Home for a couple of nights

Our hard fought for home stay is under-way. Mark arrived home this morning via ambulance with his dirty washing and all his drugs. He's settled in, had some of his tools delivered by a friend from Lefkas, gave them a love (the tools not the friend) and now has all his computer stuff unpacked and all over the place. Nothing has changed at all!!

While there isn't any pressing news I'll tell you about Mark's session in the disabled kitchen. Everyone gets an hour in there as part of their OT. Most people make a cup of tea, maybe some toast and the adventurous may even make scrambled egg. Not Mark. Oh no, he wanted to make curry and not just enough for a couple of us but for half the ward! So off I trot with my shopping list. Next day I struggle my way to the ward with 2 heavy carrier bags stuffed full, a canvas bag with a big pan, sharp knives, spice grinder, chopping board and basically every little implement he might need cos we don't know what's available in the kitchen.

So we get out the onions, tomatoes and chicken and Mark starts wielding a large knife. Any minute now there's going to be a blood bath me thinks, I'm glad I'm not responsible for what could go wrong. Not so easy for poor Scott (the OT in charge), as the blood drains out of his face watching Mark, he's hovering closely trying to encourage Mark to take it easy with the knife and maybe he should do some of the chopping. NO. Mark was doing it all. I sat back and watched the pantomine occasionally not able to contain myself and bursting out laughing at poor Scott having a near nervous breakdown.

With a little more help than he thought he would need he did create a very nice curry. We managed to stink out the hospital to a radius of about 100 yards in every direction from the kitchen and poor Scott had to change his clothes because he stank so much. Three of us ate curry for tea and most of the nurses had snack amounts and there was still some left over.

Much better day today

The new regime of meds they put Mark on last night seem to have had a positive affect thank goodness. His spasms weren't nearly as bad today, so he wasn't as tired or in as much pain this afternoon. Not sure when he'll have his MRI - the MRI machine is broken and they're taking emergencies elsewhere to be zapped. Not sure when it will be operational again. The place is going to the dogs.

Tonight he managed to transfer onto his bed, get his transfer board out from under his bum and lift his legs onto the bed AND take his shoes off - that's an amazing improvement just with the change in meds. Normally he transfers onto his bed, I get the transfer board out, put his legs onto the bed and undress him. He was so proud of himself he wants a medal!!

Tomorrow going out into the community again - heaven help the community I say.

Mark has been deteriorating in health over the last few days. His strength has reduced significantly and the spasms in his chest are becoming more violent and painful. He had a visit from his consultants boss today and Mark told him that the pain and spasms he's having are getting worse by the day and no one seems to be listening. Mr Jamil felt around Marks operation area and he thinks there's a problem either at the top of the repair ie where the screws are or with the vertebrae above it. He ordered further x-rays to be taken when Mark was in various different positions - that happened this afternoon -just shows things can be done quickly when the right person asks for it to be done. Unfortunately the x-rays didn't show what he wanted so Mark is in the queue for yet another MRI, we're hoping that will happen quickly. Mr Jamil looked at Marks swollen legs and said they were totally unacceptable and bordering on dangerous now. He has also told the Physio Dept to get some special leg wraps that can be pumped with air and slowly squeeze the excess fluid out. We're hoping that will also happen quickly.

We're both worried that the syrinx in his spinal column might be causing some of the problems as they did tell Mark that the first sign of it increasing in size would be loss of strength and/or sensation and/or motor function. Really hope that is not the case.

Marks hospital bed and hoist were delivered today ready for his home visit next week, somehow that had the effect of making the next stage very real. And scary.

Just to top today off, some lowlife took my phone while I was at the hospital, can't believe how despicable some people can be!

Today we are raw

Sometimes there are gaps of a few days between blogs, because some days it's difficult to describe the emotions we wade through trying to come to terms with the enormity of what's happened. How our lives have changed and will continue to change. Aspirations and dreams suddenly derailed. Yes we know our lives will continue, along different paths, finding a new reality and future. But some days that new reality hits us like a run away train, it pulls us up short and we struggle to see a clear path ahead. There is light at the end of the tunnel, but the truth is the tunnel is still part of the journey and the utter blackness of that tunnel sometimes overwhelms. Today was one of those days. We fill in yet another 'form' having to highlight what difficulties we face and we realise the way ahead is going to get even more difficult in the short term before it gets easier.

Normally I only write when I am not feeling emotionally stripped, I like to keep a positive outlook, I am the eternal optimist. However optimism is often a cloak to disguise the fact that the reality we are currently living in is not something we can cope with. Tomorrow will be better.

