Understanding the Cancer Journey

A primary caregiver’s role in the life of a cancer patient is very complex. Throughout your loved one’s cancer journey, you may experience strong emotional reactions to the ups and downs along the way, as if you and the person with cancer are interconnected. In fact, people with cancer and their caregivers often experience similar levels of distress and depression. In other words, you and your loved one will influence each other’s feelings during the journey. But the complexity of this relationship doesn’t end there—as primary caregiver, you will fill a variety of roles for your loved one, in both practical and emotional respects.

Multiple roles as a caregiver

You are likely to play many roles as a caregiver, including but not limited to:

  • Helping your friend or family member with daily errands and tasks such as shopping, doing chores or providing transportation to medical appointments. One reason your loved one may need help completing daily tasks is cancer-related fatigue. Two of the three main treatments for head and cancer are radiation therapy and chemoradiation therapy. 70 to 80 percent of people treated with radiation or chemoradiation therapy experience fatigue, and for one in three people the fatigue is so severe that daily tasks and routines cannot be completed. Therefore, you may be called upon to assist your loved one with these errands and tasks.
  • Providing medical care, ranging from administering oral medication to monitoring for side effects.
  • Providing administrative support, such as helping your family member or friend learn more about insurance reimbursement or identifying resources for additional financial support as needed.
  • Playing the role of counselor by providing emotional support and checking in with the patient to assess whether there are additional psychological needs that require the assistance of a mental health specialist. A patient’s level of anxiety and depression, in addition to the proportion of people who experience these symptoms, varies during the cancer journey. However, among people who have cancer, up to 27 percent may experience depression, and 27 percent may experience anxiety during some phase of the cancer journey.
  • Making medical decisions. You may collaborate with your loved one to make treatment choices. If your loved one’s head and neck cancer is not curable, you may be called upon to make end-of-life medical decisions for your loved one.
  • Problem solving. Your loved one’s cancer may pose challenges you have never encountered (e.g., how to obtain time off from work), which may require that you do research, explore options and make decisions with or for your loved one.
  • Adopting new roles as the need emerges. For example, if your loved one develops severe cancer-related fatigue, you may need to assume childcare responsibilities.
It does get better, and that’s what people need to know. It does get better.Jason S. (tonsil cancer survivor)