A Song for Tomorrow

by Alice Peterson

  ‘Believe it or not, yes,’ Professor Taylor replies. ‘You have a healthy heart that could be used for a separate heart transplant.’

  I like that idea. It’s comforting knowing I could help someone else in the process.

  ‘What happens after the transplant?’ Dad asks.

  ‘Well, results range from a prolonged and unpleasant hospital stay with eventual failure to a virtually normal life with none of the previous CF demands.’ Professor Taylor goes on to explain that I’d have to continue taking my digestive enzymes and vitamins, I’d still have CF in other parts of my body, but other than that, ‘you would be breathing with new lungs.’

  I glance at Tom, knowing he’s imagining what I am seeing: a life free from the constrictions of physio and medication.

  My father asks, ‘And the success rate?’

  Everyone is deadly quiet as we wait for the answer. Anything that sounds too good to be true always comes with a catch, and in my case the catch is possibly death.

  Professor Taylor takes his time to reply. ‘I can’t give you a precise answer, I’m afraid, since so few triple transplants have been done that success rates are no more than guesses. Triple transplants are naturally more of a challenge as lung transplant surgery is still new and surgeons are testing the boundaries. But there have been successful outcomes after major surgery of this kind.’ He looks at me again. ‘I can’t pretend it’s going to be easy, but you know that. We are looking for three perfect organs and it is a high-risk operation. I could be sending you off on a journey to an operating theatre for you not to come out again.’

  Everyone remains quiet.

  ‘But where there’s life there’s hope. A transplant could save you, Alice. It could be a door opening to a fantastic new future.’

  When Professor Taylor leaves the room I catch the look of hope in everyone’s eyes. It might be high risk, but if things carry on like this nothing else can save me.

  I am going on the national waiting list for a heart, lung and liver transplant and I’ve never felt more ready to fight for my life.

  When everyone has left, Tom and I stay up talking until late, huddled in bed together. ‘I wouldn’t see that misty-eyed dragon face each morning,’ Tom teases, referring to me on my nebs machine.

  Imagine not having to do physio for two to three hours a day. I’d have time. Freedom.

  ‘We could swim and snorkel,’ I say.

  ‘Without the jellyfish.’

  ‘We could travel more,’ I suggest, knowing Tom itches to get out of London.

  I could sing without feeling breathless.

  Walk without feeling tired.

  Tom and I could have a future.

  My parents wouldn’t have to worry so much.

  They’d have their freedom back, too.

  If I lived for longer, I could live to see Jake being a dad.

  ‘If my work deal goes through,’ Tom continues, ‘we could think about buying our own place together.’

  I turn to him. ‘I’d love that.’

  ‘Out of London, somewhere close to the coast.’

  ‘Or in London, close to my sunbed place.’

  ‘I want our children to live by the sea, Alice.’

  When he says ‘children’ my heart stops.

  It’s the first time we’ve been bold enough to mention the idea and just from the way he’s looking at me, I can see that he’s thought about it a lot in the past too. ‘This could be a chance for us,’ Tom says, hope at last in his eyes, ‘don’t you think?’

  I nod.

  ‘We could have a family,’ he imagines. ‘A mini you.’

  ‘And a mini Tom.’ I’d love a boy and a girl.

  Already we can feel the burden lifting. It may be too soon to talk like this, but I don’t care. I don’t think Tom cares either. We deserve a chance of happiness and at last we have something to hold on to.

  ‘I’m going to live,’ I promise him.

  ‘You’d better.’

  I have so much to live for.

  45

  Mary’s Diary

  November 2001

  Alice and I have just spent two days on the assessment ward at Harefield, in Middlesex, having millions of tests. They even had to make sure her teeth were healthy so that there were no potential sources of infection. The vampires took so much blood, too. How they can find a vein that still works is a miracle.

