Simplify Cancer

Simplify Cancer


Simplify Cancer Podcast Episode 087: Patient to Patient Movement with Trevor Maxwell

November 20, 2022

Hello, my friend, and welcome to Cancer Can Give! in this special series of the Simplify Cancer Podcast, we share inspirational stories of people who went on a grueling journey through cancer and yet, they found their own way to live, grow and give in a way that helps others. Today, it is my absolute pleasure to speak to Trevor Maxwell, a proud man, men’s health champion founder of the incredible Man Up To Cancer.


Links


MAN UP TO CANCER


Man Up to Cancer Podcast


Man Up to Cancer – The Howling Place – Facebook


Man Up To Cancer (@cancerwolves) • Instagram


Video



 


Full Transcript


Glad you can be here. Let’s talk to Trevor. Great seeing you.


Thank you. again, thanks for your patience and willingness to speak with me. The cancer journey is full of bumps and crazy turns. Then when you become an advocate, things kind of like the map to cancer movement has kind of been taken off. Just kept me super busy. I appreciate it.


 


I was so thrilled to have you so thrilled to talk about you and your story. I really want to I first of all, I want to go back in time. I want to go back in time, what was life like? What was life like before cancer?


Life was great. I was 41 years old. My wife and I live here in Maine, on the on the Atlantic Ocean, basically, about a couple hours north of Boston, and been here most of my life. We have two daughters. sage, and Elsie, they were 12 and 10, at the time of my diagnosis, and everything was just trucking along. Before cancer, I was a pretty healthy guy very active. just enjoyed all the outdoors. Living here in Maine is a great place for the outdoors. I was a journalist for many years. Then, at the time of my diagnosis, I was doing my own public relations, consulting, just like a one-man company. My wife was a teacher, and the girls were just going through school, and it was like prime of life. It was good.


 


You’re on a kind of trajectory through life. Things are going your way. Then it just hits you, so tell me the moment. How did you find out?


You’re right, you’re just kind of going along, and you have all these like illusions in your head, you tell these stories yourself. I’m going to live till I’m 80. I’m going to see my grandkids you just have this imagination of what the steps are. Then cancer comes along. I say, sometimes I use the phrase life asteroid, because it’s an asteroid has hit you and your family. It’s like my God, I went from a 41-year-old mid middle of life, dad and husband and worker to “a cancer patient” facing metastatic colorectal cancer at age 41. With young children, and boom, life asteroid.


 


That’s a beautiful way of putting it because exactly. It is like an asteroid that just blows up into your world. What was what was the biggest change for you, Trevor?


I mean, I think at first it was just real physiological shock. People don’t talk about that enough. The shock to your system. It’s like you’re in the matrix. Then one day you realize oh my gosh, this might kill me like and soon so there’s the shock. I went into a period, a period of deep mental health struggle so I think the biggest change was like I’d always been a pretty positive person, outward person I struggled before cancer a little bit with typical depression, anxiety so many others do. When cancer hit, and the idea of possibly dying at a young age and leaving my kids behind, and my wife behind, it just crushed me emotionally. I went into a pit of despair man, clinical anxiety, depression, the whole works like I was on the floor. There was a lot of days when I would just be even functioning. It was that bad. I thought I was going to have to go into the hospital for my mental health, not even my cancer. Right. For the first thinking like six to eight months of my journey. It was it was like a pit, and it was crushing. It was just emotional turmoil.


 


I’m so glad that you brought this up, man, because it’s something that does not get talked about.


Mental health, with cancer, my God, I’ve gone through five major surgeries, more than 50 rounds of chemo and immunotherapy. All this stuff, like countless blood draws the whole physical stuff, and none of that, that all of that is minor, compared to the emotional challenge that I faced as being a relatively young dad and father going through cancer and you’re right. That’s one of the reasons why Man Up to Cancer exists and why I am a patient advocate is that mental health and those challenges are not talked about nearly enough and especially among men.


 


It goes straight to the core of your identity as a man as a father. It just throws everything up. We’re going to talk about man. I want to know you went into that pit. I know what it’s man. You stand on the edge? You look down into the abyss. What was it like and what’s helped?


It was it was hell; it was like literally being in hell. I am. Here’s what helped, love. My family. For a guy who got stage four cancer at 41. I’m honestly the luckiest guy in the world. I have a wife and two daughters who just loved me through it, I wanted to go away. I didn’t want to be a burden to them anymore. I’m leaving, I’m going into the woods. I just I can’t. My identity was just destroyed. I just wanted to protect them. I didn’t want to be a burden anymore.


