The Caregivers’ Cancer Journey

As patients with cancer complete their active treatment phase, many are faced with new and often unanticipated challenges as they transition into survivorship. Many are managing ongoing or long-term physical side effects of treatment, experiencing anxiety about disease recurrence, navigating sometimes bumpy returns to work or school, and digesting the reality of the cancer diagnosis itself — the full scope of which can have emotional reverberations impacting life goals and sense of purpose. It is typically a period of great change for the cancer survivor.¹ But what about that person’s loved ones? How do caregivers experience survivorship with its many challenges and unknowns?

Caregiving takes on many forms and is frequently provided by a number of people who surround the patient, including family members, friends, and professionals on the healthcare team. There is no one-size-fits-all definition of what the caregiver role entails. It can include practical duties such as escorting the patient to medical appointments or providing guidance in navigating the complex healthcare system, and it can be more emotional in nature, as in offering a listening ear when needed. It might be a partner taking on a larger portion of domestic duties for a period of time or a friend offering much-appreciated humor and distraction on a day when the patient’s spirits are low. But no matter the specifics, the common thread is the often vital part that caregivers play in supporting the patient’s focus on their health and recovery. In a sense, caregivers walk alongside the patient in their cancer journey and as the patient must adjust to a new normal in survivorship, their caregivers are faced with transitional challenges as well.

Aftereffects of the disease and treatment regimen may leave many survivors with physical adverse effects that can be long-term. Such changes can be cognitive, as with chemobrain, or physical, such as neuropathy or fatigue, or even spiritual, as survivors reevaluate what brings joy and meaning to their lives. Whether such changes prove temporary or permanent, the survivor’s functioning at work and at home may be impacted significantly. They may need to redefine the roles they play in these spaces and what those roles can reasonably entail. By extension, their loved ones must also make adjustments, perhaps shouldering the bulk of responsibility in some areas or even taking on entirely new roles altogether.

Although many caregivers and loved ones are certainly willing to make these changes, with change can come a sense of loss. They may quietly grieve for the time before cancer entered their lives and disrupted the routines, structures, and lifestyle they had put in place. Further complicating this sense of loss, may be feelings of guilt or shame for even experiencing sadness during a time that was anticipated to be celebratory. After all, the cancer is out of the picture and everyone should feel grateful for that, right? Any tension between expected vs experienced reactions may cause caregivers additional pain and confusion.