I allow myself a small, victorious smile at that.
Mum locks eyes with my dad and they have a kind of stare-off, like the black cat and the Siamese who are always passing through our garden in a flurry of teeth, eyes, yowls and spits.
In the end Dad gets up and puts his cup and plate back on the tray.
‘I don’t think we’re going to agree, are we?’ he says. ‘You’re more concerned with her physical health and I’m concerned with the mental. How do we meet in the middle?’
Mum shakes her head.
‘We don’t,’ she says in a tired voice. ‘I’m the one who lives with her. So I will make the decision. OK?’
Dad nods, but his face looks sad. It mirrors my own. I can see my fabulous baking opportunity slipping even further into the great mixing bowl of life, to be lost in a mess of eggs, flour and butter.
He gets up and walks back over to the cobbles and out of the garden gate towards his car.
‘See you, kiddo,’ he says, blowing me a kiss.
He blows one to Mum, as well but she pretends not to see.
Wow. Parents can be so stressful. I feel worn out from witnessing their conversation and I have to have another fortifying carrot cake and cup of tea.
‘I guess that’s it then,’ I say to Mum as we tidy up in the kitchen. ‘I should forget about going to London.’
My voice must sound sad because Mum comes over and gives me a hug.
‘I don’t think you can go, love,’ she says. ‘But if you like, we’ll get your annual review over with and make a final decision. OK?’
That’s definitely progress. I give her a hug back and offer to cook supper which for me is like the biggest treat out there.
‘Can I invite Harry over for dinner?’ I say.
Mum smiles.
‘OK,’ she says.
I watch her back disappearing upstairs and I realise that she’s still got no intention of letting me go to London. The annual review is hardly ever good news. My lung function is always less good than the year before. I can feel it. I get more out of breath than I used to and my coughing has taken on a new and deadly rattle. I’m dreading the bit where the doctors work out my BMI too. That stands for ‘Body Mass Index’ and it works out whether I’m the right weight for my height. I’ve never once been the right amount and the nutritionist always tells me that I need to pack in more calories.
I sink down onto the stairs and bury my face in my arms.
I’ve got to get to London.
I’ve just got to.
The rest of my life depends on it.
Golden Syrup Cookies
To make between 20-24 of these delicious crunchy cookies, you will need:
455g (16oz) self-raising flour
230g (8oz) butter
230g (8oz) sugar (half white caster, half brown – for the brown sugar, I use Muscovado or Demerara, but any brown sugar will do)
120ml (4oz) golden syrup
Anything you would like to add to the biscuit mix – peanuts, chocolate chips, even Smarties!
Heat the oven to 180°C/360°F/gas mark 4.
First of all you need to melt the butter in a pan (don’t boil, just simmer on a low heat). Then add in the golden syrup until it’s all melted into a nice gloopy liquid.
In a mixing bowl, sieve your flour, add the sugar and mix this together, then pour in the butter and syrup mix. Give it all a good stir until you’ve got a fairly stiff biscuit dough.
At this point you can add in anything you want to go inside your cookies. My favourite is peanuts, even salted ones – for some reason the salt and the cookies go very well together.
Shape the mixture into balls just bigger than a golf ball and place them on a couple of greased baking trays. You will need to leave quite a lot of space around each biscuit because when they cook they blow up much bigger and could end up joined to the next biscuit! Probably best to limit the numbers to 10 biscuits per baking tray. If you’ve got any dough left over, refrigerate it and roll it out to make more cookies in a day or two.
Bake them in the oven for about 15 minutes or until they are golden and firm to the touch. Let them cool on the wire rack and then store in an airtight tin.
If you want, at the stage where you mix the flour with the sugar, you could swap 50g (1 ½ oz) of the flour for 50g of chocolate powder for a more chocolaty biscuit – yum – or even 50g of desiccated coconut for a different flavour. These biscuits are a pretty good way of experimenting with loads of different flavours and toppings.
Chapter Seven
I miss five days at school.