I’m leaving. They’re like, “Hell you are.” My wife really was they all gave me that like that love. My wife gave me that tough love of being like hey, you need to get help. Like I don’t care if you live another year or another 40. Like we need you to be back engaged with us, we need you. You can’t just check out. That was tough to hear. It was what I needed to hear. that’s really when I got over the first barrier, which is usually the barrier for men, when they’re facing this type of life asteroid, which is accepting help accepting that you can do it on your own.


Like I reached that point where I realized my anxiety, my depression, the cancer stuff, I could not do it on my own. That’s the point, probably about six months in when I really started reaching out for the supports that I needed to get out of that pit. That pit is huge man., I know that people try to climb out of there on their own, but it doesn’t, it usually doesn’t happen.


 


That’s one of the things that I certainly regret not doing going through cancer is not getting that help. Not getting it early enough. It’s because it’s like its cancer. It’s like supposed to be tough.


We’re taught not to need help. Most of us are raised kind of as men to that that rugged individualism like I can handle this, I can handle my business, I got this. In some things in life, that’s not bad like home projects, etc. I will say like with cancer, I cancer just crushed me in a way that no other challenge had. I reached out for counseling.


I reached I went to group counseling, individual counseling, I started meeting people online, who were going through the same challenges I was with the same cancer type, kids with cancer. That’s where I found kind of the magic of that patient-to-patient movement and learning and because I was totally isolated. Then through online social media and through my counseling, which is here locally. I wasn’t isolated anymore. that’s when I started to be able to climb out of the pit.


 


You’re talking about counseling. I think one of the things that scares people away, I know it certainly scared me away that counseling or working with a psychologist. It’s because you don’t know what to expect. can you talk a little about what’s that’s like?


Totally. I mean, fortunately for me, I actually had a background like I had gone to counseling prior to cancer for just life and anxiety and relationships with my family. I kind of had a sense of what it was going to be like. You’re right, a lot of the guys in my group have that resistance are hesitant to talk about it. You know what, and I will say, if that’s not your thing, fine. there’s plenty of tools in the toolbox. Counseling is just one of them. I mean, there’s fitness, there’s exercise, there’s nutrition, there’s meditation, there’s, there’s all kinds of tools that you can use and, and the online communities.


There are all kinds of tools that you can use to avoid isolation, counseling just happened to be one that really, really worked for me. Honestly, you just go in there and you’re, you’re the one doing the work. You’re the one like sorting through, you’re the counselor’s job is to just absorb it, and like maybe give you prompts, maybe give you some ideas, some homework, just to move the process along. You’re the one sitting down in that judgment, free space, just being able to say all the stuff like so for me, I didn’t want to sit here at night and talk to my spouse or my close friends about the real shit that I was feeling about cancer.


I could go to this person who’s a total neutral party and say the things that I was terrified to say, I feel like I’m going to die. I’m my will to live is pretty low right now that stuff that is like really vulnerable. That’s where I would do it is there, and I felt like to get that out. Sometimes even just getting that out, getting those emotions out and just being able to process them in a safe place. I know, that’s like a trigger word. For some people. That’s the safe place to do it.


Counseling for me, it was that and still is that place where, and sometimes I didn’t even know what I was going to say? I get to counseling. This is stupid. I don’t know what to talk about. I don’t have anything to talk about. I’m done. Then five minutes later, I’d be summoning up my like deepest fears and anxieties and stuff and like working through it. I mean, it’s not for everyone, but it’s a tool.


 


I love that you I love that you bring up the fact that in essence, you’re in control. It’s not like somebody did this.


Totally. You’re in the driver’s seat. You’re in the driver’s seat, you get to control all the work all the conversations. That’s a good point.


 


You said like the make you do stuff. It’s true that like you discover things about yourself. Sometimes you say things out loud that you go, my God, did I? Is that really how I feel? And it is.


Absolutely. I think there’s a lot of guys who, who think, “I’m not, I’m not like a sissy, I’m not going to go to counseling, and they’ll take away my man card.” My whole message is keep your toughness, you’re going to need every bit of your toughness to go through cancer. You’re probably also going to need to open up a little bit, you’re going to need to grow that heart muscle? It takes courage to accept help.


