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The 8th of June. 

Happy Voting Day everyone! Hope you all got down to your polling stations and voted to try to keep the Tories from killing us all. 

I have spent the majority of my day at Lympstone Manor, the new business endeavour of Michael Caines. We left the house at 12 and drove across the River Exe, finding ourselves pretty much directly opposite the place John and Maddie got married. It is a really beautiful venue, incredibly picturesque. Spa weekend would be ideal. 

We started off in the lounge, having drinks. I stuck with non-alcoholic, which I was then very pleased about because my choice of Orange Blossom (orange and passionfruit, elderflower and lemon) was so incredibly delicious. I want it bottled, in bulk. The menus were brought, and I was slightly concerned because it was not what had been on the website (obviously I had already chosen my meal) but I still found tasty choices so my worries were allayed. I initially wanted to order a pork dish for my main, but it had a paprika jus, which I asked to be left off, but then the waiter came back and said that there was basically paprika in everything on the dish, so I decided to change to lemon sole. 

We were brought some amuse-bouches of aubergine mousse and lightly curried lamb croquettes, then taken through to the dining room. It was really far, so I had to have a serious rest when we arrived at the table. I tucked myself in. We were brought bread (so much bread!), and then a fancy teacup full of bisque. I don’t often have a bisque, but from my understanding of how they’re supposed to taste, it was a pretty great bisque. Starters arrived, mine being parmesan and rosemary gnocchi with truffled egg yolks. It was so pretty and the yolks were so beautifully poached and cute, I almost didn’t want to burst them. There were also some mushrooms, but I ignored those. 

The gap between starters and mains was a bit too long – we think there may have been some problem in the kitchen, but when they did arrive, they were worth it. My sole was so delicious, I was glad I couldn’t have the pork. It was so light, everything was cooked perfectly, I could not pick a fault. Then we were brought the dessert menus, which I didn’t need to look at as I’d already decided – chocolate ganache with white chocolate ice cream, thank you. Everything I ate was just exquisite, and I couldn’t recommend it more. While we were having coffee and petit fours (also scrumptious), Michael Caines himself came round to talk to us (and the other diners). Last time a chef did that, it was Alain Roux and I was on a lot of opiates, so I immediately started crying. Thankfully today I was actually able to speak and tell him how much we’d enjoyed everything. 

Now we are back at the house, I am in my pyjamas, and staying hopeful about the election until the news forces me to believe otherwise. My echo chamber will keep me buoyed. 

 

The 9th of June. 

Holy shit we actually did it. Well, we didn’t win, but she’s lost seats, clinging to a coalition with the DUP. I can’t see that lasting. Well, I fucking hope not. 

Anyway! Home day. We had to be out of the house by ten, so once we were packed, we were gone. We went into Exeter, to try to find some presents for people, get some lunch, and pass some of the time before leaving Christine to get her train. John Lewis was pretty disappointing, so then we tootled down to the cathedral. However, I didn’t fancy going round it and neither did Daddy, so we went to find somewhere to have lunch. There was one coffee shop which was very empty and did not look inviting, so we found another called Cakeadoodledoo. A ridiculous name, but they made a good flat white, and when Mommy and Christine joined us, we had some tasty lunch. I had a toasted bagel with egg mayonnaise and it was delightful. Not as great as yesterday’s lunch, but good enough. 

Post-food, it was about one, so we left Christine in the Costa by the station, and set off on our journey home. We stopped at the Gloucester services where I got another Richard Bertinet cinnamon swirl and a cookie dough brownie, and some green juice so I at least have some form of vegetables today. I watched Scream on Netflix for the majority of the car journey, and I now am just looking forward to bed. Back in my own bed, for more than three nights this time. 

The 31st of May.

My own bed is a beautiful place. I had such a nice sleep. 

It has been a busy first day back in the real world! This morning we had to take Sam to the vet for his first set of vaccinations, then they were running so late that we only just had time to take him home before going back out to the chiro. Trine was not impressed to hear I’d been back in hospital for essentially the entire time since I saw her last. Today parts of my back that I didn’t even know were hurting needed working on. Such a mess. 

We came home, had lunch, then I had to get information off Catalog to fill in a form about Sam because I didn’t have an ID sheet for him. His adopter was coming about half past two, so when I finished at two, I went to sit with Sam to say goodbye. He just wanted to sit on me, as always, and we watched the new Pretty Little Liars until the doorbell rang. 

Well, they were instantly smitten. I was not surprised because he is lovely and there was no reason for them to not want him. He even stuck his tongue out, just to be extra cute. They were gone within the hour. I’m expecting a photo of him on one of their laps this evening. 

