30th April – Home! - My first full day back at home.

Thursday night was uneventful – the night staff were pleased that I was going home in the morning, but I still wasn’t going to be sure that I was until I was in the car!

In the morning, it was confirmed. I had breakfast, three half pieces of toast and both jam and marmalade!

Dr came in to say that the urine sample that had been requested would be better done by me and taken to the GP. Got up and dressed, and was then asked to vacate my room so that they could deep clean it. I managed to pack everything myself in my case, and I was given a pack of trainer pants and some more continence stuff. The domestic lady that came to see if I needed help said I should take the cream and spray as it would only be thrown away, so I stuffed those into the case as well.

I wheeled myself into the day room, and had a long chat with the Irish volunteer lady who gave me two cups of coffee and two biscuits! I had the whole of the day room to myself, and then lunch arrived. Cottage pie, mash and mixed veg, then my last hospital cheeses and biscuits.

Sat playing games and completed three “customer” questionnaires – one from the ward, asking about the usual things, including cleaning (excellent), food (good but monotonous and no nutritional information), dignity and respect. Next one was about quantity and quality of therapies offered. As I’d only used the physio and occ therapists, I left speech and language, psychological and psychiatric. The third one was from the Trust (on an A5 card with one of those scan logos as opposed to photocopied sheets).

I handed the remote control ceremoniously to Ellen and made her The Keeper of The Remote! She graciously accepted.

Then Juli arrived and we sat while we went through the discharge letter and the huge numbers of drugs. I realised that I am going to have to be really organised about this now that I don’t have a nurse wearing the “Nurse on drug round – do not disturb” tabard. I think I might buy one of those pill organisers and do several days at a time.

Got all the stuff into the car, and made our way home. We stopped at the petrol station to get fuel and I asked for a bar of Fry’s Turkish Delight as an escape reward. They are much smaller than they used to be! Came back via Lyneham, where Juli nipped into the Co-Op to do some shopping. Saw a friend of ours, John Holland, as we were coming over Braydon Crossroads, and there was much smiling, waving and thumbs-upping.

Got home and unloaded car, including me. Went up to loo, then back downstairs and ensconced in living room. Theet and Bap came round to say welcome home, and give me a lovely bunch of roses and tulips that Bap had chosen. Sian gave me a lovely bunch of helium balloons!

Watched tv and Juli cooked me a brilliant meal of steak, chips, stuffed mushroom and sweet corn. Plus a wonderful French stick with Lurpack. And a jelly for dessert. I was very happy!

Watched more tv while Juli slept on sofa, then up to bed. Realised that we didn’t have a stand for the night bag, which is important so that it doesn’t pull on the catheter. Juli cobbled together a stand to hang from the bed frame from a wire coat hangar. Got into bed quite easily and did some game playing, then lay down properly and fell asleep while Juli was in the bath.

Had a wonderful night’s sleep, and only woke once but we’d forgotten to take a glass of water.

Saturday 30th April
Woke up and just lay in bed, happy to be home. The night bag had worked well. Juli woke up and got up and went to bathroom, and I waited until he came back. Got up with no bother, and into bathroom for the loo and a wash. Got dressed. Came downstairs and we went to get the bread. A bit worried about changing the routine re timing for the meds, but decided it wouldn’t make that much difference.

Into the mini and off to Purton House for the bread, and One Stop for milk, bran flakes and sliced brown bread for my toast. Back to the house and into the living room, where I sat with one of our little side tables. I had my bran flakes and toast, while Juli had bacon butty and toast. I think I will need to buy one of those adjustable tables.

After breakfast I was feeling tired, so I moved onto the sofa, put my feet up and dozed. Juli and Sian were doing stuff outside, but they popped in every now and then, and I had my phone, so all was fine. Afterwards Sian told me that they had checked on me a number of times, by peering through the living room window! Then I had a visitor – Sue from next door, who brought me a card and a lovely bunch of flowers. This is good!

Checked the post to see if my blue badge had arrived, but it hasn’t. Never mind. However, there was a lovely card and letter from Val, saying that Matthew was getting married this weekend. How did I miss this? I must get a card. Speaking of cards, I realised that I hadn’t posted Karen’s birthday card. Real family failures here. I must do better.

Went for another drive to get some compost.

We were going to have a bbq, but the weather was a bit iffy, so the Asado was put in the Aga.

****very too much information warning*****
Then I needed the loo. Fairly urgently. Unfortunately, didn’t manage to get upstairs in time. When I got there, it was a disaster. I blame the change in diet! Sian had to call Julio for help cleaning me up, which was difficult. It ended up with me trying to get into the shower. We had had the new shower stool delivered, but I wasn’t supposed to use it until it and me had been evaluated by the occupational therapist, but we didn’t have time for that!

At one point I, my legs gave up and I ended up, on the floor. It took a lot of effort on everyone’s behalf, and the shower stool. Eventually, I got up, cleaned up, and redressed. It was a frightening experience, and I think we’ve all learned from it.