That’s what I’m trying to do is say whether it’s counseling, whether it’s meditating, whether it’s music we got, there’s some badass guys out there going through cancer, who also do music therapy, or paint, or have kittens that they’ll take care of to help them through this shit. It’s kind of like a new definition of masculinity is really to you can keep those traditionally masculine values, strength and assertiveness and leadership.


You can also just incorporate in some of the, some of the more heartfelt stuff to that and the more vulnerable stuff that doesn’t make you weaker, it makes you stronger, because you’re going to. You’re doing those things to be healthy to be there for your family to be there for your community. Right. You’re using the tools to like and to help your survival. People who isolate going through cancer have lower survival rates, this is a fact there’s plenty of research to back it up. That’s big part of my message is you can’t stay in your man cave. It’s not good for you, man.


 


So powerful man. It’s so true that it’s not just about you? For me taking that on was huge. Because you feel it’s, it’s about my wife, it’s about my son. It’s about being there for them and being a normal person, so that I’m not going to just go away and lock myself into my own world.


100% man spot on.


 


Absolutely. I love how you bring up the importance of connecting with people online, maybe sometimes in person today in this online world. Tell me about how that works. how does it how vital is it to have a community.


Oh my God, he’s in this community. Thank you for that question. This is you get me going on all my passion topics here. I was I was a total social media skeptic prior to cancer. I didn’t use the platforms very much like most people my age I had a Facebook account, but I didn’t really use it for anything. I’d post a couple photos here and there. I just thought it was political garbage. People judging each other and like fake bull crap. I was whatever. Then cancer hit. look, I was 41, I was facing a stage for colorectal cancer diagnosis with the young children, in my small town here in Maine, I couldn’t just go hang out with a bunch of people in that same way.


I really needed to connect with people who were facing a similar challenge. Like down to the level of being, we’re walking the same path, basically. I couldn’t do it right here in my hometown, and I’m like it’s online, where you can find these people. I’m going to give the example of Colon Town. Colon Town is a is a network or a collection of they call them neighborhoods on Facebook, it’s private, it is run by and populated by colorectal cancer patients, survivors and caregivers that’s the community. You in colon town, you can drill down specifically like I’m in these neighborhoods, for people with my specific biology of cancer. I’m in a neighborhood for people with young children, people who have CRC with young children, so and like all these different groups from what I needed, and then there’s like the downtown area, which is everyone.


Colon Town opened my eyes, and I met dozens you can meet people from across the country and across the world who are walking that path with you. Number one, that is just priceless, in and of itself. Then here’s the real crazy thing. Number two, a place like Colon Town isn’t just like a support group. It’s not just I’m here for you. I’m here for you to, that’s great. It’s honestly like a think tank is where I have learned so much about my disease. they have people who have CRC are engaged, who are scientists, and medical backgrounds.


They bring in doctors to do webinars and like do presentations and it is about empowering yourself to know about your disease, because I thought, naively, when I got diagnosed, that I was going to learn about my disease and my options, everything else from my providers. As it turns out, the providers are generally too overwhelmed. They are they don’t have the time and capacity. They’re serving hundreds of patients. it’s not malicious, they just don’t have the capacity to spend that extra time with you on your disease and like go search all around. If you go into a place like Colon Town, which for me with colon cancer I learned, it’s that patient to patient education.


I learned about my treatment options, people were like they don’t have this option for you where you are, but maybe they have it over down there at Moffitt in Florida, or at Fred Hutchins in Seattle or MD Anderson in Texas. All of a sudden, you start getting exposed to the like the latest and greatest options in the field. It’s just like a little like online laboratory. you get the best of both worlds, you get the exposure to the camaraderie and knowing you’re not alone.


There are people on them in there in their 30s/40s raising kids being diagnosed with this. then you also get the learning piece of it, which gives you the best chance at survival? Like I said, if you’re not out there connecting and learning from these other patients and hearing what is out there, you’re not giving yourself your best chance at extending your life and possibly even saving your life. I know many people whose lives literally have been saved because of information they got in online groups.


 


Absolutely, because that’s where you get to find out about clinical trials. Yes, that’s where you get to find out about so many other things. I’m so grateful that you are bringing this up man because it’s also a place where it helps you to get, I think, help with your mental health because for me I was going through testicular cancer and finding out about, talking to people about addressing some of those fears that I had about what life would be like after chemo and surgery after this. It’s a real thing that helped me to go on what, I can kind of see that there is a path to survive. There’s a possible path to live man.


