I recall a patient’s husband recounting what his wife’s oncologist said when her cancer progressed and was no longer curable. The doctor told her to adjust her outlook “to living with cancer rather than dying from cancer.” At the time of that conversation, I was involved in his wife’s care in my role of medical humanist at the cancer center in Bennington, VT. Her husband told me that “I not only provided a bridge between the doctor and the patient but also between the patient’s present and future.” These were humbling words but I say them because of how difficult it is to live in “no man’s land.” What I did for this patient and her husband was document their concerns about the oncologist’s statement so it could be addressed at their next office visit. Words are words but the experience of hearing them can be something entirely different.
Another patient with advanced cancer talked about a shifting sense of self. She said, “I know that now, I don’t know who I am.” She went on to say that there were days that she felt “fine” but was faced with the knowledge that cancer was inside her body.
Then, there were the words of a patient featured in the Difficult Conversations video who said, “Denial can be a wonderful thing.”
So, how does someone navigate “living with cancer.” Since I cannot talk from personal experience, I need to rely on the stories shared with me. When told about facing incurable cancer, I witnessed some patients who focused on dying while others were determined to live fully. Why do some prepare to die while others find a way to live fully?
In my conversations with patients, some described what could be called a reliance on “inner strength.” But what is that? Why do some patients have it and others do not? I was told that this “strength” can come through faith, whether religious or spiritual. Others used words that sounded psychological or philosophical but were helpful in navigating what they could not control. In this case, I’d often quoted them the words of the poet Vaclav Havel who said, “Hope is not the same thing as optimism. It is not the conviction that something will turn out well, but the certainty that something makes sense, regardless of how it turns out.”
We must remember that doctors have a hard job. They are not psychologists or philosophers. What they can provide is their medical expertise with diagnosis, risks and benefits of treatment options, prognosis and offer encouraging words. It’s up to us to decide how to live our lives in the time we have, even with limitations posed by the effects of illness.
Readers, you’re welcome to share your sources of inner strength when mortality was staring you in the face.