Trish’s latest sample shows that I have another chest infection brewing and I need to take more antibiotics in addition to the ones I take every day by inhaling from my nebuliser. Mum’s been shown how to feed the new stronger drugs into a tube that feeds in through my portacath, so she does this every day and I lie on the sofa and complain about not being able to make cakes. I read recipe books instead, one after another, and start scribbling down pages of ideas.
I glance at the list of rules from the competition organisers. For the two baked desserts, I have to make some mini-puddings and then a larger one. I’m agonising between dark chocolate fondant mini-cakes with Chantilly crème or rich moist mini-Bakewell tarts with home-made almond ice cream. For the larger cake I’m pretty sure I’m going to do my famous sticky German gingerbread with vanilla custard.
So I wait until the fourth day when I’ve started to feel a bit better and I go back into the kitchen and start messing around with flour and sugar and peanuts and eggs. Mum comes in from work and does a big blissed-out sniff of the air and tries not to look at the smeared work surfaces, the flour all over the floor and the knives covered in butter and flung into bowls.
‘I hope you’re not overdoing it,’ Mum says.
I pull a face. We’re only just speaking, Mum and I. We have a pretty intense relationship at the best of times. She’s the only one who sees me when I’m really sick and she’s the one who has to deal with it. Sometimes I don’t even want to look at her worried, tired face any more because all it does is remind me how sick I get.
The day before yesterday she tried to put her arm around me while she held a bowl in front of my face for me to cough stuff into and I pushed her away. Hard. The bowl fell to the floor and Mum jumped as if she’d been shot, but then she saw my face and chest contorting with the effort of getting all the mucus up and her face softened. She sat next to me on the edge of the bed, taking care not to touch me that time, and she held the bowl until I’d finished and carried it out and cleaned it in the bathroom. Then she got me a glass of water and for supper she made me a bowl of thick mushroom soup with a swirl of cream on the top.
‘You need to eat it,’ she said. ‘You’re getting too thin again.’
I still felt sick but I drank the soup and a faint colour crept back into my white face.
Mum is brilliant. And I know she is, which makes it feel really horrid when I’m mean to her and yell stuff at her.
Sometimes I tell her to get the hell out of my bedroom.
***
It’s two days until my annual review.
I’m back at school for a half-day because I’m tiring really easily at the moment and Mum wants me home straight after lunch. It’s kind of tough dipping in and out of school like this. I feel I miss out on a lot of stuff, even just the classroom gossip. The other kids are fine about it and some of them make a point of asking me how I am, but I still feel like I stick out like a sore lung.
It doesn’t help that I’m smaller and thinner than most of the rest of my class. Despite that, I’m a pretty key member of the football team. Because I’m small and wiry I can dodge the other players and hold onto the ball.
I play a match in the morning after using my inhaler and then I sit through double maths and by the time the bell goes for lunch I feel pretty wiped. I don’t tell anybody. There are teachers who look out for me and if I told them I was feeling bad they’d send me
to the school nurse and she’d ring Mum straight away.
‘You OK?’ Harry says. We’re walking towards the back of the school to eat our lunch underneath the big oak tree near the playing fields and the short walk feels like miles to me. Harry’s not in my class but in the year above. We only eat lunch together twice a week for half an hour because he does tennis club and judo club during lunch break on Tuesdays and Thursdays and I do art club on Friday lunchtimes, so it’s kind of special being able to sit underneath the tree with him.
‘Yeah. Ish,’ I say, sitting down on the damp grass and leaning back against the trunk with a sigh. I’m more honest with Harry than I am with anybody else on the planet, even Gemma. There’s something about Harry which means I’m more patient with him than anyone else in my life, too. I think it’s because he’s quite casual and normal about the whole CF thing. That doesn’t mean he’s uncaring. He does keep a keen eye on me. Just that he is the opposite of ‘The CF Police.’ He lets me express opinions and do things I want to do without warning me all the time that whatever it is will make my CF worse.
