Editor's Note: This article was originally written by patient expert Tom Brown.
With Breast Cancer Comics by Dash Shaw
A diagnosis of breast cancer can knock the wind out of a woman and her significant other. I still remember what it felt like when I learned that my wife had breast cancer. I couldn't get the thought out of my head that she might die.
I did not want to be left alone. I wanted my wife of twenty-five years to be by my side and grow old. It all seemed so unfair.
For your wife or girlfriend, feelings of shock, fear or grief may be coupled with the sense of being startlingly alone. Combating this sense of loneliness is just one of the ways breast cancer caregivers can support a patient.
Whether you offer emotional support, assist in managing appointments and treatment logistics, or pitch in with the chores, your role as a breast cancer partner or caregiver can be critical to a woman's survival.
While breast cancer caregivers range in age, gender and relationship to the breast cancer patient - perhaps the mother, adult daughter or friend is the primary source of support - this article focuses on men who support women through their breast cancer experience. In particular, it looks at resources and support online.
The male caregiver has a plethora of information available to help him succeed in caring for his loved one. There are literally hundreds of websites devoted to breast cancer, and many of them have message boards or sections that discuss the role of the breast cancer husband or caregiver. While none of these sites yet have the presence, completeness, or resources of the likes of giants Susan G. Komen for the Cure or breastcancer.org, a few sites are notable.
Men Against Breast Cancer
MABC is a non-profit organization that aims to educate men so that they can be effective caregivers. The website, which is supported by two pharmaceutical giants, Novartis and Astra Zeneca, is still under development in several sections. Nevertheless, it offers valuable support, resources, and brochures.
I found the "Guy's Guide to Mammography to be a very good brochure. The "Find a Friend" tool aims to help you find breast cancer husbands or boyfriends who are like you. When I last checked, there were fewer than 20 men participating in the index. To access the full listing, choose "Doesn't Matter" in the pull-down tabs for "State," "Marital Status," and "Kids?"
In 2003, Men Against Breast Cancer was awarded the first ever CDC grant to enlist men in the fight against breast cancer, focusing on the underserved African American, Latino and Native American communities. The $1.1 million grant is "the first to recognize the positive benefits of educating men on how to provide critical day-to-day emotional, mental and physical support and care to their wives, mothers, partners, daughters and other loved ones stricken with breast cancer."
Every year the organization conducts a training conference in Baltimore, MD on how to become a better male caregiver. Attendance is limited to the first 65 applicants. I attended last year and found the training staff to be very professional. It is a valuable experience for any male caregiver.
For two days, Partners In Survival workshops focused on how breast cancer impacts individuals as well as the family unit. The workshops included practical tips to help manage the many elements of the breast cancer crisis, including, doctor's visits, household responsibilities, children, intimacy, communications, and more. Specific emphasis was placed on men understanding the physical and emotional needs of their female partners.
Caregivers & Men's Support Board
This site is a basic forum for men whose wife, girlfriend, sister or mother has breast cancer. Most of the participants in the forum are men, but women comment as well. The activity on the forum goes up and down dramatically, but it is notable for the sharing of ideas by men whose loved one has breast cancer.
One particular thread from October 2006 stands out in my mind. It is a sad note from a man called Dan that reported his wife had just passed away. The responses and emotional support for him were outstanding.
During my experience as a breast cancer caregiver, I found that keeping a daily journal was beneficial. It gave me a place to express my feelings. Now, with sites like the Caregivers & Men's Support Board, men can interact with other men who are experiencing the same thing. It is a wonderful way to gather information and just vent some pent up feelings.
Breast Cancer Resource Directory of North Carolina
This is one of the most compact but easy-to-use sites available for the male caregiver. Although some content is borrowed from other reputable sources, the format is simple - it's all on one page. The most useful information on the page is a combination of information derived from the American Cancer Society and the National Alliance of Breast Cancer Organizations' Breast Cancer Resource List.
The site has useful information on how the caregiver can take care of himself and how to recognize signs of burnout. In addition, there is a list of other resources, including books and websites. The selection of sites is not necessarily specific to breast cancer husbands or partners but is useful nonetheless. For its compactness and usefulness, this is one of the most comprehensive sites that I have seen devoted to the male caregiver.