Archives For eyes

The 14th of July. 

I have not really felt up to participating in life today. Not quite under the heavy cloud, but definitely not feeling myself. 

I didn’t have a great start to the day; up early again for the dentist this time. I saw the dentist first, and that was fine, but then I saw the hygienist and it wasn’t my normal one. I did not like her. She was very against me using a manual toothbrush or floss picks, and she was adamant that the kids’ Sensodyne Pronamel toothpaste isn’t minty (it definitely fucking is) and wouldn’t listen to me when I protested. She said I had loads of plaque, then cleaned my teeth really aggressively and painfully – there was blood all over my face and bib which has never happened before. She really didn’t seem to care about my history, or the fact that in all the time I’ve been at this practice and seeing Mrs. Richards, nobody has felt that I had any problems. I was very glad to get out of there. When I had to rebook, I made a point of making sure it was with my normal hygienist. Not seeing that woman again. 

Got home where I could finally have my coffee (no time before I went out), and I rang the lymphoedema clinic that has been recommended to me. They said I needed a referral, so on Monday I’ll get a consultant to write a letter. 

The rest of my day has been spent looking for something to wear on Tuesday. Fuck my arm. If I weren’t right-handed, I’d have chopped it off. 

The 15th of July. 

I am so tired. Another bloody early start for another morning appointment. This time it was to see the eye man at the QE. They were not running so on time today, so my 9.50 appointment ended up being more like half ten. Still, it was good news – said they were the best he’d seen them, which would certainly tally with how I feel. I can cut out one eye drop, so it won’t take so long to go to bed, and he’s prescribed something that might be better than Hyabak. 

Got home about twenty to twelve, and the stuff I’d ordered from ASOS yesterday had arrived. I’d sent for a couple of shirts and a dress. I’m definitely keeping at least one shirt, not sure about the other, and the dress is going back. It’s too dark for me. Shame. 

This afternoon, I listened to the tennis while writing up the venoplasty blog post, and I’ve been to pet the kitties a few times. There is interest in Bree but I really need Betty to go first, or she’ll freak out of she’s alone for the first time in a new place. Bah. 

Finally finished that doily I have been working on. I think next I will do some things for the new babies that are coming soon – Peter and Sophie’s, Michaela’s, and Robyn and Stu’s. All the babies!

The 16th of June. 

I have a tiny bit of good news. I gave the ciclosporine eye drops another go last night, fully prepared for it to be awful again. But it was fine. It stung a bit, and first thing this morning was a bit tricky, but it was so much better than last time. So now that extra line of treatment for my eyes is up, let’s hope that helps. 

So it’s been a quiet day. I wrote up a blog post this morning and this afternoon I did some podcast listening and redid all the crochet I’d had to unravel. Now back to where I was, I can try to finish. Will have to do most of it tomorrow because on Sunday, new kitties come, so I will be super distracted. I need some tiny floofs. 

The more that comes out about Grenfell, the worse if gets. The Queen and Prince William visited victims today, Theresa May only went to the hospital where she could control the narrative. Then she goes to a church but nobody sees her and she sneaks out of a side door. No council-lead support; everything is being done by the volunteers. Everybody in power is doing the bare minimum, sometimes not even that. It’s inhumane. 

The 17th of June. 

So hot. So bright. Being on Voriconazole means I’m not really allowed to go in the sun (it majorly increases the risk of getting skin cancer and since we know someone who did get it because they didn’t know, I’m not taking any chances), so I can’t go outside and enjoy it, but even if I could, I’d be so photosensitive, I’d be blind. I miss being able to see without pain. 

It’s been mainly a day of crocheting. Want to finish the doily. And I’m doing very well – I’ve got one round left. Although focusing on tiny crochet hasn’t been great for the eyes. Finish a round, have a rest. Lots of drops. 

Very little to say. I iced some cakes and put sugar elephants and ducks on them. I climbed the stairs and it was fine. That was a really good feeling. It’s been so long since I didn’t need an immediate rest when I got to the top. 

The 22nd of March. 

I have been struggling again today. Needed oxygen on and off all day, to the point where I didn’t think I could cope with a visit to the chiro. I was supposed to be there at twelve, but the thought of going inside from the car, getting changed and all the movement involved in the manipulation just seemed impossible. We’ve moved it on a week when I will hopefully be feeling better. 

We did have to go out, but I just stayed in my chair and concentrated on breathing. The trip was necessary because I have run out of facewipes and need a new toothbrush, so I got all of those things from Superdrug and we returned home. I know, such excitement.

