Lauren Segal - Cancer: A love story

For the last 30 years, I have written many stories always other peoples stories. This is my profession. I have told these stories first in my capacity as a historian and researcher, then as a filmmaker, and later as a museum curator.

Living as I do in South Africa, my stories have almost always zoomed in on the often traumatic experiences of life under apartheid. These stories have taken me into worlds very far from my own; as far as the oldest prison in Joburg where thousands of my fellow countrymen disappeared for weeks on end their only crime being the colour of their skin and being caught in the wrong place at the wrong time.

In each of these worlds, I am struck by the immense power of storytelling and its potential for healing. I witness the relief etched on peoples faces when they feel listened to for the first time.

Now it is my turn to interview myself. The ritual of keeping a daily journal of my cancer journey becomes my lifeline. My life coach encourages me to be discliplined in this practice: Writing amplifies the experience. She is right. My feelings often become apparent through the writing. Much is unanticipated. The words draw the map of my inner world in ways I could not have imagined.

Amidst all the fear and confusion of cancer treatment, making order on a page is the one thing I can control, and the one place where I can find solace. It contains my fears. The words begin to tumble onto the page with feverish intent. Writing becomes my salvation. The upward curves and downward slopes of the characters give shape to my borderless world. They help me to live life in the shadow of death. With them, I carve out a version of my existence. For once, I am telling my own story.

I start to stitch together my journal entries. Whole scenes begin to emerge organically on the page. My vantage point as storyteller is of a terrified person learning to harness her power and inner resources while drawing on the love and resources of those around her to buttress her own.

The pleasures are unforeseen. I am surprised by the fluid nature of the process, and I was amazed at my drive to complete this work. I am also amazed at how liberating it is to tell my own story free from the constraints of contested histories or clients needs as is so often my experience. I am the judge of my own memories, the conductor of my emotional cacophony.

Is there place in the world for another cancer narrative, I keep wondering. There are so many. I listen to tens of them when I am filled with the terror and white-hot rage that accompanies cancer. I gain much succour from others unflinching descriptions of how they confronted this god-awful disease.

Then I think about a kaleidoscope, my favourite childhood toy. I remember marvelling at how the tiny fragments of colour would remain the same at the end of the tube but that, with each turn of the wheel, these same fragments created a wondrous new pattern, beautiful to behold.

I think of cancer stories in much the same way. The components of the story are similar, but each person turns the wheel in a different way and designs an entirely new narrative. This book is the turn of the wheel of my kaleidoscope. It has been unexpected, painful and at times exhilarating to watch the patterns and colours emerge.

My hope is that this story will help people to understand that while there might be universal points in the journey for all cancer patients, the experience of the journey is an utterly private one. There are experiences that some sail through, while others are felled. There are words that are a salve to some that bring rage to others.

I am all too aware of the privileges that have underpinned my particular journey. I was freed of many of the burdens that so many other cancer patients in South Africa are forced to endure. I am entirely grateful for having my path smoothed in every possible way, and do not underestimate how this has given shape to my tale. I also realise that it is my privilege that has given me the space to write my story.