochet hook rolls, some money, pyjama bottoms, Fry’s Peppermint creams, and multiple bunches of flowers. I also appropriated some After Eight leaves from the kitchen into my present pile.

The rest of my morning was spent writing up a blog post, watching Sunday Brunch, and talking to Christine when she rang after her run. Taid also phoned to wish me a happy birthday and make sure his card had come. He mentioned that 27 was the year he met Betty, my Grandma who died from leukaemia. I said I could only hope to be so fortunate.

Becky and Alison came round this afternoon (separately), both bearing flowers so the living room is blooming. We had some birthday cake (chocolate and cinnamon streusel cake) and caught up on family and school stuff. Nice to talk about non-hospital things.

My birthday dinner was duck marinaded in sloe gin with dauphinoise potatoes, then pancakes. It was super delicious, and I am so full, I need to sleep.

The 22nd of January.

Birthday done, and I begin my 28th year of life. Who would have expected that?

To begin, I spent most of the day crocheting. So much so, that the bunny is finished, so it has been worth it. This morning I made both legs and the tail while watching some Bones, then lunch. No fancy scrambled eggs and smoked salmon like yesterday.

This afternoon, I embroidered the bunny’s face, then put him together. While Mommy was at Grandma’s, I talked to Aunty Audrey on the phone, because she’d rung Grandma but her phone was off. I explained why, and updated her on how Grandma is. Then we had a chat about how I am, and how she chases away the cat that comes in her garden.

After that, I thought I would read some more of Gnomon. I’m getting through it, but will probably go with a smaller volume next. Not the Stephen King one I got for Christmas.

The 16th of September. 

I have to keep reminding myself that today is not Saturday for some reason. It just hasn’t felt Saturday-like to me. 

It should have been obvious to me from the start, because I spent the morning in front of Saturday Kitchen. For a lot of it, I was consulting with Emma on her suspected skin GvHD, then writing up a blog post. Couldn’t remember if I had to do that or not until I checked. Brain wasn’t at home today. 

Then again, it kicked in as we watched Only Connect over lunch, because we got several points outside of our normal remit (missing vowels). Then this afternoon, I did a bit of podcast listening, made a couple of visits to the kittens, and finished off the scarf I started yesterday while catching up on Celebrity Masterchef. Finally, I am free of Lesley Garrett. Quite glad to be rid of the Reverend Kate too, because she was becoming rather infuriating. 

Last night, Hugo remained sat on my lap without being constantly fed treats. This is a major win. Henrietta, however, made me bleed again. 

The 17th of September. 

Right, today is Sunday. Definitely. Woke up mid-Sunday Brunch because it started early, and had just got downstairs when Mommy and Daddy were came back from taking Grandma to church. I had my breakfast, then went back upstairs to make myself presentable for going out, as we were going to Birmingham Independent Festival at Aston Hall. 

They waited for Grandma to call once she was done with coffee, then I was to be ready to go out upon their return. I petted the kittens (got some actual audible purrs from Hugo, yes!), put my boots on and off we went. 

We’d almost arrived, when Mommy realised she’d forgotten the tickets. Thankfully, she was able to forward me the email and we could just show the attachment to get in. Phew!

It was pretty much all outside, and the weather was nice, so we looked around at all the different food stalls, trying to decide what to eat. I played it safe and went for a margherita pizza which was a good choice because it had a really soft, doughy crust, just how I like. I found a place to sit and eat while I waited for my parents to join me, but first I was checked out by a wasp. It decided to fly really close to my face and land on my glasses, then come round and land on my ear, right on the tragus and I started to get genuinely worried that it might sting my face or crawl in my ear. My tactic is usually to stay really still, because if one flails about while in a wheelchair then people think you are having some kind of episode. It eventually flew off, and I was texting Christine about it when it came back and landed on my finger. Fuck’s sake. Thankfully, Daddy came along then and it went away for good. 

We ate our lunches, got some coffee from Faculty, then I got a beaver tail from Cake Doctor, which is dough, deep-fried and rolled in cinnamon sugar. So good. There were then craft stalls inside to look at, but they ended up not being really anything we wanted. In fact, there was more food, so I bought a chocolate custard doughnut for later. I am full of sugar. 

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The 8th of July.

