The person who provides support for the patient with malignant mesothelioma, or any other serious illness, is a vital part of the whole team. Their role is all encompassing, as they are on the front lines from the beginning of the journey to the end. Many have become experts on the disease, navigating the medical system, and supporting others with their journeys. It is a role that can be life changing, not only for the person with the disease, but for the caregiver.
Over the years of taking care of patients with mesothelioma, we have seen some of the best caregivers as they advocate for their loved ones. Recently we witnessed the importance of recognizing their contributions and the positive impact those words can have on a caregiver.
Mr. A was diagnosed with pleural mesothelioma shortly after the first symptoms appeared. His wife did extensive research and started taking notes of all his appointments. Names, dates, what was discussed, what the recommendations were. She had filled up many notebooks on their journey. Mr. A referred himself to a mesothelioma center, underwent extensive testing, had chemotherapy pre-surgery, and had a slow recovery post-surgery. He faced his health challenges with Mrs. A’s continued support. She questioned, researched, encouraged, and asked questions of any one who had any contact with her husband. On a recent return checkup six months later, Mr. A is much better; living with mesothelioma and enjoying his life. He is adjusting to the changes that living with this disease has brought to him and his family. Mrs. A is happy that her husband is better and continues to be one of the best patient advocate’s that we have seen.
Talking with Mrs. A. about her experience as her husband’s caregiver, several interesting points came up. As a retired teacher, the only way she felt she could keep up with all the medical terms and doctors’ appointments were with a notebook, not a computer, not an app, a simple notebook. She took it everywhere with her and used it extensively to navigate the medical system. She also shared that most of the time she was afraid and the way she was trying to cope was ask questions. Information was vital to her. She was very grateful for the team, but particularly grateful to Mr. A’s surgeon for saving his life. As Mr. A’s surgeon told Mrs. A, you were the one that saved his life. You were the one that when things did not seem right, you called or insisted that he call. You were the one who has been with him through the whole journey, you were the one who saved his life.
Caregivers are vital members of the mesothelioma team, and their contribution needs to be honored and recognized.