Each day Mum has tried to encourage me to get up, have some fresh air, eat something, anything to keep my strength up. But all I’ve wanted to do is stay in bed with Charlie and Nutmeg. I can’t even face seeing Pete. I missed our last session. What does my dream mean if I don’t have Tom by my side? Why bother? It means nothing.
What’s the point in living? Why struggle to breathe anymore?
Mum gestures to the bowl but I can’t eat a thing. All I can feel is this deep knot and ache in my stomach. ‘Have a little,’ she pleads again, ‘with some bread.’
When I see the anxiety in her eyes I crumple into tears. ‘I’m sorry, Mum.’
‘What for?’
‘For being like this, such a burden . . .’
I dissolve into more tears when Mum holds me in her arms, saying, ‘Don’t you dare say that, do you hear me? Don’t you dare think that.’
I cling on to her, not wanting her to let me go.
When I breathe it hurts. I have never known pain like this. CF is nothing in comparison to losing Tom.
‘I know this is hard but don’t give up,’ Mum says. ‘We are all here for you and we love you so much.’
Finally I take the bowl of soup from her, the warmth comforting. ‘Thank you, Mum, for everything.’ She stays, making sure I eat every single mouthful.
I spend the rest of the week in bed crying in between Mum nursing me with hugs and bowls of homemade soup and Dad coming down after work with a small glass of medicinal port to help me sleep. Mum is determined I eat to keep up my strength, ‘just in case we get the call,’ she says, gesturing to my bleeper. The transplant team reinforced how I have to remain as well as I can be to undergo the surgery; it wouldn’t be safe, nor allowed, if I’m on an IV course with a chest infection. I still don’t feel like talking to anyone on the telephone, my throat too sore from crying. Cat and my anti supporters are the only people I can face. When I see Cat, she doesn’t try to offer false hope that Tom will come back, but her company gently lifts my spirits.
Finally, when I feel strong enough, Mum and I gather Tom’s belongings from my bedroom. Everything must go. It’s too painful having his things here. Mum irons his clothes and together we pack them into black bin bags. ‘Not that one,’ I say when I see her ironing his last T-shirt that he often wears in bed. I tuck it under my pillow.
When Mum drives over to Tom’s flat to return his belongings it feels too final. I lie down, holding his T-shirt in my arms, the only thing I have left of him. I breathe in his smell, imagining his arms around me, hating him for doing this to us and hating myself for loving him even more.
51
Mary’s Diary
January 2002
Tom was nervous when he asked me if I would like to come in. We’d arranged to meet so that I could return his clothes. I didn’t want him coming to the house as he’d suggested, I thought it could upset Alice even more to see him or just hear his voice. I was tempted to give him the bags and run, pretend I hadn’t put any money in the parking meter. ‘Please stay,’ he said, clearly sensing my hesitation.
He led me downstairs into the kitchen. When I saw the table laid out with a teapot, cups and saucers, even little silver teaspoons, I wanted to weep. Tom had also bought a fruitcake. I turned down a slice, saying I mustn’t stay too long.
As he poured the tea I wanted to shout, thump him on the chest, beg him to come home and make my daughter happy again. He was unable to look me in the eye when he asked, ‘How is Alice?’
She’s been crying all week. She won’t eat. She has nightmares. She loves you. She hates you. She misses you. You have broken her heart.
‘She’s . . .’ I gulped hard. ‘She’s struggling,’ is all I could come up with.
‘You should have ripped my clothes to shreds,’ he said, his blue eyes wounded.
I could see his pain was as deep as Alice’s.
As deep as mine.
52
Alice
I walk into Pete’s studio and find him sitting at his desk, writing. ‘How are you feeling?’ he asks when I flop down on to the sofa.
He swivels round in his chair to face me. I can smell his familiar lemon and basil shower gel and the cup of coffee and Danish pastry means he’s been to the gym. That’s what annoys me. I’m trapped in a body that can’t vent frustration.
‘Are you feeling better?’ he asks.
