Journey to Me

JANE GILLESPIE

journey to me

… a search for meaning after cancer

for Jophesine and Jemima

acknowledgments

Thank you to everyone who has cheered me on in the long, long journey to complete this book and get my story out there. Tina, Suze and David, my writing buddies, have encouraged me for years.

Everyone I have had contact with through the Life Force Cancer Foundation has been supportive of my dream. Thank you all. Your generosity in listening to me and your courage in sharing your own pain, is what helped me through my darkest times.

I am enormously indebted to Aurora Hammond, the wisest, most compassionate teacher anyone could ever have. My time at the College of Holistic Counselling was nothing short of life changing.

South Pacific Private Hospital deserves accolades for the amazing work that they do and my time there affected me profoundly. Sophie, my wonderful therapist ever since, has nurtured and encouraged me.

To my best friend Tina, editor extraordinaire - I couldn’t have finished without you.

And of course, thank you to my mother and children for the love they have shown me always.

‘Twenty years from now you will be more disappointed by the things you didn’t do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade-winds in your sails. Explore. Dream. Discover.’ ~ Mark Twain

contents

Foreword

Before Cancer

Chapter 1 – You’ve Got It Wrong!

Chapter 2 – The Beginning

Chapter 3 – Reality Strikes

Chapter 4 – A ‘Brave Face’

Chapter 5 – Scratching The Surface

Chapter 6 – ‘Joys’ Of Chemo

Chapter 7 – Back In Hospital

Chapter 8 – Where To Now?

Chapter 9 – Uh-Oh!

Chapter 10 – Starting Over Ain’t Easy

Chapter 11 – Is That Light?

Chapter 12 – Freedom To Make More Choices

Chapter 13 – Digging Deep

Chapter 14 – Moving On

Chapter 15 – Sink Or Swim

Chapter 16 – Finding My Life Force

Chapter 17 – Searching For The Seductress Within

Chapter 18 – New Adventures

Chapter 19 – Endings And Beginnings

foreword

It’s amazing that something as destructive and life threatening as having cancer can be the catalyst for exciting and positive personal growth.

I have witnessed the transformation of Jane Gillespie from an unfulfilled single mother in the wastelands of suburbia to a dynamic and empowered woman full of energy and enthusiasm, able to bring hope and strength to others who have endured the desperation and horror of living with cancer.

Her unflappable outlook on life today is truly inspiring, as is the story of her journey. I feel blessed by her presence in my life.

Adam Towers

before cancer

In 1994, I was a single parent of a disabled child, living in Canberra, Australia’s capital city. Katherine, the youngest of our three children, was a few weeks short of her 11th birthday when my husband left me for another woman. My cancer diagnosis came just before Adam’s 26th birthday; Suzie was 23 and Katie 16.

Katie was a very floppy baby from birth and had no sucking reflex, so had to be tube fed for the first five weeks of her life. When we brought her home from hospital, I couldn’t bear the thought of doing this, so she was bottle-fed drop by drop. Feeding would take hours. I used an upholstery needle to make a large enough hole in the teat of her bottle to squeeze the milk out and I had to stroke her throat to try to get her to swallow. Sometimes I resorted to using a teaspoon and dribbled the milk into the corner of her mouth. Katie had no survival instinct at that age and we had to wake her for every feed.

She was diagnosed as having Prader-Willi Syndrome (PWS) when she was a year old. The tragic irony is that between the ages of about three to six, the appetite control centre in the brain of a child with PWS stops functioning. The condition is incurable and if not closely monitored for the rest of their lives, people with the syndrome can literally eat themselves to death.

Because of her extremely low muscle tone, our little girl rolled over, sat up, crawled, talked and walked much later than other babies do. I burst into tears of joy when she took her first steps a few days before her third birthday. It took years of intensive therapy, from the time she was ten days old, to get to this significant moment. She still has some mobility restrictions and is classified as borderline intelligent.

These days, Kate appears to be very high functioning, having good language and reading skills and the ability to follow quite complex instructions. She responds best to routine and as long as things go according to her expectations, she’s fine; but if something goes wrong she can be easily thrown. Once she has an idea in her head, it’s pretty much there for good and it is extremely difficult for her to change her thinking if she’s gone down the wrong track. She can respond to certain incidents like a five year old child.

When Katie was twelve and due to start secondary school, we moved from one side of Canberra to the other. Her father and I had enrolled her in a private school because we felt she would get the best education there at that stage in her life. We needed to live close enough so that she only had to catch one bus to school.

Halfway through her fourth year there, the school told us that they could no longer fulfill Katie’s educational needs and recommended a special education facility. I had always felt dislocated on that side of town and was isolated from most of my friends, so once Kate started in her new school, which was closer to where we used to live, I was happy to move back to our old area. However, I have never been sorry that she had those years at her first high school. I believe it developed her self-confidence and ability to relate well to all people; much better than many other PWS people.

Life had begun to feel that it might be good after all. I was living closer to my friends again and had worked my way through a lot of the grief and feelings of worthlessness after the divorce, and was reasonably content with my single status.

***

Chapter 1

You’ve Got It Wrong!

The news isn’t good, I’m afraid. There’s no easy way to say this. The lump is malignant. You have cancer.

Who would have thought those words would start me on the sometimes desperate, sometimes terrifying, but ultimately joyful quest to discover myself?

It was 21 January 1994, a date that is permanently engraved in my mind. I listened dutifully to the doctor’s explanations as she showed me my X-rays again. I think I nodded in the appropriate places and responded sensibly when she directly questioned me. I might even have asked some questions myself. I don’t really know; it was all so unreal.

My mother was with me and she was in shock too. The doctor wanted to know if anyone could come and collect us because she was worried that neither of us was safe to drive. The receptionist reached my son Adam, who had flown from Sydney that morning to attend an exhibition at the National Gallery and Mum went out to wait for him so she could tell him what was happening. He didn’t know I had even had a mammogram, let alone the challenge I was now facing.

I waited in the doctor’s office and remember staring at her as though she were crazy as she told me it was all right if I wanted to cry, or scream, or throw something. That it would be perfectly reasonable.

What was she on about? Who was she talking about? Certainly not me; I was safely up in the corner of the ceiling looking down on these two women who had nothing whatever to do with me. I also remember being irritated with her for rabbiting on and on about cancer. I didn’t have cancer, so why didn’t she just shut up?

A few minutes later Adam and Mum came into the room. He put his arms around me and cried, so I comforted him and told him I was sure everything would be okay. The doctor said she would phone my GP and he would then arrange other appointments for me. This was a problem, because I had just moved and didn’t really have a GP. I ended up giving her the name of the doctor I used to go to when we lived in the area before.

***

Naturally, the cancer diagnosis turned my whole world upside-down. My previous GP had given me the all clear during an annual medical only a month before, a few days after my fifty-first birthday. This included a routine Pap smear and breast examination. She also gave me a pamphlet about mammography and explained that it was free for all women over fifty.

When the doctor gave me the pamphlet, I was in the process of moving house. In the general upheaval of packing and unpacking, I could so easily have lost the leaflet with the phone number for the Breast Screening Clinic. Fortunately, the way important things often seem to happen in life, I found that piece of paper about three weeks after moving into our new home. I made the decision and booked in for my first ever mammogram.

Many women will have first-hand experience of having a mammogram or at least have