Filling the Gap 2

Hello Everyone,

This blog starts where the last blog left off. For those who haven’t read it a very brief synopsis is that I went into hospital for a routine day case surgery. I was kept in overnight as I had virtually passed out and I as in quite serious pain. 

My long suffering partner Maggie said good night to me around 8.30pm and that was the last thing I remember for nearly two weeks. 

When I came to, my perception of reality had changed. I had been kidnapped and taken away from all who knew and loved me. I was being held captive and

being tortured by the Russians. This torture took various forms including: being branded with a hot iron, having a snarling slavering dog bark in my face. It was barely contained on a lead. I also experienced my stepson and great nephew tell me that I killed a child when I was a child and that my gender was changed to protect my identity. I was born a boy and transitioned to a girl. My two brother-in-laws were stabbed but we’re not allowed in. There was bombs and flashes going on outside and sounds of rioting. I was told I was in Kings but I knew it was the Russians because it didn’t look like Kings. Two of the worst tortures involved being rotated in my bed into a pool of water under me and just when I thought I’d burst from lack of oxygen, I’d be brought back up, gasping for breath. The other was being sexually abused in front of an audience. One nice thing that happened was a neighbour and friend of mine had been negotiating for me and looking for me. He and a delegation found me and came to see me. With him was my niece who lives in Canada and is a physio and Sam Kerr who until recently played for Chelsea women’s team and was the Captain of the Australian national team. They promised they would get me out of there and were working hard on my release. These experiences went round and round ALL THE TIME. Sometimes there would be a new experience. I was often driving the car but couldn’t reach the break pedal and was driving round country lanes and scrapping through tiny gaps or crashing into the hedgerow. I was being terrorised 24/7. I started punching or kicking anyone who came near me. I was utterly terrified. I became aware that I had a tube in my mouth  I wanted to pull it out but my hands were totally wrapped up  

One day when the torture had been absolutely intense, I noticed my hands were free and I pulled the tube out of my mouth. My nose and throat really hurt as a result. I was really struggling to get up but I couldn’t move  I remember Maggie holding my hand and making me look at her  she said to me “Kes, do you remember, you came into hospital for an operation? One of the clips came away and you got sepsis. You’ve been in intensive care and on life support for two weeks!” With that, my delirium was broken and I started slowly piecing together what had happened to me. I listened with horror as my loving partner and sister and daughter explained what had been happening to me. They also said I’d been punching all the nurses and doctors. My beautiful daughter explained that I punched her so hard, she stumbled back into her partner  when I was more with it, she said to me “You never did that to me as a child, it was a bit of a shock” it was a shock to me too  I’m a pacifist and wear a white poppy but there I was, when I felt attacked, defending myself and lashing out  I reverted to my early years and my street itching days.

Once I was awake properly, I didn’t sleep for two days. I think this was multifaceted. I don’t want to go back to that world of terror and I was also in a highly anxious state. This was a new experience for me. Maggie would hold my hand or rub my leg and my sister would run my head in a bid to get me to sleep  it was to no avail initially.

Then the doctor came and talked to me. He said I had to be put back to sleep and in the ventilator again as I was deteriorating. He said they needed to drain my lungs because they were filling up with fluid. I also had a collection of pus in my stomach that needed draining too  I didn’t want to go back on the ventilator but he explained I really needed it. I asked him would this kill me if I didn’t and he said yes  I was terrified but I’m not stupid. He promised he get me off the ventilator as soon as possible. He was a good doctor and didn’t mince his words. I like that  He was of Spanish origin. The NHS was definitely better for having him in it.

He was true to his word and woke me up two days later on Christmas Day. Later in the day he asked me if I wanted an ice cream. This fantastic doctor went and got me some whippy ice cream in a carton and came back and fed me some. It was the best Christmas present ever! 

From then the slow and long road to recovery began. I’ll tell you more about that in the next blog post. I’d like to finish this one by saying a huge thank you to all the nurses, doctors, radiographers, HCA’s, physios, dieticians, OT’s, psychologist, cleaners and porters. I’ve probably missed some but you were all amazing and saved my life without a date one more time  How can I ever repay that…

Filling the gap 1

It’s been way too long since I wrote a blog. I thought I’d try and get in the knack again and explain more about the long gap. 