‘I’m fine,’ I say, feeling my face crumple already. It’s been twelve days since I broke up with Tom and if anything the pain is worse. I didn’t know it was humanly possible to cry this much. Next thing I know, Pete is on the sofa, rocking me in his arms, saying, ‘What’s wrong? Tell me what’s wrong.’
Pete strokes my hair as he listens. I like it; it’s comforting. I close my eyes, imagining it’s Tom’s fingers, Tom’s hands touching me . . . ‘How am I going to manage without him?’
‘You will.’
‘It’s a lot for anyone to take on,’ I admit, catching my breath. ‘He has dealt with things you’d never have to deal with in a normal relationship.’
‘Maybe Tom will think it through. Believe me, all couples go through dark patches,’ he says, as if he’s going through one of his own. ‘We do or say things we regret.’
I shake my head. ‘It’s over, Pete. He wants a family. He wants to plan his future. I can’t give him that.’
‘But you can give him so much more!’ Pete leans towards me, taking my hands into his. ‘In my twenties, I spent so much of my time spiritually bankrupt. The only things that mattered to me were success and money. I didn’t have a clue how to be happy or how to be me until I met Katie. And then you come along too, like some force of nature, this extraordinary charming woman who blew me away.’
Pete looks relieved when a small smile surfaces.
‘When I told you to join the long queue of people who wanted to be famous, you said, “I don’t like queues. Especially not long ones”,’ he mimics me. ‘You completely knew your mind.’
‘I bet you wished you’d turned me away.’
‘Never.’ He looks me straight in the eye.
‘Don’t be so nice, you’ll make me cry again, and I’m sick of crying.’ I blow my nose and wipe my eyes.
‘I mean it, Alice. I’d give my right arm to see you happy and to hear your songs played on the radio.’
I pretend to have one arm. ‘Be kind of hard to play the guitar wouldn’t it, with only one arm?’
He laughs with me. ‘Right, before I get too soppy, want to play me your new song?’ Pete hands me my guitar.
‘It’s a sad song,’ I warn him.
‘Great. I’ll accompany you on the violin.’
‘OK, let’s hear this idea,’ I say, when Pete hands me a mug of tea.
He pours some milk into his own. ‘It’s no good me pitching anymore. The only person who can sell you is you.’
‘What are you saying?’
‘How do you feel about telling your story?’
‘My story?’
‘I know you don’t want to broadcast your CF, but . . .’
‘It’s not me, Pete.’
‘But it is you. When we’re together, within seconds I forget you have the bloody illness, you’re just Alice. But the reason your lyrics are so personal is because of everything you have dealt with, things that we, Joe public, can’t imagine. That’s what makes your music different from the crowd. Here you are, no ordinary girl: you’re on a triple transplant list, singing for your life. I can’t show them how special you are sitting round a boardroom table, even if I iron my shirt and wear my best tie.’
‘I don’t want people feeling sorry for me.’
‘Well say that. Tell people to take a running jump if they call you brave, but don’t hide the part that makes you who you are.’
I’m warming to the idea.
‘If we can get you some more press it will create interest in the public eye, then we can send your demos out again and you come to meetings with me. It’s a way to get yo
u through a door that’s been bolted for too long. Your story deserves to be heard, Alice, and if that helps you get that break, well fuck me, you deserve it, don’t you?’
‘You really think it could help?’
‘It’s worth a punt.’
I find myself resting my head against his shoulder. ‘I’ll do it then, I’ll tell my story. Thanks for today, for still believing in me.’
‘I’ll never stop believing in you, Alice. That’s my job.’
53
It’s at nighttime that my story is incomplete. I lie in bed, toss and turn, the blackness my enemy. I see a person in a blue cap and gown. Only the outline of his face, no eyes, no mouth, nothing but a blank mask, and he carries a blade. I am lying below him, not on a bed or on the floor. I am simply there, floating. The silver blade gets nearer to my chest. I scream ‘stop!’ but no one can hear me. I can feel the edge of the knife against my skin. It slices through me, cuts deep into my flesh. I see a pool of blood. I scream again, I can hear footsteps, someone calling out my name. I can hear ringing: ‘Alice, Alice!’