Once they had left, I returned to the living room and watched new iZombie while doing Cats Protection admin. So exciting. Then this evening, Mommy and I (and my oxygen cylinder) are off to The REP to see some comedy to raise money for refugees. Nish, Joe and Tez are all on but I will not be hanging out because I am still a bit wrecked. Hoping they are all on in the first half because then I can go home. 

 

The 1st of June. 

How is it June so soon? I have written off this year already. For the whole of it, I have been sick and swollen and in pain. I need the next seven months to be better. 

Lots of little jobs to do today. Sorted out all the chargers and power packs to take on holiday, and put my iPod and old iPhone on to charge so I will have all the things to listen to in the car tomorrow. I spent my morning having a mini Agents of S.H.I.E.L.D marathon and putting all the posts I have written over the past three weeks up on my blog. Glad to finally be back up to date, although I need to write them all down in my hand written diary so they match. I still haven’t done the ones from March. 

During our lunch, we watched the Bake Off Creme de la Creme final, and the military men won! We were very pleased as they were our favourites. Then we went upstairs to wash my hair and sort out my clothes that I’m taking away. It is not going to be particularly warm, so it will be a week of jeans and jumpers/cardigans. 

Back downstairs, I painted my nails, but had to get Mommy to do my toes because I cannot see the outline of them clearly. I don’t understand why my eyes are getting worse again when the treatment seemed to be working. It’s not just that stuff is blurry, I’m really photosensitive and it hurts 90% of the time. At least my breathing is improving a bit – I’m only in 0.5 litres of oxygen now so I might be able to do most of the wedding without a tank at my feet. 

The 29th of May. 

Very little to report. Except that the vancomycin and ciprofloxacin appear to have finished! Well, tonight they are not prescribed so presumably they only had it written up until this morning. Which is fine, it means I need literally nothing from the nurses tonight and I can go to bed whenever I want. 

When Mommy arrived at 11, we left straight away because the nurse said I didn’t need to see any doctors and I didn’t need any bloods doing (I thought I did, but she said not). We got home before This Morning had even finished! Amazing. The weather demanded I have beans on toast for lunch, so I ate that while we watched the finale of Project Runway which had been on since I was admitted. 

My legs needed shaving if I am to wear a dress on Saturday at the wedding, so this afternoon I had that task to undertake. It wasn’t fun, strong smells make my breathing more difficult so I was on three litres of oxygen by the time I was done. Everything is so hard. 

We came back to hospital for six o’clock, and it emerged that the phlebotomist had been because I was supposed to have bloods done, so then a doctor had to come and stab me. He had to stab me seven times. For one syringe of blood. My veins just didn’t want to play, I was cold, and he had to seriously dig around. I am going to be quite bruised. 

Nothing else to say. I can’t wait to see the doctors in the morning. I need a plan. I need to go home. 

 

The 30th of May. 

I write this AT HOME. And I don’t have to return to hospital tonight, I am going to sleep in my bed and no one is going to take my blood pressure or shout at me about toast and it will be beautiful. 

Mostly my day has involved waiting. The doctors turned up just after half ten, just a junior and a medical student (after my notes were found as it seemed they’d gone AWOL) and she was pretty happy to discharge me, considering I’m not on any IVs anymore and my CRP has gone down to 18. However, she needed to talk to Ben about my blood pressure drugs and the rest of my discharge plan before I could actually go home. 

He was in coroner’s court all morning, so we didn’t see him until about two. He is happy to restart my Irbesartan which will be good for my blood pressure, and I’ll stay on the voriconazole for a couple of weeks. The PICC will stay in until after I have been deflated because a) it will give them good access for the fun drugs and b) it will be useful if I relapse, so we will have to flush it for a couple of weeks. The only other thing left to sort out was my drugs to take home, and the junior said she’d come back to get a list of what we needed. 

She then didn’t come back until after four, so we had a very boring afternoon, trying to pass the time. Thankfully Philippa also came to see me, so we had fun, and we finally got to leave just after half past six! 

Got a really busy day tomorrow so an early night tonight, but considering I don’t have to wait for anything, I think I’ll manage. That worst part will be climbing the stairs. 

The 16th of March. 

I am home. HOME! I have to go back tomorrow but eh, I get to sleep in my own bed tonight and that is all I care about. 

So the doctors came to see me this morning and said they’d stopped the mero after my 6am dose, so then the only thing that was left to sort out was my oxygen. I explained to them that I do have oxygen at home, so if that was all that was keeping me in, I was very much wasting a bed. They were surprised but pleased to learn this, and said that yes in that case you can go, but we need to confirm with Dr. Sutton. 

