Receiving a cancer diagnosis is a life-changing experience, not only for the patient but also for his or her family. Metastatic breast cancer (MBC) – the most advanced form of breast cancer – can be particularly emotional for caregivers to face because they must adjust to the fact that their loved one will have cancer for the rest of her life. While an MBC diagnosis is not something anyone takes lightheartedly, laughter can be helpful to successfully manage the journey.
No one knows this better than Bob Carey, Founder of The Tutu Project, whose wife, Linda was diagnosed with MBC in 2006. As a commercial and fine art photographer for 20 years, Bob has used his love of the medium to spread laughter, hope and support to those living with cancer all over the world. The Tutu Project started as a photo campaign and the project eventually grew into something much larger than he ever imagined.
Linda made it her mission to raise funds to provide financial support for breast cancer patients and their families. She and Bob joined forces to create The Carey Foundation, which distributes funds raised from donations and sales of Bob’s prints, calendars, t-shirts, postcards, and a currently sold-out book, to help cover expenses typically not covered by insurance, such as transportation, home care, child care and medical supplies. New photos are regularly added to The Tutu Project website and distributed through social media as each project is completed. The decision to wear only the tutu was Bob’s way of pushing the limits and emulating the bravery of cancer patients the best way he could.
Below, Bob discusses his and Linda’s shared journey of living with MBC and how his personal project involving a pink tutu has turned into a worldwide source of comfort, joy and inspiration for not only him and Linda, but also for thousands of women living with MBC.
AstraZeneca: How did the diagnosis of MBC affect you and Linda?
Bob: After being in remission from breast cancer for three years, Linda was diagnosed with MBC in 2006. Even though she had to begin treatment again, it seemed the MBC diagnosis was more emotional and psychological. With her initial breast cancer diagnosis, she understood that it was possible that she could die from this disease, but there was also a great deal of hope based on her surgery and subsequent treatment. When her cancer returned, the concept of hope changed, and the concept of death became a very real fear. Although Linda is a very positive person, which I believe has helped, her MBC diagnosis was the start of an emotional roller coaster for us.
AstraZeneca: Since learning of Linda’s diagnosis, how has The Tutu Project evolved?
Bob: Initially, it was a project to help myself and then became a way to make my wife laugh, as well as bring a bit of humor into our now upside down life. When Linda had a recurrence she took the images with her when she received treatment, and the emotions the photos conveyed seemed to resonate with the other patients. Now that it’s spread worldwide, I recognize that I have an opportunity to bring laughter and inspiration into the lives of people living with breast cancer.
AstraZeneca: What challenges have you faced being a caregiver?
Bob: The difficult aspects; seeing what Linda goes through daily. Although she’s amazing, it’s hard to not be able to fix everything. One minute she feels good and then the next she doesn’t, I feel kind of helpless. I know our life has changed, but even with MBC Linda is very active and since this project has begun it’s a major focus of hers. With Linda I feel like I’m more of an emotional support.
AstraZeneca: Can you share your top three pieces of advice for other MBC caregivers?
Bob: 1. Take time for yourself. Though this is about the one diagnosed with cancer, it’s important to recognize you also need to accept support from others and make sure you take time out for yourself.
2. Don’t take things personally. Most of the time it’s not about you, although it may seem to be expressed as such.
3. Sometimes it’s not about finding the right words. Sometimes it’s a hug or a touch that’s needed. This may take time to recognize.
AstraZeneca: How have you seen The Tutu Project help MBC patients and their loved ones?
Bob: By the Facebook messages and emails we receive, the images seem to impact those living with breast cancer as well as family members, sometimes even after their loved one has passed. It helps them on a daily basis – brings laughter and humor to their day. They pretty much know that we’re there for them.
While Linda and I were in Germany for a showing of a short documentary about The Tutu Project and gallery exhibit featuring our photographs, sponsored by Deutsche Telekom, we invited people to stop by the exhibit and say hello. One woman came up to us and asked us if we could talk to her friend on the phone. She was still in treatment and unable to travel the several hours to meet us. She cried when she heard our voices. We cried because it was such a touching thing for a friend to do for another.
AstraZeneca: How can individuals support The Tutu Project and the work The Carey Foundation is doing on behalf of the MBC community?
Bob: Donations can be made on our website: http://careyfoundation.org.