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The 5th of December.

Ugh fuck I am tired and sad and stressed.

First thing I had to do was to out with Mommy to the sorting office to pick up my Christmas shoes, but that was the only good part of the day.

When we got back, I wrote up a blog post, and that took longer than it should have, which was bothersome. Then Rosemary came for lunch, so that was distracting and meant I couldn’t get on with more jobs.

I had some of the soup and cheese scone that Mommy had made, then I got on with my planned work. There are just loads of questions that keep coming up in the organisation of this event – it is a lot more complicated than I had imagined. I sent Daddy an email with some questions which he had additions to, then he got angry with me because he misunderstood my reply. I think we are friends again now though.

After that, I got my crochet out and have essentially completed one present. Two more to go. Then two other things to make. Sigh.

The 6th of December.

Mood greatly improved, despite a dodgy sleep and an early start. I woke up at three, then again at half five, after which I didn’t go back to sleep. Really hoping tonight is better.

I had haematology clinic this morning, where I met a new reg called Dr. Hussain. One of the first things he asked me was if the paper about me had been published yet, to which I didn’t know the answer. Just because I am the subject, it doesn’t mean I am kept in the loop. He didn’t have much to do for me, except my prescription, and took up the majority of my appointment. Then the pharmacists wanted to know about how my eye GvHD was treated, so I did some educating. Always teaching.

Pharmacy were going to take ages to fill my script, so we went into town to pick up two bits from Selfridges – Daddy’s Secret Santa for work and Jonathan’s birthday present. Back to the QE, picked up my drugs, home.

This afternoon, I did some crochet, and had a conversation with a chap from the venue of the event I’m organising so I could ask him the questions I’d talked to Daddy about. Once I was satisfied, I got the booking form back to him, so I should be able to announce it tomorrow!

The 21st of November.

Well I had a great start to my day, securing tickets for Sadie and I to go and see My Dad Wrote A Porno Live! Super excited for that, and we have great seats too.

I was at the chiro at 10:45, and that was surprisingly painful. The angry tendon that runs up the whole right side of my spine was very unhappy as soon as Trine touched it. Still, I am seeing Dr. Blaney tomorrow. Pray for steroid injections.

This afternoon, I planned to do a bit of looking at Christmas present ideas, but I got started on some crochet and just haven’t put it down. I’ve also been waiting for the pharmacist at Boots to ring, but they haven’t. They were supposed to be calling because my spare compression garments have arrived after waiting for two weeks, only to find the person on duty ordered the wrong thing. They have the code of the product but are apparently incompetent at using the information provided. Bad enough when the GP prescribes the wrong thing but when they have all the information and still fuck up…I don’t know. Gah.

The 22nd of November.

A slightly less productive day at hospital than I had hoped for, but that was more due to a misunderstanding on my part rather than anything that happened there. It emerged that the appointment with the anaesthetic team that had appeared on myhealth was not with the pain team, it was the one I had as part of the pre-assessment clinic. And having checked again, I don’t actually have another appointment booked in with Dr. Blaney, so we’ll be ringing his secretary tomorrow.

This did mean my visit was rather more straightforward. First I saw one nurse who did my height, weight and blood pressure. Then a sister called Kat, and we had to talk through my whole history, all my medications, what I’m allergic to, what I’m having done, and she gave me the pre-surgery checklist of things I have to do or not do in the hours preceding the procedure. I then went for bloods, but my veins didn’t want to cooperate, so I went to see the anaesthetist and drink a lot of water to pump up my veins. Had a very long conversation with him, mainly about my lung function, the pneumothorax and the pneumonia. He mentioned that my lung function is only 23% of what it ought to be, which was a surprise. I knew it was bad, but not that bad. Wow. Anyway, my lung function is not important because I’m having a regional block, which is like an epidural but it’s just one injection. I had to try to explain why I need to be examined in this situation but I’m not sure how much it made sense. That was all fine, so then I returned to the phlebotomist and she got some blood out of the side of my wrist. Then home!

 

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 22nd of October. 

