Journal News editor Karen Croke reported on the best ways to help loved ones when they’re diagnosed with breast cancer, as part of our ongoing coverage for Breast Cancer Awareness Month. Here’s the story as it appeared in print on Oct. 23:
“What can I do for you?”
Sounds exactly like what a cancer patient would want to hear, doesn’t it? Turns out, these are the last words those battling breast cancer want to hear come out of the mouths of well-intentioned friends and family.
“This sounds terrible, but it was a little annoying when someone would say, ‘what can I do for you?,’ ” says Stacey Sypko of Patterson. The 45-year-old mom of two boys, now 5 and 7, was diagnosed in May 2009.
(Photo illustration by Xavier Mascareñas / The Journal News )
What would have helped, she says, is friends taking a can-do attitude rather than hanging back and waiting for guidance.
“If you want to do something, cook something and drop it off — great. But don’t make me tell you how to help me. It’s hard to ask for help actually.”
It can be as equally difficult for those supporting a loved one with breast cancer, and that’s a large group. According to the American Cancer Society, three out of every four American families will have at least one family member diagnosed with cancer. And most of us are confused about what to say, what to do, and how to help.
Those battling breast cancer have the best advice: Offer to cook meals, walk the dog, help with child care or give rides to treatment, they say. Be specific; saying “let me know if you need anything” won’t do much good if a person is shy about asking for help.
When Susan Reif got the news that her cancer was Stage 3, large and extremely aggressive, her world, understandably, stopped.
She moved from Wisconsin back to Rockland County to live with her parents in Sloatsburg, while she underwent treatment, and says she was lucky to have friends and family rallying by her side.
Breast cancer survivor Susan Reif of Tuxedo said her friend sent her postcards every day, which helped her greatly. ( Xavier Mascareñas / The Journal News )
However, it was so hard for Reif to tell those well-meaning people what would work best for her, that she actually wrote a book, “39 Things to Make a Cancer Patient Smile,” which she self-published this year. (It’s available on Amazon.com.)
“Everybody has this reaction: ‘I don’t know what to do, I’m afraid, should I call or not?’ There is no etiquette surrounding breast cancer,” says Reif, who now lives in Tuxedo.
“The book kind of wrote itself. I felt, I need to share what helped me,” she says. “I am very lucky because I know the impact my friends and family had on keeping my spirits up and really making me smile.”
For Susan Recine, the hardest thing was realizing friends she thought were steadfast weren’t coming through in her time of need.
“The ones you thought would be there for you, some of them friends I had from high school, just had no clue,” says Recine, of Tarrytown, who got her cancer diagnosis on her son’s 21st birthday last year.
Especially insensitive, she says, were remarks that her friends thought would be positive, but actually had the opposite effect, after Recine underwent a double masectomy and a painful process of reconstructive surgery.
“Friends would actually joke, ‘go to a D-Cup, get ’em bigger,’ ” says Recine, still angry. “I was like, are you kidding? I have no breasts, I have no nipples, I have nothing and you’re making a joke?”
Susan Powers says you have to understand that cancer will always be a part of your friend’s life. “I was Stage IV and I will always be Stage IV,” says the 44-year-old from Blauvelt. “You can’t climb back down the ladder from that.”
When she was diagnosed, Powers was told to “get my affairs in order, that I had three months to live; I had two small children,” she says. “It’s been eight years, but it never leaves you.”
That message hit home when her brother-in-law, Mike Feiman, was diagnosed in February. “Even my doctor said I had a better chance of winning the lottery,” says Feiman, 43, who lives in Rockland. “Being a man with breast cancer, it’s the hardest thing.”
Having been there, Reif, Recine, Powers, Feiman and Sypkos have advice on what helps someone who’s battling breast cancer, and what doesn’t.
Do: Offer support.
Mike Feiman says having his sister-in-law to support him has been invaluable since she’s been through it herself. “We’re even on the same medication,” he says. Even if you have no experience with cancer, you can help by researching support groups, or reaching out to others to provide information and resources.
Don’t: Tell a cancer patient what they should do.
It’s great to point out resources and information, but don’t expect your loved one to simply follow your lead.
