In June 2004, 47-year old Claudia Makowski was diagnosed with Stage 3B anal cancer. She had lost her mother and sister to cancer, but no one in her family had a history colon or rectal cancer. In fact, anal cancer was rarely diagnosed in those days. “My team of doctors had to research to find the proper protocol for me, as it was a very rare cancer in those days,” she recalled. “I was one of two people in my state that year to have this type of cancer. The other was a man.”
Claudia had a port installed, underwent multiple surgeries, received chemotherapy and radiation and faced a host of side effects. She learned to eat again, regained her balance and learned to walk again. She grew accustomed to the chemo-induced tinnitus she now faces – and jumped fully into her role as an advocate and champion for patients facing anal cancer.
“Having cancer is hard, finding help shouldn’t be.” She founded Anal Cancer Chat, a closed Facebook group that offers community and support for women who have gone through/are about to start treatment. Today, the group boasts more than 200 member “sisters,” who hail from around the world. They’ve begun expanding to offer groups for men, clinical trial participants, and for “sisters” at the end stages of their fights. Through it all, her work has one focus: “to create a safe, non-judgmental place to offer as well as receive support.”
Today, Claudia has decades of experience discussing one of the least-discussed, highly stigmatized cancers. She and her team have built on their personal experiences, compiling a wealth of information that they share with patients facing an anal cancer fight. Their suggestions are as wide-ranging and practical as they are personal, including:
- Go to radiation treatments with a fuller bladder than normal to help protect internal organs from damage. Ask for creams and ointments to combat burns.
- Talk to your doctor or gynecologist about dilators and exercises to fight painful scarring during and after radiation.
- Invest in a sitz bath. Use baby wipes and avoid alcohol-based cleaners.
- Fight bouts of diarrhea with the BRAT diet (banana, rice, applesauce, toast)