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.

All I ever wanted, all I ever needed is here in my arms

My life very suddenly got annoyingly loud and then disquietingly silent. The oxygen concentrator I use to help me breathe developed a fault overnight and the alarm kept going off so I just turned it off and used the oxygen cylinder I keep for times just like this. It's quite incredible just how quiet the house feels. The concentrator has been there for so long that that we no longer really notice the noise it makes but its absence is eerie.

It makes me think of the prayer, the Desiderata by Max Ehrmann, that I see at the bottom of our hall stairs every time I go past. It starts 'Go placidly amid the noise and the haste and remember what peace there may be in silence'

It's a phrase I've held close to my heart for a long while as it reminds me of my dad. The other prayer that has this effect is the serenity prayer.

God grant me the serenity to accept the things I cannot change;

the courage to change the things I can;

and the wisdom to know the difference

Noble sentiments obviously but He and I disagreed on one part of it only, the first few words, God grant me. My stance was that these are things I have to fight constantly to achieve without the grace of God deigning to bestow such gifts on me. He believed that my ability to display those characteristics was indeed God given.

For all I don't miss church, I miss talking with my dad about his faith and how important it was to him.

The sun and you and me and all the stars that we can see

I went out somewhere that isn't a hospital for the first time in months on sunday night. I went out to the theatre to see a science show called Uncaged Monkeys. It's a spin off from the BBC4 radio show the infinite monkey cage with Brian Cox and Robin Ince.

There were about half a dozen short talks on various aspects of modern science. It was all very informal and actually a lot funnier than I expected it to be. Having spent a lot of my spare time reading assorted science stuff and watching all manner of tv shows on the subject a lot of the material was familiar to me but it was more expansive on a lot of it than a normal show would have been so it was great.

It was the first show of an upcoming tour so I'd recommend it to anyone else who quite likes having their brain exercised. You can get a bit of a taste for what it's like by listening to the Uncaged monkeys podcasts.

It being the first show they were really testing it all out and it was perhaps a little on the long side as even the most attentive person begins to lose focus after a couple of hours of demanding material. I found it really difficult to be stuck in one position for so long and was physically drained afterwards. On leaving I had to just park myself on the kerb outside to try and regain my breath while my friends stood looking concerned and my uncle was away getting the car. I recovered quickly enough but it's not great fun to feel that out of breath.

I'm glad I went out but I've been feeling the effects over the last few days. Despite being far from an exerting trip out it really was exhausting for me. Still glad I did it though - it's great to do something vaguely normal once in a while.

What do you do when all your enemies are friends

I have a new, as yet unnamed, niece.

She'll hopefully get home soon but as she has a wee heart murmur they're wanting to keep an eye on her for a day or so. Apparently these things are quite common in newborns and sort themselves out quickly so it's not a concern but it'll be good to get her and her mammy home.

I've been quiet because I've been a bit under the weather again. Just a couple of chest infections that just make life quite difficult.

I've been thinking over the last few weeks about my meeting with the transplant team last month. I've been digesting what we were talking about and the thing that's been dominating my thoughts is that there's a chance that I won't be able to go ahead with the transplant. I've to go down to Newcastle for four days soon for a barrage of tests to check out all the things that would rule me out and I'm really worried that they'll find something that does.

The thing is I'm never done getting on at my friends for worrying about things that are outwith their control so why am I fixating on so many things that I can't even decide which it is that I'm actually concerned about but I know that I'm more nervous than I've been about anything in my life. The reason for that is of course that my life actually depends on what happens and that kind of focuses the mind.

When I tell anybody about my worries they all tell me not to worry which is easier said than done. The people I usually turn to to talk about these sort of things, and who don't tell me not to worry, are rather annoyingly living in Sydney and San Francisco so it's difficult to get hold of them for a good long chat about it all.

The other thing that arose from that meeting with the transplant team is what it might be like to live post transplant and that has been worrying me as well. I'm rapidly coming to the conclusion that even if it all goes perfectly well I'm not going to be able to get my normal life back. That's not so big a deal as I've got used to having to change my priorities markedly over the period of my illness but that doesn't mean that I'm not worried about what my life will actually entail. The main thing I am concerned about it relationships. I've really excluded myself from anything of that ilk over the last wee while because it's quite simply too difficult for me but that was always in the knowledge that it was temporary. I've reconciled myself to being alone for a while but that doesn't mean that I don't get lonely from time to time. Life post transplant better offer me the chance to get involved in that sort of thing again as I miss it.

