No more clandestine knitting last night as Sherley had been practising at home, and all was ok. Pre bed sugars 11.3, so went to bed and had slightly more buttons than usual and 3 rich teas.
Woke up at 2:30, tangled up in my earbud cables. Switched radio off, had drink, went back to sleep.
Woke up just before 7, when there was noisy activity on ward. Morning sugars 6.4. Put Radio 4 on and did some surfing until breakfast. I knew I wouldn’t be got up until later as I was scheduled an occ therapy session, which means they get me up rather than the care staff (partly so they can assess progress and partly to ease pressure on care/nursing staff). This meant a careful balance of timing of going to loo – can I hang on until I am got up, or will I need to ring bell? It doesn’t help that you don’t know exactly when you will be got up.
In the end, I needed the loo, so rang bell. Put my shoes on (need them for the walking) and walked to bathroom. Sat on loo, and left to my own devices. Finished, so rang bell again, and Stella the OT arrived to carry on. Washed feet and legs whilst on loo (had a tricky balance moment reaching my toes which were on the bottom rail of the frame, but I think I got away with it without Stella noticing!) stood up to have nether regions dealt with, pulled up pants and trousers, and walked into bedroom and chair by sink and got on with washing and dressing top half. Managed to finish this, pull back curtain, open door, and put nightie away in cupboard and get settled in chair before Stella came back. I think I can manage this quite well.
Just as I’d got settled, the hot drinks came around – great timing as sometimes I have missed out on this in the past as I’ve either still been in loo, or door/curtain shut!
New patient wheeled in by ambulance transport people past my door from left to right, then a few minutes later, back in opposite direction. I think they must have put her in room 1 next to me.
Then some work – revising a lease and a letter of dismissal, plus some other stuff. Researched care providers. Made another doctor’s appointment for next Wednesday for a catch up (the appointment I had to cancel for yesterday).
Had a look at my Facebook page as Sian had put up about my blog, and emailed my Bench Chair who had emailed asking how I was, so I told her! I also mentioned having a recce to Swindon Court and asking for a dispensation so I don’t have to go to Salisbury (being in wheelchair is a bit more drastic than just arranging swaps for Salisbury sittings!).
Julio has been texting/ringing – he has had an interesting conversation with someone we know that is in the care system and has found out about Informal Care Plans which have some legal status but everyone in the system seems to pretend don’t exist! He will speak to Sharon.
Pre lunch sugars 17.2 (stress?). Lunch salmon fish cake, mash and baked beans (and I was given a side helping of parsley sauce in case I wanted it. Me? Parsley sauce? Of course!). Dessert was an apple – and then I was offered some ice cream (it’s ok – it’s suitable for diabetics). People are being very nice to me!
Sharon came and talked about the conversation she’d had with Julio and that she had also spoken to the Malmesbury care team manager, who had heard of informal care plans, but not sure where they fitted in with the legislation. Agreement that we would be flexible with the timing of the visits (9.30 or later for the morning one to avoid the rush hour) and another at some point in the afternoon. We will abandon the evening one. Sharon went off to speak to the ward manager about it. Nurse came and gave me more kit. They have again contacted the community team in relation to catheter replacement and care.
Blood pressure 116/56. I had to fill in a menu choice for Saturday, even though I won’t be here (I have made my usual choices and hope that whoever is in my bed likes ploughman's!).
Lots of texts between me & Juli about the developing situation. I have also called the GWH to confirm my scan appointment for my kidney on Tuesday. It is at 12.25 , so we need to be there at least 10 mins early. Luckily, it is via the health insurance, so we will have free parking at the entrance.
I was then asked by Alice the physio if I would mind if they locked my bathroom door so someone else could use it. "My” bathroom has two doors; one from my room, and another from the corridor so that if the person in the room is confined to bed, it can be used by other patients. I said that was fine, as to be honest, I do feel a bit guilty that I am the only person on the entire ward with my own loo. Alice then came back later and said it was ok, they didn’t need it as they had decided to remove the extra wide commode chair and take it into Room 1 (the new patient) and use it as a commode rather than a loo seat.
So, it is now 4pm. Things have quietened down in terms of both activity in the ward and the escape tunnel.
I think I will ask to lie down for half an hour to relieve my ankles.
Lay down for a while, and was going to watch tv and possibly have a little nap, but the time was taken up with texts between me and Julio and looking up local care providers on the Internet. It was then 5pm, so went for a walk to the loo just before supper. Pre supper sugars 17.1. Supper was chicken soup, a lovely smoked haddock salad and cheese and biscuits. Had a cup of tea, then emailed the NMO team with an update.
Waited for visitors. Sian arrived first, as Juli had been delayed in the office, so we went down and hid outside to surprise him (which we did!). Sat by the drinks machine and had drinks and talked about coming home, BBQs, having steak in a restaurant (not fussy which – Harvesters or Beefeater is fine for me!). I am also wanting to vary my cheese and biscuits and have Hovis biscuits and Stilton, or Cornish wafers and Brie.
Summarised everything about the escape tunnel. Back to room to remove everything I didn't need tonight or tomorrow to minimise the amount of stuff that I have to take tomorrow as there will be a lot of stuff in the form of the continence supplies and meds, as well as the wheelchair and walking frame. Julio will be taking me home in the mini.
We had a chat with Ellen, then they left.
Watching Masterchef (not sure if I’ll be allowed to watch it at home).
Goodnight – hopefully next update will be sent from home!
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