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 rand 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 the 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. Al 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 as 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.
