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A Hole in My Genes
Published in Australia
Non-Fiction - Memoir, Health and Medical

Print: 978-1-922261-23-6
Smashwords: 978-1-922261-08-3

Date of Publication: 05 Feb 2019
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A Hole in My Genes

Dr Jodie Fleming

Published by Moshpit Publishing

Find out more about Dr Jodie Fleming: Author's website | Facebook | Twitter

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Synopsis

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.

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 10 Excerpt - You've Gotta Have Friends - pages 47 - 49

The Easter I returned to Warrnambool with all my news, I visited three of the most important people in my life. A vital part of my job was encouraging people to develop and call upon their support systems in times of need – sharing the load. My training and own research had taught me that quality social support can be the single most effective coping mechanism in life and so, I began to walk the walk. Telling my friends, I had breast cancer felt different to telling my family. As if in some way there was less seriousness attached to it – less gravity. I guess there was a degree of separation that would lessen the impact of the loss. If it came to that.



 



Brett answered the door of his parents’ house with a broad grin, framed by his deep smile lines. He wore a black, long-sleeved running top and cargo pants. With his olive skin, balding salt and peppered hair and luminescent grey-green eyes, he looked the picture of health.



He has always been super intelligent. In our final year of high school, he achieved the highest marks and went on to become a nuclear radiation technician. When that didn’t satisfy him, Brett went back to university and became a pharmacist. He'd worked at our state’s main cancer hospital, Peter MacCallum Cancer Centre.



‘Hey there’, he said as he embraced me with a genuine hug and kiss hello.



‘Hey, how are you? Love the hat.’ Some people are hat people and Brett is one of them. I followed him into his parents’ kitchen, a place I knew well. I’d been visiting since I was twelve; when Brett and I first met in high school. Robyn and Ian, Brett’s parents, sat at the breakfast bar, strategically placed to capture the sun, reading newspapers and drinking coffee. I wondered if I should tell them all together or wait to tell my best friend by himself.



‘Hi Jodie. Welcome home. How is everything?’



‘Oh, you know...’ No, they didn’t know. ‘Just a quick visit for Easter. How are you guys? I love what you’ve done with the place.’ I felt eager to divert the attention, convinced they’d see straight through me and know something was wrong. ‘Brett are you ready to go?’



‘Yep. I’m famished.’ Brett gave us our exit and we continued our chatter in the car. ‘Little Lion Man’ by Mumford and Sons played as we headed to the beach. Always drawn to the beach. On the long road that led from the shop-lined city centre, before we met the line of Norfolk Pine trees so iconic of our hometown, it happened.



‘So, what’s going on? What’s news?’ Brett asked. Not realising the Pandora’s Box he had opened. My hand brushed his leg as I changed gears.



‘Well, a lot really. I’m not exactly sure what to tell you first. The part about Dave and I separating or the bit about having breast cancer.’ I saw his stunning eyes open wide, eyebrows raised.



‘Well fuck me. That is a lot.’ We both laughed at the understatement and the calm way we both delivered our lines.  





Chapter 30 - To Breast, Or Not To Breast

By early August 2010 I found myself five months into my cancer journey. No longer a deer in headlights, still unable to mentally move beyond the day I was in – not able to visualise a future longer than twenty-four hours. For at least three of those months, I'd been on the other side of my surgeon's one-sided conversation about planning reconstructive breast surgery.



 



            August 5th, 2010.



            Oh Nan, I’m so confused! There’s all this talk about reconstructive surgery after my mastectomies. Here I am in the middle of chemo, feeling like death every other week and trying to prepare mentally for my breasts to be cut off. I have this visual image of me like E.T. when they find him after he’s been in the woods all night – on the medical table – just before he dies. He is skinny, grey, wrinkled, and broken. That’s how I feel.



 



            The conversation between my mind and my battle-weary body went something like this:



Body: ‘If I just take these real slow and shallow breaths and not move any other muscle, I'll be able to make it through the day. And if I can keep my breasts, I'll still be the real me and someone will be able to love me one day.’



Mind: ‘No, come on! If you stop moving, I'll have too much time to think up horrible torturous thoughts to torment you with. Go to work for God's sake. Occupy both of us!’



Body: ‘But I can't do this anymore. I'm scared that if I do the wrong thing, I'll make the cancer cells grow. If I have to have another anaesthetic and surgery, I'm sure I won't wake up. I can't live without my breasts. I won't be a woman anymore if I lose them completely.’



Mind: ‘You're fine. You can do EVERYTHING you used to do. You should be able to do more than this. You've only had four anaesthetics this year. That's nothing. Come on, let's go!’



            Twenty-four-seven those conversations went on. Ceaseless. What I should be doing, what I could no longer do. How I look, looked, would look. Why didn't anyone love me? What if it came back? The cancer. Would I be able to look at myself without breasts? Too much.



            Mr Gan had been persistent in his approach, ‘You’re so young and you are single. Of course you will have a reconstruction. You will want breasts for your next relationship.’



            Next relationship? Yet to grieve the loss of my marriage, I couldn't even consider the ‘next relationship’. As my vision stretched only as far as the day in front of me, my focus remained purely on survival. That was enough. I didn't need new fantastic boobs to survive. I just needed the old ones gone.



