How quickly I seem to have slipped into not being good at updating my blog. It’s not like I’ve not had the time! Anyway, here’s what’s happened in the last 10 days.
Thursday 13th – Discharged
I was eventually discharged at about 9pm on the 13th. It wasn’t exactly the best experience, but in fairness to the nurses they seemed to be a little short-handed (I’m not sure I saw any HCAs around after shift change), and they had at least 3 difficult patients to deal with, including one who had grown increasingly rude, racist and mysogenistic throughout the day. Inevitably the main hold-up was waiting for my medication to be sorted by pharmacy. The doctors had agreed to discharge me with tramadol and oxycodone on top of my usual meds, as well as a nice array of laxatives to (quite literally) keep me going until the device is switched on.
It was nice to be home, although did feel a little weird last night not having the hustle and bustle of things going on around me. The comfort of our own bed was lovely, and I slept reasonably well, although still work up around 5.30, presumably because my brain presumed it was time to have my obs done. It seemed rude to wake Ruth up to do them though. 😀
Sunday 16th – Urgent care response team
I suppose I shouldn’t have been as surprised as I was, but I got a call from a physio in the community urgent care response team. I think it was the fact they are called “urgent care” and the fat it was a Sunday. Stupid me just to myself “surely they’ve got people to look after on a Sunday”, not thinking that I might be one of those people! 🤦♂️ She explained that I’d been referred to them by the hospital as part of the discharge process and that she would be coming out to see what, if anything, I needed to support being at home. Eventually the penny dropped that this was on the back of the occupational therapist review prior to discharge talking about things like the discomfort I experience with the toilet etc. The physio came out, asked me a bunch of questions about how I was managing with being home, how mobile I was (I was somewhat more confident on two sticks by then, although legs or head would seem to disappear on me without warning!), and how I was coping with washing, toilet etc. She did my obs and everything seemed to be fairly ok. She then explained that she would get a few bits of equipment, but because I come under Test Valley council, they would need to be ordered, and might take a few days or even a week to arrive.
Monday 17th – busy day … relatively
First visit of the day, and first time I’d been out of the house since I came home, was to go and get the sutures removed. On the whole they weren’t too bad coming out. I’d taken some slow release tramadol earlier so that it would start taking effect before I got to the GP practice. The stitch in my head was really troublesome though, and the way the nurse was talking about how embedded it had become, I had visions of him needing to make an incision to get to the stitch out. How ironic would that have been?! Eventually he managed to get it out and I was finally dressing free and able to have a proper shower. By the time I got back though I was too knackered and in too much pain to think about showering, so that would have to wait until the next day.
A bit later a nurse, accompanied by a student nurse, came from the urgent care response team. Lots of questions about how I was getting on, I suspect much of the repetition was to enable the student nurse to gain experience. They did my obs, checking my blood pressure sitting and standing to see if the head-rushes I was sometimes experiencing (although not necessarily straight after standing up) were because of my BP dropping. In fact my BP was the best it’s been for ages – about 130/79 if I recall – and remained the same standing. Given there was ongoing concern about my bowel movements – or relative lack of – they came armed with suppositories and a mild enema. I convinced them I was probably ok without, but they left the suppositories with me anyway, just in case I fancied using them! They said they were expecting the equipment to be delivered quite soon, and sure enough it arrived an hour or so later. Much quicker than the potential week the physio had estimated the day before.
Tuesday 18th – no sure how I feel
Ah bliss! Ruth gave me my first proper wash under the shower in 11 days! It was absolutely knackering, but so worth it. I was definitely not feeling that good by Tuesday though, even before the strain of the shower. I’d had an occasional tickle cough since Id been home, and was starting to feel like it was up in my sinuses. The pain was very much across my back and neck. I was trying to mobilise a bit more which would have exacerbated the pain. Whenever I am not sat or laying with my head supported, it doesn’t take long before it feels like my neck isn’t strong enough to hold my head up. I think I was also expecting to feel better than was reasonable so soon after major surgery.
Another nurse from the urgent care response team came out. My obs were all fine again, with BP at 120/70 both sitting and standing. He was happy that I was managing ok, and my bowels were working enough, and so I could be discharged from their service.
Wednesday 19th – Equipment confusion
I had a call from someone else at the Urgent care response team. They said the equipment that had been ordered for me would be delivered on Wednesday 26th, and she wanted to arrange to come out and make sure it was all set up correctly. Having confirmed that this was the same equipment that had already been delivered on Monday, she came round an hour later, did my obs (all fine again) and checked how I was using the equipment, making a couple of adjustments to the height of the stools.
Bringing things up to date
Towards the end of last week I felt I was going backwards a bit in terms of recovery. On reflection – or perhaps it’s more about Ruth telling me what an idiot I can be! – it was probably a combination of mobilising a bit more, my bowels having got into the very inconvenient routine of requiring nightly visits to the loo between 1am and 2am and thus ruining my sleep, and above all me expecting way too much. I seem to have this view that I should feel a lot better when I get discharged from hospital, when in fact all that means is that I no longer need specialist care. There’s probably an element of stir craziness setting in as well. Work began on the garden projects towards the end of the week, and that set me on a train of thought of some of the potential extras. Having too much time on my hands, along with having the brain-fog with extra medication on top, means I get way too wrapped up in trying to find the perfect solution to everything, even if it’s things we don’t need to decide about for several weeks yet. Maybe it’s time for me to just switch off for a bit and get engrossed in a boxed-set of something. How long will it take me to get through the whole Star Wars and Marvel Universe collections? 🤔
Big day tomorrow
Finally for now, tomorrow is the big switch on day. 😀 Ruth and I are going to see Mr Mundil and the Medtronic rep tomorrow afternoon to be shown how to use the new device, get the initial configuration checked, and switch it on. I’m not expecting a miraculous change straight away, but it is the start of the next chapter.