Caregiver of wife who was diagnosed with multiple myeloma.

Dave Seaney

I explain how the words caregiver and incurable shaped my wife’s cancer journey and why I believe more hopeful language better reflects our experience.

My wife was diagnosed with multiple myeloma in 2011. And during her journey, there are two words I always heard that I have wanted to change, or at least hear less frequently. These are words all cancer patients are familiar with; caregiver and incurable. Let me explain why.

The definition of a caregiver is “a person that provides support to someone who needs help with daily activities. They can be professional, paid caregivers or unpaid caregivers, like family and friends. Caregiving responsibilities vary widely, from helping with personal needs like bathing and dressing to managing appointments and finances.”

I obviously fall under the unpaid caregiver category according to this definition. I take my wife to and from appointments, go to infusions with her, helped her go through a stem cell transplant, managed the finances when needed, kept up with her treatment plans, bathed and fed her and cleaned up her messes (you other unpaid caregivers know what I mean). But I do it all for free and hold her hand at the same time. I do not refer to myself as a caregiver that the medical profession labels me. I call myself her “Lovegiver.” If you qualify, then you should also start using this title.

Next is the word “incurable.” An incurable disease is “an illness that cannot be cured with current treatments and may lead to a shortened life expectancy. While an incurable illness can often be managed with treatments to control symptoms and improve quality of life, there is no known path to full recovery.” And it is usually labeled as a chronic disease, which is a long-term illness often lasting three months or longer that can usually be managed but not cured.

In the above definition, they do use the encouraging words “may” and “current,” but then say that there is no known path to full recovery (cure) at “this time.” So when she was diagnosed, the only words my mind heard were “cannot be cured” and “shortened life expectancy,” which translated to me as “she won’t be here very long.”

At a seminar shortly after my wife’s diagnosis, we heard a doctor from the Simon Cancer Treatment Center in Indianapolis say, “If you are going to have multiple myeloma, now is a good time to have it.” As stunning as it was to hear at the time, it was true. Many new treatments were starting to come out then, some of which my wife would eventually receive. Some of the treatments she later received were not yet even in clinical trials at that time.

During these past fourteen years, she has relapsed a couple of times but has been off all treatment for the last eighteen months and living “normally” again. During all these years, we have met or known of others who have been free of detectable cancer for twenty or thirty years. The above definition of incurable said “can often be managed with treatments to control symptoms and improve quality of life.” My wife and others are no longer defined by that phrase either. So then what is a “full recovery”?

Maybe the word “incurable” should stop being used so much and be replaced by “can be” or “will be.”

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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Articles

A personal narrative highlights the emotional and semantic challenges faced by caregivers and patients dealing with multiple myeloma. The author, a self-described "Lovegiver," questions the use of terms like "caregiver" and "incurable," advocating for more hopeful language. Despite the initial prognosis, advancements in treatment have allowed the author's wife to live a relatively normal life, challenging the traditional definition of "incurable." The narrative underscores the importance of evolving language and perspectives in the context of cancer treatment and patient care.

Dave Seaney

Why I Think the Term ‘Non-Curable’ Should be Changed to ‘Can Be’

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