Oh I have had such a nice day. This morning was kind of soft and quiet; pootled about in my pyjamas, had my coffee, petted the floofs (Bree is getting better at tolerating it), then went back upstairs to get dressed for coffee and cake with Vicky this afternoon. 

She was actually early (really she had no excuse to be late because 200° is pretty much next door to where she lives) so when I got there, she had already got a cosy table. I had vouchers for free coffees so I got us both nitros and a slice of chocolate and banana loaf, then she purchased a sandwich which had peaches in but was apparently enjoyable!

We just had a lovely couple of hours, eating and talking about all the things – the saga of my arm, Glastonbury, HER ENGAGEMENT 😍, my lack of love life (she is going to do some matchmaking), Pride, politics. I do love her. If cancer has given me anything, it is some really fucking great friends. 

Since getting home, I have done much writing about yesterday and today. Tomorrow morning will involve lots of typing. 

The 9th of July. 

Just counting down the days until Wednesday. Please, please work. 

I slept really badly, for no apparent reason. Spent my morning doing the blog posts that were due with Sunday Brunch on in the background. Had lunch late because Mommy and Daddy were emptying Sadie’s garage of all of Christine’s crap, then spent an hour in my bedroom with a  podcast, checking my new jumper fit (it does). 

Back downstairs, we had to shut the cats in the bathroom while a mattress got added to their setup, and they did not like that, so then I sat with them (once they had been set free) and watched some Orphan Black. Halfway through season 3 now. No Wimbledon today; Anniversary games instead. Mommy has been shouting at the tv. 

Got to ring a CNS in the morning because not all the bloods that needed to be done haven’t been, so I suspect I’ll need to go back to clinic so they have all the information on Wednesday. I remember Neil saying what tests I needed and they had all the forms so I suspect the labs have fucked up.

 

The 12th of June.

It’s Daddy’s birthday!

He had already gone to work by the time I got up, which was a good thing because I hadn’t written his card yet. We’re going to take him to the Pink Floyd exhibition in London for his present, so I didn’t have to worry about that.

I had a phone call with Anthony Nolan this morning because they need examples of post-transplant care, so I was telling her how excellent mine has been. I know not everyone is so lucky. Then I had a chat with Nationwide because they had frozen my debit account for no apparent reason and hadn’t told me. It turns out that I had used it at a cashpoint or on a website that has left me exposed to fraud so they’ve had to cancel it. Well, that’s fine, but they could have sent me a letter? I’ll get a new card,it’s all fine.

This afternoon, Mommy and I went into town to take back all the kimonos I didn’t need. I also needed to get some facewipes, then we went into Selfridges to get Daddy some token bits – essentially fudge. I also bought myself some espresso chocolate spread so I’m very much looking forward to my toast in the morning.

Once home, I finished crocheting the bear, so he can go in the post this week!

The 13th of June.

I am annoyed and sad. Finally managed to speak to Tracey (the booking coordinator) and she hasn’t even had the paperwork yet. I have haematology clinic tomorrow so we’ll get them to chase Andrew. It’s all well and good for him to say “Yes we need to do another venoplasty” but if he doesn’t send the paperwork for three weeks I’m going to have to wait even longer for this nightmare to be over. It has been six months and it should not be this hard.

My alarm didn’t go off this morning so I didn’t wake up until quarter past ten. Thankfully I didn’t have anything that needed doing, but I still don’t like waking up that late. I got to have my coffee spread on toast for breakfast though, so there was that.

Since talking to Tracey early this afternoon, the heavy cloud has descended. I don’t think it’ll be a long-term storm, but it’s here all the same. I’ve just sat crocheting, listening to podcasts, trying not to think about it. I’m just so tired and it feels like nobody is trying.

The 4th of June. 

Recovery day. I was woken by the dawn at a ridiculous time again but today I put a flannel over my eyes and went back to sleep until half past nine. Then I had to heave myself out of bed which was not easy because my back was fucking awful, having been sat in terrible chairs all day yesterday.

There was a family get-together at a pub at one o’clock, so we arrived to big hugs from Hilary and Jeremy (both she and I were suffering a little) and took seats next to Tilly, Sophie and Peter. Inevitably, we ended up discussing London and the events of last night. I can’t help but feel this is why we need a Labour government more than ever, because the Tory Theresa May way is evidently ineffective, particularly when she has decimated the police service and accused them of “crying wolf” when they warned her how that would end.

