Archives For qehb

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 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!

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 2nd of October. 

It is just relentless. Doesn’t stop. Don’t know what time I fell asleep. It was after Daddy got home, past one. 

Everything hurts. Both shoulders, all of my back, my ribcage. The only way I can suppress it is to lean forward, but that makes my back pain even worse. Thank god I’m seeing the pain doctor tomorrow. 

I went to St. Giles today to get a new compression garment. I met Jane, who is the one that works with Anne Dancey. She looked at a few different sizes, but actually the first one fitted. I’m not loving it – I forgot how squeezy they are. I’ve got to ring them in a few days if it’s okay and they’ll get the GP to organise a spare one for me. 

Henrietta is going today. She is not getting any happier here, so Shaki is going to take her back to the colony from whence she came. She’s well now, and has been spayed so can’t get pregnant again, so this is the best thing for her. She is not destined to be a pet.

The 3rd of October. 

My chest quietly rumbles on. If I’m not coughing, I’m burbling away. 

I think I had a slightly better night – I don’t think it took me quite so long to fall asleep. Not that it’s helped much. Still just coughing up phlegm all day long. It’s funny, the cough is so loudly phlegmy, yet people still offer me water like lack of moisture is the problem. It is quite blatantly not a dry cough. It happened while I was waiting to be called through in pain clinic this afternoon. Like I will drink the water and be like HALLELUJAH YOU HAVE CURED ME!

Speaking of pain clinic, Dr. Blaney does agree that steroid injections are the next step, as any stronger drugs are all opiates that will probably affect my breathing. However, he doesn’t want to do those until we know why my white cell count is consistently high. I get it – if we introduced infection into my spinal fluid, that would be a problem. So now we have to badger the secretary of the immunology doctor, and she’s not back until Thursday. 

The 10th of September. 

Today has not been so terrible, in terms of pain, but I have still felt pretty shit all day. 

I’m still tired, from not sleeping properly due to pain, so I got up just before the start of Sunday Brunch and got dressed in a cosy jumper and leggings, because the weather demanded it. 

I have, again, not moved a great deal, but also have not crocheted at all because I just can’t concentrate. I thought, after lunch, that I might need a nap, so I went upstairs to lie down. I put on a podcast, curled up and closed my eyes, but I did not fall asleep. This is good; it means I am not ill! Just feel shit because I’m tired and in pain. Preferable. 

After coming downstairs from my rest, I watched three episodes of Bones that had appeared overnight, and tried some Hugo petting. I forced him on to my lap and stroked until my arm was tired. He must learn to enjoy it. 

The 11th of September. 

Another early start, but for a good reason. I met up with Adam this morning, because he’d come up to the QE to talk to some of the nurses about stuff Dean wanted to do. It was really good to see him and give him a big hug in person, as opposed to verbally via direct messages on Twitter. We talked about how it had been in the last couple of weeks, and at the end, and his incredible appearance on Victoria Derbyshire. How he’s coping, how I am. There are things that are being planned in his name that I am looking forward to seeing. His legacy will live on. 

He had to get going up to YPU, and I had to go home for lunch before my chiro appointment. Trine has managed to make me feel some relief – it appears one of the muscles on the right side of my back had gone into spasm and travelled all the way up (or down, I’m not sure which end it started) which meant all of that side was contracting. No wonder I was in pain. She managed to work some of it out, while I gritted my teeth. Thankfully it hadn’t transferred into my neck, so I just needed some ice pack treatment when I got home. 

Since then, I have crocheted some mice for the kittens to play with. Henrietta has appropriated an old one which is incredibly tatty, so now they have some more that aren’t falling apart.