Living with CF: the one they let in

ME AND CF- THE BROWN DRESS YEARS

‘Don’t worry if they don’t accept you- they’re a hard group to get to know and they won’t let just anyone in’. That was the warning from one of the other nurses when I started work as an auxiliary on the CF Unit in 2001.  Well, I was lucky, because that year I met some amazing people and learnt more about life, love and friendship than I thought possible.

At only 18 I was naïve and probably fairly annoying, but you guys put up with me and seemed to find me amusing!  It was strange at first, nursing people who were my own age, but I loved the atmosphere on the ward and spent more time than I probably should’ve gossiping and looking at shopping catalogues… When I left to go to Medical School I was determined not to lose touch, so swapped numbers and began a new phase of barbecues, birthday parties, transplant anniversary parties, and dodgy clubbing!  I’m also privileged to be ‘pet doctor’, on hand to field text enquiries like “my side hurts, what should I do?” and “help, I’ve lost my sense of smell”!  Glad to be of service…

One side-effect of the parties was meeting Marc.  We discovered we liked the same music, I got drunk and forced him to give me his number- and so began another new phase.  In dating him I’ve been exposed to a whole world of new issues about CF- I try not to nag about medicines but have got used to having a handbag full of creon and I’ve become quite good at a little bit of physio (a great excuse to hit him if he’s winding me up!).  Although he keeps pretty well it is sometimes scary- crossing my fingers to hear if his lung functions are up or down after clinic, or worrying about him in hospital.  Somehow when I’m with him it’s all worth it!

It’s been impossibly hard over the years, when we’ve lost friends.  Half the problem now as I finish my training is that I know too much, and see the transplant issue from the ‘other side’ every day.  I have to bite my tongue to stop myself from telling off smokers on my wards - if they don’t want their lungs I can think of lots of people who’d be grateful for them.  The only thing I can do is shout about organ donation at every opportunity- which I do.  Apparently I’m quite boring on the subject.

Doctors and nurses are always told not to ‘get too close’ to patients- but even though it’s sometimes painful I’m so glad I ignored that advice.  Thank you for giving me so much friendship, fun, encouragement and inspiration over the years. You’re not scary at all..!