Finding yourself in Cancer World happens very suddenly. The doctor -- or someone close to you -- tells you it's cancer, and all of a sudden everything changes. How are you supposed to know, instantly, how to be supportive to a woman going through something this terrifying?
I thought the best way to offer help to the husbands, other family members, partners, and friends who suddenly find themselves thrust into this role was to ask the cancer patients themselves what was most -- and least -- helpful. Here are seven things women with breast cancer and their partners have discovered about what worked best when it came to supporting them through this ordeal.
1. Support whatever she decides.
Breast cancer involves endless decisions: lumpectomy and radiation or mastectomy? Some women elect to have a bilateral mastectomy (both breasts removed), so they feel safer. These decisions can be really scary for a woman to talk to her partner and friends about. It may sound like she's asking for advice, and you may feel underqualified to give it.
Don't worry -- no one expects you to be a medical expert. Your role is to act as a sounding board. Listen to everything she says without judgment, letting her bounce her thoughts off of you. Help her weigh the pros and cons, but let her make the decisions. And make it clear you'll be behind her 100 percent. Try to listen for the fears and other emotions underlying her decision, and offer as much emotional reassurance as you can.
This is particularly important when it comes to the emotional flashpoint of mastectomy. Many women resist mastectomy even when the doctor advises it, because they fear their partner will find them less attractive. If you're that partner, this is where you come in. Let her know what you really care about: her safety and health, and reassure her that her fears are unfounded. Tell her that her health is paramount and you feel strongly that she not take unnecessary risks where her life and future are concerned.
Forty-five-year-old Sandra Joly of Cutler Bay, Florida chose to undergo a mastectomy after being diagnosed with breast cancer at 44. She said the toughest part of the mastectomy for her was a painful post-surgery recovery period. Help from her mother, an in-home nurse and financial and emotional support from the Alliance in Reconstructive Surgery (AIRS) Foundation were instrumental in her healing process.
"It was amazing to know that there are people who care and understand, and I didn't feel alone," said Joly.
2. Don't let her go to appointments alone.
No matter how self-reliant or brave she tries to be, no matter how many times she says, "No, you don't need to bother," don't be conned. Going to a cancer appointment alone is no fun. "I told my wife early on that this condition may be in her body, but that it's really something that affects both of us -- she's not going to be going through this alone," one husband told me. "I have been to every single appointment with every doctor with her, just so that I can help with the decision making. Our wives are understandably freaked out by the diagnosis, and we need to be there for reassurance and support."
Joly said having her loved ones there for her doctor's appointments, chemotherapy and surgeries was an important source of support for her throughout the treatment process.
"They were supportive and always kept positive," she said.
3. Talk to her openly about her breasts.
Let's be honest: Breasts play a big role in our sex lives, and the loss of one or both breasts can deeply threaten a woman's sense of sexuality. If your wife or partner decides to have a mastectomy or double mastectomy, chances are she's terrified about how you'll react to her changed body. You, and only you, can reassure her that you'll still find her attractive. Trust me on this, guys, you may think it's obvious that your loved one's health is all that really matters, but she needs to hear it -- and will probably need to keep hearing it many, many times over the next few years.
If it's a friend you're supporting, be aware that she needs your reassurance in terms of her looks, her outward shape, and -- if she's single -- her future dating potential. As one woman put it, "Even when you know in your heart that a bilateral mastectomy is the thing to do, there's still the shock and maybe a little anger at what it looks like when you first take the bandages off. Be there to listen or hug her when that time comes."
This is a situation where anticipation may well be worse than reality; things usually get better once time begins its healing action. Your job is to help time along by making her feel loved and sexy, even when you're both trying to get used to the scars.
4. Anticipate and help
Anticipate when your loved one with breast cancer can't do something on her own and help, or change things so she can do them herself.
"After surgery, I couldn't lift my arms for a long time, so I couldn't reach anything in high cupboards," a friend who's a breast cancer survivor told me. "I'm very independent, so it really bothered me to ask for help. My friends moved everything down onto lower shelves so I could reach things myself. They put my favorite shoes by the door. They set up a table by the bed, so I could reach everything from there. It made such a big difference."
5. Function as the forward guard.
Women tend to be the communicators in their families, fielding phone calls and e-mails, responding to invitations and inquiries. A cancer diagnosis typically triggers an even greater need for communication; it's natural for friends and families to call, e-mail, and request Facebook updates, asking how the cancer patient is doing. And it's all too common for a woman battling cancer to get sucked into taking care of everyone else's reactions when they need to focus on taking care of themselves. One thing practically every breast cancer patient I spoke with said, "I spent too much time taking care of everyone else's feelings and not enough time focusing on my own."
This is where a partner or friend can step in as gatekeeper. Think of yourself in the role of a celebrity handler; it's your job to create a buffer zone of peace and quiet around your loved one. "I've been trying to guard her from too much information and from an overwhelming number of 'how are you' and 'be strong' e-mails," said one husband. "She loves all the notes and e-mails -- but she just can't stand to cry even once more from the outpouring of love and support, so I read them to her and answer them for her."
6. Advocate and hang in there.
Cancer treatment can involve many unpleasant side effects. And sometimes, sadly, these side effects are more unpleasant than they need to be. Yet, for some reason, it's often difficult for cancer patients to get their medical teams to take side effects like nausea, nerve damage, pain, and fatigue as seriously as they should. Many cancer patients encounter a blasé "you'll get through it eventually" attitude when they try to get help, perhaps because doctors and nurses have seen it all before and tend to focus more on big-picture issues, like survival.
But when a cancer patient is too exhausted to get out of bed, too sick to eat, or can't walk due to nerve pain or blisters, it's time to get help. And it can require a fair degree of assertiveness to get that help. Your job? You're the advocate, the fierce, protective papa bear. Don't let the nurse or doctor off the phone until they've answered all your questions and suggested concrete solutions. Your weapons? Lots of questions that begin with "Isn't there something available for . . . " and "What can we do about . . . "
7. Don't expect everything to be fine right away.
Even the "well-adjusted" cancer patient who thinks she's doing great is going to have some really tough days. And delayed reactions are common. Many women steel themselves to handle hair loss and feel strong -- until they first try on a wig or lose their eyebrows. One woman I know told me she thought she was fine with losing her breast until one night, months after surgery, she dreamed she had her old body back and woke in tears, then spent weeks in a deep depression.
Hang in there, for as long as it takes. Help her choose pretty head scarves, buy her some new eye makeup, reassure her that flat is sexy, tell her how beautiful she looks -- over and over again, year after year.