An oncology nurse offers people tips on how to find the courage and be better advocates to their loved ones who may be receiving treatment for cancer.
Confronting a cancer diagnosis is one of the most frightening and challenging experiences one can endure. Often, knowing how to help or what to say to a loved one who finds themselves receiving treatment for cancer does not feel natural or intuitive.
Avoidance of support because of this discomfort may result in isolation and loneliness on both sides. Having concrete information on how to begin, and a better understanding of the role can make this journey less daunting.
The real power in acting as an advocate lies in finding the courage that is within us all to see the person, not the disease, and look past what they have been diagnosed with. Recognizing that we all have the capacity to help in some form is a good start. Seeing that the humanity in the person suffering is what unites us can forge bonds that enable us to truly help the other.
Below is a list compiled from the experiences of a pediatric oncology nurse having been in this role many times as a professional, as well as personally with her sister. These suggestions can help the advocate to be more effective in their role.
Understand how chemotherapy affects the body
Healthy cells in the body have a life cycle; they are created, serve their purpose and die, and are replaced with new cells. Cancer cells grow out of control and take up the space of normal cells, block the body from functioning normally, and need to be destroyed or removed. Chemotherapy destroys cancer cells, but also destroys healthy cells in this process. With some chemotherapy regimens the patient can be tired and more vulnerable to illness until the body recovers.
Things to remember with certain types of chemotherapy:
Moreover, there are certain things you could do to help:
And remember, chemotherapy can cause unpleasant changes to smell and taste. If sending a gift, avoid scented lotions, flowers or food; consider a book or magazine or tea bags instead
Words are powerful
When unsure what to say to your loved one, follow their lead. If they are feeling hopeful, your role as an advocate is to remain positive. If they are fearful, that opens a different conversation. Asking, “How is that for you?”, or “What was the worst part of today?” are helpful as open-ended questions.
It’s important for you to recognize and use the word cancer. Don’t forget to remind them they are brave. But also remember to express concern, sympathy and love. Saying, “I’m so sorry this has happened to you” can help.
However, there are time words aren’t needed. When this happens, just be present and listen.
Wait to be asked before giving advice
The art of advocating is knowing when to push the conversation to help a loved one recognize something that is affecting their well-being. If a call to the doctor seems warranted in the presence of a fever or illness, try posing the concern with a question. “Did your doctor say to call them if you have a fever?”
Practice good self care
Being an advocate requires tremendous courage. Watching a loved one suffer, being unable to stop the distress, and fearing you may lose them is overwhelming. It is common to lose sight of one’s own needs.
I suggest managing your feelings in a separate space. Whether you choose a family member, a therapist or a friend is a personal choice, but it is very important for your well-being. Be sure to rest, eat and ensure adequate hydration.
And, if you think you have said the “wrong thing,” remember kindness is what matters most and will be remembered long after the therapy is completed.
Be familiar with resources
Advocates can either visit Cancer.gov or Cancer.org – the latter of which has a live chat feature with resources and education, aids with transportation, local support groups, dietary choices and many other topics.
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