Hello fellow Warriors! My name is Michael H., and this is my story. In the fall of 2020 I had been struggling with hemorrhoids. My GP was giving me suppositories and other medications, but nothing was bringing any relief. In January 2021 I got a referral to a surgeon for a hemorrhoidectomy.
I am sure you can guess the rest. My operation was on January 7. The results came on January 14: anal cancer. I had not really heard of HPV or anal cancer. This was a shock to me. My surgeon was a kind man and helped guide me on what I needed to do to deal with this.
I was directed to an Oncologist and a Radiologist Oncologist. I should have followed my instincts and not gone back to the Oncologist. However, my Radiologist Oncologist was wonderful. He explained my course of treatment and what to expect. My Oncologist did none of this.
I was scheduled in March for oral chemo for six weeks (Xeloda), two infusions, (Mitomycin), and radiation for five- and one-half weeks. I was nervous, I tried not to focus on what lay ahead.
I discovered the Anal Cancer Foundation and a couple of valuable Facebook groups. These were to become my coping tools. I requested a mentor through the Anal Cancer Foundation and was matched with a person who completely understood where I was. We remain friends to this day.
The Mitomycin and Xeloda made me very fatigued, but I did not get sick. I was prescribed a lot of RX for nausea, which didn’t work for me. I had done a lot of reading and decided to try Edibles. This action worked great for me.
My radiation journey, perhaps like many, was a breeze for the first three weeks. Then it wasn’t. I started getting unpleasantly surprised with out-of-the-blue poops. I was so tired I needed someone to drive me to radiation. My husband and friends stepped in. I will always be so grateful for the kind help I received.
I felt terrible, and this out-of-control pooping was really doing a number on my self-esteem. I made an “emergency kit” that was always with me. This contained extra depends, clean wipes, plastic bags to put the mess into, and extra sweats. This really upped my self-esteem and made me feel more secure.
I ended up with Syncope, dehydration, and severe fainting spells. This required a week in the hospital. My GP referred me to a Cardiologist because the hospital stay didn’t stop the fainting. The Cardiologist put me on a monitor and determined after four days I needed a pacemaker. This was done immediately. My fainting issue was solved.
I explained all of this to my Oncologist, he denied “his” chemo caused any of my side effects. My GP, Cardiologist, and Surgeon were sure this was directly caused by my chemo exposure. I was getting to the end of my rope with this guy. He never even did an examination on me. I tried to change doctors and no one in his group would take me. My Radiologist and other doctors continued to be kind and caring, he was never those things.
Anyway, my recovery was slow and a little ugly, extremely painful constipation and then out of control diarrhea. I was also very fatigued.
I am now 5 months out of treatment. My life is getting back to normal. My scans have been clean, I get a 6-month PET scan in January. Any little ache or pain causes me worry sometimes, of cancer returning. However, belonging to the ACF and my Anal Cancer Facebook groups helped me understand my feelings were normal.
So, my life is pretty darn good. I don’t focus on “if” my cancer will return. I do focus on how blessed I am and how good my life is. There is still the very occasional accident, but I know how to handle this now. I still have weird poops sometimes but am thankful they are not usually surprise poops.
In closing, I believe I am a better person because of my cancer experience, I find myself gentler on myself and others. I really appreciate the beauty I see around myself. I am a proud Thriver Warrior, ready to take on whatever comes my way. Best to all of you Warriors!
I did fire my Oncologist.
Looking for someone to talk to about your anal cancer diagnosis? We are here to help. The Peer to Peer Support Program is a free service provided by the Anal Cancer Foundation that matches anal cancer thrivers (our word for survivors) and caregivers with thriver volunteers and caregiver volunteers.