...and remember what peace there may be in silence.
So says the start of the Desiderata by Max Ehrmann, which hangs in a frame at the front door of my house. I often sit and read it as I am filling up my portable oxygen cylinder before any venture out into the big, bad, scary world. I say scary because I now find myself to be a little anxious when I am outside my house and away from the safety of the oxygen concentrator and it's permanent supply of oxygen. It's not so bad when going to hospital appointments because I know there's always help at hand when I'm at one of those fine establishments but recently I have knocked back every offer of going out somewhere, in fear that I won't be comfortable or that something might happen with the liquid oxygen cannister. All very stupid when I stop and analyse it but there you go, it's there. Paul Stefan Kilday is actually scared of something.
Before putting fingers to keyboard tonight I decided to re-read this whole blog from beginning to end and while I do have a certain turn of phrase I can go on a bit. This post will probably be no different but if I make a point I have a terrible habit of repeating it. This tautologising bollocks isn't down to my thinking that you, my lovely audience, aren't getting it. It's simply that my drug addled mind has forgotten that I had said that point before, or that I thought it was so clever that it bore repeating.
The other thing I noticed is that I am almost relentlessly upbeat about my position throughout my posts. A few dips here and there but nothing utterly bereft of hope. That isn't to say that this is representative of my time, only that these more lucid moments where I am in general good spirits happen to coincide with the times I decide to put something down in writing. When I'm not feeling the best I don't feel much like typing it all down.
With that it mind I'm going to try something unique. Whilst in relatively good spirits, as proven by my actually typing this, I'm going to share my worries about my potential treatments with you from a coldly clinical point of view.
- Firstly I have to address the heffalump in the room. There is a chance I'll get an opportunistic infection before I get a transplant that is strong enough to not only take me off the list, but to shuffle me off this mortal coil. I take all manner of drugs to stave off the worst infections and haven't been an in-patient in well over four years now so I'm doing well but that doesn't stop me from worrying what the next infection could do.
- Secondly, the transplant itself. 10% of patients die on the operating table. That's just a stone cold hard fact of the matter. All these patients are in real danger of not surviving the process because of their condition and it is an incredibly invasive procedure. It actually amazes me the stats aren't worse than they are.
- Thirdly, rejection rears its ugly head. My body, thanks to my dear sister's bone marrow, struggles to accept that even my own internal (and external for that matter) organs are my own, albeit less so lately, so what are the chances it will cope with a third set of tissue in my body. Will it be able to tell self from non-self and if it does will it wildly over react and reject the lungs? A massive drug regimen is in place to cope with all this stuff - I've been through it before so I know what I'm signing up for and hopefully it'll work well.
- Worry number four is that, even if I do escape rejection that peripheral bits of damage that have been done to my body in the last five years (in reality since Oct 2000 when I was diagnosed really) will mean that I won't be able to go back to my preferred career of teaching. After all, who thinks it's a good idea working with kids when you have a suppressed immune system? Of course I have a plan for this, I go back and complete the PGCE and then work in a Further Education College. I did that as part of my training and they gave me a job on top of my training to take the night time A-Level class and I loved it so maybe that's where my path lies.
So there you go, the worries of a tired and frustrated man, all through the prism of a relatively clear mind. No point really worrying about them as they're all outwith my control but then it's never the things over which you have control that you fret over, is it? I'll try and stay as positive as this blog paints me out to be. It won't take much effort - I'm mostly that guy anyway.
