‘I don’t want you to get Salmonella,’ says Mum, but she starts spooning the egg onto some of my home-made granary bread. She puts two plates in front of us and pours me a cup of tea from our brown pot.
‘Stewed,’ I say in an automatic way, staring at the orangey scum floating on top of my cup.
Mum ignores me. She’s used to me making a fuss about the way everything is done in the kitchen.
She’s got the day off work today and is dressed in leggings and a floaty top instead of her usual smart business suit and heels. Even though she’s quite old, she manages somehow to look trendy. If some of the other mothers of kids at school wore leggings, they’d look tragic.
I can tell that she’s really worried. I can hear it in her over-bright voice and see it in the way she keeps staring up at the clock.
She’s come on every single one of my annual reviews and seen how things have started to slide downwards a little bit more every year. Dad comes to them whenever he can take time away from work, too. If he can’t make it, Mum rings him at the end of the day and they discuss my results over the phone.
I sigh as I force down the scrambled egg into my sore guts.
‘Creon,’ says Mum. She pushes my pill box across the table. I take a few of the capsules and gulp them down with the stewed tea.
‘Aspirin,’ she says next. I glance up, surprised.
‘I don’t take aspirin,’ I say. ‘Do I?’
I take so many tablets I’m not always sure what they all are.
Mum smiles.
‘The aspirin are for me,’ she says. ‘I always get a headache at the hospital. It’s the stress of waiting about in those stuffy rooms.’
She slips a yellow box into her handbag and stands up.
‘Right,’ she says. ‘Let’s go and get this over with and then we can come back home.’
***
We’re at the CF centre by 8.30. I’ve got several different staff to see over the course of the day and numerous tests. They reckon I’ll be at the hospital until the early evening, so Mum has packed up a huge bag full of high-calorie drinks, snacks and tablets to keep me going. Plus she’s got my inhaler, my nebuliser and a box of plasters in case the skin around my portacath snags and bleeds.
The first thing I’m having done is a series of blood tests to make sure that I’m not getting liver disease or anything else that affects my organs. We sit in a grey waiting room with loads of bored-looking people and wait for nearly half an hour to get called in. I roll up my sleeve and let the nurse extract my dark blood into a series of little tubes. It comes out cherry-red and glossy, which gets me thinking about red cherry icing on cupcakes and I get so excited about this new icing I’ve not yet tried that I don’t even hear what the nurse is saying to me and have to be nudged by Mum. I press the gauze into the hole in my arm and she puts a plaster over the top.
That’s the easy bit done.
The next thing I have to have done is a CT scan. This is so that the doctors can see my lungs and whether my airways have been damaged by repeated chest infections. I only usually get this once at year at the annual review.
I have to lie inside a tunnel for the scan. When I first had this done I got really panicky at being in the dark, enclosed space, but I’ve had so many of them now that I don’t even register it. When it’s done the radiographer lets me take a look on a computer screen. Not everybody gets to see their x-rays straight away, but I know all the staff in this place so I’m allowed to.
‘Hmm,’ I say, staring at my ribs on the picture. My portacath is visible too, a tiny circle at the top of my chest. ‘I look like a rack of lamb.’
Mum laughs.
‘She translates everything into food terms,’ she says to the radiographer. ‘It’s her way of coping.’
I give Mum an angry look.
‘No it’s not,’ I hiss. ‘I just think I look like meat ribs, that’s all.’
In fact I’m trying not to look at the strange inflated shape of my chest on the x-ray. I know full well that this is not good. As if she’s sensing my despair, the radiographer switches off her machine and my ribs disappear from view.
A man in a green overall comes in and puts me in a wheelchair to take me up to the physio department.
‘I can walk, you know!’ I protest, but deep down I’m relieved to be pushed. The CF centre has loads of long, shiny grey corridors and the x-ray department is miles from all the other offices. I’m out of breath already today. I’m not sure whether it’s because I’m nervous, or because I didn’t sleep, but my energy levels feel as if they might be hitting an all-time low.
