If it takes a special kind of woman to stand up to breast cancer, remain positive, question experts’ recommendations, and take control of her own care, then surely it takes an extraordinary woman to turn the whole experience into a career opportunity. Meet Christine Bienvenu.
At a time when most teenagers are contemplating college options, the then-17-year-old Bienvenu moved from Montreal, Canada, to Switzerland. In the land of Emmental cheese and punctuality, she had the opportunity to do an apprenticeship directly after high school. “Not everyone is made to sit in a classroom, the hands-on experience is very valuable for a lot of young people trying to figure out what they want to do with their lives. It worked for me,” Bienvenu notes.
Already fluent in English, she requested to substitute the language class requirement with a volunteer opportunity. She worked at a local senior center and liked it so much that she realized she wanted to continue the work outside of mandatory class hours. “I felt like a fish in water,’” Bienvenu recalls. After high school graduation, she signed up for a 3-year apprenticeship in a nursing home. And for the next 15 years, worked as a social activities coordinator in three different nursing homes, at one of which she met her husband, Alain. “In case you are wondering, he was the chef, not a patient. Who says exciting things don’t happen in nursing homes?” jokes Bienvenu.
In support of Alain’s long-time dream to open a restaurant, Bienvenu took a break to support him. Together, they worked a grueling 16–18-hour days, 6 days a week. “It was struggle, especially with a small child, and not particularly rewarding as the income was just enough to cover our expenses. We went into it a little too wide-eyed and optimistic.” So after two years, they decided to let go of the dream.
Bienvenu returned to the eldercare sector and found a job again as an activities coordinator, which she held for five years until a restructuring was announced. Her new contract required her to work irregular shifts. Her husband, head chef at a restaurant in Lausanne, also works non-standard hours. Between them, they agreed it would be impossible to manage the hours and two young children, so Bienvenu demurred, “I saw it as a sign to take a break and stay home with my little ones.”
And then came the terrible news. With no familial history of breast cancer and only 35 years old at the time, Bienvenu was diagnosed with triple negative breast cancer (TNBC). Considering her age, they had to move fast. Within one month of the diagnosis, Bienvenu underwent a tumorectomy in her right breast in hopes of saving it. Another month later, she started 18 weeks of highly aggressive chemo. Unfortunately, the tumorectomy revealed that her entire right breast had pre-cancerous cells and so she ultimately decided to undergo a bilateral mastectomy with immediate reconstruction. “It was a pretty intense time. When you are on the wrong side of the statistics, you just go with what you’ve got. You don’t really have a choice. I was ‘out to lunch’ for several days after chemo treatments and the children were so young. My husband, sisters, and mother had to pick up the pieces.”
At the time of her treatment, many of the cancer resources available for women suffering TNBC were targeted at older women, and Bienvenu had a hard time finding helpful advice. “The issues facing older women with cancer – not to detract from that – are very different. They don’t tend to have young children at home. The issues between husband and wife are not the same at 55 or 60 versus 35 years.”
She also found the Swiss support group meetings she attended to be anything but supportive. Generally Swiss people and are not known for their willingness to question authority. “I found everyone to be so passive in the discussion. It was always, ‘Well, my doctor says this…my doctor has it under control … But I’m not a passive person! I’m a proactive person, I like to get answers and do things for myself.”
Frustrated by the lack of information and the “old-school paternalistic approach” and knowing that she was not the only young cancer survivor in Switzerland with different needs, Bienvenu struck out to find like-minded people, women and men who would understand her. “I needed to find people who were like me, going through what I was going through, and with whom I could discuss things I couldn’t speak about with my family for fear of hurting or scaring them.”
She turned to the internet, specifically online cancer communities or forums and social media. What she found was very helpful and guided discussions she had with her oncologist. She questioned some of the advice she was given and started seriously considering a double mastectomy after she read that TNBC could be more effectively treated by removing all of the breast tissue. “I respect doctors but they are only human. Several heads thinking together on how to tackle a problem is better than one. There is a need to be more critical of traditional treatments. For me, it made perfect sense, the more I take off, the less chance I have of relapse.”
