The 15th of November.

Oooh I am very tired this evening. I think it is a caffeine crash, after having two flat whites with Vicky this afternoon.

Quiet morning – wrote up a blog post, and used a different brand of dexamethasone eye drops (the ones that came from the GP instead of hospital) only to find that there is preservative in them and it was really bloody painful. This is why I don’t go to the GP about things.

After lunch, I met up with Vicky at 200 degrees in town for coffee, cake and chat. I pretty much had a massive moan about all the things wrong with my body – my eyes, my arm, my lungs, my gynaecological issues. Mostly minor things but they all add up. And she offloaded about shit she is dealing with, then we talked about nice things like hanging out with Joe last night and stuff we have been watching on Netflix (mainly Stranger Things). We also enjoyed a funny coincidence of a chap at the table next to us mentioning Joe, so I sort of interrupted (in a polite way) and it turned out he was Joe’s friend Paul who is fairly pivotal to the show! What a small world.

The 16th of November.

Assembly day.

This morning was quiet – finished crocheting the remaining parts of the current project while I watched the new episode of Riverdale. Washed my hair. I suppose that is all.

After lunch, I put together the first little fellow, then didn’t have time to do any more before Ann and Tom arrived to see the kittens again. We’ve been letting them out to run around so this time they scampered up and down the room, gamboling and fighting.

Once they’d left, I put some shoes on and we had to get going to Hallfield for an OHS committee meeting and the AGM. Roshan, the GP in the group, arrived at the same time as me, and we hovered outside, ringing the bell until we were let in. Then we hung around until the Richards and Aman came out of the Head’s office so we could start the meeting. Although, first Richard (the Head) wanted to show me how he’s redecorated – he has got some very comfortable Chesterfields! Probably not conducive to a meeting though.

Speaking of which, it was pretty short and sweet, and now I’m the vice-chairman. Yeah.

The 13th of November.

Sleep was not actually that bad, although I did wake up so cold, I had to drag my blanket over myself. I have the double thickness duvet on my bed now for winter, so hopefully tonight I’ll be toasty.

This morning, I went out with Mommy to do some shopping errands. First, we went to Aldi, because they have some decent crackers (Christmas, not Jacob’s) and are selling a cheap version of wool I like. Next, M&S for a pretzel and chewing gum (this was really just a bonus rather than a necessary trip), then we went to Boots so I could get a body brush to try to help my skin, circulation and lymphatic system.

After lunch, I have been sat with the crochet. My back hurts more than usual today – it’s like I’m having a delayed reaction to all the driving on Saturday. Every time I get up, I groan, like I am ancient. So I’ve sat watching The Blacklist, and just had to undo and redo an entire section of crochet because I wasn’t paying enough attention.

The 14th of November.

I forgot how heavy the double duvet is. Took me ages to get comfortable underneath the weight. It’s super warm though.

Today has not involved a great deal of excitement. This morning I used my new body brush thing and all the unsupported sitting made my back unbearably painful, so much so that I couldn’t finish moisturising afterwards, and I had to get Mommy to help do my legs. I’m not sure it’s ever been so bad that I couldn’t do what I needed to. Found out today that Dr. Antrobus has actually left (not ideal), but he had written my letter before he did, so it can get sent on to Dr. Blaney who can do the bloody steroid injections!

Afternoon was more of the usual – Bones, The Blacklist, crochet. Made another irritating mistake by being distracted. Nearly finished this project now – might get the last bits done tomorrow, but I’m seeing Vicky for sick person chats so we’ll see.

I am seeing Joe at The Glee tonight, which is going to be much fun. Distraction from life garbage.

The 11th of November.

A long day of much driving but a lovely afternoon at our destination.

We set out early as it’s a good three hours to Wimbledon, where Hilary and Jeremy live. I took the opportunity to give the new Taylor Swift album a listen on the way – I like it, but I think I need time to love it. I also listened to the song from the trailer for The Greatest Showman multiple times – that, I love.

We arrived just after twelve, to find Christine had got there not long before us. We had a quick sit down in the living room, but before long, lunch was ready, so we went through to the table in the kitchen. It was a perfect day for cottage pie, and Jeremy was very appreciative when he joined us from his morning on the river.

After we’d finished, Peter and Sophie appeared with the twins! I was given Grace, who remained asleep for the entire visit, waking only to yawn and fart. Such a chilled baby. Henry was passed around everyone, I think – he likes to wriggle and gets uncomfortable, and he becomes tetchy when he is too warm. When he started to cry, they’ve learned that soon it is food time, so it was time for them to go home.

We stayed until about five, talking about Christine and Tilly’s Morocco trip, our current kittens, and I found out that Jeremy’s cousin is a Duke. Just casually drop that into conversation. We drove pretty much straight home, bar a stop for petrol, and the kittens were ready to climb the walls.

The 12th of November.

Good and bad night. Good, because I had a Zopiclone, so I had a pretty deep, unbroken sleep. Bad, because I dreamed that I was in hospital, my cancer had come back, I thought it was getting better when in fact it had spread everywhere and everyone had been lying to me about it.