“I decided not to have reconstructive surgery and people fought me like you would not believe,” Powers says. “Everyone had their own opinion about what they would do, where to go for treatment, you name it. You have to stand up and say, ‘This is me, this is who I am, this is what I want.’ ”
Do: Send cards.
Reif says sending cards is a great idea and to start sending them as soon as you find out a person is ill. Write things like “thinking about you” and “sending hugs.” “Just letting the person know that they’re in your your thoughts and prayers makes a world of difference,” Reif says.
On the flip side, it’s best to keep cards upbeat. Recine received cards, too, but the messages took on a bit of a morbid tone. “These were of the ‘We are praying for you,’ variety and I can understand where the person is coming from, but it was a little like a funeral or mass card,” she says.
Do: Offer to take your friend’s kids, if only for an hour at the playground, or for a lunch.
Not only is it great for children to maintain some semblance of normal life, like playdates and trips to the mall, it gives the mom or dad battling cancer some much-needed time alone, Stacey Sypkos says.
“If it’s a mother, and if there are young kids, it’s a good thing to offer to take kids out of the house for awhile. Just to give that mom some time just to be alone,” Sypkos says.
“For so long, breast cancer was in the forefront of my brain. It’s all I thought about,” she says. “I could be in a room with the kids and completely unaware of what they were doing. If someone had come along to take them for an afternoon, I would have been so grateful.”
Don’t: Expect to get something in return:
“Someone gave me crap one time,” Sypkos said. “basically, ‘I watched your kids for you one day, and you wouldn’t watch my kids.’ I was like, you know, I just had surgery.”
Do: Offer to drive and go to doctor’s appointments.
Whether it’s to church, a pedicure appointment, or picking up a kid at school or basketball practice, every little trip helps. And if a friend doesn’t take you up this time, keep offering. They will eventually.
Offer to go to doctor’s appointments, too, says Peter J. Flierl, a social worker from Geneva, N.Y., who works with the Y-Me National Breast Cancer Organization, a website and national hotline that provides support to 40,000 callers a year.
And it’s fine to cool your heels in the waiting room. It’s not what you do when you accompany someone to treatment, Flierl reports, but rather the act itself that speaks volumes. “It also gives you some sense of empowerment. You are more than a helpless spectator cursing the damned disease. You have joined the battle.”
Don’t: Take it personally if you email or call the person and they don’t call you back.
Chances are, says Susan Recine, “we’re busy, throwing up, feeling crappy or in chemo. I had someone come up months later, and say, ‘I called you, and didn’t call me back!’ ”
Recine says she also reserved particular ire for those friends who called to vent about their own problems. “I’d have people call with marriage problems, job problems, and you don’t want to hear about that; it’s just too petty. You want to say, ‘no matter what you’re going through, this is far worse.’ ”
Do: Ask around and find out what makes your friend smile.
“You can’t wait for your friend to tell you what to do,” Recine advises. She credits her mother, Joan Rizzi and her fiance, John Belloise, for keeping her spirits up with a constant supply of chocolate.
“I craved chocolate after each of my surgeries; I had such a sweet tooth and John always made sure I had some good chocolate,” she says. “So believe me, just stopping by and bringing a box of chocolates does help.”
Reif points to the colorful postcards sent by a friend as a total mood elevator. “She’d write these funny little stories on each one, like what we’d do at this particular place, have a margarita, go to a spa, and then she’d mail me one,” Reif says. “I looked foward to those cards every day. I was transported away from cancer and away from reality for a little while.”
Do: Start a food chain.
“That’s huge,” Susan Powers says. “When I was at my worst, people would show up at the house every night with a hot dinner. I had two chains going at the same time, at one point,” she says. “It was one less thing to worry about; I knew my kids were well fed and my husband didn’t have to worry about that, too.”
So that your chain doesn’t fall apart, or become a flood of food that goes uneaten, or worse, thrown out, it’s best to organize, says Ghita Worchester, of CaringBridge, a site that allows users to share news, personal messages and contact information with others who want to support a person or family coping with illness or other health concerns.
