Caregivers for cancer patients are very special people. They are the ones who stay by the side of their family member, friend, or perhaps even co-worker who is diagnosed with cancer. They frequently are the ones who listen most carefully to what the doctors have to say, and they frequently provide the support that patients need to get through their arduous journey once a cancer is diagnosed.
I don’t need to tell you that some of the most difficult and feared words that a doctor can say to a patient are, “You have cancer.” We know that once those words are uttered for the first time, a person can go emotionally and even physically numb.
That’s where the caregivers step in. But I think it is more than “giving care.” It is one of the most special partnerships that any of us can imagine. So I am going to suggest that we consider changing this phrase to one that perhaps more accurately describes this relationship, namely “carepartners.”
Patients don’t hear much after those words are spoken regarding their diagnosis, much less the treatment or the prognosis. All too frequently, they are processing the fact that their cancer may be (and unfortunately all too often is) a life-threatening event. They begin to try to deal with the realities of surgery, chemotherapy and radiation including all of the associated treatment-related side-effects. They begin to cope with the personal realities of their illness, including whether or not they will be able to continue to work, whether they can afford their treatments, whether they can get the treatment they need.
There is so much that goes on at that moment of diagnosis and the days and months thereafter that it is frequently impossible for many newly-diagnosed cancer patients to maintain control of their lives.
That’s where many of us have seen caregivers step up to the plate and take over.
It may be fathers and mothers, it may be our wives and husbands, it may be our significant others, it may be our children, it may be our friends or even our colleagues at work. They are the ones who listen, the ones who help, the ones who check out the internet for the latest and best places to get treatment for a particular cancer, the ones who are there to hold our hands, to listen and to comfort.
This past weekend I attended a meeting where I heard personal stories from our volunteers about their own involvement with cancer.
You can’t help but be touched by their experiences. These aren’t by any means unique stories. They are representative of what so many people have gone through when touched by cancer.
The story of someone who is here with us years later after being diagnosed with what was once a fatal illness which became curable, in no small part because of research sponsored by the American Cancer Society. The story of someone else whose spouse was afflicted with a formerly fatal cancer with a several year life expectancy who is still functioning and working and living every day many years later.
These are the stories that can overwhelm you emotionally. You sit, you listen, you try to cope and understand what these special people and their families have gone through, and you say silent prayers of gratitude that they should stay well and be well.
You hear how they have supported their loved ones who were diagnosed with cancer, or the support they received from a spouse when they themselves were going through chemotherapy to save their lives.
You realize that there is something more beyond the word “caregiver” that describes these relationships. You understand it is not just “giving.” It is larger than that. It is “partnering,” in the very real sense of the word.
One comment in particular stood out to me this weekend.
During a meeting, one of our volunteers mentioned that although her husband had cancer, she too felt that she was a survivor. She recounted how they have gone through his illness together, and continue to do so, for many years. It is a shared burden, and a shared success. There have been good days and not-so-good days, but they are days they have faced together.
That took me back to my days as a practicing oncologist and as a primary care internist and led me to think about the ways patients, families and physicians deal with different types of illnesses. Not to say that other forms of illness are not as serious or as life-threatening as cancer. But, in my experience, there is an immediacy, an intensity and an uncertainty that is frequently more prominent with a diagnosis of cancer.
We deal differently with the diagnoses heart disease, diabetes and lung disease than we do with cancer. We cope differently; our outlook and expectations are different.
It is that intensity which bonds many of us together in the fight against cancer. It is what leads people to make a lifetime commitment to fight cancer, even long after their loved one may have lost their struggle. We need to perpetuate the experiences we shared with loved ones who are no longer with us. It is what makes so many of us try to find a way to channel our relationships with cancer, through volunteering, treating, caring, advocating and researching.
Then it struck me that this commitment to giving care and support in the cancer experience is really a partnership.
If you are fortunate to have love in your life—whether it is with a parent, a child, a spouse, or a friend—you understand how special a caring partnership can be.
I don’t think the care and support provided by one person to another with cancer is any less intense or full of meaning than a partnership in love. It goes far beyond what most of us experience in our everyday lives, and calls on the breadths of our capabilities and the depths of our emotional strength.
So I am going to suggest that those who support and help care for cancer patients in their time of need should be called “carepartners” as opposed to “caregivers.”
We are in awe of those who have faced a diagnosis of cancer and moved on with their lives. We admire those carepartners who have been by the sides of those diagnosed with cancer and have helped to make the decisions and provide the comfort that can make a very difficult journey perhaps a bit more bearable.
In my mind, having a true partner in life is a wonderful gift.
To have a partner who cares in a time of need is a blessing beyond words.
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