Mark is a retired freelance artist and illustrator who has created hundreds of works of art for books, magazines, greeting cards, websites and countless other publications over a long career. After retiring, he hoped to just live a simple life, maybe do volunteer work with his wife at some National Parks and continue to paint, sculpt, and do other creative works – but this time just for art’s sake. However, his wife received a BRCA2-associated cancer diagnosis that shattered that dream. Mark became his late wife’s caregiver as she struggled with metastatic triple-negative breast cancer and all the horrible side effects that come with treatment. In turn, he became a hereditary cancer awareness and prevention advocate. And since his daughter also carries the same germline BRCA2 mutation, he said that his advocacy means even more.
Having someone beside you to accompany you during doctor's visits to take notes or having someone to help you find the right specialist or even to just help research what treatment options are available can be incredibly helpful.
Having a patient advocate can be a lifeline when you are a patient with cancer or a cancer caregiver.
Navigating the health care system while you are being treated for cancer or as a caregiver under stress can be a nightmare. There is so much information that gets thrown at you by the doctors and insurance companies. And trying to get straight answers and/or advice can leave you exhausted and frustrated.
When my late wife fell because of a seizure caused by brain metastases, it resulted in a hematoma (a pool of mostly clotted blood that forms in the body). Along with her injuries came increasing bouts of aphasia (a condition that affects a person’s ability to speak and understand written language). Her sudden inability to effectively communicate left me completely in charge of managing her care.
I was fortunate that a family friend — who was a parent of one of my wife’s former 4th-grade students as well as a neighbor of ours — was a retired registered nurse just starting a patient advocacy service. Fortunate is an understatement.
After my wife’s fall there was just so much to deal with. It seemed like one crisis after another. I was overwhelmed and it seemed like I needed medical advice hourly. But calling the offices of the numerous doctors caring for her with questions got frustrating. I might as well have been talking to the food in my freezer — the people answering the phones were cold, didn’t seem to be listening, and never returned calls.
I’m not a doctor or nurse. I was just a frightened spouse in an intensely demanding full-time caregiving role that I unexpectedly had to assume. I badly needed help with all the challenges my wife’s cancer kept throwing at me. That is where our friend, Jan, helped. She seemed to know what numbers to call, who to talk to, and the right questions to ask, whether it was the front office staff, doctor, nurse, therapist, or insurance company.
Jan also helped me make sure I had a current list of all my wife’s medications readily available at home and a copy to take with me for the now frequent emergency room trips. She also made sure I had vital paperwork in order. That included medical and mental health Power of Attorney forms, health history, living will, and health insurance information and forms. All placed in a binder on top of the refrigerator where it could be easily accessed.
According to Jan, it would be ideal to have all cancer patients connected to a professional patient advocate. But availability and affordability can prevent that. She advises that if you can’t find or afford a professional medical advocate, ask a trusted family member or friend to see if they'll agree to be your advocate.
Having someone beside you to accompany you during doctor's visits to take notes or having someone to help you find the right specialist or even to just help research what treatment options are available can be incredibly helpful. And if you’re a patient in a hospital, rehabilitation center, skilled nursing facility or even just receiving outpatient services, having someone to advocate for you is almost vital.
I wish my wife and I would have never needed Jan’s services, especially considering my wife’s cancer was preventable. But we were so grateful to have a family friend close by that also just happened to be a nurse and patient advocate who did so much for us out of the goodness of her heart. I know many cancer patients are not so fortunate, but I would like to suggest to all those unfortunate enough to be dealing with cancer to think about lining up someone to be your medical advocate. It can be a lifeline when you need it the most.
For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.