The mood lifted when we were brought food – life seems a little bit less dark when you are surrounded by family and mac’n’cheese. I was having to eat with one hand while I used the other as a visor because my eyes were not tolerating any light today. It has been difficult.

I got to a point at which I had to go to the bathroom, which I really didn’t want to have to do because I had to walk and it was pissing it down with rain. I had Mommy walk with me, and as soon as I got inside I had to commandeer a chair from a random table so I could get my breath back. I suddenly became aware of how pathetic I must have looked when I heard Mommy say “It’s okay, she just needs to get her breath back”. Yeah, there’s nothing that can be done to help, I just need to breathe. We got Daddy to bring the oxygen for me to return to the marquee. Couldn’t do that again.

For the last hour, our table was joined by John and Maddie (who had been there already, but mingling with other people) and we talked about the amount of medical professionals who had been there last night, and plans for the rest of the week. They are going to Falmouth for a few days before they go on honeymoon, so I was recommending all my favourite places.

I think we left just after three? I curled myself up in the car with the oxygen, much like last night, except today I was a bit damp too thanks to the rain. We took Taid back to his hotel, then home, where I ate the brownie I bought at the Gloucester services and Christine and I watched last night’s Doctor Who. I’m very tired.

The 5th of June. 

Rain. So much rain. I thought it best to stay inside. 90% of my day has been spent on the sofa, which has been so much better for my back. I can stand a bit more upright today.

Most of my mornings right now involve trying to adjust to the daylight, creating a visor with my hands, listening to the news. I had to mute it today when Theresa May started her speech having a go at Jeremy Corbyn when she has LITERALLY BEEN IN CHARGE FOR SEVEN YEARS. Anyway.

Mommy and Daddy went out about noon to have lunch with Taid, then take him to the service station where he was meeting his coach to Looe. Christine stayed with me (I was just not up to going out for the fourth day in a row) and she bought us lunch from the bakery round the corner. I had a chicken mayonnaise sandwich and a vast Belgian bun – really tasty and a good bake (as Mary and Paul would say) but really enormous. I was incredibly full afterwards. We noticed Pitch Perfect 2 has arrived on Netflix so we watched that while we ate and had a lovely time singing along (as did the crow that has been sat outside our window all day).

I actually managed to do a small amount of crochet today for the first time in weeks – just a small pocket to keep my eye drops in (they have to be kept out of the light). Still, it is a start. I still have a doily to go back to but I’m not sure which hook I was using for it. Erk.

Jesus Christ I am so fucking tired. Apparently we might have a venture out tomorrow. I want to stay in bed.

The 26th of February. 

Happy Birthday Mommy!

I had a rather dodgy sleep, I think because of eating rich food much later than usual. Fucks up my system. 

Mommy opened her presents while I ate my toast. I gave her a teeny pot for putting herbs or a tiny plant in, and an enormous book of pictures of dogs. It’s got nowhere to live, but it amused her, which is what’s important. Besides, Tuesday is her proper present. 

She and Daddy went to pick up Grandma, while Christine finished cooking all the food and I wrote up a blog post, then twiddled my thumbs until it was time for lunch. As soon as we saw the Easts/Reames materialise with cake, we were up and opening the door. So hungry!

The afternoon has been rugby, drinking and eating. Christine, Becky, James, Jonathan and I decamped into the living room, where there was much bickering and teasing, but all in loving intent. We are essentially family.

Christine had to leave at twenty to four, so we cut the cake, but mine is still beside me, waiting for my tummy to have room for it. I’ll get there.

The 27th of February. 

Oh dear, I had another terrible night. It took me hours to fall asleep – I think on Tuesday night I might have a Zopiclone if things don’t improve. I would do it tonight, but I’d like to remember tomorrow. 

No excitement today. I rang the GP about getting some more stuff added to my repeat prescription, and left a message for Imelda, Andrew’s secretary, but she hasn’t called me back. Will try again in the morning. 

Otherwise, I have been crocheting, and Mommy and I watched the final three episodes of Case. It was not completely satisfying – I don’t see why the murderer had to get killed, instead of being put in prison, especially as they were on their way to arrest him. They’ve left it open for a second series (on a different thread) but I don’t know if we will bother.

I am very excited for Mommy’s birthday surprise tomorrow. I hope she enjoys it.