They also spoke about survival rates and that has focussed my mind on the nieces and nephews. I know that this is what will kill me eventually. I've come to terms with that. I don't plan on it being any time soon but I do know that either directly or indirectly it is my rejection of my lungs that will eventually get me and that gets me thinking about what I will miss from their lives.

It's orbiting at 90 miles a second, so it's reckoned...

I miss being a teacher. No matter how your day went there was always at least one moment that made me glad that's what I was doing with my life. It being Science makes that a little bit easier obviously as the kids are much more open to learning than I've observed them to be in other subjects.

I got a little bit of that buzz again at the weekend when I got in a lengthy discussion about the universe with my 11 year old niece Maria. It started off with us just talking about how many stars there are in the sky compared to the grains of sand on earth and covered all sorts of stuff about what it takes for life to exist and whether it could happen on other planets.

She was most fascinated though by the knowledge that every particle in her body has, at one stage, been made in a star and showed genuine excitement to know that higher metals like gold are only made in supernovae.

I've been reading loads about all this stuff in recent times, notably the two Carl Sagan books Cosmos and Pale Blue Dot. I've also watched the TV series that accompanied Cosmos which was incredible. I've also been ploughing my way through a few books by Stephen Hawking and Brian Cox to try and polish up my physics a bit.

I've wanted to do so for ages but was always too busy to manage so I suppose this is the benefit of having as much spare time, although I do only get to read things when I'm feeling well enough. My attention span has improved dramatically over the last few months and I've been trying to make hay while the sun shines.

I've also been helped by the BBC and their fantastic Wonders of the Universe show, presented by the aforementioned Dr Cox. It, and its predecessor Wonders of the Solar System, are wonderful examples of what public broadcasting should be about and genuinely make the BBC respected worldwide.

I don't have classes that I can put on to these things but the small victory in at least getting one kid interested in science has fair picked me up.

Stabbed the cerebellum with a curious quill

I've been putting off talking about my friend Gav who died recently. He had gone missing from his home in Glasgow back in November but his body was found near his home in Fife a few weeks ago. Seems he had decided to go there to die. The last time I saw him was at his 30th birthday party and he was in rare form.

I first met him in my time living in Aberdeen. He was one of my then girlfriend Kat's best friends so I was actually quite tense about meeting him, hoping that we would get on well, worrying in the way you do when you start going out with someone and really care what their friends think. I needn't have worried as we hit it off pretty much straight away. All the normal student topics like music, films, politics and philosophies of life were covered and we just got on brilliantly.

I think if one thing is true of Gavin it is that he would hate anyone talking about him to resort to cliché so I'll try and avoid a saccharine sweet version of things.

You see we actually got on so well because Gav liked people that challenged him. If Gav thought you were at least as smart as he was (which was very) then he was brilliant fun to be around. We disagreed on any number of subjects but as long as he thought you were making solid arguments (even if he disagreed with your conclusion) then you would get on great. It was almost like we were engaged in a really slow moving, long-term chess game. I could go for months without seeing him but we could always pick up where we let off the last time we met. I didn't expect things to end with him knocking his king over.

With his wicked intellect and wit though there came some frustrations, which often manifest in his behaviour towards his friends whereby he would often just write them out of his life for a little while. I always worried when he was in the middle of one of those periods, not just for him but for those he was ignoring as it often really upset them. I've since found out that he suffered terribly from cluster headaches and wonder if these things are related and he was just carving out a little space for himself when he wasn't feeling his best by being cruel to his friends. I know I've done similar things.

Like I mentioned earlier it was often at very large intervals that I actually saw Gav, but knowing that I'll never bump into him again is a very strange feeling indeed. Of course there are many, many people who will feel that far stronger than I do and that's who I really feel for. I hope they find some peace.

This is a pic of the three of us in the Bobbin in Aberdeen on Superbowl sunday, all still recovering after the party we had for Katherine's birthday on the friday. Obviously much happier times.

Bless ye pal

In other news I've been laid low with a viral bug so not even been up to turning the 'puter on till today. Feeling much better now but still a bit wheezy. Felt a bit scunnered by it all I have to admit but that always passes when I get better.