SALT LAKE CITY — "Let me know how I can help."
That's an offer almost everyone diagnosed with cancer — 1.6 million Americans this year — will encounter.
And it's one of the worst things their friends, co-workers and family members can say, according to cancer patients and people who work with them.
"Don't do the whole 'let me know if you need help' thing," said Kim White, a mother in Kaysville, Utah, who has been in treatment since she was diagnosed with adrenocortical carcinoma in 2014.
"Don't offer to help; do the thing. Just go over and start washing the dishes," Sarah Miretti Cassidy, with the Cancer Hope Network, confirmed.
Kim White of Kaysville, Utah, with her husband and daughter. | Carin Davis
This is not to say people undergoing treatment for cancer and other serious illnesses don't need help.
Even when they're well-insured, many cancer patients face financial distress that erodes their physical and mental health, according to new research from Duke University. After treatment, cancer survivors struggle with mental health issues such as anxiety and depression at higher rates than the general population, especially if they live in rural areas, other research has shown.
Yet, numerous studies have shown that a strong and active support network can help alleviate the stress of serious illness and sometimes even improve outcomes for the patient. This means that how family and friends respond to a cancer diagnosis matters — a lot. New York City-based journalist and novelist Sally Koslow wrote for Family Circle magazine that the attention she received during treatment for breast cancer and breast reconstruction "fed my courage like an IV drip."
A survey commissioned by CBS News earlier this year found that 54 percent of Americans have had someone in their immediate family diagnosed with cancer, and the American Cancer Society says that 4 in 10 of people will have cancer at some point in their lifetime.
American Cancer Society, JAMA Internal Medicine | American Cancer Society, JAMA Internal Medicine
Despite its prevalence, cancer makes many people who don't have it nervous and uncomfortable. Most people don't know what to say when someone they know is diagnosed other than the well-meaning but often ineffectual "Let me know how I can help."
Cancer patients likely won't tell you, but they told the Deseret News. Here are some of the things that are most helpful to people struggling with illness.
Gestures that ease financial stress
In the Duke University study, published in the August issue of JAMA Oncology, researchers found that one-third of insured patients had unexpected out-of-pocket expenses, and that patients who were underinsured were paying up to one-third of their overall income on medical expenses.
Researchers have likened the "financial toxicity" as a side effect of treatment, and a cancer diagnosis doubles the chances of a person declaring bankruptcy, said Dr. Yousuf Zafar, an oncologist and an associate professor at Duke, in Durham, North Carolina.
While few people have the means to pay for cancer treatment outright, even small gestures can help to alleviate the financial stress that accompanies illness, said Cassidy, director of marketing and patient outreach with the nonprofit Cancer Hope Network.
“Because cancer is wildly expensive, it might be helpful to send a gas card or a grocery card or even an Amazon card or hotel gift card,” Cassidy said. “That’s a piece of stress you can take away.”
People can also set up a crowdfunding account to help pay for medical treatment on websites such as Gofundme, YouCaring or Helphopelive. The websites Caringbridge.org and Lotsahelpinghands.com offer a place to post updates on a person's condition and also coordinate help.
You can research ways that your friend or loved one can get financial assistance, whether for drugs through patient-assistance programs run by pharmaceutical companies, or for living expenses and treatments through programs like The Pink Fund that provides financial help to breast cancer patients in treatment. Then, once you've found appropriate programs, help them apply.
Feeding the sick
Friends bring meals; great friends bring freezers that are packed with meals.
That's what happened to White after her diagnosis. About 20 family members banded together and bought her a stand-alone freezer that they filled with a variety of frozen meals. They even provided an inventory of what was inside so she could cross an item off once she used it and always know what was left.
Even three years after her initial diagnosis, members of White's church are still bringing meals. But while food helps, particularly if the patient is a mom with a family to feed, some cancer survivors say it's important to keep the individual's needs and preferences in mind. In short, not everyone likes lasagna, and more isn't always better.
“People were bringing so much food, trays of food that feed a family of five, and I was a family of one, My appetite was nonexistent, and I felt guilty when I had to throw it out,” said Alli Ward, a resident of Catonsville, Maryland, who was diagnosed with stage 4 ovarian cancer 10 years ago at age 35.
If you want to bring meals, keep in mind that many people undergoing chemotherapy experience nausea and also find that their sense of taste has diminished. Just as in pregnancy, there may be something they crave. For Tammy Joyner, of Hampton, Georgia, it was watermelon that she found was nourishing and easy to digest.
Soup is always a good option, and it can be frozen. (Here, NPR shares a recipe from "The Cancer-Fighting Kitchen" by Rebecca Katz and Mat Edelson that has advice on how friends and caregivers can help a loved one keep eating healthy during treatment.)
A person struggling with a serious illness will appreciate a small gesture multiplied, such as receiving a greeting card, anonymous or signed, once a week for a couple of months, like White received.
But sometimes a big problem like cancer called for an equally big gesture, and that is what Joyner experienced when she was diagnosed with breast cancer in 2005.
