A Hole in My Genes: A Memoir

By Jodie Fleming

Dr Jodie Fleming is a Clinical & Health Psychologist practicing in South West Victoria. Jodie once specialised in the field of psycho-oncology - the human side of cancer.
In 2010 at the age of thirty-seven, she receives the terrifying news that she has two primary breast cancers. This becomes a frightening opportunity to practice what she preaches.

The doctor becomes the patient.

Having cared for her husband with testicular cancer eight years earlier and dedicating her career to helping others with cancer, Jodie understands the role of caregiver both on a personal and professional level. The role of patient, however is another matter. The diagnosis comes exactly one month after the end of her marriage. What ensues is the epitome of complicated grief and a foray into the world of cancer from the other side of the desk.

Necessity fills her life with surgeries, chemotherapy, and genetic counselling. She relocates interstate to her parents’ home in country Victoria for a healthy dose of family dysfunction. Genetic testing and a prophylactic hysterectomy adds salt to the open wound of infertility and viciously rubs it in. With no family history of breast cancer, Jodie's family, including her younger sister Kim, confronts the news that Jodie carries the BRCA1 genetic mutation.

Forced to draw upon the psychological strategies she’d previously taught her clients, Jodie discovers that many are ineffective. She revisits many of her sessions with clients, reflecting on the invaluable life lessons each one offers: Sarah, the thirty-six-year-old mother diagnosed with terminal breast cancer who urges Jodie to work with her family to prepare them for her death; Alex, a sixteen-year-old dying from brain cancer who teaches Jodie the meaning of happiness; and Michael, the man who should be retiring to enjoy his dream home with his family but instead finds himself in the terminal stages of prostate cancer.

Jodie also meets Sam, a thirty-nine-year-old mother of three, diagnosed with breast cancer at the same time. Together, they forge a bond based on their common diagnoses and similar treatment pathway, sharing information and supporting one another until Sam loses her battle.

Recovered, and approaching her fortieth birthday, Jodie ventures again into the world of love daring to face the challenges that her new post-cancer body brings. She braves the realm of online dating to meet Rick and his children who, for a short time, provide Jodie with the hope that she has not missed out on having the family she covets.

Starting from scratch, Jodie develops her own toolkit to conquer the psychological minefield of cancer, grief and loss, infertility and breast reconstruction. Interspersed throughout are letters she writes to her grandmother . . . her Nan.

Jodie learns more from her own journey than she ever does, or could, from her studies.

This is that journey from a terrifying diagnosis to a cancer free future.

• Language: English
• Publisher: Tellwell Talent
• Release date: Feb 4, 2019
• ISBN: 9781922261083

Jodie Fleming

Jodie Fleming is a native Victorian and passionate devotee of experiential living. She has danced salsa in Cuba and had many a siesta in España. She works as a clinical and health psychologist in a variety of settings and dedicates her free time to swimming in the ocean, following her nephews around to their various sporting endeavours, running with her beloved staffy Mortimer and watching foreign films.Always on the lookout for ways to work more effectively, Jodie's first international wellness retreat, Conscious Living, in Bali, May 2019, was developed in conjunction with Mindful Tribes. ‘A Hole in My Genes’ is her first book.Jodie Fleming is a Doctor of Clinical and Health Psychology and a Member of the Australian Psychological Society.

Book preview

INTRODUCTION

I stand at the back screen-door of my childhood home and remember playing rounders with my little sister Kim – she with her dark brown eyes and olive skin, me with my spindly arms and legs, and bright blue eyes. We would yell out ‘koo-ee’ as loud as we could – an invitation to our neighbour to come over and join us. We’d kick the ball, run and giggle in the fresh cut grass, hoping Mum would forget to call us in for our bath.

‘Don’t you kids get too dirty!’ Mum would shout.

I look over to the above ground swimming pool, round and inviting, where I spent many days and nights swimming with my best friend and neighbour, Sharynn, on our blow-up ponies, my sister and I fighting over the orange one. ‘Here comes the whale!’ Dad would yell as he did a huge belly flop, splashing us with water and emptying the pool. Behind it sits the old timber table and chairs that my Dad paints every year. Along the back fence is the well-loved brick barbeque that he used to cook on, standing there with a beer in one hand, entertaining the street with his dad jokes at our regular neighbourhood get-togethers.

‘Dad, can I cook my special eggs for everyone?’

‘Of course you can, Hen.’

