A Tale in the Telling

“I have cancer.”

“I had cancer.”

“I lost the love of my life to cancer.”

These short sentences could each be the “once upon a time” opener of countless unforgettable stories; stories with narratives as different as there are individual story-tellers and as compelling as each life lived. While the plots, settings, characters and endings are unique, the impulse to share our stories is rooted in the same basic urge.

When our stories arise from real-life experiences they help us process that which might otherwise confuse or frighten us. Stories can help us circumscribe life-changing events like cancer. They help us make sense of the world, build empathy, tie us together and commemorate that which has been lost. They may appear in the form of a journal, poetry, film, cartoon, blog, song, novel or theatre.

Stories about cancer – whether told by someone who has lived through it, provided care to a cancer patient or lost a loved one to the disease – can be inspiring, sad, thought-provoking and funny, sometimes within the same paragraph.

Candace Weimer knows power the of story-telling first-hand. She had the rug yanked from under her when she was 38 years old. A single mother, fitness instructor and communications expert, Weimer had always been a vibrant, high-energy woman. She was the one her family turned to when they needed a boost. She was always the optimist, the motivator.

Weimer knew something was wrong when she noticed her strong legs getting scrawny, bags under her eyes, a bloated belly and sallow skin. She also began having such intense fatigue she could barely keep her eyes open through the afternoon. Weimer was diagnosed with myelofibrosis, a bone and blood cancer related to leukemia. Doctors told her she could expect to live another two years. Her son was 14 years old.

Of fear, denial and uncertainty, it was the uncertainty that dominated Weimer’s emotions at that time. In her search for literature about the illness, she found plenty of medical information and books about theories behind cancer, but not much that was personal; nothing she could really relate to.

“I wanted something inspirational. Something that would let me know it was going to be OK, whatever happened. Something that wasn’t heavy. I needed to know what to expect.” When she couldn’t find anything to identify with, give her some hope and lift her spirits in an honest, perhaps even humourous way, Weimer started writing.

Journaling.

Doodling.

Recording.

She let the tears fall as words, turned her pain into jokes and released the stories from the constraints of her confused mind, battered body and shining heart.

“At first, journaling was a way of keeping all the information straight,” says Weimer. It soon became a place for her to vent her emotions. “I was a single mom.

I couldn’t unload on my son, but there were things I needed to get out.”

Weimer endured a bone marrow transplant (courtesy of her brother Dennis’s donation), seemingly endless complications including infection, two knee operations, a hip replacement, internal surgery and two eye surgeries. The cards were stacked against her. There were weeks when she was too sick to write. There were days when it was “a real pain in the butt.” And there were days when writing was the only thing she felt able to do.

Weimer’s 117-page book When The World Dropped In On Me: A personal and unusual guide to help cancer patients and their caregivers survive cancer (candaceweimer.ca, 2011, $15.95) is based on entries in her journal and features photos, hand-drawn cartoons, personal reactions and reflections. It takes the reader through diagnosis, treatment, set-backs and celebratory milestones.

There is an acknowledgment of pain and fear, with humour and levity to make it uplifting. Weimer jokes about looking like a hairless cat, realizing who her real friends are, having to eat healthy food and how her social life has been “seriously hampered” since being struck with cancer.

“If you can find something to laugh about, it takes you out of the pain,” says Weimer. “Out of the fear. It takes you out of the real, not-so-pleasant adventure for a little while.”

Dr. Shawn Steggles agrees that reading, hearing, telling stories and even laughing about cancer experiences can be emotionally healing. Dr. Steggles is director of psychosocial oncology and spiritual resources at the Cross Cancer Institute in Edmonton. He is also a clinical professor in the deptartment of oncology at the University of Alberta.

“There is a small percentage of people who just do not want to tell their story. They want to be private. There has to be respect for that,” Steggles says. “But in my experience, the vast majority of people want to be able to tell the story. It’s in our nature.” He says sharing, whether oral, written, dramatic or artistic, is a major coping strategy to get through hard times. “When people share their stories, they feel better, at least temporarily.”

Dr. Steggles’s interest in the psychosocial impact of cancer has a personal connection: he underwent cancer treatment himself in 1983. At the time, there was little in the way of psychosocial support for cancer patients and their families, and he was motivated to do what he could to change that. Since then, he has developed psychosocial oncology programs in Ontario, Ireland and took the lead on an existing program in Edmonton.

“I’ve seen a great change in the 28 years I’ve been involved. There’s certainly more acceptance of sharing. People are less stigmatized. There’s more willingness to talk about it. People used to just refer to cancer as ‘The Big C’ in hushed tones.”

Dr. Steggles says one reason for the change in attitude and the willingness to open up is that people are simply living longer with cancer and after cancer. “Forty years ago, there just weren’t long-term survivors. With the advent of chemotherapy in the 70s and 80s, we now have stories of people living with cancer. Many forms of cancer are now talked about as being a ‘chronic illness.’ That’s a remarkable change. People are around to say, ‘I’m dealing with my cancer experience.’”

