https://www.facebook.com/1400712590226152/posts/2265193377111398/
Wow what a start to 2020. To continue from my last blog )click on link above for details) I left the hospital feeling really sick so I took a sick bowl with me. Halfway down a public corridor I started to puke! I was desperate to get out of view of everyone and into the loo but someone was in the first loo. I staggered on to the next one still being sick into the bowl. A nurse asked if I was ok. I said yes in between retching. I got into the loo and stayed until all was out. Sadly I had to chuck my bowl.
I then wandered slowly to the car and braced myself for the hours drive in south London’s rush hour traffic. How I managed to park outside my place I don’t know because I had started to heave again. I lent out the door and was sick on the road. Despite cars and people going by no one stopped to check if I was ok. That is a sad indictment of our society. Please don’t be a bystander. It might be your mum or nan that needs help. As it was, my ever vigilant partner looked out the window, noticed me and came out of the house to help me and sluice the road down. What a job.
I continued to throw up all night. I was desperately thirsty but couldn’t even keep sips of water down. I then tried some ice chips and even that came straight back up. In the end I just lay there feeling absolutely wretched. I tried to concentrate on my breathing and hoped that each breath may bring some relief. Sadly relief was in short supply.
I contacted my team at Kings to explain I felt rubbish. This is where the CNS’ come into their own and smooth communication and act as a bridge between home and hospital. They asked me to come in for a review as for two days I’d been unable to take my medication or much food or drink. Once at the hospital they took some extra bloods as well as gave me some fluid. I also had an urgent CT scan of my abdomen. I must be so full of radiation that you can probably see me from outer space. Lol.
I saw a new registrar. She was lovely and very bubbly. Another great addition to the team alongside the new consultant. She didn’t know me though and wouldn’t have been aware of how unusual this was for me to be so rough. She asked me to start taking my meds again the next day. And come in for another review a couple of days later.
As I started the meds so I started to feel really off again. I wasn’t even able to have a conversation with my partner. All I could do was just sit really still and hardly move in a bid to get my stomach, which was like a washing machine, to settle.
I went back again for my next review and found out that my kidney function was off as was my liver function. Also the thickening in my duodenum was still apparent but stable and also it might be that I had an infection in the bottom of my lungs. My infection and inflammation markers were raised but not significantly. What a crock of shite! I had more bloods done and waited for the results. The registrar was thinking I needed to be admitted. I said I would be ok at home. I would come in if needed but it’s best to stay at home if possible.
The latest results were an improvement for having not taken the powerful immunosuppression drug which is relatively new to me. I had suspected it was that causing the problem. I saw the lovely registrar again and she told me I could stop the Sirolimus. However she wasn’t sure it was that and said it could be the GvHD (Graft Verses Host Disease) or an infection. Time will tell.
The Registrar just phoned me. She is lovely but she wants me to start taking the sirolimus again in a lower dose. Either one every other day or half the dose day.
I think I’d rather wander the streets of Woolwich in a tutu than risk going back to feeling so unwell. It’s very difficult to describe to people what it’s like when even a slight jolt brings on a wave of nausea. Just breathing can create a tsunami in your stomach that is in danger of leaking out of every orifice. I have always maintained I don’t mind being this sick and disabled. There is nothing special about me that means I should be spared from any suffering. That said I really hate it when I feel so sick that I can’t interact with the world. I try to keep all things in balance. I always say life isn’t just about me and my illness. I liked to have an outward focus. Those close to me know when I’m not well. I retreat into myself and just try to still myself physically and emotionally. I go off radar on social media and find writing even this blog impossible. I will do anything to avoid feeling like that.
On the other hand I’m normally very compliant about taking my medication and I hate saying I can’t cope to my team. They are such a fine bunch off women and men and try their best for me. The least I can do is accept their advice. On this occasion though I just don’t want to risk going backwards. I feel rough enough as it is without chancing to make it worse.
So 2020 hasn’t started well. I’m determined it will finished well though, so for now and I hope not too long, I just have to grit my teeth