I lean back against the tree. Then a fit of coughing takes hold of me and I lean forwards and cough and retch and make revolting rattling noises from my chest until I’m aching with tiredness.
‘Sorry,’ I whisper. ‘I hate this cough sometimes.’
Harry nods. Then he snaps open his lunchbox and reveals loads of healthy stuff like apples and bits of green salad. He knows full well that he’s going to get half my cake and chocolate supply, so this is not as worthy as it might seem.
‘Swap?’ he says, holding out a tub of cucumber and tomato and eyeing up the lemon muffins that I made last night. They’re drizzled with icing made with fresh lemons and there’s a sharp lemon syrup running through the sponge of each little cake so that biting into them is all zingy and surprising and makes the insides of your cheeks go a bit funny.
‘Ha, ha,’ I say. I take one piece of cucumber and pass the rest of the salad back to him. I can’t eat tomatoes because my stomach already makes too much acid and they just make it worse. Then I give him one of the muffins and keep two back for myself. I’m not being greedy – I just need to cram in the calories or else I’ll get even thinner.
‘So,’ says Harry, not looking me in the eye but frowning over at the science lab as if he’s waiting for something to explode out of the roof. ‘Are you feeling really rough today?’
I sigh and put the cake box down on my lap. I finish chewing and make a mental note to add slightly less sugar to the lemon syrup next time, then I rest my head on his warm shoulder.
‘Oh, I dunno,’ I say, sniffing the starchy smell of his white school shirt. Harry’s mother is very keen on fragrant fabric conditioners with pictures of tulips on the bottle. ‘Kind of. Better than I did three days ago. But I’m dreading the annual review.’
Harry rests his cheek on the top of my head for a moment and then bites into his apple. He takes such huge bites that half the apple disappears into his mouth right away.
‘Have you had your thingy?’ he says. He’s looking at my schoolbag.
I pull a face.
‘You sound like Mum,’ I say. ‘Except she would refer to it by its correct name.’
Harry laughs.
‘OK then – have you had your Creon?’ he says, passing me the school bag. ‘Trust you to take something that sounds like a character from Star Trek.’
I get out my plastic box of pills and take a few of the enzymes that I have to take with every meal. I gulp down some water and then lean back and look up at the clouds drifting over the sky.
‘Harry,’ I say. My voice sounds clogged. I reach into the bag and pull out my inhaler, take a few deep breaths on it. Better. ‘Where do you think we go when we die?’
Harry gives me a startled look when I say that. He tries to cover it straight up by leaning forwards and fiddling with the laces on his trainers, but I saw his face lose the smiley look for a moment and a tiny, mean part of me feels pleased that I actually mean that much to him.
‘Dunno,’ he says. ‘Not sure we really go anywhere. Why? Do you want to go somewhere else?’
I shiver and pull the sleeves of my cardigan down. It’s cooling down out here and loads of kids are heading back inside because the bell’s going to go any minute. I’m one of the few kids who don’t rush anywhere at school and I’m often slightly late for lessons. It’s not because I’m trying to be a rebel or anything cool like that. It’s because if I rush, I get out of breath and enter the classroom doubled up coughing and let’s face it, I might as well have a red light flashing on and off on my head and a sign saying ‘SICK PERSON’ in big letters around my neck if my cough starts up in the classroom. Once I’m coughing, classes come to a halt. I don’t think that the teachers can hear themselves talk over the racket.
You might think that a person with CF would want to rush more, because they know that their life is likely to be a whole load shorter than everybody else’s, but I’m not really like that, even though sometimes I’m keen to pack as many experiences into my life as possible.
When I watch the rest of my class rush about I kind of sink back and take a deep breath and let them get on with it. It’s like I already know what life’s about and this urgent rush to get everywhere seems a bit stupid. I mean – I know that life is short and goes fast, even for people who live to be eighty. So sometimes I like to lean back and take stock of things and notice them properly. After all, I don’t have so much time left to notice things, do I?
