down. Or you can scoff them straight from the oven, like I do. And be warned â once youâve eaten one, you will have to eat another! Thatâs because they are so moreish. IF you manage to resist, you can store them in an airtight tin or jar for a couple of days.
Chapter Six
âOw,â I say. I rub at the sore area on my chest where you can just see the outline of my portacath beneath the skin. The portacath was put in over a year ago. It lives under my skin on my chest and it makes it easier for the nurses to get treatments into a tube and pumped fast into my body.
Iâm at the special CF centre. Itâs a bit like a hospital, but itâs only for people with CF. Thereâs a whole team of people here to help people like me. As I got diagnosed when I was a tiny baby, Iâve been coming here forever and know everybody in the building. Thereâs Mr Rogers, the consultant whoâs in charge of my health. Then thereâs Trisha, the nurse. She does things like pump antibiotics into my portacath when Iâve got a chest infection and she takes special swab samples from me every few weeks to check that Iâm not getting a new infection. People with CF get loads of colds and coughs, same as everybody else, but if I get one it can turn into something nastier and make my lungs even more rubbish than they already are. So if I even get the slightest trace of a sniffle, Mum whips me into the CF centre and gets Trisha to take a sample. If the results come back that Iâve got an infection, Iâm pumped full of extra strong antibiotics, sometimes for many months. Trish also comes to our house if Iâm feeling really ill. Mum and Trish are more like friends now, sheâs been part of our lives for so long.
I also see quite a lot of Diane. Sheâs the dietician who advises me what to eat and when. Thereâs Fiona, the social worker who helps Mum with school issues and tells her how to claim the special allowance sheâs entitled to for looking after me. And then thereâs Tom, the physiotherapist. He taught Mum how to treat me at home with her hands to help loosen all the stubborn mucus in my chest. Two years ago he taught me how to do something called autogenic drainage which I can do on my own at home so that Mum doesnât need to get so involved with my physio any more. For this I have to lie on my back on my bed and do three special sorts of breathing: unsticking, collecting and evacuating the mucus out of my battered lungs. The noises I make while I am doing it are not pretty. Iâm supposed to do it twice a day but I always fall out with Mum because I tend to, erm, forget. Or life gets in the way. Or I donât really want Gemma coming round in the middle of it, even though sheâs really good about the whole CF thing.
Or worst of all, I might have a batch of muffins to take out of the oven.
Flour Power!
***
So Iâm at hospital having my portacath flushed through. I have to have this done every month to make sure that it doesnât get clogged or else my antibiotics canât get into my system. It feels a bit uncomfortable but the main issue is that I just get so bored waiting for it all to be finished.
Iâm in a room of my own. People with CF have to be very careful not to infect one another. That sucks. Itâs bad enough being in hospital so often without being able to speak to people your own age who might just understand what youâre going through.
Iâve got a pile of food magazines on my lap and Iâm leafing through the latest recipes by Jamie, Nigella and Gordon, whilst trying not to notice whatâs going on in my chest.
âSheâs been more poorly this month than sheâs been for years,â Mum is saying to the consultant whoâs just come into the room. Iâve known Mr Rogers for years, ever since I was about six. I still donât really understand why the consultants here are called