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. 

Disability Discrimination

Hello everyone. I need to offload a bit so this is a different sort of blog for me. 

I’ve been loving the football in #euros2024 Regular readers of my blog will know I used to play football quite seriously. It was the fact that the defenders were catching me up as I ran down the wing that was my first clue that something wasn’t right. This ultimately led to the blood cancer diagnosis and the ongoing complications I still have to this day. None of that dents my passion for football. I love all the international tournaments and as you’ve seen, I have the football shirts to prove it. 

You can’t imagine my delight when I won two tickets to see a Euros last 16 match in Frankfurt with #coca-cola plus £1000 towards expenses. 

After the excitement wore off, I started to get slightly anxious as I’ve not been on a plane since well before the pandemic. Planes and public transport are very high risk when you don’t have a working immune system. To explain this in simple terms, I needed to have a stem cell transplant to hopefully cure my rare blood cancer Myelo Dysplastic Syndrome. The treatment for this and added complications means I developed hypogammaglobulinaemia. To translate that means certain white cells are permanently low and I don’t produce antibodies to fight infection. I’m very lucky to have my IVIG once a month which gives me antibodies collected from generous blood and plasma donors. This will be for life with current medical knowledge. I’m of course always hopeful that in the future something will change. 

All of the treatment I’ve had has left me with multifactorial disability issues such as:

Compromised immune system

Muscle weakness

Breathlessness 

Constant pain 

This means I walk with a stick really short distances. For anything else I use a mobility scooter. It’s small, lightweight and compact, just like me! I don’t use public transport as a rule. I shop at quieter times. I wear a mask when inside while I’m out and limit my activities to not be in interior crowded places. These limitations have all been since the pandemic and have become a way of life after 4 years. 

When I entered the competition, I wasn’t asked to declare any disabilities. I’ve not heard back yet from my enquiry to Coke about whether they can accommodate my request for accessible tickets into the stadium in Frankfurt. As I always live in hope I decided to book a flight and accommodation. 

I wanted to fly from London City Airport as it’s very near to me so hardly any public transport needed. Also it’s a small and less busy place unlike Heathrow which I think is just too risky. It said on the webpage to ring if there was any accessibility issues. Maggie rang and was told it was no problem and to book and then fill in the special assistance details in the “my bookings” part of the app. We booked good flights and a lovely hotel. When we tried to fill in the online info for the mobility scooter we couldn’t input the data. The form states that it’s for wheelchairs, scooters and mobility aids. My problem was the accessibility device couldn’t be longer than 104cms. In frustration I rang the accessibility team in Newcastle. I said it was a really small scooter but was told there may be a problem as they only use small aircraft from City. That to me is a failure of the booking system. Maggie rang before booking and was given the wrong advice and then the website lets you book saying scooters are ok then you find out this isn’t the case. I’ve now asked the accessibility team if the scooter is broken down, can it be taken? I also asked if they could hire something for me for the trip because f mine wasn’t possible. I’m desperate. It feels like disabled travellers are not able to use London City Airport with BA I’ve psyched myself up to take this risk. I’ve put a plan in place to minimise my risk as much as possible but I’m being given obstacles at every turn. 

I now have an agonising wait till Monday to find out if British Airways can accommodate my special needs. I hope also to hear from Coca Cola by then too. 

Winning a nice prize shouldn’t be this difficult! I’m shocked how the Disability Discrimination Act is still not being met in full. Please send me lots of positive vibes to see me through this quagmire and hopefully “bug” free out the other side

World Blood Cancer 2024

 

Today is World Blood Cancer Day so an appropriate day for a blog from me. 

The four big cancers; breast, lung, bowel and prostate are all well advertised and most people could tell you a main symptom from these cancers. For example the following are all mentioned in tv ads; lumps, a persistent cough for more than three weeks, blood in your poo and frequency or trouble peeing. There are of course many more. 

Blood cancer can be insidious in the way it creeps up on you. Would you know what the main symptoms of blood cancer are?

Night sweats

Fatigue

Breathlessness

Bruising

Repeat infections

Unexplained weight loss 

Lumps or swellings

We can rationalise these symptoms as being stressed, having a virus, being run down, menopause and a whole host of other things. GPs can miss these symptoms sometimes because they are so non specific. When you think about it, your bone marrow is the building block from which everything else flows from. Blood goes to every inch of our body to keep it going. So when the marrow fails and the blood going round is a bit off or a lot off the symptoms are going to be broad ranging. A simple full blood count blood test will yield vital information. If you have any of the above symptoms please ask for this simple test. 

