‘Amelie,’ she says, ‘I’ve discussed this with your father. We really don’t think that any time spent in London is going to be any good for your health at all, and your health is our priority.’
I pull a sulky face and shovel in forkfuls of bright yellow egg. The free-range ones are always this sunshine-yellow colour, like the chickens have spent many happy hours pecking about in sun-lit grass. The bacon is a brilliant contrast – sharp, salty and with a nice fatty aftertaste. I’ve served the bacon and eggs on soft home-made brown bread with loads of butter. Dad says that my cooked breakfasts are the best in the world and I reckon he might just be right.
‘Can’t we see how I am in a couple of weeks and make a decision then?’ I wheedle, pouring Mum a steaming hot cup of tea. ‘We don’t have to decide now, do we?’
Mum screws her mouth up. I know she finds it really hard to say no to me. I can almost see the two different sides of her head arguing with each other – the one who wants to encourage me to follow my dream versus the one who promised Dad and the doctors to look after me and make sure I didn’t get worse.
‘Look,’ I say, stuffing down more eggs and bacon. ‘Appetite back. See? And I feel loads more energetic!’
That’s a complete lie. My chest feels heavy and sore and I’m exhausted.
Mum yawns and stands up.
‘Well, I don’t,’ she says. ‘It’s one o’clock. I suggest we both try and get some sleep. You said you wanted to go back to school in the morning. But I’m sorry – as far as London goes, my decision still has to stay the same.’
My heart sinks towards the blue tiled floor.
‘That’s right, leave me with all the washing up,’ I mutter, but not loud enough for her to hear me. My mess – I need to clear it up. That’s one of the many rules in this house.
‘I hate you, CF,’ I say to my illness as I haul myself up the stairs to reunite with my bed. ‘Why do you always have to spoil everything?’
I haven’t even done my lung clearing yet.
I take a good snort of my special steroid inhaler to help with lung inflammation and to relieve tightness in my chest. Then I have to do my physio. When I was little Mum had to do the physio on me every single day, whacking me on the back and shoulders and tapping me on the sides in a special way so that all the gunk would come out of my lungs. Now that I’m older I do my own physio by doing special controlled breathing exercises, but I still get a lot of chest infections and I’ve missed loads of time at school because I can’t stop coughing and feeling out of breath.
I do forty minutes of tedious exercises and then I lie in bed feeling sad a while longer and then the next thing I know it’s morning and Harry has just texted to say he’ll walk me to school if I’m going in.
Harry.
Thank goodness for kind, sweet, handsome romantic Harry.
He’s kind of my salvation.
Totally Moreish Cheese Straws
To make 12, you will need:
A little bit of butter or margarine
100g (3 ½ oz) plain flour
A pinch of salt
A pinch of cayenne pepper or mustard powder
50g (1 ½ oz) butter straight from the fridge, chopped into little bits
1 egg yolk
50g (1 ½ oz) strong cheddar cheese, grated (the larger the flakes of grated cheese, the better)
Some iced water
1 tablespoon of grated Parmesan (optional)
A pinch of dried sage or rosemary (optional)
First you need to heat up the oven to 200°C (390°F/gas mark 6). Grease a baking tray with some butter or margarine.
Sieve the flour, cayenne/mustard powder and salt into a bowl. If you’re into herbs you could sprinkle in some dried sage or rosemary at this stage too. Add the cubes of butter and rub it all in with your fingertips, until you are left with a bowl of what looks like breadcrumbs.
With a spoon, mix in the egg yolk and the grated cheddar cheese and add a small amount of the iced water (you can chill it in the freezer in a bottle just before you need it). With your hands, knead the mix into a smooth ball of dough. Put this in some cling film and leave it in the fridge for about 10 or 15 minutes.
Put some flour on a board or work surface and also on your rolling pin. Roll out your dough into a rectangle which is about 4 or 5 millimetres thick. Then get a sharp knife and divide the rectangle into 12 long equal pieces.
Put them on the baking tray and into the hot oven for about 12 minutes until golden and slightly puffed up. You can sprinkle them with Parmesan if you like (I don’t) and then put them on a wire rack to cool down. Or you can scoff them straight from the oven, like I do. And be warned – once you’ve eaten one, you will have to eat another! That’s 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
‘Ow,’ 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.
I’m at the special CF centre. It’s a bit like a hospital, but it’s only for people with CF. There’s a whole team of people here to help people like me. As I got diagnosed when I was a tiny baby, I’ve been coming here forever and know everybody in the building. There’s Mr Rogers, the consultant who’s in charge of my health. Then there’s Trisha, the nurse. She does things like pump antibiotics into my portacath when I’ve got a chest infection and she takes special swab samples from me every few weeks to check that I’m 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 I’ve got an infection, I’m pumped full of extra strong antibiotics, sometimes for many months. Trish also comes to our house if I’m feeling really ill. Mum and Trish are more like friends now, she’s been part of our lives for so long.
