Designer Genes Read online

  “Do you have an infection that makes you have a bad cough?” Her eyes were wide with wonder. “Will the doctor have to hide the cold thing and listen with his earphones while you do big breathing?”

  I thought of our trips to the doctor where she’d learned how to be a big girl when the doctor used his stethoscope.

  “Not quite, Tia. I’m not sick. I’m going to make sure that the doctors take away all the bad stuff before it has a chance to make me sick. Do you think you can understand that?”

  She nodded her head, but her eyes were darting back and forth. It was about as clear as mud for her tiny mind. She was too young to absorb the facts and yet there was no doubt she had enough insight to know that there was something wrong.

  It was the first time I realised that my heart could simultaneously break and continue to beat at the same time.

  She trusted me to be all right and I didn’t know if I would be. I didn’t know what they were going to find. Nobody did. I had an ‘altered gene’ that had spelled a death sentence for two members of my family. A cancer gene. Would I ever be coming home to my babies again?

  Susie

  I could think of nothing but Emily that day. It took a gigantic effort to concentrate on work and actually listen to my clients. That was quite a problem: I’m a psychotherapist so listening is my job.

  I was wishing with all my heart that I could be with her. Emily had been my best friend forever. She was much more than that, she was like my sister. I couldn’t really remember my life before I knew her. But, despite all that, it was Robbie’s place to be by her side today, not mine. That’s marriage, isn’t it?

  I imagined them driving to the hospital. My bet was that he would be silent and she would be playing our special game in her head.

  I should explain. As children, Emily and I invented this game and called it “Recipes Rule”. We’d sort out our problems by putting them in a recipe and cooking them up, or boiling them down, depending on the mood. I suppose, when we started the game, we were using the cooking metaphor as a tool for venting our feelings. It was our own little way of telling each other how we felt and quelling our worries in the process. Years later, at university, I realised that we had unwittingly invented a very effective therapeutic tool.

  The game was created when Emily wasn’t allowed to wear a really gaudy Communion dress. After she’d told me all about it, she sat there brooding and then said she’d thought of a great way to punish her mean mummy. With her bottom lip protruding, she proclaimed: “Mean Mummy Mousse: Take one Mean Mummy. Steal her favourite shoes. Soak them in muddy water with worms and rotten leaves. Serve them to Mean Mummy covered in slugs!”

  Clapping and thrilled, I’d finished with: “Watch as Mean Mummy says she’s very sorry and won’t be nasty ever again!”

  We’d jumped up and down cheering, feeling that Mean Mummy had been sorted out. Even though Emily still had to wear the boring minimalist Communion dress, the slug-covered shoes had been a balm to soothe us when we felt we’d been wronged and in our heads we were the winners.

  After that, “Recipes Rule” became our lifeline. We sautéed strict teachers, boiled bad boyfriends, massacred our poor mothers on many occasions. Suffice it to say, we sorted the world by cooking it and serving it up in a way that we felt was justified.

  When Emily discovered her boyfriend was cheating on her at the age of fifteen, she’d cried with embarrassment and hurt pride until I came up with the Cheating Git Casserole.

  “Take one boy called David. Add a stunning and clever girl called Emily. Remove David’s brain. Make him think he needs to hang around with Sylvia the slut. Chop off David’s bits. Put them in a big heavy pot with carrots, onions and gravy. Stew and make him eat said bits. Serve with a toss of the head and a look that tells him you didn’t really like him anyway!”

  “Thanks, Suze. I still feel like my heart is breaking, but I have to say I’ll never be able to look at David again without imagining his bits floating around with chunks of carrot and onion!” Blowing her nose, Emily hugged me gratefully.

  I wondered what recipe my poor brave friend was cooking up today.

  1

  SEVEN MONTHS EARLIER

  Emily

  Ice-lolly Sundae:

  Take two small children, add sunshine, smiles and ice-lollies. Douse with water from garden sprinkler. Add mud. Allow kids to wallow.

  Hose down to remove muck. Dry and dress.