When it happened to me I was a fit young football playing woman with a young family and a responsible job. I noticed I wasn’t running as fast down the wing as I used to. The defenders were catching me more often. I’d be breathless and exhausted all the time. I could also bruise more easily. I just didn’t feel right. I went to my GP and she asked me to have a blood test. 

The next day I was sitting at my desk in a corporate housing office when the GP rang. She questioned how much I’d been drinking and then asked me if I was lactating. I was shocked. For those unfamiliar with the word it’s when you produce breast milk following a birth. I laughed and said did she have the right patient. She said yes and I said “but I haven’t had a baby” She told me that my prolactin was very high and my red cells were very large. She asked me to repeat the blood test. It yielded the same result. Next she sent me to an endocrinologist and he prodded and poked me for a couple of years. Lots of my endocrine results were slightly off. He sent me for a brain scan thinking I had a pituitary tumour. That all proved negative. Eventually he admitted defeat but said the one consistent result was the large misshaped red cells and a low grade anaemia. He then packed me off to a haematologist. 

The haematologist scratched his head and after a while said it was a possible MDS (Myelo Dysplastic Syndrome) diagnosis. Eventually he sent me to the specialist team at Kings who are a centre of excellence for this rare blood cancer and they gave me a definitive diagnosis of MDS. It took years to get to this definite diagnosis. I always say I’ve been dealing with all this for 24 years as it was in the year 2000 that Kings told me I had MDS. The truth is it was rumbling away a lot longer. I remember in my early and mid twenties being asked by the GP if I was drinking too much as my red cells were large and misshapen. This can happen with too much alcohol. However I am a disappointment to the alcoholics in the family. One and I’m anybodies, two and I’m everybody’s. Lol. I just can’t take it. It turns out that macrocytosis is also a possible sign of blood cancer. 

When I was diagnosed there was scanty resources available on the internet. It was fairly depressing and scary. I learned that people on average live 2-5 years with MDS. 

The following week after my confirmed diagnosis, I went off to my selection process to see if I’d be a suitable candidate for training to be a priest. It was a four day residential interview putting through your paces. There were IQ and EQ tests. There were observational activities where you’d have to chair a meeting or make a presentations. There were individual interviews plus panel interviews. It was all very intense. Of course in between some of these activities I would wander around the ground wondering if the 2-5 years prognosis would apply to me. 

I was amazed to get through the selection process and I was recommended for training. I’d been arguing with God for twenty years that She must be joking. When I first felt a sense of vocation, women couldn’t become priests. Also there certainly weren’t any working class, lesbian street urchins who didn’t do books! Lol. I left home and school so early I never developed academic skills. 

Being the feisty woman I am on the inside I decided to take the challenge of training. The process is a long one for priests and deacons. There’s a couple of years of discernment before you even get to the selection process. The theological academic training course is either two or three years.  As I don’t even have an O level to my name I had to do the three years. Also I chose to do the training part time so I could continue to raise my young family and work to support them. Once you pass and complete these academic rigours, you then have a further three or four years of training where you learn your trade as a curate. After that you may go into parish ministry or some kind of chaplaincy. As you can see it’s a big commitment. So it was my way of saying “up yours” to the MDS and the implications. 

I worked full time as a priest all the way from the end of my theological training in 2003 to 2016 when I had my transplant. There were numerous hospital admissions over those years and some really near misses with sepsis on several occasions.  In 2016 it was decided I need a stem cell transplant after a particularly bad bout of sepsis. My sister came forward for testing and proved to be a match and my life was saved by the brutal process of the transplant. I still live with the effects as I now have many chronic comorbidities but I’m still here and still breathing. The cancer is in remission and I’m learning to live with all the effects. 

As you can see I had a good quality of life with some serious dips all the way till 2016. That’s a lot better than the 2-5 years I saw on the internet. And now I can add another eight years to that. To those of you who are newly diagnosed remember that what lays before you is nothing compared to what is inside you. If I can get through all this, so can you. There is much better quality information on all the blood cancer charity webpages. Do check out the facts from the experts and patients and use these reliable sources rather than Dr Google. There are also some fantastic patient advocacy and support groups. Please use them and stand on the shoulders of the giants that have trodden this path ahead of you. 

Today I may be a bit broken and battered but I’m still able to give and receive love and receive and reflect light. I believe the more light you let in the brighter your world will be. For all of those struggling, I’m holding you in the light.