On November 6th of 2014 I received the diagnosis of anal cancer. I was 63.
18 months prior I’d had a completely normal, routine colonoscopy. (My gastroenterologist and I both looked at those images after the fact and saw no evidence of a tumor.) Go figure!
Eight months into a new marriage I began having rectal bleeding. I ignored it for several weeks, believing it to be from a hemorrhoid. I didn’t know it at the time, but I was fortunate to have bled heavily enough that it sent me back to the GI doc once more, who ordered a sigmoidoscopy. I awoke from that, being wheeled down the hall to MRI. Three days later I had the answer. Happily, it was stage 1.
My oncologist was straightforward, saying anal cancer at this stage was “very treatable”, but it would be “a rough 6 weeks”. It was. I had what was called “a robust response” to chemoradiation. I spiked fevers, had the full range of mouth sores, blisters and swollen gums. I had massive diarrhea and could not manage to stay hydrated, so I had IV hydration at home. My chemo port became infected and a Pik Line was installed instead. Skin on my bottom broke down. It was pretty miserable.
Before treatment began I reached out to The HPV and Anal Cancer Foundation for a peer support. Interestingly, I can not remember her name, but she was an invaluable presence. With her encouragement and validation of my feelings, I settled into being patient, asking for help when I needed it and forgiving myself for being sick. She is the one who allowed me to NOT always be strong, when all I heard was “stay strong”. She understood why I didn’t like hearing “you’ll be fine.” Somehow I felt that diminished what I was going thru. I also had to make peace with the possibility I wouldn’t be ok. She told me to expect many months of not feeling well after treatment ended. That was such helpful information. Until I heard that from her, I had thought I would start feeling better as soon as treatment ended. No one in my medical team had told me otherwise. Because of her, I knew what to expect.
Eventually I did recover, although not without some lingering side effects of treatment, which is another possibility I wish had been more openly discussed. My best advice is to ask the hard questions, accept help, get support and be as open as possible about your diagnosis. There is no shame in this disease, and we must all work to erase the stigma that still exists.
Nex year I will celebrate 10 years NED! I will add So Africa and Zimbabwe to the list of more than a dozen countries I have visited since ending treatment! I am a Thriver!