Our street used to be filled with so many young families like the Noonans with their perfectly manicured lawn, and the Morrows who had a tribe of kids and reindeer footprints in their garden at Christmas. So many friends to explore the world with. As I scan the yard that formed the backdrop to my early life, I find the overgrown grass plant with the long leaves that cut our hands if we touched them the wrong way. I remember standing in front of it in my pink and white diamond bathing suit when I was four years old, having a photo taken. We would pick the purple flowers from the hibiscus tree making an impressive bunch to take to the nursing home when the school choir went to sing to the residents. Nana had a hibiscus too, but hers was pink.

My eyes rest on our bright tree-frog green bench swing. I remember swinging on it while my baby sister lay on her crocheted rug under the umbrella. The spring sun reflected off the white blanket making her seem angelic. I didn’t like sharing my parents with this new baby.

‘When are you taking her back to the hospital?’

Luckily for me, she grew into my partner in crime, my personal chef, my therapist and my best friend, as we grew up through relationships, children, and now, this.

I remember the plans Kim and I made to ‘run away’ when we were little. We’d each bring a blanket in a small brown suitcase that we’d carry one block to the playground.

‘You might need these too.’ Mum would say as she handed us some fruit.

When it started to get cold or dark, we’d return to our safe, warm, loving home.

Our bicycles were always parked in the garage – our independ­ence on two wheels. We were blessed to grow up at a time when it was safe to ride all over town and only come home when it got dark and the first street lights came on. ‘Go and have an adventure,’ our parents would tell us, ‘but be careful and look after each other.’ We rode to the beach, to our friends’ houses and more often than not, to see the most important person in my life, my grandmother, Nan. Nan made everything better – a sore tummy, a broken heart – all soothed by the taste of hot Milo and vegemite on toast. I’d spend hours sitting at the foot of her chair as she watched sport on TV. The loyalty and love I felt for her, second to none. I had the fortune of having Nan in my life until I was thirty-four.

My smile fades. I open my eyes and I’m all grown up. There are lines on my face. They used to be laugh lines, but lately they come from frowning and wondering what has happened to my life. Now the thing I’d most like to be able to run away from, breast cancer, has brought me right back to the same house. Looking for safety. Seeking love and warmth.

I adjust the headscarf on my bald head and shiver. I can’t seem to get warm despite the layers of clothes. I let Remi, my thirteen-year-old Staffordshire terrier, inside. He’s barely left my side since I’ve been home. My skin is pale, almost grey, and my once petite frame has been replaced by a swollen face and body due to the drugs I must take. I’m tired even though I spend most of my day sleeping. Hunger taunts me, competing with constant nausea. I can’t eat because my mouth is full of ulcers and yeast. I am alone. Mum and Dad no longer know what to say. I miss my husband.

Still, somehow, I smile. I can’t wait for summer and the scent of fresh cut grass.

CHAPTER ONE

The diagnosis

‘You know the more you keep trying to trick me into talking to you, the more I’m going to beat you?’ My eight-year-old patient smiled. I had an awesome day at work playing the X-Box with him, trying to distract him from the horror of his pending treatment.

‘Are you scared of dying, Jodie?’ The question didn’t surprise me as the topic of death frequently arose in my consulting room.

‘Hmmm, I’m not too sure, and aren’t I supposed to be the one asking the questions?’ I laughed. ‘What about you, dude? Are you scared of dying?’

‘Nope’, came the reply. ‘You know why?’

‘No. Tell me.’

‘Because I’m not going to die for a really, really, really long time. I’ve just got too much to do before then’, and my wise old man of eight years of age spent the rest of the hour listing the many, varied pleasures that awaited him in his life after treatment. I held onto his piece of wisdom as it occurred to me that several of my adult patients tended to focus on achieving shorter-term goals, like finishing their house renovations or ensuring the financial security of their families. This little boy had goals spanning an entire lifetime … ‘When I’m 80 I’m still going to go and watch the World Cup Soccer, no matter where it’s played in the whole wide world …’

The Children’s Cancer hospital where I worked as a psychologist never had any phone reception. It drove me particularly crazy that Wednesday before Easter, as I’d been waiting for a call back from my doctor. He’d promised to rush the results through from the biopsy on my breast lump before the holiday.

I expected my results to be unremarkable. I’d had breast lumps before that turned out to be nothing, just cysts or fatty tissue. I called for them because that’s what you do when you have a test. Just a formality. Ticking a box. Still, I wanted the reassuring call. I’d bought a plane ticket to visit my family for the long weekend. When I booked it, life had been different.

At the end of the day, I left the hospital and crossed the busy road in front of the ambulance station. I headed to my car – I had another appointment in my private practice in thirty minutes. That’s when my phone beeped back into range. I had a message. I called the message bank, ready to tick off the to-do item as I walked. Nothing could have prepared me for the voicemail.