Inside my elbow hurts so much. I didn’t have the compression garment on yesterday because Mommy wasn’t in and I wasn’t going to teach Daddy how to put it on. So today it’s been back on again and oh god it is so tight. I just need to keep it on; I’ll get used to it again.

Similar day to yesterday. Good night. Mostly crochet, in my chair. Watched Sunday Brunch, did a blog post. Won’t be watching next week, not unless I’m desperately bored. Just nobody of interest on at all. 

Crocheting something for a different project – can’t carry on with Heidi’s until the extra wool arrives. What I’ve worked on today might have to be done again, depending on the size of the next part I make. It’s a complicated equation involving different wools and hook sizes. 

Last night we ate the ciabatta and focaccia. The brioche got baked today but sort of got accidentally cremated so they haven’t been so good. Have to try that again and watch the oven a bit more closely. 

The 23rd of October. 

Well, tomorrow is off. It’s so frustrating. 

I spent my morning waiting for Michelle, Mr. Titley’s secretary, to phone me to tell me what exactly need to do tomorrow. I was going to give her until eleven, then ring her, but at 10.55 my phone rang. It was Stella, Dr. Richter, the immunologist’s, secretary. She was calling to offer me a cancellation appointment tomorrow afternoon, which I had to pass on because I didn’t expect to feel up to it. I then rang Michelle, and she told me that actually, they weren’t sure if tomorrow could go ahead, because I haven’t seen Dr. Richter yet. How fucking ironic. She said she needed to talk to Mr. Titley to know for sure, and she’d ring me back.

When she did, it was with bad news. No surgery. They booked me in with the hope that they’d know what was happening with my white cells by now. But we don’t. So she’s going to book me in for his next pre-screening clinic on the 22nd of November, when he comes back from holiday. 

I rang Stella back in the vain hope she hadn’t found someone else for the appointment. Of course, she had, and then I got a bit upset and explained how nothing I need doing can move forward until I see Dr. Richter. She agreed to try and squeeze me in it she could, and I left it with her, not feeling hopeful. But sometimes I can be surprised. I think a slot has been made for me at the start of the clinic, because I’m booked in for 2pm. Small victories.

The 18th of October. 

I think I am getting better? Very slowly. Like, I am definitely coughing less. I haven’t been quite as phlegmy today? Ohh progress is glacial. 

This morning I did a blog post, and did some more phoning to find out what’s going on with my Andrew appointment. Turns out Christine hasn’t had anything about me, but because I’ve made contact with her, she’s going to find me-related paperwork and wave it in his face so he tells her what he wants. 

After lunch, back on the crochet. Starting a Christmas present (eee!) – have to start thinking about that. Mommy and I have booked our train tickets for our annual London Christmas shopping trip. I hope I can wear more of my festive jumpers this year. 

My left eye has been protesting all day. So looking forward to going to bed and closing them. 

The 19th of October. 

I am just exhausted this evening. It’s not like I’ve been out much, or had a bad night, I’m just tired. Bleah. 

I spent my morning sewing beads to the thing I’m making for Heidi. Mommy had taken Alison to her physio appointment, and must have done something to the door, because when the veg man arrived, I couldn’t open it. It shouldn’t have been locked, but I got my keys and tried anyway. Couldn’t open it. I tried everything but it wouldn’t budge. He put the box in the porch and I yelled out the window “Sorry, I’m locked in!” When Mommy returned, she couldn’t open it from her side, so I ended up having to open the garage and let her in that way. I didn’t have to walk much, but I could barely breathe. I know I’m not well at the moment but still…I think the pneumonia has probably damaged them permanently. I suppose I’ll have to ask Dr. Thompson in November.

We had trip to St. Giles again today to try some more sleeves – not going for made-to-measure just yet. I’ve got two – one that stops at the wrist so I’ve got a glove to go with it, and one that’s the same style as my other one, both in different materials. I’m not enjoying the glove; it’s so squeezy on my fingers. 

And my eye is bad again today. Can I rest, please? Let me rest. 

The 16th of October. 

