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. As a foundation we are indebted to our volunteers who assist with our Peer to Peer Support Programme, but we are always on the lookout for more to join us. Please do consider if you can donate your time to assist our work.
In our latestpiece in the Kicking Cancer's Ass series, Marshall talks about her experience volunteering for the Foundation.
The Pleasure of Volunteering for the Anal Cancer Foundation Peer to Peer Programme
Most – if not all – anal cancer patients have experienced not only the struggle to master the diagnosis and the short but brutal treatment to defeat this cancer, but the struggle to deal with the reactions of family, friends and co-workers. Long ago breast cancer was treated with the same kind of awkwardness; the name itself rarely if ever appeared, even in advertisements for donations to battle it - the American Cancer Society was required by the New York Times in the mid-fifties to refer only to “severe chest disease,” and Betty Ford, wife of President Ford, caused a sensation in the 1970s when she publicly stated that she had breast cancer! But breast cancer patients were not considered to be responsible for their cancer; by contrast, many anal cancer patients find that one reaction to their news is “oh, kinky sex!” The word “anal” is just an “un-mentionable.” Talking about it, and the rigors of the treatment, is very difficult, even with close friends and family.
Added to this is the rarity (fortunately) of this cancer, although it is on the increase despite the availability of vaccines against HPV, which is considered responsible for at least 90% of cases. (The National Cancer Institute reports that 8950 cases are predicted for 2020, although still just 0.5% of all cancers). A newly-diagnosed patient will rarely find a personal contact who has had this cancer – in the ten years since my diagnosis I have only known one other person in my city of nearly one million people.
At the time of my diagnosis it was very difficult to find any information, in print or online, about this cancer and how to manage the treatment and the recovery. (In frustration I created a website, “anal cancer help,” to at least provide one small point of information, particularly drawing on medical sites.) About two weeks before I finished treatment the Almada family established the HPV and Anal Cancer Foundation in memory of their mother who perished from this cancer; I learned about it several months later, and how I wish I had been able to benefit from the support group they founded!
Recovering patients and survivors trying to be thrivers can help to fill the knowledge and compassion gap many new patients will experience. Some will have found a helper during their own passage…many will not. Regardless, you have unique knowledge and comfort to share. Your medical team has some insight…but unless they have personally experienced this cancer, it is not the same insight. And for you, there is little more satisfying than being able to reduce the uncertainty – the fear, even – that a lonely journey through this cancer brings.
Sign up! You will be happy that you did…and those you help will be even happier!
Please consider if you can support this important work. Sign up as a volunteer for the Peer to Peer Support Programme or read the most frequently asked questions here.