‘Hi Jodie, it’s Dr Bullock. I have scheduled an appointment for you to come in tomorrow morning to talk about your results. See you at 11 a.m.’

I kept walking towards my car but I felt like I was sinking in quicksand, my eyes and mouth wide open, my heart feeling as if it was in a vice. What did it mean? Did I have cancer? Fucking fuck. I have cancer. I’m going to die. Who the frick leaves a message like that? I called the clinic. Answering machine. Oh God. Please don’t be on holidays already. Do not shit me. Instinctively, I fingered my long brown curls resting on my chest and shoulders. My head felt heavy as my peripheral vision blurred, leaving only a small tunnel of focus. I needed answers. Frantic, I called my husband. I wanted to throw up.

FUCK.

‘Baby, I can’t breathe. I have cancer. There’s a message on my phone!’

‘What? What did they say?’ Dave joined me at the panic station.

‘They’re not fucking answering the phone. Dr Bullock said I have to go in at 11 a.m. tomorrow to discuss my results and I can’t get a hold of them, it goes straight to the answering machine! What the hell? I’m supposed to fly home tomorrow … Where are they? Oh my God, what are we going to do?’

‘You just try to stay calm. I’ll call the clinic and I’ll call you back. Okay?’ Dave took charge of the situation as I reeled in the vastness of the hospital car park. It had only been eight years earlier when Dave received his own cancer diagnosis from the same doctor.

They’d be expecting me at private practice. Dave said he would take care of it. He’ll take care of it. I have cancer. I have breast cancer. But breast cancer doesn’t happen to young women. My doctor told me that. Liar. No family history. I’m too young. Breast cancer doesn’t happen to me. I’m supposed to help other people with cancer. Who’s going to help me?

I called Rachel, the receptionist, at my private practice. She knew I’d had the scans.

‘Hi Rach, it’s me.’ I started crying. ‘I can’t come to work. I think I have cancer.’

‘Oh honey!’ Her voice sounded chirpy despite my news, ‘Don’t you worry about a thing. You take care of you and I’ll deal with everything else. We’re thinking of you.’

What else could she say? Relief. One less thing to worry about. As if I could sit with someone else and listen to their problems right now.

Nan, it’s amazing to me as I think about those moments that felt like hours, how my body replays the physical symptoms perfectly, as if it’s happening again.

As I sat in the car park waiting for Dave to call, I thought about Sarah, Alex and another young woman I’d met on my psycho-oncology placement five years earlier. People who’d invited me into the end of their lives. People who’d taught me about living.

Dave’s phone call snapped me back to the present. ‘Okay, Dr Bullock is with another patient but he’s going to call you as soon as he’s finished. They promised.’

I’d always taken pride in my ability to empathise with my patients, no matter what their situation. But in that moment, I realised that I was only now coming close to understanding the fear felt by every person I’d ever worked with who’d received the news I was about to. I’m going to die.

My chest strangled my breath as I wondered who could love me if I didn’t have any breasts. What if the cancer has spread everywhere? I trembled. My head spun as nausea took over. I couldn’t comprehend anything.

On autopilot, I drove home in peak hour traffic. I sat motionless on the couch while Dave paced up and down waiting for that phone call. At 5.35 p.m. it came.

‘It’s Dr Bullock. You have a ductal carcinoma.’ He sounded distant and clinical.

‘Is that …?’

‘Yes, that’s cancer. It means the cancer is in the milk duct. They’re very common. Go on your holiday. We’ll schedule you to see a surgeon when you get back. A few days won’t make a difference.’

I didn’t believe him.

‘How do you know that? How do you know it’s not everywhere throughout my body?’

‘It doesn’t work that way’, Dr Bullock explained. ‘These things move slowly.’

One hand shielded my eyes. I couldn’t take in any more information, not even seeing what was in front of me. Dave maintained a safe distance, standing in the kitchen, but as I hung up the phone, he joined me in silence on the couch.

‘We’ll get through this together’, he offered. Promised. Vowed. He held my hand so tightly I thought it might break. Like my heart.

Dave hugged me and we cried. He brought me a cup of tea and some tissues. I felt closer to him than ever when he picked up the phone to call my parents.

‘Hi Elaine, listen, the test results weren’t what we’d hoped for.’

Numb and detached, I mumbled to myself, ‘They didn’t even know there was a test.’ I never wanted my parents to worry about me, much less when there was a possibility that I might be sick. With cancer.

That night I lay still, barely breathing, awake, staring into the blackness asking myself how we knew the cancer wasn’t already throughout my entire body. I visualised my athletic body that had never had so much as a broken bone. What if waiting a single day could make all the difference. Was I going to die? Had I somehow done this to myself?

