The Baking Life of Amelie Day (9 page)

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.

We both know what he’s going to say next. He said it last year at my annual review too, only then he said that we probably had another year or two before we needed to seriously consider it.

‘I think we should speak again about putting you on the transplant list,’ he says.

And with that the entire bottom falls out of my world, except that the way I see it in my head is somebody getting a huge sack of flour and then stabbing it at the bottom with a big knife so that all the flour trickles out and blows away.

‘Mel, what do you think?’ says Mum, reaching out to hold my hand.

They wait for me to answer.

I just can’t speak.

***

On the way home I eat a Mars Bar in the passenger seat while Mum negotiates the rush-hour traffic. The CF centre is only ten miles from where we live, as Mum had all this in mind when she chose the house we live in now, but with the traffic it takes an hour to get back.

Neither of us says much in the car.

There’s not really that much to say.

After Mr Rogers mentioned the transplant we spent another session in his office talking it all through and we decided that I would have to put my name on the list.

I don’t have much choice really.

If I want to live for a good while longer, I’ve got to have it done. Time is running out.

Mum indicates and pulls in through the old stable arch and into our parking space at the back.

We sit in the car in silence for a moment, trying to find the right words.

In the end I try to make light of it because Mum looks so stricken.

‘S’pose London’s off, then?’ I say. My voice sounds like a baby lamb, all thin and bleating. The thought of lamb makes a thin rush of hunger rise up in my chest, despite everything. Perhaps I’ll see if there’s any lamb mince in the freezer and make burgers instead of fish and chips. Burgers with blue cheese melted on top and thick, chunky fries and home-made tomato sauce. Yum.

Mum turns to face me. She takes both my hands in her thin, cold ones.

‘Yes, Amelie,’ she says. ‘I’m really sorry, but you’re just not up to it at the moment. London is most definitely off. End of story.’

She gets out of the car.

I follow her inside in silence.

Chapter Nine

After the annual review I spend a week feeling miserable.

My health continues to get worse. I struggle for breath and it’s an effort to get to school. The school nurse keeps an eye on me, but she hasn’t got time to single out one pupil for special attention, so mostly I monitor my own health and take pills and puffs of inhaler whenever I think I need them. I get the bus home and walk slowly up the road from the bus stop feeling like an OAP, all tired and out of breath. Sometimes Gemma walks with me. I’ve told her about the annual review and I could see the sympathy in her eyes mixed with relief that it wasn’t all happening to her. I suppose most people that know me feel like that so I can’t really blame her.

I’ve started to have some thoughts about Gemma and I don’t like the way in which they are going. I’ve admitted to myself that I’m the tiniest bit jealous of her being so well all the time. She never even seems to catch a cold. And she’s my best friend, so when I get these feelings I feel all swamped with guilt and self-loathing.

A date comes through for the day surgery to fit my gastrostomy so that I can have night feeds through a tube. It’s for next week – one day before I was due to go to London.

Don’t suppose it really matters now. I’ve got to have the tube, and that’s that.

And as for the lung transplant, I just have to wait.

I could be waiting for years. A lot of people are on the waiting list and I need both lungs replacing rather than just one. I try not to think about what getting a new pair of lungs means but it’s hard not to.

It means that somebody else will have to die so that I can breathe again.

That’s one heck of a thought to carry around. I start to worry that if I have a different pair of lungs, I won’t be me any longer. What if I take on the personality of the girl or boy who has died? What if they hated baking? What if I lose my Flour Power?

The thought is too terrifying to spend much time on.

And there’s another thing which is making me sad.

I haven’t heard from Harry.

***

I hang around the house all weekend annoying Mum by making mess in the kitchen and coming out with dramatic statements about lung transplants, until in the end she goes out shopping with a friend and leaves me alone for a couple of hours with strict instructions to ring her mobile if I feel worse. The door shuts behind her and it feels good for a moment to finally have her out of my hair but then the silence starts cutting in and I wander about the house coughing and looking out of windows and wondering if I’ll ever hear from Harry again.

There’s nothing on TV so I reach for my laptop and go on Facebook for a bit and then I don’t know what makes me do this, because I know full well that the whole London thing is off and that Mum is expecting me to write to the competition organisers and tell them, but I go onto my blog and I see with a little thrill that there are twenty-six new replies to my post calling for recipe ideas. I click onto the first one. It’s from somebody called Jules. This is what it says:

Just saw your blog entry and wanted to wish you loads of luck if you do get to the London competition. I’m one of the other people who applied but I didn’t get through, so I wondered if you would like one of my recipes? You said you were looking for a biscuit recipe, right? Well, I’m letting you have my brilliant recipe for chewy macaroons. It’s handed down from my grandmother. She’s kind of mad, but I know she would be pleased if you cooked her recipe in the competition. Hope you win! Jules.

Macaroons! They only happen to be my most favourite biscuit in the entire world!

I scroll down the page and look at the recipe, my eyes glinting and my heart pounding. I print it off and then read the rest of the replies on my blog. Most of them are from teenage girls, but one or two are from boys. That’s really cool, that boys have taken the trouble to get recipes from their families for me. There are masses of recipes for sticky, gooey cakes, including gingerbread and double chocolate brownies – yum. And somebody has even taken up my challenge to make a chocolate fondant and has posted a fuzzy photograph of chocolate sauce oozing out of soft sponge. Lots of people have expressed their disappointment that I might not be able to go to the competition. Yeah. Tell me about it. So I post a reply to every person who’s given me a recipe and I print the recipes all out and am about to go downstairs and lie on the sofa with them and a big red pen and then a new blog response right at the top of the page catches my eye.