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.