Passing out Parade

Yesterday morning was second Case Conference. The Liaison Nurse at Pinders had arranged for our Social Worker to be at this meeting (we didn't know we had a Social Worker, no-one told us, apparently the Liaison Nurse has been speaking to her for a while about our case - HELLO - we're here too!!), along with the District Nurse, who we did know was coming. Both very nice and we're pleased we've met them. Particularly the District Nurse, she was standing for no airy fairy stuff from Mark's consultant or the Liaison Nurse (who is not the easiest person to deal with despite the title of Liaison). Also in the meeting was Marks Physio and OT.

Purpose of the meeting - to get rid of Mark now as soon as possible - irrespective of whether he is ready or not. Our original discharge date was Aug 31st, 2 weeks from yesterday. Up to this point Mark has had no home visits despite the fact we were told when we first got there he would start coming home for weekend leave after 8 weeks. At the last case conference we were told he would get one or two weekends home before discharge, now we're being told he'll get a big fat ZERO. The reason - there's no money in the budget for weekend care! After Mark vociferously stating how disappointed he was over this and explaining how important it was to him to have at least one home visit to see how we all manage and saying we would even compromise and have a mid week visit, they all took a deep breath and agreed to work towards a home visit for Aug 30/31 and move the discharge date to Sept 7th.

Mentally and emotionally Mark is ready to come home and I'm ready to move on to the next stage, driving an hour and back to the hospital every day and spending a minimum of 5 hours there each time is beginning to wear me down. However we discussed it before the meeting and we both agree that medically we feel he's not ready. They still haven't got his pain and spasm medication stable but more worrying his dangerously increasing oedema. This has been getting steadily worse while he's had the pressure sore because he couldn't wear his compression stockings. He has severe fluid retention and swelling all the way up to his hips. He mentions it every time he sees a doctor, every time he sees the consultant and so far all they've tried is a mild diuretic (diuretics make you pee a lot and should reduce the fluid), they've not worked AT ALL. It's really hampering his Physio because it's getting harder and harder to bend his legs. The District Nurse came into her own here and had a 'serious' chat with the Consultant, asking why they hadn't tried this or that. There was a modicum of embarrassment and defensiveness on the side of the Consultant and Liaison Nurse but happily they agreed to be more aggressive in treating it and trying to get it to a minimum. As if the whole situation isn't hard enough, everything is a sodding battle. Mark's sick note ran out, that suspends his benefits claim and it's taken us 2 weeks to get another after asking everyday for it. Anyway we now have the record for the longest case conference ever!! We came out looking dazed and weary carrying the Social Services 20 page assessment form to consider. Social Worker will come again next week with 2 careers to do a moving and handling assessment - if they're not happy the home leave won't go ahead and she will also assess Mark and fill in the form after we've filled in whatever we can.

Mad Mary - benefits woman. As if we hadn't had enough for one day we now had the DLA form to fill in, another 30 odd pages of inane questions (hospital told us she would be there Tuesday but they got it wrong, it was Wednesday). That took over an hour and after reading all the help guides online and understanding how much detail you need to go into in these forms, I don't have a good feeling about getting the higher rate that Mark should get for his level of injury with what she's put down. As if just trying to manage to get on with our new life isn't enough to contend with, we're drowning under the weight of paperwork. Does it sound like we're having fun yet?????? Came home and had a few big glasses of wine with my 'shoulder to cry on' Janet, and now today is another day - hopefully a calm one. Love you all for all the support you give us x

Mark 2 shoes

Text from Mark ...."I'm going 2 have 2 shoes on 2 day, give me a medal :-) me scab fell off this morning I can't tell u how happy that makes me feel :-) "

Marks pressure sore is finally healing, he's only got a plaster now instead of a big bandage. Just shows how our world reduces in times like this and as much as we're trying to expand it by going out as much as possible what we concentrate most of our efforts on are the little day to day improvements.

Marks days are a bit up and down at the moment, he's still working as hard as he can in OT and Physio and doing really well for his level of injury (one of the nurses told him his transferring would put some paraplegics to shame particularly as he's got such a big frame to move about) but the cocktail of drugs he's taking are making him drowsy so by the afternoon he has been known to drift off in the middle of telling me something. It wouldn't be so bad if they were working but after a couple of weeks on this cocktail they seem to be having less and less affect, particularly on the pain.