Not a brilliant start to my day. Equally then not helped by me putting my leggings on inside out. Nitwit. Once they were on the right way round, I spent my morning typing up two blog posts. The second one was hard – to write, to edit, to share. I don’t want to elicit any specific reaction, I’m just saying how I feel.

For lunch, we replicated Nigella’s brie and parma ham toastie (minus the figs, ugh), then this afternoon, I sat and crocheted while watching The Blacklist. Then Mommy returned from Grandma’s, and we’ve caught up with X Factor, Only Connect and Masterchef.

I am looking forward to bedtime, despite knowing that post-Zopiclone sleep is very hit and miss. I just want to curl up.

Since my appointment yesterday with Dr. Thompson, I’ve been feeling pretty depressed. I know that physically, since the pneumonia and collapsed lung, I have found it hard to do much more than walk a few metres without struggling for breath, but to now have it confirmed that there is no hope of recovery is hard to hear. I had just got used to one standard of disabled life, and now I have try to envision the rest of my life again in this new version. I am tired of grieving for lives I thought I’d have.

It’s difficult when I spent months this year so chained to oxygen, having to exist as a blatantly, visibly sick person, and I hated it. Truly, despised it, because the first impression I gave was one of illness, and my appearance inspired pity in strangers. I cannot bear the idea of living a pitiful life. The very opposite of every intention I ever had. And I know that the next rung down on the ladder of lung disease is one where I am constantly adorned with plastic tubing. That scares me because living when it was so much effort to even brush my teeth was almost intolerable, and I don’t know if I have the strength to fight through every exhausting moment being miserable. I had rather decided that when it became impossible to be happy the majority of the time, I would find a way to end it.

But in the past, even when I have felt darkest, most lost, I still wanted to be alive. Or at least, I didn’t want to not be alive. I didn’t want to miss things, and I didn’t want to be the cause of the agony of death that I’ve felt more than enough times for any normal lifespan. I know I am most likely to die first in my family, but for it to be self-inflicted would be crueller than is necessary.

I saw Murder on the Orient Express today. There is a notion in the story, something I have thought about before, when we lost Dean – that when one person dies, there is a ripple, an avalanche. Everyone around them dies too, at least a little. I can’t instigate that kind of pain, not on purpose. I think there will be moments in the future in which I don’t want to be alive, not right then. It has happened before. But there are also always things to come that bring me happiness. Maybe I can adjust to a different life. Again. I just think that while I am able, I ought to endeavour to enjoy the time I have, whatever way I have it. To try to improve the lives of people around me, and use my voice to champion the things that have kept me here thus far.

Even when everything seems merciless and wearisome, for as long I can hold on to some strand of hope, I won’t let go.

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The 7th of November. 

Feeling less shit today – no murdery dreams and my muscles are not so sore, so overall generally better. 

This morning, I wrote up a blog post while shouting at the Tory voices on Victoria Derbyshire. Eventually, I had to put on an episode of Bones because I was getting my blood pressure up. Then I put together the final gnome and took some photos of them all together. Now they’re sitting on the mantelpiece, having a lovely time. 

After lunch, I started work on the next Christmas project, but didn’t get much done before Ann and Tom, the couple interested in Callie and Carlton arrived. They pretty much immediately fell in love with them, as I expected. They are just too gorgeous to not adore. They’re going to change the kittens’ names to Molly and Bertie, so we’ll have to get used to calling them that. Plus they’ve given us blankets for them to get used to/put their smell on. 

After they left, I tried ringing the GP again to talk to this secretary who’s been trying to talk to me. I rang this morning, but she wasn’t available so I was told she’d ring back. When I tried again, she’d left. So then I talked to the team leader who did some investigating, but couldn’t get to the bottom of it. She’ll try again tomorrow, and maybe I’ll eventually find out what they want!

The 8th of November. 

Well, local anaesthetic in the eyelid is, much like most of the local injections I’ve had, not that bad. The only distressing local in the past was for the bronchoscopy, but that was for more psychological reasons than physical. 

Anyway. I was up just before six, because we had to be at the QE for eight. I was first on the list, which I was pleased about. I met Mr. Kolli before going into theatre, and we had a brief chat before he drew an arrow on my forehead so they didn’t do the wrong eye. Then I didn’t have to wait long for the theatre to be ready, so I put on my gown (over my clothes) and shower cap and went to lie down. 

A nurse put some music on (classical, disco, La La Land, Sinead O’Connor) and poured what felt like a gallon of two different strengths of anaesthetic drops in, with a tissue at the side to stop them escaping. Another nurse took her place, and I was given his hand to hold while Mr. Kolli injected the local into my lower eyelid. They both warned me about how awful it would be, so I was surprised to find it really wasn’t so terrible. Not that it was pleasurable, but I didn’t scream or even flinch, which he can’t remember witnessing with any previous patients. Brave Kathryn strikes again. 

Finally got round to zapping the rogue five lashes, and I didn’t feel a thing. So now they’re gone. I have antibiotic ointment to do four times a day (along with all my other drops) and I sported a very fetching eye patch until half past one. We’ll see if it has held off the bruising tomorrow. 

