So, this will be a somewhat long and disjointed post as it’s from memory and you’ll get an idea why it’s a mess during it!
So, at the end of the first day in hospital things were looking up. But I was in for a bad night.
If you don’t know, one of the things that happens in some wards is that you’re observed every so many hours. Ours was 2, so as midnight, 2am, 4am, 6am you’re awoken to take blood pressure, O2 saturation, heart rate and asked if you’ve been to the loo. This is one of the many reasons that you don’t get good sleep in hospital – on top of what’s coming…
In addition, your medication is (rightfully!) monitored – but this includes what you are bringing in from home that you manage yourself normally. The schedule for this can be different to your home one, and in my case one of the pills caused problems, plus the hospital seemed to have quite a lack of understanding of how much Creon I need to take with each meal. Combine this with three meals provided (rather than the 5 smaller meals / 3 meals plus 2 snacks) and documenting what happens, you can see this becomes quite a task when you’re trying to get as relaxed as possible.
The overnight was bad. I’m not an “old hand” in hospital, but know the best way to get set up so that I can watch my old laptop while I’m awake (on the over/side bed table that moves) and then have learned to go to sleep in a position which is least likely to disrupt the flow from the canula (which I had a late IV of antibiotics in) so if it’s needed again I won’t need a new one (as the next option is the back of the hands which is really restrictive). I cleared one side of the bed access so obs could be done from that side without moving anything and if you have someone subtle you can almost not break your sleep.
This was not to be. After midnight, nurse crashed in with the trolley, moved all the tray and then loudly annouced she needed to take my obs. And then asked if I’d been to the loo: “Since when?”, ‘last observation’, “yes”. ‘And what about a poo’? “No, that’s once a day for me normally. Went about 9pm”.
So that was enough to keep me awake and need to get back to sleep slowly.
The 2am one was worse. Same questions again, very loud. Same answers, funnily enough, and more movement of the stuff in the bay.
But it was next door was the problem. NG is hard of hearing (not his fault), and his O2 was clearly low – which can happen when you’re sleeping, so if you’re in the know you take a few deep breaths as soon as they arrive so you’re at the right numbers and get left alone. He didn’t know this. So, cue this exchange at 2:18.
“You need to breathe!”
‘I am breathing’
This was repeated, louder and louder, a number of times. No explanation given to NG (and he was breathing after all, why would he think he needs to breathe deeply to change a number on a machine?). He was quite distressed by the interchange as he just didn’t understand what was happening – as they were just talking past each other with no new information being given. Eventually she gave up (after about 10 minutes) but it was a real case of better training and understanding being needed here. I’ve been very positive about nearly all the staff I’ve met in the NHS but this was a clear case of someone who needs to take some training and account of the people she’s dealing with as it was not the patient’s fault. And both I and William opposite were now wide awake.
So, a terrible night’s sleep. Got some patchy snoozing in but no real sleep. Gave in at 5am or so and just started to try the world’s complete collection of 5×5 nonagrams (which I have found very useful for mindless distraction).
Breakfast was weetabix which it turns out I can tolerate OK, but still needed the Creon negotiation etc…
The consultant had been in briefly to say they would discharge me today as things were looking up and they knew this was to be as short a stay as possible (and nothing else to be done).
NG’s condition was clearly getting worse. He was complaining to family that it was hurting more, but not reporting to the staff, and refusing any pain medication which seemed really odd (he reported pain as 8 out of 10 which would have me begging for anything available). He was still very loud, and had loud visitors in the morning who took him out for a while, so we got some quiet which was a real relief. Only half an hour, and then they were back.
T arrived with some snack food which was good, and felt like eating it (also good), but just felt wiped out. I guess really I’ve not had much sleep on top of being pretty ill so it’s to be expected.
With the noise back, I was done – just too much happening, and while I wanted to sleep that wasn’t an option. I know it sounds harsh, but it’s been really difficult dealing with the noise and disruption and I think had I not spent years doing Sam Harris’ meditation practice I would have been in a very different place. Can’t recommmend him highly enough, and if I get time I will expand on this area in a ‘thoughts’ post at some point. If.
So, then the long wait to get discharged. Because I had new meds to come home with (targeted antibiotics) these have to be prescribed and that’s what usually takes the time. One of the lovely helpful nurses did all my property checkouts and paperwork and then said she’d chase up the meds, but that can take time (I already knew, alas!). She did this multiple times and each time she passed kept me updated.
Meanwhile it appeared NG’s condition was noted. I’m not going into details, but it became apparent he needed at least a camera procedure, and possibly more, and this was explained clearly by the surgeon who was going to be doing it. But it took a long time for this and he clearly has learning difficulties which made the situation much worse, combined with repeated intervention and interruption from family members during the process. I know informed consent is important (and the worst possible situation has to be outlined in case it happens) but it was difficult to hear how much needed to be done to get this happening (which it appeared it finally would when we left).
By maybe 3pm the meds arrived so we were in a position to leave at last. But I was toast at this point. Totally wiped out, despite the joy of being able to leave. Getting to the car was quite difficult (sounds crazy but Poole Hospital is built on many levels, and a hill, so what seems like ground at one level is underground at another) and the disabled parking was difficult to get to, but got there in the end.
Came back home to Bel, Edson and Jack in the tent in the back garden they’ve bought for this summer’s adventures, which I love to see. I was happy to see them all but so wiped out I know that I wasn’t any kind of company. It’s father’s day today, so it was particularly difficult, and I couldn’t read their emotional cards/letters as I’ve been crying a lot already – anything will set me off as I’m just so wiped out. So they are saved for another day when I think I’ll be up to it (no way I’ll get through without tears though!). Summer video called for us to open up what she had sent, which was funny as an ebay package I’d bought for the new LED wall was what T thought was my present (it was in an amazon bag, often happens with ebay cross-sellers), so she was bemused when what she thought was some lovely coffee had become two network switches! Mix-up discovered (I was already pretty sure that was what was in that bag), was good to see and talk to her albeit briefly and via video.
The kids managed to get the tent properly packed away (not so easy with this tent, I think this was third attempt), so there was much triumph! Lovely to see both for that and also that they’re sticking with things and not breaking at first attempt. It makes me feel like I’ve contributed something to them that will stick with them, that you can keep trying and eventually things can come good. Resilience is an important skill to learn, but not always an easy one.
Off they went. T and I watched some videos on YT (mostly woodworking), and then bed. Slept until the pain woke me at about 5am, so this is the next phase to deal with. I’ve accepted that I need to take the oromorph regularly, which seems like a final step but it was always coming. Always. I just hoped the can would be further down the road.
So, I’m at least back at home and in some semblance of recovery. Had a good breakfast (first time in a week), and need some days to hopefully build a bit of strength up. I’m hoping that the pain on the right will subside, but fear it wont – the scan confirmed that this is a tumour – and each movement (particularly going to the loo) is painful, so I know this is another phase. And there are only so many left.
