Archives For eyes

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. 

The 11th of July. 

So Theresa May will definitely be Prime Minister. The House of Commons tomorrow is going to be just fascinating. The weather is going to be appalling it seems, which puts the kibosh on what I had planned to wear. Still don’t know and I really need to decide before I go to bed because in the morning I will not have time to be getting dressed a thousand times. 

This morning I did a blog post, getting back into the habit (hahaha), then after lunch, Mommy and I went into Sutton. I needed to buy some boxes to post things in which was tricky because I’d measured the items in inches, then had to convert those into millimetres and remember which was depth and which was width. Basically it was an arse but I got them in the end, hooray. We went to the station to pick up my tickets for tomorrow, but the machine there was broken, so we tried Wylde Green on the way home, where the man in the booth was very obliging. 

Shortly after arriving home, Ian from Anthony Nolan rang to speak to me about my talk on Friday. That sent me into a panic because in my head it was on Thursday, so then I had to check that I’d booked my tickets and assistance for the right day! Thankfully I had, so then we could move on to topic. I ran them through what I’m going to say, and they had some thoughts of things I need to add in. Will do my tweaks, then email them the bullet points!

The 12th of July. 

I have had an utterly smashing day. Had I not been bothered by what felt like a scratch on my eye all day which was incredibly painful and irritating, it would have been pretty much perfect. Well, also better weather would have helped. Less rain would have been ideal. 

It began with Michaela being an absolute darling and coming into Black Sheep early to cut my hair before my trip. I messaged her in the week because I was desperately unhappy with how it was looking, so she shuffled things around and fitted me in because she is wonderful. I want to grow my hair, so I really needed it shaping into a style which can be grown out. The back has been shortened and the fringe cut back in to make the front bits look longer and even out the length. 

Went straight from there to New Street where I arrived surprisingly early, so I picked up a paper (the self-service checkout machine gave me all my change in 5ps, the prick) and went to wait in the assistance office. I got taken to my train and settled in for the journey. I tweeted Euston to let them know I was on my way, but then we arrived early and the train manager was by my door so he sorted the ramp for me. I saw the assistance chap as I was going up the platform, and he explained that he’d been helping a blind lady, which was all fine because of our earliness and the Virgin man being there anyway, so I was not upset with them this time. 

I got in a cab to take me to meet Lauren in Covent Garden and the rain was torrential. Ghastly. He dropped me off as close to Le Pain Quotidien as he could, and when I got inside, it was crazy busy. At first they did not seem keen to let me wait. However, I managed to charm them and five minutes later, I had a table!

I ordered a flat white and an orange juice while I waited for Lauren and considered the menu. She appeared, and we ordered some food. There was much to catch up on, like my x-ray saga and the horror of her masters course, and I complained throughout about my sore eye. I haven’t had pain this bad since I had the eye GvHD and had to live in the dark for a month because all light was intolerable.

We paid up and had about an hour before I needed to get a cab. We wandered around Covent Garden, and ended up in the Charlotte Tilbury store where the staff were very helpful in getting my wheelchair in and out. I bought some lip scrub and they gave me many free samples! Excellent. 

It was time to go, so I looked for a Hailo taxi but there were none, it seemed? And an accessible Uber was going to take twenty minutes to arrive, so I thought I’d just GoogleMaps it in the chair. This was going fine until the rain came down again and I got lost. Very stressful. I thought I’d give Hailo another go, and thank God, one was nearby. He got there quickly and I got in as fast as was humanly possible. He was quite a new cabbie, but he got me to Westminster in one piece. I then had to race 100m down the road in the pissing rain and join a queue of damp people, waiting to go through security.

My bags were x-rayed and I got patted down while in the chair, then I just carried on through! I sidled up to a man in uniform, and he took me the secret wheelchair way to Dining Room A. I met Cassie and Simon from Anthony Nolan and the photographer. We were all bemoaning the weather, then an MP arrived thinking he was late when he was in fact early, so I had a kind of dry run talking to him, he had a photo, then he had to run off to vote. Will and Amanda, two of the other Young Ambassadors, arrived and we had a chat with the MP for the Isle of Wight who was very nice and asked a lot of questions which was pleasing; I think he had a genuine interest.

The room started to fill up, and I suddenly realised that in front of me was Yaser Martini! I jumped up from my chair for a hug and possibly one of the worst selfies in the world. He introduced me to Seb Casalotti who is the brother of Lara who there was a massive campaign to find a donor for. We were all grieving over the state of the world when we were joined by Georgie Ireland who is one of the daughters from the Give Our Dad A Bone campaign. Their story didn’t have a happy ending, but they found solace in that they made a huge difference for people with his kind of cancer. We talked about hating hearing/watching ourselves, and stealing clothes from our sisters. She was going to get into trouble over the skirt she was wearing when she got home.

I noticed Ben (from Anthony Nolan) and Yaser were discussing how it is desirable to get a slightly imperfect match to get some GvHD. I was just about to share some photos of my skin (nothing too graphic) when speeches began. First to speak was Mark Tami, Labour MP and co-chair of the APPG. His part was only brief, more to introduce Seb, but he did mention that his son had a transplant which I didn’t know. Seb started with a thank you video from his family, then spoke very eloquently about his gratitude, but also his hopes for improving the education about stem cell transplants, especially within schools and colleges, so we get young people wanting to sign up to be donors as early as possible. Then Richard Davidson, one of the directors of Anthony Nolan had his turn, and he thanked everyone for coming, spoke a bit about the report, and introduced me and the other Young Ambassadors for people to come and speak to about our experiences. I was immediately sought out, and from then on was telling the story! I was able to speak to Mark Tami and we discussed opiates and how he is very keen to do more to support mental health post-transplant. I was really happy to hear him say this because mine has been fucked up beyond recognition but it isn’t really even mentioned before you go through it. I had a conversation with a girl from Anthony Nolan who works in communications, and I ended up discussing with her an app I have which shows me where I could get good coffee in London, as she sometimes finds it hard to come by. Now she can have lots!

The event wound down, and we were eventually chucked out by someone in uniform who had to tidy up. A man was found to escort me back out the stepless way, and he was very fancy, in tails an’ all. Once I had escaped, I Hailo’d a taxi, who accepted, but then called me to say that it was going to take him ages and basically, he didn’t want to come, so he cancelled the job. I went back to where I’d just come from, where there was a policeman. I explained what had happened and asked if he could help. I expected him to maybe call someone who could call a cab as I presumed they would have some kind of service? But actually, he went and stood on the street and waited for one to come along that he could hail. And bless him, he stood out there for about twenty minutes while I waited by his box and tried to see if I could spot anyone I recognised. I saw Stephen Kinnock, but that was all. Finally, I heard the policeman’s whistle and I sped out to get in the cab after thanking him profusely. 

The journey back to Euston took a while but I expected it to so there was no stress, I had aeons. As soon as I got there I went straight to Boots to purchase eye make up remover and cotton wool pads to relieve my agony when I got on the train. I picked up some magazines and Pom Bears, and I was barely in the assistance office before they were telling me what platform I needed to be at. The train was sponsored by the new Independence Day film, so was covered in huge pictures of Jeff Goldblum. Fun!

As soon as I was seated, I cleaned my eyes and frankly I am not sure how much it helped. I just ate my child crisps and was thrilled to be able to block out all the light on the way home. 

The 4th of April. 

I would really appreciate it if the weather would decide what season it wants to be. Today we’ve had bright sunshine and hailstorms. Monica found them absolutely fascinating, although I’m not sure she would have enjoyed them quite so much had she been outside. 

This morning was a blog post and some kitty cuddles. I need to protect myself when I’m wearing leggings because I have little scratches on my thighs from when she’s jumped off my lap, even after her claws have been trimmed. 

I did not like today’s Agents of S.H.I.E.L.D, it was very stressful and sad. I may have had a tiny cry. Then it was time to go to the gym, but I had to make Mommy park the car so I could wait to hear Helen stab Rob on The Archers. I can’t say I noticed the point at which I became middle-aged. Never mind. When I got up to the changing room, someone had taken the locker that I always use (grr), but then I was able to do everything I wanted in the right order, which placated me a bit. I think the Hoarder Lady must have been lurking my tweets, because she came over to ask if I wanted the mat because she was leaving. It’s that, or I was giving off some seriously passive-aggressive vibes. Oh well! Then I left just in time to avoid Happy Clappy Chap. Excellent. 

The 5th of April. 

Blinding sun again, and no hail today! Progress for the weather. Let’s try and keep this consistency. 

It’s been a rest day, so not much to report. I had a phone call from Jen as I was about to start eating my Shreddies, because she was going to Lee’s garage and wondered if I needed any more supplies. No food or litter, but she had “three tons of Dreamies” so she brought me some of those, along with some blankets to send with cats when they’re homed. 

I spent most of my morning waiting for her, as I didn’t know what time she’d appear, so I decided to do some more crocheting. I’m doing the pyjama set which includes a nightcap and a teddy, and I’ve made most of the bear. Just needs a head. 

I hung out with Monica a bit this afternoon and we watched an episode on Fringe while she kneaded my jumper, until Mommy returned from taking Grandma home from Fellowship. Then we caught up on last night’s Criminal Minds (bad times for Derek) and The Island with Bear Grylls (Simon is a sexist prick and I sincerely hope Erica gives him a swift kick in the balls). We started on The Oliviers from the other night, but then Christine rang for chats, so now here we are!

My left eye has been incredibly bothersome all day. Eye drops not helping. Pah.