Our wonderful benefits

Our wonderful benefits office strikes again. A while back we had a battle just to get a form from them, it took weeks to come so it was precious, we treated it with kid gloves, filled it in carefully with our friendly Benefits Officer, entrusted it to Royal Mail to get it back to them.  We had to pay for a letter from the Doctors just to say Mark needed a wheelchair indoors .... how a tetraplegic was going to suddenly NOT need a wheelchair as soon as he went through his door is anyone's guess!!  So. I ring today to follow up on our precious form because we've heard nothing back and guess what??????  They tell me they don't have it. You've GOT to be kidding me. What do we have to do just to get Mark sorted with the very basic entitlement. How are some people able to get away with benefit fraud when it's so sodding difficult to get anything at all!!  Seems we have to start the process all over again now.

On a more positive note, while I was in Greece, with the help of friends (thanks Mirka and Neil) I managed to get all the details the Consultant here needed to be able to operate on Mark and hopefully take the fixture out. We sent it straight off and are now waiting to hear for sure that he will operate. Although Mark has had a difficult decision to make because the operation doesn't come without some pretty serious outcomes, like the possible loss of movement in his hands, he is pretty certain he will go ahead with it. Last night he forgot to take his bedtime meds and has been in bed all day in serious pain and feeling really poorly, those times, on top of days on end when he can't get out of bed because of the pain has made the decision easier for him. He just wants to get on with his life.

On an even more positive note, he's really enjoying his new wet room and having a shower every morning:-)

Tough week for Mark

Poor Mark has had a tough week. Being in a wheelchair is one thing but all the other crap the poor guy has to put up with is another matter all together. Just over a week ago he had his hemorrhoids banded. A small thing you might say as he can't feel it anyway, but our day started before 5.30am to be at the hospital by 7am. Most people would have jumped out of bed just in time to get dressed and make it to the hospital, but there's none of that in our house. I have to wake Mark up at least 30 minutes before he can even start moving around, it takes me another half hour to dress him and nearly another half hour to get ourselves out of the house and into the car. We arrive at the hospital with minutes to spare to then sit (or in Marks case) lay around until 11.45 till his turn. It only took 15 minutes from leaving the room to having it done and getting back to the room ...... nightmare!!

A few days later he fell out of his shower chair AGAIN. This time Mike wasn't here to help me but luckily the carers were but trying to get Mark into the hoist in the confines of a bathroom then back into his chair is a major operation. The carers aren't supposed to help with anything like that they're supposed to ring for an ambulance and leave the poor guy on the floor till it gets here. I can sort of understand why, if they were constantly hoiking and moving big people like Mark they'd all be off with bad backs. Of course it doesn't matter about my back, it's dispensable it seems.

A couple of day later, he's got dysentery. I won't go into any detail and I hope you're not eating while you're reading this but you can probably imagine what that's like for someone in his condition. The first day, I dressed, undressed, washed, dressed, undressed, washed, dressed, undressed, washed, dressed in the space of just over an hour!! Knackered didn't begin to describe it. The last time I got him up into this chair, I got straight into his bed and stayed there for an hour.

We've been trying to chase Pinderfields to get Marks Greek notes, we've been asking for 2 weeks, have we got them yet, have we hell. Everything moves very slowly in the world of the NHS. I was hoping to take them out to Greece and find out what we need about the fixture, but that's not going to happen now ....... dealing with anyone about anything slightly out of the ordinary is a nightmare.

Good news on the wetroom though, it's well underway and not looking too shabby.  Mark is really looking forward to being able to have a shower in the mornings, the warmth gets his body going and makes him feel a lot better. Something he could really do with right now.

Was going to make curry for tea tonight, but under the circumstances with Marks current condition, I decided that might not be one or my better decisions!!

News from Birmingham

Finally we have some news from Birmingham. Graham Flint had to request Marks most recent MRI images that Pinderfields omitted to send prior to our appointment and having looked at them and decided that there has been no change since the scans in December. Therefore with no further information his recommendation is thus:

Looking at the internal fixation apparatus I did wonder whether some of the spinal pain might be mechanical in origin but, then again as the pains are widespread I suggest it is neurogenic (posh word for caused or affected by the nerves).

