Caregiving Is Tough, Even for an Oncology Nurse
Sally, center, and her mother-in-law enjoying a family gathering in 2015.
When cancer came to her family, our CEO Sally Werner, R.N., B.S.N, M.S.H.A., turned to CSC’s Helpline for extra support & guidance during a challenging time.
More than 2,000 miles lie between Sally, who lives with her husband in the Northwest, and her parents-in-law, who reside in the Midwest. That kind of distance between loved ones can feel overwhelming, even insurmountable, when there’s a serious illness in the family. But when it comes to supporting a family member through such a challenge, distance doesn’t need to be a barrier. That was true for Sally when, a few years ago, her mother-in-law was diagnosed with kidney cancer.
After learning about her mother-in-law’s diagnosis, Sally’s instincts and training as a former nurse kicked into high gear. She quickly stepped in to help, in every way she could, from afar. “I’ve known my mother-in-law since I was 15 years old,” says Sally, “so she’s like a second mom to me.”
As a long-distance caregiver, Sally is among an estimated 7% of caregivers in the United States who live at a distance — more than 2 hours — from their care recipient’s home.1 In Sally’s case, the distance is significant, spanning multiple states and 3 time zones. Despite that physical hurdle, she has been able to provide meaningful support to both her mother- and father-in-law throughout their cancer experience.
It’s OK to ask for help. It’s important to ask for help.
Sally, CEO, Cancer Support Community, and cancer caregiver
“We have to be humble.”
Sally’s nursing background includes a unique mix of clinical and management experience in a range of cancer care settings. So, when she stepped into her cancer caregiver role for her mother-in-law, she thought, “I got this. I know what to do.”
Her mother-in-law’s first line of treatment was a nephrectomy, a surgery to remove the cancerous kidney. Because of her experience as a nurse, Sally knew what to expect from the procedure.
“That’s a big surgery,” she says. “So, I dropped everything and went and lived with her for a couple of weeks, just to be there post-operatively and get her back home [from the hospital].”
During her visit, Sally provided extra caregiver support to her father-in-law, “who is phenomenal,” she notes. Together, the caregiving duo helped her mother-in-law recover during those 2 weeks after her surgery. “We nursed, and I mean very literally nursed, her back to health before I left their home,” says Sally.
Without a doubt, Sally’s nursing experience has been helpful in her role as a cancer caregiver. “I always get the first phone calls, every study result that comes through,” she says. “So, I can help interpret and mediate a little bit.”
But even with her cancer care knowledge and experience, Sally still has the same types of questions and worries that all caregivers face. Today, as CEO of the Cancer Support Community, she knows the value of asking for help, wherever you are in the cancer experience. She also acknowledges that it’s not always easy to ask for help, but it’s a vital step to find the support you need.
“All cancer is complex,” Sally says. “It doesn’t matter what the diagnosis is. Regardless of where you’re at or who you are, it’s always better to reach out than not. There are probably some resources I would have tapped into even earlier [in my caregiver experience] had I been humble enough to reach out and say, ‘OK, help me with this.’ Regardless of our background, we have to be humble. It’s OK to ask for help. It’s important to ask for help.”
Today, cancer patients, survivors, and caregivers have access to more support resources than ever before — resources that can help them navigate the complexities of a diagnosis and ease the burdens it can bring. Personalized cancer navigation, educational resources, and support programs are just a few examples of resources that CSC provides, at no cost, to anyone impacted by cancer.
In her own caregiver journey, Sally has turned to CSC’s resources for guidance, education, and support. She has shared many of these resources with her parents-in-law, including educational guides and fact sheets that break down complex information about kidney cancer and treatments into simple, conversational language.
“CSC’s resources, including the Helpline, were my fallback,” she says.
Our Helpline Is Here for You
The Cancer Support Helpline is staffed by a team of community navigators and resource specialists who have extensive experience helping people impacted by cancer. Get free, personalized navigation by phone or online for a variety of cancer-related needs.
“I had to take a step back.”
For months after her mother-in-law’s nephrectomy procedure, Sally and her family experienced scanxiety. Each time her mother-in-law had a follow-up scan, they worried: Has the cancer spread? Has it gone somewhere else?
About a year after the nephrectomy, a scan revealed that her mother-in-law’s cancer had, unfortunately, spread to other organs. While her mother-in-law’s cancer care team was world-class, says Sally, they recommended an aggressive treatment option: a Whipple procedure. It’s a complicated procedure, explains Sally, and recovery would be rough for her mother-in-law.
A Whipple procedure is a surgery that removes the head of the pancreas, the gallbladder, part of the stomach, part of the small intestine, and the bile duct. The surgery comes with many risks and potential complications. One risk is the possibility of developing lifetime diabetes. Although enough of the pancreas is left after surgery to make digestive juices and insulin, it may not produce enough insulin to control blood sugar.
As Sally’s mother-in-law navigated critical conversations about the procedure with multiple specialists, says Sally, “She had to make a really big decision. Does she do more surgery? Does she do more chemotherapy, or immunotherapy intervention? I was so close to it at that point, and so emotional, that I had to take a step back.”
Sally wanted objective, professional guidance on getting a second opinion for her mother-in-law. For support, she turned to one of the best cancer navigation resources she knows: CSC’s Cancer Support Helpline. “I said, ‘I need your help. I know I’m not being objective at this point.’”
Sally’s navigator, Karen, did an amazing job, she says. “Karen spent time talking with both my mother-in-law and my father-in-law, discussing their goals of care and values of care. And then, together, we all decided on getting a second opinion. Within less than a week, we had all the paperwork put together.”
Should You Get a Second Opinion?
If you or a loved one has been diagnosed with cancer, you may be wondering if you should get a second opinion — or how to get one. Here’s what to know, and what you can do.
The second opinion was done virtually, so Sally’s mother-in-law didn’t even need to leave her home.
“It didn’t require her to travel, and she didn’t have to collect her own medical records,” says Sally. “We did that for her through social work, so it couldn’t have been easier.”
The second-opinion recommendation was immunotherapy, a type of cancer treatment that uses the body’s immune system to identify, attack and kill cancer cells. Compared to the Whipple procedure, it has far fewer side effects, notes Sally.
Her mother-in-law chose immunotherapy. After just one round of treatment, her cancer shrunk by 60%.
“She hadn’t gone through a major life-altering surgery, and she was getting results,” Sally says. “So, from a distance, it’s just such a relief that we had the right care team, and the right plan of action, using CSC’s resources as a whole additional layer of support.”
All cancer is complex. It doesn’t matter what the diagnosis is. Regardless of where you’re at or who you are, it’s always better to reach out than not.
