The hardest button to button

Every night I think of Joseph Merrick before I go to sleep. The man, less than affectionately, given the title the Elephant Man comes to mind because of one peculiarity of his life.

Because of the nature of his deformities, namely that the size, shape and weight of his head were so that he couldn't sleep lying down like most normal people do. If we are to believe the play and movie of his life he decided to lie down to sleep one night just to be like normal people. It was his last decision as his windpipe was crushed and he suffocated in his sleep.

My situation is less severe but similar and it's that way for two reasons. As we all know by now my lungs are in a horrible state of disrepair so if I lie down flat while I sleep my lungs compress, just like everyone else's do, but because mine are so scarred they can stick together and that makes them hard to re-inflate of a morning. I also have the PEG tube in my stomach to pump feed in through the night and you need to sit upright (or at least at an arse to back angle of greater than 45 degrees) so that the food can be digested like it normally would. I suppose it makes sense - we're not designed to eat lying down.

So I have an impressive amount of pillows all carefully placed to try and ensure I stay more or less upright through the night. I had a metal frame that's designed for this sort of thing but I just couldn't get comfortable with it so now I make do with my elaborate pillow formation.

It isn't the first time I've had to do this either. Immediately after my Bone Marrow Transplant I had to sleep completely upright for about a month because the radiotherapy had killed the mucous membranes that coat the oesophagus and prevent the acid from your stomach refluxing up into your throat and mouth. If you think that sounds sore it was the most painful thing I've ever endured. Considering I've nailed two of my fingers together with a nail gun, chopped the top off my thumb with a circular saw, and been run over by a forklift truck that's saying something. The pain was kept at bay with morphine, which was not very nice at all. Anyway I've talked about all that before.

So the sleeping upright thing is going ok but it's actually not the easiest thing to manage. Sure you can do it on a bus or a train for a wee while but to get a whole night through without somehow slipping down is surprisingly difficult. When I do wake up lying down all it means to me is that it takes a lot longer for me to get a breath in the morning and I can have a slightly upset and cramped stomach; nothing compared to what poor Mr Merrick went through.

I can show you the world; shining; shimmering; splendid

I've avoided saying anything over the past month or so because I simply couldn't trust my mind to come up with something comprehensible. I've been using diazepam in that time and my mind has been doing all sorts of wandering.

The reason for said drug has been that I've damaged cartilage and ligaments around my ribs so these were prescribed to relax the muscles. They worked a treat but my mind was certainly not my own for any of the time I had any of it in my body.

I'm only taking it very sparingly now so it's back to reality again.

I was at my monthly visit to the Beatson Oncology Centre on monday and had a great chat with my consultant about how things are going. The transplant team want certain criteria fulfilled and my haematology team are concerned about some of them, or at least doing them all at once. I've fulfilled two out of three of the things they want, which as Meat Loaf so eloquently put it, ain't bad.

I'm now the correct weight but I'm going to keep putting some more on in case I lose some if ever I get an infection. I've stopped one of the drugs they wanted me to come off and now there's a dialogue opening between the two teams about the third criteria which is about anti-fungal prophylaxis. It's the drug that was used to beat my aspergillus pneumonia two years ago and I've remained on it since to prevent a relapse. Being honest I don't' really know why this is an issue because post transplant I'll be put on an anti-fungal again. Perhaps a change of specific drug will be the conclusion. I'll let the docs work out the details and carry on as normal.

Also this week I went to visit the Maxillofacial clinic to meet the surgeon who dealt with my dental hygiene post Bone Marrow Transplant. I need to get a little bit of work done to make sure everything is in good order prior to transplant as the immunosuppression given afterwards will leave me open to infection and the first port of call for that sort of thing is the mouth so I'll be going back to the duo of mouthwashes that I used back when I had the BMT. At this point my gums will recede and my teeth will move a little so I have to be observed keenly. It's not the first thing you think about when thinking of transplant surgery but it is really quite important.

I've got a booklet from the transplant team that I've been using with visitors. I used to be very careful and only divulge the bits of information I was happy to dole out to people, and that depended very much on the particular person. Now I'm giving them the booklet to read for themselves so they know a lot more. It also allows them to ask me questions about any aspect of it all. It's not a strategy without flaw and it can be a tough process going through it with someone but it's so much better than how I used to just filter out the scary stuff.