JWT - Volume XXIX
Joe’s Wolfpack Trailblazers
Joe Bullock and Trevor Maxwell
September 2022
Shortly after I was diagnosed with stage 3b colorectal cancer in May 2018, I started seeking therapy because with the diagnosis came depression. Something very common to someone diagnosed with cancer. It’s also something that is hard for men to ask for support to treat. We typically self-isolate or gut it out. It’s also where I found myself during chemotherapy treatments for my cancer.
I reluctantly decided to see a therapist to treat my depression. I slowly started to seek support through a couple of online support groups. One being Colontown.org where I met Trevor Maxwell. My time with my therapist was helpful but she told me such ‘social media‘ friendships would not be sustainable or support my survivorship. Once she found out the work I had been doing with Trevor and that I had been meeting with a few of our members locally and in person. I think I might have changed her mind.
Two and half years ago Trevor invited me to the Man Up to Cancer - The Howling Place group, a Facebook group he created as a part of his Man Up to Cancer platform. It’s a place for men to seek emotional support in the face of cancer. Shortly after joining he asked me to become the lead administrator of the group and I gladly accepted. He talks of building a community to hopefully prevent men from self-isolating during cancer treatment. We both understood that this is a deep struggle for men going through treatment for cancer.
One of the ultimate goals was to have an annual retreat for the men in the Facebook group to come together to meet in person and celebrate their survivorship. For me personally it was time to put down the phone and shut down the laptop. I had spent so much time in front of those electronic devices building the group. For me it was healthy to spend time strengthening the relationships I had come to know in the group. Because of the advice from my therapist (and a nudge from Trevor) I decided to do that to strengthen my relationships in the group and to support my survivorship.
I left the Gathering of Wolves event that weekend with a renewed sense of purpose that no man should have to self isolate during the treatment and survivorship of cancer. I also realize that I can't reach everyone and no man can remain on an island by themselves. As a leader in the community I have to believe that this brotherhood or Wolfpack can make it happen and I need to rely on them more to continue to help build this platform.
The first annual Gathering of Wolves event for Man Up To Cancer was incredibly impactful and life changing for the 60 men present at the event including myself. It is proof that these ‘social media’ relationships can be sustainable and impactful. We shared our cancer journeys around the campfire, enjoyed lots of laughs and remembered the ones we lost to this disease. We can never thank Trevor enough for creating it and giving us truly a place to howl. I can’t wait till next year!
In this month’s 'Trailblazer' I am featuring three members of the Howling Place Group who attended the event to share their thoughts about the event and how it personally impacted them. Thanks to David De Wilde, Jason Manuge and Jesse Dillion for contributing.
— Joe Bullock, lead administrator, Man Up to Cancer - The Howling Place (Also known as The Wolfpack)
David De Wilde
David DeWilde
Sint- Niklaas, Belgium
Testicular cancer
Never had I ever … - a story
This seems like a fairy tale, or a bedtime story, or a fantasy… I find it hard to believe that this trip has actually happened.
Firstly, never had I ever dreamed of having such a supporting wife… she has been there always, and she is my soulmate, supporting me in all my travels.
Never had I ever, been across the Atlantic,
Never had I ever, traveled completely by myself
Never had I ever, traveled as a wheelchair user
Never had I ever, driven in a side-by-side
… yet I was confident in all of this, because i knew I had your support
Never had I ever, eaten waffles with bacon, nor buffalo hot wings, nor hash for breakfast, nor Sarah’s amazing chicken dip (was that great or what!), had such amazing grilled chicken, peeps, the food-list goes on…
Never had I ever, had someone waiting for me at the gate of the airport, standing there to welcome and embrace me… a memory I will cherish forever, Danny
Never had I ever, met someone that I admire as much as I do Trevor, for him to take me in his arms as if we had been friends forever, that moment cannot be described
Never had I ever, driven on a strange driveway, feeling I was coming “home”
Never was I ever, as moved at meeting someone so powerful, strong and loving as you Joe,
Never had I ever, met a Canadian, Don, you were the very first, and I’m glad it was you
Never had I ever, had the joy of meeting someone with whom I felt an immediate connection, Chris Taylor, that’s my shout out to you my brother
Never had I ever, felt such a profound welcome, such a recognition, such a deep friendship, such an understanding of brotherhood, as when I saw Michael
… by now tears are flowing unstoppable… and my list is not near long enough, you guys were all amazing
Never had I ever been the referee of an international competition
Never had I ever had someone listen to my extremely nerdy archaeology chatter, yes that’s you Jason
Never had I ever been invited to be a part of such an amazing accomplishment, as walking the last of 10000 miles.