I wondered how many nights I had left in this bed. In this room. This house. This city. How long would I live? Would I be able to see the World Cup at 80? My life wasn’t supposed to be like this. I’d worked so hard for a career in psychology that had only just started. I’d waited so long for my husband, the love of my life. I’d only just thought about becoming a mother. What if I never slept again? Dave lay still but wasn’t snoring so I couldn’t tell if he was sleeping. It always annoyed me that he could fall asleep as soon as his head hit the pillow. However, tonight, part of me wanted him to sleep so that I could stop worrying about keeping him awake.

I gently started to touch the lump in my breast. I wanted it to be my friend. We had to get through this together and I didn’t want it doing anything rash like spreading around my body and killing me. Would Dave be there with me at the end? I’d done everything I was supposed to do. I had the love of my life. I ate well, exercised, never smoked. I dedicated my career to helping other people.

Now I had cancer.

CHAPTER TWO

The prequel

Toward the end of 2002, I moved back home to Warrnambool, a wind-swept beach town in south-west Victoria, after living in Spain for three years. The move meant being closer to my family as well as my dog, Remi, who I’d left with my parents when I moved overseas. He came into my life thirteen years earlier when I lived in Canberra with my then boyfriend. Remi was the light of my life, uncondition­ally loving me through two major break ups. He’d let me cry on him and accidentally wipe my snotty nose on his coat – Remi really was the best boy.

My first Christmas home, I drove my Nana and Uncle Ian over to Adelaide to share the holidays with my Aunty and cousins. I appreciated the seven-hour trip, as I needed a project to distract me from the difficult adjustment to being Australian again.

The Christmas Eve high school reunion carried on without me, but a phone call reminded me that I hadn’t been forgotten.

‘Jodester, it’s Shane. Where are you?’

‘Hey there! I’m in Adelaide with my Nan and won’t be home until Saturday. How long are you home?’

‘Well, we miss you. I’m only here till tomorrow so I guess we won’t see each other this time round.’

‘Are you out? Who’s there? What’s all the gossip?’

‘The usual suspects, plus, you’ll never guess who I was just talking to.’

‘Oh! Who?’ I begged hungry for some news.

‘David Quigley.’ An unfamiliar feeling stirred in my stomach as I wished for a second that I’d stayed home for Christmas.

Dave never came home on Christmas Eve. Or ever, really, as if he’d needed to leave our hometown long behind him. I wondered if something had happened to his parents to make him come home.

‘He was asking about you’, Shane teased.

‘Really? Does he look well? Is he okay? Please tell him I say hi!’

I hung up, smiling and content, feeling connected to my closest friends.

Dear Nan,

I’ll never forget our last trip to Adelaide together. Especially the night you cried out at 2.00 a.m. ‘Maureen, Jode, I think I’m dying!’ My gut told me you weren’t going to leave us then Nan, but it certainly reminded us that time wasn’t on our side. Remember all our conversations about death and dying over the years, Nan? Did you get sick of me asking those kinds of questions?

Like, ‘Nan, do you think you know when you’re going to die? I mean, unless you get hit by a bus or something.’

‘Yes. I think so.’

‘What do you think happens after we die, Nan?’

‘I think we go with the angels to heaven.’

‘Are you scared of dying Nan?’

‘No, I’m not.’

I needed reassurance. If you weren’t scared of dying, then maybe I wouldn’t be as scared of losing you. But it didn’t work.

On Boxing Day that year we lazed around. Nan and Uncle Ian settled on the couch to watch the cricket, while Aunty Maureen and I flicked through some magazines. Early afternoon I went to the bedroom to read a text message.

‘Hello stranger, this is a blast from the past. I got your number from Shane the other night. I’m sitting at the Test Match but couldn’t leave the state without contacting you. It’s Dave Quigley.’

I smiled a Cheshire cat grin that wouldn’t leave my face for several years.

‘Hello! What a beautiful surprise! I have the biggest grin on my face. How are you?’ I was always too honest.

The texts flew back and forth all afternoon until we agreed to catch up back in Warrnambool on Saturday night. He changed his plans so he could see me for the first time in thirteen years. I felt excited too.

Oh Nan, I’m still riddled with guilt that I didn’t follow through with the promise I made to you as a child, to look after you when you got old. I used to love hearing you tell your friends, ‘This is my granddaughter Jodie, Elaine’s girl. She’s going to look after me when I get old.’ And then you’d laugh your beautiful warm giggle. Man, I miss hearing you laugh Nan. My heart still breaks when I think about that accident you had when you’d just gotten out of hospital in Adelaide. You were so ashamed that you couldn’t make it to the bathroom in time, you tried to pay me for helping you. You didn’t need to pay me, Nan. I love you. I wanted to help you. Ageing is such a cruel beast. I hated watching it rob you of your dignity.