Great.
Tom comes to greet me in the physio department with his usual wide, white smile.
‘Hi Mel,’ he says. ‘How’s it going?’
I don’t think he really expects an answer to this because he’s turned his back to me and is leading us through to his office, but I give a weak smile and allow the hospital orderly to help me out of my chair.
Tom makes me lie on the couch and show him how I’m doing my autogenic drainage. I demonstrate my brilliant breathing techniques and Mum tries not to wince at the ghastly sound of my rattling mucus clearing from my airways.
‘OK,’ he says afterwards. ‘Are you still on twice a day?’
I nod. Mum gives me a harsh look until I’m forced to look down at my feet.
‘I might forget sometimes,’ I mumble. ‘Lots of homework, you know.’
Tom smiles, but underneath the smile is a look of concern.
‘I think you need to really make sure you do it, Mel,’ he says. ‘And I haven’t seen your x-ray results yet, but by the sounds of it we need to increase the number of times you do the breathing to at least three times a day.’
I groan and bury my head on the desk for a moment.
When I come up I go dizzy for a moment and clutch at the sides of my chair.
I can see Mum trying not to have a panic.
‘I’m fine,’ I say. I sit up straight and force a smile back on. ‘OK. I’ll do it three times a day. Promise.’
Mum and Tom exchange a few more ideas and concerns while I sit there all bored, staring at the leaflet stand in his office and trying to make cake words out of ‘Cystic Fibrosis’. I’m still struggling with that when Mum drags me off for my next two appointments.
I’m kind of dreading these ones.
The first is with the nutritionist, Diane.
She’s the cleanest woman in the world. Her white coat is spotless and her shiny brown hair is tied back into a neat knot. Her glasses sparkle and her shoes are highly polished. Her office is very bare and tidy, with two identical pot plants placed one at each end of the windowsill. I reckon if Diane passed through our kitchen at home after I’d made a cheesecake, she might well have a heart attack from the shock of the mess.
‘OK,’ she says, sitting behind her desk and gesturing at me and Mum to sit down. ‘I can see that you’ve lost just a little bit of weight, Amelie, since you last came in.’
I last came in for weighing about four months ago so this is not such good news.
Diane weighs me on her digital scales and then measures my height. She calculates my Body Mass Index, dividing my weight by my height.
‘You’re quite a lot less than you should be,’ she says. ‘Have you been getting your maximum calories in every day?’
I nod. This at least is true. Mum can’t pick me up on this one. I’ve been stuffing my face with cake, chocolate and crisps on top of normal meals for what feels like forever.
‘Hmm,’ says Diane. ‘I’m going to suggest something to help with your weight, but I don’t want you to panic, OK?’
Why is it that as soon as somebody medical says the words ‘don’t panic,’ you immediately want to scream and panic and thrash about?
I feel cold and thin. The weight of whatever she’s about to suggest is already hovering over my head, about to plunge down and change my life yet again. I glance at Mum. She’s gripping her hands tog
ether so hard that they have turned white and she’s fiddling with the finger where her wedding ring used to be, except of course it’s not there any longer.
‘It’s alright,’ says Diane. ‘Loads of people with CF have this. I’m going to suggest that you’re set up with a feeding tube at home to pump calories into you overnight while you sleep. It really won’t affect you when you’re awake at all.’
I blow out my lips in despair, forgetting that I can’t breathe that well as it is. The short dip in oxygen leaves me coughing my guts up for nearly five minutes. Diane gets a grey cardboard bowl and holds it under my mouth while Mum hovers about chewing her lip and looking agonised.
When I’ve finished I sit up again, exhausted.
‘Sorry,’ I say. ‘You were talking about the tube. How would it go into my body?’
‘Through your stomach via a gastrostomy,’ says Diane. ‘You’d have to have that put in under general anaesthetic. Then it would just stay in your stomach, closed off by a button during the day. It would be easy for you or Mum to connect the tube at night-time. We can get about 2000 more calories into you while you’re sleeping.’