Then I spent the rest of the day waiting for it to be confirmed. However, it emerged at about half past four that actually, Dr. Sutton has been on a course all day, but he’d probably agree so that’s fine. But then there were issues with changing the dressing on my line and arranging nurses to flush it. Then they wanted me to come and see the vascular team at eleven o’clock tomorrow, but earlier today the pain team had phoned, saying they’d had a cancellation tomorrow and did I want to come at eleven? Of course, I said yes, so tomorrow I’ll see them, then go up to 516 and they’ll bleep the vascular team, and we’ll talk about my line and hopefully sorting out the motherfucking venoplasty I’ve needed for three months. 

We finally left at six and I am at home and I am really looking forward to my bed. 

The 17th of March. 

Oh, sleep in my own bed is good. I did wake up a couple of times, but so with it for duvet and electric blanket. 

I didn’t get the lie-in I’ve been waiting for because I had my appointment at the pain clinic at eleven. We left at ten to allow for traffic and parking, but even that was not enough as there had been an accident in the Queensway tunnel which made the traffic utterly solid. It was incredibly tedious, but we eventually got to the QE only half an hour late. Thankfully, I was still able to be seen (I did ring to let them know I’d be delayed) and met a Dr. Blaney who has several avenues of thought we might go down – I will start with a patch via the GP, and we have multiple drugs I can try to hopefully find one that works and doesn’t give me side effects. He’s also going to refer me for physio so I will get that appointment at some point. There’s also the option of steroid injections if nothing else works. 

After that, it was up to 516 to see the vascular team about my line. It emerged that nobody up there really knew what was going on, until one of the doctors who’s been seeing me arrived. She went to see Ben about what he wanted, and we went to have some lunch. While sitting in the foyer, I saw a girl I met at Euston recently who I got chatting to about NG tubes (she had one) which was extremely random, but really good because I wasn’t able to get her name or anything before, so now I have a new pal!

Shortly after seeing her, my phone rang, and it was nurse Connor. The doctor had come back and they’d spoken to the IV team and basically, he was going to take my PICC out. That was grand, so we returned to the ward, and I lay down in the consultation room and experienced the lovely sensation of having something really long pulled out of your veins. It’s not painful, but there’s definitely an awareness there. I don’t really remember the last one coming out because I’d had midazolam and they let me do it. Then I had to hang out there for half an hour to make sure I didn’t bleed everywhere, then I escaped (again)!

The 26th of July.

Rest day. I got up at nine from a glorious sleep in my own bed; it was delightful. I love home. Especially taps with pressure. Hooray for gravity! This morning I watched Sunday Brunch and blogged. My lunch was a cheese toastie as we had very little did in the house (Mommy was out buying some more), and I caught up on some stuff, including Humans, which made me cry when Max sacrificed himself and said “If I die, it means I have lived”. I don’t think there is much better one can say. 

When Mommy was back, she washed my hair, I watched a bit of athletics, then we went over the road to give Becky her birthday present and cards and the rest their holiday presents. I got to have a lovely time stroking Rocky – I miss having a strokable pet. Hamilton is not very cuddly. 

Since coming back, I’ve gone through the Konditor & Cook book, wanting to eat all the things, and I fixed a nail that I’d painted dodgily. Such a life of excitement I lead. 

The 27th of July.

Back in the gym today. I had a very disturbing dream in which I was killed then eaten by Hannibal, but still fully conscious and yet unable to feel any pain. The only pain was when a giant caterpillar bit me on the finger so I flung it away. 

This morning we flushed my line and changed the dressing, then Mommy went to give blood and I stayed here and did thrilling things like opening the side gate for the window cleaner. 

After lunch, Mommy took me to the gym where I had a very productive session, except the leg press is still out of order, so I rowed for five minutes instead, which is a big thing for me. The smiley boy turned up but there were no mats available so he waited around for a while but eventually had to give up. 

On the way home, we went to Pets at Home to get sawdust for Hamilton, but I got slightly sidetracked by a really fluffy bunny that I just fell in love with. I was very sad to leave it. We also went to Boots for some foot cream, and finally M&S for juice and dinner, although we wandered around feeling like we were the worst because we just couldn’t decide what to eat because there was nothing we wanted. Good old fishcakes. 

 

The 17th of May.

