My Butterfly Gland

By Louise Conway

‘My Butterfly Gland’ is the story of Louise, who worked as a qualified social worker for 10 years before experiencing 3 recurrent miscarriages at the age of 30 in Auckland, New Zealand. Then in 2012, she was diagnosed with thyroid cancer.
This is the story of Louise, who did not know how much she wanted to be a mother, until the decision was taken away from her and how 2 years later, she found a lump the size of a golf ball in her neck.
This is Louise's story of heartbreak and loss, of grief and despair but most of all, of hope and of love. It is her fight to not only get what she wants more than anything in the world but to also be alive long enough to enjoy it.
This is her memoir.

“This is an enormously useful account for anyone who has gone through or been affected by either pregnancy loss or cancer. She has been very generous with her details and it is a compelling read, no question.” Dita De Boni

• Language: English
• Publisher: Louise Conway
• Release date: Jan 14, 2016
• ISBN: 9781310334085

Book preview

MY BUTTERFLY GLAND

Copyright © 2016 by Louise Conway

ISBN 978–0–473–35448-0

All rights reserved. No part of this publication may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods, without the prior written permission of the publisher, except in the case of brief quotations embodied in critical reviews and certain other non-commercial uses permitted by copyright law.

Private Distribution

This book is licensed for your personal enjoyment only. This book may not be re-sold or given away to other people. If you would like to share this book with another person, please purchase an additional copy for each recipient. Thank you for respecting the hard work of this author.

The Copy Press, Nelson, New Zealand

www.copypress.co.nz

Printed in New Zealand

ACKNOWLEDGEMENTS

To my husband and my 2 incredibly beautiful and very much adored children. I am grateful for you all every single day.

To my husband – I am lucky in insurmountable measures to be married to you and thank you for being my partner in life, my friend and my confidante. Your unconditional support and ongoing encouragement has allowed me to pursue this path and I am so thankful and grateful to have you walk this journey with me and for us to be able to stand together side by side. I love you.

"Always when we fight, kiss you once or twice and everything's forgotten; I know you hate that. I love your Sunday song, the weeks not yet begun and everything is quiet

and it's always you and me, always and forever." (Wannadies 1994).

To my children - The love I have for you both cannot be expressed in words and yet sometimes because of it, I can hardly breathe. I know you will not understand my love for you until you have your own children and even then, it is hard to believe that you will love your children as much as I love you, or that anyone anywhere could love their children as much as I love the two of you. Thank you for being the most precious things in my life and for completing me entirely.

I did not know I could be this happy, this grateful or this content.

FOREWORD

I began writing about my experiences of recurrent miscarriages and thyroid cancer as a form of therapy for myself in 2015, in order to understand and process what had happened to me and to try to make sense of it all. Prior to this, I had always worked in social care and my qualifications as a social worker with core values such as promote and protect, enable and engage and respect and reflect led me to pursue sharing my story in order to support, inform and empower others.

Woman rarely talk about pregnancy loss, yet 1 in 5 pregnancies will end in a miscarriage. http://kidshealth.org/parent/medical/sexual/miscarriage.html

Mention to a woman that you had a miscarriage and suddenly the door is open to share their own personal experiences of miscarriage. Yet miscarriages are rarely discussed and the feelings of loss and the need to grieve are often misunderstood or worse, ignored or dismissed.

Cancer in general is increasing within our population. Thyroid cancer in particular is on the increase and there is very little published information outside the medical arena, anecdotal or otherwise. The incidence of thyroid cancer has more than doubled since the 1970’s and in the UK in the last 10 years, the incidence rate has increased by 66%. http://www.cancerresearchuk.org/health-professional/thyroid-cancer-statistics#heading-Zero

I have experienced both recurrent miscarriages and thyroid cancer. I had three miscarriages in 2010 and suffered immeasurably, enduring a combination of grief, loss and despair. Having eventually given birth to a perfect baby boy, I was diagnosed with thyroid cancer when my very precious son was only 18 months old. Having achieved my goal of motherhood, I was unsure whether I would be alive long enough to enjoy him and to guide him and although I will never have actual evidence or know for sure, I believe both experiences had a symbiotic relationship. I am convinced that my thyroid cancer caused impairments to my thyroid function resulting in my inability to carry a foetus past the first trimester and there is research to suggest that poor thyroid function may double the risk of miscarriage. (Dr Hugh D Melnick. 2015).