We've set another mutiny in place. Pinderfields have cancelled all home stays apart from 1 or if you're lucky 2 just before you're discharged. Supposedly due to lack of money. Home stays are a vital part of rehab, they enable people to gradually get used to their new environment and sort out any problems they might have managing their new life in a chair before they go home for good. We've talked to the Aspire(housing charity) peer advisor who visits every week and he was appalled. He's written a report to his' higher ups', that's gone to a former senior civil servant who is an advocate for patient care now in Spinal Injuries and he's coming to see the 'higher ups' here. None of this will happen in a time frame to help Mark but maybe it will help others coming along behind him. Patient education, which is vital with Spinal Unjuries is also non extistent here, if it wasn't for us nagging for information and reading everything we can get our hands on we would be sent home almost ignorant of the importance of good bladder/bowel and skin management and that's just the most crucial. Pinderfields like many hospitals is in a complete financial mess and it's really showing on the wards and particularly with Spinal Rehab which is the forgotten corner of the hospital.

Consequences of me doing car maintenance

One of the headlight bulbs in the car has been out for a couple of weeks and I've been waiting for Mark to be able to supervise me in changing it. Saturday was that day. I've mentioned the Barbara Bus a few times, it's our means of transport when I take Mark out, well it doesn't live on the Hospital Grounds, apparently the hospital won't give permission for that …........ it lives a short way a way in the grounds of the Hospice. When we use the bus I leave my car parked in it's space to keep it free for when I get back (if all this sounds a pain believe me it is) anyway I take Mark up to where the car was parked so he can keep an eye on me doing something under the bonnet. As I'm peering in to where the bulbs are my glasses are getting in the way so I take them off and place them on the fuse box just in front of me – can you see what's coming yet? Before I get very far with my maintenance it starts to rain so Mark and I retire back into the Barbara Bus until it stops. It goes on drizzling, and on and on, so eventually I said I'm putting my jacket on and getting it done or we'll be here all day. So that's what I did, with Mark shouting instructions from Barbara Bus. OK, job done, bonnet closed, get back in Barbara Bus to go to the movies and off we go. We're about half a mile down the road when I think 'I haven't got my glasses on', Oh POO!!! I know exactly where they are. Back to the car, open the bonnet and there, just where I left them is the eye pieces with no arms and two chunks missing from where the arms used to be attached. Oh POO!! now I've got Pinc Nez. You just have to laugh, well I did, Mark didn't see the funny side at all. If I didn't laugh about a lot of things right now, I'd probably start screaming and not stop.

Sunday. Me with my Pince Nez and Mark with jumper and jacket set off to spend the day out in the community. It poured down all morning and we're going to a BBQ. Well it is summertime in England what else should we expect! However, by late afternoon the rain stopped and we even saw a little sunshine so cooking took place outside and we even stretched to eating outside all sitting around a Chiminea, utter madness.

Mark did well, even though he was falling alseep right after we'd eaten. The drug Baclofen that he takes to help with the muscle spasms makes him drowsy which is a pain, he's constantly falling asleep, sometimes in the middle of me talking to him – some might say that's nothing new.

Surreal Moments

Sunday we went to visit friends who live in a tiny village just outside Richmond, North Yorkshire. It's in the middle of nowhere. Their local is about 300 yards along the road and we set off to have some lunch. Stuart (also in a chair) and Mark with me pushing are in the road near the footpath (footpath not suitable for wheelchairs) when a car comes past us then pulls into the side behind us. We all look around thinking some is going to jump out and give us a bollocking for being in the road, when out steps Neil and Miggy (they had their boat moored across the pontoon from us in Lefkas). How bizarre, we haven't seen them since they sold their boat in the spring. So we all stand about in the road then and have a bit of a chinwag, like you do.

After they had gone on their way we had our first experience of getting into a pub not really equipped for wheelchairs and in the process of someone hauling Mark up a couple of stairs they mis timed it and sent Mark hurling forward in his chair just as I was bending down to help. He head butted me big style. Oh but we have soooo much to learn.

I did have a piccie to put in with this entry, but at this moment in time, I seem to have misplaced my camera - please don't tell Mark, I'll get an ear bending!

Today we went all the way to Hull for him to try a car, then out for a lovely curry. On the way home (a journey that should have taken us 1 1/2 hours), as we get to the motorway and it's closed, we were sent off on a 20 mile diversion all over the country side before re-joining miles on. It took us over 2 hours to get back. As we're getting out of the Barbara Bus at 11.15pm I get a call from the Spinal Unit to find out where we were - I think they were hoping I had kidnapped him and wasn't bringing him back, but sadly they were wrong, think we were on the verge of getting a bollocking for getting back so late but lucky for us they were so busy they didn't have time!