Men Facing Cancer Need Support: Man Up to Cancer is There
By Michael Holtz, APR, MPRCA, Man Up to Cancer
In my cancer advocacy life, I’ve had opportunities to do some amazing things.
I’ve shared my cancer journey on stage in front of ballrooms full of people. I’ve spoken at congressional research briefings. I’ve trained hundreds of cancer advocates to use their voices and share their stories to impact cancer-related policy. I’ve been interviewed hundreds of times by members of the media about my cancer journey and work as an advocacy volunteer.
Nothing prepared me for the incredible experience I had at the second Man Up to Cancer Gathering of Wolves in upstate New York in early September 2023…
But first, a little backstory.
I was diagnosed with stage-IIIB rectal cancer on March 27, 2012, just five days after my 43rd birthday. The cancer was discovered during a colonoscopy that was recommended by my primary care physician because I was experiencing weird digestive symptoms and ultimately saw blood in the toilet. The scope revealed a three-inch aggressive adenocarcinoma on the wall of my rectum.
Over the next 11 months, my medical team threw everything at the cancer. Oral chemotherapy (Xyloda) combined with radiation treatment, surgery to remove the tumor, and six months of adjuvant chemotherapy to ensure any cancer floating around was destroyed. I finished treatment in February 2013 and was declared No Evidence of Disease three months later. Still, surgery left me with a permanent colostomy and chemotherapy gave me neuropathy, high blood pressure and, most recently, hearing loss.
But I’m still alive, and I’m not alone. That was the impetus for the Gathering of Wolves.
Man Up to Cancer was founded by Trevor Maxwell, a writer from Maine who was diagnosed with stage-IV colorectal cancer. As a man facing cancer, he searched for but could not find mental health and support resources specifically designed for men. Maxwell found himself isolating from friends and his wife as treatment went on. It was during a bit of a personal crisis that he devised the idea to create an organization for men in similar situations.
Man Up to Cancer launched The Howling Place, a private Facebook group for men facing caner, on December 31, 2019. The group is open to men in the thick of treatment, have survived, or are caring for someone with cancer. The idea started small, as a place to help men connect with each other. Today, more than 2,500 men have joined The Howling Place. In addition, more than 30 MUTC regional chapters have sprung up across North America; a backpack program was launched that provides men in treatment with practical care items during chemotherapy, immunotherapy and other cancer treatments; and there was the second Gathering of Wolves. A third is already being planned.
By the way, all these services, including the Gathering of Wolves, are provided at no cost to members of the Man Up to Cancer community.
Man Up to Cancer relies on the support of individual donors and corporate sponsors to help men facing cancer. Learn more at www.manuptocancer.org.
About 110 men from the United States, Canada, and one amazing guy from Belgium, gathered at Camp Duffield in Delevan, N.Y., for a weekend of connection and storytelling.
As an 11-year survivor, for me the weekend was about listening to men who shared their journeys and what they’ve learned about life since the words “you have cancer” ended the lives they were planning. Some shared publicly for the first time. Others have shared before, but not in the context of a bonfire in the middle of the woods.
There’s something sacred about that.
Honestly, I questioned whether I belonged. First line treatment worked for me, and I was finished with treatment. So many of the men at the gathering are deep in the fight. Chemo-for-lifers who are on their 60th, 80th even 140th round of chemotherapy. By comparison, my regular bout with neuropathy in my feet is a nothing burger.
In the end, the Gathering of Wolves isn’t about who has it worse on the cancer journey spectrum. It’s about building relationships. Most of the men in attendance are guys who know each other from The Howling Place. We’ve supported each other through comments and posts. Some of us have texted or sent notes through Messenger. Others have connected regular on Zoom or through in-person meetups. And some of u have met in person through our various cancer advocacy activities.
I spent much of the weekend in the company of my best friend, Ryan, a stage IV colorectal cancer survivor from Denver. Being together, in real life, for an entire weekend was incredible. Hugs abounded. As did words of affirmation. Men, most of whom met in real life for the first time, told each other “I love you.” Over and over again.
Men – all men – need this kind of connection. It shouldn’t take facing cancer to realize this.
Our cultural norm expects and almost requires men to be stoic and heroic:
Be John Wayne. Be Superman. Gut through the pain. Push it down. And, above all else, keep it to yourself.
The danger in keeping your struggle with cancer – or any struggle, really – to yourself is that it screws with your mental health. In a study of 15,000 people, cancer was associated with elevated anxiety levels and lifetime incidence of depression. Most alarming, of the more than 13,000 people who commit suicide after learning of a cancer diagnosis, 83 percent are men.
Talk therapy can work, for sure. As can support groups. But those support groups need to be for men only.
I’ve been part of coed support groups and I was glad to be part of them, but there were things I wouldn’t talk about in a room where 90 percent of group members are female. In group I was perfectly content to talk about colostomy fails. I could get a laugh out of my group mates. But talk about the body dysmorphia that accompanies colostomy life. No way.
I wasn’t afraid to admit my anxieties, but other people had it worse than me. So I didn’t share them often. And that thought can be deadly.
Leaving the Gathering of Wolves was difficult. We were on sacred ground. I had found my tribe. And reality is that some of us may not live to see the next Gathering. I needed to wrap my arms around one more guy’s neck and tell him I love him just in case I don’t get the chance to do it ever again.
Man Up to Cancer didn’t exist when I was diagnosed in 2012, but I sure am glad it exists now. I wasn’t entire sure what I was getting myself into when I became a member when The Howling Place was launched that New Year’s Eve four years ago. What I’ve gotten in return cannot be calculated.
Every man with cancer deserves to be heard, to be loved, to know that there are other guys in his corner. They need to know they are not fighting alone. If you’re a man facing cancer or you are a long-time survivor, or you’re a caregiver to someone with cancer, Man Up to Cancer has a place for you.
Learn more about Man Up to Cancer, our services for men facing cancer and how you can help at www.manuptocancer.org.