Absolutely. That’s the power of community. Again, social media and the internet have opened up that whole new world it’s only recently that we’ve had the ability to do this. I can’t say enough about the patient-to-patient movement and what that means. Again, doctors, they can’t be expected to know everything all the time. A lot of them are just drinking from the firehose of information and trying, it’s tough, they have a tough job. In the past, there was kind of this paternalistic model of healthcare. It’s you go to your doctor, they tell you what to do, they know everything, but that the problem is, especially at the community level, in rural places, a lot of these oncologists or maybe they’re treating, all types of cancer? They’re not specialists in your type.


Right? I can get going down that rabbit hole all night. I guess the point is, patients have the ability to learn, it’s the same thing. Like if you were building a house, and you hired an architect that architect is going to be the quarterback of figuring out what your house should look like. you can read tons of books about architecture, you can learn about it, you can get empowered, so that you’re a partner in that so that you and your architect can have discussions like what, maybe this and maybe that. This idea of the Empowered patient, the old model being that kind of like they just told you what to do.


Now and I’m not talking about patients who just go on Google for a day and come up with some crazy ideas? I’m talking about like real learning, and real learning and taking that fear in colleges and saying, hey, I’ve we were talking about this in Colon Town. this, this new clinical trial, or this new drug? what do you think? And most oncologists that are worth their salt will say, “Let’s take a look at it. Let’s talk about it.” If your oncologist doesn’t want you to be part of your own care doesn’t want you to be part of saving your own life, you need to fire your oncologist.


 


I’m so glad that you bring this up. If you don’t feel like that person is clicking with you, whether that’s your oncologist or any other specialist, move on bring in somebody else, man,


It’s your life, it’s your life on the line, and no one even you’re even the best oncologist. They’re not going to care as much about your life as you do. you have a role to play. I don’t care what background you’re from, with, with the resources available and with all these other smart patients out there, you don’t need to learn it all yourself, you just need to find the right smart patients to help you.


 


Exactly. No one is more invested in your well-being your way of life than you are yourself. Let’s talk about us guys. You talked we spoke about men and we’re going to talk about Man Up To Cancer. You’ve spoken with so many so many men shall have what is it that makes us different? We have different needs?


Absolutely. I mean, we’re talking like 1,000s of years of biology and 1.000s of years of sociology like culture, and those things intertwine. Science shows us now that there are in general, we’re going to put the asterisk there in general, that the sexes respond differently to a cancer diagnosis and to a life-threatening illness. It’s one of the basic, it’s one of the most prominent gender disparities there is, and there’s tons of research on this. in all the leading journals, it’s been there. It shows that when facing a life-threatening illness, men in general, tend to isolate tend to withdraw from activities and people that they enjoyed, tend to have higher mental health problems, such as anxiety and depression.


There are consequences to that, which we’ve already discussed. The reason, the main thrust of why this is, is that we are brought up in most cultures, men are brought up to feel like they’re supposed to fix it. They’re supposed to be the fixers, you’re supposed to be the problem solvers. Then you’re confronted with this massive health challenge that you’re not prepared or equipped to face. There’s that shame where that comes up again, men feel this the shame about getting cancer in the first place. Then somehow, it’s a failure. then we tend to check out and women in general are much more comfortable accessing their social networks, they usually have bigger social networks to start with.


I remember a study that showed most American men don’t even have a single, close friend that they would confide their deepest feelings to not one, whereas women generally have at least three to four. Most times for the man, it’s the partner or the spouse, which is interesting? I think it’s just, it’s the way that we’re somewhat wired from the past, but also just conditioned in the present is to is to have this sense of mastery over our domains. When something when the life asteroid hits, all of a sudden that mastery feels lost.


I can easily feel lost, I did it, I felt lost. I think a lot of a lot of men do. I mean, I talked to so many men going through this. that’s definitely one of the common themes is, is that theme of feeling vulnerable, like an animal feels vulnerable when they’re trapped? Sometimes that response is just to go in the cave and or go away? Like I did say, I’m just going into the woods, I’m not I’m no help at this point.


 


When you talk about the animals, animals are part of a pack. That speaks. that speaks to exactly what you said. You then you go back to your pack.


Absolutely.