I wake up gasping for air. It’s the middle of the night. Just past one o’clock. ‘It’s the hospital. It’s them,’ Mum says. My bleeper is also ringing.
Petrified, I take the telephone from her.
‘Are you well?’ Diana, the transplant coordinator asks, her voice calm.
‘I’m fine.’ I’m scared. Really scared.
‘Are you on any IVs at the moment?’
‘No. I’m good.’ Dad rushes into my bedroom in his dressing gown. Mum clutches his hand.
‘We have a paper match,’ Diana says. ‘How quickly can you get here?’
I always believed that if I received ‘the call’ it would be in the middle of the night. I don’t know why, maybe it’s from watching too much drama on television. The expectation is a hair-raising journey to the hospital, the driver ignoring red traffic lights; tyres screech and burn. The reality is the roads are quiet, and so are we. We haven’t spoken for the past thirty minutes. I feel as if we are disconnecting ourselves from what might possibly happen. It’s too awful to predict the outcome, so let’s not talk about the one and only thing we can think about. Let’s pretend the white elephant isn’t in the car.
The grim reality is in twenty-four hours I could be dead.
I may never travel down this road again.
My parents might return from Harefield alone.
I stare out of the window.
The team have talked me through this. I will get to the ward and have a further battery of tests. I have to be as healthy as possible for them to give me the green light. Do I want this to happen? My heart is beating so closely beneath my skin. I can’t stop thinking about Tom. What happens if I don’t see him again? The thought makes me want to cry, but if I cry I may never stop. And I can’t cry. I can’t turn up on the ward an emotional wreck.
Mum turns to me, reaches for my hand and squeezes it, asks me how I am. ‘I’m fine,’ I say.
That word deserves to be taken out of the dictionary.
She asks me if I want to talk to Jake. Minutes later she is handing me her mobile.
‘I love you, Leech,’ he says, unable to disguise the fear in his voice.
‘I love you too.’ Don’t cry. Do not cry.
It’s strange thinking who else I should call in the middle of the night. I dial Cat’s number. When I tell her the news I ask if she could call Susie and Milly. ‘What about Tom?’ Her voice is shaking like Jake’s.
‘No.’ I have no idea if I am making the right decision or not. ‘But please let him know if anything happens.’
Please let him know if I die.
We arrive on the ward at three a.m. Again the expectation is doors swinging open, nurses and doctors bustling down corridors, patients being raced down to theatre in their hospital beds. Instead, it is eerily quiet, lights dimmed, everyone asleep as the receptionist leads my parents and me into my individual bedroom, saying someone from the team will be with us shortly. I can see from the look in her eye she knows exactly why I’m here. ‘Good luck,’ she says, just as Diana arrives. Briefly she says hello to Mum and Dad before getting straight to the point. ‘The retrieval team have only just arrived, Alice. As you know, they’ll need to test out the organs to make sure they’re viable.’ She continues to have that soft, reassuring voice. ‘There may be a wait.’
‘Do you know how long?’ I ask.
‘We should know by six if the transplant can go ahead or not.’
That’s almost three hours away. Mercifully I am soon distracted by having vials and vials of blood taken, along with my blood pressure, temperature and weight. A porter picks me up to take me down to theatre in a wheelchair to have my chest x-rayed. When he returns me to the ward he says, ‘Have courage, love. I hope it will happen for you.’
I sign a consent form. I don’t want to read the small print. I know enough about the risks already.
After all my tests it’s time to have a shower. I have to wash and scrub every inch of my body with pink disinfectant. Dad leaves the room while Mum helps me into my hospital gown and paper knickers. ‘Attractive,’ I say, Mum and I managing to giggle about them.
The only thing I am now waiting for is a ‘yes’ or a ‘no’.
We hear a knock on the door. Freeze.
‘We haven’t reached a decision yet,’ Diana says.