When Darren Neuberger was diagnosed with acute lymphocytic leukemia, he thought he was “a goner.”

“You hear the words ‘You have cancer,’ and you automatically think you’re dead.

I was like, ‘I’m 34 and this is it.’” He felt alone, confused and afraid. “It scared the crap out of me.”

Eight years later and this energetic writer, story-teller, cancer-awareness promoter, empowerment coach, mentor and Internet radio-show host is anything but gone. He has been in remission since 2003 and shares his message of inspiration, survival and optimism in every way he can.

During cancer treatment, Neuberger (now an events specialist with the Alberta Cancer Foundation) was given Lance Armstrong’s book It’s Not About the Bike. He found inspiration in the story of someone else close to his age who went through cancer and came out the other side. “I thought how great it would be to make a book to give others inspiration and hope.”

Neuberger solicited first-person stories of cancer experiences. “I received 150 emails in the first month,” he says. The resulting 210-page compilation is Let’s Talk! About It: Inspiring stories from young adult cancer survivors (Authority Publishing, 2010, $24.95), an anthology of 40 stories by people who were diagnosed with cancer between the ages of 15 and 45. He says that writing his own personal story for the collection was “the best therapy ever.” He re-wrote his piece “at least 65 times.” Each re-write was painful but necessary, healing and, eventually, uplifting.

It became obvious to Neuberger that there was a deep need for people to feel they aren’t alone in their cancer journey. “People don’t share their stories enough. You had chemo, radiation. You’ve walked the cancer-care gauntlet. I want people to hear good news stories.”

Today he hosts an Internet radio show on Blogtalk Radio called Let’s Talk About It Radio Show with Darren Neuberger. The program airs live every Tuesday evening at 6:30 p.m. Mountain Time.
“The radio show is just another forum for people to tell their stories. After going through cancer, I want to leave a footprint in this world in some capacity. My biggest message is: You have to be the CEO of your own life. Your body is always talking to you. Listen to it.”

Of course, stories about cancer can be very difficult to hear – and to tell. Lethbridge writer, teacher and musician Allan Wilson’s teenaged son Joshua was diagnosed with cancer in spring, 1998. After surgery, chemotherapy and a recurrance, he died in January, 2000. Writing gave Wilson a way to express his anguish, to record the lessons he learned through grief, and to share Joshua’s courage and wisdom.

“I started to keep a journal,” said Wilson. “When he was first diagnosed, it hits you like a hammer. I pretty much had to write. Just to organize my thinking, help me face the feelings. I found that in the morning, when Josh was sleeping, I would write about what happened the previous day. It gave me something to do, something to focus on when he was sleeping, which was a lot. When he was awake, we wanted to spend as much time as possible with him.”

Wilson communicated with concerned family and friends through his writing. (These were pre-blogging times.) “I found it easier to send out weekly instalments of my journal, through the mail. Then I didn’t have to spend time on the phone with people, well-wishers, who wanted to know how he was doing.” In doing so, Wilson began to realize the journal’s significance.
“Living with someone who is dying is very difficult, as you can imagine. This became a really important document,” he says. “I’m so happy it’s there. It has facts, conversations, details, dialogue.”

Wilson called the 110,000-word journal Walking Upright Through Fire. He is still in the process of finding a publisher for the entire manuscript, but he has shared different forms of it. An essay inspired by the journal called “The Continent of Cancer” was published in the United Church Observer and The Canadian Medical Association Journal. An edited version called “Joshua’s Gifts” appeared in Readers Digest. He wrote a 120-page book for teens entitled Standards of Excellence: For students of life, (Blue Grama Publications, 2005), a motivational/inspirational book for teenagers, using the lessons of Joshua’s short life as a guide.

Last year, Wilson adapted the journal into a play for stage that has been performed across Canada. He says it has been incredibly moving to see an actor portray his son, reading the words that Joshua once spoke. In a way, Wilson says he felt his son’s spirit was present in the theatre for each performance.

By telling the story of Josh’s strength through the ordeal of cancer, Wilson hopes to inspire others to not take life for granted. To treat their bodies with respect. To treat each other with love. In his essay “One Day I Will Lie Down Beside You,” published in an anthology called Nobody’s Father (TouchWood Editions, 2009) Wilson describes, in painful detail, his son’s third-last breath. And his second-last breath. And his last breath. And about what happened after that. How he and his wife mourned – together and individually – and how they are now able to find some peace, some joy, and some moments of pleasure, while still holding their son’s memory close.

The essay closes with powerful words from father to son: “Just as you bravely lived 22 months with a deadly disease, I will try to turn this into a meaningful experience. And, one day, I will lie down beside you.”