‘I’ve just been thinking about it loads,’ I say. ‘Sorry. I didn’t mean to be all gruesome and morbid. Kind of stupid, huh?’
I turn to look at Harry with a grin on my face but for once he doesn’t return it.
Instead he kicks at the wall outside the door into the main school corridor. When he turns to me his face is red and ugly.
‘Mel,’ he says, ‘you’re thirteen. Yeah, I know you have a life-threatening illness. I know that and I accept it. But all this crap about life after death is doing my head in, alright? Maybe I don’t want to think about you not being around, yeah? Did you ever try to look at this from my point of view?’
He flings open the double doors to the school hall so hard that they bang against the walls and slam back, nearly injuring a couple of girls from my class.
‘Sorry,’ I say to the girls. They scowl at me and raise their eyes at one another. I wouldn’t blame them if they were thinking there goes the pathetic sick girl who can’t get anything right.
Tears threaten to spill out of my eyes so I fumble in my pocket for a Mars Bar and shove it savagely into my mouth.
I go into the girl’s cloakroom and sit on a bench. I cough until my eyes are watering yet again.
Then I lean against the wall with my eyes closed and wish I was somebody else.
Chapter Eight
Sometimes I dream up recipes in the night.
I keep a pen and pad by the bed just in case I get any brilliant ideas. The cakes I invent in my sleep are often loads more colourful and unusual than the ones I cook up when I’m awake.
Gemma’s always telling me that she dreams about boys off The X Factor or else she dreams that she’s not finished her homework and the teacher is yelling at her.
I reckon those dreams are a bit dull.
I dream about lavender icing and white chocolate chips. I dream of caramel sauce being poured from an enormous jug onto a giant treacle sponge. I dream of great vats of whipped cream and enormous sacks of coloured hundreds-and-thousands pouring out over my head and raining down on my body. I once dreamed that I was being chased through a field by a giant brown cupcake with stick legs and big waving hands but I’m not sure what that meant.
Anyway, it’s a safe bet that most nights when I close my eyes, some sort of cake is going to make a feature in my dreams.
I never, ever dream about my illness. I guess I live so much of it during the day that my subconscious doesn’t really need to explore it durin
g the night. That’s why I like being asleep so much. When I’m asleep, it’s like the CF doesn’t exist.
The night before my annual review it takes me hours to get to sleep.
When I finally drift off, exhausted, in the early hours, I don’t dream at all.
That scares me more than any nightmare I might have had.
It’s like being dead.
***
Mum insists we have a good breakfast even though my insides are really sore and my stomach is churning and making weird noises.
‘It’s a very long day for you today, Amelie,’ she says. ‘You need some energy.’
I give a feeble snort. I can barely sit up straight at the table after my bad night. I can’t help thinking back to my last annual review when I went for a run round the block before we headed off to the CF centre and spent the whole day bouncing off the clinic walls with frustration, desperate to get home and bake.
Today I almost feel like it would be a relief to spend some time lying around in hospital doing not-very-much. I haven’t spoken to Harry since he got angry two days ago and he hasn’t texted me which is well out of character. Gemma reckons that boys need to go off and have sulking time on their own and that he’ll come out of his cave when he’s ready, but I’m not so sure.
I hate not speaking to Harry. It’s like the rug has been pulled out from under my feet. He’s my support system. He even offered to come with me to all my medical appointments, but I’ve never let him. I reckon it’s bad enough Mum seeing me at my worst without Harry having to see it as well. Something about tall, fresh-faced, glowing athletic Harry looks all wrong against the clinical whiteness of the sterile hospital rooms where I spend so much of my time.
‘Take it off the heat,’ I say to Mum. She’s attempting to make scrambled egg but she’s never quite got the technique right, leaving it on the gas for too long so that it always turns out dry and rubbery and split into hundreds of little bits. I like my scrambled eggs soft, yellow and creamy and to get that result you have to take the pan away from the heat before they’ve finished cooking.
The Baking Life of Amelie Day Page 5