After finally getting to sleep on Monday morning and having breakfast I got the news that I would be moving to a new bay… again. This new one wasn’t great and probably the worst bed location that I’ve been in since going into hospital. It was an ‘L’ shape and I was right at the top beside the door facing the toilets and felt like I was more in a corridor leading up to the ward as everyone had to walk past me.
Saying that looking back it wasn’t as bad as I had initially thought, I was right by the door and the toilets and out of the way enough to avoid small talk and was able to just get on with my own thing.
The doctors didn’t come round till late, the time I would have been expecting to get the Obinutuzumab and they said it would be too late to get it now and we’ll do it tomorrow. They had woke me up and I didn’t quite have my whits about me to ask why I wasn’t getting it today, I have the feeling that as it was the doc that wasn’t overly keen on getting the two doses had possibly just held off so I was only getting the one. Anyway, they know best and I’m sure there was some reason behind it.
I did get the chemo on Tuesday, the peritin, as usual, whiped me out for long enough but I was still able to manage to get for a bit of a walk that evening. I didn’t have any side effects from this one but the doctors are expecting the counts to begin to drop over the next couple of days.
Wednesday and Thursday nothing medical orientated happened and just a waiting game again until the next treatment, I went out walking around the hospital, watched tv and football. I always wear my headphones when in a ward with others but the guy beside me didn’t really have much hospital etiquette, his visitors kept on sitting within my curtain space even though the other side of him there was plenty of space to the window for them to sit in and they left their seats there which interfered with me opening my drawers. In the ward there are also 4 cupboards and he was using two, why should he get two, what if I wanted two? What about the other guy did he want one? It annoyed me more than it should have, but despite being in hospital for so long I didn’t have too much with me and didn’t need one nevermind two.
The thing that did bug me the most was the tv, he took over the airwaves with the tv, the first day he turned it on and it also turned on my tv, I turned it off and again mine came on, every time he changed the channel or turned his on it turned mine on. I don’t use the tv so I asked the nurse for a stick to turn it off at the plug on the roof.
I did come up with a bit of a plan to amuse myself, the tv annoyed me and the other things but not that they actually annoyed me, it was the lack of manners that annoyed me, so with the tv every time he went away from his bed to the toilet or to get something I kept gradually turning the tv up a bit. I had planned to turn it on on him when he had visitors but I never made it to that point, he picked up on it when I was in getting washed, where I could hear it clearly as it was now at a level that was way too loud, he turned it down, way down. So in a way, the plan worked, not quite how I had expected but the volume was down. It gave me a chuckle anyway.
I did notice a sensation at the back of my knee similar to when I had the clot last year and got it checked out but it was grand and the clot I did have is all clear again too, it was the same person that done the check for the previous one and told her that after the scan the pain in my leg went away, whatever she had done seemed to clear or help with it.
Friday morning another day of nothingness, until the doctors came had the usual how are you, grand, any issues, nope, anything you want to say…
Then a bit different from normal I said: “I’m getting frustrated, not with the care or medication just this the sitting around doing nothing, this is normally the sign that I feel I don’t need to be here.”
She agreed, the counts were doing well and that she would make a few calls and see about getting me out this side of the weekend. When I thought about it that would mean today? And sure enough, she came back and said that everything is getting organized and will be getting out… today.
It normally takes a while to get the tablets all sorted and district nurse organized to clean the PICC line too but by about 6 I was out the door, just like that. It was good to get out but I’ll probably start to get bored now. In hospital you know exactly what I can do and that’s what I do but now outside I have a lot of things to do and too much choice and not know what to do with myself.
Food is initially really a priority, I just want to eat nice stuff I can taste, next is getting my fitness back again, I went up my first flight of stairs since the start of November and my legs are wee skinny things with nothing but skin and bone so I’m quite keen to build that up again and start getting into the walking again, it’ll take a while but I know what I am capable of and know not to push things.
I’ve got a couple of things as incentives for myself to go walking, got a new Fitbit and a GPS tracker that I’ll be able to get back on to a project I had started before but had to put it on hold as I wasn’t able at the time. Maybe more on that in a few weeks. Also depends on the weather too, I have an exercise bike for when it’s a bit rubbish outside and I finally get home home.
It’s been 109 days since I slept in my own bed and lazed in my own house and hopefully, it will be soon enough before I’m back there, but for now, being out of hospital will be good enough.