  “Oh my God, that sun is hot. Not that I’m complaining, Emily. There’s nothing like heat to unknot your shoulders, is there? I could do with a bit of relaxation after the week I’ve had with your father.” My mother lay back on her sun-lounger with a big sigh.

  We were in my parents’ back garden letting the balmy sun heat our bones. Robbie and I had awful cheap old loungers in our house, so it was much nicer to visit Mum and Dad. I often came over on summer afternoons – if I went back to work, as I was thinking of doing, I wouldn’t be able to suit myself as much.

  The tweeting birds and smell of flowers would have created a beautiful and idyllic scene if it weren’t for Tia and Louis chasing each other across the lawn naked, while yelling abuse and trying to maim each other.

  “I’ve never heard anything like your father,” Mum went on. “All I want to do is have the living room painted, and he’s been backwards and forwards to the hardware store so many times buying bloody colour-match pots. He still hasn’t decided what colour he wants. At this stage I don’t care if it’s luminous pink with orange spots, just as long as he stops telling me about it.” Mum smiled in spite of her irritation, closing her eyes and drinking in the sun. “How is Robbie behaving? I hope he’s not as annoying as his father-in-law.”

  “Robbie’s fine. You know him. Once everything is ticking along and he’s able to put each thing in its correct box, he’s happy. He started going on about the kids’ toy room again yesterday. He seems to think that they don’t need any toys or DVDs or anything that makes a mess and takes up space. Let him try staying at home for the entire summer with no distractions! I’d say the toy-store vans would be delivering twice a day!”

  Robbie and I argued constantly about toys. He thought a hoop and a stick between them was sufficient. I knew the children adored a variety of playthings. It was one of those subjects we should have avoided discussing. We’d never agree.

  The roars from the other side of the garden got louder.

  “Stop trying to kill each other, kids!” I screamed. “Can’t you pretend you like each other for once?”

  Of course they completely ignored me and continued to charge about like deranged, shrunken warriors.

  “I’ll turn on the sprinkler for them – it’ll water the parched grass and keep them entertained at the same time,” Mum suggested, peeling herself off her comfortable lounger. Within seconds, the fighting turned to delighted squeals and giggles. Tia and Louis leapt in and out of the chilly drops like little garden nymphs, twisting and cavorting, completely taken with their game.

  “Was that the doorbell, Mum?”

  “Didn’t hear!” she yelled, over the noise of the children.

  I got up lazily and meandered towards the house, avoiding being soaked by my two little demons. I had a nice slick of sweat across my face, which I tried to mop up with my T-shirt as I opened the door.

  “Only me,” said my Aunt Ellie. “You’re looking ravishing, Emily.” My aunt gave me a quick peck on the cheek as she floated past, looking elegant in a swirl of linen and silk, making me feel like a slob in my sweat-soaked outfit.

  I cleaned up okay but just then my blonde hair was stuck to my head and I had no make-up on, a mistake when you’ve got fair lashes. Right at that second I was sporting the boiled ham look. My fair skin didn’t exactly take the sun well. I never went brown – I just looked like I’d been fried.

  “You can’t come to this house smelling of cologne and wearing pretty floaty clothes,” I said to Ellie. “You have to sit in greying underwear and smell like a
rugby player’s jock-strap to sit with us.”

  “Give me five minutes sitting in your mum’s sun trap and I’ll suit the description perfectly.”

  Outside, Ellie sat on one of the plastic garden chairs near the sun-loungers.

  “Hi, Lucy! Hi, Monster Munches!”

  “Hi, Ellie! Are you going to take off your clothes and jump in the water with us?” Louis begged hopefully.

  Ellie was their all-time favourite auntie. She was always in a good mood and although she’d long since hit what she called “the dreaded forties” she could bounce on a trampoline as high as any six-year-old and play hide and seek for up to an hour, no problem.

  “Not today, little man, but I’ll watch you, if that’s okay.” She narrowly avoided being hugged by two dripping wet children, producing a bag with ice-lollies as a distraction just in time.

  “Would anyone like a cold drink?” Mum asked, wriggling her toes into her flip-flops.