It is difficult to know what to do. Unfortunately there are no investigations which would substantiate or otherwise my suggestion that his pains might be related to cord tethering. I would be prepared to re-explore Mr Wycherley's spine, remove the internal fixation apparatus and carry out a judicious exploration intradurally (that means look at the membrane that surrounds the spinal cord to see if there are any visible problems). End of consultants letter.

So at least someone has an idea of a way forward. That's really positive. There are dangers with such an operation, the most dangerous is that if the spinal cord suffers any further damage due to the operation Mark would loose more sensation / motor function in his hands. By rights with spinal damage at Marks level he shouldn't have any hand functions so he is really lucky with the dexterity that he does have. His dilemma is he may have to make a trade off, a very difficult decision. Having said that his quality of life is severely hampered by the constant pain he's in, and the only way to control it is with morphine, which is nasty stuff and he doesn't want to get hooked on that long term. The next step is probably to get hold of all the original surgeons notes and get them translated so Graham Flint has a fighting chance of finding out what is actually in his back ...... not sure how easy that's going to be.

Some further good news, after much discussion between the council and us and the company doing the wetroom they're finally starting it this week, wonder of wonders. Mark can't wait, to be able to sit under a shower in the mornings will be heaven.

Some more good news, I'm having a holiday, hopefully going out to Greece to see friends and have some total relaxation........ soooooo needed after 18 months of non stop stress and very hard work getting this house sorted.

I've been underground for a while, haven't felt like writing or sharing what's been going on to be honest. Three weeks ago I went for a routine breast scan, then thought no more about it. A week later the letter came asking me to go back for another scan and still I didn't really think too much about it, apart from 'oh no more squashing'. So I get there for the second scan, then an altra sound, then to be told they can see calcium deposits but they're not sure if it is just calcium deposits or calcium deposits that are hiding cancer. Great, just great, as if we haven't got enough going on. So I get the lengthy explanation as to what they will do if it is positive, ie cut it out followed by radiotherapy if necessary. While this is going on, I'm just thinking 'who is going to look after Mark while I'm in hospital???  Why does life have to get so complicated, I just want a simple quiet life. Anyway, I'm then sent off for a biopsy, that turned into a 10 needle biopsy and although it was under aesthetic, it was still rather uncomfortable sitting there with one boob squashed to the thickness of teacake for a good 20 minutes while they stabbed me continually. Then for another weeks wait, with a boob black and blue from the squashing a needles, wondering, worrying, can't help thinking the worst considering how our last 18 months have gone. So it was head down, ignore the world and work hard on the house and garden with Mike for the week. Apart from one day I went walking with my friend Elise and was so knackered when I got home I couldn't think of anything. That was a long week and going back to the hospital for the results was stressful. After being led into the little room, offered a seat, silently screaming 'just get on with it for gods sake' she said 'well its all good news today I'm pleased to say' I breathed a huge sigh of relief as you can imagine and didn't really hear another word she said apart from make sure you go to your next 3 year routine check. It seems it's easier to share all the good and bad about Mark, but when it was me, I just wanted to hide away and not take part in the world.

Speaking of Mark, he's about the same, a few days he's out and about, then a day or two in bed. His latest escapade got him locked in on an industrial estate. He was at his friends business and as the afternoon went on his pain levels got out of control and he got back in his car, took some oramorph (oral morphine) and fell asleep. It came time for everyone to go home, so he told them all to go, asking if the gates would be locked, they assured him they wouldn't be, he'll be fine. So he has another snooze, wakes and rings me to tell me he's leaving. I get another phone call 2 mins later saying he's got a problem, he's locked in. It could only happen to Mark!!

We're still waiting to hear from the Birmingham consultant to see if he's willing to operate on Mark.  Meanwhile we're having another battle with the benefits office about Marks benefits and now words with the Council about Council Tax. They're upset because we didn't inform them that we'd moved in, however we had a man round a few days after we got the keys, measuring up to check we were in the right banding. He wrote to us a few days later telling us we were being put in a more expensive banding - thanks for that - so we assumed they knew we were there .... seems it's not that simple cos no-one else in the department has any record of us moving in .... you gotta love public offices!!!!  And the benefits office wants to know where every penny of our money has been spent before they'll change his benefits, I am lost for words as to how anyone cheats the system, we're under such scrutiny it's unbelievable. It's enough to drive you to drugs!

Oh by the way, Mark got out of the industrial estate and made it home eventually.

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.