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The 12th of March. 

I had a minor breakdown last night. I got very sad and scared about my current state, and had to be careful not to let the tears start flowing because that would have made everything worse. Infections can cause permanent damage, and I am really, really worried that I will not return to the way I was in November, which is the last time I remember feeling relatively good. If I continue to struggle so much every time I move, my life as I know it will change forever, again. I want to still be able to walk around my house feeling okay, able to go into The Glee and climb the stairs without being so scarily out of breath that I am frozen in my seat because even thinking about anything else seems to make it harder. If I have to keep using oxygen at home then we are going to have to stop fostering kittens, because they will play with and chew up the tubing. Then, if I can’t foster, I certainly don’t want to be in charge of homing anymore because it would be torture. 

Basically, if I do not recover to a satisfactory degree, I do not want to live like that. But I don’t want to die. And I don’t know where that leaves me. I will talk to the doctors tomorrow morning, find out if we’ve grown anything specific yet, and if they think there will be any long-term effects from this. I suspect it will take a lung function test in a couple of months to know for definite, because it could take a good 6-8 weeks to really get over this. And I hate waiting. 

I had a nice break today. My only mero dose was at 2, and the doctors had said that if I wanted to go out between doses that was fine, so I asked Daddy to come and pick me up, then we went home where I had a boiled egg and soldiers for lunch, and Mommy washed my hair. It has needed doing for at least a week, so it is nice for it to feel soft and fluffy again. 

Mommy and I came back at two, when I had my mero, and the nurse was very keen to start weaning me off the oxygen again, despite the test the other day. I agreed to swap to the low flow meter, so we can bring it down in smaller increments. Started at 0.8 litres and that was okay, then at six I came down to 0.5. I don’t feel very comfortable, but my sats are 99/100, so I’m okay, and I’m going to persevere. When I started on one litre, I felt like this, and it got better, so I’ll try. I’ll still have the small cylinder on 1 litre when I move because I will definitely need the extra then. 

While I was at home, Mommy made cinnamon swirls! We are so basic – she happened to see cinnamon swirl dough in a tin, which is literally a can of dough that is about five inches long? You open the can, and slice up the length of dough, then bake and add some icing! I haven’t had one yet though – we have brought them to hospital and I am going to have one with Dean tomorrow as he’s coming in for some chemo and is going to come see me beforehand. He is also an enormous cinnamon bun fan so it is only right that I share. 

The 13th of March. 

I had a very quiet but productive morning, and a very busy and fun afternoon. It’s been pretty nice. 

I decided I should really update my blog, because I’d been putting it off until I could be bothered to type up what I wrote for Mommy’s birthday surprise day, but it had really been too long of a hiatus for me to carry on procrastinating. There wasn’t actually as much to write up as I thought, so it wasn’t too intensive. Uploading the photos took a little while because of the WiFi, but one can’t expect miracles. I have been writing my journal updates in the Notes on my phone since I was admitted, because it hurt my arm too much to physically write when I first had the chest drain, so I have just carried on since then. Plus it made it quicker when I came to actually do the blog posts. I still have to write them into my diary but that can wait. 

With six posts to do, that took pretty much my entire morning. A different doctor is on the ward this week, Dr. Khan, but he hadn’t got much news – still nothing specific has grown, the pneumonia test that they sent off to Heartlands hasn’t come back yet but apparently it sounds like it could be that from my symptoms (I really don’t know anymore), and they would take some more bloods today to see what my CRP is doing. I’ve checked but they’re not back yet. 

Dean was planning to come and see me at midday after he’d been admitted for chemo, but things were hectic on YPU so he was delayed. That was fine, I just sat and did some crocheting until Vicky arrived at half past two with coffee and hugs. I spent a lot of time explaining what has been going on because she only had my instagram to go on, and we were amused by the doctor coming to take my blood and being surprised by us both knowing so much medical language and being so aware of how this all works. It happens when it’s been your life for so long!

Dean appeared at my window just after half past three and couldn’t stay very long as he had to go back to start his chemo, but I gave him a swirl and he gave us both copies of the magazine he has just launched (it’s called Hiskind and yes he has launched a magazine while having treatment for cancer he’s fucking amazing). We had a little bit of chat but he’s going to come back tomorrow because he’s only on fluids during the day. 

Vicky left about five, and Mommy had arrived by then. Oh I forgot, I was also dropped in on by Philippa and Kirsty while both Dean and Vicky were here, so I have been quite the social butterfly! 

I am doing this as University Challenge has started and hearing the voice of Monkman made me sit up with excitement. I think he is even better than the guy who wore the leather vest. 

The 11th of March. 

Monica can definitely jump. This morning I saw her leap up onto the high green chair, then the bureau behind it, and this afternoon she came up onto my lap without me having to lift her. Progress!

We had a trip into town this afternoon because Mommy needed to take a load of stuff back to M&S, and I needed some new pyjama bottoms after I discovered last night the ones I’ve been wearing have a fairly large hole in the crotch. Not a good look. I saw some in the Gap Body range online but they had none of it in the shop, then I found some I liked in Topshop but they only had them in a 12 or 16 which is of no use to me. 

I whizzed over to the Topshop in Selfridges, being grateful to the man who held the door open for me because both disabled doors were roped off, but they had no pyjamas at all. I fell in love with some super soft grey Paige jeans, then found out they were £290, so I decided to put them down. I also saw a lovely Easter egg that’s ever so chic, sprayed grey, but it’s £30, and yes it might be very grown up, but you’re still going to eat it and you might as well have bought a Mini Eggs one. 

On yes, and Christine’s got us tickets to go and see Ian McKellen and Patrick Stewart in No Man’s Land for her birthday in October! So excited

The 12th of March. 

I’m writing this on Sunday morning because last night I was too unhappy. To start off with the news that the government want to cut PIP to pay for tax breaks, going along with the news about the £30 a week cut to the WRAG ESA people, it’s a terrible time to be disabled. Plus I wasted my day waiting to hear from someone to confirm that we were going to hang out, but she never did. Couple that with being stood up earlier in the week, I feel like crap. It’s not difficult to start feeling worthless when people treat you like shit all the time, especially when the gremlin of depression is just waiting to spread his arms out across your brain and colour every thought. 

I’ve spent most of my day hiding out in the back room, feeling sad and afraid for my future. PIP has barely been established but they’ve already decided it isn’t working, so people will start being reassessed in January next year. Maybe I’ll be deemed sick enough to keep what I get, maybe not, maybe I’ll have to appeal. The removal of points for aids they “would expect people to have in their homes already” is baffling – what is expected? Does Justin Tomlinson have a stool that allows him to shower, or a frame around his toilet? Does he live in a body he can’t rely on, waiting for the day the germs crawl back up his intestines the wrong way and he’s suddenly back in hospital in more pain than can be described with words? The NHS is being dismantled, contracts up for any private company to bid for who are only accountable to their shareholders, not the people dying in their facilities, and the government have some weird logic that the competition between them offers better service. There’s no such thing as competition when we have no choice about where we go to try to stay alive. I’m not sure it’ll be there when I need it in the future. I shouldn’t be worrying about how I’m going to survive. But we all are. That’s the “one nation” the Conservatives are driving towards. United by fear. 

The 7th of May.

Ahhh nearly holiday time. I had a decent night, and this morning was spent sorting out stuff to take away. I’ve done most of it, just got to do the remaining bits in the morning that I still need. I’ve got all the wool I want to take and books etc.i just want to get there, to see the sea.

This afternoon, I had a shorter gym session, just to fit it in before we go away. The sweaty, smelly one was beside me for a short period which was upsetting. I talked to Neil (the manager) about bringing in some Anthony Nolan and Delete Blood Cancer leaflets and he is very happy for me to do that which is excellent.

I have all the stuff for London printed off, so there isn’t much left to do in that front. I am so nervous about the election results tomorrow. Not the Tories, please not the Tories.

The 8th of May.

I went to bed after the exit poll results came out. They predicted the Conservatives would win a majority, so I thought I’d better have some Zopiclone to override my sense of fear. It worked, but I woke up to the nightmare of it having happened. A strictly Tory government. I am devastated and I am terrified. They have been so sly about dodging questions about their welfare cuts. The most vulnerable in society are going to suffer the worst of this and I just feel so afraid.

We’ve spent the day driving down to Lyme, a place I need to be now more than ever. Spend a week relaxing, eating all the foods and working out how I’m going to deal with whatever the bastards dole out (or take away).

This is literally the worst thing that could have happened.