Don’t call CSI

Hello folks,

I woke up to the scene of a mini massacre yesterday morning. Lol. Since I had the stroke in 2021 I’ve had to take blood thinners. Also my skin is very frail from all the steroids. I somehow banged my elbow in the night and slightly skinned it. It didn’t wake me up but it did make me bleed. I managed to get the sheet, the mattress topper, the duvet and duvet cover, pillow and pillowcase. I couldn’t have done better if I tried in making sure I spread it over every bit of bed linen. Lol. 

I must’ve been somewhat aware because I was a bit restless for me and kept putting the radio back on every hour till about 3am. 

I’m having a lovely time in Ireland but it’s made me really aware of how challenging it is to live in an able bodied world when you are differently abled. I’m in rural Kerry which is quite remote. There is a road/track down to the village that’s about a kilometre away. You need to be a brave soul to cope with the camber of the road on the mobility scooter. I was sure I’d end up in the ditch. It’s also VERY bumpy. Then in the nearest towns there are fewer places to be able to cross the road as far less dropped kerbs. There are a lot less differently abled people around it seems so when I’m out and about the kids really stare. I don’t mind and I just wave at them. If I’m not wearing the mask I give them a big smile too. Most times they smile and wave back.

After waking up to the massacre yesterday I was hoping for a better night last night  I’d had a bit of a bad day with nausea and lack of appetite so was looking forward to a good nights sleep  my body decided otherwise  I started to cough and it kept waking me up  I also had a scratchy throat. Even in my drowsy state I knew that wasn’t a good sign. This morning I have a very deep gravelly voice, a sore throat and a cough and a horrible headache. Have you guessed what’s coming? I have bloody covid again. Oh my days what is it with my trips to Ireland and getting covid. I got it here for the first time last year and it caused me problems from July through to March. I still have remnants of the impact of the set of infections that were set up by the original covid infection. 

My timing is always good. It seems most of the team that know me back in London are on A/L. This is very important as they all work so hard but the timing sucks. Lol  I need someone from Kings to contact Cork haematology to arrange the medication I need. Why do these things always happen on a Friday? Let’s hope it gets sorted. 

Despite all this it’s done my soul good to be in these mountains and such beautiful surroundings. I send you back some Irish friendliness and a dollop of love and hugs.

I’m now bionic!

Hello lovely people out in the virtual world. I hope this blog finds you in an ok place. If you are doing it tough just now, I hope this blog gives you comfort and strength. 

My set of miracles has continued unexpectedly for me lately. I’m still in shock about it all in many respects. As those who read my blogs know two weeks ago I had a cataract operation. For the first time in my life I’m not wearing glasses except to read. It still seems so weird. I’m slowly adjusting and getting better at remembering to take my reading glasses with me. 

Well if that wasn’t good enough news I then had an appointment with the lovely April who is a dentist at Guys. She’s been doing some work for me over this last year. I’ve had to wear a denture for 4 years now. I snapped my front tooth munching into a raw brussel sprout. I had previously snapped another one eating a chocolate matchstick. I have all the luck. Many of my teeth have cracked and come out and I suspect a few more will go before it’s all finished. I’ve hated the denture with a passion since I’ve had it. Guys were really good and made another bespoke one with metal plate that would be better for seaming the temperature of food. The problem is I hate having things in my mouth. I’ve suffered from chronic nausea for many years now and the denture just added to my struggles. Also food would get trapped underneath and when I took the denture out this debris would turn into gags ville for me. My very dry mouth at times was the icing on the cake as to why it was so hard to wear these well made teeth. 

I really wanted implants to sort me out as they are permanent and transforming. Unfortunately with my osteoporosis/osteopenia and lack of immune system this is just not an option. Instead the fantastic team at Guys decided they could put a tooth in the front gap with a wing back bridge to the next tooth. This keeps the integrity of the good tooth and means nothing bulky in my mouth. 

I was a bit nervous on the day as I’m not keen on dentists but also because I was worried it wouldn’t work. I need not have worried. April did a grand job as you can see from the photo. I feel like I’ve been given my smile back. Before I had this done, when I was at home, I’d take the denture out because I hated it so much. This meant I didn’t smile if someone unexpectedly came to the door. I was always putting my hand over my mouth. I’m so grateful to the team at Guys who have looked after me so well over many years. I hope you know how appreciated you are. 

