A patient recently diagnosed with malignant mesothelioma asked what he thought was a simple question, “how much time do I have?” As the mesothelioma expert answered his question, it was not what he expected. He had read the statistics and the statistics told him an average number and he was expecting to hear a number close to it. He had read the average time that patients diagnosed with mesothelioma live.
One of the most frequently asked questions of any one diagnosed with malignant mesothelioma is how much time do I have? With the diagnosis of any serious illness time is what we focus on to help put the unthinkable in context. Before the diagnosis to some of us time was an abstract thing in our lives, something we didn’t have enough of, something we couldn’t control. Something that we knew was finite but not something that we thought of all the time. Once diagnosed with malignant mesothelioma the amount of time can become something that is very important.
The concept of time is something we learn about at an early age. All through life time plays an important part in the organization of our lives. It is the framework for our lives. Events that shape our lives are often marked by the times of our lives and what we were doing at that point. Time is something none of us is promised.
So many things are involved in planning for living with a cancer diagnosis. When receiving the diagnosis and being admitted for treatment it can be- How long do I have to be in the hospital? How much time will it take to feel normal again? Is this the last time I will do this one thing? Go to my favorite restaurant? Will I know when my time is up? Should I go home or will I get more time if I try another treatment?
With mesothelioma, it is difficult to answer that question. For example, in recurrence recent progress has been made. Recurrence, four or five years ago the treatment options were limited, now there are new treatment options aimed at recurrence. The timing of the diagnosis is crucial. Is the disease early, intermediate, or advanced? What cell type is the disease, is it epithelioid, sarcomatoid, or mixed? What shape are you in physically? What do you want?
The statistics on time and cancer diagnosis are not black and white. They are as individual as everyone’s journey with the disease. The question how much time do I have is as individual as the disease itself and the individual person.
I recently saw a patient and he told us that he had only one year to live. He spoke about this fact very routinely and matter of factly. He told us about how he asked this question many times but no one was willing to answer it. He thought his time was limited but wanted confirmation, at his last appointment he was speaking with the doctor and the doctor was getting ready to end the appointment. Before he could leave the room, the patient asks the doctor to close the door and to sit down. He explained- I know I am sick with a terminal illness. It is important for me to get the facts. The patient expressed how he needed to know how much time he had left. He explained he had three daughters and needed to make plans. His doctor then explained that he could give him the median statistics but he did not have a crystal ball. The doctor spent time going over his options and what the statistics actually meant. What the patient heard is that he has one year left to live. He is now using this as a positive motivator to prove the statistics are wrong. Did the doctor tell him that? No, he did not.
It is a common question with no simple answer. Do any of us know how much time we have left? It is better to spend the time we do have living life to the fullest, doing what is important to us!
– Ellie
