Sunday, 12th January
Another pitstop
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.Monday, 6th January
Let’s get started, again
I guess a happy new year is in order, but before then I had my chemo, bendamustine on Monday and Tuesday, there were no issues with it and it only takes about 30mins for this one to go in. The bendamustine from what I have read seems to set a marker on the cells that need to be destroyed and then your body and obinutuzumab target these cells and destroy them.
The counts haven’t particularly dropped with getting this and am still able to function pretty well. The best part is I don’t need to have peritin with this one which I initially thought I did and I was able to read and focus on things rather than being drowsy and falling asleep all day.
That was all grand until Wednesday morning when I started getting a tingly sensation, similar to one I get when the platelets are low or I’m coming down with something. This lasted all day and was just gradually getting worse and a sore head too and generally starting to feel unwell. My tummy was also playing up, I didn’t think it was anything to do with the chemo to start but looking back it probably was, although the tummy might be to do with eating so much of late, I’m still not 100% sure on that one.
My temp never properly went up on Tuesday only into the 37s until the late evening of course as normal when the doctors are all away. The procedure is to take blood cultures and start on antibiotics, but when giving me the antibiotics I started to feel funny in the head and raised the back of the bed, heart started to pound and race up to 140-150bpm and then my hands got tingly and itchy…
I’d experienced reactions like this before with blood products but wasn’t expecting it to happen on an antibiotic that I’ve had about 7 or 8 courses over the last 3 months. Thankfully the nurse was with me at the time and the doctor was still around to prescribe some peritin which done the trick to settle it and with them being there it was sorted quickly. The whole thing seemed to make my head more painful, better than the alternative though. That night the temperature wouldn’t go below 38 as I’m still only getting the half dose of paracetamol and it wasn’t until the next morning around 6 or 7 that it finally crept below 38.
The antibiotic was changed to another with no reactions, it’s over a 30 minute period whereas the other is given as an injection. I feel like it was given too quickly which is what caused it, it’s supposed to be over about 5 mins, it was more like 30 seconds.
The Thursday I picked up on the feeling like something was coming on and the tingliness settled but my tummy didn’t, (Stool talk the rest of the paragraph) I’ve had IBS and stomach lesions a fair few times before and was very like that hence why I think this was caused by eating too much rather than the chemo. I’d been having diarrhea for a few days but the doctors never told the nurses and when I mentioned to them they wanted a sample and of course, I don’t go for the rest of the day. When I did there was a lot and solid, then another not quite as solid and then another which they thought was soft enough to send off to get tested. It was just getting more and more fluid-like until it was basically water. What was passed probably about 3 days worth, which eased the tummy a bit but then I was constantly running to the loo.
Friday morning I was told that I’d be moving to my own room, mostly precautionary but with another rotten sleep and the beeps, snores and now talking in their sleep I was happy enough with this.
Oh yes, also on Thursday my blog was locked due to violation of terms, they never informed me of why or what I’d done for this to happen nor did they even tell me, it was one of you guys that told me about it and I wasn’t able to access any of the posts or view the pages. I wasn’t overly keen on losing any of this as it has been going for over 6 years(with a break in the middle). I appealed and it was restored the next day, it was a warning shot and so I’ve downloaded all the blogs and made backups of them.
Most importantly of all, it’s gave me a new project to add the blog to my own server so that it can’t be removed and I can’t violate terms of service, only issue is downtime and it will be a bit slower, but I don’t mind that.
Back to Friday, I’ve been moved to the luxury ensuite room, the windows point out the West side of the building looking both NW and SW, so far in my stay I’ve only been looking NE on either the East or North of the building so new scenery. The room is massive compared to where I was, but I’ve barely moved from the bed or toilet.
Friday and Saturday my tummy continued to play up. They took me off the antibiotics to see if I was still getting the temperatures and to check if my stomach would settle and on Saturday I got the all-clear of any infections and could get tablets to try and help. My stomach was also making me feel nauseous so I was given tablets for that but they can make you constipated so a double-edged sword. I pondered for a while before saying I’ll go on them but would probably be better if I wasn’t.
Sunday I was working on the new blog, it’s got the essentials there now and all the older posts which is more than ample. My stomach seems to have been pretty good today and everything was all pretty uneventful. I was allowed to leave the room again today, I had planned to go for walk around the hospital but that never happened and the later evening my stomach started to get pretty bad again, a laydown and a wee trip helped and got more tablets for it too.
And here I am at 4am typing this, not tired though, but I know I should at least try to sleep. Tomorrow… today I’m getting the obinutuzumab and will have peritin so I expect to be sleeping most of the day anyway. One doctor had said something about getting an extra dose of something but I didn’t really hear and the other said about possibly not (at different times), I’m more keen on getting the extra butI don’t know the full effects so I’ll take their advice before mine.
Until next time *nods*