The rest of my day has just been sat in my armchair, finishing up the bunny and watching the horrors from London unfold. Some of the team from Anthony Nolan were there, including Emma, one of the other young ambassadors, to thank MPs for defending second transplants. They’re all fine, I think just got very bored and wanted to go home. 

In a way I’m only surprised this hasn’t happened here sooner. I have nothing poignant or useful to say. Speculation is pointless. Let’s not be afraid. 

The 23rd of March. 

Well, the majority of today has been rather dull. Mainly crocheting, although it was made difficult by the fact that the vision in my left eye has been a bit blurry all day. I had been ignoring it, until I actually looked at my eye in a mirror and saw a weird film that has appeared across the top of my iris. 

This was somewhat concerning, and considering my history, we thought it was best to get it checked out. It was gone five o’clock, so we decided it would be better to go to the eye hospital rather than the QE. However, they close at seven and it takes a good half an hour to get there so we had to get a wiggle on. 

I was triaged, then we went to sit in the waiting room. It’s an odd sort of place because you just wonder what is wrong with the eyes of all these people, as it isn’t generally obvious (except for the man with the eye patch). We were told it would be a 2-3 hour wait, but a nurse called me in after about ten minutes. I explained the problem and ran through my basic medical history, then I tried to read some letters off a board (quite pitifully). She asked if I wanted to wait in a side room instead of amongst the rest of the patients, which I was very grateful for, partly because I could hear many coughs and sneezes but also some very annoying children were out there. 

We then sat and read our books for an hour and a half, until a doctor came for me. He looked vaguely familiar, and we quickly realised it was the chap I saw at the QE in February, but he’d got new glasses. How fortunate that doctors like to spread themselves about. I had the letter he’d written after seeing me before on my phone, so he read it to remind himself of my case, then had a look at my eyes. He whipped out some eyelashes again but generally he was not too concerned about what he could see. It doesn’t look much different to what he saw before – apparently the film has been there some time, I have just not looked at it. Basically my eye has just got a bit angry and inflamed. I don’t need to really alter my treatment apart from an antibiotic ointment and using more lubricating eye drops. This was very reassuring, and even though it turned out to be nothing, I’m still glad we went. 

When we got home at nine, I had a present waiting for me from Denise, which was a Pusheen notebook and get well soon card! Super cute!

The 10th of February. 

The news is so depressing, I have put Phineas and Ferb on instead. It is a nice distraction, and there are amusing bits for grown-ups. 

I had planned on being productive today, but somehow it did not really happen. I wrote up a blog post this morning, although in writing that, I’ve just remembered that I didn’t publish it yet. Will do that when I’m finished here. 

Mommy went food shopping, so I was twiddling my thumbs while waiting for her to come back so we could have lunch, but it took somewhat longer than I anticipated, so that was time wasted. Then after we had eaten, we decided to watch some more Case, and I can’t crochet while that’s on because I need to pay attention to the subtitles. 

So, two hours were gone on that, and now I have half a doily. One positive of the day is that I found another jumper that can accommodate my ginormous arm. The parka is not going to cope anymore, nor will it keep me warm, so when I go to the QE in the morning, I am going to have to wear Joan’s enormous fur that she gave me. Knew it would come in handy one day.

The 11th of February. 

One can never call a day when one is up at quarter to seven (particularly when that day is a Saturday) unproductive. I had another hospital appointment, this time with the eye department because of the ridiculous sensitivity that I’ve had for the past eight months. First, the chap could see that I had several lower lashes in my left eye growing inwards so he numbed it, then whipped them out with some tiny tweezers. There is also some mild GvHD acting up, not cool, so I’ve got some dexamethasone eye drops and hopefully they will do the trick. 

Went into town afterwards to get some toy stuffing, and got some more of my favourite chocolate from Selfridges as it was half price (slightly worrying – I hope it doesn’t mean they’re going to stop stocking it), alongside some triple double chocolate Oreos which we are going to put into brownies. 

Popped into Tesco on the way home, where I felt very overdressed, driving around in the fur. It’s not for supermarkets. Then I was starving by the time we got home, so we had lunch, and since then I’ve been crocheting Carol’s birthday present. Becky came round because I’d bought her some Malteaster bunnies, and she updated us on the local news, which is that the WHSmith has had its cash point ripped out. Plus school news was swapped for health news, and now I’m watching us probably lose to Wales at rugby. 

The 10th of December.

Ugh. I feel like garbage. I think it is 95% because of my eye still being irritated and irritating. It is marginally better than yesterday but nowhere near adequate. 

I got one blog post for before staring at a screen became too sore. Seriously, I have spent a great deal of my day with my eyes closed, wishing I had the ability to nap in the day. I had some brief respite when I made a chocolate orange drinking fudge and ate a Dorotea biscuit (they are the super delicious biscuits that I have only ever found in Harrods, described as “mini pastries” but they are not, they are chocolate biscuits). 

Honestly I would just like today to be over because I want my eye to feel better and I am very grumbly which is no fun for anyone. Also it would be great if my back would not hurt for every single second of the day. 

The 11th of December. 

Vastly improved today. My eye was still slightly dodgy this morning, but has got better as the day’s gone on, and my back has been terrible since I got up. Doing anything that requires me to support my own back has been incredibly painful. I had thought I’d go to the gym if I was feeling less shit, but considering the light at the gym is brighter than at home, and the pain I’ve been in, it was not a good idea. I won’t get another opportunity to go until Thursday, but oh well. 

So this morning I was able to write up the post I should have done yesterday, and I watched Joel on Sunday Brunch. I think what’s so great about how well I’m A Celebrity has gone for him is that when I saw him at The Glee, he was so excited to be doing a gig there, even in just the studio, but now his tour’s selling out and he’s doing bigger venues, I know he won’t be taking any of it for granted. Bless him. 

I got to impart some good news to a potential adopter who liked a kitten but he had a viewing yesterday. Happily, his brother and sister got reserved instead so I got to tell her he was still available! Oh, she was thrilled. 

This afternoon, I’ve been mainly playing with our kitties. They really like the jumper I’m wearing today and keep trying to eat the penguins on it. Stupid kitties. 

The 8th of December.

Back in London for our annual Christmas shopping trip. Kittens were fine so we didn’t have to worry about them while we were out. We left the house at half past nine for our train at half ten, and had a very uneventful journey down, save for a super fun baby who I got to make faces at.

From Euston, we went straight to Selfridges. I was disappointed to find that they had no rainbow bagels, but that was probably for the best, as we need to make space in the freezer, not take up more. We went up to the Christmas shop, where I bought a very cute mouse ornament, and found exactly the kind of wrapping paper I want to use this year, so now I just need to get it here, as I wasn’t going to carry it round London all day. We made our way over to the Selfridges Kitchen to get a table, and soon enough, Lauren appeared! We swapped presents, then went to get food. I had a smoked salmon, cream cheese and spinach crêpe, and we got to catch up, mainly talking about Christmas and her job.

When we were done, she went home for a nap, and Mommy and I went to Liberty. I cannot be in their scarf hall without thinking of The Apprentice now. Their Christmas shop was not very exciting – there were some cat decorations that I liked but I was not prepared to pay £15 for one. Maybe £5. Also they have a big thing about peacocks this year. Is the traditional Christmas peacock something I’ve missed? Anyway. On the way out, I had a great experience with a guide dog in the lift who moved out of the way of my chair in such a courteous fashion, it was adorable.

Next stop Anthropologie. I just wanted one of their Christmas mugs, and Mommy wanted to buy things that will be Grandma’s Christmas presents to her and Daddy. I couldn’t find the mug, and there was a part of the shop that was inaccessible because of steps, so a very helpful customer service assistant took me through the back of the shop and down in the goods lift. It was really tight and awkward but she was so good, then when I still couldn’t find the mug, she went and got one for me! Then, when we’d paid, instead of me going back the difficult way, the helpful lady got the boys on staff to come and carry the chair up the five steps so I could use the normal lift. I was so impressed with them.

Our next destination required a taxi, who took us to Dominique Ansel Bakery. It was amazingly not busy, so we were able to have a good look at everything before deciding. I had to have a cronut – an actual cronut – and Mommy had a Kouign Amann. My cronut tasted like a Kinder Bueno. I would like to try maybe a chocolate one so I can compare it to a Rinkoffs one, but I would say the Rinkoffs version is just as good. I also bought an extra moist brownie and a chocolate chunk cookie to take home.

Last stop was Harrods. I bought a brownie from there too, plus some coffee and biscuits. In their Christmas shop, I got a little mouse in a Harrods vest to go on the tree, and there was a very tense moment when we heard a smash and everyone went silent and looked around for the culprit. Thankfully, it was someone who worked there, so it was fine. It’ll just come out of her wages. We had a mildly stressful moment in Villeroy and Boch when they couldn’t find a stock version of what we wanted to buy, so we ended up taking the display one, then hurrying out so we could get a cab back to Euston.

It felt like the longest journey in the world, but we finally arrived with just moments to spare.

Home, toasted teacake, bed.

The 9th of December. 

I feel pretty ropey today – super tired, and my left eye has been really sensitive and sore all day which hasn’t helped. 

So it’s been a pretty quiet day. After breakfast, coffee and lots of kitten hugs, I spent a good hour writing about yesterday. I would have written up the post for the 6th and 7th, but looking at screens has been quite painful. That has also meant that I couldn’t really do the Christmas shopping u wanted to do today. Maybe tomorrow if my eye is better. 

After lunch (and half my Dominique Ansel cookie), I went upstairs to lie down and give my eyes a rest from looking at anything for a while. I gave the kittens a good cuddle as well because we had to go back to the vet today. It was just for their general health check so nobody got stabbed in the neck like last time. They certainly remember that because none of them wanted to get in the carrier today – two ran to hide under the chair.  

We did get them all though, and Rory the vet was very happy with them all. They need to eat more before they can be neutered, but I don’t even know what the plan is for them right now. There are things that need to be worked out but I don’t need to worry about that, I just have to keep feeding and petting them. I can do that.

 

The 13th of July. 

Today has mainly revolved around writing about yesterday and putting in eye drops/using the cooling eye mask. My eye is marginally better but definitely no make up today. I think it will be okay by Friday.

There was so much to write about yesterday that it has honestly been my only activity of the day. I stopped to eat lunch, and for us to go out to liver clinic. My appointment was half past two, and I didn’t get to see James until just before four. He’s too popular! But in the meantime, we talked with Kirsty, Monica and Philippa. Monica got slightly teased about being on tv but it was all out of love. 

When we finally heard my name called, the first thing James brought up was the most recent letter from Andy Toogood. It’s so recent, it was only written on Monday and we haven’t actually had it yet. It seems that my x-ray has at long last been reported on, and it is not good news! It shows a “marked degenerative change” in my lower spine. He has discussed it with his colleague, Mr. Harland, a spinal neurosurgeon, who wants an MRI and to see me in his clinic, so I’ll get some other letters too. And maybe I’ll have spinal surgery. 

From a liver point of view, all my tests are really great and boring, so he couldn’t be happier! Back in six months, when he will have another new baby to show me pictures of!

At home, I have been scribbling away. Finished just before dinner, and now I have to complete my talk for Friday so I can email some notes to Ian tomorrow!

The 14th of July. 

My eye is improving. I can tolerate light now, for the most part, hoping I will be capable of wearing mascara tomorrow. 

I spent my morning writing up my notes to send to Ian and Anneliese from Anthony Nolan so they know what I’m planning on saying, and I had to find the original versions of some photos of me having my transplants, because the ones I had were not of reasonable quality. 

Speaking of transplants, I learned today that NHS England is no longer going to be routinely funding second stem cell transplants for those that need them. They are, apparently, unaffordable. What is affordable is a prosthetic penis if you have erectile dysfunction. If your cancer comes back and you need a second stem cell transplant? No, sorry, your life is not worth saving. If that had been the case in 2008, I would have been told the same thing as my grandmother sixty years ago – “Sorry. You just have to go home and die.” How can that be the case? That advances in science makes these treatments cheaper and our knowledge means we can perform them better, but now we can’t afford to save the lives of the very people that donor drives and research is being done for? I accept that I am now unfixable, but that is because my body is simply not up to it. If I were being told that there was a good chance I’d be alright if I had a particular treatment, but I wasn’t worth the money it would cost, I would feel very differently. We spend millions and millions of pounds treating self-inflicted diseases, smoking and drinking, but we can’t pay for people who have had no part in their life-threatening illness to have a second chance. I don’t understand. I don’t want to. 

What I want is to change it. I don’t accept it. With Anthony Nolan’s support, I will not be letting this go. If we spent the amount of our GDP on the NHS that Germany does, we could vastly increase its budget. Even Portugal, whose economy is not looking fabulous, spend more than we do. The government continue to bang on about how well the economy is doing, but they keep cutting away at health and social care, two sectors that desperately need each other, and the system is just going to break under the strain, and soon. We might have a new Prime Minister, but Jeremy Hunt is still in charge of the service with which we entrust our lives. I cannot just worry about this. I need to do something.