He looks at me as if an idea is brewing. ‘Sit.’
I head over to the sofa.
‘Pad.’
I pick up my lyrics book.
He sits down. ‘Fresh page. New song. “The Right Time”.’
‘Isn’t our hour up?’
‘I’m not going anywhere. Are you?’
21
‘I can come with you if you want?’ Mum says over breakfast.
‘Don’t worry,’ I assure her. ‘It’s only a check up, unless you want to see Professor Taylor?’
Dad and Jake tease Mum and me. ‘You both have the hots for the Prof,’ they say.
She pours herself another cup of coffee, laughing. ‘Don’t be silly. How was your music lesson yesterday?’
‘It’s not a lesson.’
‘Your session then?’
‘Good. We played around with some lyrics and sound.’
I don’t say anything more. Somehow I want to keep my meetings with Pete private. It’s my time with him, being in that studio, it’s the one thing that’s mine, if that makes sense. But I love her for caring and supporting me.
‘What was that for?’ she asks when I wrap my arms around her.
As I drive to the Brompton I think more about Mum. She had to abandon any idea of training to be a dress designer when I came along, like a thunderstorm, shaking up their world. Mum counts herself lucky that Dad has given her the freedom to be a full-time mother, but is that what she had always wanted?
Mum and I could drive to the Brompton blindfolded. I wonder how many hours we’ve spent queuing outside the pharmacy before loading the car with all my meds over the years. I see Mum packing my drugs into cool bags before we went on holiday, making sure we all knew how to say in French, Spanish or Italian, ‘Where is the hospital?’ or ‘Help! Please call us an ambulance, immédiatement!’ I think of Mum and I skiing when I was growing up, Mum patiently waiting for me to get my ski boots on, me determined to do it without help. Squeezing my funny-shaped feet with their collapsed arches into skiing boots was as painful, surely, as giving birth. My poor balance and limited puff made skiing almost impossible too, but I wanted to be like Jake and Dad, who both skied like James Bond. Dad could happily live in the mountains with a pair of skis and little else, but for me the environment was not a friendly one. With Mum by my side we graced the nursery slopes, Mum picking me up whenever I fell, which was pretty much all the time. I didn’t enjoy it or the biting cold but I loved the fact I’d done it. The only thing I have failed to do is water ski. Dad tried for hours to get me upright on those pesky little skis but all I got in return for my efforts was a lot of frustration and aching limbs.
I had to admit defeat, a hard pill to swallow.
There have been times when I have felt guilty that I took over Mum’s life, that maybe she lost a part of her old self when she had me. I remember thinking this after my three weeks at university, when I had to be admitted straight to the Brompton to have part of my right lung removed. After my operation I was drifting in and out of consciousness, aware of her presence by my side. I could smell her familiar perfume; it had the scent of figs. ‘Just when you thought you’d got rid of me,’ I’d said, woozy and tearful.
She had clutched my hand, tears running down her face, too. ‘I have only gained from having you. I have gained more than you could imagine.’
I could hear the machines bleeping around me; could feel tubes in my body and pain in my mind. ‘I can’t do this,’ I told her. I’d stared up at the ceiling, unable to look her in the eye. ‘I’m not sure I can live like this anymore.’
‘Yes you can. You can and you will.’
I don’t need to look too far to see where my determination comes from.
I stand on the weighing scales, wishing for once they’d lie.
‘How’s your appetite?’ the dietician asks me, noting down my weight in my ever-increasing yellow medical file.
‘So so,’ I reply, hearing the haunting sound of coughing through the paper-thin walls.
‘What are you managing for breakfast?’
‘Yoghurt.’
‘Any chance you can squeeze something else in?’
‘A fag and a black coffee?’
She smiles at me. ‘Oh, Alice.’
‘I’m never that hungry.’
‘How about eating later on in the morning then? Some porridge or a fried egg and baked beans . . .’
That reminds me of Tom.
‘What’s so funny?’ she asks.
As much as I love to gossip I can’t begin to tell her that story. . .