 


How did this Man Up To Cancer come up? How would it compel you to bring people together?


As I reached out for help, and got over that first hurdle of saying, I can’t do this by myself, I just it was, there was such a glaring gender gap in the support spaces in cancer land. Here in Maine, at my cancer center, there was always at least 75% women 80% women to 20% man who men who were engaging with those services. The services available are awesome. It’s not just counselling, it is massage and Reiki and nutrition and exercise class. all of its free. This is the Dempsey Center founded by the actor Patrick Dempsey, he makes all of this free to cancer patients and their families. You can go do all this stuff to support yourself, but very few men do. That’s the first place I noticed.


Then secondly in Colon Town, and other colorectal cancer spaces, colorectal cancer, people don’t know this, but it’s about 50/50 men and women. I think it’s maybe close to 55% Men 45% women who get it like people think it’s an old man’s disease. It’s definitely closer to 50/50 than people think. I’s also a younger disease than people think. There’s been a fair very an unsettling concerning rise in young onset colorectal cancer. There’s all that going on, too. In those spaces, Colon Town, Fight CRC, Colorectal Cancer Lines, again, I call it the three to one rule.


Three women for every one man. I just kept thinking where are the men? All that stuff, we’ve been talking about cultural conditioning, and how men respond everything, I didn’t know that at the time. You kind of have it in your head, because everyone knows the guy who they have something hurting them for like five years, and they won’t go see the doctor because they’re I’m fine. I’m fine? That typical male, we all know that from our stories. I’ve done it too we, I think a lot of men just have that resistance to even acknowledging that a problem might exist. I started to really understand what the problem was, and what some of the reasons are behind it.


I knew that there were guys out there suffering just like I was, and I wanted to be able to do something about it. That is really the genesis is kind of understood seeing the problem of this gender gap in cancer land. Then thinking, I know these guys are out there, how do we reach them? How do we find them? and then and then the coed issue. A lot of men feel uncomfortable or maybe ashamed, they don’t love being in co-ed environments, because they don’t want to be perceived as weak. If you go into Colon Town, and you’re sharing, and you know that all these women are reading your posts, you don’t want to go in there and be I totally lost my mojo I can’t I haven’t been able to have sex and cancer is ruining this and that, I think most men would say that is not a comfortable space for them.


That’s another reason why I was we need to meet men where they’re at. If we know that they’re uncomfortable in that coed setting, maybe we just need to give them a place for them. There are spaces for women. Then there are spaces for men. I’m going to create a community called Man Up To Cancer.  We’re going to do a Facebook group, and the group itself is going to be just for men, a place where male cancer patients, survivors and male caregivers can just go and totally be themselves, do not have to worry about that judgment or feeling uncomfortable around the opposite sex. We’re very inclusive it’s a men’s group, but if you identify as a man and your Facebook profile says, you’re a dude, then you’re in.


It’s not an anti-women thing at all, we love all the women in our lives. It’s just that men bonding with other men and having those rituals and that, that that space has been since the dawn of mankind. We’ve lost some of that recently, some of those rituals have been taken away from us, we don’t do as much of that anymore. really, this is like the old Lodge, or fishing trip or hunting trip where guys go out and shoot the shit. just it’s a cancer group. Yes, we vent about our cancer, we talk about the challenges, but we come from all types of cancers. We don’t do treatment, we don’t do sciency stuff it’s just about brotherhood, camaraderie, and knowing that emotional support, and that we’re going to have your back no matter what, no matter what type of cancer you have, no matter your age, no matter what stage. That’s where it came from. Now, Man After Cancer is the howling place group.


We have about 2,000 men from I think every state in the US, most of the Canadian provinces, Canada’s coming on strong in our group. We’ve got some Aussie brothers, Rob Miller and crew down there in Australia it’s small numbers, it’s early days yet, but to me, the numbers don’t really matter. yes, we’re going to grow, unfortunately, because there’s men who could benefit from what we do. To me, we want to reach those people who need us. Like I think about where I was at with my anxiety and depression and just isolated in 2018. Those are the people that I hope listen to my podcast, or pick up or hear this podcast and say, hey, what is that whole Men After Cancer thing all about?