****ok again***
Back downstairs, and I was exhausted, so just sat  a while Juli and Sian finished getting dinner – Asado, mushrooms, baby potatoes, and salad. Sian went off to bed, and Juli and I watched tv for a while and then we, too went to bed. It’s slightly more complicated than going to bed in Chippenham, but we’re  managing!

28th April - CCH - The tunnel is nearly finished!

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!

27th April - CCH - Escape Committe & Planning!

Did some clandestine knitting! Sherley, the nice nurse, wanted to relearn how to do plain stitch, but for some strange reason, she could remember how to do purl! She asked if I could show her, but she didn’t want her colleagues to know as she was supposed to be working. So, while she finished the drugs round, I found a couple of spare needles in my bag and a ball of wool and cast some stitches on. I also googled some how to knit pages.

She came back afterwards, we closed the privacy curtain, and got stuck in. I knitted a few stitches while she watched, then she did some while I supervised and watched. Got to end of row, so I did a purl row and then I went and sat on the loo while she did a couple of rows. Success! I offered the bit we’d done so that she could do some in her break, but she didn’t want to do that. Came out of the bathroom to find she’d already put it all away in my knitting bag.

When I got undressed and ready for bed, we noticed that my ankles were really swollen. Worse than ever before, so I need to do more raising feet tomorrow.

Woken up for morning sugars at 6.30- again, I was technically hypo as the sugars were 3.6. I was asked if I felt OK, so I said yes, then realised afterwards that this was a bit of a silly thing to have said as I was half asleep and lying down!  Bit of a panic as no wee in the night bag, and they were worried about my kidney output, but on checking, it transpired that I had lain on my leg bag during the night and done something to the valve. Luckily, the wee doesn’t seem to have backed up and overfilled the bladder and affected the kidney, so all well and draining properly.

Breakfast and meds. Because of the hypo, I was concerned about having my increased insulin dose, especially as it arrived before breakfast, but the nurse had checked that it was ok, so I stabbed myself and washed loads of pills down. Breakfast arrived – Bran Flakes again, and a piece of brown and a piece of white toast.

By this time, I was feeling not too brilliant and had really bad pins and needles as well as a very tight chest, so dozed until I was got up at 10.30.

It was another very busy day on the ward. Mb left! She has gone to a specialist care home, but looked very confused when being wheeled out strapped into a wheelchair.

Then we had a load of people coming round doing an “audit”. It was to do with cleaning and they were very thorough by what I could see. The domestic who has been here for years, Caroline, knew a couple of them, and so wasn’t particularly bothered as she was confident that she does a good job (she does) and one of the auditors had been a colleague of hers from long ago. The auditors also looked at marks and bumps on the walls to see if they posed a hygiene risk.

I left a message for Sharon to give Juli a ring about the care situation (this will be an ongoing saga during today). Then another nurse came and left me with two bags of continence supplies (leg and night bags) for when I go home so that should they magically find carers and discharge me, I’ve already got them ready. Also the contact numbers for where to order more. They have also sent a referral to the district nurse for when I come home. So, as far as the hospital are concerned, I’m set to go home and they want to get rid of me!

There was no sign of a Dr this morning, so I asked the nurse about the wee sample request from Dr Lennox and GWH, and she said that that was a bit confusing as I was here and I’d been asked to drop it in to GWH. They send samples for testing (blood or wee) to Bath and so Sandra the ward clerk was going to ring Oxford and ask if it was ok if it went to Bath or whether it had to go to GWH, and if the latter, was it ok to post it (wee only lasts so long).

Pre lunch sugars 10.5. Nice lunch of chicken and ham pie, potatoes and cabbage and cheese and biscuits. Coffee.

Was going to ask to lie on bed for a while for the ankles but not sure when my phsyio session was, so stuck my legs out and did some ankle and toe exercises. Started doing some more research into NMO, and the charity set up to raise funds for the research and support of people with NMO. Again, I am feeling very lucky as I have it comparatively easy compared with others. So lucky not to have my sight affected. I’m not going to be able to match the fundraising others do, but will explore what I can do to help in my own little way. I have bought a t shirt, so that’s a start!

Then Alice came and asked what I’d like to concentrate on in my physio session – standing/walking/balance or cycling. I said that I was having a bad day legs and walking wise, and could I do cycling, please? No problem, so I got wheeled into the rehab room and strapped to the machine (sounds like a potential for either comedy or torture with machine going ever faster!). Because of the leg issues, only got to use first gear, but I did start cycling straight away.

