Christine Bout says she works at living. By any account, she’s pretty successful.
In 2003, at age 52, Bout learned she had stage II, hormone-receptor-positive, HER2-negative invasive ductal breast cancer, with no family history of the disease. In 2009, she learned her cancer had metastasized and doctors told her she had two years to live.
“But here I am ten years later,” says Bout, who lives in Burra, a former mining town in South Australia. “I keep saying I’m defying odds and I’ll continue to do that as long as I can.”
Back in 2003, Bout began what was supposed to be six rounds of chemotherapy for a month at a time, but it sickened her so much that her oncologist refused to give her a second month of treatment. She learned she was missing a liver enzyme so she couldn’t tolerate the chemotherapy.
“I felt devastated to hear this,” she says. “My oldest daughter was caring for me at the time. She told me I was actually green. I don’t think I’ve felt that ill in my life.”
She reached out to a second physician who suggested she begin taking the hormonal therapy tamoxifen. But three weeks in, “it gave me the rarest of rare side effects, a heart attack,” she says. She tried Fareston, a different hormonal therapy medicine, but after a week, “I could feel my heart acting the same way.”
By the end of the year, she underwent a radical mastectomy and had 12 lymph nodes removed — all tested negative for cancer. But Bout learned she had lymphovascular invasion (LVI), where cancer has spread to the blood vessels and/or the lymphatic system. “There were lots of questions, like, ‘Is what I have normal? If it is, I can deal. If not, I’ll find information.’”
But in 2003, it was hard to find her people. “I could not find any helpful things. I looked online but couldn’t find people in Australia with breast cancer. I rang the Cancer Council in Australia and asked for people who had breast cancer, but they only had counselors. All they are learning is [from] reading, and it has nothing to do with their qualifications — they really do not get it. I very much believe that if you have a problem, you want to talk to someone in the same shoes as you. That way, you know they aren’t bullshitting you.”
Bout looked online but found it difficult to locate other women living in Australia who were also online and talking about living with breast cancer. She developed her own method of finding people going through the same things she was, in the era before Facebook and other social media were as prevalent as they are today.
“I had cards made up and went up to people while I was out shopping, or at the petrol station,” she says. “When I heard people talking about breast cancer, I gave them my cards in case they wanted to talk to someone living with it.”
Through that process, Bout eventually found others she could talk to and share experiences with. Eventually, she found the Breastcancer.org Community in 2009, as well as Facebook groups for people with similar diagnoses.
Once she found Breastcancer.org, Bout became an active Community member, writing under the screen name chrissyb. Ultimately, in one of the many forums she posted in, the idea came up of making the trip from Australia to visit other Breastcancer.org members in the United States.
“I had a very small insurance policy of about $3,000 mature, and my husband Arie said ‘Just do what you like with it,” she said of the 2011 trip. “If you want to go, go.’”
Bout, at 59, got a passport and planned to leave Australia to visit her friends in the U.S. People were excited. “Everybody jumped in and said, ‘Stay with me,” she says.
Bout’s journey took her from Australia to Singapore, then two days in London, and then to Philadelphia. “There, I was picked up by a girl I was friendly with, and I stayed with her in New Jersey. Then I went to New York, and then flew to North Carolina. While there, another lady picked me up, and I stayed with her overnight. Then she drove us to the Outer Banks and we connected with another lady. After that, she put me on a plane and I flew to Hollywood, Florida, where I stayed with another couple of women.” From there, she flew to Atlanta, then connected to Branson, Missouri, where she met another woman, Mary B., who hosted the trip in her family’s vacation home in Shell Knob, Missouri. “She organized the trip from start to finish,” says Bout. “Unfortunately, she has passed over now. She was a lovely lady.”
The trip was an amazing experience, Bout says. “I was expecting to meet with six women and I came away meeting 40. I really think of that trip as one of the best of my life. Everyone was so lovely, and everyone knew exactly what was going on and how everybody else felt. We lived, laughed, and ate. We had a lot of fun.”
The trip continued for Bout, after she left Shell Knob, Missouri. She continued on to San Antonio, Texas, where she met several others, and the went on to Denver and later, to Los Angeles and San Diego, meeting friends along the way. From L.A., Bout flew to Auckland and met another Breastcancer.org friend. What began as a three-week trip had become a journey of seven weeks, ending in October, 2011.
“All the ladies, I love them dearly,” Bout says. “I would love to meet up with them again. A lot of them were early-stage, and many have returned to things as much normal as possible. For some, you get over the hump (of a cancer diagnosis), but then, it becomes a thought in the back of your mind.”
Today, she says, she sees her friend in Auckland every second year, and one friend has come from New Zealand to visit her in Australia. “I’m not massively active (in the Breastcancer.org Community) anymore, but I check a few of the threads every day and see what’s happening.”
Besides her online friends, Bout has a large supportive family. In addition to her husband Arie, with whom she recently celebrated their fifty-year wedding anniversary, Bout has two adult daughters Camille, 49, and Marijke, 46, (Bout’s son died earlier at age 23), along with three grandsons and a granddaughter, all in their 20s. Two great grandchildren and two step-grandchildren, ranging from age 5 down to 3 months old, round out the family portrait. “They are all in Australia, about three hours away, and I see them often,” she says.
A typical day finds Bout waking up around 9 am, checking Facebook, Breastcancer.org, and the weather, then sending and reading emails. She also crochets, quilts, and gardens. “I have a large garden with many pots in my courtyard that I nurture,” she says. “We’re coming into summertime so it’s time to put my tomatoes in.”
Having lived with breast cancer since 2003, Bout’s advice to others is based in self-advocacy.
“Research, research, research; get your facts right,” she says. “Know what your treatment is, what they are targeting, ask the questions and don’t be told no. You are your best advocate. With your doctor, you have to make sure they work for you, and not the other way around. If you can, use Breastcancer.org; it’s a brilliant site. I still recommend it, above and beyond anything we have here in Australia, for its information.”
And of course, don’t lose sight of life beyond breast cancer.
“The most important thing is, try to keep things as easy as possible,” she says. “Make sure you laugh every day, even at stupid things or images on Facebook. If you have children or grandchildren, hug them to death and just live. Absolutely live and appreciate everything — even the snow, the rain, the heat. Appreciate everything.”
Written by: Cheryl Alkon, contributing writer
This article is part of Circle of Care: Finding Support with Metastatic Breast Cancer, presented by:
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