Archives For eyes

The 6th of March.

Back to the crochet habit. Might as well!

I woke up still tired, wanting to stay in bed but I forced myself up. Rosemary was coming round for lunch, so we had no trips out. I spent my morning writing up a blog post, then I started another sausage dog. This one is brown and cream, which is not a combination one sees often in them but it’s in the book and if it looks shit then I won’t give it to anyone. Rosemary did like the one I’ve already done, in black and brown, because he looks like her dog, Otto.

While she and Mommy had lunch, I watched the first episode of season five of Agents of S.H.I.E.L.D. Absolutely batshit insane – jumped forward seventy five years into the future in space. Obviously.

This afternoon, I made the head and ears of the dog, watched some Bones, and booked Mac into the vet for his secretary vaccinations tomorrow afternoon. Got a viewing on Thursday.

The 7th of March.

Tired. Up early for hospital. Not haematology, as was also previously in the diary for today, just ophthalmology. Mr. Kolli, not Dr. Barry. Today was about rogue eyelashes. The clinic was running very late – they were missing a registrar – so I didn’t get seen until an hour after my appointment time. That was fine – I got a lot of Eat Up! by Ruby Tandoh read. I wish I could give it to my thirteen year old self and keep her from developing an eating disorder to begin with. I wish I’d be able to read that instead of Wasted.

He checked my pressures and they haven’t gone down very much, but he wants me to try to get the prednisolone eye drops down to twice a day before trying anything new. He’s going to get me booked in to do the left eye again, then do the right eye a few weeks later. It would be tricky to drive my chair if they did both at the same time.

We’d been planning on going into town to do some shopping, but by the time we got out, there wasn’t time, so we just came home for lunch.

Mommy went to Grandma’s, then when she got back, we took Mac to the vet. He was a good boy, just very chatty on the way! If only all trips there were so easy.

The 31st of January.

Today has been fine, although I got a disappointing email this afternoon so now I feel quite gloomy.

I had a better sleep, thankfully, and got up when my alarm went off. I wrote up a blog post, then I got back to work on Woody. The leaves, for want of a better word, of the pine cone take ages, and I have to sit in a position that is really uncomfortable for my back while doing them which is not ideal.

After lunch, I finished the pine cone bit off, then I decided that I was going to do some exercise. It was one of my New Year’s Resolutions to start working out again, even if it was much less than before, because I can still regain some muscular strength, even if I can’t do things I’d do in the gym. So I got out my yoga mat and did some very basic stuff, mainly on the floor for about half an hour, which was enough.

Since then, I got an email from Anthony Nolan about the blog I wrote for them. They want to publish it on Friday, but have edited out a lot of the best and most important parts, because they are either “scary” or “don’t offer a shared experience” for patients reading it. I wasn’t writing it for potential patients, I wrote it to be published in the press somewhere and why will they pick it up now a massive chunk is missing? I’m aware my story isn’t very inclusive for other patients but my uniqueness is exactly why it’s so incredible. I can still put it on my blog but what’s the point when the audience is so small?

The 1st of February.

It is too cold, bleah. I had to have my extra blanket in bed last night, but I at least had a decent sleep.

This morning, I did much crochet. Simon the snowman now, and currently he has legs, a body and eyes. Very productive, but not very interesting.

After lunch, we had to go into town because it was time for my eye test. I had a long chat with the optician about what’s been going on since my last test two years ago, when I had the eye GvHD but hadn’t started any treatment. We went through all the drops in currently using, and I showed her my last letter from Dr. Barry on myhealth which was useful.

My eyes are a bit worse, as I suspected, so I’m having a new prescription and I decided to try on some new frames as well to see if there was anything I preferred to the ones I currently have. I tried on several pairs, and have chosen a green pair by Jono Hennessy, who did my previous pair, so they’ll arrive in 5-7 days. I’ll have to come up with a new logo for the blog!

The 29th of January.

Finally I had a good night. Let’s hope it continues.

This morning, I did a blog post, then got back to work on Anton the angel. His hair took pretty much until lunchtime as it involves tiny complicated stitches. Glad that’s over.

I also rang Piccadilly to book an eye test because they sent me a reminder last week. I went to the last one and she basically couldn’t read my results because the GvHD had made my vision really inconsistent, but I think it might be stable enough now for us to try again, so that’s Thursday.

After lunch, my Little Prince soundtrack was delivered (nobody bought it for my birthday or Christmas so I had to treat myself) – I had to buy the CD because the music is not digitally available anywhere! Now I have to do something I haven’t done for years and rip a CD. I bet the youth wouldn’t know what that means. Then I made the halo, wings and arms of Anton, and put him together. Three down, three to go.

The 30th of January.

I have been awake since quarter past four. Not thrilled. I don’t know why – just woke up and couldn’t get back to sleep. Now my brain is all itchy and I’m looking forward to bedtime.

I have at least been productive. My crochet magazines have come back out of hiding after Christmas and I decided it was time to digitally catalogue the patterns I wanted to keep in PDF form. I’ve been able to get rid of all my TOFT magazines, which took a couple of hours and about 30% of my phone battery. I’ll have to do a few of these sessions to get through them all.

I then got started on Woody the pine cone, and worked on him until lunchtime. I also had a delivery of a yarn swift, which is like an umbrella you can stretch a hank of wool around and it holds it taut while I use the other thing I ordered, a yarn ball winder to make it into a ball! It is so satisfying and much quicker than my previous method, which involved chairs and tables which didn’t stay still and took hours. I did five balls today in the time it took me to do one before. It was still tiring though – my heart rate went to to 135 winding the spool.

After that, I ripped The Little Prince CD to my iMac, then I made a coffee and returned to Woody while watching Blindspot. It seems somewhat nonsensical so far.

