On Tuesday the 1st of July I got a call in the late afternoon to tell me there was a bed ready for me to take, I would still be waiting until Thursday to get the Hickman line in but at least I would be guaranteed the bed after. I got was well prepared for the short notice so grabbed my bag and a few other things and I was ready, we left it very last minute and rushed to have dinner which ruined it a bit and was putting some people on edge, but I got to hospital at the later time they wanted me at and got booked in and settled, this will be my home for the next while... not too bad.
First thing I checked was if the TV had an HDMI slot for the nowTV box, initially I didn't see it but after another inspection there was one, just need the WiFi code now. On the Wednesday evening I went out for a walk and watched the bands st sandy row, it was short and sweet, then returned to hospital.
Next morning I got the Hickman line it, which was similar in a way to getting the gland removed from my neck too, after it was a bit tight but that was mostly the dressing. It was very very itchy with what I worked out later to be the folds in the dressing than anything else.
Got the WiFi code and stuck it onto my tablet(I got a new tablet) the reason I got this one (Microsoft Surface RT 64gb) was that it had a USB slot so I could have my films all on drive and run them. NowTV didn't work on the TV as the box didn't recognise the type of security it had, so I got my dad to bring up the kindle fire and I'm able to watch lovefilm. Entertainment wise I am well sorted.
So from getting the Hickman line in on Thursday I wasn't allowed to leave my room and started the chemo in Friday, was a little nauseous and by a little I mean about a minute if even. Had no other problems as they continued on through the week, the only problem I had was with my tongue which kicks off very easily, they said with it starting so early(up to a week early) that's its going to get really bad. The week went on and as I was getting more chemo the cough that I've had has died down considerably. Mouth gradually getting worse even with all the mouthwashes and cleaning my teeth so much.
Chemo all finished on Wednesday, generally the chemo wasn't too rough at the time but the next couple of weeks will be the worst when the counts all drop and I'd have no immune system. Thursday I got my stem cell transplant and introduced to my favorite nurse. She either thought I was thick or she thought that about everyone, but she kept getting air stuck in the line and didn't take my advise on how to get rid of it, which she ended up accidentally doing and clearing it. Once that was done, didn't take long at all I was a quite tired and I think I dozed most of the day.
Friday went ok but my tongue was still getting worse and similarly on Saturday, on Saturday they started me on oxynorm(morphine) a small dose so it was a little syringe and fluid you washed around your mouth, and my fn(favorite nurse) was saying not to take that take paracetamol instead, I initially listed to her and done that, but later the other nurses were saying to take the oxynorm and so I did.
The next day the doctors put me on a syringe driver with oxynorm in it so its a constant flow of pain relief rather that peaks and troughs. In the morning I was starting to brew a bit of a temperature and one of the nurses wanted to keep an eye on it, but then my fn takes over and the docs said if you are in pain ask for more oxynorm and then we'll get a better idea of what to increase the dosage in the driver. But when I said to her about the pain she said she was very reluctant to give me the syringe driver and didn't want me overdosing on morphine and persuaded me to take paracetamol as the extra instead.
It wasn't until after I realised wait a second she wasn't going to give the the drugs the doctor ordered me to have! And with having the paracetamol it will have masked the temperature too! After that I just too the oxynorm and sure enough during the final of the wold cup I started to get a fever and had to get all of the tests done, stool, urine, throat swab, line sample, blood samples, you name it I was weak most of the night with that and really felt terrible, my tongue is also getting worse still and is pure agony at time, I can eat anymore and any flavor at all on my tongue is just pure torture. They believed the fever may be coming from the mouth problems but they need to make sure and started me on antibiotics.
Monday they increased the syringe driver which was fine, if it helps take the edge off the pain great! I said to my dad about my fn and her trying to run the place rather than doing what she's told and she was setting up the syringe driver when the doctors were in talking about it and I made sure she heard me asking about the morphine and them saying take it and we can adjust the dosage in the driver. Apart from the pain and asking for oxynorm and getting it from another nurse all was good until, another burse came in and said that she was told that the driver was broke and it was going over 25hrs instead of 24, it had already been running for over 3hrs and so had a certain volume missing and I thought the nurse would have taken this into consideration and set it over 21hrs, I wasn't happy with the new rate and said to her that that rate is less than the rate that was over 25 hrs and its weaker than what it was earlier, she said stuff, she didn't know what she was on about. After she left I had a look at the machine and it was set to go over 24 hrs even though there had already been 3hrs used. So I buzzed and another nurse came and that the previous one had screwed up, so this is when I was told the 2nd driver was broke too. It wasn't it was just stupidity in setting it up, but they went and got a full syringe and started the driver over to I was getting the proper dosage, this is when I was told that the boxes only go over 24hrs and the nurses can't change that, so when my fn said to the next nurse about it being over 25hrs was bull and that she was told to reset it with the new driver was just a way of reducing the dosage. So the next day I said to the doctors about her taking my pain relief into her own hands and basically refusing me my prescribed drugs. Later the ward Sister came and I told her all about it and she wasn't happy at all with it, she is being kept away from me and getting spoken to on Thursday about her actions.
Monday night was another rough night, next to no sleep running to the toilet and having fevers and the agonizing tongue, I'm quite good with pain but this is on another level than anything I've even encountered and due to only get worse for a few more days too.
Tuesday my dad helped me shave my head and face as my hairs had started to fall out again, not that there was much there but its completely off now, been constantly taking oxynorm along with an increased dose of the driver and its still getting worse!! The counts are now rock bottom and things can't get anymore dangerous than now hopefully the counts will start going up shortly and everything starts to get back to normal.
Another sleepless night tonight (tues/wed) and I'm surprised I've been able to finish this, mouth still really bad and still having fevers, they're changing my antibiotics today as the others haven't worked and probably increasing the driver too.
Don't really want to put up a pic of my tongue cause it looks as sore as it feels! And is right down through my whole digestive system.