  I was with Alice when she had the procedure beautifully explained by a nurse. She told us how they match up the blood type, height and weight of the donor to someone on a list. Even though the surgery could take anything between fifteen and twenty-four hours, she was so gentle and sensitive that she made it sound less daunting. Alice is permanently on oxygen during the night now and occasionally during the day too. Professor Taylor told us that her lungs are so damaged and full of phlegm that her body simply can’t process enough oxygen into her bloodstream. When she’s at home she has to use a large machine called a concentrator, but when she goes out she has to take with her a pre-filled cylinder of oxygen; it looks like a silver and dark green tank. It’s awkward for her to carry but it’s the only option since they don’t have portable concentrators light or powerful enough to use. The oxygen travels into her lungs via this clear tube that rests between her nostrils. She laughs, calls it her nasal specs. It was horrifying to see her on the oxygen at first, but if it quietly helps her breathe throughout the night, keeping her alive, then it’s my best friend.

  Alice has also been given a special bleeper, like a doctor’s pager, which she has to take with her everywhere. If she gets the call and her bleeper goes off, we have to be ready to drive her straight to the hospital. It does put her life on hold, it means she can’t ever travel far, but at the same time Alice doesn’t want to be anywhere but home. She spends virtually all her time now in bed, either chatting on her mobile or she’s playing her keyboard and writing. If anything she wants a record deal even more now. I want it so much for her too but Jake, Nicholas and I fear it might not happen, that it could break her heart.

  Nicholas and I try to carry on our lives as normally as possible, but it’s hard. I bumped into a friend in Sainsbury’s the other day and when she asked me how things were I didn’t know where to begin without bursting into tears. How could I admit that often I glance at people wondering if their lungs or their liver could work for Alice? Are they the same blood type? The other weekend Nicholas and I went to a wedding. I found myself telling the stranger sitting next to me that Alice had just had her chest cavity size measured to see how big or small her new lungs needed to be. It was like having a fitting for a ball gown or something. I noticed Nicholas’s eyes filling with tears. He remains strong on the outside, but of course he feels it just as deeply as me.

  Alice has gone off to the cinema to meet Jake, reluctantly taking her oxygen tank with her. Tom teases her, saying, ‘there are three of us in this relationship’.

  I have packed a hospital bag. I found Alice some new pyjamas with owls on them. When Alice first came home we couldn’t stop looking at her bleeper. We thought it could go off at any second. We have to believe we will get that call soon.

  So many times she has been close to death but survived.

  Alice is like a cat with nine lives.

  46

  Alice

  As I queue to collect the film tickets a greasy-haired teenager carrying a large tub of popcorn turns round and stares at me, as if he’s just been given a tip from his friend that there’s a weird woman standing behind them. I smile at him.

  I need oxygen. I have tubes in my nose. Other than that I’m just the same as you.

  As I continue waiting I think back to the argument I’d had with Professor Taylor that the actual process of carrying this cylinder or tank around surely negated the benefit it might give me. But he wasn’t having any of it. He said that if I had to walk a long distance it might also be a wise idea to invest in a wheelchair.

  ‘You have got to be kidding,’ Susie had s
aid, when we met up last week, me longing to fill my anti support group in about being on the transplant list.

  ‘But if it gets you around,’ Milly had argued, diplomatic as ever. ‘Come on you two, what’s more important? Swallowing our pride and having a life, or sitting inside feeling miserable and sorry for ourselves?’

  ‘Well I can’t push you,’ Susie had said, pausing for breath. ‘We’d be like the blind leading the blind.’

  ‘You and Bond could sit on my lap and Milly could push the three of us,’ I’d suggested, Susie and I erupting into giggles, waiting for Milly to tell us off. Sometimes all we can do is joke.

  The thing is that CF is largely invisible until you are on an oxygen tank or you’re being pushed around in a wheelchair. A wheelchair is an official stamp of being disabled, isn’t it?

  I feel for my bleeper in my coat pocket. Just touching it reassures me.

  I think about Susie again. Milly and I definitely thought she’d weakened over the past few months, so I built myself up to ask her if she’d ever consider going on a transplant list. The look she gave me was her answer. ‘I’m much better since leaving . . .’ She couldn’t bring herself to say his name. ‘I’m sleeping at night and catching up with my course work. I’m tons better,’ she’d said, as if trying to convince herself as much as Milly and me.

  Susie is still living with her dad. She says it’s fine so long as she keeps out of evil stepmother’s way, who claims Susie’s ‘condition’ is mind over matter and threatens daily to walk out if her father won’t put Bond into a kennels.

