Who is the Patient?
With such a devastating disease as mesothelioma you would think it would be easy to pick out who is the patient. Not necessarily. At a recent mesothelioma conference I attended there was an empty seat at a table with two couples who were already seated. I joined them, and as our conversation progressed it became apparent that both couples had one partner who had mesothelioma and the other who was the very supportive spouse. I had to ask both couples who was the patient.
The first couple were in there 70’s, friendly, and both appeared very fit. The man was the patient. He had recently undergone a pleurectomy and suffered some complications, but he was now doing well. His life is full of activities and he said he tires more easily than before surgery. His wife spoke of how she encourages him to rest every day, but some days he won’t give in. The man said he is cautious about how much weight he will lift. He tries not to lift anything larger than 10 pounds.
The second couple at the table were in their early 60’s. The woman was the mesothelioma patient. She had been diagnosed over two years ago, had never had surgery, and she had been treated with chemotherapy. She reported that she had never experienced shortness of breath, and overall she felt very well. Her biggest complaint was fatigue. It was not constant but on occasion she felt wiped out. Her appetite was good, and she looked wonderful. In a strange way she was grateful for the diagnosis. Mesothelioma had given her and her husband time to do what they wanted now- not in the future. They had done some traveling, visited their children, and made it a point to enjoy life to the fullest now.
Mesothelioma is a rare disease. It is also a disease that affects everybody differently. Every mesothelioma tumor is different, as is every patient and family that it affects. Knowing these facts, and seeing it play out with two couples at a mesothelioma conference, was very inspiring to me.
Watching these two couples, who did not know each other before the conference, sharing stories and supporting each other, is what being part of a sharing, supportive community is all about.