Things I have missed: my bed and my coffee machine. Being able to drink as much as I want, when I want is such a joy. I had a really good sleep, then this morning I watched Sunday Brunch and wrote up my blog posts. I’m a little bit sad it’s all over but that’s always how it is. I talked to Christine on the phone because Mommy still has no voice (it’s a mystery), then Grandma came round after church.

I had a hairwash, then it was Sunday lunch (involving many vegetables) and since then I have been making up Rufus – I just need to finish his name. We’ve also watched several things in the TiVo box – a fair bit has built up while we’ve been away. I’m going to be glad to go to the chiro tomorrow as my back feels dodgy in multiple places, then it’s gym time. My jeans are a little tight after too much food and very little exercise.

The 18th of May.

Back to the old routine. I had a lovely sleep, got up at quarter past nine and spent the morning waiting for a break in the pissing rain so we could go out to Boots for the toothpaste and handcream, plus crumpets from M&S.

After lunch, I had a chiro appointment which was painful but necessary. My left lower back and right shoulder needed work, then I went straight to the gym. I dropped off my Anthony Nolan leaflets which I am hoping will all disappear quickly. There wasn’t anyone particularly entertaining there today, just mini Joey Essex. I am quite pooped now.

Mommy still has no voice. I don’t like it when she’s poorly, it makes me irrationally worried. I give her lots of snuggles and she frets about giving me whatever it is she’s got, but if I’m going to get it, it’ll happen no matter what.

My story in.That’s Life! came out today. More followers! More donors! (By the way, I’m not looking for a boyfriend.)

The 11th of July.

Oh Jesus I am so tired. If we didn’t have to be out by ten tomorrow morning I would have lorazepam tonight. My legs also absolutely kill from the amount of walking I’ve done this week – yes I’ve been independent, but it’s come at a price.

I got a lovely message from Joanna Brighton who I used to go to Brownies with, and she has managed to wangle a delightful breakfast and viewing experience at Duck & Waffle for me and Mommy for whenever we want and I’m super-excited, just need to decide when we go!

I had breakfast of American pancakes with bacon and maple syrup at Hang Ten this morning, overlooking  the harbour and being terrible at the crossword in the paper. A small boy was desperate to play Jenga, but compromised with his parents’ suggestion of Connect 4. Then I decided I would make an attempt at health for once this week so went to Elixir and had a Side of Kale which contained kale, parsnip, apple, mint and lime.

Then Espressini time – my last visit! Just one flat white today, but I also bought some of their Knock Out blend to take home. I have loved going there this week – Rupert is lovely and I wish they were in Birmingham! Luckily, Faculty Coffee have just bought some Sweet Shop espresso which is the other blend I’ve had all week.

I met up with Mommy and Daddy and we went to Dolly’s for lunch where I had a cucumber and cream cheese sandwich which was perfect for the really hot weather today.

I did a bit more walking around, trying to find a card for Elle and Ben unsuccessfully and had some orange and mascarpone ice cream, then got Mommy and Daddy to accompany me back to the flat as they’d finished and I needed moral support to get back up the hill.

Since we returned, I have flooped.

The 12th of July.

Home again. Inevitably. But it means my bed, my memory foam pillows, my duvet, and my coffee in the morning.

I got up at half seven and made sure all my stuff was ready to be packed. I had my breakfast, then had my final wander down to get papers for me and Daddy, and a flat white from Picnic (it’s closer than Espressini and my legs are just agony now).

We set off before ten, but it took us until lunchtime to get to Exeter because there had been an accident where two cars had gone into a ditch. which was unfortunate. So we went to the Exploding Bakery on recommendation of Rupert, but they hadn’t much lunch stuff left, so afterwards we went to Boston Tea Party down the road where I got a sandwich and an orange juice, then we carried on our drive!

We stopped once more at Gloucester Farm Shop and Services which is practically a destination in itself! So much to buy and eat, although I didn’t buy any of the amazing looking cake because I knew it would make me uncomfortable and burpy which I did not want. However, I did buy some coffee, some soup, some chocolate, a mug and a necklace.

After about another hour of driving, we were home! Have unpacked and got my Stack magazine in the post and the CD with the PDF of my notes from BCH on! I’m really excited to look at them.

Tonight is lorazepam because I don’t need tomorrow and on Monday I need to be up early to have breakfast before I have to be nil by mouth.

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Last morning view over the harbour with coffee.

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American pancakes with bacon and maple syrup.

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Vague attempt at fruits and vegetables: kale, parnsip, apple, mint, lime.

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Hebe, the dog in the pearl necklace.

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Orange and mascarpone ice cream.

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Monmouth coffee at Exploding Bakery.

IMG_0067_2 RAINBOW PASTA!