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The 5th of April.

Marginally better. My sleep was not as bad, but it still wasn’t good. However, my sats got up to 100% on just 1 litre of oxygen today, so I have been able to do some stuff without having to wear it at all. Spike has been allowed out of the cage to roam freely unsupervised, so I went to see him a couple of times without taking my little cylinder with me. They were not especially active trips – literally walked from living room to back room and sat on the floor. He just comes straight over for petting and purring. That is pretty much all he wants. That, and to be fed. He sheds so much though. My jumper is so fluffy. 

I wrote up a blog post, and spoke to the eye consultant’s secretary about sorting out another appointment, who said she’d talk to the booking coordinator. Hopefully a letter will materialise soon. 

I listened to episode 6 of S-Town, which was upsettingly relatable, particularly the line “You learn to live without.” Because I have. I obviously do not have the sort of love life that most able-bodied people my age do, and I don’t really think about it anymore. The man on the podcast said he’d been celibate for six years and I suppose I was surprised because that didn’t seem like such a long time for me. It’s been four years for me. I have stopped trying to connect with people, people who do not even see me. I have learned to live without. 

The 6th of April. 

I don’t know what is going on with my sleep pattern at the moment – last night was fucking terrible. Just before I woke, I was dreaming my bedroom was full of brightly coloured bugs and I was not a fan. 

Despite the ghastly night, my sats have been reasonable today – at one point this afternoon, they were 97% on air. It is a mystery to me. I’m supposed to see Dr. Thompson later this month, so I’ll ask him. He’ll probably just say something like “They vary all the time, you just don’t notice because you didn’t have a sats monitor before” and I don’t think that’s true but I won’t be able to prove otherwise. 

Another day of not much to report, otherwise. This morning we yelled at the tv a lot because some people seem to think that the law requiring children to attend school every day unless they are ill or there are exceptional circumstances is somehow bad and “being told how to bring up their kids”. It you’ve chosen to educate your child in the school system, then you should make them go. I don’t see how that’s unreasonable. 

I also got to tell off some Jehovah’s Witnesses. They came to the door and tried to give me some sort of leaflet. When I saw the logo, I gave it back to them and said “I’m sorry, I can’t take this because when I had leukaemia ten years ago, you would have let me die.” And I slammed the door in their faces. It was fun. 

The 3rd of April. 

I am so tired. Not just physically tired, but mentally, I am exhausted. I had Zopiclone last night which worked, but I don’t know how much good it did. 

Really, I feel like I am waiting for each day of the next three weeks to be over. That’s when my venoplasty is, but it by no means will fix everything. Well, it should fix my arm, but I’ve lost faith in its efficacy. I don’t know. Recovering from the pneumonia is really frustrating because improvements will be so incremental that I won’t even notice I’m getting better. I’m just hoping with every part of me that I’m not still needing oxygen at Machynlleth. Then there’s my back pain to deal with – I have an appointment at the GP to sort out starting the patches, which I really hope work because it hurts so much at the moment, I can’t even force myself to sit up straight. Then there’s my eye, no longer really causing me pain, but I can’t see out of it effectively – everything on that side is a blur. I haven’t got my follow-up appointment at the QE yet from when I saw the eye man in February so I need to ring up the consultant’s secretary about that. And let’s not forget the gynae issues that take up a chunk of each day too. 

I have nothing in the diary to look forward to in the next few weeks either. I’m worried the heavy cloud will descend once more. 

The 4th of April. 

Slightly improved today. Not physically, but mentally. I had a terrible sleep, tossing and turning, so my plans of extra sleep are not going brilliantly. 

Bad sleep has resulted in bad breathing, and even with 3 litres of oxygen, showering was quite the ordeal. It was not even that difficult in hospital, although that time I was not particularly active. Anyway, not an especially productive morning. Essentially, I got dressed. 

