Archives For January 2017

The 29th of January. 

My arm has not gone down at all. I think we’ll be phoning the booking co-ordinator in the morning, not to actually arrange something, but she might be able to help us work out how to proceed. What’s ridiculous is that I will probably be able to get this surgery relatively easily, but if I had an aneurysm or something, it would be a lot harder to pin down. 

This morning, I stayed in my pyjamas and blogged. I had Shreddies for breakfast for the first time since my mouth flared up, and they’re not as good as I remember. Might have to rethink my choice of morning meal. 

Most of the day, I’ve wanted to just retreat from the world because what Trump has started is so bad already, and I am sickened that there are people who think he is right. Disgusted by the actions of our unelected Prime Minister. The only heartening thing is the amount of people protesting, who refuse to submit. I hope he does come for a state visit, so he has to come to a city to a Muslim is the mayor and see the thousands of people who will not stand for his new brand of fascism. 

The 30th of January. 

No arm progress. I made some phone calls but by the time I got the number of the woman I need to speak to, she had gone home, so I have left her a message. I’m having a minor panic because my jeans feel tighter around my right leg today and I can’t tell if I’ve gained weight or if my leg has swollen up. I can’t use the scales to check because they can’t be relied upon while my arm is the way it is. Ugh.

I had a mini Cats Protection meeting with the homing team this morning to discuss some creases that need to be ironed out. It was meant to be just a brief chat, but turned into an hour and a half discussion. We did at least make some decisions and I’ve got one job to do but it’s not urgent. 

This afternoon, I did some CP adoption admin, and Mommy and I watched the first episode of Case, a new Scandi-Noir on Channel 4 that has already drawn us in. My copy of The Good Immigrant arrived, which I bought with my Amazon voucher that I got for participating in the Anthony Nolan group on Thursday. Really looking forward to getting into it. Also I am greatly enjoying the photos from the Birmingham anti-Trump protest – wish I could be there but it’s not advisable. I cannot afford to get sick.

The 27th of January.

Long days and late nights do not suit me. It took me ages to go to sleep because I was so cold, so I’ve been absolutely exhausted today. 

I got up at half past nine, very reluctantly, and stayed in my pyjamas all morning. I didn’t have the energy to engage with This Morning so I let BBC 2 burble in the background while I wrote about yesterday. That took a long time because I was just feeling useless and wretched, and that is why I have not typed it up yet. 

After lunch, we changed the dressing on my arm (small puncture wound, very little to report) and I put on some warm clothes. My arm has not even started to deflate yet and even my big jumpers are getting a bit snug. I had a bit of a lie down but lacking the capability to nap in the day, it doesn’t really help, so I came back downstairs and have just been a big floop. 

I answered some Cats Protection emails and spoke to Shaki, but I can’t even remember what about now. I might take some Zopiclone tonight and try to have a big sleep. Feel like garbage. 

The 28th of January. 

A sleep has helped. Not back to normal yet but getting there. Another early night will be required. 

Having had Zopiclone, I can barely remember what I’ve done today. I know I wrote up my blog post about London and my venoplasty (update: still no improvement, fairly sure it’s actually getting worse), I went upstairs to unpack my new hairdryer, but other than that, I’m not really sure how I managed to while away the day. 

Definitely no watching of any tv that had to be paid attention to, nor any reading of books. I finished The Man in the High Castle on Wednesday, and I’ve got The Invention of Numbers out to read next but I haven’t started it yet. 

I got in touch with the gym to pause membership again and they’ve done it for five months, although I can resume it at any time. Frankly I’ve got no idea when I’ll be fit for any kind of activity; I can barely walk from room to room without getting distressingly breathless.

New body please. 

The 25th of January.

Venogram day!

I was up at six, and having got dressed, I drank as much water as was humanly possible before my cut-off at seven. We arrived at ambulatory care at about quarter to eight, and we sat around for forty five minutes reading our books before the nurse came to start going through the checklist. It became apparent that the doctors wanted my potassium checking because it was high yesterday, but it was fine today. At half past nine, I was told to gown up because they’d be coming to get me soon, but then they actually didn’t arrive for two hours. There had been an emergency in angio so I was not angry, just bored and hungry. So hungry.

The nurse in imaging clerked me in (the amount of times I have repeated my date of birth, address and the fact that I am NOT PREGNANT today), then Andrew and the doctor who was working with him came to see me, and we talked through the plan. Andrew had the same theory as me, and the intention for today was to do the venogram and if we could do the venoplasty then he would.

