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.