Wednesday 30th December 2020
What Day Is It
Hi everyone, hope you have all had a lovely Christmas, mine had been a bit mixed. It was exactly how I wanted it but side effects of tablets have caused a few issues and I wouldn’t say ruined it but made it a bit more of a challenge than it could have been. The build up to Christmas was grand. I had everything in except a couple of things, one I knew won't arrive till the new year and the other should arrive a couple days before Christmas, but nothing to worry about either way.
There are so many things on tv that I have recorded that I don’t really have much time otherwise to watch films but I did take a day to not watch the normal tv stuff and just watch Christmas movies. Christmas Eve we always have our Christmas Festiviteves gathering, normally in Katy Daly’s but with lockdown and all that we just did it over Zoom, I was in hospital last year so missed out then but at least this year I was able to join in. I was gonna have a few drinks but as I take my chemo at 9pm I thought hmm maybe not, washing down chemo with booze probably isn’t a wise idea so maybe in a couple of weeks I’ll have a drink or two.
I did realise that my social skills are minimal to none, I’ve never been very good in groups but as I’ve not been in a group of people for over a year and a half I was very quiet being as tired as I was didn’t help either. But at the same time I like just sitting there listening to what’s going on around me, it was nice to see everyone or at least those that turned out for a while lol.
Christmas day I went round to my parents and dropped round the presents for everyone, I stayed longer than I had wanted to but it kept my mum happy and was home for midday, had a late breakfast and then things went downhill, my stomach started to play up and the tiredness levels shot up. That was me completely zoned out for a few days, even now still. All I could do was lie down and sleep, the tv was mostly on in the background while I dozed off but on a positive Christmas night I was able to watch the first innings of the Boxing Day test between Australia and India, not that it worked out too well for Australia but was good to watch.
The Big Bash is on in the mornings now as well so more cricket and still plenty of football on too, so with the two tvs one has the sport on and the other has things I’ve recorded. The WiFi around the house is as good as the cabled connection was so I’m pretty pleased with that and the reliability is a lot better than how it was, getting about 500Mbps. I’ll not complain about that.
I had duck in for Christmas but with the way my stomach was there would have been no point in doing it on Christmas Day so I waited for Boxing Day before doing it although that was a waste as well as my stomach was probably worse then. I had no idea what had caused it as I hadn’t had any lactose or anything with milk in it, but after a few days I’ve come to realise it will be to do with the chemo tablets and bunging me up so have gone onto some laxatives to try and help things. This will probably be the same with the tiredness but another week of them and then a week off and hopefully things will ease, the cramps have come back really bad too but there’s nothing much to be done about that. Last night though I seemed to get a good sleeping position where I managed to get about 6 hours of sleep without waking up with a cramp which I seemed to get every couple of hours at best.
I got a letter about my PET scan. It had been booked for the 7th of January where the hospital had planned for it to be after the 3rd cycle which would be a month later but I phoned up to make sure it was ok to go ahead with and they were happy to keep that appointment.
So pretty much since the last update I’ve slept and been a zombie, the cough has got a bit worse also since Christmas Day but probably a combination of the cold air and tablets. I am trying to get onto the treadmill a bit again but with the tiredness and the blood pressure tablets, I don’t want to take too many chances so a few short walks just to do something, better than nothing and avoiding going outside.
I hope you all had a lovely Christmas and have a good new year's too.
FYI I haven't lost track of what day it is.Monday 21st December 2020
Looks Around and Twiddles Thumbs
Hi everyone again except for you *fist bump*, hope you are all keeping well. Left it a bit to update as there wasn’t really that much to update on. I got the MRI scan pretty quick and showed that there was nothing so later that day I got out of hospital, only thing that has changed compared to going in is the increased dosage of Clexane, which are bigger in volume and needs to be taken twice a day rather than just the one in the evening. I was back at hospital the following Monday and they put me back on the Lenalidomide, chemo tablets, but they aren’t giving me the Retux this cycle just to try and help make sure the bug I had doesn’t come back and cause issues.
They have also reduced the Colchicine to one tablet every couple of days rather than every day, we tried to stop this a month or so ago and it caused me some issues so we’re going to try and reduce it slower to see if I can get off it as they’re quite keen to, especially before the BMT. So far it has been pretty good. I didn't notice any symptoms until this morning when I woke up with a tightness around my heart, I got up and had a bit of a walk around and got a drink which seemed to settle it, and I was due the tablet again this morning so will hopefully ease things again for a couple more days.
