Patient’s Mesothelioma Journey is Different From Each Other

• Lisa Hyde-Barrett
• Nurse's Corner

For patients diagnosed with mesothelioma, “journey” is the word used often to refer to the different steps of the patient’s condition. According to the Oxford Dictionary, journey is defined as “An act of traveling from one place to another,” or  “A long and difficult process of personal change and development.” Both of these definitions can be applied  at different points for mesothelioma patients and their families. No one knows what the journey will look like, or how long it will be, as each patient‘s experience is different.

This past week, our medical team saw patients and families who were at different points on their journey. We saw a gentleman who had surgery 25 months ago. He came for a follow-up and stopped to see us: he looked well. It was shocking to see him walk in with his family and with a smile on his face. The last time I saw him he was fragile and weak, and his personality had dulled from his illness. He was subsequently discharged to a rehab facility, but he did not flourish and his family decided to take him home. One of the healthcare workers asked him if he was enjoying life now, and he said, “Yes, but it is different now.”

He doesn’t work so much anymore. He has learned to enjoy different things that make him happy, like taking his grandchildren out for ice cream cones. He is being maintained on chemotherapy which he said is okay, and it is just another thing he has learned to live with. His only complaint is back pain from his surgical site where they removed his lung. His family was with him and his grown children have also begun to move on with life. For example, his daughter who was his primary caregiver, has taken a new job, relocated, and is enjoying her life.

Two years ago he or his family or his healthcare team could not have foreseen that he would have recuperated enough to smile and enjoy life. On the flip side, I spoke with someone on the phone who is frustrated with this disease and how it is stripping her loved one of his life. A few short months ago he was moving around fine, but now he needs a lot of assistance with everyday living. His wife is trying to reassure him and help him enjoy his life, but he is so limited from the physical weight of the disease. Is this a progression of his disease or is it another bump in his journey?

Journey is a great word to describe the mesothelioma experience. The journey can be “a long and winding road,” with unexpected turns and twists, that no one can predict. The “long and difficult process of personal change and development” can apply to life with mesothelioma, a journey no one knew they were going to make.

If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, please email me at [email protected].