Her oncologist was not in favor and the surgeon was up in the air, so the no-nonsense Bienvenu got a second opinion from a Professor at the breast center in Lausanne, who also thought the double mastectomy was the better option. After weighing the pros and cons, the fact that there was no way to detect pre-cancerous cells made Bienvenu decide to err on the side of caution and undergo a double mastectomy. The dread of wondering whether the left breast would also one day present with TNBC won out over keeping it.
Through it all, she remained active on social media and maintained contact with people in the breast cancer community abroad. Although the online resources were remarkably helpful, they were targeted at a North-American audience. “It was very healing for me, but when it came to ‘translating’ all the advice to my context, I started to see the gaps. While the issues may be the same, the Swiss way of handling them is not. Much of the information on protocols, insurance, doctors’ approaches, financial aid and so on is quite different.”
And so the seed was planted for Seinplement Romand(e)s – an online breast cancer platform across social media – and in it, Bienvenu found her calling. If she could not find the support she needed, she would create it – as much for herself as for others. It was not going to be easy as the Swiss, even today, are apprehensive of social media.
To help get started, the resourceful Bienvenu turned to the Swiss disability insurance program for assistance in job retraining. It was clear she would not be able to return to her profession due to physical limitations that would restrict her from pushing wheelchairs, lifting elderly patients, and the like. At first, officials resisted. “They wanted me to train to be an office manager as they didn’t see the benefit in social media training. It was only the beginning of many battles I would have.” But Bienvenu was tenacious and finally won them over. She received financial support for a 1-year program in social media and online communities, which she started in 2012.
With her health back on track, she threw herself into her classes, “I absolutely loved everything about the courses. I finally found where I was supposed to be and it felt great to feel professionally competent again!” Her thesis was essentially the business plan of Seinplement Romand(e)s. The platform merges many channels of communication and is a place where French-speaking people can come to find information and support, share experiences, and exchange ideas with other patients about their situation. It is open to both men and women (thus the “e” in parenthesis indicating the feminine noun). “I wanted to make it inclusive because not only do men suffer from breast cancer directly, but they are usually the ones left keeping the household and family going while the woman is going through treatments or recovering.”
It hasn’t been an easy ride, but the resilient Bienvenu continues to push on. Two weeks before she presented her thesis defense for her diploma, she relapsed and had to start another 15 rounds of chemo and radiotherapy. Offline she reached out to lot of associations and women’s groups to try and broaden the community across Switzerland’s six French-speaking cantons. “That was a frustrating experience. Decision-making in Switzerland is highly centralized. There are 26 cantons, each with its own cancer organization. I got the same answer from everyone I approached: ‘Oh, that’s an interesting idea, but social media? We are not ready for that.’ But then my thesis advisor suggested – instead of going top down – to create the community from the bottom up. And so that’s what I did.”
And finally, the “top” is noticing and coming to her. Her community is growing all the time and Bienvenu has become very active in the whole Health 2.0 for French-speaking Switzerland and France. She will speak at Doctors 2.0 & You this summer and works in collaboration with the Geneva and Lausanne University hospitals on various 2.0 projects. She was chosen to translate Dave DeBronkart’s book Let Patients Help! in French. “Social media has enabled me to meet fascinating people that I wouldn’t otherwise have been able to meet and to get involved in incredible projects that I could never have imagined. It’s ironic that being so ill has enabled me to find skills I never knew I had, and invest in a passion that would grow into a career.”
Disability pension is a key form of support for Bienvenu and has enabled her to keep Seinplement Romand(e)s independent. “I want this neutrality so it can be open to everyone. I could probably cash in, I live in the country of pharmaceuticals after all! But right now, I am satisfied with the recognition that I am helping others. But honestly, it’s not even really the recognition. I do it for the community. I’ve made some wonderful friends, the journey has just become so fascinating. Who would have thought?”
Christine Bienvenu Tips for Surviving Tough Times:
- Have confidence in yourself and your gut feeling. Trust that above all! You can respect experts in the field, be they in the medical sector or otherwise, but your own personal experience counts for a lot.
- It’s OK to take no for answer as long as you have a valid and logical explanation why the answer is “no”, otherwise keep pushing.
- In my situation, educating myself was crucial for me to stay strong and be considered an equal partner in my care. This can be applied to any situation really. No one can know everything, stay humble, and bring knowledge to the table.
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