I’ve felt a lot better the last couple of weeks, and feel I need to do a bit of exercise again to try and build things up, but at the same time I don’t want to take any chances. I know I’ll start off slow and minimal amounts and build it up when I can but knowing in a few months I’ll be back to where I was again sort of puts me off putting the effort in now and just wait. I’m not too concerned about it but just have no strength at times for things and everything Is a real struggle to do.
Apart from the hospital stuff, things haven’t exactly been exciting, My Virgin Media contract is up next month so I got in contact with them and have increased my BB for pretty much the same price as I was on, which suits me grand, I could probably have got something a bit more suitable for me and a bit cheaper, and not as overkill but it’s reliable and I have plenty to watch and choice so I’m happy enough. I spent most of Saturday evening getting the house all set up with the smart plugs and lights and also updating the server. Was having issues with storage on the Pi, trying to find the file that was causing the problem was impossible to find just using FTP as I had been looking before, so finally linking it up to the TV I was able to find it pretty quick, 20GB error log which had been building up for ermm, I dunno 4 or 5 years? Gone now so I shouldn't have any problems for a while hopefully.
I’ve also started to cook properly from scratch rather than the mostly processed foods that I would have had. I seem to be enjoying eating a lot more, even though I need a lot of practice to get timings and portions right, even if things are a bit overdone or too much seasoning etc, but it’s a learning curve and pretty damn nice even when not quite right. I’ve managed to get rid of all the products that have milk in them, there were a lot of things that you wouldn’t think would have milk in them that do, salt and vinegar crisps being one, more the “fancy” crisps like doritos or sensations, Tayto seem to mostly not use milk in theirs and the brown multipack that I get doesn’t have any flavors with milk in them thankfully.
And so to today again, I was up at hospital for my last appointment this year and all was grand counts all in a good range and no signs of infection, so next time I’ll be back will be for treatment and hopefully won't need to get in touch about my heart. Home and had a bit of food, watched the last 2 episodes of the Mandalorian, will need to go for a nap this afternoon so will stick on some rubbish I have recorded and doze off.
Hope you all have a nice build up to Christmas. Update again soon enough.Friday 4th December 2020
Clotted Hean
Hi everyone, another fun-filled few days. Wednesday I wasn’t feeling too bad, didn’t have a fever the night before but I did preempt and take some paracetamol before the time it normally kicks off at. I wanted to phone the hospital to make sure it was ok for me to come up on Thursday morning, and I made it very clear that’s all I wanted to know saying at least 4 times to the nurse on the phone. I really didn’t want to have to rush up that day and if that was the case I knew they’d keep me in.
But for some reason because I’d had the fevers they just wouldn’t listen and told me to come up that day, I was absolutely fuming, it could have waited until the next morning when it suited me better and could have prepared better and I would have been in a better mood. For the rest of the day I was unpleasant and angry at everything. Hate dealing with the helpline and ward, pretty useless and have few good experiences with them so I prefer going in through bridgewater.
Anyway I made it clear I was unhappy and justly in my opinion even looking back a couple days. The wednesday proved me right I got there bloods were taken, took 3hrs for a doc to come and speak to me another 2 hrs for an xray in which time I was supposed to start a couple of infusions the nurse forgot and also had to walk down following a porter pushing another person in a chair, then finally started on the antibiotics, asked one nurse fo paracetamol, then another 2 times and finally over an hour later on the 4 attempt “oh I forgot” and finally got them. Was told I was going to one ward then changed to stay were I was which the last time is documented here and the following 2 blogs. Screw up after screw up. My favorite part was telling a nurse about how awful the ward was for her to tell me she works there, she asked when it was to use the whole covid excuse and I told her it was in 2018 and that I hoped it had changed and told her all the rubbish that had gone on. So fingers crossed it has.
Eventually at about half 11 I got taken round to a bed via some ridiculous route that was uncalled for as it was only up the lift the nurse wanted to show the porter how to get somewhere or something, turned out it was the same room when I was last in this ward. Got settled and another nurse came to set up the drips, she seemed to be competent enough so didn’t think things were gonna go wrong that night. Was shattered though with the lack of naps that I’m used to and the drugs too.
Next morning the person came in to give me breakfast so he decided to try and open the blinds which came down on his head, and so it begins. Thankfully I was in a better mood this morning and had an internal lol. I noticed the night before the light in the bathroom was on, didn’t take much notice at the time as I thought it was an automatic light, but turns out the switch string was ripped from the roof and lying in the corner, last time I was here there was a bad draft and it’s still the same, all three have been reported to maintenance so maybe in a couple of weeks something will be done about it, but for now anyone out having a smoke can see into my room and it’s pretty cold in the mornings.
