TORONTO - The moment Virginia Yule learned she had breast cancer, two thoughts raced through her head.
First: How will I tell my husband and son, and what will I do about work? Second: Holt's has a good sale on and I look not bad in black, so maybe I should head over to buy a dress.
"It was like the whole world shifted under my feet and I was terrified and I was in shock and I did not know what to do," said Yule, who lives in Caledon, Ont.
"My mind was everywhere."
Stella Mazza of Winnipeg got her news over the phone.
"All I could think about was, 'How long do I have to live?"' she said. "All you hear in the conversation is blah, blah, blah."
For both women, the instant of diagnosis remains vivid and clear. But afterwards, the moments blurred as they braved an emotional roller-coaster that took them to the heights of informed support and to the depths of Canada's complex medical system.
Nine years later for Yule, who calls herself not just a survivor, but a "thriver," and four and a half years later for Mazza, both remember the anxiety each felt entering a maze of doctor appointments, meetings with specialists, and the barrage of tests, treatments and medications. It was a whirlwind journey, forced upon them without a map or a "How to" guide.
"It was mind-boggling," Mazza said.
Fast-forward to the estimated 22,400 women and 170 men expected to be diagnosed with breast cancer in Canada this year. Now, two new resources are available for them and their families to help close that gap and manage their care.
"Being informed is empowering," said Donna Sheehan, manager of the peer support program at Willow Breast Cancer Support Canada. "Women don't realize that there's going to be choices."
"We know all the issues women face when they're diagnosed, so we thought we'd give them some practical tips and some solutions around it."
Willow, an organization providing free information and emotional support to people with breast cancer, recently launched "Managing Your Cancer Care: A Self-Advocacy Guide for Breast Cancer Patients." The glossy booklet is packed with insight and advice to help patients understand what will happen next.
It also explains the medical jargon of diagnosis and treatment, outlines what patients can expect from health teams, and encourages self-advocacy -- taking an active role in co-ordinating one's own care.
"You have a right to look after yourself," said Yule, who found Willow so valuable she's now become its executive director. "You have a right to be involved in the process, I think that's key."
Though it certainly feels like it, the world doesn't stop turning when you're diagnosed with cancer, says Carrie Sanders, a cancer survivor and psychotherapist in Bellevue, Wash. In May, she published "The Breast Cancer Journey Planner," a three-ring binder packed with resources and worksheets to simplify the treatment process.
"I felt like women just need to have something that they can hold onto, that allows them to feel like, OK, I can be in control of this."
"You really get a sense there is a friend in your hand."
Diagnosed at 19, Sanders said she was too young to truly understand what was happening to her. Now 39, her concern for others enduring the emotional trials and later experience working for a breast surgeon prompted her to create the guide.
"I was telling women what they needed to do, go get this CT scan, go get your MRIs, then you'll get some blood work, then you'll see this doctor, and then you'll come back here," she said. "And I would numerously receive phone calls back saying 'What did you say to me? I didn't hear anything you said."'
The binder includes a 10 helpful hints list, a calendar geared towards noting appointments, therapeutic fill-in-the-blank worksheets, and insurance and financial information. Sanders said the guide is hands-on because having breast cancer is "like a whole new job."
In the cyber age, both manuals relieve the pain of sorting through reams of information available on the Internet -- not all of which is reliable.
"What I did was weed out all the stuff women don't need to be reading," Sanders said.
Ultimately, she said, both resources were created with the same goal.
"To offer hope and soothe the spirit."
