We have noticed over the years of talking with mesothelioma patients and their families that mesothelioma is an insidious disease. We have educated ourselves through seminars, speaking with patients, and general observations. There are some important factors that mesothelioma patients have taught us that you will not learn in a book, or in a webinar or a class.
What do mesothelioma patients need? Often it is the most basic of elements that make the difference. First is to become an active listener. Active listening is a popular phrase in our society. It implies that the person doing the listening fully concentrates, understands, responds, and then reacts. It requires a skill that is not commonly practiced in today’s busy world. Every patient and most caregivers would like to be heard. Not only do they want to tell their story but they want to express their emotions about this new found condition. Many people need an open-ended question to start the ball rolling. Telling your story aloud validates what is happening and allows the story to become real. Retelling the events that led up to the position you are now in, becomes true or actual. Saying it aloud, allows it to confirm it exists and not be imaginary, all those physical symptoms that you were unsure if they were your imagination or attributed to the aging process now have a name.
One of the most challenging topics that we engage about in conversation is death. It is an uncomfortable topic. Many times, the patient or caregiver will want to talk about anything else but this topic. It becomes a topic to be avoided. Allowing a person to talk about their final stage of life allows the person to have a platform to speak about a situation that is uncomfortable for most people. Often, we hear comments such as “that won’t be you,” or “don’t be negative,” these comments are meant to be helpful, but can shut down the conversation. We must allow patients to talk about this time of their life. There is no timeline in life for this conversation, some might feel that after being diagnosed or before deciding on a treatment regime is too quick, there is no best time. Just have the conversation. What do you or your loved one want? What is acceptable to you? How would you like to live out your final days?
There is a balance that must be achieved. By having the conversation you are not going to quicken you or your loved one’s death nor by not having the conversation you or your loved one will not live forever. It is important to realize that there could be many days, months, or years living with mesothelioma and enjoying life. Each of us is on our own unique journey, complete with great days and not so great days. Death is something we cannot control as all of us will experience it.
Talking about our wishes does not mean that you are giving up. It does not imply that you and your mesothelioma team will not continue to fight against this disease and explore any options to a better quality of life. It acknowledges that your journey will bend as all our journeys do.
There is an excellent book, “Being Mortal,” by Atul Gawande that explores this topic. There is also an active movement called www.theconversationproject.org that supplies, guides, and information on addressing this issue.
– Ellie