I also see quite a lot of Diane. She’s the dietician who advises me what to eat and when. There’s Fiona, the social worker who helps Mum with school issues and tells her how to claim the special allowance she’s entitled to for looking after me. And then there’s 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 doesn’t 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. I’m 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 don’t really want Gemma coming round in the middle of it, even though she’s 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 I’m at hospital having my portacath flushed through. I have to have this done every month to make sure that it doesn’t get clogged or else my antibiotics can’t 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.
I’m in a room of my own. People with CF have to be very careful not to infect one another. That sucks. It’s bad enough being in hospital so often without being able to speak to people your own age who might just understand what you’re going through.
I’ve got a pile of food magazines on my lap and I’m leafing through the latest recipes by Jamie, Nigella and Gordon, whilst trying not to notice what’s going on in my chest.
‘She’s been more poorly this month than she
’s been for years,’ Mum is saying to the consultant who’s just come into the room. I’ve known Mr Rogers for years, ever since I was about six. I still don’t really understand why the consultants here are called ‘Mr’ and not ‘Doctor’ even though they ARE doctors, but I’ve got used to it now.
‘Hi, Mr R,’ I say, flicking the glossy pages of a BBC food magazine. ‘How’s it hanging?’
Mum sighs.
‘Not a great question to ask a doctor,’ says Mr Rogers. ‘I’m likely to give you a long, medical and potentially boring answer.’
I smile. I like Mr Rogers and his weird sense of humour. Somehow he always manages to make me feel like Amelie-The-Person rather than just Amelie-The-Patient.
‘Your Mum tells me you want to go to London,’ he says. ‘Some big competition, I hear. That does sound very exciting.’
‘Yeah,’ I say, ‘but has she also told you she’s not allowing me to go?’
Mum flushes pale pink when I say that. Her face clashes with her red jacket. I think of the pink slices from a tub of Neapolitan ice cream and the red of the strawberry sauce I like to pour over them.
‘I was just about to get round to that,’ she says, all defensive and huffy. ‘Mr Rogers is a very busy man.’
He perches on the edge of the bed where I’m lying.
‘Not too busy to discuss your health,’ he says. ‘So I take it you still want to go to London?’
I put down the magazines with a sigh. I’ve just found a glorious twist on a traditional baked cheesecake recipe which involves major use of chocolate.
‘Of course I do,’ I say. ‘It’s only like the biggest baking competition in the country. And I don’t see why I can’t still go, so long as I’m careful and look after myself.’
Mum stands up and folds her arm. She looks tired, wary and wired up all at the same time.
‘I’m getting a bit fed up of this stuck record,’ she says in a voice I hardly ever hear. ‘I’ve told you you’re not going, and that’s that. Don’t try to swing me by dragging Mr Rogers into it all.’
Mr Rogers stands up and clears his throat.
‘It’s your annual review next week, isn’t it?’ he says. ‘Perhaps if I might suggest, Mrs Day, we could make a final decision based upon the results of that?’
Mum flushes again. I can tell that she’s angry that Mr Rogers hasn’t entirely backed her up.
‘Oh, alright,’ she says. ‘But I can’t see Amelie being much better than she is now and right now she is in no fit state to go anywhere. I’ll be at the coffee machine.’
She goes out of the room and lets the door bang behind her.
Mr Rogers and I regard one another for a moment. He has kind eyes – dark like chocolate raisins and with a sort of glint behind them. I try to picture what his kids are like and reckon that he’s a good father.
‘I only want to get on with my life,’ I say in a whisper. ‘That’s all.’
Mr Rogers nods and puts his hand on my shoulder for a moment. The brief gesture causes tears to well up in my eyes.
‘I’ll leave you in the capable hands of Sister,’ he says. The nurse is unhooking the flush from my portacath. ‘Don’t worry. I’m sure we can sort something out.’
My heart lifts a little.
‘Oh, here,’ I call after his retreating back. ‘I made you something.’
Mr Rogers comes back and peels back the lid of the box I’m holding out.
‘I did them all on a medical theme,’ I say, shy.
He bursts out laughing. I’ve been practising biscuits for the competition. Inside are some iced golden syrup cookies with little piped pictures on top. I’ve done a pair of lungs on one, a heart on another and a selection of pills, beds, syringes and stethoscopes on the rest. It took me half the night to perfect the drawings and I did them in a dark green colour in the same shade as Mr Roger’s operating overalls.
‘You are something else, Amelie,’ he says, wiping his eyes. ‘I can’t eat these. They’re too good. But of course, I will.’
Then he leaves me, still laughing to himself. I let the nurse clean me up and prepare me for going home.
***
Dad calls round to see me after I get home from hospital.
I’m in the kitchen making mini carrot cakes with buttercream frosting. I’ve cut some carrot shapes out of my leftover fondant icing and coloured them orange and I’m just sticking these on top of the finished cakes. There’s a pile of homework upstairs with my name on it, but after a day spent in the hot, disinfectant-smelling air of the hospital, I fancied letting my creative vision run riot so I’ve ditched the idea of doing maths until later.
