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:
Take care of yourself. You must stay healthy so you can be well enough to care for your loved one.
2. Don’t lose your sense of humor. Watch a funny movie together- to give you both a break from stress and anxiety, even if it is for just a little while. The old adage “laughter is the medicine” still applies.
Seen an oncological massage for your loved one; have a message yourself as well - some cancer treatment hospitals offer oncology massages.
Stay connected with friends. They can be source of support and strength.
Keep notes ( a journal perhaps) of your loved one’s treatments and appointments. A medical appointment notebook, with pocket tabs for all tests, lab work, reports, notes, questions to ask, helps organization and easy reference for the preparation for ongoing appointments.
The National Cancer Institute has resource information for caregivers, “Caring for the Caregivers.” Go to: http://www.cancer.gov/publications/patient-education/caring-for-thecaregiver