My final miracle is that despite being in close proximity to someone who had Covid, I didn’t pick the virus up. I’m still in shock about this. I’m as cautious as I can be but sometimes despite that, you come into contact with things. This happened a few days before we were due to sail to Ireland for 3 weeks. What is it about me and Ireland and Covid? Despite being exhausted from the journey and needing two days to recover, I have still not come down with anything. Wow! Ain’t that amazing? 

Life is so full of ups and downs for those of us that live differently abled lives and who carry the burden of the effects of cancer treatments. I’m glad to be able to share with you these modern day miracles. I hope it encourages you all to keep plodding on till you meet some of these angels in the form of medics. 

I leave you with some photos of the beautiful scenery around me from the lovely mountains of Kerry. 

Rebel Rev experiences a miracle

 

I had a life changing experience this week and I’m still processing it all. To help you understand the context and significance I need to go back to my early childhood. I wore glasses from when I was a toddler. I was born with a lazy eye which even back then could have been corrected by wearing a patch over the good eye and retraining the lazy eye. Us as children were not a priority for our parents. My mum told me when I was older that she didn’t make me wear the patch because I kept banging into things. When I understood a bit more about the condition I checked again why they didn’t keep up with the patch as I may have better vision if they had. My mum couldn’t really take criticism so she said I kept pulling it off and wouldn’t wear it. I don’t know about that but I do know I was a toddler and they were the adults. Sometimes as a parent you have to do the tough love. I think it was much more about the fact that they were never around but always working in the pub below or drinking and children’s needs were an afterthought. The other regular occurrence was my glasses would be regularly broken. I was an active child which caused some mishaps but also my chaotic home life challenges created a few broken frames too. The glasses were eventually replaced but months later. By the time I was 13/14 I was going to the opticians myself to get it sorted. 

As an adult I’ve never really had much vision in my left eye. My right eye has had to work really hard to do the work for two. That meant o went into variifocals in my early 30s which is much earlier than age related deterioration changes. 

When I started having problems with my eyes after my stem cell transplant I was referred to the ophthalmology department at Kings. They discovered I had very dry eyes probably related to the graft verses host disease I developed from the stem cell treatment. I had blepharitis and marks on my cornea and cataracts in both eyes. They gave me some treatment and advice that sorted the other problems but the cataracts continued to slowly develop. These came about as a result of being on steroids, at times at very high doses, for the last 10 years. 

As the cataracts worsened my vision also slowly declined but because it’s so slow you don’t notice it. Eventually though driving at night started to be problematic. The glare from headlights was just awful and created a starburst effect. I knew I would have to get it sorted as my independence was now at stake. 

The ophthalmologist confirmed I needed surgery. This made me very anxious. You might think this strange as I have my bone marrow biopsies and Hickman lines with no sedation. I take most things in my stride but this was different. Not because it was eye surgery which I know makes some people squeamish but because it was surgery on my only good eye. If any thing went wrong I’d be in major difficulty. 

The day came and on Wednesday I presented myself to the day surgery unit at 7.30am. There were 6 of us having cataract surgery on the morning list. The order you went into surgery depended on how fast your eyes dilated. I was told my brown eyes might take longer to dilate. Fortunately mine weren’t too bad and I ended up in the middle of the pack. Then when they did the checks to take me through they noticed I had a positive VRE result on the system. This was dated Feb 2024 which is when I was an inpatient. I knew nothing about it, nor did I know what VRE was. I explained that if haematology thought I was still positive they would treat me separately from the rest of our vulnerable community. The chap doing the screening said he was bound by the units protocols. He went on to explain that I’d still have the procedure done but had to be at the end of the list. I accepted my fate but was slightly perturbed. This was because I was unusually anxious and just wanted it over and done with. Normally I don’t care. The guy explained that I’d be at the end of the morning list so they could do a clean over lunchtime to prepare for the afternoon. 

At this stage I thought a +VRE was another respiratory infection. I sent an email to my outstanding haematology team and my lovely CNS (clinical nurse specialist) who mailed back explaining it all to me. VRE is an antibiotic resistant bug. Lots of people have this as a harmless bug in their bowels. In immunocompromised patients like myself it can be problematic. I didn’t expect my bowels to be brought up when I was having eye surgery! Lol

The consultant anaesthetist was a smashing bloke. He had a really good bedside manner. I think he was a bit surprised when I answered his questions about my health. He asked me how I felt about it all after he’d gone through it. I said I was unusually anxious for me who normally doesn’t suffer from anxiety. He said lots of people don’t like anything to do with eyes. I said it’s not that, it’s because it’s my only good eye. He totally understood that. He said there was only a 5% chance of anything going wrong and he was sure I’d be fine. He said that to me to reassure me but it didn’t. I think those were the odds for hearing damage from the transplant and I got that! 