Started my day with a phone call from Shaki. She was outside, about to put some paperwork through my door, but didn’t want to come in because she has tonsillitis, bless her. Poor us. 

Once dressed, I got downstairs and promptly chucked my water over the table in the living room. This meant I had to take everything off it, including the heavy glass top so the embroidery underneath could dry. Well done me. 

I rang Emelda to discuss my next appointment with Andrew, but found out she’s on annual leave. Rats. I’ll try Christine, the appointments lady, again tomorrow. Then I wrote up a blog post, trying to ignore the apocalyptic light that’s been over us most of the day. 

Lunch, then sat here crocheting a cowl most of the afternoon. Suddenly it was half past four and we had to go to the chiro for my rescheduled appointment. I knew it was going to be painful, but necessary. The muscles that go up either side of the spine had contracted so no wonder I’ve been in more agony than usual. Plus lying on my front on that floor has been bad for my neck so it was a generally unenjoyable visit. 

I also spoke to a lymphoedema nurse because I’ve not been able to wear my compression garment today because it has made the skin on my elbow raw due to it being so tight. Going to try another brand. Why is nothing ever simple?

The 17th of October. 

This is exhausting. I think last night was better? The cough has been pretty similar today – I’m still bringing up phlegm the same colour as before so I emailed Dr. Thompson again. Today is the last day of the co-amoxiclav, and the last sputum sample I gave was essentially spit so obviously it hasn’t grown anything. Anyway, he wants to leave it a few days and we’ll see how I am. 

Spoke to St. Giles again and they want me to have a made-to-measure sleeve, so I’m being measured for that on Thursday. Also spoke to Mr. Titley’s secretary because I haven’t had my letter about Tuesday yet. She said one has been sent, but if it doesn’t arrive by Thursday I’ll be ringing her back. I do need to know what time to turn up etc. This cough better have fucked off by then too or we’ll be in trouble. 

I spent my afternoon watching stuff on Now TV and crocheting the cowl. It’s finished now. I watched the Nashville concert at the Royal Albert Hall and got emotional at Stand Up because it reminds me of Dean. I miss my friend. 

The 6th of September.

I am sleepy. Awake early for haematology clinic. We arrived at ten, and left at one. For once, I cannot complain about not getting enough of my book read, because that it all I did for nearly two hours. Charlie called me in, and to be honest, he hadn’t got much to do for me, just prescribe all the drugs, and he’s referred me to an immunology clinic to see how well my immune system is functioning, so that’ll be interesting. 

We got to pharmacy just after twelve, and then went to get coffee and sat around for 45 minutes, waiting for my prescription to be ready. Then a very quick trip into town; I needed another set of drawers, and Mommy decided she wanted some too, so she can put all her cross-stitching threads in them. I also needed toothpaste, and got some flat brew espresso chocolate spread. 

Finally got home just after two, and fed the hungry kittens and ourselves. Then I got to sit and crochet, while Mommy ended up taking Alison into Sutton for some errands, because with a broken wrist, she can’t drive or carry things. Then she was off to Grandma’s! She does too much. I worry. 

The 7th of September. 

It’s a good thing I got a good sleep last night as I’m unexpectedly going to be up early again tomorrow. Rang up the dental hospital to sort out my next appointment, because no letter has come through, and after half an hour on hold, I was given half past nine tomorrow! Wasn’t going to say no, after all that. God knows when the next one might be. 

I’d ordered a memory foam cushion for my wheelchair which we needed to pick up from the sorting office, so we did that, then went to Tesco for some Stork and milk (have some baking to do). 

At home, we found that the cushion doesn’t fit the chair, which was always a possibility as we didn’t know the dimensions, so that’ll have to go back. I also received a coat from ASOS, which I am not keeping – I need something with large sleeves that isn’t the fur (too much shedding) and they’re just not big enough. 

This afternoon, I’ve done a bit more make up sorting with my new drawers, wrote up a blog post, and crocheted some more doily. 

Shaki is coming to see the cats at the weekend. We’ve made zero progress with Henrietta – she still hates me and continues to attack me, even when I am giving her treats. She is probably going to end up going to some stables and catching mice.