‘What food do you love?’ she persists.
‘Takeaway, offal and mashed potato.’
She writes half of it down before looking up at me.
‘I really do like offal and mashed potato.’
‘Eat it then, it doesn’t matter what you have as long as you eat something.’
In the waiting room I can’t help staring at a blonde girl, pale as a ghost and slight as a sparrow; she looks as if she can only be about fourteen. I wonder how much she weighs. When I was her age, often I’d wear a tracksuit under my jeans so that I didn’t look quite so thin. I send Susie a text to let her know Professor Taylor’s clinic is running well over an hour late, suggesting we meet at the café close to South Kensington tube after my appointment. As I place my mobile back into my handbag, mentally I make a list of the things I need to do later. Book sunbed. Pay speeding fine. Wedding present for Jake and Lucy. Their wedding is this summer. Is it too early to ask Tom? Work on ‘The Right Time’ . . . ‘A song is about atmosphere,’ Pete had said to me. ‘Get the mood right and then the words will follow.’ I sang ‘If I Fall’ to him again at the end of our session. ‘You have a unique sound, and you can certainly belt it out,’ he said.
‘Are you saying I have potential?’
‘I wouldn’t be here if you didn’t,’ was as close as I got to another compliment, ‘but don’t get carried away, we have a long way to go.’
I have only been seeing Pete for two months but I close my eyes, already imagining my name in bright lights and hearing rapturous applause. I see myself walking down the red carpet before collecting my BRIT award on stage and thanking my army of fans, along with Pete, who always believed in me. I see my international award-winning album in every single shop with gold lettering, ‘OVER ONE MILLION COPIES SOLD’. I hear people saying, ‘Wow, that’s her! That’s Alice!’ They flock around me, asking if they can have my autograph . . .
I jolt when finally I hear, ‘Alice?’ I open my eyes to see Professor Taylor in his white coat beckoning me to follow him into his office.
‘How are you feeling today?’
‘Great,’ I say, sensing he’s troubled about something in my notes. ‘The singing is going really well, too. I haven’t noticed any difference with my lungs.’
‘Good,’ he mutters, shuffling paperwork on his desk.
Next he’s examining me with the stethoscope that feels cold against my chest. ‘Breathe in, breathe out,’ he says with another tap, before telling me there are some crackles in my chest. There is an unusual atmosphere in the room, a prolonged silence. He gets up and draws back the curtain that hides the examination bed in his room. ‘Can you lie down on the bed and undo your trousers. I need to feel your stomach.’
It’s always odd undressing in front of Professor Taylor, even when he has known my scarred body for over ten years.
As he approaches the bed I’m beginning to worry that there is something seriously wrong. Were the results of my blood test that bad? Has my singing made me significantly worse? Stop being paranoid. He’s probably having a bad day, that’s all, his clinic is running late and he hasn’t had any lunch. After a few prods he tells me to put my clothes back on and to join him when I’m ready.
I feel nervous as I sit down opposite him.
‘How would you say you are, generally?’
I hate the way he is asking this question again because his tone demands a more honest respons
e. I know I’ve been overdoing it recently, what with Tom and Pete. I regard my body with as little interest as my car. All I want is for it to be serviced and back on the road. Even if my tyres are slightly flat I don’t care so long as my stereo works and I can get around.
‘The only thing I’d say is that I’m on more IVs than I was before.’ It used to be every three months, now it’s every two. ‘But apart from that I’m fine.’
‘Alice.’ He takes off his glasses, rubs his eyes. ‘There has been a significant decline in your lung function for some time now. I think you should consider a transplant.’
‘A transplant?’ I repeat so quietly that I can barely hear myself.
‘Yes.’ The kindness and concern in his eyes make me feel even worse, as if I could cry right in front of him. And I can’t do that. What would he think of me if I crumpled into tears? He’d think I was weak and I’d hate him to see me like that.
‘I don’t want to go on a list,’ is all I am able to say, my mouth dry, my body numb. It has been a subject I have pushed to the back of my mind for years.
