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Just 12 months ago the situation was looking pretty grim. Today, skipping off to Oxford for my annual review (the yearly MOT that all CF centres perform on their charges) had a whole lot less of a downer on it.
Last year, they didn’t even make me do the exercise tolerance test, which is a kind of modified bleep test involving shuttle walks of 10m at ever-increasing speeds to see how far you can get until either your lungs or your legs give up.
This year, I practically flew up and down the corridor, or so it felt. In the end, it was the tightness in my calves which really did for me, my lungs seemed happy enough at the exertion. Talk to my old physio (never to treat me again!) yesterday, when I caught up with her over a cuppa, she pointed out that my muscles are still very short of protein and so struggling to get back up to the speed I have managed previously, which is why my performance may still not quite have been as good as I was expecting.
It’s so unbelievably cool to see the team at the hospital when I’m not gasping for breath and feeling so crappy the last thing I want to do is hear the gossip. Now pretty much all I do with them is gossip, it’s great. I’ve developed such a friendship with everyone there over the years we’ve been together and I really do miss them all.
I know it sounds a bit odd – and I certainly don’t miss how ill I was, or how bad I felt – but over the years you develop a very close relationship with your care team; they understand you, they know you almost better than you know yourself and they very often know exactly what you’re thinking. For the last year of my care more than before, I was heading to the hospital often as much as twice or three times a week, so the bond with the team only got stronger as they worked their magic to keep me alive long enough to get my life-saving transplant.
I can never fully express the gratitude I have for everyone at the Churchill in Oxford. My life in the past has at times resembled a living hell, however much of a brave face I tried to put on it, but they have always been there for me. I’ve been able to talk to them when I’ve been too scared to raise things with anyone else, I’ve been able to laugh and joke and try to keep my spirits up. But more than anything, I’ve been safe in the knowledge that they were there – always ready and waiting with whatever I needed, whenever I needed them.
I don’t for one second miss my old CF lungs, but I do miss the interaction with the friends I made there. I just have to make more effort to stay in touch now I don’t need them every day of the week.
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