Never had I ever been helped dealing with my disability, where not a single person made me feel as if I needed “special care”. Taking me around, bringing my wheelchair, giving me a much needed push, holding me steady, helping me in the shower or getting dressed… this was just how things were, this was “taking care FOR” a brother without “taking care OFF” and everyone made that abundantly clear.
Never had I ever, felt that my disability wasn’t a burden to the group, but just one single aspect of me
Never had I ever been on a Men’s only retreat, and if you would have told me 6 month ago, I wouldn’t have believed you
Never had I ever seen a quilt, now I have the most precious one in the world, thank you Scott for thinking of me
Never had I ever, have someone give his own backpack to me… a gift out of friendship, it was something no one had ever done for me before
By now I’m sounding like a poor little sad man, but that’s honestly just the truth of it. I was one of those men who was down on the floor, and you reached out and grabbed my hand.
Never had I ever been shouted out,
Never had I ever felt appreciated for who I am, by “friends”… I didn’t realize this, but I had given up on friendship, I was convinced friendship just wasn’t meant to be for me… you all proved me wrong big time. There are simply no words to describe the warmth of feeling “valued”
So…
Never had I ever understood the meaning of friendship
Never had I ever had the honor of reading and hearing the names of people lost, with tears freely flowing, but also with a fierce determination to never let someone walk his path alone
To say this gathering was a unique experience, is selling it short… it was -in one word- life-changing, more than one could imagine.
Never have I ever been so fortunate and grateful to be part of a group, honored to be part of your lives, humbled to have such wonderful brothers being part of mine.
Jason Manuge
Jason Manuge
Kingston, Ontario, Canada
Stage 3 colorectal cancer
This past weekend, I had the privilege and honor of attending Man Up to Cancer‘s inaugural Gathering of Wolves in Delevan, New York.
It was a sacred and special event for so many reasons, but being able to be a part of the first one is an experience that I will never forget. Around sixty men, spanning countries, ages, and types of cancer came together to share our experiences, swap stories, and finally meet each other face to face after all of the Zoom calls, private chats, and Facebook interactions we’ve had with one another.
The profound, transcendent effect this will have on my life will not be adequately communicated through words and pictures, but I’ll do my best to give a taste.
Trust and Vulnerability
So much of the event was centered around people sharing stories and talking about some of the hardest struggles (and funniest moments) we’ve undergone as a result of our diagnoses. This is, obviously, a very private and personal thing so I won’t betray the trust by sharing details. I will, however, be putting together some of the lessons that I learned from folks over the coming days.
Conversations ran the gamut from the serious, heavy topics to the lighthearted and fun. But the degree to which we felt comfortable to share with each other was really touching and made the event something special.
Brotherhood
I truly feel like I understand what it’s like to share a revered kinship with a group of people.
The closest paradigm I can think of would be a bond between people who’ve been through the shit together. First responders, soldiers, and the like are thrust into situations that only firsthand experience can understand.
In that way, it’s not what’s said that makes the bonds strong. It’s what doesn’t need to be said.
There are three words that ultimately brought us together: you have cancer. And to be around those who’ve also heard those words is to have an inherent understanding.
Through the Gathering, I know that I’ve strengthened friendships that will last a lifetime and formed new ones that I will always hold close to my heart.
Perhaps like the bond of soldiers, there is also a somber reminder that some of these friendships may not last long. Cancer, like war, ends lives too soon. It’s a very real possibility that some of the men I’ve come to know and love may not be around for the next Gathering.
That so many people were willing to share the irreplaceable gift of time was really moving.
Tradition
I mentioned earlier that this was the inaugural Gathering and, as such, was a chance to solidify some of the traditions that will be a part of future get-togethers.
The Challenge Coin
One of these traditions will be the gifting of a challenge coin at each event.
The challenge coin’s origins are rooted in military history. Without going into extraneous detail, the coins have historically been used to show proof of membership in a particular unit, participation in an operation, or have been exchanged by members of different countries to symbolize camarade and loyalty. Other examples include organizations like Alcoholics Anonymous, who award coins as members reach sobriety milestones.
The Gathering of Wolves challenge coin is a reminder of one of Man Up to Cancer’s key messages: Keep Fucking Going.
On social media, the hashtag #KFG is used by members of the group as an aide-memoire to inspire and connect with others that are having a hard time. We must remember to keep fucking going. Life is worth living. There are a lot of experiences to still be had, in spite of how difficult cancer can get.
