The 7th & 8th; I don’t think I’ve suddenly got better at everything.

The 7th of August.

Today seems to be the last really hot day. I hope so – last night I slept terribly. I should have had a second coffee at some point but I just never got round to it so now I’m very sleepy.

This morning, I got my blog post done before we went to The Spire. My appointment was meant to be at 11.45, but I ended up swapping with another lady who had another appointment elsewhere and wouldn’t make it. That was fine; I had nowhere else to be.

When I got called in, Julie was amazed at the size difference. She had a look at the sleeve I’m currently wearing and decided I need to go a size and class down, so I’ve got a prescription for that and hopefully Boots have ordered the right one. She also showed Mommy how to do the massage to deal with the remaining fat.

I have spent my afternoon being really cool, playing Rayman. Well, until four o’clock. I did the stupid next level, then a couple more, got The Elixir of Life (after a very frustrating bit) and thought it best to stop there.

Then, back to my dress. Now it’s a lot of back and forth, and I want to go to bed.

The 8th of August.

It is less warm for sure, but when it’s sunny oh boy it’s too much. I’m fairly sure I’m so sensitive because of photopheresis – I always had to wear sunglasses for 48 hours afterwards to try to prevent photophobia. I must admit I was not very diligent so it’s probably my fault that I can’t cope with brightness.

I kind of frittered the morning away doing a whole lot of nothing, apart from a bit of crochet. Keep plugging away at this dress, no matter how tedious this part is.

This afternoon was gym-time. Quiet again – maybe everyone has gone on holiday? I think the very committed girl must have because I now haven’t seen her for two visits on the trot. I had a weird sort of session – I did what I normally do and everything felt the way it normally does but my heart rate wasn’t going as high as usual. I think my heart rate monitor might have been having a wobble because I don’t think I’ve suddenly got better at everything.

The Janelle Monáe tickets came today and I could not be more excited.

 

 

The 30th & 31st; Happy 10th Marrowversary. Again.

The 30th of July.

I’ve had really quite a shit day. My arm has decreased in size which is obviously good, but it means I need to be remeasured for a new sleeve because the current one is almost baggy. I spent all morning trying to ring the people who book the appointments for Julie at The Spire and left a message, but no one answered or got back to me. I rang the main number who bounced me from pillar to post before putting me through to the number that no one was picking up. It was only at lunch time when I tried the main number again (after another no answer) and voiced my frustration did I get to speak to someone. They said they’d been there all morning which just tells me they couldn’t be arsed to talk to me or any patient that called. I finally got an appointment for next week. Hopefully I’m not adversely affected.

Another reason for the shitness of the day was that I put up a post this morning about how I feel about having been in remission for ten years, which I’ve been working on for weeks and was really hard, but the overwhelming lack of reaction makes me feel like very few people really give a fuck. I have had a couple of comments but really I don’t know why I bothered.

Finally, I got a letter from the pain nurse who I talked to on the phone six weeks ago. Turns out the reason I’ve heard nothing is because she only just wrote to Dr. Blaney. Great.

Happy 10th Marrowversary. Again.

The 31st of July.

I feel better today. I got some responses which cheered me up and made me think a bit differently. Plus I went out and had a nice time which perked me up.

Didn’t have time to do much this morning belt going out to meet Sadie at 12. Daddy dropped me off, then went to work to pack up some more of his stuff. I got a text as I was going up in the lift, and it was Sadie telling me that the place we were going to eat wasn’t open yet. Boo. We had a look at what was available instead and settled on Giraffe. Sadie had some spicy rice thing, and I ordered tapas of bao buns, patatas bravas and chorizo. The chorizo ended up being too hot for me so Sadie ate that, but my buns were delicious and the potatoes were fine. Then we shared some churros. Yum. Talked about Love Island, her current/future job, our shared desire to and see The Meg, and stupid people in our lives.

When we finished, she was going the other way to me, so we said goodbye, then I went to Foyles to browse and ended up buying Hunger by Roxane Gay. I then texted Daddy come and pick me up, but traffic meant it took him 25 minutes to get about a mile. Bleah.

Since getting home, I’ve watched the most recent Sharp Objects and the pilot episode of House while crocheting the dress.

I nearly got Dolly on the chair with me last night! Two paws up, thought about it, but no. Soon!

The 24th & 25th; Zero reduction in my back pain.

The 24th of July.

Yep I am very stiff. My bum and legs are making it difficult to walk.

I had a relatively early start, because I had my appointment with Fiona to have the stitch removed. She took out the knot really quickly, then had a bit more of a dig to get out the stitch embedded in the scab, and she did the same again in another so I’m now sporting two dressings under my sleeve.

On the way home, we made a pit stop in Tesco to get some snacks for me post-workout, some more ice creams (mint Cornettos!) and some Azeera Nitro to try. We bought the Americano and Latte ones, and they are both awful. They do not taste like proper nitro coffee. Do not buy them.

