I spent ten days writing and then re writing this blog post as there has been so much going through this tiny mind of mine and I never knew how to start. Then about half an hour ago I was back in my own den of tranquillity, the toilet, contemplating the meaning of life (actually I was contemplating where the hell the toilet roll was) when finally it happened. No, not that thing. Oh crikey believe me no waiting there. I think I fell asleep on the loo I had been in there so long. What did happen is that the haze that had really engulfed me mentally for the last ten days lifted. From spending days debating the meaning of life with myself, questioning what the future was going to be like and if I really can make a go of it, worrying about how much Justine and the kids had been put through and finally whether QPR could gain enough points to avoid relegation I realised that actually I needed to stop feeling sorry for myself and just get on with it.
Why was I worrying about a bowel transplant when you have Newsroom to watch? Please tell me that you have seen this one? For those of you who read my blogs regularly you will know that my all time favourite tv show was The West Wing and secretly I still want to be Sam Seabourne! Newsroom is by the same creator just based on a nightly news broadcast. I've attached the opening scene link below if you fancy a watch!
And on top of this Aaron, our eldest has just started studying politics for A levels. He may not share my love of the mighty QPR but like him I studied politics and couldn’t wait for the debates to start. Having him come home and tell me his views on first past the post voting system well; it was like that same warm glow all inflammatory bowel disease patients must feel the first time home from hospital when you go in to your own bathroom and see andrex toilet tissue and not the thin hospital tracing paper on the wall. It is amazing how this diverse range of random thoughts can go through my head. Some psychologist will probably tell me how strange I am; mind you I don’t need a professional for that.
There is always a lot going on when you are a patient especially a long term one. With Crohn’s Disease I was part of a relatively large community and got to know the drill. Intestinal failure saw me part of a smaller one and actually the range of potential options were not so wide so it was containable emotionally. A bowel transplant puts you in a very tiny community and for the first time that has found me wrestling with all sorts of confusing thoughts that usually I would have batted away. The overriding question has been whether my life really is going to work out ok? I mean this in three ways. Firstly medically am I one bad episode away from problems or am I doing exactly the right thing and it will all be ok? Secondly Justine and the kids are utterly amazing but what impact is all of this having on them? And finally I talk and talk and talk about the positive impact patient to patient interaction can have on your health and your life but am I spouting rubbish? Can I actually make a difference or am I a delusional patient who’s had too much morphine?
As my time on the toilet reminded me actually you just have to deal with the cards you are dealt and the only person who can influence the answers to any of those questions is me. In the bowel transplant team at The Churchill in Oxford I have world leaders so as long as I fulfil my side of the “contract” then I’m in safe hounds. I can’t answer the second question and that still troubles me daily. I just have to believe that as long as I listen to them and do my best by them it will work out ok. As for the final question; I really hope that in some tiny way I can help others. Maybe I will never be able to answer that one. I don’t do it because I want anything back I do it because I believe I have experienced a very long journey that can help others who are at different stages on their own. In some tiny way it can be of benefit to share experiences. After all isn’t the patient supposed to be at the centre of health care globally?
I’m writing this from my hospital bed having been admitted after another relatively minor blip. What felt and still does feel like flu became temperature spikes and blood results indicate a viral problem. That combined with a small hernia at the site of my stoma reversal has put me back in for hopefully just a short stay. Yes physically I do feel rough but I know it will pass.
This post has had more changes to it than any previous one. Not because my beloved QPR are yet to win a game in the Premier League, although that has caused a high degree of turmoil in my life but because this last period has just been a very hard emotional journey on my bowel transplant recovery. I try and be as open as I can about how I am feeling but I just couldn’t seem to adequately articulate what’s being going on in that pea size brain of mine. I guess that if you are still reading at this point it is either because you really have nothing else to do or maybe because you can understand a little of what I have talked about.
Worry, guilt, frustration and discomfort are words I often use when talking about my bowel transplant and now I will add confusion and guest contributor to the globally acclaimed QPR match day programme.