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The Oncologist, the Patient and CKN — Sharing Knowledge

Benny’s World

Benny1by Liz Margolies, LCSW
Executive Director, National LGBT Cancer Network

Benny P. is a 45-year old Mexican American gay man who lives in Austin, Texas.  In September, Benny was diagnosed with anal cancer, his sixth cancer diagnosis since 2002. He has been treated for Hodgkin’s Lymphoma (three times), squamous cell carcinoma on his vocal cords and skin cancer.  This is the first time, however, that his treatment will require all of the “big three”: surgery, radiation and chemo. I wondered what and who helps Benny keep his spirits up throughout this ordeal.  I also wondered if being gay shapes his cancer experience at all.

Most cancer patients and survivors create informal teams of people for support to help them through the treatment process. These people may accompany them to appointments, make hospital visits and/or help with chores, children and pets at home. Some may be paid, like psychotherapists and home health aides, others may be related by blood, and some support systems are made up of “families of choice”.

 

The National LGBT Cancer Network’s research found that, compared to other survivors, lesbian, gay, bisexual and transgender (LGBT) people often have some striking differences in who they turn to for support during cancer treatment. For example, many LGBT people have been rejected by their biological family due to their sexual orientation and/or gender identity, and this tie is not necessarily healed following a cancer diagnosis. Traditional intake forms that ask only about marital status will miss these other bonds of responsibility and support.  Treatment centers that do not welcome and respect an LGBT person’s support team are subtly conveying discrimination.

 

At the time of my writing, 32 states have marriage equality; for the LGBT people in the 28 other states, their most important relationships may exist outside of legal definitions. i.e., their life partners are “legal strangers”. And, while the law now permits hospital visitation by anyone the patient invites, many LGBT people do not feel safe coming out to their healthcare team. They fear that they will receive substandard care due to homophobia and dare not take the chance. As one survivor in our research told us, “As an LGBT person receiving chemotherapy and radiation, I was afraid to reveal anything about my orientation as cancer treatment is literally life-and-death. In a conservative area, I was not comfortable revealing this information to my healthcare providers, even though I am ‘out’ to family and friends.”

 

Benny goes to all his treatments alone. Benny’s parents live nearby but they do not go with him to the hospital either. Benny believes it is important for him to do it all himself; going to radiation alone improves his sense of well being by reinforcing that he can take care of himself. Benny goes alone but he does not feel alone; in addition to his family, he has a list of about 12 people, both gay and straight, who are willing to take him if he cannot take himself.  He also speaks regularly to a “buddy”, a volunteer from the HPV and Anal Cancer Foundation who also has anal cancer.

 

Benny2After losing more and more of his shoulder-length gorgeous tresses, Benny called the friends over to his house to take turns shaving off the last of his hair. They arrived with scarves and hats to keep him warm afterwards. It became a party. The photograph captures the love they surrounded him with.

 

Each friend provides Benny with a different type of support. Celso supports him the most. He visits Benny whenever he can and often takes him to the movies. Michael is a listener and brings Benny food to make sure he stays healthy and strong. Bennie, his longest friend, makes him laugh the most. All the friends remind Benny to stay grounded in his spirituality. All of them love him as he is and make him feel grateful to be so well loved and cared for.

 

Benny’s world is complicated but it fits him perfectly. Every cancer survivor must construct a support system that matches their individual needs and circumstances.

 

 

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