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Jennifer Christensen, LCSW, OSW-C is a clinical social worker in the Patient and Family Support Program at Cedars-Sinai Samuel Oschin Cancer Center in Los Angeles, California. KCA Ambassador Annamarya Scaccia, who was diagnosed with chromophobe renal cell carcinoma in 2020, spoke with Christensen about navigating caregiving—from what it means to support someone with cancer to the importance of practicing self-care.

Annamarya Scaccia: What is one of the first things someone should do when they find out their loved one has cancer?

Jennifer Christensen: Build up your own support system. Determine what duties or tasks you are able to handle and take on and ask for help with other tasks. Reach out to other family members, friends, church communities, community support groups (often free of charge). You can also connect with an oncology social worker or nurse navigator within your loved one’s care team for additional guidance and support.

AS: How is being a caregiver to someone with cancer different than other types of caregiving?

JC: Dealing with cancer and navigating the health care system can be a full-time job. Depending on the type of treatment someone receives, the number of medical appointments can be overwhelming. You are often learning a new world of medical language as well, making many concepts foreign and hard to understand. Add to that managing side effects from treatment, and it can be easy to be consumed with anything cancer related. 

AS: What are some unique needs and concerns that a person living with cancer has that a caregiver would have to keep in mind?

JC: While we as humans know, at a certain level, that we will all face death, being diagnosed with a life-threatening illness such as cancer can really bring that fact to the forefront, no matter the prognosis. Many patients will have existential questions that they may want to explore further.

AS: There are so many ways someone can show up as a caregiver to a person with cancer. What are some ways to support someone living with cancer—at the time of diagnosis, during treatment, into recovery, and beyond?

JC: Learn to take the cues from the individual living with cancer; are there certain ways that they particularly feel supported? Do they want to talk about their experience, or do they want to take a break from anything cancer-related and enjoy a fun evening? Communication can be key as well—let them know if you want to be helping more and discuss with them what that could look like.

AS: What is the most important thing for any caregiver to remember while supporting their loved one through their cancer journey?

JC: Remember to treat their loved one as the person and individual they are, with all of their unique characteristics and interests, rather that someone with cancer. Remember to celebrate the good, along with holding space for the bad.

AS: Talk to any person with cancer, and you’ll likely hear that they’ve heard many dismissive comments about their diagnosis—“You’re a warrior,” “You’re lucky it was caught early,” “At least you have two kidneys.” What are some things caregivers should avoid saying when supporting a person living with cancer, at any point in the journey?

JC: Toxic Positivity is something that we often see in the oncology world, which is this idea that as long as you are thinking positively, then good outcomes will happen, or conversely, if you are not thinking positively enough, then you are not doing all that you can to “fight” the cancer. Going through a cancer diagnosis is one of the most difficult things that someone can face in their life. There is no “one-size-fits-all” approach to coping with a diagnosis. Remember that it is okay to not be okay. You can sit with your loved ones when they are expressing their fears, sadness, anxiety, and other emotions that are often labeled as negative. You do not need to offer a solution; there sometimes is no solution. However, being heard can be a powerful feeling to someone diagnosed with cancer.

AS: Same thing with actions. Sometimes, while we may mean well, we can hurt others. What are some things a caregiver should avoid doing?

JC: One thing I often hear from patients is a frustration that caregivers will automatically start doing tasks around the house, thinking that they are relieving someone of an extra burden.  Cancer comes with many losses, particularly feeling as though one is less independent than before. Caregivers can speak with their loved ones before taking on specific duties to see if that would be welcomed. Many patients prefer to keep doing some of the tasks they previously did because it provides a sense of normalcy, and also is one less thing that is taken away from them.

AS: For the person living with cancer, what is the most effective way to express their needs and set boundaries with their caregiver?

JC: Many patients do not want to talk about their diagnosis and their experience all the time, while caregivers and loved ones will want to ask, not wanting to shy away from difficult conversations and wanting to be supportive.  One way to help balance this is to set up a window of time when the caregiver can ask their loved ones those questions of “How are you feeling?”, “How can I best support you right now?”, etc. This allows for discussing those more delicate topics while also not having them consume someone’s life. After that set period of time, you can go back to discussing “normal life” topics and other things that people enjoy and make them who they are.

AS: There are so many ups and downs to the cancer journey. How can the caregiver and the person living with cancer navigate the emotional waves of the relationship?

JC: One helpful way in navigating emotional waves of navigating through a cancer experience is to connect with a licensed mental health professional, such as Licensed Clinical Social Worker or Licensed Marriage and Family Therapist, or a cancer support group.

AS: Caregiving itself is also a tough journey. What are some ways caregivers can take care of themselves?

JC: Taking care of oneself can look different to each person. Some ways to take care of yourself is to carve out time that is just for you, continue to engage in activities that you enjoy, spend time with friends and family, meditate, exercise, keep up on your own medical appointments, spend time in nature, or spend time with pets. Try new things and have a variety of ways to care for yourself.

AS: Why is it important for a caregiver to practice self-care and find support too?

JC: Whenever we are caring for another individual, particularly those diagnosed with a serious illness, caregivers are at risk of burnout or compassion fatigue.  This can lead to lower quality of life for not only a patient, but a caregiver as well.  It is important to practice self-care and have your own support, as this will help to prevent burnout, allow you to continue to provide care for your loved one, and most importantly, let you continue being yourself. Caregivers have their own identities, interests, and values that can sometimes be overshadowed when caring for another individual. It is important to engage in the things you love doing and live your life as well.

This interview was edited for clarity and length.

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