Had a lovely time and actually enjoyed it. There was a gentleman standing at the bench playing solitaire (the sort with the pegs and holes, not the card one) so we talked about that. Alice hadn’t played it. He left at the end of his session, and I multi tasked, cycling and playing solitaire! I was rubbish as not played for years – the best I could do was 4 pegs all over the place. We then talked about all sorts of things – magistrating, dementia and movement, and babies (physios coming back from maternity leave and another will be going, and Beccy on phone trying to find cover for next maternity leave). In all, I did 6 miles in 40 minutes. That is further than from home to Bassett! I have asked about whether it was worth getting a pedal/cycle machine to use at home. Alice said that it wasn’t necessary as there were still lots of exercises I can do sitting in my chair (using the resistance band and possibly weights) but if I felt that it was helpful, then it would be good. I have since researched and found a couple that you can change the resistance on, so may think about it.

Phone call from Julio who has been raising hell with the Trust about wasting taxpayers’ money. Apparently it cost £1200 a day to have me here. Sharon being really helpful and doing what she can. Julio contacted Bev Tydeman’s agency and a lady called Tracey will be getting back to us. Tracey had already called Sharon (are you keeping up?!) and confirmed they would also need to do a home visit to see what needed and what I can do. Various discussions between Julio, me, Sharon and Tracey (Bird's of a Feather!) about what I actually need and when. Problem is that there are no carers available at the moment, and that if we say that we don’t need so much, then do we have to pay for it. Still down to availability whether private or hospital carers.

There is an NMO thing in Birmingham in May that I want to go to, which will involve an overnight stay, so I may need to book that soon when we get the details. Then my next NMO out patient appointment is in August, so the diary is getting full up!

Sharon called in to say that she needed to speak to some more people. Tracey from Tydeman's say that the earliest they could do a home visit would be Tuesday after bank holiday, and don’t know when they could schedule someone after that, so it looks like I’m in for a bit longer. We had a discussion about what needed doing when, budgets, carer availability and life generally.

Life is getting more complicated. I’m bed blocking, but I also have a hospital appointment for a scan for the kidney on Tuesday as well as the Tydeman visit. I don’t know if the hospital transport will take me to GWH for a private insurance scan. It seems silly for Julio to come all the way here, then Swindon, then home, then here (or variation on that) perhaps they could take me home, then collect me again later.

So, not sure what happens next. Juli is battling on, but as his arguments are based on logic and waste of taxpayers’  money, I don’t know how successful we’ll be. There will be no point in a Pyrrhic victory if it means losing funding later on when the responsibility transfers to the local authority from the Health Trust (can’t miss a stage out).

Pre supper sugars quite high (18.7, but the nice hot drink man gave me 4 biscuits with my mid afternoon coffee as I said I’d better not have a piece of fruit cake, which was also on offer). Supper was leek and pot soup, then nice ham salad. No idea what I have for pudding, as it hasn’t  arrived yet. I suspect it’s a piece of fruit as I had c&b for lunch.

It was a nice crunchy apple. My bowels and I waited for Juli (I think they are jealous and demand my attention when he is due/when he arrives!).

He arrived as Ellen was here, and he “offloaded” to her and me about the inconsistencies and illogicality and bureaucracy of the NHS. Ellen explained what the unit had been like before with a specialist stroke nurse as ward manager, who visited the potential rehab patients in their acute hospitals and assessed who would be suitable candidates for the unit. There was intensive physio, speech therapy, singing, craft, all sorts of rehab activities and people usually stayed between a week and a fortnight before being discharged with proper care packages where necessary. She also mentioned that the GWH Trust was no longer going to be in charge after July as they had either lost the contract or hadn’t bid for it. So, even with the shortcomings in the unit that she saw at the moment compared with what it had been before, I think I am probably lucky to have been here before July.

We then went to get our drink, and went and sat and talked through Julio’s plans for getting me home. This is basically a re-run of getting me out of Jupiter Ward at GWH – even with the same lady at PALS (patient liaison service), who remembered him from before. Not sure if this is a good or bad thing. He wants me home on Friday.

We also talked about the NMO thing next month, and the need to stay overnight. I will need a wheelchair accessible room, which will be a new experience for me. We like Campaniles (we stay in them a lot when we go away as we like their dinner hors d'oeuvres - and dessert buffets!) and there is one nearby. I need to research disabled rooms.

Back to room, Juli took the continence supplies and my dirty clothes. Unfortunately, didn’t bring any clean ones, so a bit limited tomorrow. Restocked my biscuit stash (as this seems to be a regular feature if my updates, I’d like to point out that my little plastic container doesn’t hold that many).

Rang bell, and went to loo. More chat with Ellen. Told her about the very moving tribute to the Hillsborough victims on Radio 5 last night about midnight and suggested that her partner may want to iPlayer it. She said that she thought he’d heard it as he’s a long distance trucker and listens to the radio a lot.

So, that’s it so far today, I’ll let you know if there is another secret knitting session tonight!

I’m not sure how I feel about going home without the care package being sorted out – not because I don’t think that I will be cared for well by whoever (Sian, Julio, NHS appointed agency carers or our own private careers), but because I don’t know what knock on effects any arrangements we make that is not NHS care plan being implemented will have.

But, the escape plan is being hatched.

Goodnight!