It’s bad enough to cope with cancer for the person who has it. But for every one of us, there’s usually two or more family members directly affected and a network of friends and loved ones. Their lives are touched, too. They are cancer caregivers and I’ve noticed four ways they are affected.
If it wasn’t already clear to you and your family what roles you actively play, a cancer diagnosis usually brings those roles into focus. People with cancer drop the ball for many reasons, and family members are left to pick up the ball and run with it.
The trauma of a new diagnosis fully occupies our minds, and we lose track of appointments, deadlines, and daily tasks. If we’re in treatment, side effects may prevent our accomplishing many tasks because of tiredness, pain, and a host of other side effects. Folks in chemotherapy with strong meds, those with leukemia for instance, often land in the hospital for several days or weeks.
During chemo, food may taste metallic, may produce gagging or complete intolerance. People often aren’t hungry at all. Comfort foods no longer provide comfort.
As a result of all of these, spouses take on added responsibility. The absent-minded husband is transformed into the schedule-keeper for the family whether he’s good at it or not. Even children become care givers, comforting a parent or feeding them. Family is left trying to find something for a sick person to eat, a doctor's words echoing in their heads, "Don't lose any more weight."
Cancer trumps everything
Whether we want to be, those of us with cancer are often permanent kings of the hill, lifetime members of the toppers club, winners of the biggest problem award.
We may be consumed with our diagnosis. Everything we read or see or hear is cancer related. Everything we talk about is cancer related.
It can be a challenge to have a conversation about an upcoming social event for work or a choir performance or a soccer game. Doctor’s appointments and side effects from treatments may prevent our attending or even caring about these once important events.
The worst part, though, is that spouses and children may feel unable to complain about that absence. If mom is home throwing up because of chemo, is it really “ok” to feel bereft because she missed your dance recital?
Any problem, concern, worry, loss or injury happens in the context of a critically ill person. Family and friends may feel they can’t talk about the day-to-day experiences and challenges they face.
The floor is covered with egg shells
Everyone in a cancer house may feel like they’re walking on egg shells. People with cancer may cry more often, may not want anyone to talk about cancer (theirs or anyone else’s), may be angry or irritable.
A cancer center commercial may come on during a television show or a show might have a minor story line about cancer, both of which might provoke an emotional response. Anger. Sorrow. Frustration.
Family members are left navigating an unpredictable sea. A person with cancer may want company at one doctor’s appointment but not at another. She might be in a foul mood after one appointment or feel energized.
Treatment may produce unpredictable responses. Does the house need to be in complete silence? Does mom need help with chores or is she doing manic house cleaning to cope with pain? Will she bite my head off if I ask?
Cancer isolates and alienates
All of these changes can result in isolation and alienation. It seems to be a vicious circle. If I can only talk about cancer and my family or friends feel they can’t talk about the day-to-day, then all of us feel disconnected.
I have never needed the normal, day-to-day stories of my friends and family more now than before I had cancer. I need to practice listening to those stories and caring about them in order to put my life and my diagnosis into perspective.
Life and friendship and love are made of some big moments, but they are mostly about shared moments, the stories of daily life, the small struggles, the irritations and frustrations.
Life in crisis tends to create such a racket, so much noise, that the quiet refrains can barely be heard, pushing us away from each other.
The Cancer Support Center in Homewood
Among the dozen reasons I love the Cancer Support Center is the support they have provided my daughter. From groups for children of people with cancer, to art classes, to nutrition classes, to game nights, to relaxation classes, the Center draws in those of us with cancer and our families.
Because of the Cancer Center’s programs on nutrition, my daughter and I now have a shared interest in healthy eating. We comb cookbooks and the internet for recipes. We are loving eating quinoa and kale, learning about power foods and spices. We love to cook together. We have found a shared day-to-day experience that draws us together.
Cancer is a kick in the gut to the person diagnosed, but it also punishes families and friends. When I was in the hospital,I was terrified and felt terribly alone, literally connected to the walls and imprisoned in my bed.
I had competing desires for my family to be right there in my room and for them to be as far away from the tubes and wires and fear and dread as they could be. I simply couldn’t bear the look on my daughter’s face when she saw me, two IVs in my arm connected to fluid and medicine, a catheter emptying out blood and urine. I had to send her away from the trauma, and both of us felt alone.
If you or a family member have cancer, I urge you to find support. Care giving is very hard work, and you need support just as much as a person with cancer.
The Cancer Support Center offers free services to anyone affected by cancer. They have two locations in Homewood and Mokena. Contact the center at (708) 798-9171 (Homewood) and (708) 478-3529 (Mokena)
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