A diagnosis of stage IV or metastatic breast cancer can send shockwaves through the life of the person diagnosed. Suddenly, the landscape of future treatments and even future goals can look different than it did before this news arrived. And of course, the person who has been diagnosed is far from the only one affected. All who care about this person — partners and spouses, relatives, friends, coworkers — often find themselves united by one primary question: “How can I help?”
Supporting your loved one who is living with metastatic breast cancer is, of course, the main priority. But in order to provide the best help possible, that person’s caregivers and supporters will likely need some guidance themselves. Here, members of the Community at Breastcancer.org who are living with stage IV cancer, along with some of their caregivers, offer six key pieces of advice — both emotional and practical — for helping people who live with this disease as they navigate the road ahead.
1. Delegate tasks
No one can “do it all” in regard to caregiving. If you are a patient’s primary caregiver, be sure to call upon others who are available for assistance that they can offer, such as with meals, rides, errands, or household help. Be clear and detailed in your requests. Creating schedules to show the times at which people are free and what they’re able to do can be useful. “There are so many people who would love to help,” says one member of our Community. “They just may need specific instruction or direction” from you.
Community member exbrnxgrl recalls the kinds of help she received after her recovery from a surgery: “My school community set up meal deliveries, which fed not only me but anyone who helped care for me. After my first few days at home, when it was clear that I was doing well, family went back to work. They made sure that I had food and drinks within easy reach and came by each evening for dinner, to help with chores and to keep me company.”
2. Take care of yourself, too
Caretaking can be physically and emotionally demanding. Make sure you’re paying attention to your own needs, so you can better help your loved one. “You may need help, counseling, sleeping pills, etc.,” says Community member pajim. “Do not assume that just because you’re not the one who’s ill, you are 'fine.' Ask for help when you need it.”
Community member PatrickG, whose wife received a stage IV diagnosis, needed emotional support — and found it in our Community at Breastcancer.org. “We have to sit there and watch as [they] fight,” he says. “We are their support, the ones who take care of them and keep them comfortable and above all love them, but we can't fight for them, and that I think is the hardest part.”
Another Community member, who is living with metastatic breast cancer, sums up the issue for caregivers this way: “How you are doing should never be overlooked. Your feelings are just as valid as ours.”
3. Be proactive
Though it can be difficult to know what to prepare for, there are some guidelines that can help. For example, It’s useful to take notes at doctors’ appointments, so everyone can remember what was said. Come prepared with questions to ask; also make sure you’re able to tell the doctor which medications the person diagnosed is taking.
Make a list of items that will be needed at a given time or tasks your loved one might need help with. For example, one Community member mentions bringing a pillow to place between a woman’s chest and seatbelt when she is returning home from the hospital after a mastectomy. Another recalls needing post-surgery assistance with washing her hair. “Comfort items” from home can ease the burden of a hospital stay; and if prescription medications are being taken at home, make sure they’re present at the hospital, too.
These kinds of preparations can help things go smoothly and can bring a greater sense of calm and control to everyone involved.
4. Make room for your loved one’s emotions, whatever they are
People with stage IV cancer want to know that they can express what they’re feeling without judgment. “Prepare for moodiness or anger or tears out of nowhere, or all of these things!” says one Community member. “I’d be in a great mood one day and then just so low the next. And sometimes I just want to share all my fears, without being told ‘It will be OK.’ That may sound weird, but at times you just want to rage.”
Some Community members mention wanting a caregiver’s assistance with emotionally draining situations. If you’re able to be the “point person” for someone who has metastatic breast cancer and who’s facing a potentially exhausting or frustrating encounter, that kind of help will frequently be welcome — and will allow them to preserve their energy for the things they want to prioritize.
5. Help keep communication on track
Of course, a caregiver’s emotional communication with the person who has cancer should be as open as possible — but there are also logistical issues to address. How is the person with cancer choosing to communicate with the medical team? Some doctors make their personal phone numbers available; these should be organized and the circumstances under which to use them understood. Will an online patient portal be used for scheduling appointments or accessing information? If so, make sure to keep track of the passwords.
In regard to communicating easily with all caregivers involved, sites such as CaringBridge can be very useful. A site page — updated by the person with cancer or by designated caregivers — can be used practically, to convey information or ask for help, and also as a type of online journal. Such a page also can lighten everyone’s load by avoiding the need to relay the same updates repeatedly.
6. Life goes on
Much may be changing, but a stage IV diagnosis doesn’t block out the personality of the one who has received it. By all means, continue to include her or him in non-cancer events and discussions, as you always have. Take advantage of times when your loved one is feeling well to pursue enjoyable or important activities, from volunteering for a valued cause to taking a dreamed-of vacation. Life is to be lived, as fully as possible. And after all, notes a Community member, “we get tired of cancer talk, too.”
Join the discussion in our Community forum for family and caregivers of loved ones with a stage IV diagnosis.
Written by: Pamela Rafalow Grossman