When they took me in, another problem occurred. The chair that turns into an operating bed was not made for someone my size. The only way I could get my head in the head rest was to push myself up on my feet which left my hips up in the air. Lol. We were all laughing. In the end 3 carefully placed pillows under my arched body did the trick. The guys that went in search of the pillows said they had to sign a contract in blood to ensure the pillows were returned because they are like gold dust in the unit. Tee hee! 

I won’t go into details of what the procedure was like because I know some people would find that difficult. For anyone who is having cataract or lens replacement surgery, please don’t worry. It’s a painless procedure. The drops really numb your eye and you don’t feel any of the fiddling. Instead you are given an amazing light show as you lay there. It’s like lasers flashing across the sky in swirling patterns instead of straight lines. It was quite nice for me as I like light in the darkness. 

When they’ve finished you have a patch put on your eye then a shield on the top of that that has to stay in place for 24hrs. Then they slowly sit you up. Next the nice chap assisting in the operating room walked me back to my seat. I had to take his arm because I was suddenly thrust into the world of being legally blind. My left eye has vision but it’s not meaningful. I see shapes and movement but not faces and details. I see light and dark so can pick my way around if there is a contrast between what’s on the ground and the floor. If it’s the same colour I don’t see it and discovered I will bash into it. 

The journey home was interesting. Maggie is a good driver but I found myself not being able to read the road so I was unable to prepare for speed bumps or twists and turns. It wasn’t the nicest of journeys for me as a result. 

We got in and I put the TV on but couldn’t make out faces yet alone the subtitles. In the end we had Judge Judy on as she shouts a lot so I could hear and I didn’t need to see any action. I also listened to the radio and some podcasts. I operated the remotes by feeling or memory from where the buttons usually are. As I moved around to go to the loo or get something from another room, I moved cautiously. Despite my caution I have a few extra bruises to add to my collection. It was a very sobering and disabling experience. My heart goes out to all struggling to learn to live with sight loss. Mine was only for 24 hours and I don’t want to repeat it. 

I slept well that night and had only the mildest of pain. The next morning Maggie cleaned my eye with cooled boiled water after removing the dressing and then I tentatively opened my eye. Initially it was a bit swimmy and blurry but after a few blinks that cleared and OH MY DAYS! I do not remember not wearing glasses. For the first time in my life I could see clearly. I found it utterly amazing and quite emotional. I could see depth, colour and definition in a way I’ve not seen before. Those of you that have been in a John Lewis Department Store and strolled through the TV section will know how vibrant the TVs seem. They are set on the best settings to show their 4K or high definition settings off in the best light. I feel like I’ve woken up with a 4K eye and am finally living in a high definition world. It’s absolutely incredible. My flabber is well and truly gasted. I’m used to seeing the world contained with the frames of my glasses. All of a sudden there’s no frame and I can see more in the image than I could before. It’s a modern day miracle. I’m incredibly blessed to have such amazing people around me whose skill and expertise help keep me going again and again and again. Thank Hod for the NHS and the fantastic people who work in it. 

So coming right up to date I’m doing my drops X4 a day for the next month. One set is X4 this week, then X3 for a week, then 2 and finally 1. The other set remains 4,times a day. My phone alarm schedule is quite complicated to set to remind me to do all this. Lol. When I go out I have to wear the shield or a pair of glasses to protect my eye for a couple of weeks. Luckily I had some yellow tint sunglasses that my brother-in-law lent me to help me cope with the glare at night. I used them until I popped into Waitrose for a couple of bits and saw they had a small stick of off the shelf sun glasses. I paid the princely sum of £23.50 for a pair of polarising sunglasses. 😎 I was made up. In the past I’ve paid up to £700 for prescription polarising specs. What a difference. Tomorrow I’m off to the pound shop to get a cheap pair of readers. I won’t need everyday glasses going forward but I will need reading glasses. I can live with that. I’m still absolutely incredulous at the transformation and very happy to share this remarkable news with you all. 

I leave you with some of the wonderful things my amazing new eye has seen today. Love and hugs everyone.