Check to see whether there are any dietary requirements, both for the person undergoing treatement and their family, Powers adds. “Children may have specific food allergies or dislikes, and your friend’s sense of taste may have changed, too.”
Do: Offer to set up or monitor a Facebook page or blog with updates.
That way, your friend can reach out to people at his or her convenience, and generate support from friends and family members who don’t know when to call or what to say.
Don’t: Minimize the side effects of cancer treatment by saying, “Your hair will grow back” or, “I forget things, and I haven’t even had chemo.”
If you don’t know what to say, ask a question, and let the patient talk. “It’s almost never helpful to tell stories about your own experiences or offer advice on the health issues,” says Josephine Hicks in her book, “If There’s Anything I Can Do: What You Can Do When Serious Illness Strikes,” (Amazon.com)
That hit home for Tarrytown’s Recine, who was diagnosed with a ductal carcinoma after a routine mammogram in December 2010. “I was very very lucky,” she says. “I went for a mamogram and it was caught early.”
For her, the worst news was hearing she would need a bilateral masectomy. “Your whole life changes in a second. In one second, your womanhood, your femininity is changed,” so when friends joked about how great she would look after the procedure, it was especially hurtful, she says.
“They said, ‘Think how good you’ll look in a bathing suit after this.’ People had no idea about how excruciating the process of reconstruction can be,” she says. “I was in the hospital more with problems related to that than I was with my cancer treatment.”
Don’t: Start crying and talking about the people you know who’ve died from the disease, forcing the survivor to comfort you.
“People always want to tell you about their friends dying,” Powers says. “They’d run through a list of all the people they knew with breast cancer and say, ‘Well, my friend was stage IV, and my friend had this, and she’s dead.’ I guess the thought process was supposed to be positive; in other words, I was still alive,” Power says.
Do: Create a ritual.
Whether it’s a weekly date to watch television reruns or a trip to Carvel, it’s nice to have special time or a ritual that takes your mind off the current reality, says Reif, who got a lot of joy from watching “The Tonight Show” and “The Sopranos” with her dad. Even after she moved back into her own home after treatment, she would come back on Sunday nights to watch “The Sopranos” and would check in with him in the morning regarding Jay Leno’s previous night’s guests.
Don’t: Lose interest.
Many friends and family members rush to offer support upon hearing news of a cancer diagnosis — but then the calls subside, even as the cancer treatment stretches on, says peer counselors at Y-Me National Breast Cancer Organization. Stay connected for the long haul, checking in with periodic phone calls or emails to see how she’s doing or just to talk about something normal.
“You need people who remain part of your life,” Recine says. “I had friends, who after awhile, would have an excuse for not coming up to see me in the hospital, they were working late, their kids were in college. You learn how to leave them out of your life.”
Do: Urge your friend to seek support.
Powers says her family, who mostly lived near her in Blauvelt, was invaluable helping her get through her battle, but there were times when she wanted to get outside that circle and talk to others who felt what she felt.
Problem was, she couldn’t find a support group. So she started her own. The St. Catherine’s Support Group meets on the third Tuesday of every month.
“I had it up and running in three months,” Power says. “I found a place, made a flier, and people found their way. I get one new person a week. I made it my mission that there won’t be a woman without someplace to turn for help.” (For information, call 845-359-1095.)
Do: Tell your friend or loved one she is awesome. “My mother told me I was awesome every day,” Reif says.
Daniel Powers did the same for his wife, who says “He was my rock. He did everything as I was falling apart, and he did it knowing he might lose his best friend.”
Recine credits her two sons, her mom and her fiance John for letting her know she was loved every day. “You hear that word, cancer, and you just want things to move fast. You can’t wait, you think it’s the end of your life,” Recine says, remembering the day of her diagnosis. “I had promised to take my son out for a few drinks on his 21st birthday. We were going to see a band at Pete’s Saloon. I cried all day long, but I said, ‘I am not going to miss this, and I didn’t.’ ”
Susan Power says her best advice is to reach out, whether you are a breast cancer patient or someone supporting one.
“It’s hard. You might find something, and not know you need it right now. It was 6 1/2 years until I was ready to go out and look for help. I couldn’t do it before, but now I’m out there letting other women cry on my shoulder.