I got taken into the angio suite, and everyone introduced themselves while I and the room got prepped. I got to be in the Who which is fun – normally I’m asleep for that part. While the doctor shoved the wire up inside my vein, the nurse on my other side stroked my hand and tried to distract me by talking about bees. I love that they do that kind of thing. We both knew what she was doing, but it is like a quiet contract we both entered into. They took some pictures of inside my arm, and it was found that I had a narrowing in the subclavian vein (not the superior vena cava like last time). I hadn’t had a massive amount of gadolinium (the dye they have to use because I’m allergic to the CT contrast dye they would normally use) yet so they gave me some fentanyl and midazolam, then I had a lovely nap while they inflated my vein. Hopefully that should do the trick, but if it doesn’t go down in a couple of weeks, I’ll have to go back to have something more invasive and permanent, like a stent. Let’s hope not.

The 26th of January.

Ooh I am so tired. Very long day. I’d not long finished my breakfast when my phone rang – it was a journalist called Christine who had got in touch with me via Anthony Nolan and wanted to do a kind of basic interview before she goes pitching the story to different publications. Sounds like it’s going to somewhere like Woman and Home or Woman’s Own right now.

When I’d finished talking to her, there was just time for me to eat some lunch and sort out my bag before I had to go to the station. I got taken to my train, but before we set off, there was an announcement to say there had been a fatality, so we were being diverted via Stafford, so would be skipping some stations. We eventually arrived in London forty five minutes late.

I had planned on going and doing some shopping but that seemed rather pointless and expensive considering the cost of cabs involved and the time I’d get to spend in the shops, so I went to Origin Coffee and had a flat white and a brown sugar cookie while looking over the NHS documents about second transplants. I get more angry every time I read them.

I sat and watched people go by for nearly an hour, then I needed to get a cab to go and meet Lauren and Amy for dinner. I thought it would be easiest to get one from Euston, so I drove back down the road to the station. I also had to pee and the disabled toilets at Euston are all out of service so someone had to let me in the baby change toilet instead, but at least it meant I didn’t have to pay!

I was able to pick up a taxi without too much difficulty, and he took me to The Diner in Camden. They found a ramp so I could get inside, then I got settled in a booth and had another coffee while I waited. Lauren was a bit late because the traffic was awful, but it was fine because there was a couple with two cute little boys nearby who were very entertaining.

When she did arrive, she gave me my birthday present of the Ruby Tandoh book, so I can make lots of tasty foods. Speaking of tasty foods, she ordered a vegan burrito and I got some pancakes with bacon to make up for the lack of pancakes on my birthday. Amy arrived mid-meal (she did say we could order without her), and we got to just have a nice dinner and talk about normal things, like Lauren’s move and an exciting project which Amy has been put forward for. I got my arms out, and Lauren found the size difference absolutely hilarious. She is one of the few people allowed to laugh. I’m actually fairly sure it’s got worse since yesterday but I just have to watch it.

I kind of had to leave in a rush, hauling my chair out of the door just in time to get into the Hailo cab. The driver was wearing shorts, which wasn’t then great for him when we got stuck outside the Anthony Nolan office gates and he stood around ringing bells until I got through to someone on the phone who let me in.

I was the first one of our group to turn up, followed by Jack, who is a supporter running the marathon (again), and Hayley and Jess who are both heavily involved with Marrow. We got started very promptly at eight, in a session facilitated by Ammeline, who does not work for Anthony Nolan. We began with an exercise saying what kind of animal we would be – I decided I am a panda because although everything seems to keep telling them to die, they just refuse to and I think that’s like me. Plus I’m cute. Then we got on to the subject of charity and Anthony Nolan specifically, what they do well and what they could do better. We were kind of biased because we love them, but we were able to come up withe some things.

I had to leave before we officially finished, because I needed to get back to Euston, although I don’t think it was going to go on too much longer. The car that arrived to take me there was a Mercedes, non-accessible, so I had to collapse the chair and put it up again at the other end, which was a disaster for breathing. It took ages for me to get back to normal.

I bought a hot chocolate and went to the assistance office, where the man told me to go down to the platform where his colleague would meet me. He did not appear, and after ten minutes of waiting in the freezing cold, I rang the office back and he was confused as apparently he’d rung the man “ages ago”. When he finally ambled up in his buggy, he was then pretty incompetent at putting the ramp on the train so having got up to my seat, I did not thank him.

We got moving, and I was desperate to sleep. However, I cannot sleep in a place that isn’t my bed and especially when I’m not even poorly, and I am paranoid about missing my stop. No sleeping was going to happen until I got home. Unfortunately, this train got delayed too because an engineering one in front of us had a problem so we got stuck outside Milton Keynes for forty five minutes. So dull. We made up a little bit of time, but still didn’t get to New Street until one. Tired, cold, in pain.

The 23rd of January. 