Knowing that Joyner had always wanted to do something with an unfinished basement, friends showed up with a pick-up truck loaded with drywall, and other friends pitched in to turn her basement into an extra bedroom and a family room.
With children who were 13 and 8 at the time, the gesture gave the family a welcome distraction to what their mom was going through and a place for the kids to play while Joyner had space and quiet upstairs in which to recover: "It was one of the biggest blessings I've received in my life," Joyner said.
Marlys Johnson, who lost her husband to cancer in 2014, said one family friend announced during his treatment that, instead of flowers, he was paying for cable television.
Other useful household services are picking up groceries or dry-cleaning, dropping off library books or tax documents, taking the car for an oil change or walking the dog, Johnson says. During the Christmas season, one couple showed up to hang the Johnson's holiday lights.
Be a 'porch fairy'
Cassidy, who was a caregiver before joining the Cancer Hope Network, said seriously ill people appreciate "porch fairies" — people who show up and leave gifts on a patient's porch without knocking.
Johnson holds a "Porch Fairy Challenge" each year, encouraging people to be as generous as her porch fairy. She wrote on her blog, "Our Porch Fairy was an overachiever, gifting us with jars of homemade soup, chocolate, pumpkin scones, banana nut bread, mismatched socks, bouquets of flowers, bouquets of colorful fall leaves. And Chai tea. Every morning at 7:30 for several weeks, Chai tea was left on our front porch."
Other ideas for gifts include magazines and paperbacks that are easy to carry in a chemo bag, and warm socks or blankets — "anything cozy" — since people can get cold during chemotherapy, Cassidy suggested.
Roswell Park Cancer Institute, Buffalo, New York; American Cancer Society | Roswell Park Cancer Institute, Buffalo, New York; American Cancer Society
Koslow, the author who had breast cancer, said her favorite gifts included a Vermont Teddy Bear dressed like a nurse and gift cards that she was able to use to buy new bras after breast reconstruction. She also received a box of gourmet ice cream from Graeter's, an Ohio company that gives a portion of its September profits to cancer research.
Consult a registry (or set one up)
Amazon gives people a chance to list things they want or need, much like a bridal registry. Why shouldn't sick people be able to do that as well?
That's what the late Diem Brown thought before she died of ovarian cancer in 2014. Brown said she wanted a wig that cost thousands of dollars, but she couldn't bring herself to ask for money when friends asked what they could do for her.
Her idea turned into a website, Medgift.com, where people can register their needs, including financial or household help or items like a wheelchair or wig. The website says it "takes the awkwardness out of asking for help and makes it easy for friends and family to show they care."
“We tried to build a flexible tool that supported all the different needs one might have,” said Joe Hewitt, who helped develop the site. “A lot of times a little impersonality can help people open up.”
If your loved one isn't already registered, you can help the person set up a page.
Make them laugh
Alli Ward, the ovarian cancer survivor in Maryland, said she enjoyed getting "mindless reading" when she was in treatment because she found it hard to concentrate on serious topics. One anonymous person sent her a magazine subscription that fit that bill: "I got to read this crazy, inconsequential stuff and get a good laugh," she said.
Numerous studies have found that laughter can help people recover, and the organization for which Ward works, Stupid Cancer, offers an array of gifts to help cancer patients find humor during an extraordinarily difficult time.
Show up and do things
People in treatment for cancer or other serious illnesses are often plagued with fatigue that makes it difficult to do everyday tasks. Don't ask if you can do something, show up and "do the thing," as Cassidy said.
White said people would show up and do housework or clean out her car and fill it up with gas.
"I've been inside and heard the lawnmower going and looked outside to see a neighbor or someone's son mowing our lawn. And in the spring, a group of ladies were there pulling weeds and planting flowers when I got back from a doctor's appointment," she said, adding that sometimes a group of people would show up on the family's doorstep to sing, like year-round caroling.
To truly help, be super assertive, she said. Don't say, "Let me know if you ever need a ride"; say "What time are your appointments this week? I'm coming over to drive you" or "What time can I come pick up your children to take them to the park?"
Kim White of Kaysville, Utah, shown with her husband and 5-year-old daughter, advises people to be "super assertive" when helping someone who is seriously ill. | Carin Davis
Finally, remember that at many times, a seriously ill person most wants to hear two simple words: "I'm here." You don't always have to show up with gifts or a rake in hand. Sometimes, the best thing you can do is be present with the sick person — sometimes in the room, sometimes just nearby.
"The best thing was when people just came to be with me. They would say, 'You can talk about it if you want, or we can watch a movie or sit in silence. One friend came and just kept talking about her life, which was great — it didn't need to be about me. Just say, 'I'm here','' Ward said.
Added Cassidy, "In the end, it’s all about letting your loved one know that you’re there. Sweeping floors, sending gas cards and spa certificates or providing a cozy jacket are all wonderful gestures, but the most important thing you can do is let your friend know that you love them.
"A cancer diagnosis can be devastating and incredibly isolating. Don’t avoid your friend because you don’t know what to say or haven’t found the perfect way to help," she said.