Grandma Patricia’s Cancer Story
Grandma Patricia was an intelligent, educated, caring, and independent woman. She worked as a teacher for many years and spent her leisure time gardening, walking, swimming, playing cards and the piano, and being involved with her church. Grandma Patricia was a firecracker who would always stand up for herself. She loved her husband, Grandpa John, of over 50 years deeply. They had a very supportive relationship and acted as equal partners in all things.
Grandma Patricia was an intelligent, educated, caring, and independent woman. She worked as a teacher for many years and spent her leisure time gardening, walking, swimming, playing cards and the piano, and being involved with her church. Grandma Patricia was a firecracker who would always stand up for herself. She loved her husband, Grandpa John, of over 50 years deeply. They had a very supportive relationship and acted as equal partners in all things.
Grandpa John died unexpectedly in 2021, only months before Grandma Patricia was diagnosed with lung cancer. Suddenly alone, Grandma Patricia struggled to understand her diagnosis, prognosis, and treatment options but managed to have her cancer go into remission with treatments.
In 2022, only months after she was in remission from her lung cancer, she was diagnosed with liver cancer. With her first round of cancer, she was confused, and she did not understand what her plan of care was. The second time she was even more confused. Grandma Patricia didn’t know when she was meant to get blood work, which doctor she was meant to see, or if she was supposed to follow up on anything. In Grandma Patricia’s worldview, her doctors and the healthcare system were supposed to care for her, so she left the details up to them.
Unfortunately, the current healthcare system was not able to provide for Grandma Patricia in the way that she needed. Grandma Patricia frequently forgot to ask clarifying questions, often had to book multiple appointments to understand one issue and struggled to control her health journey. Her illness became so confusing that she wasn’t aware she was taking oral chemotherapy medication. Instead, she often said, “This pill would make it better in the end.”
I was watching this happen during a global pandemic from across the country. I was helpless to intervene, ask for medical clarity, or help Grandma Patricia with her illness. Worst of all, I am a Registered Nurse.
I would ask Grandma Patricia questions about her doctor’s appointments, medications, and care plans during this time. She would give me answers that, as a Registered Nurse, I knew could not possibly be true. Trying to coach and guide her through this critical time was incredibly frustrating without having the correct or complete information.
In fact, it was only when I asked Grandma Patricia to show me her ‘miracle pill’ bottle over video calling that we realized she was taking oral chemotherapy. Grandma Patricia immediately booked an appointment to speak with her physician, as she had made it clear previously that she was not interested in chemotherapy. The drug was stopped immediately.
Also, because Flying Start Advocates gives our clients access to the RN’s appointment notes, Grandma Patricia could have shared those notes with her family so that we could have helped. Having access to those notes would have given her the ability to review what was said during appointments and would have increased her compliance with the plan.
Globally, many people are struggling, like Grandma Patricia, that could benefit from our client advocacy service. We are hoping to reach and help as many of them as possible.