This afternoon, I let Spike out for a little explore before his lunch, and we had a very pleasant time. I rubbed his belly lots and tried to take pictures, but he doesn’t stay still long enough. Mommy took Grandma out into Sutton, and I sat and finished crocheting the most recent doily while listening to episodes 4 and 5 of S-Town. It is such a sad, sad story, for everybody involved – I can’t think of a single person who is having what might be called a relatively easy life. And it’s so complicated, and I doubt it will all be resolved in the next two episodes. Much like the last two books I have read, with their unsatisfying endings. I need something wrapped up neatly in a box.

The 1st of April. 

I have a kitty! His name is Spike (although we think he looks like a Samuel), he is six months old-ish, and he is a very pretty tabby. Shaki brought him round this afternoon and he’s going to be in the cage for a couple of days until he gets used to us, but he’s been happy for me to stroke him and he has done lots of purrs so I think he will settle in pretty quickly. 

I have not felt too bad after my outing last night, and this morning we went over to Kings Heath to get some cake from the Bake guys. I saw they’d made a chocolate churro bundt cake and I simply had to have some. I also got Brooklyn Blackout Baby Bundt, a cookie dough brownie and a creme egg brownie.

Back home, I ate lunch (including my slice of churro deliciousness), then waited for Shaki to arrive. When Spike was comfy in his bed, I explained a bit more (to Shaki, not Spike) about the pneumonia, and we talked about my current volunteering capacity. When she left, I stayed in the room so Spike didn’t feel abandoned and he was very happy to be petted and have his tummy tickled. Gonna have a new friend!

The 2nd of April. 

Really, ever so tired. Spent my morning in my dressing gown because I hadn’t got the energy to open my drawers and find clothes. When I did finally get dressed, it was hard to muster up the impetus to go back downstairs. Moving is such an effort. However, I did manage to go and see the new kitty a few times. He’s still skittish but as soon as the food comes out, so does he. I was even able to pick him up and we had a hug, but he got distracted by Daddy in the garden so I had to put him back in the cage before he escaped. But I gave him some more strokes so he knew he was a good boy. 

Thank god SyFy are doing Buffy marathons to celebrate twenty years because it has made for such a nostalgic soundtrack to my afternoon. I fondly remember watching it on BBC2 at 6 o’clock every weeknight with Christine, and being so mad when it moved to Sky. 

During the Buffy, there has been crochet. Recovery does not make for interesting reading. 

The 20th of March. 

Feeling slightly better today – I’m going to try going to sleep earlier and getting up a little bit later than I would otherwise. I think I’m going to need as much as reasonably possible for the next several weeks. 

This morning I put up a blog post, and remembered to print off the tickets for Jon Ronson tonight. We’re going to see him talk about psychopaths at The REP. It’s been a long time since I read The Psychopath Test so it’ll probably feel all brand new to me again. 

After lunch, Mommy went to see Grandma, and I had a mini Agents of S.H.I.E.L.D marathon while crocheting Lauren the angora bunny. Finished the head now and snipped all the loops so she’s going to look very furry. I’m not sure where I’ll place the eyes and nose amongst that fur.

When she returned, we watched the second and third episodes of The Replacement. That was bloody unsatisfactory. Not sure why they had to rush the ending so much and fill the last fifteen minutes with nonsense. Frustrating. 

Speaking of which, we tried ringing Tracy from interventional radiology today, but no answer. 

The 21st of March. 

An in-between sort of day. Went to bed late because of Jon Ronson, so I’m tired, but not to the point of needing oxygen. Just enough to not really be able to get a deep breath. 

This morning, we caught up on the episode of Broadchurch we missed last night (just throw a red-herring rapist into the mix) and saw a lot of news about Martin McGuiness. He is still the main news this evening, so nothing else can have happened today. 

Just after lunch, Jen came round with a bunch of flowers from Cats Protection which are very pretty. She couldn’t stay long, but she had time to show me the “physio” I should be doing, which involves putting my feet up, a hand on my forehead, and the other one clicking at people to bring me things. 

This afternoon, I’ve been catching up on more tv and crocheting all four bunny legs. Ears and tail left, and I think I’ll have just about enough wool. 

We finally managed to talk to Tracy this morning and she’s looking at early April for my second venoplasty. I know there isn’t much of March left but that still seems an eternity away. I’m wearing the compression garment but all it does is squeeze me down by a centimeter and hurt.