Therefore, for these reasons, I believe I am uniquely qualified to discuss both recurrent miscarriage and thyroid cancer and the story that follows is my honest account of what I experienced.

My Butterfly Gland is my memoir.

CONTENTS

Chapter 1: PROLOGUE

Chapter 2: EMIGRATING

Chapter 3: MARK

Chapter 4: MISCARRIAGES

Chapter 5: MAX

Chapter 6: THYROID CANCER

Chapter 7: PRE SURGERY

Chapter 8: POST SURGERY

Chapter 9: RADIO ACTIVE IODINE

Chapter 10: CANCER FREE

Chapter 11: EPILOGUE

MY BUTTERFLY GLAND

Chapter 1

PROLOGUE

It was August 5th and my elder sister’s birthday, a date I usually remember as celebratory; a day to laugh and to have fun, to give gifts and to rejoice and most of all, a day to be happy. Yet this August 5th was different.

Very different.

This August 5th, I was at Auckland’s North Shore Hospital Emergency Department being asked to sit down by a very gentle and kind Emergency Department doctor. There were no other rooms available so I was taken into a ward that was no longer used. It was huge and empty and far too light and bright for the space. The many fluorescent light tubes above us hummed softly like bees and I became aware of my heart beating repeatedly, methodically and far too quickly in my chest.

The doctor and I sat opposite each other in one corner of this huge, empty, bright space close to the hospital’s radiology department, our knee’s almost touching. I was in hospital as a result of discovering a golf ball sized lump the day before, which had appeared suddenly in the back left side of my neck. I had gone to hospital early in the morning to discover its cause and had waited for hours before finally being given an ultrasound scan in the afternoon.

The ultrasound was carried out in a small, dark and almost silent room with the white glow from the computer screen reflecting off the radiologist’s face. Whilst feeling very calm and listening to her breathing alongside the sounds of the machinery taking images of my lump, it occurred to me for the first time that this could be serious. This was reinforced by the lack of communication, comments or feedback from the radiologist as she worked and also when she brought someone more senior into the room. Concerned and keen to break the silence, I asked what the lump could be, but the more senior radiologist who was now completing the scan answered in a vague and non-committal manner, saying only that something was definitely showing up.

Following this, a CT scan was ordered and suddenly everything seemed to be moving much more quickly. As I put on a hospital gown and several nurses prepared me for the CT scan, I already knew what was wrong with me.

The CT scan confirmed what I already knew, so I was not surprised when the doctor took me into one corner of this huge, empty, bright unused ward. He sat me down and then placed his chair in front of mine before inhaling and exhaling deeply. He then said, You have probably realised that this is more serious than we first thought.

I have cancer I said as I looked into his kind but sad eyes. He slowly nodded and held my gaze.

Am I going to die?

Chapter 2

EMIGRATING

I had chosen to face this hospital visit alone, whilst leaving my husband and perfect, precious and adored eighteen month old son at home, to save them from a day in hospital.

But we weren’t often apart. We had moved as a couple to New Zealand in 2009, leaving our family, friends and former lives in Hertfordshire, England. We had backpacked around New Zealand for a month in 2003 before we were married and had always discussed moving there permanently. Yet there always seemed to be good reasons to remain where we were when it actually came down to serious consideration.

Firstly, we were both settled in our careers. Secondly, there was always a beloved family member or a close friend of ours having a baby. Thirdly, my husband had an elderly grandmother who was unwell and lived locally to us and finally, my adored father had multiple sclerosis, (MS) and lived in a residential care home. Moving away from him and also from Mark’s grandmother in their last few years of life seemed to be an enormous barrier for us both.

Mark and I were married in 2007 after dating for six years and we already lived together, had a shared mortgage and were very, very happy. He worked for a commercial property company and I worked for the local council as a social worker in a disabled children’s team. We were a happy professional couple enjoying our lives and our family were mostly in close proximity to us. We