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.
Dear Mel, You sound nice so I thought I’d give you one of my recipes. This is how you make it. You take one amazing, special girl with CF and you introduce her to a stupid idiot boy who forgets about all the good times that he has had with the amazing girl. Throw in his complete obsession with her awesome cupcakes and mix up together. The end result should be that the girl and the boy live together in perfect harmony, only the boy’s got the recipe a bit wrong and has caused it to burn. Or curdle. Or whatever cake mix does – I mean, how would I know? I’m into sports, right? Anyway, hope you can use the recipe. Oh – and – SORRY. Hx
My eyes well up with tears. I look at the date – yesterday.
Then I pick up my mobile phone and wait for his lovely kind voice to answer.
***
Something happens to me that evening.
After I speak to Harry and he says he’s missed me and he’s sorry (again), I feel all fired up and strange and a little bit reckless.
Mum has come back home laden with shopping bags and we get out all the clothes she’s bought and try them on. She’s got me some new black leggings and a pretty summer tunic top in white with red roses on it.
‘It’s brilliant, Mum,’ I say, twirling in front of the mirror and
then stopping to cough. ‘Thanks. And I’m sorry I’ve been a nightmare daughter this week.’
‘Only this week?’ says Mum, but her eyes are glinting in a naughty sort of way. She’s bought cream cakes home too and we devour them at the kitchen table with a cup of proper coffee and for once we don’t talk about how my own recipes would be better or about CF or the competition or school, but just enjoy cramming the pastry into our mouths and licking the cream off our lips.
‘It’s good having a daughter who doesn’t tell me off about extra calories,’ says Mum, reaching for another cake and undoing her brown leather belt. ‘I might even order a Chinese later too. What do you think?’
‘Great,’ I say, but I’m not really listening.
I don’t know whether it’s the cake, or the kindness of all the strangers with their recipes, or the fact I’ve been resting at home for days, or that Harry was so sweet on the phone and I’m relieved that we’re going out again, or maybe even that deep down I realise I might be on course to a lung transplant and am going to be out of action for ages – but my brain is doing all these strange, devious little things that I can’t voice to Mum. The more I try and ignore them, the bigger and more powerful they seem to get, until I feel like I’m going to burst if I don’t go upstairs to my bedroom and give them some serious thought.
‘I’m tired,’ I lie as we clear up. ‘Might go to bed for a bit. I’ll get up for supper, don’t worry.’
‘Oh,’ says Mum. Her jolly voice has faded back to the concerned one again. ‘Are you sure you’re OK? You never go to bed in the day.’
‘Yeah,’ I say. ‘I’m just going to lie on the bed and watch TV in my room, that’s all.’
‘Ah, right,’ says Mum. Her smile returns. ‘One of your dreadful teen soaps, no doubt.’
‘Of course,’ I say. ‘Or a cookery programme. That’s new, right?’
Mum laughs and takes her bags upstairs. I follow her and go into my room.
I shut the door and wait until she’s gone downstairs again and I hear her chatting on the phone to my grandmother.
Then I lift the lid of the laptop and start to hatch my plan.
Chapter Ten
For the next five days I go about my usual business, but I’ve got this bubbling excitement inside me and it’s all I can do not to blurt it out to anybody.
It’s like the secret I’m carrying around has given me a new burst of energy. I stay at school full-time all week and I take part in another football match and only need my inhaler once after the game and not before like I usually do. I go to the cinema with Harry after school on the Monday and I sit all snuggled up under his arm in the back row and I feel like I might die from happiness and excitement rather than from CF, which is a new way of looking at things.
I update my blog when I get home from seeing Harry, before I do my tedious physio session on the bed.
I chew my pen and think carefully about the words I am going to use. I mean – what if Mum saw my blog? Not that she ever would. But just in case. So I just write this:
Hi, it’s Amelie here. I haven’t really got an update about the competition because like I said before, Mum has made it clear that I can’t go to London because it would be bad for my health.
And because I know she’s right, I probably ought to listen to her… probably…
I leave it at that. When I log on again an hour later, there’s a reply from a girl called Jen. It says:
Whoo-hoo, girl! I’m sensing a cake rebellion. Keep us posted, won’t you? Jen. P.S. My chocolate fondant sunk like a stone so I won’t put a picture of it here.
Somewhere deep inside me a little voice is telling me that I’m storing up harm for myself by throwing myself around as if there was nothing wrong with me, but I choose to ignore it.
Mum is pleased to see me being so much more energetic, but when she thinks I’m not looking, I catch her giving me puzzled glances and then almost speaking but thinking better of it.
At the end of the week she’s obviously decided she can’t keep it to herself any longer.
We’re sitting in front of the television devouring a plate of my strawberry and banana muffins and watching a comedy that we both like. When the adverts come on, Mum leans forward and clicks the mute button on the remote.
‘Amelie,’ she says, turning to me with a frown. She’s wearing a fluffy pink dressing gown and slippers and her hair is up in a towel. Mum always has Bath Night on a Friday when she gets home from work. I’m still wearing my school uniform, but I’ve removed the horrid tie and black patent shoes and let my blouse hang out over my skirt.
