Members of BCRF’s social media communities share what helps (and what doesn’t)
Caring for a loved one with breast cancer can be very rewarding, but it’s also a complicated and delicate job. You love the person dearly, so naturally you want to say and do all the right things to help them feel supported during such a difficult time. But try as you might to understand and anticipate their needs and emotions, mistakes will happen. The reality is, you can’t know or understand everything they’re experiencing on their breast cancer journey.
To help you feel more confident in your role as caregiver, we asked both patients and caregivers from the BCRF Facebook and Instagram communities to share the actions and comments that help breast cancer patients and thrivers feel supported and understood — as well as what doesn’t help. Of course, while people will want different things from their caregiver, the tips below are good general guidelines.
Be present
“Listen, give hugs, and reassure the patient that you’re not going anywhere. Tell them you’ll get through this fight together.” –bitzlg
“Patients need more than just logistical support like food and transportation. We need the physical comfort of you being still and close, doing nothing. Talking can be exhausting. Just sharing the space really helps.” –ronirivera
“Listen to the patient. We don’t want advice, we don’t want statistics, and we don’t want to hear about someone else you know who has cancer. This is our journey. Just be supportive and listen.” –prestimary
Think small
“I really appreciated help with the little things. They add up quickly and become big things that many breast cancer patients just don’t have the energy to do.” –ohheybreastie
“My best piece of advice from being a caregiver is to take each day as it comes. This approach helps you manage the work of helping someone recover — whether it’s giving medications, emptying drains, etc. — while also taking care of yourself so you can be at your best for your loved one.” –abikloosterman
“Remind the person that they can still have moments of fun as they go through the hard times of diagnosis and treatment. Encourage doing small things together that bring joy, such as a walk in a favorite park or watching a special TV show together at night — anything that gives the person something to look forward to that isn’t cancer-related! The thought of continuing to have happy moments really helped me get through the worst parts of treatment.” –nfoschino
“Try to read the person’s mood regarding visitors. Some days you want to see people, others you need to be alone. It’s okay for a caregiver to answer the door and say, “Thank you so much for coming, but let’s connect another time” to visitors if it’s not a good day.” –meleagbrett
“Ask the person how they’re feeling, surprise them with a good book or a treat, and continue to be positive.” –dinacarlsonking
Remind them of who they are
“Sometimes not talking or doing anything speaks volumes. My husband and my mom were my caregivers when I had breast cancer, and they let me live my normal life as much as possible. Those are the things that meant the most to me.” –tsbr2010
“Understand that there’s more on the person’s plate than cancer, like running a business, enjoying hobbies, spending time with family, etc. Also, avoid falling into ESPN-commentator mode anytime they do something, like saying, “You must be so tired because of the meds!” after they wake up from a nap. Say something neutral or don’t comment at all.” –ruralgoneurban
“Let the person know you truly see them — you see how they’ve changed, and you still love the new them.” –icon_lon
Make room for their feelings
“Understand that the person’s emotions aren’t linear. One day, or even a string of days, might be okay for them, and the next day they may struggle emotionally. When this happens, allow them to sit in the struggle. Don’t try to encourage them to be positive or focus on the good. All of us need to process the hard times and give ourselves space so we can heal.” –laura_lo_obert
“Be willing to have tough conversations. It might be hard to hear about pain and death and fear when you’re taking care of a loved one, but you might be the only one they feel comfortable with to share those emotions. Listen to the tough stuff — even if it’s uncomfortable — and be their rock and safe place when you can.” –Taylor Porter via Facebook
“Allow the person to feel their feelings. There were times during my breast cancer journey when I couldn’t articulate my emotions. If I cried, the response was often, ‘Don’t cry. You are strong.’ I know my caregivers meant well, but I just wanted to cry because my words weren’t flowing as easily as my tears.” –ab_sunshine
It’s not over just because treatment is
“The journey can be long. Continue to provide just as much support throughout the entire journey as you gave when the person was first diagnosed.” –emilyjule87
“Tell the patient that they deserve to take time to rest and heal, especially after surgery. There’s no rush to recover — you’ll be there to take care of them.” –christineewalsh
“Keep in mind that the breast cancer journey doesn’t end when active treatment is completed. The after-care part is scary and confusing, but many just assume the person is fine now.” –ciaolobster
“Just because the person is done with active treatment doesn’t mean them are “done” or over the hard part. Sometimes after the active treatment stop is even harder. Preventative treatment is also extremely taxing mentally and physically.” –oliviacgagne
Plus: some important don’ts
“Don’t say things like ‘You don’t look like you have cancer.’ There’s a common misconception that all people with cancer have hair loss due to chemotherapy or that we all look sickly. While this may be true for many cancer patients, it’s not true for all. Some chemo treatments don’t, in fact, cause hair loss. And some treatments have side effects that are only noticeable to the person going through it. Generalizing or commenting on appearances — or even sounding surprised that we still look the same as usual — can ‘other’ us and make us feel like an outlier.” –emmylou129
“Don’t keeping asking how you can help. Just make the meal, do the laundry, pick up the kids, empty the dishwasher, etc.” –Margo Stewart via Facebook
“Don’t propose alternative treatments you may have seen or heard about if the person didn’t request it. There is a lot of health misinformation on the internet, and you shouldn’t propose anything that isn’t scientifically proven, unless requested.” –meliegut
“You don’t need to sugarcoat everything. Tell the person what they’re really looking at, even if it’s scary.” –samanthaminer
“Please don’t tell the person that you understand what they’re going through.” –beth_sefton
“Don’t make the person feel bad if they’re having a bad day.” –funkyk84