  ‘Sorry I’m late.’ Jake rushes over to me, disrupting my thoughts, just as I reach the head of the queue, the man behind the booth handing me our tickets.

  As we walk slowly up the stairs I am treated to a few more stares from a red-haired woman wearing a black beret, with her boyfriend or husband.

  Cooey!

  ‘They’re looking at me,’ I whisper.

  ‘No they’re not.’

  ‘Yes they are.’

  ‘They’re looking at me, Leech. I’m much better looking.’

  I pull a face. We make it to our seats just as the trailers end. ‘How are you feeling about the gig?’ Jake asks. It’s in two days.

  ‘Great.’ Nervous but excited. ‘Lucy’s coming, isn’t she?’

  ‘You bet. Nothing would stop her.’

  I know my brother too well. He’s hiding something. ‘Jake?’

  ‘She’s . . .’ He runs a hand through his hair. ‘She’s pregnant.’

  He doesn’t need to say it as if it’s not allowed. As if his life can’t go on just because mine is on hold . . . It does hurt to think that I might never be a mother, but I want nothing more than for Jake and Lucy to be parents, especially after their miscarriage.

  ‘We wanted to keep it quiet until we got past the twelve-week scan.’

  ‘Come here, I’m so happy for you.’ As we hug, my silly old oxygen tank gets in the way.

  ‘Thank you,’ he says. ‘You’re the first to know.’

  As we watch our film, I think back to Tom and I talking about our dream house by the sea and our two children. One of these days I will be a mum, I promise myself. Tom and I will be parents too.

  Our time will come.

  47

  The day of my gig has finally arrived. It’s late afternoon and I’m in a cab, heading to the venue. Trisha hadn’t wanted me to arrive too early. ‘You’ve got to conserve your energy for singing, one hundred per cent.’ I’ve been on my oxygen machine most of today. I pray that it sees me through tonight. Sometimes I feel like a car filling up its tank; I need enough fuel to survive the journey. My mobile rings. It’s Susie. From the tone of her voice I know something is wrong.

  ‘Ethan knows about tonight,’ she says.

  ‘How?’

  ‘Stepmum. She told him I was going. I can’t come, Alice. . .’

  ‘No, you’re one of the most important people to me . . .’

  ‘But, Alice, he could turn up drunk, abusive, this is your night—’

  ‘You have to be there.’

  ‘I can’t risk it, I’d never forgive myself if he ruined—’

  ‘He won’t.’ I won’t let him. Susie and I have spent hours talking about tonight and how much she’s looking forward to hearing me perform for the first time. ‘It’s tickets only,’ I remind her, ‘we’ll have someone minding the door. If Ethan dares to show his face, we’ll deal with him. You don’t need to be scared.’ I wait, hoping she’ll change her mind. ‘Please come, Susie.’

  The gig is in the basement of the pub. Two of the backing musicians are doing sound checks with Pete, the stage littered with music stands and instruments. I feel another wave of excitement when I see the stool and microphone centre stage. The whole place feels so private and intimate. Tonight all my close friends and family will be here. Including Susie. I shall be able to see their faces when I sing.

  When Trisha shows me the flyers on the tables, my name written in bold across them, it gives me a taste of fame. But I want more.

  My mobile rings. I freeze. It’s a call from the hospital. From Harefield . . . I stare at it. I feel for my bleeper in my handbag.

  It can’t be . . . can it?

  Not tonight.

  But then again . . .

  My heart thumps as I say hello, aware that Trisha and Pete are watching me.

  ‘Alice, this isn’t the call,’ the nurse says immediately, before I’m overwhelmed with disappointment followed by immense relief. ‘The team wanted to wish you good luck for tonight.’

  It’s close to seven o’clock and the room is filling up, candles lit on each individual table.

  Half an hour to go before I am up on that stage singing . . .

  As I hug and kiss everyone on the cheek I’m constantly keeping an eye out for Susie. Milly had called me earlier to say they’re coming together. Where are my parents? Last night I’d told Dad he mustn’t talk too much and that I’d never forgive him if he spoke to Robbie Williams.