‘There,’ I say, standing back to admire my handiwork. The little square cakes stand to attention in neat lines on the rack, each one covered in fluffy buttercream which I’ve run a fork through to make peaks that look a bit like snowdrifts.
‘Oh yes!’ says Dad, heading towards the rack with a purposeful look in his eye. ‘I reckon you need a second opinion on those from your Chief Taster.’
I sigh.
‘Harry is Chief Taster,’ I say. ‘You can be Back-up Taster, if you like.’
Dad frowns.
‘I’ve been relegated to the sidelines,’ he says. ‘Wow. And I’m your favourite Dad and all that.’
I let him pick out a cake and bite into the rich sponge.
‘Good?’ I say. ‘I added some lemon juice just to make it a bit different.’
‘Mm,’ says Dad with his cheeks bulging. ‘Excellent. And I would love to see what you can do with a courgette.’
I smile and click the kettle on. Mum comes downstairs and gives Dad a peck on the cheek.
‘Thought I heard you,’ she says. ‘Why don’t you come outside and admire my petunias?’
‘Oh, right,’ says Dad. ‘How much more excitement can one man take?’
He winks at me and then heads off outside with Mum and they walk around our back courtyard garden, staring into pots and tubs and chatting avidly all the time.
I make the tea and bang on the window and they wave but don’t come in.
I’m about to bang again and then I realise what they’re doing. Why Dad has come over, in fact. They’re discussing the London question. They’re talking about me.
For a moment I feel a surge of anger. Then I bite it down again. I know it’s only because they care. But if they’re discussing something about my future, then really I should be out there taking part in the discussion with them.
I put the three mugs on a tray and add three of my mini carrot cakes and I head out the back. Mum and Dad have stopped looking at plants. Mum is now facing Dad with her hands on her hips which can’t be a good thing, as that’s the position she adopts when she’s telling me off about something. Dad is staring at his feet and shuffling them about which is also not good.
I sigh and offer the tray.
‘I know you’re talking about me,’ I say. ‘Which is why I’ve come out here. Plus I can’t actually lip-read through the window which is kind of annoying.’
Dad smiles when I say this. Mum doesn’t.
‘Sometimes your father and I need to talk about stuff in private,’ she says. ‘You could have given us another minute, surely?’
I look at Dad. He shrugs and reaches for a mug of tea.
‘Your mother’s in charge here,’ he says. ‘What she says, goes.’
He says this in a mechanical way, like he’s rehearsed it. I look at him more closely. He doesn’t look very pleased. I’m not sure whether he’s annoyed with Mum or with me for coming outside and interrupting.
‘Dad,’ I say. ‘What do YOU think about me going to London? Honestly?’
Dad glances at Mum. She gives him an imploring sort of look, like she’s trying to affect what he’s about to say, but Dad sits down on the edge of a tub full of pink begonias and takes a gulp of his tea.
‘Honestly?’ he says. ‘I think it’s a cracking idea.’
‘John!’ says my mother in a shocke
d tone of voice. ‘I thought we just agreed?’
Dad rubs his eyes and blinks.
‘I didn’t agree anything,’ he says. ‘You told me not to say something, but Mel has asked me a direct question and I’m going to give her a direct answer.’
I look at my Dad with new eyes full of respect, love and a bit of fear. Does he know that disagreeing with Mum can be like throwing a lit match into a room full of petrol? Oh yeah – he does. That’s why they got divorced.
‘Oh, Gordon Bennett,’ says Mum. She often mentions Gordon. Neither of us has ever worked out exactly who he is. ‘Thanks a bunch. You’ve just made my next few weeks a hell of a lot harder.’
She looks really upset, like she’s going to cry. I get up and offer her the cake plate.
‘Cake is not the answer to everything,’ she snaps. Then she looks at the tiny orange carrots with their green stems and relents. ‘Oh go on then – just one.’
She eats it with an angry look on her face.
‘For what it’s worth,’ says Dad. ‘I happen to think that Mel doing this competition is a fantastic idea. Our beautiful, talented and creative daughter has been offered an exciting opportunity which she’d be a fool to pass up on. Surely this is what her life should be like? Shouldn’t we be supporting this? Don’t you remember what the counsellor at the CF centre said?’
I remember full well what the counsellor said, because I was there too and it was the first thing that anybody at the centre had ever said to me that made perfect, total sense.
The counsellor said that, now I was in my teens, Mum ought to stop acting so much like ‘the CF Police.’ They meant that she was trying too hard to control what I did because she was so anxious about my health. The counsellor reckoned that stopping me doing things I really wanted to do was having a far worse effect on me than just skipping a treatment or forgetting to take a pill.
Mum gets a folding chair out of the shed and sits down with a sigh.
‘Of course I remember,’ she says. ‘I love the fact that Amelie has got through to the quarter-finals. I’m as excited by that bit as you are, John. But the fact remains that a week in Central London is going to be detrimental to her overall health. And isn’t THAT our main concern? Damn, this carrot cake is good!’
The Baking Life of Amelie Day Page 4
