Birmingham

Our first overnight stay away from home went rather smoothly. Packing up before leaving home was ridiculous, worse than leaving home with kids, I had that much, 'just in case'. We didn't leave home till 7pm ish so had a really easy run down to Birmingham. Room was adequate and had a massive telly to keep Mark happy. We ended up only booking one room to keep costs down, so Mike had to be smuggled in, which wasn't difficult, the poor girl on reception seemed to be tearing off all over the place. Getting Mark into bed was easy enough and we all actually slept reasonably well. Our only problem was getting Mark off the bed and back into wheelchair the next morning. You would think they might make beds in disabled rooms a little higher so people can get back into wheelchairs a bit easier, but that's maybe too obvious. If we hadn't had Mike with us to help lift him off back into his chair I'd still be there now. Anyway onto why we went ...

Graham Flint seems a decent guy, down to earth and seemingly pragmatic. He only had one of Marks MRI scans because Pinderfields hadn't sent them down ... BLOODY USELESS!!

He took enough time to allow Mark to explain in detail what his situation is, how he's being affected by it etc etc, looked at the one scan he did have and from that he's certain Mark doesn't have a syrinx but what is occupying the gap in his spinal column is unusual and he didn't actually give it a name as he wasn't sure what it was. From Marks description of the pain and how and when it occurs he thinks it might be caused by 'tethering'. Tethering is when there is scar tissue around the area of the trauma and it attaches itself to the spinal canal (the spinal cord normally floats free inside the spinal canal) so when the spine is moved the spinal column can't move easily and it pulls causing pain. He can do an operation to remove the scarring and sometimes it is a positive outcome and cures the pain and sometimes it doesn't. There is a side affect in that removing one lot of scarring could cause more and create a syrinx that could move up the spinal cord and result in more loss of movement. That's the worse case scenario. We discussed how this would be done with the metal work he's got in and Graham Flint said he would remove that before he operated on the spine. It's not actually needed now, it's done it job. Mark was pleased to hear that, he feels he'd be better off without it now.

So Mark feels pretty positive about this, not least that he's talked to someone who had taken him seriously regarding the level of pain he's in and not just wanted to cover it up with drugs or trying to tell him it's all in his head. However, we've left it that Graham Flint is going to get the up to date scans, look at them, have a think about it then get back to us. Mark also has to have a think about it and decide if he wants to take the chance and have something like that done, bearing in mind the possible side affects.

Mark had tried not to put too much hope in getting a positive outcome from this visit but has come away thinking this guy could fix all his problems. My view is a little more reserved, he could come back after thinking about it and say he doesn't think he should operate because he doesn't see a positive outcome. I hope for Marks sake that's not the case but it is a possibility. So now we wait, it could be a few weeks before Graham Flint gets the scans from Pinders, then another few weeks before we hear from him again. It's just a waiting game. But at least there is a glimmer of hope now to go with the waiting.

The cat puts a paw outside and Mark falls out of his wheelchair

The cat ...... did I mention we inherited a cat?? No, well we have, long story but we now have a cat, it's going through it's reorientation process, it's not an easy process for this cat it seems, spends most of it's time hidden under a bed ...... you don't want to hear about the cat you want to hear about Mark falling out of his wheelchair..... well ok, it's not as funny as the stupid cat but this is what happened. We had friends visit for lunch, very nice, we sat around eating and having a little wine for most of the afternoon chatting, very civilised and pleasant. We went outside as they were leaving to have a look at their new camper-van, also very nice.  Mark now has a ramp from inside the garage, across the gap between the garage and the house and into the house. However, the entry point in the garage isn't quite finished and I said to Mark the other day, you need to sort this out you're going to fall out of your chair if you get it a bit wrong, yea yea, nag nag, it'll get done. Fine, what do I know. Anyway, friends get ready to leave, Mark wheels back into the garage to go inside, next thing we hear is AAAAARRGH, then a crashing sound followed quickly by 'BLOODY HELL'. We race into the garage to find Mark on the floor and wheelchair beside him. He had started up the ramp and got it a bit wrong and gone straight over backwards. I didn't dare say 'I told you something like this would happen', which was pretty good for me, those of you who know me well will be impressed that I held my tongue.  Anyway we untangle him, get the hoist from the house, manoeuvre it around him and eventually get him back in his chair ..... not hurt but shaken. Once he got himself straightened out he noticed his chair had scratched the car when it went over, well that set off another set of profanities, he's more p'd off about that than falling out of his chair. A good ending to what was a nice afternoon.

Do you want to hear about the dam cat now ..... no??  Well you're going to hear about it next time then, whether you want to or not haha.

We're off to our Birmingham appointment this week so keep your fingers crossed for us, we're staying overnight the night before so that's going to be traumatic me thinks.

Mark christens the new house by .........

falling out of his showerchair.

We had chaotic and stressful week leading up to moving, it should have been orderly and relaxed, that's how I'd planned it. However, best laid plans etc etc. We're having a new garage door fitted, it was two doors, neither of which Marks car would go through. The builder was organised and the door ordered. Sorted we thought. But the builder had other plans or rather cancelled his planned fishing trip and wanted to come early and get the old doors and central pillar out. The problem was the house was empty. So we have an empty house and a garage with no doors. One of the builders was having a look round the garden and when he looked over the fence he thought the long grass looked like someone had been wandering around at the back of the property. Mike was busy down in Sheffield so we quickly organised Marks sister to stay with him a couple of nights and I stayed at the house. John stayed a night with Mark and friends Steve and Elise came to the rescue and stayed at Wyke one night for us. So instead of being at Hewenden and finishing our packing the last few nights before we moved, I am the house in Wyke, travelling back each day to see to Mark then back to the house to work. So it was stress city the week before moving.

Anyway back to Mark falling out of his showerchair. Moving day went fine really, choatic like any moving but on the whole not too bad. The day we moved was Marks bathroom night, so I got him sorted in the bathroom, he's normally there at least an hour so I'm sitting watching telly, falling asleep, when there's a loud crashing from the bathroom followed by MAUREEN!!!!! Mike and I leap up and run to the bathroom and there he is, showerchair climbing up over the back of the toilet and Mark sprawled on the floor. Oh bugger!!
Well we know the hoist goes through all the doorways and that it works in the bathroom, if it had happened in what will be the wetroom it wouldn't have been that easy. Anyway with a lot of hoiking and shuffling him into a sitting position, getting the sling around and under him we managed to get him back in his chair. Thank goodness Mike was here, I'm not sure I would have been able to get him back in on my own.

We're a week into new carers and so far it looks like we've moved to exactly the same rubbish care company we had a Hewenden, all the carers are moaning about management, some are leaving because management is rubbish etc etc ..... and we have to pay for this!!

Got organised with new doctors but had hassle with getting last prescription, it got lost at the surgery probably with the doctors cos they were on strike the day I took it in to get signed - bloody nightmare - had to make two extra trips back to Cullingworth to get everything I needed, then we also needed a urine sample testing the day we moved to see if Marks bladder infection had cleared but the old doctor wouldn't take it cos technically we'd moved so I ended up carrying it around all day before I got to the new surgery. They said it would be no good now I needed to do another one the next morning. Did that, handed it in and so far heard nothing. So don't know if that's good news or not, knowing out luck they've probably lost the damn thing!

As for the house, its great, all the work we've done over the last 12 weeks has paid off and it's an easy place for Mark to get around now. I've still got about 6 months work ahead of me but it will keep me out of trouble for a while. I promise some piccies next time, feet just haven't touched the ground for the last couple of weeks, but it should calm down a bit now. PLEASE.