  ‘I wouldn’t recognise him anyway,’ Dad had replied. ‘While you’re at it, any tips on what I should wear?’

  ‘Something that makes you blend in, look as if you’re not there.’

  ‘I’ll wear my court gown and wig and stand right at the front, swaying from side to side.’

  When they do arrive, I introduce them to Pete and Trisha. I know Mum has always been curious as to what I get up to in his studio every week.

  ‘We work exceptionally hard,’ Pete jokes. ‘We never gossip or laugh.’

  ‘You look a million dollars,’ Dad says to me. I’m wearing a white top under a red leather jacket, with a pair of new jeans.

  ‘I told you to keep quiet!’

  ‘You see. This is what I have to put up with,’ my father tells Pete.

  Jake and Lucy arrive and head to their reserved table near the front. ‘I love being pregnant,’ Lucy whispers to me, before demanding that Jake fetch her a soft drink.

  ‘You can be a semi invalid like me,’ I suggest. ‘Get him to massage your feet too.’

  ‘And bring me a cup of tea in bed.’

  ‘And breakfast, milk it,’ I say, both of us laughing just as Rita arrives in a purple dress and sparkling silver earrings in the shape of Christmas trees. It’s lovely to see her out of uniform, no needle in sight. She approaches me with a glass of wine. ‘Got to get into the party spirit,’ she says before adding, ‘I hope you’ve rested today,’ unable entirely to escape from nursing mode. For a moment I wish Professor Taylor were here. I’d discussed it with Mum, Dad and Jake, and reluctantly we came to the conclusion that he could feel uncomfortable. Would I be crossing a line? Professor Taylor often tells me to call him by his first name too, Roderick, but I can’t do that. Imagine me saying, ‘Hey, Roddy!’ However close we are, he is, and always will be to me, Professor Taylor, and I have a sneaking suspicion that that’s the way he likes it too.

  As everyone begins to sit down at their tables, at last I see
Susie at the top of the stairs, red-faced and holding on to Milly’s arm as if her life depended on it. I rush over to them. ‘I’m out of . . . puff,’ she says, as we guide her further inside. ‘He’s not here . . . is . . .’

  ‘Don’t worry about Ethan,’ I say gently, Milly pulling out a chair so she can sit down. ‘I’ve told everyone to watch carefully and I’ve also told the staff not to let anyone in who doesn’t have a ticket, OK?’

  Susie nods, still recovering her breath.

  ‘We got the tube here,’ Milly explains when she notices my concern at how puffed out she is.

  ‘Those blooming stairs . . .’ Susie finally musters. ‘They finished me off.’

  I’m touched she has made this much effort to be here, especially with Ethan’s threats. I scan the room for Tom. I want to tell him to keep a watch at the door, too. Where is he? He can’t be late.

  ‘Good luck,’ I hear Cat say. I turn to see her in a stylish black dress and knee-high boots. I hug her tightly. ‘Remember all those times we sang songs in your bedroom,’ she says, ‘you using your nebuliser as a microphone?’ I nod, seeing us as children, dressed up in Mum’s heels, our hair tied back in scrunchies, Kylie Minogue songs blasting from my stereo. ‘Now look at you,’ Cat says. ‘I’m so proud.’

  We hug again. ‘Thank you, Cat,’ I tell her. ‘I wouldn’t be here without you.’

  ‘Yes you would. Any sign of Robbie?’

  ‘He probably won’t come,’ I say, protecting us from the disappointment. ‘Where’s Tom?’ The room is now packed, everyone here except for the one person . . . ‘He’s so useless, Cat.’ He needs to wear a watch that is set at least an hour ahead.

  ‘Everyone’s ready, sweetie,’ Trisha mouths to me from the stage, gesturing to the music guys on the keyboard and guitar. She’s wearing a dark jacket with a striking gold necklace. I turn to Cat. ‘Where is—’

  ‘He’ll be here,’ she says just as Tom rushes in with George and Tanya, his coat and scarf hung over his arm, bicycle clips still around his trousers.

  Trisha calls me over again, before noticing who has arrived. ‘Quick,’ she says.