So, your friend endured any number of treatments: chemotherapy, lumpectomy or mastectomy, possibly reconstruction, radiation therapy… and then when scans were done, instead of hearing the magical words “remission” or “cured,” your friend heard, “your cancer has metastasized to the…” (usually the bones, liver, brain, spine, or lungs). Now your friend, instead of “beating cancer,” has received news that is terrifying. Sometimes this happens years later (recurrent breast cancer), and sometimes it happens at the original diagnosis (called “de novo”), and sometimes–like in my case–it happens right at what was supposed to be the end of “one horrible chapter in an otherwise healthy life,” right when I was supposed to hear “remission.” So what comes next?
I was diagnosed with inflammatory breast cancer (an extremely rare and aggressive form of breast cancer that accounts for just about 1% of cases) in October 2015, and am so fortunate to have had a huge community of friends, family, and acquaintances who have supported me through endless rounds of chemotherapy, a unilateral mastectomy and lymph node removal, thirty rounds of radiation therapy, more chemo, and reconstruction surgery. We pink-ribboned everything, my friends wore pink on treatment days and posted their photos on Facebook to encourage me, and really believed at every step that I would beat this thing. And then it spread to my liver, and the game changed–while not hopeless, I am at best living with a chronic disease, and the statistics suggest that the median survival rate for MBC patients is three years. I am determined to defy those odds and I hope your friend will, too, but a shockingly low percentage of funds raised by famous breast cancer charities goes to stage IV research, hence our common hashtag, #stageIVdeservesmore.
Here are some ways my friends and family have continued to support me that I hope will help you to encourage your friend:
Change What You Ask
Instead of “How are you feeling?” or “How is it going?” try “What have you been up to?” That way, if your friend doesn’t want to speak immediately about illness, there’s an opportunity to talk about other things.
Also, while the phrase, “You look great!” can be encouraging, it can also be frustrating–we might not feel very good and our bodies have often become barely recognizable to ourselves. We know that we don’t “look great,” even if it is a healthy day. We look like we have a disease. Instead, try complimenting something specific, like “I love your shirt!” or “It’s nice to see your smile,” or “your eyes look really bright today.”
Send Little Notes or Gifts
The “short, horrible chapter” that my breast surgeon talked about has now turned into Part II of my life’s novel. As such, ongoing encouragement is really helpful. My friends and acquaintances have dropped by little cards and gifts that mean so much–a new water bottle, a notebook, novels they enjoyed, an iTunes giftcard for a new movie to watch at chemo, hats and scarves, essential oils, and so on. Some who have known me a while have given meaningful gifts that have nothing to do with cancer but appeal to the other sides of my life: a superhero action figure for my desk, a Disney t-shirt, Harry Potter pins, a crocheted cupcake–these things remind me that I am more than my disease and that there are parts of my personality from “before” that I can still find. Funny cards, thoughtful cards, a quick postcard with a poem–all have meant so much and remind me of all that I fight for.
Be Sensitive to Pink
Some women (and remember that men can get breast cancer, too) develop a real aversion to the “pink ribbon” after MBC diagnosis. I still wear all of my pink bracelets and shirts and take it as an opportunity to start conversation, but ask your friend before buying something pink. Again, most of the major charities do not currently devote significant funding to curing advanced breast cancer and instead focus on early detection (which is good, too, but doesn’t help us).
If your friend is willing to talk about it, be sensitive to “battle language.” Some cancer patients embrace the “warrior” and “fight on” rhetoric that often accompanies cancer. Others don’t want to hear it once the cancer has advanced because they know that the inevitable sentence “lost her fight with breast cancer” is coming, likely in three years or fewer.
Donate to Metavivor in Your Friend’s Name
If you are able to donate, give to the research organization Metavivor, which is focusing all of its efforts on finding new treatments and a CURE for advanced breast cancer. If your friend has a GoFundMe page or other fundraising option, give to that, too. We are in for the long haul and there seem to be endless copays and prescriptions that really add up–often taking away from other things we want to budget for, like fun days doing non-cancer things.
Don’t Be Afraid to Complain
This seems odd, but hearing about the annoyances of your job or your kids or the broken shower help us feel a sense of normalcy. It’s ok to complain about everyday gripes and even health issues, and don’t feel the need to apologize for “comparing.” We know what we are going through, but it helps to know sometimes that other people’s lives aren’t perfect.
Go Out and Have Fun
If your friend is up to it, go to a movie or out to lunch or for a walk. Again, try to tap into and talk about the interests that your friend had “before”–it will feel good to remember the time when your friend didn’t have “cancer patient” at the top of her or his identity.
Reach Out Online, If That’s Your Thing
Some of my friends are incredibly talented in online encouragement, posting little memes or pictures, reposting reminders to my personal GoFundMe page so I don’t have to, sending me articles to read about non-cancer topics, and so on. We definitely don’t need the occasional articles that come up about how we could have prevented cancer if we didn’t eat _______ or how we can stop cancer by exercising more. Trust me, we see them anyway. Our doctors are informed and have treatments, advice, and solutions. What we need from our friends is love.
Offer to Bring Meals or Help Out
Instead of “Can I do anything?” ask, “When can I come over and fold laundry while we watch TV?” or “What night this week can I bring dinner over?” if you have the time and resources. Restaurant gift cards are good, too–ask what favorite restaurants your friend enjoys.
Above All: Stay in Contact
The hardest part is that this is now an endless battle. We will likely be doing chemotherapy or other treatments until we die–which I hope, for all of us with MBC, will not be three years from now but perhaps thirty-three years or more. I’m only forty, and I surely didn’t expect that my pharmacist at CVS would greet me by name or that my calendar would go from staff meetings to endless trips to the chemo clinic, physical therapy, and other doctors to manage the dozens of side effects that come with each treatment. Life has changed. It helps when our friends stay constant.
Jennifer Pust was diagnosed with inflammatory breast cancer in October of 2015, and it metastasized to her liver in October 2016.
Since then, she has undergone chemotherapy, surgeries, and different radiation protocols, all in hopes of returning fully to her life as a wife, mother of two young boys, Disneyland and Dodgers superfan, and full-time English teacher.
She lives in Santa Monica, California.
Hi Jennifer. My IBC diagnosis was May 2013. My recurrence was May 2016, in my lungs. I was just 37 when I got the stage 3b inflammatory breast cancer diagnosis. I’ll be sending happy thoughts for continuing to beat the odds.
Hi Jennifer, I was diagnosed with Stage 4 Inflammatory Breast Cancer from the start. I’m still fighting and enjoying my life and family 5 1/2 years later. Hang in there.