We want quality of relationships. When you come in your family when your part of our group, you definitely are part of the Man After Cancer family. I do a podcast; I’m writing a book this fall. We have a website and social media. We just had our first annual gathering of wolves, which is going to be it is what we had our first but going forward, it will be an annual retreat. We had about 60 men their members of the group, from all around the US and Canada. We even had a guy from Belgium come shout out to David Deweil. We just had it, and it was just it was a wow, it was a transcendent experience, I think for most of the people, including myself, and we can’t wait to get back there next year. For the Gathering of Wolves in 23.


I thought I had a concept that would resonate with men out there because there’s not a lot of content, specifically geared towards men in the cancer space. Like I say there’s two types of content in cancer spaces. One is so positive that it’s so unrealistic. Like everyone’s running 5ks and raising money and everyone’s smiling cancer seems like a vacation. Then the second, the second type of content is soul crushingly somber. You have cancer. It’s we’re so sorry. We’re going to, we’re going to help you through this. It’s I’m not dead. Like I’m still here. what we’re trying to do what I’m trying to do with the public stuff around Men After Cancer is just kind of show the real deal. We’re going to show the highs and lows of cancer and everything in between, but it’s going to be real.


 


Absolutely, man. I just saw this you saw this profound need. I’m just also want to speak to the fact that you saw the way to communicate the way to so that people hear your message and can go, “I can get behind that. That speaks to me.”


I just had this idea. I’m going to do this cancer wolf pack. I was this is either going to go this is going to go one or two ways. People are going to be that’s freaking cool. I want to be part of the wolf pack. or they’re going to be this is the stupidest idea I’ve ever heard. What is this wolf stuff like who the hell is this guy? That’s why you need other role models and people to buy in. Shout out to my guy Joe Bullock follower number one, who has become the lead administrator in the Howling Place, which takes some pressure off me because then I can do all the other stuff the fundraising and the podcast, everything else. Joe bought in on the mission from day one. I say I put up the walls to the howling place, but he’s pretty much filled the seats like that guy is like the cancer Oprah, he knows everybody.


 


One thing led to another. That’s how things started growing. Right?


I mean, yes, we just we put out the invite, Joe connected with all his people. The two of us really just started saying, putting it out to the world, hey, we have this place. that’s, that’s just for guys. If you’re going through cancer, if you like our vibe, come check it out. People ask me, how hard was it to get men to open up in the group and show you their real feelings, be vulnerable and which happens on a daily basis, by the way, in the Howling Place. It’s not all like that, we have lots of lighthearted humor, we have an ongoing war about whether pineapple belongs on pizza. I’m a purist. I don’t believe that it does, but I think I’m in the minority. I kind of figured that you’d be a pro pineapple guy.


People ask me so was it hard to get them to open up? Once we gave them the space, it wasn’t hard at all, guys were ready. it was almost they were looking for a space to just come and howl and go tribal and like and just put it all out there say all this stuff. It’s kind of like counseling, honestly just saying all the stuff. What is said in the howling place stays in the howling place? People just felt like once they got permission. Then once they got role models, we’ve got so many role models in the group that are just guys’ guys, but like I said guys’ guys, but they are also we’ll share about what they’re going through. Once people started to buy into that role modeling, I mean, it was super easy. It is you don’t have to twist anyone’s arms to really, once they’re in there, they get it.


The people that don’t want to do that that’s fine to we got people who don’t share a lot, people just kind of keep it light, and they’re in there. I always say, the howling place is there for people on their terms. Men on their terms, you get out of it, what you want from it. it’s there for you on your terms when you need it, how you need it. if you need it if someone comes into the howling place, and they get something out of it, or maybe they can provide support to someone else for a little bit. Then they decide it’s time to move on. I’m like great man. Not everyone wants to be around cancer guys and cancer content all the time. I get that, it just happens to be my calling. That happens to be my purpose.


 


That’s what I want to talk to now, is that sense of purpose? How did that come up? How does that make you feel?


I just feel it’s just so aligned. I feel like everything that I had done in my life prior to just kind of fell a little bit flat in terms of except for my family.  Being a husband, being a dad, that was always like a core part of my identity. With like my professional life, I was a journalist, I did PR I loved what I did. There was always like a little bit of unfulfillment. Then all of the skills that I collected over 40 years before cancer, I feel it was kind of they were all meant to come into what I’m doing now. I’m just manifesting this new mission based on all the stuff that I was ready for, it was almost like the universe was okay, we’re going to throw you this challenge. we know you’re going to be able to do something here after you get out of that pit. That’s going to be special and help people.