Much better sleep last night. Think it was helped by having my dressing gown available as another layer. I’m now sleeping in a jumper and pyjama bottoms tucked into thermal socks, under the winter duvet, a blanket and a thick dressing gown. I am the coldest person in the world. 

This morning I did the big birthday blog post, and fitted in two Cats Protection calls before lunch. I also printed off some stuff I want to look over before my Anthony Nolan thing on Thursday, all about the decision to withdraw the funding.

After lunch, I went upstairs and spent a very productive hour putting together the wooden Little My and sorting out my sock drawer. I have too many that I simply do not wear and had forgotten I have, so they’re all going. Yet my drawer doesn’t seem any less full. 

Becky came round with some more birthday flowers for me – she is better than was described, although she was still careful not to touch or breathe on me, which I was grateful for. 

I think another early night tonight – Women’s Hospital in the morning. 

The 24th of January. 

Bleah, early start. Not as early as tomorrow though – we will be leaving the house at 7, so today will seem like a lie-in. Still, I’ll be having some fun drugs that may induce a nap. 

I began at the Women’s Hospital at 10, seeing Dr. Robinson in the menopause clinic. Having read my book for half an hour, I was called in by Elaine, her clinical nurse specialist, and saw her instead. There was nothing I really needed to see Dr. Robinson about specifically so I just gave her an update on my general condition, we talked about my vaginal surgery, and I’ll just carry on with my current management until I see her again in a year. 

Had to make a quick visit to haematology clinic to have my clotting checked for tomorrow, and Dr. Ferguson had asked that I get a tacrolimus level done so I had them look at that too. 

I had to be at the dental hospital for half one, so there was no point going home to come back. Instead, we went into town where I got Mommy and Daddy’s anniversary card and some thank you cards, then we went to Pret for lunch. I got a cheese, ham and mustard toastie which was WAY TOO MUSTARDY so I had my coffee and cookie instead. Stupid pathetic mouth. 

Mrs. Richards wasn’t in today, but I saw two of her team and they were both happy with my mouth is, so no injections today. 

The 21st & 22nd; Birthday!

January 23, 2017 — 4 Comments

The 21st of January. 

Birthday! Had to get up super early which I didn’t love but it was for a good reason. I had a pain au chocolat for breakfast, then opened some of my presents. I got a box of macarons from Macarons & More from Grandma, a book token and a big journal from the Hudsons, a cheque from Taid, and some Moomin paraphernalia from Mommy and Daddy – a t-shirt, a notepad and pencil, and a wooden Little My that I need to assemble.

Our train to London was at 10:10, so we set off shortly after breakfast, and we were taken to the train by a woman with a very laissez-faire attitude which I did not care for. I also didn’t like being in coach A because it means I can’t really talk to the people I’m travelling with, but there was at least a fun baby who smiled at me when I made faces at her. 

We didn’t have time to wait for the Euston team to turn up, so got the chair off the train and went to get a cab to the South Bank, where we met up with Christine. We then went on a twenty minute trek in the cold to Where the Pancakes Are, but their misleading website said they would have some free tables for walk-ins, but there was nothing, so I told the woman she had ruined my birthday and left feeling very disappointed. 

Very nearby was a Caravan restaurant where they had many tasty dishes available and nice coffee, so then I was greatly cheered. I had a flat white, then smoked salmon and scrambled eggs on toast with a mimosa. Christine gave me my presents which were two Harrods cronuts (salted caramel and Speculoos and the zebra one), then Daddy had a pudding and I had more coffee. 

We got a taxi back to the South Bank because I couldn’t bear to get that cold again, then we had an hour to kill in the Royal Festival Hall before our Moomins exhibition tour. I went to the shop and bought a little stuffed Moomin and a bowl. 

The tour was lots of fun and very informative – it’s narrated by Sandi Toksvig, along with the tour guide, which was a lovely surprise, and there were lots of original illustrations and stuff that I would never have seen otherwise. I also really liked that they didn’t just gloss over the fact that she was gay and are teaching the children going on this tour that it’s okay and not something to be ashamed of. I think we need to be reminding kids that whatever they are is okay at the moment. The only bad bit was that it was not easy in the wheelchair – we actually had to collapse it and I did a lot of crouching in each room. It would be fine in a manual one with big wheels but the spaces are too small and the floor too uneven for anything else. We coped, but other people might not. The tour guide was very helpful and apologetic, and she promised to feed it back. 

Our next stop was Konditor & Cook to pick up my birthday cake, then we headed to the BFI for hot beverages and a rest before we had to go back to Euston. I had a hot chocolate, and did a lot of coughing which worried me but I think it was just because of the temperature change between there and outside. 

We saw many people who’d been to the Women’s March, which I would have loved to have gone to, but if I had, I would have definitely got ill. It was so cold today, I couldn’t have coped, even in a mass of people. Wonderful, but not sensible for me. 