  “I’d actually love a coffee, mad as it sounds,” said Ellie. “I need a caffeine boost.”

  “I’ll have a water, please, Mum.”

  By the time the ice-lollies had been opened and the children had fought over them, Mum was back with the coffee.

  Then, as we were sipping our drinks, Ellie took a deep breath and said: “Girls, we need to talk. I have some news.” She was looking from one of us to the other, and she wasn’t smiling.

  The children were darting around the garden, playing Star Wars by pretending their ice-lollies were light sabres.

  Mum and I looked at each other, and I felt my heart sink. Ellie was one of life’s happy, light-hearted people. Nothing got her down. Except one thing. I realised there could only be one type of news which could make Ellie look like this. Cancer.

  She’d had breast cancer ten years before. Five of the girls from Mum’s family had already had breast cancer, Ellie being one of them. Three survived. But Meg died at thirty-eight and Joanne died at forty-one. They left three devastated children in their wake.

  “Just tell me you don’t have . . . it again,” Mum implored.

  She could barely say the word “cancer”. Being first-born in a family of seven girls, Mum was like everybody’s big sister. Ellie was the youngest and, due to the fifteen-year age gap, looked up to my mother as her mini-mum.

  “It’s okay, Lucy,” Ellie soothed her older sister, “but you’re on the right track.”

  Mum looked instantly devastated. “Oh, God.” The colour drained from her face.

  Fear gripped me. I saw my children flash past, spitting sound effects from their tiny, pursed lips, as they swatted at an imaginary being with their ice-lollies. I remembered my aunts finding out they had cancer and I remembered how much pain and suffering they went through before they died.

  To see someone you love being taken over by pain and suffering was awful. I was very close to Ellie and the thought of her going through that again was shocking.

  “I had a test done recently, ”Ellie said. “And it was positive. I am a carrier of a mutation of a gene called BRCA1.”

  We looked at her blankly.

  “What does that mean?” Mum asked.

  The two of us stared at Ellie – the kids, the heat and the sunny day forgotten.

  “It basically means that I have an altered gene which makes me very likely to develop breast and ovarian cancer,” she explained slowly.

  “But you’ve already had breast cancer,” I mumbled. My brain and mouth weren’t connecting properly.

  Ellie’s shoulders slumped. “Well, that’s why the hospital approached me. They know that we have a history of breast and ovarian cancer in the family, so they asked me if I would take this test.” She paused, took a deep breath and went on. “The gene is called BRCAl – which stands for Breast Cancer 1. They’re trying to identify certain mutations of it in as many people as possible. Mutations of the gene are particularly prevalent in people of Ashkenazi Jewish descent, which as we know our grandmother was. I have inherited one of those mutations. If a woman carries the altered gene she has an eighty per cent chance of developing breast cancer.”

  We sat in a stunned silence.

  “She also has a fifty per cent chance of developing ovarian cancer.”

  Mum’s hands shot to her face.

  The sounds of my children’s happy voices faded in and out of my head. It was like having a bullet of ice shot through my chest. This had serious consequences for Mum and me. And Tia. Innocent and tiny, bounding around in the sunshine, could she be in serious danger in years to come?

  As Ellie began to talk again, I managed to zone back in and listen to her.

  “Nobody can say our family isn’t aware of what cancer can do. Obviously, the more they can discover about this mutation, the closer they come to finding a cure. So I agreed to be tested.”

  “What did you have to do?” Mum’s voice was faint.

  “It was a simple blood test. They sent the sample to a lab in England and they searched for this specific mutation, which was present in all of us so far. The reason I’m telling you is that you may want to be tested yourselves.”

  Ellie dropped her gaze to the ground. I thought she might be about to cry.

  “I’m so sorry to be the bearer of such bad tidings, but I had to tell you both.”

  At that moment I felt for her. It wasn’t an easy bomb to drop.

  “What about Heidi and Zara?” Mum wanted to know about her two other sisters, who’d both previously had breast cancer. “You said the mutation was present in ‘all of us so far’. You mean they had the test too?”