Once I dug out of that pit with the help of so many people who loved me, it was I was shot out of a cannon, I was just ready to go. I was fired up and it didn’t happen overnight. Like there was a lot of healing that had to be done. I still go through normal valleys. I still have anxiety and fears and depression and thoughts that are tough. The difference now is I just don’t dwell there. Right. Like it’s not clinical. It’s normal it’s appropriate for what I’m going through. I kind of just felt like when I saw the guy problem, and I and I realized that I could be one of the people to help address it. That’s a problem that I can help with, I know that I can be a bridge to guys.


I’ve been told like that I connect with people from different backgrounds. I did that as a journalist, I can kind of find our common ground, no matter what backgrounds we come from, and finding that common ground, especially when you’re going through cancer just has given me the ability to make these relationships and bring people into the movement and inspire others. It was almost as if a lot of a lot of the stuff that’s happened, honestly, this is a big secret, Joe, I’ve been kind of winging it here. I did have an idea of what it could be or what it could look like.


I’ve also been in treatment this whole time, or in surgeries this whole time, I’m coming up on five years, since my diagnosis, and I have not had a stretch beyond a couple months of not having treatment or surgery. There was that to, which turns out was a great thing, because all of this Man After Cancer stuff, I had to develop at my own pace with the help of others and while I was facing stage four cancer, so a lot of it was just winging it. Then sometimes when you wing it, and you just trust that you’re doing the right thing I would just get up in the morning be Alright, I want to help guys going through cancer tell me what to do. By the end of the day, I had done like seven or eight things that were aligned with that purpose.


I don’t want to say that I was totally unconscious, but because I definitely had some like part of it. I almost feel like I was just putting the shoot. If I would just let it go and kind of go with it, that it would kind of take care of itself and the right people would come at the right time and find man to cancer and get involved. do that’s exactly what happened. Like I have so many people involved in Man After Cancer now and helping, leaders and it’s not just me, it’s not just Joe Bullock. Like it’s a big group of us now. Like that gave me affirmation that the universe was that my trust in the universe was valid.


 


That’s what’s inspiring is the fact that you were winging it? It’s kind of like a plane.


No, that’s exactly right. My counselor even told me that too. She’s it’s kind of like you’re just building a boat while going down river. the plane analogy works, too. Then I got to the point I saw obsessed with it is when she’s okay, Trevor, the boats pretty much built. You might like to make some refinements, but you’ve got a pretty nice boat, and you have a bunch of people on the boat with you. Maybe you can go lay in the hammock for a couple minutes. like take turns steering the damn thing. That’s totally the Wolfpack mentality, too. When I was on chemo last year 2021.


I did hideous what I call Kitchen Sink chemo, I was sick a ton. Pretty much incapacitated a lot of that year. Man After Cancer went along fine. It wasn’t just me. that’s the wolf pack mentality is you take turns breaking the trail. Then when you are not feeling or you need a rest, then you let those others lead. I think that’s the big transition for me now is to kind of see the big picture but empower others to who get it who like understand the message, who understand the purpose and the consequences, giving them the tools and just empowering them to say, hey, go do what you want to do, go run with this, again, because it’s not my thing. It’s not anyone’s thing. It’s all of us.


 


The change that you speak to, is what I love is that you, you got hit with cancer, it changes the way that you feel because some people say, I won’t let cancer define me. I feel like how it cannot, but it is. You don’t have a choice.


You don’t have a choice.


 


It’s here, it’s going to define you, but you choose how is going to define you. you choose how that how that that will direct your life, from this moment on and living with purpose. That’s what it’s all about.


And again, I just come back to love because I don’t believe that an individual can make that transformation without others and without love. Maybe they can I don’t know, just for me, I was transformed through the love of others, my friends, my family, my wolf pack. All of those people who have just loved me through this damn thing and that has empowered for me, to let the transformation happen like to learn to grow, I am a totally different person than I was before cancer, and in some ways, I feel like I’m a much better person. I feel like I’m more patient, more generous, more loving, more in tune with everything going on around me. The first year of cancer if you had said, but what about the Silver Linings like the gifts of cancer, I would have been okay, this is where I throat punch you. Still if I could trade it in?