The 13th of January.

I was feeling frustrated at myself, because I had to completely unravel the bear I’ve been making because I was going to run out of wool if I continued with the hook I’ve been using. Start again! However, Singin’ in the Rain is on and it never fails to cheer me up.

I was also annoyed because Daddy and I went to see Coco, but my experience was marred by the man behind us constantly talking to his son. Talking in cinemas should be illegal.

When they weren’t blathering on, I very much enjoyed it. It’s so colourful and well told, and for once I didn’t sob so I might be able to watch it again. The songs aren’t great though. Not a patch on Moana.

Not much headache to speak of this morning, which was good because we had to be up early for eye clinic at ten to ten. It turns out that the pressures in my eyes have gone up, so I’m starting a new drop to combat that. I’m to try to bring my dexamethasone use down to twice a day, then switch to prednisolone and get that to twice a day. Every time I’ve done it in the past it’s resulted in pain but hey, I’m a trier.

The 14th of January.

It occurred to me this morning that next Sunday is my birthday and I really haven’t thought about it at all. Got no plans, haven’t asked for anything. Not my usual self at all. I suppose I have just had too much other stuff on my mind!

Today it was back to being productive. This morning, I watched Sunday Brunch and restarted the bear. Over the course of the show, I finished the head, although even with a much smaller hook, it used more wool than I expected it to.

After lunch, I had to sit in silence so I could finish writing my blog post for Anthony Nolan. I took a break to watch an episode of The Biggest Loser with Mommy while she was not at hospital with Grandma, then I went to sit with the kittens and write some more. However, they weren’t keen on sitting still, and then I choked on some of my water which was terrifying for them and for me, so I returned to the living room where I got to the end. It’s a little bit longer than they asked for, so I’ll ask Mommy to proofread it, see if any of it needs cutting, then send it to Lucy.

The 27th of November.

Another rather festive day for me!

Got up a little earlier than usual because Mommy and I were going into town so she could give blood and we could do a little bit of Christmas shopping. Her appointment wasn’t until quarter past eleven, but we went in early to return some Zara dresses and the queue in there can be very slow. We escaped with a bit of time to spare, and my plan was to go to the Hotel Chocolat café to have a salted caramel and clementine hot chocolate while I waited, so she came too for a few minutes.

While I drank, I perused the Pandora catalogue for the right charms for my two December anniversaries. I eventually settled upon the two owls for the 19th and the reindeer at night for the 21st. When she came back, we went to buy them, then to Irregular Choice. They have some shoes that I want for Christmas but I’m not sure what size I am, so I wanted to try some on. The girl working there was very helpful, and she found similar shoes in what we thought were the right size for me to try. They were good, so I have an email alert set up and they’ll call me if they get any stock in. Next was Selfridges for me to get something for Daddy, and to check if Huda have changed their drawers. They haven’t, but I spoke to the woman in charge and she was hoping a delivery downstairs was new drawers! But if it wasn’t, they’re aware of the issue and are trying to fix it. Our last stop was John Lewis because I wanted to check if their haberdashery had any chain for a necklace but no luck.

Then home! I had some cheese on toast as the weather demanded it while we sped through the X Factor (hooray for Kevin! Although we don’t want him to win as that rarely ends well). After that, more crochet, although that was limited by my left eye being excruciating for most of the day.

The 28th of November.

I have a feeling that many entries from now until Christmas will involve me sitting and crocheting. I have so much to do! Making at least four different things and some are quite intricate so I have much more work ahead of me.

Today has been rather productive on several counts – I got a blog post done, spoke to both the secretaries I needed to, and had a fairly long conversation with Emma from Anthony Nolan about a cool thing that I am planning but can’t talk about just yet.

This afternoon I have been crocheting – mainly working on a present for Grandma but switching to the one for Mommy when she went out. I was also composing an email about this Anthony Nolan thing and working on some other stuff to go alongside it.

My eye has been much less problematic today, thankfully. I think not having any make up on has helped. Got to wear as little as possible.

The 17th of November.

Most of today, I have stayed sat in the armchair in fear, because twice when I got up, my chest hurt. I did not enjoy that, so I decided to avoid moving unless absolutely necessary. Thankfully, I have just tested myself and it felt alright.

So this morning, I fell back to sleep after my alarm went off, then I was woken up by some Bach on Desert Island Discs. Got downstairs and had to write up yesterday because I didn’t have time last night. Once that was done, I settled down in my chair to get working on Hank the Dorset Down Sheep.

And he has been my activity of the day! I left my chair to give the kittens lunch and go to the bathroom once, then I stayed put with my wool. I have made his head, body and two legs! Now my eyes are hurting but I only have prednisolone eye drops which don’t work as well as the dexamethasone, which I have run out of (unless I want to induce more agony with preservative). Not sure what I’m going to do until Monday.

The 18th of November.

Another day of much the same, but for slightly different reasons.

I got up when my alarm went off, and already my back was clunking. It has not improved as the day’s gone on, so I have stayed in my chair, trying to not be in pain. However, that hasn’t done me much good, and this evening I am unable to find a position that is comfortable.

I couldn’t watch Saturday Kitchen because Pixie Lott was on it, and I simply can’t bear her. So I put Bones on instead and got through two of those while I wrote up a late blog post, then made Hank’s other two legs. Plus I had tweets from Heidi that the crocheted item I made for her has arrived and she is very pleased, so I feel good about that.

After lunch, I made his ears and tail, then it was time to assemble him. Without his coat though, he is not cute. The rest of my afternoon, once he was put together, has been spent creating his woolly jacket. He’s not done, but I finished a ball of wool and that seemed like a natural place to have a rest. Currently it looks like he has a lovely vest on. I shall complete him tomorrow!

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.