  Ellie nodded. “They’ve been tested and unfortunately they’re both positive. I volunteered to come and deliver the bad news. But we didn’t want to tell you we were doing it, not until we were sure . . .”

  “Poor you, Ellie! Talk about being given a ticking parcel and told to run with it!” Mum’s mothering instinct kicked in as she leaned forward and clasped Ellie’s hand.

  I loved my mum so much at that moment: even in the face of devastating news, she was thinking about someone else.

  But Ellie was still concentrating on getting her message across as clearly as she could.

  “So, Lucy, if you are a carrier, and only if you are, Emily also has a strong chance of testing positive. But you may not be, Lucy. And if you don’t carry it, Emily cannot carry it either.”

  “Then Tia wouldn’t have it,” I whispered. It was a glimmer of hope for my baby.

  Ellie squeezed my hand. “I’m sorry to have to tell you all this and ruin a lovely sunny day for you.” She drank her coffee and waited for the news to sink in.

  We remained quiet, deep in thought.

  Ellie spoke again. “Two months ago, when I decided to go along and take the test, I assumed I wouldn’t be a carrier – it’s a bit like taking a pregnancy test and assuming you won’t be pregnant. That kind of thing happens to other people, doesn’t it? So I went back to the genetics lab last Friday, fully expecting to be told I was safe. But they told me I tested positive. I know I’ve had breast cancer already, but I really thought my test wouldn’t come back positive.”

  Mum touched my hand, the concern for me written all over her face. I followed her gaze as she watched Tia stamping in the soggy, muddy patch they’d created with the garden hose.

  “How are you coping with it, Ellie?” I asked.

  “Well, I was really shocked when they told me, but when I gathered my thoughts and sat down and rationalised it all, it made perfect sense,” she said matter of factly.

  “Oh Jesus!” Mum said. She never cursed normally. Nothing was normal about today.

  I just stared at Ellie. I wasn’t sure what to think or say.

  Ellie pressed on. “You need to decide whether or not you want to be tested. If you decide not, you should at least put yourself on a screening programme. The genetics lab sent me a letter following my diagnosis. It’s kind of technical but it explains the whole gene thing very well. I’ve photocopied it and I’ll leav
e it with you – one for each of you. I think it gives a –”

  “Look at me, Mummy, I’m a chocolate girl!” Tia appeared beside me spattered from head to toe in thick, oozy mud.

  “Oh Tia, what have you done to yourself?” I stood up and tried to grab her but she was too quick for me.

  Squealing with delight, she dashed across the lawn towards the dancing sprinkler.

  “Okay then, wash all that mud off with the clean water and stop turning the grass into a mud bath,” I called, on automatic-mummy-pilot.

  Tia had gone behind a tree, curling her arms and tucking her hands into her armpits, shouting, “Ooh, ooh, ooh, I’m a mucky monkey!”

  Louis, similarly muddy, joined her and they began to leap about communicating to each other in monkey language.

  “Leave them to it, Emily, at least they’re happy!” Mum shouted over to me. “We’ll hose them down before you have to put them in the car.”

  Why am I so anally retentive, I wondered silently? Here I am in utter shock, being told life-altering news, and all I’m worried about is my children being covered in mud. Who cares? I could imagine what my friend Susie the psychotherapist would say about my reaction – something to do with focussing on unimportant issues in order to avoid the horrible ones.

  Ellie sat with us for about half an hour after that but we couldn’t talk as the children kept running over and back to us. They didn’t need to hear any of this.

  My head was spinning by the time we waved Ellie off. The bright sun and the heat were suddenly too much for me. I woodenly grabbed the children, removed as much muck as I could with the sprinkler, dried them and dressed them.

  “I don’t want to go home – it’s too hot to sit in the car!” Tia whined.

  “We need to go now. Say goodbye to Oma now, like a good girl.” The children had always called my mum “Oma”, the German for grandmother. I’d had an Oma growing up, as my maternal grandmother is Austrian, and when they were born Mum hadn’t felt like a Nana or a Grandma. So she’d opted to uphold tradition and become an Oma too.