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 8th of February. 

I am so tired of spending every morning coughing, over and over, having to bring up crap from my lungs repeatedly. It takes hours to subside. I haven’t got an appointment for Andrew’s clinic next week yet, so tomorrow I’ll have to ring the lady I spoke to last week again. 

It’s been another rather nothing day. I have crocheted two coaster-type things, although they’re a bit big so are more like doilies. I am a grandma. 

We watched another episode of Case – it’s only on All 4 so we have to be proactive in watching it, otherwise we’ll forget and I do want to know what happens. I find it difficult to tell all the blonde Icelandic girls apart; they all look so similar. There’s another, similar drama starting soon called The Team so hopefully they’re different enough for us to keep them separate in our minds. 

Nothing else. Just want to be back to normal size. I’m doing a talk for some Marrow volunteers next week and it would be so nice if I didn’t have to wear an enormous jumper but I suspect I will. 

The 9th of February. 

So it seems 2017 is the year I become a pensioner, as I’ve made about five doilies in the past two days. They’re my new scarf – when I’m bored and have no larger project, make a coaster/doily. 

This morning, I made a purple coaster, and this afternoon, I did a larger, doily-type one while listening to 69 Love Songs by The Magnetic Fields. They have such a wealth of material, I wish I’d known about them back when they might have toured. 

I had several phone calls to the hospital, trying to make sure I was going to get an appointment for Andrew’s clinic next week. I talked to the lady from last week, but she had no paperwork about me, so then I spoke to his secretary who was able to sort it out very efficiently and I’ll be seeing him next week. Apparently the compression garment people have me on their list as needing one urgently but still no idea when that might progress. 

This evening I had another Cats Protection meeting, although this week’s was not as long and I have no jobs to do. I am good at being the host, providing biscuits and doing admin. 

The 4th of February. 

I do not like diuretics one bit. So much peeing. If this makes no difference to my arm in a couple of days I will be rather annoyed. More annoyed, I should say. I’d really like to wear jumpers that aren’t massive and coats that are actually warm. Sigh. 

Blog post this morning during Saturday Kitchen, then I had to be at Lyn’s house at twelve for another Cats Protection meeting. Part of it involved going down her garden, so I stayed in the house and made friends with her big black kitty. Very soft and floofy but also moulty, like Oscar was. 

It wasn’t a long one, but I was still quite hungry for my lunch when we got back. Then this afternoon, we have made Nigella’s quadruple chocolate loaf cake. It is a behemoth. 

Today is World Cancer Day, and I’ve been wearing my Anthony Nolan Unity Band. I can’t quite believe this year is ten years since I was diagnosed. I don’t know what I expected my life to be at this point – I suppose I thought I’d be fine, or dead. Certainly not this weird, in-between state, constantly breaking down in ever more creative ways. Sure, I’d like to be fine, but I don’t want to give up the good things in my life for that and I think I’d have to. I’m willing to pay this price. 

The 5th of February. 

If it’s not one thing it’s another. The arm is still exactly the same, and my back is really bad – the right side of my lower ribcage is super stiff, so deep breaths are a problem, standing and walking are even worse than usual. God I wish the bloody pain team would just give me an appointment so I could get a drug that works and doesn’t make me sick, unbearably itchy or incapable of breathing. 

Day largely spent in front of the television – Sunday Brunch and rugby, while I crocheted a sock. It’s just a practise, not going to be wearable, but if it works then I can do it again properly. 

This evening, I’ve been out at The Glee to see David O’Doherty. I planned on using the lift as my breathing is still worse than usual, but then I was told to ask inside the venue and they’d take me to it. Unfortunately, that kind of defeats the purpose because to get to the lift, I’d have to leave again to walk to the back door where the lift is, which makes me breathless anyway. So I climbed the stairs, and was taken to my seat which of course was as far from the door as possible. At this point, I was out of breath to the point where it scares me. I just have to sit and wait for it to get back to normal. 

The show was great, just what was required. Denise from Cats Protection was there with her husband and we were saying that we really needed some relief from the awful world. He definitely was that.