Recovery Needs Preparation After Mesothelioma Patient's Surgery
Over the next few weeks I would like to do my best to describe to you a patient’s mesothelioma journey from start to recovery. I was taking care of a woman who was in her seventies, who had had a rough course since her mesothelioma surgery. Her daughter, also her healthcare proxy and caregiver, was at her bedside feeling anxious and frustrated. She was afraid that somewhere along the way she had made a mistake in her mother’s care.
Why wasn’t her mother “snapping out of it?” We talked about how life was for her mother before she was diagnosed with mesothelioma. Mary described her mother as able to get around, a little short of breath, but it did not keep her down. Her mother lived with her son, but she was completely independent: she drove and ran her own errands.
When the family met the mesothelioma treatment team, Mary remembers going to a meeting with other patients. She admits that she was overwhelmed and possibly missed some important information. No one ever spoke about delirium, or the fact that her mother would need a ventilator for so many days.
Mary and her mom figured she would have surgery, wake up to some pain, but then get up and get going. Instead her body was swollen, she had a tracheotomy and she required full-time care. When she walked, she needed physical therapy and nursing and respiratory therapy because she needed the ventilator. Her nutritional status was impaired – she was being fed through a tube in her belly. These setbacks may not seem big to a healthcare provider, but they can be devastating to family members.
Aside from caring for her mother, Mary also discovered that there is another set of issues. Visiting her mother started to become costly. The price of parking, traveling, food and time off from work became challenging. It was also emotionally draining. Being a caregiver is very difficult.
Mary had some ideas that would or could make a difference. Mary thought that maybe more details regarding the true post-operative course would have been helpful. Also, if she had a patient advocate, someone who is neutral, she could talk to about her mother’s condition she may not have been so stressed. Although Mary admits that everyone has been very helpful, she thinks more would be better.
Everybody handles these situations differently. Nothing will be perfect and there is always room for improvement or changes. Sometimes a caregiver thinks things should be different, but there are reasons there are not. If possible, get a patient advocate, and request meetings with the hospital staff who are caring for your loved one. Educate yourself as best you can about mesothelioma.
The idea of these blogs is to help you make this journey as easy as possible. Part of the equation to recovery is the mental strength to move forward and stay positive. Now it is important to figure out what you need to make your journey as easy as possible.
Know more about Mesothelioma and how you can deal with it.