This afternoon, I have written up a blog post, done some research into wools I might use for a dress, and worked on a doily. I’m going to have to unravel the last two rounds I’ve done because I’m not happy with them and they’ll bother me if I don’t fix it.

Daddy has had the results of his liver scan and one of the cysts is quite large (8x7x6cm) so he is being referred to the QE. Hopefully he sees one of my friends.

The 25th of July.

I thought I might be back at the gym today but my muscles had other ideas. My gait is still rather cowboy-esque. Plus my abs still hurt when I cough and considering I do that after pretty much every set, I thought I’d wait until tomorrow.

This morning, I got the doily finished. I don’t think it will cope with being ironed, so I ordered some blocking boards and pins from Amazon which will come tomorrow so I can stretch it out and steam it if that seems necessary. Now, next time I make a blanket, or something else that has the potential to curl up, I can keep it satisfyingly flat.

Rosemary came for lunch, so I had a chat with her and showed her some of my crocheted garments, because I don’t think I’d made any last time she was here.

This afternoon, I watched episodes two and three of Sharp Objects. So far it feels like nothing is really moving forward with the investigation but maybe that isn’t the point. Separate to the story, I am amazed by the clever make up of self-harm scars. It really is so skilful and impressive.

I’ve realised I’m taking the highest possible dose of CBD oil capsules and I’ve had zero reduction in my back pain. Fuck’s sake.

The 6th & 7th; She removed a whole litre of fat.

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 28th & 29th; A fat lot of nothing.

The 28th of June.

This is not going to be an interesting entry, I will warn you now.

I woke up at quarter to six for reasons beyond me and couldn’t fight my way back to sleep. I ended up getting up about half seven. Ugh.

I’ve had a fat lot of nothing to do today, really. I made some mini hexagons so I could practise joining them and work out the best way, and the same with bordering. I have a plan now, although putting it into action might be a challenge.

After lunch, I gave The Spire a call because they sent me an appointment for the group and save on the 5th, but we won’t be here then, so I got it rebooked for the 6th at 1.30. We’ll be leaving the house very early on Friday morning. Then I spoke to the pharmacy and they don’t know anything about my antibiotics so I’ve chased that up too.

Then, Sarah came to pick up Dolly. She remembered the carrier and did not want to get in it. Sarah tried to scruff her at one point and got serious scratches for it. Eventually, she kind of trapped her, and back to the cattery they went.

Since then, I’ve had a video of her purring and being stroked so she’s obviously got over it pretty quickly.

The 29th of June.

Driving. Honestly, there is nothing else to say. This morning we packed all the stuff, then Mommy and Daddy went to get the car. They packed the car, then we drove for hours until we got to Aldeburgh. My back fucking kills.

The 26th & 27th; Too hot for existing.

The 26th of June.

Oh god it is too hot for existing. No gym this week – it’s hard enough to breathe doing normal activity in this heat, really don’t think exerting myself is wise.

This morning, I typed up a blog post, although I have just realised that I didn’t actually post it, so I’ll do that once I’ve finished this.

Daddy took me to The Spire for twelve, for my appointment with the lymphoedema nurse. She measured my arm for my sleeve, and apparently I will be wearing it for quite a bit longer than six to eight weeks. I will see her six weeks after the surgery, which is when all the swelling will have calmed down a bit.

On the way home, we went to Tesco to buy ice lollies. Ended up with Calippos, Mini Milks and Fruit Splits, so we have loads of choice. Calippos give me flashbacks to Ward 8 after my liver transplant, became I could gnaw on them and not throw up, because flavoured ice was one of the only things I could actually digest. Eating them now, in the sunshine, is highly preferable.

This afternoon, I have been making my extra hexagons. Three colours left to do.

The 27th of June.

Pre-op day! Had to be there at ten thirty, and Daddy had to go to work but thankfully Alison was able to take us. It was pretty straightforward – we went through my history, albeit briefly, because they don’t need to know everything, talked through what I’m having done, had some bloods done, blood pressure, urine sample. That was entertaining because they gave me a she-wee-like device to get the pee into the bottle. I’m not sure how helpful it was. I’ll need to pick up a prescription for some pre/post-op antibiotics, and I might have to go back the day before for a group and save if they think I might need blood. Unlikely.

This afternoon, I have finished all of the hexagons, for definite this time, and been vaguely aware of the Germany/South Korea match. I also had a somewhat infuriating chat with the mechanic who’s fixing Mommy’s car. I told him multiple times that I wasn’t her, but he refused to hear it and just kept talking so I had to pretend it was my car and tell him I’d get back to him about picking it up. Thankfully not long after that, Daddy got home so he went down there to deal with it. I now understand Mommy’s reaction to that guy.