The 9th of November. 

This morning was arduous and long and frustrating. First was lung function. For the first time since I was at the children’s hospital, I had to get in the box (see photo below). Same tests, just different room/equipment. They took forever, it seemed, partly because I had to do one of them four times, plus she had to get some blood from me and it all just added up. Knackering. Then I saw Dr. Thompson, and he was not full of joy. The numbers are the worst he’s ever seen (for me), which is what I was expecting. We compared some x-rays from now and last year, and it is quite clear that the right lung has shrunk and the chest wall has sunk in, so I have less volume and the way I feel now is the new baseline. Great. 

Got out of there about half eleven, so just had time to get some coffee before going to see Andrew. That was a very confusing chat. It seems the lymphoscintigram actually showed that the right side works better than the left, because the lymphatic system is compensating for the rubbish venous flow. So now he wants an MRI with gadolinium so we can get a definitive picture of my anatomy. Which will require careful booking because he or a colleague will need to be there. JOY. And even when we know what is going on where, what we do is still up in the air because so many things could go wrong. Numbness, he cannot fix, but can sort out another MRI for that and refer me for nerve conduction studies. 

I don’t make any sense. 

The 5th of November. 

I hate Bonfire Night. I hate fireworks and bonfires. The brightness hurts my eyes and the smoke hurts my lungs. I hate them because I can’t enjoy them like a normal person and I am bitter about it. At least now they might stop until New Year. 

Did a blog post this morning, no great excitement there. I could hear Mommy upstairs in my bedroom, hoovering, and it made me think about all the stuff she does that I can’t and how I’ll cope if it gets to a point where she isn’t able to do those things. Hoovering, dusting, making my bed. I don’t like thinking that far ahead. But the only way for that scenario to be avoided is for one of us to not be alive and I am not a fan of that idea. In fact, I can’t bear it. Hence avoiding the future. 

Well, that was bleak. This afternoon, a lady called Tracey came with her partner to view Chester. He’s nowhere near ready to go and she knows that, but they got to meet and she could see if he was suitable. We think he will be – he’s going to be a friend for a sad dog. They left after about an hour, having provisionally agreed a date for adoption, which works for all of us because it means Christine will get to meet him too. 

The 6th of November. 

I was wrong about the fireworks. People are still doing it this evening, presumably because they are awful. Bah. And I woke up in a weird mood because I had the same dream about being a serial killer three times from different perspectives. 

So I’m tired. Physically, mentally. My muscles hurt from getting up from sitting on the floor with the kittens so every time I stand up I groan. Most of my day has been spent working on the last gnome, the biggest one. All his parts are now finished, so I’ll assemble him tomorrow. 

I had to ring the GP because they’d called on Friday about a letter from the dental hospital. When I did, the receptionist said it was a secretary who’d phoned but she doesn’t work on Mondays so I have to ring back tomorrow. Why a random secretary from the GP is ringing, I don’t know. 

I’m really not looking forward to my lung function tests on Thursday. I know the results are going to be shit and I really don’t feel like hearing for definite that the pneumonia and collapsed lung have resulted in permanent damage. 

 

 

The 3rd of November. 

I keep waking up earlier than I want to. So I put the radio on and the Today programme infiltrates my dreams, it’s rather irritating. 

This morning was routine blog post, chat with kittens, then back to Christmas gnome. Finished off the cuffs on the arms, then Mommy had made cinnabons so I iced them and we had lunch. After we’d given the kittens theirs, the buns had cooled down sufficiently for me to have one. Oh man, they are my favourite. 

Once I had finished and licked all the icing off my fingers, it was time to do the final pieces of the gnome. Rather large hat, nose and beard. Few more episodes of The Blacklist down. And I had a couple of phone calls – one from the QE, checking that I was still going next week to get my eyelashes done, and from St. Giles, because I’d rung them with another sleeve query. The sleeve on the prescription is not the one on the box, but we have solved the mystery and that’s all fine. 

The 4th of November. 

Well today I had to get up early and my alarm woke me up, such is life. Up, breakfast, coffee. Picked up a bunch of tote bags to put any shopping I might do in, and we went out when Becky and Alison arrived. Christmas Crafts ahoy!

I split off from the others, because we have different interests and it’s easier for me to go around on my own in the wheelchair. I had a bimble up and down the rows of stalls, growing frustrated because I couldn’t find what I was looking for. Eventually, I had to buy a show guide for a map. So then I found Toft and had a nice chat with the girl there, and I bought a kit to make Hank the Dorset Down Sheep. Then I bought some heavily discounted merino wool to make some socks, and went in search of some stuff to make a necklace. I have a crocheted patch to use as a pendant but it was impossible to locate what I needed. Will have to go to Hobbycraft or something. 

I met back up with Mommy, Becky and Alison, and we went to look at the fancy cakes. Some of them were incredible, like this dog wearing a raincoat. But after a while, the smell of sugar in the air was giving me a headache, and it was time to go. 

When we got back, Becky came in to meet the kittens. She could not deal with their tiny size. Got a lady coming to see Chester tomorrow!