‘I’m not suggesting right this minute but perhaps the time has come for us to discuss what it entails in more detail.’
I nod, even though I don’t want to. He says my liver disease would make it unlikely that I’d survive a lung transplant on its own. I have had problems with my liver, linked to my CF, since childhood, and the damage has built up over the years. That’s why I can drink so little alcohol. He tells me that if my liver were stressed by a major operation such as a transplant, its reserves would be overwhelmed. ‘Single or double lung transplantation is therefore considered difficult,’ he continues, and I’m trying to listen and not run out of his office screaming. ‘The operation is much simpler if the heart and lungs are transplanted as one unit, since there are fewer connections. So we’re looking at a heart, lung and liver transplant. It’s the only option.’
He goes on to say that before I can even be accepted on a list, every kind of test has to take place to make sure it’s safe for me to undergo the surgery.
‘There’s also the donor. We would have to find one who matched your blood type, height and weight. People can go on lists and wait for months, a year or more before they find a match. Sometimes they don’t. Or they have the transplant but unfortunately they reject the organs.’
And they die.
Stop. Please stop.
The way I see it is I have a transplant operation that I’m likely not to survive or I don’t go on a list and I live for a few more years . . . I know which option I prefer.
‘Alice, you’re not ready yet,’ he says calmly, sensing my fear. ‘To use donor organs for someone like you, who is still relatively well, would mean turning our back on someone who is in need of the lungs straight away. But I do think the time has come for us to think long term about your future.’ He closes my file. ‘Remember, transplants can save lives. Patients can go on to lead virtually a normal life with very few of the previous CF demands. Your time wouldn’t be dominated by treatment and physiotherapy and you’d see a lot less of me, surely a bonus,’ he suggests, trying, but failing, to raise a smile. ‘They have given hope to many; along with their families.’
The thought of breathing with a clear chest, without coughing and physio, sounds too good to be true, like a blind person being told they may see again. But . . . ‘I’ll have more IV treatments, I won’t pretend I’m good when I’m not, I’ll become a model patient.’
He looks me in the eye. ‘Alice, this isn’t going to go away.’
There’s a terrible silence.
‘With you, I never know what’s going to happen. I think you definitely have another two years, but if someone were to ask me if you’d live for another five I couldn’t honestly answer.’
Slowly I walk past the pharmacy, down the ramp and out of the hospital. A taxi driver beeps his horn when I cross the road. ‘Mind where you’re going, love!’ he calls out of his window. I head to the café, stop when I see Susie sitting by the window reading a book. She looks up, waves and then mouths something. I can’t make out what she’s saying. When I’m inside, she greets me with, ‘Alice, you’re drenched!’ She ushers me into the warmth before guiding me to her table. She helps me sit down, exclaiming, ‘Where’s your brolly, you’ll catch your death.’
I stare at her, still numb.
Susie calls over a young dark-haired waitress. ‘Got a towel or something warm my friend here can have?’ She gestures to my soaking hair. ‘And we’ll have two cups of tea with extra sugar and a slice of your chocolate fudge cake to share. Thanks.’
She turns back to me. ‘What’s happened?’
I look at her, not knowing where or how to begin, since she is in the very same boat as me, the boat that is going to hit the iceberg and sink. It’s a matter of when, not if . . .
‘What’s happened?’ she persists. ‘You’re scaring me.’
‘We don’t deserve this,’ I say as the waitress comes over with our tea and cake, along with a navy towel. Susie hops off her chair and dries my hair. Her touch is maternal and comforting.
‘Rewind,’ she urges, taking a deep breath. ‘What did the Prof say?’
I’m twenty-six. Rage suddenly burns inside. How dare CF take its pair of scissors and cut my life in half, stealing precious years from me, from Susie, from Milly . . . from the people I love.
‘He’s given me two years to live.’
Susie stops drying my hair and sits down opposite me again. Colour has drained from her skin. ‘He can’t say that.’
‘He says it’s time for me to think about a transplant.’
She reaches for my hand.