I nod. It’s amazing the things I’ve had to get used to over the years. Guess one more tube isn’t going to make so much difference. I still feel scared about it though. Not so much about the tube, but what it means about the general direction my health is heading in.
Diane gets me to fill in some forms saying that I’d like to be admitted to day surgery to have the gastrostomy fitted and then Mum helps me walk to the next appointment because I’m feeling tired and wobbly.
‘Poor old you,’ she says, squeezing my arm as we walk along. ‘Bet you can’t wait to get home. I think we’ll get a DVD out tonight and maybe have fish and chips. OK?’
I know she’s trying to be kind and cheer me up and all that, but it’s not really working. All I can think about is the competition in two weeks’ time and the fact that I’ve hardly done any preparation for it and all I can see up ahead of me is a huge black mountain blocking my way to London. Of course being me, the mountain is made out of thousands of black olives all gleaming and glistening with oil and dotted with chilli and garlic, but even this dramatic image fails to cheer me up much.
We’ve reached the office next door to Mr Rogers, my consultant, now. Trish is already there. She’s going to do my lung function test and then Mum and I are going to have a late lunch and then wait a couple of hours while Mr Rogers gets all my results together and gives me his opinion on them.
The lung function test is the thing I dread most of all. It’s really simple. All I have to do is blow hard into a machine and it measures the volume of air blown out of my lungs. Trish then compares this number to the number she recorded when I last did the test and then she can tell if my lung function has got better or worse.
I breathe as hard as I can into her machine and as usual it leaves me coughing and breathless again, so we go through the whole process of Trish holding a bowl under my mouth and Mum pacing up and down. Then Trish gestures for me to sit down.
I can see by her sympathetic face that it’s not great news.
‘Yes, you’ve guessed it,’ she says. ‘Your lung function is down a fair bit since last year’s review. It’s only at forty-eight per cent as opposed to last time when you were at nearly sixty. We’ll get the x-ray results and then Mr Rogers will be able to talk to you about what we might be able to do next. OK?’
Trish is really nice so I give her a big smile, even though my heart is aching at the news and I can’t even look at Mum.
‘You should get some better sweets for CF patients,’ I say, pointing to the tired pile of fruit lollies that she keeps to give the little kids. ‘There aren’t enough calories in those. You should be handing out fudge made with condensed milk. I’ll knock some up for you next time.’
Trish laughs.
‘Fair point,’ she says. ‘See you later.’
Then we stagger off downstairs to find the canteen.
The canteen in the CF centre does hot meals and sandwiches and sells loads of high calorie junk food as well so Mum piles up my tray with Shepherd’s Pie, roast potatoes and green beans and adds a strawberry milk-shake and a piece of sponge cake.
She chooses a ham salad for herself.
‘I think I’d rather have yours,’ I say, eyeing up the small meal with envy. My guts feel like they’re twisted in knots and I’ve got a faint sick feeling, not helped by the strong smell of hospital disinfectant all over the place.
‘Tough,’ says Mum. ‘You heard what Diane said. You’re losing way too much weight. So you need to eat this.’
Mum is going into ‘CF Police’ mode again, but I’m too tired to argue. I pick up the fork and examine the mixture of meat and mashed potato I’m about to put into my mouth.
‘Packet gravy,’ I say, all doleful. When I make Shepherd’s Pie I do amazing gravy with fresh sage, home-made lamb stock and a dash of Mum’s favourite red wine when she’s not looking. ‘And cheap white potatoes, not Maris Piper. Yuk.’
Mum sighs.
‘Oh Amelie,’ she says. ‘You are funny. Only you could be complaining about the gravy when you’ve just been given all that difficult news to digest. Most kids don’t care what potatoes they’re eating so long as they’re made into chips.’
I prod at my over-salted meal and consider this.
‘Mother,’ I say. ‘You of all people should know by now that I am not Most Kids.’
Mum gives me a look that I find hard to read for a moment and then I realise that she can’t speak because if she did, she’d start to cry.