CHAPTER THREE

Enter stage left – the love of my life

On the trip home from Adelaide, my mind filled with memories and flashbacks to a time when my life included Dave. As teenagers, he’d been my nemesis – my boyfriend’s best friend. We’d compete for his time and attention and as a result, ended up spending a lot of time together. Ours was a love/hate relationship. Love, because we had so much fun together; hate, because I was jealous of the time he took up in my boyfriend’s life.

At the bar that night, my heart pounded when I found his familiar face in the crowd. There he stood, so handsome with life etched stunningly on his tanned face, which accentuated his light green eyes. His tight denim shirt told me that he still had an incredible athletic build. He’d barely changed except the person wrapping his arms around me in such a warm hug was stronger, more confident somehow. I wouldn’t go as far as calling it love at first or second sight, but something happened, that’s for sure.

After an incredible night of talking, dancing, and talking some more, the seven-hour drive caught up with me. I went home at midnight and suggested that both Dave and his friend Jolyon catch a taxi to my house to save them a larger taxi fare to an outer suburb where Dave’s parents lived. I shouldn’t have been surprised when Dave arrived, alone, around 1 a.m. I answered the door in a singlet and pyjama bottoms with messy bed hair. We sat up talking until five o’clock in the morning, about our lives, the missing years, the loves lost.

‘There’s so much to catch up on’, I said. ‘Tell me something else.’

‘Well, here’s something for you’, Dave offered, ‘I was diagnosed with testicular cancer in November.’

So that’s why he’d come home.

‘What? Are you okay?’

My mouth opened but no more words came out. Cancer? Another unfamiliar feeling appeared in my stomach.

‘Yeah, I’d noticed that my nipples had become really sensitive. Like nothing could touch them, not even my clothes. So, I went to the doctor and he found out I had cancer.’ Dave explained all of this with a level of calm I wouldn’t have imagined possible knowing you had cancer.

‘Wow, that’s freaky. What do sensitive nipples have to do with testicular cancer?’

‘It’s a hormone compensation thing. Anyway, it all progressed really quickly and before I knew it, I found myself in hospital having my left nut removed.’ As he spoke, Dave stood up, lifted his shirt and showed me the red scar across his lower abdomen.

‘Oh, it looks so sore.’ I winced.

‘It’s okay, really. It’s so much better than it was.’ He reassured me. ‘So, tell me more about Spain.’

I hadn’t seen this person in years so my physical reaction to his news surprised me. How could someone my age have cancer? Weren’t we too young? It felt a little too close for comfort.

‘I know!’ Dave said in such a way that I jumped. ‘Let’s spoon.’ I laughed out loud. Was that his idea of a smooth move?

The sun had started to rise on another spectacular summer day. I enjoyed the closeness of his body against mine and sighed with contentment.

‘I can’t believe I’m spooning Jodie Fleming’, he whispered and I grinned. I couldn’t believe I was here with my old friend either.

Despite catching him looking at me for a little too long and being overly interested in every word I said, I remained cautious. I tried to stay in the moment and enjoy it for what it was, not for what it might become. My caution seemed to provide him with a challenge. He returned for dinner with Jolyon that night and again the following day to cook me scrambled eggs for breakfast.

Dave spent quite a lot of time with me over those few days. Could that be a spark I saw behind those ridiculously long eyelashes? No. Surely, he must give all the girls that look. That look would without a doubt provide him with a guarantee of success. But then again, what if having cancer had changed him? He seemed so present and sincere when we were together. His insight and self-awareness impressed and surprised me all at once. Could it be so unreasonable to

Reviews for A Hole in My Genes

[rosecityreader · Rating: 5 out of 5 stars]

Psychologist Jodie Fleming specialized in "psycho-oncology" counseling cancer patients before her own breast cancer diagnosis. Her new memoir, A Hole in My Genes, tells how Jodie went from doctor to patient and worked through grief and loss, surgeries, and infertility to cancer survival. Her professional background gave her a well-stocked toolkit of cognitive and behavioral strategies to draw from. Her book describes both how to use tools such as accessing social supports, using mindful grounding techniques, and managing catastrophic worries, and how effective those tools were for her in her own treatment. It is also intensely personal, as she addresses topics as intimate as her own struggle with infertility, sexual dysfunction, and menopause. A Hole in My Genes is a worthwhile book for anyone going through a difficult time. It speaks of hope, resilience, and overcoming adversity in our imperfect lives.