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By Cathie Ericson
| October 15, 2019
This article is a part of BG BrandLab’s Breast Cancer Special Report, assessing the progress we’ve made in the battle against breast cancer and the barriers that we still need to overcome.
A breast cancer diagnosis can be devastating, not only for the patient, but also for everyone surrounding her. Hearing that a loved one has breast cancer evokes fear, uncertainty, and often, helplessness. Loved ones wonder what to say—or not say—and what they can do to help.
Boston resident Jessica Nam Kim knows the feeling. She had three kids under age 10 when she became a full-time caregiver for her own mom who had cancer—the epitome of what it is called “the sandwich generation.” Her experience led her and her cofounder, Steven Lee, to develop a free app designed to make it easier for caregivers to rally support.
Launched in July, ianacare (which stands for I Am Not Alone) simplifies the way communities can provide practical help to those with cancer and their caregivers, such as meals, respite care, child care, pet care, and assistance with errands or household chores. Kim has had caregivers tell her that using the app gave them “permission” to ask for help with tasks that might not automatically occur to potential helpers, like folding laundry or dragging the garbage cans down to the curb.
“Being a caregiver can be isolating and lonely, but it’s not in our social construct to reach out and ask for help,” Kim says. “The goal of ianacare is to alleviate this quiet suffering.”
Offering household aid is just one approach for providing tangible support to a loved one. Another way is by suggesting additional support services. “Many patients might be worried about finding transportation to their treatments and appointments or how they will pay their bills if they have to take time off from work,” says Katie Finn, manager of the Cancer Center Patient Navigator Program at Boston Medical Center.
She recommends connecting them with resources, like transportation or financial and nutrition support, or creating calendars to help them track their appointments. You can also identify cancer support groups where your loved one can build a community, either in-person or online.
Candid advice on what to say (and not say)
Of course, one of the biggest ways people can support the ones they love is simply by talking to them. But that can feel scary, since no one wants to put their foot in their mouth. And while there is no “wrong” thing to say, there are some common statements that may cause the patient distress rather than comfort, says Julie Salinger, clinical social worker in the Breast Oncology Center at Dana-Farber Cancer Institute. Here are some common statements that could be misconstrued:
So, if those issues are off-limits, what can you talk about? Just normal things, says Erica Criscuolo, clinical social worker for the Cancer Center at Boston Medical Center. “Keep the lines of communication open, and make sure your friend knows you’re here to help them process their diagnosis, but also remember to talk about everyday topics to help them be part of the world.”
She finds that it can be easy for those with diagnoses to fall into depression, so it can be helpful to talk about the same topics you used to discuss, like what they thought of the latest episode of “The Voice.”
And while you might just sit and be silent with your friend, don’t be silent about the situation. “Acknowledging that you know and want to be there to support them is better than avoiding the issue,” Criscuolo says.
In fact, loved ones should recognize that merely being present is a huge help to the patient. “Ask them what they feel is hardest right here at this moment, if you want, but realize that just being there with them is a great gift,” Salinger says.
Sharing the news with kids
Criscuolo typically recommends patients or caregivers tell those around them whenever they feel comfortable. But that advice changes a bit when there are little ones involved. “They are so observant, and they know something is going on,” she points out. And that means they will start filling in the gaps, sometimes imagining scenarios even worse than the truth.
“It’s counterintuitive because you want to keep children from worrying, so your first instinct may be to keep the information from them, but the child almost always already knows that something big is happening in the home,” Salinger says. “Your intention is to protect them, but withholding truth may do more harm than good.” Additionally, keeping secrets in a household can be exhausting for a patient, and it’s usually a relief to finally have everyone aware.
When talking to children, use real words, like “cancer,” not made-up, “baby talk” words. Be truthful about what you know and don’t know, and promise to update them as you get new information. Reassure them that any questions are fine and any emotions are fine, be it anger or sadness or even nothing at all.
While it’s okay to show emotion, Salinger recommends waiting to tell children until you can deliver the news without completely falling apart. She also suggests practicing the conversation so you will be used to be hearing those words come out of your mouth, then working with a partner to rehearse reactions and even plan what questions your partner will ask.
Criscuolo says it’s important to recognize that everyone’s reactions will be different. A teen might want to shoulder more responsibilities, or struggle with anxiety and worry. A preschooler might have trouble handling their emotions but be unable to recognize why. Depending on the child’s age and comfort level, they may benefit from attending appointments with the patient so they can ask their own questions, or from joining a support group.
It’s also important to explain the changes they are going to see. For example, Kim told her kids that chemo was helping their grandma fight off the bad cells, but it might make her lose her hair and sap her energy.
And finally, Kim says, remind kids they did not cause this disease, and there is nothing they can do except make the patient feel happy and loved.
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