During the pandemic I managed to keep myself safe with mask wearing and good hand hygiene. I was still backwards and forwards to the hospital, and did not pick up the virus. 

In 2023 after 3 years of no travelling and no holidays, it was decided that I could travel to Ireland. My family are fortunate enough to have a small house in the Kerry mountains. It’s always been an amazing bolt hole for me. It’s almost like, when you breathe the air there, it fills up more of your lungs. The house is a kilometre or half a mile from the village. The village is remote and 30 miles from the nearest railways station. There is a general hospital just over an hour away and the main university hospital is in Cork which is just over 2 hours away.

Before leaving London, I made contact with Cork hospital as that’s where the haematology unit was. I explained about being immunocompromised and travelling for the first time. They took all my details and hoped I had a lovely trouble free holiday. 

A few days later I started to feel unwell. I did a covid test and to my horror it came back positive. I rang Cork hospital and explained. They rang Kings in London to confirm what I was saying. They then rang me back and said they would send the prescription to the village pharmacy but to leave it a while before collecting to allow the process to go through. Not long after this, there was a knock at my door and my neighbour, who also works in the pharmacy, hand delivered the antiviral medication. It was probably quicker and smoother than negotiating the system in London. I was very well looked after.

My long suffering partner Maggie picked up the virus and Sönke who was with us also had the virus. He probably had it first. Both he and Maggie felt awful and had to go to bed for a couple of days. We also had 2 of the grandkids with us. They didn’t get Covid despite 3 adults in the house being positive. I looked after the kids and got drinks and snacks for Maggie and Sönke and sorted the kids out. When the others started to feel better, Sönke asked me if I was bionic because I just carried on. Lol. I told him I was very used to feeling unwell and carrying on, whereas he and Maggie were usually fit and therefore not so used to doing things when you feel crap. 

Any way for the purpose of brevity the story continued with Maggie and Sönke getting back to normal very quickly. I continued to test positive for Covid for months and months. I had a rotten cough and I had to be seen in isolation when attending the hospital. I finally tested negative in the December, I think. Then a month later picked up rhinovirus which is the official title for the common cold. I continued to to test positive for this for months. I finally tested negative and we decided to go to Ireland again. They say lightening never strikes twice in the same place. Unbelievably, in that small remote place in Ireland, I picked up Covid again. 

Once more I tested positive for ages. I think I spent the best part of 18 months being treated in isolation and not seeing my regular consultant. The constant viral infections played havoc with my chest and has left me with an almost permanent chesty cough. 

On top of this my thyroid was all out of sorts. Unbeknown to me, despite taking Levothyroxine, my thyroid was running consistently low. How it impacted on me is I lost my mojo. I felt really flat and thought I was suffering from depression. This is not something I’ve suffered from before. It was like my get up and go had got up and gone. 

I plodded on but was finding life difficult. I still had loads of hospital appointments. At one of these an older woman noticed my name on the screen. She asked me if it was me who was blogging about life with MDS and the treatment effects? I said yes and she grasped my hand and said she was so pleased to meet me. That gave me the push to write a blog again as at that point I hadn’t for about a year. I started to write a few blogs and the last entry was October 2025. 

On 9 December 2025 I went into hospital for a minor procedure under general anaesthetic. Even though it was a day case, they had booked me a bed because of my complications but if I felt fine, I could go home. 

I remember going to the loo and feeling very faint on my way back. I told the nurse and he grabbed hold of me. He got another colleague to take the other side of me and was yelling for a trolley. The nurse he was yelling at didn’t quite understand and was bringing a chair. I thought it was funny but knew I was going to pass out any minute. They just got the trolley as it went dark for a second. As that had happened and I was in pain they decided to admit me. 

Maggie settled me into bed. She said I was a bit out of it and kept dropping my tablets. She thought it was because I’d had morphine. If only we knew then what we know now. Maggie left that night and that’s the last thing I remember for just over 2 weeks. 

I will continue this unbelievable story in a separate blog as I don’t want to make this too long. 

Thanks for sticking with me and I hope to get back to regular blogging. If I don’t, you have my permission to poke me and give me a kick in the right direction.