15 minutes

So the interview I gave the lovely woman from STV news aired last week as part of the ITV From the Heart campaign. It being a section on the news I never really expected it to be more than a tiny wee section of the 45 minutes we had chatting. My part in the feature was to explain what it's like to be waiting for the phone call. Here, watch it for your self and make your own mind up

http://youtu.be/Xv_OWIhoLgs

Personally I'd have preferred it if we had longer so all the bits where I spoke about how important it is to let your family know your feelings about being an organ donor or where I talked about how I find things so much easier being the patient than I sometimes think my family find it because they can't always help were what got aired but those points were covered tremendously well elsewhere in the campaign. I can't really complain about my wee slot except now the viewers have a vision of me struggling to get showered that they could probably have done without. Having said that context is king and in the context of that wee segment what you didn't hear was me explaining why it is such a difficult process. I have to turn my oxygen up for a while pre shower to get ready for the exertion involved. I have to undress slowly because even that tires me out and I then have to just sit on the toilet seat with my head down at my knees gulping for breath. It's only when I feel fully ready that I swing myself round to my board across the bath and slowly proceed with cleaning myself and, not that you would know it from the video, that's when I usually shave. It is a long slow shower and the process of getting dried is no less strenuous than getting undressed is. The oxygen remains at a higher level than it normally would until I am fully dressed and breathing easy again. Everything is done slowly, that's why I said it's like a military operation. Everything is meticulously organised.

Now I don't tell you that because I want you to feel sorry for me. I want people to understand how difficult things are for me but I don't want pity. Sympathy yes, but pity no. I'm not sure I can adequately explain what I mean by that but there is a clear distinction in my head. Someone who pities you would (and do) patronise you in ways that they don't even understand they're actually doing but someone who sympathises simply says "That's a shite state of affairs" and gets on with talking to you as normal. I've spoken before about how grateful I was post bone marrow transplant to meet an old school friend's mum and for her to just ask straight out how things were going and not to talk to me in any way differently from how she normally would. That is sympathising but not pitying. I find it more difficult to describe the other way round but I know it when I meet it. I've seen it in the eyes of people I've met who ask about the nasal canula that supply me with oxygen and you can see the cogs turning in their head thinking "Poor bastard, I'm glad it's not me". And that I feel is probably the difference. Someone who sympathises with your plight does so from a place of caring for you, not from selfishly thinking that they're just glad it's not them. Aye, maybe that's it - with sympathy it's about you, with pity it's about them. That's not to say they're bad people - they're really not. I just don't need to be around them. Thankfully, due to the amazing friends I have, a rarely have to be.

Graffiti with punctuation

I watched the film Contagion a few nights ago. It's a very good and realistic film about what it would be like if there was a global pandemic of an unknown virus. It looks at the everyday stuff like how it would be passed on all the way up to governmental attempts to control it. In light of the fact I was one of the unfortunate souls who actually contracted swine flu in the last of the lower level one of these things I found it incredibly interesting just how much it reflected the response from the broader population about any of the last few of these things (SARS, avian flu, swine flu) but the bit that really got me was that in it there was a blogger who wrote about how some alternative therapy actually carried the cure. When talking to a scientist who is working on it, the scientist pithily remarks that "Blogging isn't writing, it's graffiti with punctuation.". Now this obviously borrows heavily from Truman Capote's famous line about Jack Kerouac's book On the Road. To whit, "That's not writing, it's typing." but it is still an incredibly important point. There is no need for a blogger to provide provenance for what they say as it's purely opinion based and not subject to the same scrutiny as 'print' journalism. The blogger in the film got better but whether it was based on the special, herbal cure he was promoting (and making money from ) or whether he was just one of those people who could just fight off the infection is never made clear but he, as a scientist would put it, regresses to the norm, so there's no way to know.

It's important to mention the media this week, seeing as I'm graduating from my position of graffiti artist to the relatively lofty heights of an interviewee on the Scottish National News with my opinions on transplants, notably what it's like to have one but even more so what it's like to be on the waiting list for one. I'm in a relatively small group of people who have had one and am in need of another so a person from NHSBT/got in touch to see if I would be interested in being one of their people all over the country taking part in a week long push to promote blood and organ donation in their regional news programmes. So I'll be on the STV news on Tuesday the 12th hopefully getting my point across without making too  much of a fool of myself. I know I'll cringe seeing and hearing myself on the telly but it really is important to highlight the need for more people to sign up for organ donation (and blood and bone marrow donation for that matter) but also to reinforce the point that everyone should let their family know what their feelings are on the subject. There are a lot of organs that never get harvested because, even though the person who has died wished for their organs to be used for donation, their family objects because they don't want that and they don't get used. I sympathise completely with any family's wishes on that front but are we really to take their opinion over that of the person who put themselves forward for donation in the first place? I'm not so sure. From a purely selfish point of view I would like us to adopt an opt out system where it is assumed that everyone that can be used as a donor will be unless there is an objection from the family. I feel in a very short time people would become used to this and it would rapidly become completely accepted as the norm so why don't we try it?

It will only be a couple of minutes on the news but it's an incredibly important message so if you're at all keen to see me in action tune into the STV news at 6 o'clock on Tuesday. For those outwith the STV region I'll try and get a youtube video of it up as soon as I can. I spoke with the lovely interviewer for about 45 minutes so all the very best to her in her attempts to edit it down to something useable.

It was actually my second interview last week as on Monday I had undergone a very similar interview about what it's like to be a patient waiting on the phone call from the transplant people. This time it was the team from the University of Newcastle who are carrying out the clinical trial study on Ex-Vivo Lung Perfusion, the procedure where they take previously unusable lungs and put them in a modified heart lung bypass machine and put them through a process with oxygen saturation and perfusion of solutions that make many more lungs viable for transplant. The Dr who interviewed me started by saying that it'll only take about half an hour of my time. Obviously not knowing me very well she was somewhat taken aback when we were still chatting nearly an hour later. Still, it's all useful information for the team who are using this cutting edge technology.

As I've said before I often get sought out for these sort of quality of life questionnaires as I tend to be a lot more expansive than the average patient. I've also given a couple of lectures to teams of docs and nurses which they've been incredibly positive about because it's far too easy for them to see their patients just as puzzles for them to solve so to engage with one as a real person who can actually teach them something is an important lesson for them. All too often I get used when I'm on the ward too as the registrars like to send the medical students in to me as they know I'll put them through their paces in a kind way. I get a hell of a buzz from it I have to admit. I suppose it appeals to the teacher in me.