When it was time, we said goodbye to Christine, then back to Euston. I got some Pom Bears and New Scientist, and when we got home, it was time for cake!

The 22nd of January. 

So tired today. I had a really bad night, not getting to sleep until past one, which is way too late for me. I got up at half past nine, put on some very warm clothes and settled in to spend my morning writing about yesterday. 

This afternoon, I was about to start writing the post I would have done yesterday, but then Alison came over with my birthday presents (more wool and flowers) and there was some catching up to do. Becky is full of lurgy so can’t come round herself, so we got all her news by proxy. It sounds like the cold Grandma’s got and I do not want either of their germs. 

We put the flowers she brought me in a vase, and I was able to finish my writing, which didn’t take long. Tomorrow won’t be so quick as there was a lot to say about my birthday. Then I got to work on otter number 2. I’ve made everything except his ears and snout, so I’ll get him finished this evening. When I’m done, it’ll be an early night. I need a big sleep. 

The 19th of January. 

Another day of little activity. This morning I wrote up a post, then got somewhat engrossed in a game of Rollercoaster Tycoon. It’s back as an iPad game and I forgot how easy it is to get involved. Yeah, it’s no Theme Park World, but it’ll do. 

I spent my afternoon at Black Sheep. Cut and colour time, change for my birthday. The cut was just a trim, nothing drastic, but the colour has gone from white to pink and people; I think they are my favourite colours to be. Had a nice chat with James about his new business venture and that’s going very well which doesn’t surprise me at all. I got some more of The Man in the High Castle read, although I need to not leave it so long between reads as I have to keep reminding myself what’s happened. 

I got home about half past four, and we watched last night’s episode of Conviction, with which we are now finally up to date. Not especially productive but one can’t be all the time. 

Trump’s inauguration tomorrow. Think I might hide under my duvet until Saturday. 

The 20th of January. 

Trying to pretend today didn’t happen. Ignoring it. Just wishing for tomorrow, when it’s my birthday and hundreds of thousands of people march against a man who represents everything abhorrent in the world. 

I spent a lot of my day feeling quite uncomfortable and sad. I took a lot of selfies to document my new hair when the light was good, and blocked out current events by listening to podcasts. 

I thought I should at least do something constructive, so I’ve started crocheting a very cute pair of otters which will cheer me up when they’re done. 

There’s little else to say. Can today be finished now please?

The 17th of January. 

I have a venogram appointment! I checked on myhealth this morning, and I am booked in for the 25th at 9am. No letter yet, that will probably be tomorrow, and will include more detail. Looking back at previous venograms, there have been occasions when the venoplasty’s been done immediately, and when I’ve had to go back and have it another day. Fingers crossed it’s the former but I have no clue. 

This morning, I wrote up a post and painted my nails while watching Theresa May’s Brexit speech. It was not particularly illuminating, apart from making it obvious that if we don’t get what she wants, we are quite screwed. People keep saying “We haven’t had the Brexit crash that was predicted” like it’s fine but they don’t seem to have realised that we haven’t left yet.

Mommy has been out most of the day, taking Grandma to a funeral, coming home, reading a letter, and having to go back to Grandma’s to tell her that this letter said that her cousin has died. Not a great day for her. 

I watched the final three episodes of A Series of Unfortunate Events and crocheted. I had started some pyjamas for the doll I made ages ago, so now she has the trousers and I’m working on the shirt. 

Phoned up several potential adopters to have the standard conversation, had to explain that we actually have practically no cats/kittens at the moment, but they are willing to wait. 

The 18th of January.

Today has seemed to go by ever so quickly. I looked at the clock and suddenly it was half past three. Where did the time go?

This morning, I was able to have orange juice with my breakfast for the first time since before Christmas. Think my mouth might be okay to eat fun things on my birthday, maybe even have some champagne! Such excitement. I have ordered a mini Curly Wurly cake for us to pick up on Saturday and I’ve been trying to decide what I’m going to wear. Thankfully we’re not going anywhere fancy so I don’t have to worry about a dress code, but I’d like to look reasonable and that’s tricky when one of your arms is massive. I’m not sure whether my leather jacket will fit so we’ll take the furry lining out of my park and then I think it will be big enough to accommodate the enormo-arm. 

After lunch (during which I had an apple, another thing I haven’t had for ages because it was too pointy), I had a Cats Protection call, then I made the pyjama top to go with the bottoms. I now remember why I’d stopped doing stuff from that book – it has mistakes as it’s a translation. Bah. I also started a new series on Netflix called Glitch. It’s like The Returned, but Australian, and they all crawled out of their graves at the same time not knowing they were dead. I’ll see how it goes. 

Hair change tomorrow. What colour to go?