If I could, if I could go back or not have cancer and not have to worry about my family and my kids. my girls are 17 and 15. Now remember, they were 12 and 10 When I was diagnosed, so to get here has been such a freakin gift. If you were to say like you could be cancer, free go without it? Of course, I would. I’m not going to lie to you and be no, the gifts of this are too good. I take it in a heartbeat. He’ll take away the cancer. I don’t have that choice. Like we say cancer forces you to shed your skin and transform.


It’s going to look like something it’s not going to look like it did before. The core parts of you are still there. Even for the people who get the diagnosis, go through treatment. Then our end, Edie and their survivors years later, if they’re being honest, most of those people will tell you. There was no going back to that person who was there before. it changes, it changes you, it changes everything. With love, you can channel that into something that’s super positive. I’m living proof of that, because I was broken.


 


So powerful that you bring it back to love. That’s what kind of completes the circle. how it all comes together, is that sense of purpose is that sense of giving and that sense of belonging with other people and the support that you need. It starts with love and ends there.


Then people are look at this, it’s helping so many people. It’s also helping me. I have more support. Now, this isn’t just about altruism? I’m going to go do this great thing. It’s about helping others. In doing so I also helped myself, because if I’m having a scan coming up or something like that, something that’s troubling me, I can go into my group. I know that I’m going to have so many brothers in there that are just going to just pile on me with love and give me that fuel, I need to just get over that hump. I’ve never been more supported. that’s so the support spaces like this go both ways for the people who start them and run them and for the people who are in them.


 


If someone wanted to find out more about men up to cancer, what would they do?


The easiest thing to do is go to ManUpToCancer.com. That’s like central hub, from ManUpToCancer.com, you can access the social media, the Howling Place group, the podcasts, there are all the pieces of it. Just ManUpToCancer.com. That’s kind of your central hub. If you’re on Facebook, and you know what, someday maybe we’ll have a different platform. Facebook was the easiest place to just start a community. most of the communities are there. If you’re on Facebook, if you’re a man, and you’re interested in checking out the Howling Place group, just search for the Howling Place or Man Up To Cancer, the Howling Place. it’s a private group. you need to put in a request to join. We are very protective of our family? We’re very protective of our group.


There are so many scammers out there. It’s crazy? People try to sell stuff and like there’s bots and like everything else. if you want to join, we’re going to ask you to fill out answer a couple questions like tell us a little bit about your cancer. Just make sure you’re a human. Make sure you’re not trying to sell us some magical cure. Then we’ll get you in there. then that’s when that’s when the fun stuff begins.


 


You’re telling me there isn’t a magical cure?


No. The people all the time trying to sell us something like some clinic somewhere or some route. I did a podcast once with my buddy Robbie Burridge. We talked about the magic Himalayan beet root, which doesn’t actually exist, but I just created it was I probably could go out and make like so much money selling that like no, this is how you because there’s people out there are, awful people who profit off of people’s misery and desperation. The tough part about Men After Caner and the Howling Place is we lose our people; we’ve lost about 120 members have passed away since we started the group. If you’re going to be in with us, you have to be at that point where you really can look at your own mortality.


You can, and you can make relationships and face the mortality of your friends and your brothers. Without looking away without that destabilizing you. Again, I was not at that point early on in my cancer. I would not have been a member of the Howling Place until later on. It’s hard, it’s really hard to make these real friendships, support one another, and then lose your friends. The benefit of knowing them and walking with them and the privilege of loving them, even until the end, so far outweighs for most of us the pain of losing them I it’s painful to lose them. It was more joyous and more rewarding to have known them at all. We talked about walking each other home.


That’s part of what we do. If you’re going to be in a cancer community, that is part of the deal. You got to be willing to face that to address that to really address it and clarify your own beliefs. When we’re talking about cancer, and a lot of us are stage four, we are talking about death and dying. We live in a day and age where those are subjects that most people don’t ever want to talk about. We don’t talk about death. We don’t talk about dying, we don’t talk about sickness.


Guess what, humans have been doing it for 1,000s of years. we can do it too, and we can do it better. that’s a whole other show. Facing death and dying and not turning away from it. It is hard. again, the joy of being together and walking with each other on this road and supporting one another is outside of my family, the greatest privilege I’ve ever had.


 


That’s an incredible trip. Thank you for being here. thank you so much for what you do in the world.


Thank you. I didn’t say at the top man. Thank you for all that you do for everything you do for the cancer community. We appreciate you and I’m just I’m honored to be here and talking to you from around the world.


 





 



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