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.