The next visit to the hospital was on Thursday, I was up at the clinic first and then round to the treatment room later to get the chemo. In the clinic it all seemed very slow, slower than I remember it being before, albeit a few years ago but slow, seemed to take longer to get the blood taken, longer to get the results back and longer seeing the doctor. Even getting the bloods taken was longer, there was no record on my notes that I had a PICC line and so they needed to get another nurse to come and take my blood rather than the ones there which maybe took half an hour I dunno, I seem to have lost all concept of time.
The doctor was unsure whether to go ahead with the cough but I said I was willing to but he needed to speak with my consultant to make sure she was happy to go ahead too, which again added time. I was told to come back for about 1230 or 1 so I went off into town for a while, had planned to go to the bank but by the time I got there and the time it would have taken there and to get back I would have been late so I skipped the bank and just went back to hospital and waited longer again as the drugs weren’t there yet.
It turned out that they had planned on giving me both chemo drugs today Bendamustine(30 mins) and obinutuzumab(~4hrs) but was now so late there was no chance that there would be enough time to get the obinutuzumab, it was now later than 2 weeks ago when they decided to go on the next day. They went ahead with the premeds and I was able to get the bendamustine ok but while they were checking the flow of the PICC line in between infusions they couldn’t get any blood back and so within 30 mins the Picc line had blocked up. Nurse said she had never seen anything like that before. In a way it was a good thing, would mean I definitely wouldn’t be getting the 2nd chemo today and will definitely get the full amount tomorrow, pitty they gave me the premeds for this one and will get them again tomorrow.
Went down to x-ray to make sure it was in the right place again and then the fluid in the pipe for half an hour, with it being during the day the doctors were there and so was a lot quicker than the time before it screwed up. This time the line didn’t clear with the first attempt and had to wait longer, can’t remember if it was 45 minutes or an hour and 30, think it was an hour and thirty. By this stage they had to move me round to the ward as the treatment area was closing. After the amount of time, they checked again and this time blood came back and was able to go home.
While I was in the treatment room my consultant came around and had a word with me and I was quite sure she said I had another 21 days until the next treatment after the ones I was getting over the next couple of current days but as I was on piriton I was a bit confused by this as it’s not how I was told or how the previous cycles were although it was 2 weeks condensed into one I feel like I’m missing out on the 3rd week of Obinutuzumab. But they obviously know what they’re doing… or at least I hope so but they did lose my consent form for getting the treatment and I had to sign a new one… rereading that one of the side effects is death you sort of hope they do know what they’re doing.
The following morning I went straight to the treatment room and somehow had to wait a couple of hours before they started with the premeds, The drugs were there the day before so I’ve no idea why I had to wait so long but I got the chemo I was due the day before and then the 2nd dose of bendamustine. It took up the full day again think it was near 4 I was leaving at, don’t think there is much of a chance of getting the 2 chemos and seeing the docs that morning, although I am getting the bloods taken by the district nurse on the Wednesday, the day before going up.
Another quiet weekend avoiding people and taking it easy. The following week I started a bit of walking again and getting out of the house a bit more again. By Friday I decided it was time to push my limits a bit more and that I was going to use the electric bike and go to Comber, just outside Belfast for the first time since September and maybe even August, 16 miles in total but it was the electric bike but still an accomplishment.
The following day I woke up and was grand had breakfast and was just watching tv, had a few aches and pains from the cycle the previous day but nothing too bad, of all places I was sore I wasn’t quite expecting muscles in my back to be sore.
All of a sudden I just took a really bad turn, I got really tired and had to lie down and shortly after that my mouth started to water, the way it does when I’m going to be sick and so ran to the loo just in time for it to come out, there was quite a lot. The only thing I can think caused it was overeating and the granola not sitting right and causing it, I’m not sure though I only stopped the anti-sickness tablets a couple of days before, maybe they were actually doing something. Whatever it was it put me out of sync the rest of the day and the following day too, although the weather was to be poor so wasn’t going to do anything anyway.
Monday I was up at normal time and got the projector set up in my bedroom so I could lay on and either watch tv or play on the computer. I played the computer for a bit but had an idea to get out on the bike again for a while before the weather turned at about 10… seemed to do the opposite though when I was out on the bike for an hour in total, it rained, was windy, all-round pretty miserable and when I get home to relax the sun comes out and ends up looking like a pretty nice day.
Tuesday again I got up about 8 and had breakfast, my plan was to tidy up the box room and get rid of a load of unorganized mess, but the sunshine got the better of me, I needed to get some cable ties and cycled down to B&Q on the way back the clouds came in and the wind increased. It was a full-on blizzard and it was battering my face which was thankfully covered and there were a few bits of snow/sleet that hit my skin and it was like a pin digging in, I also wore the wrong gloves, I was wondering why my thumb and forefinger were so cold compared to the rest which were slightly less frozen, turned out I had my camera gloves on that I have those two fingers cut off so it’s easier to use the camera.
Once home I had lunch and stuck on some documentaries and updated the previous blog and wrote up to here but waiting a few days before adding more and posting, the box room never got touched.
Wednesday the district nurse comes out to change the PICC line and check it is working ok, but unsurprisingly it wasn’t and had to phone the helpline, the last time I ended up just going up to the hospital but this time they followed procedure and the district nurse is coming out again tomorrow. It’s quite annoying as they don’t give you a time so it can essentially be any time between 9 and 5. This is one of my petty hates, it drives me batty “I’ll call around tomorrow” “what time?”, “Not sure but I’ll be round”... *waits around all day doing nothing but waiting* even a rough “I’ll be around at about 3”, “that’s grand I’ll not waste the whole effing morning waiting for a wrap on the door”.
Anyway, they didn’t come too late and arrived at about 11, at first the line didn’t work and we tried a few different things to try and get it to go, walking around the house pretending to be a bird flapping my arms but finally, as we weren’t exactly gonna keep on trying, we got it to work.
Later on the Thursday I decided to go into town to pick up a couple of forms, make the most of being sick and get a half-fare bus pass, not that I plan on using the bus much, tins of infections.
On Friday I seemed to have a bit of a sniffle and cough, no surprise really as I’d publiced the day before, I’m hoping it doesn’t come to anything. I had ordered an electric stove from B&Q I’m hoping that the flame effect helps me relax a bit, hoping, it seems pretty nice though and even just as a centerpiece will look decent. While I was at B&Q I saw a bonsai tree, it was falling apart and had a clearance tag on it so I thought I’d give it a home and it is now sitting on the windowsill in the kitchen. I’ll be quite pleased if it comes around and the leaves start to grow on it.
Today, Saturday I feel like I would like to do something but the weather is miserable and I couldn’t be bothered fighting with the wind to go anywhere so I think I’m just going to laze around, watch tv and play on the computer, maybe even a bit of reading. First I need to think about lunch first although I need to make sure I don’t eat too much and ruin the day completely.
I’ve got a CT scan on Monday to how things are progressing, I think they are, but I’m having other issues, the chest pain from the biopsy is still ongoing I would have thought it would have settled by now but I guess it will still be longer. Every time I sneeze or hiccup it’s pretty sore and when I do anything that you need to use the full lung, like cycling or walking I can notice I’m not getting a “full lung” and that there is some missing. I hope this will ease a bit and/or I get used to it. Another thing is the pericarditis, I notice this more in the mornings or when I’ve ate a bit more, there is that tightness which will also impede on being able to do, and I’m still on a fair amount of medication it.
Now I’m all caught up with the blog until I do something and then I’ll have to update that. Until next time.