Monthly Archives: November 2006

The hardest thing to come out of my recent downturn in form – as it were – is the adaptation I’m having to make to the way I do things and the things I do.

Yesterday, my big bro took me out in the afternoon to catch the new Bond movie (which is fab, incidentally, if somewhat dumbed-down Hollywood in parts) in the Xscape Cineworld in town. The trouble is it’s about a 200-300 yard walk from car to screen, including going up a floor, which took me a long time to negotiate and a lot more energy than I was used to.

I’ve recently become accustomed to walking a lot slower than I used to, although I did go through a patch of setting off at marching pace for 10-15 yards before being pulled up by unhappy lungs protesting at the work rate. I’ve now learned to start out slowly and continue in the same vein, but this latest infection has left me with a real need for permanent oxygen supply – something my pride has not quite caught up with.

Last night, K had some old work colleagues over for a girlie night in, which I couldn’t avoid and actually really enjoyed (she’s really quite girlified me). But even though it was in our place, and spent entirely sat on the sofas in he lounge, I couldn’t bring myself to wear my O2 in front of the group.

Silly, I know, but a good example of the adaptations I’m having to make to carry on as normal. I’ve got to get used to the idea that I’m going to have to have my nasal specs on when people are here and, more troubling for the moment, I’m going to have to get used to taking a portable cylinder out with me when I leave the flat.

It’s hard to describe the battle of heart and mind that’s going on at the moment – my head knowing that things are not only easier but also much better with the O2 on, my heart not wanting to be seen as a “sick person” by all and sundry who see me in the street.

One of the few blessings of CF is that to the untrained eye (and often to the trained, if you ask medical students patrolling the wards in hospital), the average person with CF doesn’t look any different to the average person without CF. Slightly skinny, maybe, but skinniness is somewhat in vogue at the moment anyway (for the girls, at least) so it’s not a big thing.

Going out with nasal specs and an O2 cylinder is another matter altogether. No one else does that. “Normal” people don’t travel adorned with extra air. Which means admitting to the world that you’re not the He-Man you wanted them to think you were. Or, at the very least, admitting that you’re “different”.

It’s one of life’s little ironies that I’ve spent such a lot of my life championing individuality to my friends, family and, more than anyone, the kids in my workshops, and now here I find myself aching to conform, to fit in, to blend.

But needs must, and I know I’ll come around to it. I just need to be more forceful with myself and understand that if I’m wearing the O2, I’ll be able to do more than I can at the moment, and hopefully “freedom” will be the spur that allows me to come to terms with it.

Failing that, anyone with any other ideas, please let me know!

Blogs. There’s millions of ’em. The world has blogs coming out of it’s ears. The world has blogs coming out of pretty much every orifice. So why am I adding to the over-crowded madness and what’s this all about?

I’m here for me, mostly, but I’m also here in the vain hope that someone, somewhere, someday may find some useful knowledge or comfort in the words that will follow and the journey I’m embarking on.

18 months ago, in June 2005, I elected to go onto the active transplant list for a double-lung transplant. I have Cystic Fibrosis and over the course of a few years I had slowly declined to the point where my specialist team at the Churchill Hospital in Oxford arrived at the conclusion that I was now eligible for transplant.

I say “eligible” because transplant is a very odd thing: to be considered for the list you need to walk a very fine line between being ill enough to warrant a) taking the chance of a new life away from someone else on the waiting list and b) taking the risk that such a massive surgical procedure places on your already frail body, but at the same time being well enough that, complications aside, your body will have enough in reserve to withstand the rigours of surgery.

Since I went on the list in the middle of last year, my health has been stable and I’ve been relatively well. With CF, things are all relative.

In September this year, however, things took a turn for the worse and I’m now facing a countdown to the end of a race which is going to end on one of two sides of a coin. Only 50% of people who go on the transplant list actually receive the organs they require to go on and live a full and happy life. The other 50% die while they wait.

Throughout my life coping with the ups and downs of CF – and believe you me they are myriad – I’ve learnt one thing above all others. If you don’t laugh, you cry. Hence the title of this blog.

Whatever happens over the coming months and years, wherever my health takes me and whatever else life throws at me, this blog will be here not only to document the process, but also to remind me when the going gets to its very toughest, that the world is really a very funny place and you have to keep on smiling, because the other options are too dark to think of.

My intention in this blog is to chart my day-to-day progress, both physically and mentally, as I race the clock towards it’s ultimate conclusion – one way or the other.

I’m not (quite) vain enough to think that I’m going to change the world with a little diary-cum-biography-cum-progress report, but as with all things that I do, both for the Cystic Fibrosis Trust and in my life in general, if it makes a difference to just one person and helps them get through a tough time, helps them realise they are not alone or just shows them that life’s not always so bad after all, then it will be worth it.

Whatever you do in life, always have courage in your convictions – throw yourself into it with all your energy and strive every day to be the best that you can be. You truly never know what’s around the corner and regrets in life are the hardest thing to deal with when you face a ticking clock.