‘What?’ I say. I haven’t really been concentrating on the telly. My head is a blur of ideas, plans and a fair number of devious lies that I am going to have to tell pretty soon.
‘Well,’ says Mum. ‘I just wondered if there’s anything going on that you’re not telling me about? Because since the annual review you’ve been kind of jumpy and restless and although you’re eating and sleeping and looking better, I’m wondering if some of it’s a bit of an act?’
Our programme comes back on and I make a move towards the remote, but Mum grabs it from me and puts it under her bottom.
‘Health is more important,’ she says. ‘So? I’m waiting.’
A whole load of conflicting thoughts are crashing about in my head. Part of me badly wants to tell Mum. Even though she drives me mad at times, she’s still the person who is most on my side in the whole world, more even than Harry. He doesn’t see me at my worse, when I’m being sick and hooked up to machines and yelling at Mum out of misery and frustration. Mum has seen it all for years and years and she is still here caring for me.
But if I tell her she will morph into The CF Police again and my plan will be trampled into the mud.
I play for time by reaching out for another muffin and dissecting it into soft lumps on my plate. I’ve used giant, moist strawberries and bananas just at the peak of their ripeness, along with a load of butter and sugar from Karim’s shop. I managed to do two hours after school last night and didn’t need to sit down and catch my breath for once.
‘Amelie,’ she says. ‘Will you just tell me what’s going on, for God’s sake? I wouldn’t mind going to bed this side of midnight.’
Uh-oh. Mum getting sarcastic is never a good sign. It’s usually followed by a flare-up of anger and the slamming of doors.
I stretch and give her my best smile.
‘Nothing is going on,’ I say. ‘I’m just happy. I’m back with Harry and I feel a bit better. I’m allowed to be happy, aren’t I?’
Mum’s face softens. She reaches out and touches my hair.
‘Of course, love,’ she says. ‘I just want you to know that you can always talk to me. About, you know, the way that CF makes you feel. OK?’
‘OK,’ I say, eating the last bit of muffin and slurping down my hot chocolate. Mum’s put a swirl of cream and some chocolate flakes on top just to get in as many calories as possible.
‘Night,’ says Mum, getting up. ‘Oh – you’ve had your Creon? And done your breathing?’
I give a deep, impatient sigh.
‘Yeah, yeah,’ I say. ‘I don’t want Tom to give me another lecture.’
Mum smiles and clicks off the kitchen light.
‘Oh – and Amelie,’ she says as she starts going upstairs. ‘Don’t forget that we’re going to hospital on Monday for you to have your gastrostomy fitted. I’ve told the school you’ll be off for a couple of days.’
‘Righty ho,’ I say. Then I wonder why I’ve said that. I sound about ninety. It’s hard to get Mum off my case sometimes.
I go upstairs to my room and shut the door.
Then I perch in the middle of the bed and log onto my laptop. I put in my passwords and check my online savings account.
‘Wow,’ I say. There’s five hundred pounds in there, from various birthday and Christmas presents. I hardly ever buy clothes or make-up, like most of the girls in my class, and I get my ingredients f
rom Karim so I don’t often need to buy too many of them either.
‘Good,’ I say to myself. ‘That should cover everything.’
I get under the duvet, but it’s hot and I’m too fired up to sleep so after a while I get up again and find a book but I can’t even concentrate on that.
In the end I just lie on top of the duvet staring up at the white ceiling and practising recipes in my head until I must have fallen asleep, because I wake up in the same position six hours later and it’s Saturday.
Mornings are not good when you’ve got CF. All the gunk in your chest seems to get harder and thicker overnight and you wake up with a heavy, clogged feeling that’s difficult to shift.
I stay on the bed and do my breathing cycle for forty minutes until I’ve pushed loads of mucus up out of my airways. When I first started doing the physio myself, forty minutes felt like a lifetime to be trapped on a bed without getting up, but now I hardly notice. Then I rest for five minutes, swing my legs over the side of the bed and get dressed in my leggings, a white tunic top and silver ballet shoes. I brush my long black hair and let it fall over my shoulders. I study my face in the mirror. I’m always pale because of my CF, but today there’s a tiny flush of colour in my cheeks.
I’m meeting Gemma in town and I’m going to let her in on my secret.
It’s a big one.
And I need her help.
***
‘You’re crazy,’ says Gemma.
We’re sitting in McDonalds and stuffing burgers and chips. I’ve got two burgers both with cheese on and a double portion of fries and a strawberry milkshake. Gemma’s got some weird chicken burger with salad in it and a small portion of fries.
I click the plastic lid off my milkshake and stir the thick gloop around with my red straw.
‘I’m not crazy,’ I say. ‘I’m just ambitious. I need to do this. It’s part of the rest of my life, what’s left of it.’
Gemma screws up her face and nibbles on the end of a chip.
‘Your mum is going to kill you anyway when she finds out,’ she says. ‘So I reckon you won’t need to worry about CF shortening your life any longer.’
The Baking Life of Amelie Day Page 7