I give her a weak smile and we eat the rest of our lunch in silence.
***
After another two hours of hanging about drinking endless cups of tea and coffee and high-calorie milkshakes, Mr Rogers finally comes out of his office and calls us in.
‘Sorry you’ve had such a long wait,’ he says. ‘I’ve had to wait for the various results to come in from other departments. We want to make sure that we’ve got all the information before we talk to you.’
He ushers us into his office. Because he’s a senior consultant he’s got posh furniture and much larger pot plants than everybody else. I sink down into the soft, expensive leather armchair and Mum takes the one next to me.
‘OK, hit me with it,’ I say, before Mr Rogers can start trying to dress up whatever he’s about to say with lots of medical speak. ‘I’ve got some cake tins waiting for action at home.’
Mr Rogers twinkles at me with his kind eyes over the top of his glasses and then returns his attention to the files on his desk.
‘The usual evidence of mild liver disease,’ he says. ‘Nothing to worry about at this stage. And all the other blood tests came back fine. But your lung function tests are down on last time and your loss of weight is quite marked. I gather Diane has spoken to you about gastrostomy. Any questions you might have about that?’
I shake my head. I’ve got a leaflet about it in my bag and I kind of understand the idea behind it.
‘What about my lungs?’ I say. ‘Do I need to do even more extra physio? Tom said three times a day would be enough.’
Mr Rogers exchanges a quick look with Mum. Then he clicks on a machine next to his desk and holds up my chest x-ray so that I can see it lit up again.
He points to an area of criss-cross lines in front of my ribs.
‘See these?’ he says. ‘Because you’ve had chronic infection in your airways, they’re now full of infected mucus and there’s air trapped in your lungs, which is why your chest looks expanded. The long word for this is “bronchiectasis”. The worse it gets, the more trouble your lungs will have clearing carbon dioxide from your bloodstream.’
‘Wow,’ I say. ‘Another long word for my collection. Cheers, Doc.’
Mum flinches at my casual way of addressing Mr Rogers.
‘How do we stop it getting worse?’ she says. ‘Is it a question of more physio?’
Mr Rogers takes off his glasses and rubs at his brow for a moment. He looks tired. I wonder how many patients with CF he sees a day and whether they’re all wise-cracking and sarcastic like me, or whether he has kids weeping and sobbing all over his desk. I note that he’s got a box of white tissues with the top one sticking out in my direction like he’s predicted I’m going to need it.
Tissues always remind me of the soft layer you find stuck underneath an almond macaroon. I love macaroons, the way when you bite into them they’re chewy instead of crisp. I love the way that the sugar slightly grates the roof of your mouth while it dissolves and then there’s the strange delight of eating edible paper from the bottom of the biscuit.
‘No, not really,’ he says. ‘Of course you must carry on with the physio – that’s very important. But the further deterioration of your lungs is hard for us to prevent. You may find it hard to walk anywhere much soon without oxygen and I guess that’s going to have quite an impact on your quality of life, as well as on your schoolwork.’
I picture the school football team and a lump comes into my throat. Then I picture myself travelling up to London on the train for the competition, only the girl I’m picturing in the train carriage is bursting with vibrant health and doesn’t have CF at all. She’s a little on the plump side, but toned and athletic too. Her hair is thick and glossy with health rather than dry from lack of nutrients. She’s a bit taller than I am – well, a lot taller. She’s nearly as tall as a supermodel. Her skin is back to a normal light olive colour rather than pasty white and when she takes a deep breath she smiles and relaxes rather than burst into fits of rattling cough. The only thing she has to worry about is baking her best and looking good on TV.
Oh bother. Now I’m getting tears coming up into my eyes. I can’t even look at Mum. I know exactly what her face will look like. She’ll be biting her lip to try and stay in control and sensible and adult. Her eyes will be kind of imploring Mr Rogers to say something helpful and positive and not-too-scary.
The Baking Life of Amelie Day Page 6