On this week's Friday Forum, WNIJ's Jenna Dooley talks with Noel Storm and Casey Clabby who helped make the film for others to understand life after the diagnosis.
Noel Storm had a bilateral mastectomy in 2007 and it changed her life forever.
"Once I had my surgery, I realized that my purpose was to help other women through the process of the surgery because I realized there was so much emotional baggage that went with it," Storm said.
She started a support group at Living Well Cancer Resource Center in Geneva, part of Northwestern Medicine. She made hospital visits to connect women with the group.
In 2009, Casey Clabby was starting her own journey.
"Unfortunately, I had many complications from the beginning," Clabby recalled. "Noel came to me in the hospital and told me about her support group. And being an extremely private person, I was not going to go to a support group."
She said as the complications continued, her husband drove her to the group.
"And at that point, I realized how important it was to let people into your journey that you trust," Clabby said.
Storm and Clabby realized that there weren't many resources on how to navigate the emotional side of a diagnosis so they set out to make a documentary. But they didn't have the technical expertise until Clabby got a tip from her hairdresser.
"I was telling her about the concept of the documentary," Clabby said. "She said, 'I have a client whose son teaches at NIU. Let me make some phone calls.' And we met with Michael Corvino, and knew immediately it was a good match."
Storm calls the connection a "God thing."
Corvino gave the women most of the creative control over what the final film would look like. Clabby says that made a difference.
"I think the thing to point out with that first meeting is we needed someone who, as a male, our participants in the documentary would be very comfortable with sharing," Clabby said. "And so we shared our stories without leaving anything out."
He also filmed and edited eight years of footage for free.
Clabby says the intended audience is men and women with a diagnosis as well as caregivers.
"I'm a retired nurse, and through my process in it, and in talking to a lot of women, understanding that the healthcare team -- from doctors to nurses to social workers -- try to empathize but many of them truly don't understand how deeply emotional the impact is," Clabby said.
For those who have just received a diagnosis, the women have some words of wisdom.
"I think my advice would be that this is a process and you need to be gentle with yourself and give yourself time and to understand it's much like that grieving process," Clabby said.
Storm says there is also a learning curve for the families of those with breast cancer.
"Your family wants you back," Storm said. "And they don't understand that there is a lengthy process to go through. You're going to be changed -- you will be changed forever."
Clabby agrees. "There are so many days in our lives afterwards that can be joy filled and wonderful," Clabby said. "And you learn how courageous you are as a woman and how wonderful life can be and you go on living and it's good."
Hidden Scars: Emotional Impact of Mastectomy and Cancer-Related Experiences will be screened at the Living Well Cancer Resource Center in Geneva on Jan. 17 from 6:30-8:00 p.m..