I think I'm starting from the right place, I would have updated earlier but you'll find out soon why I haven't.
The Thursday Friday and Saturday things kept getting worse and not just gradually, mouth was a mess and a rash I've got got unbearable, morphine was increased up to a fairly high dose and making me really dopey and drowsy, the whole thing was making it impossible to stay awake for longer than half an hour, never mind if I was actually doing anything like watching TV, completely gave up on reading and social media for a few while, even now I'm still not on as much as I used to be.
Sunday things seemed to reach their peak as I was quite similar to what I was on Saturday, one of the most unpleasant feelings I think I will ever experience, but the morphine certainly helped, I wouldn't like to think how bad it would have been if I wasn't on that.
I've just remembered I think it was Thursday I was getting platelets which I am allergic to so they have to give me peritin first which they did, but half way through the infusion I started to react to it getting itchy feet and hands, remembering the last time it happened I knew it will just get worse very quick so I buzzed the nurses. They whereby exactly on the ball and then they ran off to get the doc without stopping it, so the itchiness was spreading up my arms, back and legs. By the time the nurse came back my throat was starting to close over so she ran out, again without stopping it to speed the doctor up, few seconds later they were back and the infusion was finished, my dad turned up and they told him he couldn't come in, even though he'd seen it before. Throat was just getting tighter and tighter but I didn't panic too much as I knew the drugs they were about the give me clears it very fast. But it came to a stage were I couldn't breathe at all and needed to be sick so clumsily moved to the sink and sat down and it cleared up soon after that. Its certainly something you wouldn't wish on you're worst enemy and a fair bit scary, it's a bit sad that you don't get that worried about it cause it's happened a few times before.
Back to Monday and things seemed to gradually improve, even if it was just slightly looking back but felt like a massive change at the time. Can't remember what day it was but I think it was earlier in the week, but my tongue started to peel, looked even worse than when it just had the coating. But after it had all peeled I have basically no taste and still a bit sore, but on lots of mouthwashes to help it, the mouth was a really big problem over the last couple of weeks but its starting to improve again too.
Tues, Wed and Thurs things were improving each day little by little, but felt like massive steps at the time, as long as it keeps going that way.
The syringe driver was being decreased each day now and slowly being weened off the morphine, I was also having a few problems going to the loo after the catheter was removed, seems like the bladder has shrank and the smallest amount seems as if you've been holding it in for as long as you can and you're really trying to push it out, which isn't great when you have diarrhea, I'll go no further but thankfully there where no mishaps.
Was put on fluids on the sat as my blood pressure was low and I kept on insisting it was with the sitting about and it won't help, but I took it anyway and sure enough the blood pressure stayed low, things still gradually improved a little each day and come Monday I got the syringe driver removed and had started back on the bike a couple days earlier, was out with the physio going up and down stairs and she was very happy with that. My dad brought up some spaghetti hoops and pear haves so I started to munch on them, they were great having something that was eatable.
Tuesday I continued on the bike and doing my exercises and I went out for a bit of a walk with my dad, it wasn't quite as tiring as I thought it would be but was still tired after.
Over the last week been having terrible problems with a breeze in the room, the room is warm but with the way the room works there has to be air constantly pumped into the room to keep the pressure up so air only goes out, but I'm now noticing the constant breeze and with the low blood pressure its absolutely freezing me no matter what I try.
Wednesday came and the news I was waiting and pushing for the last couple of days, going home, they removed the Hickman line which wasn't as bad as I though a few slices and cuts and 40 mins later it was out and a couple stitches and said about getting home tomorrow, can't wait, soon after my dad was up and my mum came up this time too so she got a big hug and we went out for a lovely walk around and then to botanic gardens for a bit of a seat too. Was really nice and don't feel bad at all after, if anything its helped with the temp in the room, doesn't feel quite as bad, as I sit with a hat and coat on with a blanket round my legs.
So tomorrow, home, can't wait.
Still a long long way to go though, but I think/hope the hard part is over.