‘He’s mentioned the T-word before, when I was nineteen,’ I say.
‘After the surgery on your lung?’
I nod. ‘I didn’t pay much attention back then. He said it as if it were something far into my future, nothing to worry about.’
But today . . .
I feel as if the enemy is catching up with me. Tapping me on the shoulder, breathing into my ear.
My face crumples. ‘I don’t want to die, Susie.’
Death has always been over there, far away; never here, with me.
‘You won’t.’ But I can tell she feels helpless, her eyes clouded with fear, too. What can she possibly say that can make this better?
I stare out of the window, where a couple of girlfriends with shopping bags are laughing as they weave their way in and out of puddles. Susie follows my gaze. ‘I wish they understood how lucky they are,’ I reflect.
‘People don’t, though. Life doesn’t work like that.’
A man enters the café, dressed in a suit and carrying a briefcase. He’s talking on his mobile, clearly cross about something. I want to ask him if he’s ever had to face up to his own mortality. I want to tell him that whatever it is making him frown and curse, it can’t be that bad. ‘Here’s a real problem for you,’ I’ll say.
But why would he care? Why should anyone who doesn’t know me care?
I have never felt more alone.
After his call, he lights up a cigarette. Susie fans away the smoke that’s coming from his direction, muttering, ‘You have a pair of healthy lungs, look what you’re doing to them.’
‘I don’t want to die,’ I repeat.
‘Now you look here, Alice,’ she says, handing me a paper napkin. ‘I love the Prof, right, but he can’t give you or me some “best before” date. We’re not going anywhere, do you hear me?’
Yet all I can hear is Daisy Sullivan: ‘She won’t live long enough to become famous. She’s ill! She’ll be dead soon!’
All I can see is my dream of getting an album recorded destroyed before it’s barely begun . . .
‘Alice, we are not budging.’ Susie slices the cake in half. ‘Have some. You need sugar.’
Already I’m dreading telling Mum and Dad. Maybe I shouldn’t? What’s the point of telling anyone about today? Mum and Dad know only too well the fact
s about CF and life expectancy. They’ve known from day one. So does Tom.
I see him that very first time we met at Jake’s show. The way he had looked through the window and smiled.
I am falling in love with him.
‘Alice?’ Susie is sitting right beside me now, clutching my hand. ‘You haven’t heard a word I’ve said, have you?’
I shake my head.
She reaches into her rucksack and produces a brochure. ‘London School of Fashion is running a wig-making course,’ she says, turning to the right page, her hands trembling. ‘You know I’ve always been obsessed by theatre, costume and hair, right? And then when Mum was so ill on chemo and couldn’t find any decent wigs . . . When you told me about your music, that you were going for it, you inspired me to look into this.’ She waves the brochure at me now. ‘I’m doing this because of you. I’ve signed up this autumn. It’s three years, but I can do it part time to fit in with the salon.’
I summon the energy to say, ‘That’s great.’
‘Now if the boot were on the other foot, if I was the one who’d been told today that I had to think about a transplant, you wouldn’t be telling me not to do the course, would you? What I’m trying to say, badly,’ she adds with a small smile that shows off the gap between her front teeth, ‘is the ship still sails. We might not always sail in a straight line but we have to carry on as if we’ve got a life to lead, not a death sentence over our heads.’
I nod.
‘You’ve just met Tom, too. You told me you’d never been happier. You mustn’t give up. If you do, I do.’ She leans back in her chair as if it’s as simple as that. ‘I can’t be in this fight without you, Alice. You and I, we’ve still got things to achieve. I’ve got wigs to make and you’ve got songs to sing, stars to reach in the sky.’ She leans over to me, wipes away a tear with her thumb. ‘And if our third anti support musketeer were here, she’d be saying exactly the same. You are one of the bravest—’
‘Don’t . . .’ I warn her, frightened she’ll set me off again.
‘Well you are!’
‘So are you,’ I say, both our faces crumpling into tears, attracting the attention of the people sitting at the next-door table.
A Song for Tomorrow Page 10
