Today, however, marks what tentatively feels like a turning point. A combination of drugs, mouth washes and well, just riding it out, has started to see me improve.
I had the usual visit from my Mum on the 27th but turned down a coffee. I was in constant pain with my tongue and talking was a huge effort, so we just sat in each other's company a while. Sometimes that's all you can do.
I had a visit from a new Doctor who seemed really "on it." She sent for loads of tests, arranged a CT scan and arranged more blood and antibiotics for me. Thanks again blood donors!
There were constant transfusions and antibiotics throughout the night. My mouth was constantly filling with saliva, I couldn't swallow and could no longer drink any water.
Doctors visited the next morning (the 28th) and explained the infection, while nasty and uncomfortable, was quite a normal response. They came up with a plan to get fluids, treat the virus and alleviate the symptoms. There's not much to say other than it was uncomfortable and one of those days you just try and get through. My incredible partner came and sat with me while I did just that.
A disastrous attempt to take my chemo tablets in liquid form had lead me to start dreading any further attempts. On the 29th I thought this might be coming. Fortunately, the Dr reassured me this wouldn't be happening and he spoke about referring me to the palliative care team. Although they normally deal with end of life stuff, they have a few tricks up their sleeve when it comes to managing pain. I started to receive my morphine through a syringe drive attached to my arm.
So to today, I've actually started feeling a bit better. I had my first shower in a few days which felt amazing. I now have to put a bag on both arms though! Oh... and my hair has started falling out. Hopefully the tash will stay as some form of minor compensation. Doctors have visited and said treatment of the APL is going well, it's the symptoms that are the issue. Her feeling was very much "this is as bad as it gets" and that was good to hear.
The dietitian visited and the alternatives to not eating sound grim. I need to get back on the Fortisips!
A friend from work performed a "flying visit" and dropped off the gift for my Daughter. Within the bag was a mysterious envelope which, it transpired was completely unrelated to all this. The Mother of a young lad who killed himself had taken the time to write to me, tell me a bit more about his life and thank me for supporting her. It was a morale boost that came a completely unexpected direction.
My little girl walked cautiously into my room, still in her school uniform, at about 4pm. I'd got the gift ready and threw a few other surprises in the bag. It was amazing to see he for the first time in 11 days, the longest we've been apart. I made sure it was fun and she had games to play and stuff to do, despite me having to keep a bit of a distance. The visit gave me a massive boost.
I know, deep in my bones, that one day I'll be scooping her up in my arms again. And in that moment, it will be like this never happened.
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