So getting round to the actual plan they are keeping me in to get a CT scan asap and give me antibiotics, although I'm probably feeling better than I have for about a month so pretty poor timing considering everything is improving but I guess better late than never. Would have preferred waiting another day but meh. Was told on Thursday the scan would be first thing Friday morning so not too bad. Thursday was pretty much sitting around watching TV and getting drips. Which was grand, the staff do seem to be better than before but all they’ve had to do is change the drips although I do have to buzz every time it beeps as I'm in an isolation room and they can’t hear it outside. Always feel a bit bad having to buzz them as I feel if they aren’t there they’re normally busy.
That morning the cannula I had ended up blocked was in an awkward spot at my elbow and when it came out there was a kink in it so had another one put in on the other arm and then needed another for the CT scan as they needed a bigger one for the dye. Apart from that Thursday went grand. Friday morning got up, blood taken and started the drink for the CT and then on down to there. Everything went pretty smooth. They did a scan of my middle and chest and then another of my neck. The very last one of my neck I didn’t hear the “inhale, hold your breath…” and only the “breath” I told them and they had a check and it was ok.
Back to the ward and then more drips. A bit later the doc came with the results of the scan, turns out I have a clot in my neck, so they will be increasing my clexane to try and break that up, although I do think that’s clearing up by itself as it not really that sore anymore, still there but definitely improving from wednesday. Don't think it’s exactly what they were expecting nor me, I think they were looking more for signs of infection, that was the aim, but it did show that wasn’t the case and also that the lenalidomide that I’ve been on has been improving things. Another thing they found was a bright patch in my liver so they want to get an MRI done of that to find out more, don’t think it’s much to be worried about, could just be a cyst or a bit of infection or just a small abnormality that can just go away.
They would like to get back on the lenalidomide and so would I but with the higher dose of clexane longer term she needs to get more info to find out what other have done, so hopefully next week will be able to get back on that again.
So there you go you come in for one thing and throw a surprise party and end up with another. So a few more days here at least but as before, until I’m walking out that door I'm not building my hopes up.Tuesday 1st December 2020
Ad Infinitum
Hi everyone, I’ll keep this fairly brief or at least try to, last week continued with the cough but much, much worse I pulled a muscle in my neck and every time I cough it’s absolute agony, swallowing and moving is also really sore.
Thursday when I got to hospital I didn’t think much apart from the pain. Got the bloods taken and the checks all for the chemo, temp was up a bit but didn’t think much of it. Waited out in the car and then went to see the doc and he gave me a nasal spray to try and help with the nose which will hopefully in turn help with the cough.
Once in the treatment room I got my own bay and waited there. It was only when I was there they took notice of the temp being up earlier and checked again and seemed to have gone down but they wanted to check the bloods to see if the infection markers where up, which it turns out they were and so they delayed the treatment till next week and have put me on antibiotics to try and help with things. Waited around for them then on home.
My main issue was the pain in my neck, it’s so incredibly sore and next to no relief from it. It wasn’t until Saturday night when I got my first fever, temp went through the roof and was frozen to the bone so I just lay on the sofa and put the duvet round me, took a couple of paracetamol and curled up in a ball. I fell asleep and woke up feeling a fair bit better but still pretty rough. It didn’t help that I fell asleep about 6 or 7 and woke up near 11 so despite getting only a couple hours of sleep each night I doubt I’ll even get that tonight. I did end up getting a couple more hours later in the night and a couple of naps during the day this pretty much the only way I get sleep as I wake up every 2 or 3 hours needing to cough or choking and when it hurts as much as it does it really makes you dread going to sleep but it’s pretty essential.
The same thing again on Sunday another temp spike in the late morning and a fever in the evening and again on Monday although the cough didn’t seem quite as bad. Today Tuesday I only got a few hours sleep and am shattered but when I woke up I was completely bunged up and needed a few good coughing sessions to clear things but still really really sore. Temp hasn’t gone below 37 since Saturday and the consistent pain seems to be more in the gland at the back of my jaw and ear. I can barely eat the last two times I’ve tried to have a proper meal, I've felt a bit sick and had to lie down and after dozing off I’ve felt somewhat better. My stomach seems to have shrunk something shocking too, I can only eat fairly small amounts before I just can’t eat any more.
It just seems like there’s no end, I don’t think they’ll give me the treatment again this week, I’m certainly much worse than I was last week, seemed to just be the very start of it on thursday. The cough has been going on for months but the fevers are new, it would be so much easier if the pain settled, I could cope without that much easier. A decent sleep and feed are a forgotten memory. Hopefully things will start to improve soon.
Until next time.