            Mr Gan didn't give in to my fear. Instead, he gave me a choice between two breast surgeons who were able to perform the mastectomies and immediate reconstructions. Both options meant travelling away from my hometown. He wore me down and I eventually agreed to a consultation. After all, I'd always prided myself on making informed choices. It couldn’t hurt to have a chat. Besides, I'd researched Mr Kollias, my new surgeon and he'd published a lot of papers on psycho-oncology. Maybe he wouldn't be so bad after all.



            Fiona hadn't had a reconstruction at that point. One night, having dinner with Fi and Tony in their cosy, dimly lit dining room, we spoke about my options.



            ‘Wow Fi, I feel so overwhelmed by all of this. I've been on Google and the things I found about breast reconstruction are insane!’



            ‘I know Jode. That's why I took myself off the waiting list. I just don't feel ready to handle the surgery or the recovery. My surgeon has recommended the TRAM Flap method for me.’



            ‘Which one is that?’



            ‘That's the one where they cut a line from hip to hip and take a chunk of stomach muscle and fat to create the new breast. You get a tummy tuck at the same time, so that's a bonus!’ Fi laughed, ‘But they recommend a few months for recovery. Can you even imagine all of the scarring and how painful that'd be?’



            There are several invasive ways for a surgeon to recreate breasts after a mastectomy. Most of them either repulsed or scared the life out of me and I knew it would be a long time, if ever, that I would be physically and mentally prepared to choose any of them. Like the TRAM Flap surgery, another option is to use back fat and the latissimus dorsi muscle from the back to form a new shelf for the breast made from fat and muscle. More cuts. More pain. More healing.



            As I headed interstate to Adelaide for my consultation with Mr Kollias, the only option I was prepared to consider was implant surgery. This would mean using my existing scars, and silicone implants to form the breasts, with a much speedier recovery. My mind was made up.



           



            Dear Nan,



            The most horrendous thing happened at the airport. The evil woman at the x-ray machine insisted I remove my hat to put through the machine. Can you even believe that? I was speechless. I couldn’t even think. I just did what she said, feeling so very exposed and vulnerable.



 



            Upon meeting Mr Kollias, I felt a little overwhelmed by his good looks and charm and underwhelmed by his height. Dressed in a light brown suit, with longish brown hair, he reminded me of a well-dressed Fonzie. I lay on his examination couch with a rainbow coloured gown opened at the front. Still not accustomed to showing my breasts, I awkwardly left the gown open when I wasn't supposed to and closed when they wanted it open.



            Mr Kollias palpated around the circumference of both breasts with his fingertips. He moved gently with great respect and then had me sit up so that he could look at their symmetry. After examining me, he agreed that my only option was for the insertion of silicone-gel implants after tissue expanders had been used to stretch my muscles and skin. The tissue expanders would be placed within the same operation as the mastectomies and would be filled with saline every two weeks to increase their size until I was satisfied. This would be followed-up down the track with one more surgery to replace the tissue expanders with the implants, as well as create the nipples.



            ‘Your case is unfortunate, as you would require enough tissue for two breasts and there isn't enough on your stomach or back to suffice.’



            A compliment?



            ‘And unfortunately, your existing breast tissue is not a good enough quality to conserve, so I will be removing your whole breasts.’



            Translation: My breasts were too saggy to be of any use to anyone.



            Not a compliment.



            Suddenly, I had a plan. No need to turn him down outright as Mr Kollias had hit the jackpot presenting me with the only possibility that I could consider at the time. I still had a lot to think about.



            Returning home and to work, thoughts about my ability to handle an additional surgery ran around my mind. One day while sitting at my desk, there was a knock on the door.



            ‘Hello, my name's Sue’, said a smiling brunette, bounding into my office. ‘I heard you'd started working with us and I've been dying to come and meet you’, she continued, closing my office door. There wasn't time to wonder what she was doing when she lifted her shirt, removed her bra and proudly showed me her reconstructed breast. ‘Look at me, I'm eight years down the track and I couldn't be happier and healthier. This will be you in no time!’



            My thoughts were caught between Whoa, that looks completely real and should I be looking at this stranger's boobs? Then I spoke.



            ‘Hello, I'm Jodie. Wow, did you have TRAM flap surgery?’



            ‘Yes, here, look at my scar’, Sue said showing me a thin line that ran across her stomach from one hip to the other. It looked like it would have been incredibly painful at the time. ‘I have to say it was the worst four months of my life as I recovered, but all these years down the track make it a very distant memory and I'm so, so glad I had the reconstruction. I feel normal and doesn't it look great?’



            She was right. Apart from a slight discoloration and the faded scars across the top and bottom, her breasts looked amazing. I had no idea the result could be so realistic looking. I'd just received the push I needed to sign up for my own breast reconstructions.



            After preparing for a life without breasts, planning to rebuild my body in a few short months opened my mind and heart to the possibility that maybe there would be a future longer than twenty-four hours for me. That single decision began to change the way I looked at my cancer and at myself. My liver was healthy, there were no signs the cancer had travelled, and more than one medical professional thought it was worthwhile planning to rebuild my body. I was going to have new boobs, and perky ones at that.



            It turned out that Mr Gan had been right all along.







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