We're pleased to introduce a new series of blogs.
ACFs Kicking Cancer's Ass series interviews volunteers in our Peer Support Program and other stakeholders supporting our mission: to empower the anal cancer community and address the stigma associated with the disease. First up, it's Diane.
Being diagnosed with squamous cell anal carcinoma was quite the learning experience for me. Although I’ve been a caregiver for family and friends with various types of cancers, diagnosed at various stages, I’d not heard much about anal cancer.
When I was diagnosed, I wanted to know everything I could about this disease. Anal cancer does not get much press. Why? Perhaps it is because it is a rare cancer. Perhaps it is because it has a very descriptive name. Perhaps it is because it has become associated with the stigma of being a sexually transmitted illness. Farrah Fawcett gave anal cancer its 15 minutes of fame, and much of that dealt with her decision to use some non-conventional treatments after her cancer had metastasized. But most people I speak with have no idea what anal cancer is.
I am an advocate. I speak out. I participate in walks and races for various causes. So it is not surprising I wanted to let the world know that anal cancer exists, it is treatable, and it is not shameful to be diagnosed with this disease.
I spoke with my doctor at Memorial Sloan Kettering Cancer Center. I told her I wanted to be the face of anal cancer. I wanted to network, speak, hold workshops, etc. She recommended that I look into MSKCC’s peer program, as well as the support programs they offered. I was dismayed to discover that I would need to wait until a full year post treatment before I could become a mentor. At the time it felt like an unreasonable, arbitrary, and bureaucratic line in the sand. Well, that was before I went through treatment. These people know what they’re doing! It took months to regain my strength. And longer still to regain clarity of thinking.
But all the while I was looking for some way to be involved. I stumbled upon the HPV/Anal Cancer Foundation in February 2016, ten months after my diagnosis. The website was informative and non-judgmental. It felt like home. It felt safe and supportive, and it made me feel as though I could have a voice.
I applied to be a Peer-to-Peer mentor, and it has been one of the most rewarding experiences of my life. I have learned so much from my matches, and love the friendships we create, even if it only in the short term.
One of the aspects I love about being a Peer-to-Peer mentor is the willingness of some of my matches to share some of the more graphic experiences during and post treatment. I am not modest about my journey, and am willing to discuss the physical and emotional issues surrounding pain, bathroom issues, body changes, and sexuality. I inform my matches that they can ask me anything, absolutely anything, and I will be glad to discuss. In my four years as a mentor, I have not yet come across an issue I have not personally experienced. Immediacy? I’ve carried newspapers, diaper wipes, changes of clothes, and plastic bags in my car. Pain? I can describe the kind of pain that had me hanging onto my husband while I breathed through defecating, just to find the equivalent of rabbit pellets in my toilet. Sexuality? My husband wouldn’t let me look at my pubic area during and immediately post treatment. I would ask him every day how things looked (he applied my Aquafor and calendula ointments). One day, after 39 years of sleeping in the same bed with him, I asked the question again.
“How does it look?” I asked.
“I’m beginning to recognize things,” he said.
Yup, bodily changes.
When I share stories like this, I hear sighs of relief and recognition on the other end.
I feel for those who do not have someone to help them through the “how’s it look?” moments. I worry about those whose doctors have not told them about vaginal stenosis, and the need for dilators to reclaim vaginal elasticity. Or whose doctors do not explain that diapers and feminine hygiene products wick away moisture, the same moisture that needs to replenished after radiation therapy.
As we talk, I spend a lot of time detailing my own experience. I’m lucky. I have a strong layman’s medical background. I was treated at one of the premier cancer centers in the world. I have a strong support system. And, I’m not shy. I think my matches are surprised and sometimes chagrined by the things I tell them, but I also think they need to speak with someone who has been through this.
Today, more than five years since my diagnosis, I sometimes still cannot talk to my husband about what happens to me on a bad day. Yes, I still have them occasionally. And yes, I would love to say to someone, “I’ve had a bleeder of a day,” and not have that someone flinch. But people who have not been through the trials and travails of anal cancer cannot understand the literal crap we go through.
There is the emotional component too. I was surprised and appalled to discover that some of my matches had to deal with the stigma of an anal cancer diagnosis. One of my matches told me about being shunned by her community as she was reeling from the diagnosis. She continued to be shunned by the community as she went through treatment because she had a cancer that had a stigma attached to it.
If you choose to become a Peer-to-Peer mentor, you must be willing to be non-judgmental. You cannot judge the community. You can support the match. You can offer your ear. You can remind your match that a diagnosis of anal cancer does not make them an immoral person.
If you choose to become a Peer-to-Peer mentor, you should be prepared to learn things outside the parameters of anal cancer. I was surprised to realize that most of my matches were caregivers for family members who were diagnosed with various cancers before my matches were diagnosed themselves. I am impressed and awed by their tenacity,
There is a generosity of heart I have gleaned from my matches. They are caring and kind people. They deserve the same in kind.
Do you have a story to share? Get in touch!