I lie back down on my bed, but soon sit up again, unable to rest. This is like torture in slow motion. Mum and Dad sit rigid either side of me. We can’t read or talk; for a family well practised in pretending everything is as normal as possible, this situation is beyond even us. When there’s a further knock on the door an hour later, we all stop breathing. This could be it. ‘We’re getting closer to a decision,’ Diana says, and is that hope I can detect in her eyes? ‘We should know very soon.’
I want it to be yes.
But what if I die on the operating table? What if I reject the organs?
What if I never see my parents again? Mum is my best friend, my chauffeur, the person who has sat by my hospital bedside day and night. No one makes chicken or beef stew like Mum. And then there’s Dad . . . brilliant and kind, funny old Dad with the softest of hearts. My personal back and shoulder rubber. I can’t imagine not hearing him come downstairs after work to choose a bottle of wine from his cellar, his generous laughter when I tease him, telling him to go away, he’s in my space.
What if I don’t get the chance to meet my nephew or niece? I can’t imagine not seeing my anti support group either. I yearn to see Susie happy again. I long for Milly to have the courage not to hide behind her work. Then there’s Pete and Trisha, the story I’ve written . . . all our plans . . . I have no album to my name yet, nothing to show for all our hard work. They have put so much faith into me. I can’t end my story here.
Then there’s Cat and Tom. Two people who are a part of me. I am incomplete without them. Would Tom ever forgive me if I didn’t contact him? Shall I call him now? What if he’s with someone else? He can’t be, can he?
I want the answer to be ‘no’.
I can’t die. Not in the next twenty-four hours.
I’m not ready to go.
There’s a one in three chance that I will pull through this operation.
I’m not brave enough to risk those odds.
What am I thinking? It has to be a ‘yes’. I want to live. I have to. It’s extraordinary that they have potentially found three organs. This could be my only chance. If it’s a yes I could have years ahead of me. As Professor Taylor said, it’s a fantastic door to a new future. I could write some more music. I would never have to be attached to an oxygen machine again. Maybe Tom and I could get back together. We’d have our house by the sea.
It has to be a yes.
But if I die . . .
It has to be a no . . .
No, it has to be a yes.
I need to call Tom.
I feel sick. I want to rip the tubes out of my n
ose. I can’t breathe. The oxygen isn’t helping me. I’m suffocating. Help. Please help me.
‘I’m here.’ Mum holds on to me, Dad by my side too.
We hear a knock on the door.
Diana steps inside.
‘It’s not going ahead,’ she says, not wanting to prolong the agony. ‘I’m so sorry.’
From the way I feel I know now just how much I’d wanted it to be a yes.
54
Mary’s Diary
February 2002
The car smelt of disinfectant. Apparently the reason it had taken some time to give us a ‘yes’ or a ‘no’ was that the doctors had been arguing about the viability. It had been one of the toughest decisions they’d had to make but one of the team wasn’t confident about the quality of the lungs. Finally they came to the conclusion it wasn’t safe.
Nicholas and I didn’t talk about it on the way home. What was there to say? We were both too numb to speak. Besides, we didn’t want to wake Alice up.
It was a nightmare. There is no other word for it.
A nightmare that never ends . . .
Over the next few days I woke up with that sinking feeling in my heart, the night of the false alarm still so raw. I wondered how Nicholas could possibly concentrate in court.
But he has to. I almost envied him the distraction.
The strangeness is life goes on and in the next breath we are watching Alice on live television being interviewed by Richard and Judy, the most powerful couple in the media, on their chat show. Only days after the false alarm Alice had called up the producer, explaining she was on a triple transplant list but wanted to be a singer. There was no way she was going to let him go until he had given her a slot on their show. If anything, the alarm has made her even more aware of time being against her, and I don’t blame her for feeling she has nothing to lose anymore. Nicholas took the afternoon off work to watch the interview with me. Jake and Lucy came over, too. Lucy has quite a bump now. Anyway, Alice looked so pretty and vivacious. How could viewers possibly imagine that only days ago she was sitting on a hospital bed waiting for a transplant operation? Instead they see this beautiful bubbly positive woman with seemingly stacks of energy, wanting to pursue a music career.
A Song for Tomorrow Page 22