The challenge coin is a physical token of this message and will accompany me to my important appointments.
The Remembrance Ceremony
There is a famous, unattributed quote that reads:
“They say you die twice. Once when you stop breathing and the second, a bit later on, when somebody mentions your name for the last time.”
The annual remembrance ceremony is an opportunity to speak the names of those who’ve died. It’s a way to honor them and, in a way, to immortalize them by keeping memories of them alive. We took turns speaking the names of approximately 130 of our brothers.
Even though I’ve only been a member of the group, there are already members who’ve impacted me that are no longer living. Such is the way of groups that include people with terminal illness.
Having been able to participate in the first one, I can say with certainty that this tradition will be one of the most important and sacred.
As part of the event, each attendee was also provided with a lantern which we will light at home in memoriam when one of our pack brothers falls.
The Banner
There are so many exceptional men in the group who are doing extraordinary things. We want them to have the pack with them as they accomplish their goals. A few of our members created a banner that attendees of the Gathering signed so that we may be there with people who are doing remarkable things.
One example from the Gathering is that we were able to walk the final leg and share in the celebration of one of our members whose goal was to walk 10,000 miles (16,093 kilometers) in a single year.
Another group of men are holding a fundraising event at a brewery in Nanaimo, British Columbia to fundraise for chemotherapy backpacks to be distributed at no charge to cancer patients, while also supporting the development of a men’s cancer retreat to be hosted on Vancouver Island.
Their fundraising goal was to raise $3,000. They’re currently sitting at $22,000 raised. That’s not a typo. The banner (and, as a result, the pack) will be there at the event on September 24th.
Here’s a picture from before we all signed it:
A life-changing experience
Without a doubt, this will be an event that I’ll remember for the rest of my life. I can’t imagine that anyone who was able to attend would think differently.
Through great conversations that spanned the gamut of emotions, we reinforced the importance of camaraderie and brotherhood as we all navigate the hellscape of cancer.
These are the types of bonds that will withstand the test of time, help to lift and inspire others, and prove that men—when they allow themselves to be vulnerable—are stronger and better for it. Hence the Man Up to Cancer Motto: Open Heart. Warrior Spirit.
Whatever your current challenge or struggle, just remember to Keep Fucking Going.
Jesse Dillon
Jesse Dillion
Head and Neck Cancer
Erie, Colorado
I am still trying to find the correct words to be able to convey what exactly the GOW event did for me.
And the only word that comes to me is....
Transcendent
I had a lot of apprehension about going at first, and not because I didn’t think it would be worth it, but because I didn’t think I was deserving.
I expressed my apprehensions because I felt that everyone was so much tougher than I was. I felt I didn't deserve to be a part of such an amazing group of guys.
Being a part of “The Howling Place” for the past 2 years has taught me a lot of lessons that I couldn’t be more grateful for, but it wasn’t until I met my fellow packmates at this gathering did those lessons get driven home.
I found myself staring in awe at all the guys that get up and fight this beast every single day, and despite the cards they have been dealt, they are always willing to lift that next person up and make sure their mental needs are met.
Even though my battle was extremely difficult, I empathize with these men. I couldn’t imagine having to go through anything remotely close to what they had to endure. But, seeing their zest for life and their ability to live in the moment no matter what was a lesson that I needed to learn.
I still have unrealized trauma from the battle that I had with cancer, and that seems to always manifest itself in the form of anxiety.
The fear of the unknown;
The fear of recurrence;
The fear of ongoing and worsening side effects from chemo and radiation.
This, coupled with the pain of losing some very close friends from the group caused me to take a step back and pause. I really had to contemplate if it was a challenge that I was up for.
So many of the conversations that I had with other thrivers and survivors had one common theme…. We had all had friends and family abandon us at the time that we needed them the most.
Whether it was because they couldn’t stomach seeing us in that condition, or they simply thought we were being overdramatic, they didn’t see us through.
The Gathering of Wolves event allowed me to step back and realize what my real purpose in life is….
To live every day in the moment for those who can’t, and to share love with everyone, especially those who think they deserve it the least.
That’s what this event does. It allows those of us who are strong enough to carry those who aren’t.
In a season where all of us are surrounded by cancer, this allows us all to take a break from it.
Allows us time to heal. Allows us time to reflect. Allows us time to forget about cancer and just live life again.
We are brothers for life, whether that is for 2 months, 2 years, or 2 decades. We are here. Lean on us.
Let us help carry you when you just can't take one more step.
“If you cannot find your way out of the darkness; I will sit with you and show you the stars” -N.R.Hart