Caregivers are the “first responders” to what it takes to keep “their patient” in a positive emotional, and physical place to continue the treatment journey in the best possible way, for the best possible outcome. It takes courage and strength to overcome the fear of uncertainty and the unknown relative to a rare disease/rare cancer — for both patient and caregiver.
Caregivers have a role in the patient’s self-advocacy efforts during oncology appointments. It is important for a caregiver to be well informed about their loved one’s type of cancer, cutting edge research information, treatment options currently available and on the horizon.
Strength and courage are the keys to the level of support needed and what the patient/loved one counts on to help them get through the difficult phases of the cancer journey.
Advice to caregivers in the rare disease / rare cancer journey: