Living with breast cancer is easier with help
We've all read stories of someone who has breast cancer and is lucky enough to have an entire team of supporters rally around them, equipped with pink shirts, food chains and charity fundraisers in their name.
It's a great thing to see, but what if you have breast cancer and don't have that kind of support? How do you get through the hardest fight of your life if it's just you?
"You really don't get the support you need until you find people who have gone through almost the exact issues and treatment as you are going through," said Ann Burton, a 58-year-old breast cancer patient from Aurora, Colorado.
Paula Schorle has Stage Three Triple Negative Breast Cancer and has endured chemotherapy, radiation and a double mastectomy. She said her husband has been incredibly supportive, but the 46-year-old admits her support system isn't very big and she feels alone.
"I am from Ireland and other than my doctors at Dana-Farber Cancer Institute, I don't really know many people," said the resident of Marshfield, Massachusetts. "I work in the insurance field so I am kept pretty busy through the year and I really only took time off after my surgery."
Schorle is struggling emotionally with accepting the loss of her breasts and really needed someone to talk to. "I walked down the freezer aisle in my local grocery store and realized that I actually missed my nipples poking through a top when they get cold," she said. "It really upset me, but nobody talks to you about that side of cancer."
During her radiation treatments, she met a fellow patient who told her about a Facebook group for women with breast cancer. "I had tried an in-person support group, but it wasn't for me," she said. Schorle has since corresponded with other breast cancer patients and now she shares and posts in the group.
"Cancer is a lonely road that no one should have to suffer," she said.
It took Luanne Riley several months to wrap her head about her breast cancer diagnosis, but she's happy she has a strong network of church, friends and family who are always offering help. She understands not all patients are as fortunate as she is.
"I know most cancer centers have a nurse navigator or social worker to help people connect to social services that are available," said Riley, who lives in New Johnsonville, Tennessee.
Riley has also turned to Facebook groups for breast cancer patients for emotional and spiritual support. "There are also community and discussion boards on Breastcancer.org that I found valuable," she said. "Make connections and build a network, even if you haven't had it before."
When Donna, who asked that her last name not be used, was diagnosed, she met with a social worker at her oncology center. "They started a Young Survivors Support group which I was a part of for a year," she said. "There was also a program for our family to go together. We had dinner together, then the adults met with a social worker and a nurse, and the kids met with a social worker and a nurse. I also turned to books written by survivors, journaled, read the Bible and listened to music for comfort."
Speaking of books, Cat Gwynn was diagnosed with breast cancer and her family wasn't there for her, but her friends were. She even wrote "10-Mile Radius: Reframing Life on the Path Through Cancer" (Rare Bird Books, November 2017), a photo memoir of how she dealt with her own cancer. Reading about what others have gone through can often be supportive.
Sometimes, you'll find support in the most unlikely places. Last year, 52-year-old Lisa Maskara was diagnosed with stage four metastatic breast cancer. She stopped working to undergo months of chemotherapy and her support circle was huge; her family, friends and community hosted fundraisers, made dinners and helped however she needed it. "I also reconnected with my local high school class of 1984 online," she says.
Looking back, the only person missing from the early months of her fight was her best friend. "She was the one person I thought would've been there for me since the beginning, but wasn't," says Maskara, a Yonkers, New York resident and mother of two grown children. "She just didn't know how to process it all." It took a few months, but Maskara says her best friend has since come around and been by her side ever since.
Unfortunately, during my own breast cancer battle, I was surprised to find out some so-called good friends and even some close family members, who I thought would be by my side throughout the hardest fight of my life, would never even show up and one of them only lived 20 minutes away from me!
They never stopped by to see me, bring me food, help with my lawn or even give me a hug. So I learned to "expect the unexpected." Instead, I found support from my writer friends who made me comforters and mailed me a bunch of surprises. They checked in daily, sent funny videos to cheer me up and called me when they sensed things were tough. I wouldn't have made it through without them.
I also reconnected with a childhood friend who I missed dearly and she visited me and sat with me during chemo treatments. While some patients might be afraid to tell people what they are going through, it's important to speak up. You'll need help and support through the rough times.