When looking back on his time in the support group, Laurence feels that an emotional weight has been lifted. “The group as a whole has become like a unified support system where anything goes—any question, any topic, any fear,” he says. “It’s about surviving our lives and it’s been very helpful. I’ve witnessed that many men are like clams and they hide. It is very important for me to be aware of my feelings and use them to see and interpret my life.”
No one should face a cancer diagnosis alone, although some do whether out of circumstances or other concerns, such as fearing rejection or being a burden to friends or family. As Laurence experienced, talking with others who are facing similar feelings and challenges can be very helpful. Wanting to establish a caring community is a wonderful way to find support from other people going through a similar experience while at the same time reducing isolation. A support group may offer patients a safe space to connect with others and to receive and offer support.
If a group setting is not right for certain patients, speaking one-on-one with an oncology social worker can help develop strategies for coping with some of the more complex emotions and concerns they may be experiencing. Encourage patients to resist the urge to retreat—there’s help available, and it can change the course of their future.
Caregivers and family may feel especially confused by the patient’s tendency to shut down or isolate. Just as the patient is trying to deal with the diagnosis and treatment and the concerns that go along with it, so, too, is the family. In fact, as is often stated, the experience of being a caregiver is as stressful as being the patient, although the caregivers stressors are different. There may be a heightened sense of anxiety surrounding how to best help and how to communicate. Much has been written about the need to remain positive for the person with cancer, and family members are often concerned that if they express negative thoughts or concerns, it will make the illness worse.
Resources are available for family members coping with a loved one who has retreated emotionally, including the booklets Coping with Cancer: Tools to Help You Live and Caregiving for Your Loved One With Cancer. The fact sheet, “What Can I Say to a Newly Diagnosed Loved One?” may also help patients’ family members talk with you about your diagnosis. Another good resource is The Breast Cancer Companion (New York: Avon Books; 1993) by Kathy LaTour; several chapters deal with opening communication.
One suggestion is also to encourage patients to set aside time to have a family meeting and allow each member an opportunity to talk about their concerns. For example, family members might meet to read aloud letters they have written about their own fears and emotions, as a way to begin the discussion.
For more information about finding support, and for other helpful resources, visit www.cancercare.org
William Goeren is director of Clinical Programs at CancerCare.