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.

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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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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’s my absolute pleasure to introduce Olivia Clarke and we talk about being young adult with cancer and finding the humour where you least expect it. Olivia’s got this incredible message of making sense of your experience, through cancer, through humor, and stories and connect and she started Humor Beats Cancer, and she’s just this magnificent ray of light out in the world.

Links

Humor Beats Cancer | Chicago | Young Adult Cancer

Humor Beats Cancer | Chicago IL – Facebook

Humor Beats Cancer (@humorbeatscancer) • Instagram

Humor Beats Cancer (@Humorbeatcancer) / Twitter

Video

Full Transcript

Olivia. Well, so good to have you.

Thank you. It’s always been so good working with you on different things and stuff. You talked that at our last event about a year ago. Really, your story was funny, but also very moving to and so people really walked away from it feeling so many emotions and stuff. I heard it was especially with yours too, your just your story that you shared about cancer and about just it just made people laugh, but also made them cry too. You hit all of the emotions. It’s really nice to be able to be on your podcast.

Thank you so much. I really appreciate your kind words. I remember you opening that fundraiser for humor beats cancer. I think it’s been during COVID because we were all online, but it’s just been such a beautiful thing to be there and to see all these amazing people there for this great cause. You put so much care, love into everything that you do like you really you really pour your heart into all of this. It really comes across. It obviously makes a difference for your incredible because, but I want to ask you how does it feel for you? I think it’s a big part of it is how does it also make you feel on the inside?

A little bit about me, I had cancer first, breast cancer stage two in 2015. Then in 2017, created Humor Beats Cancer, which is a nonprofit, that encourages using humor and writing as coping tools to deal with cancer. We have to do funny care packages for people going through cancer, we have a grant program, and we do open mics, where people read their funny stories, either virtually or in person. Then we also tried to think of interesting ways on social media to get people’s attention and to get them to share funny stories and to connect, so they feel less alone.

For me, when I had cancer the first time and so then I was diagnosed again in last fall, in 2021. This time, it’s stage four, and it’s metastasized to different organs and such. It has different meanings depending on where I’m at in my cancer journey. When I was in remission, it really was about how can I take my experience and try to find ways to make people feel less alone and to feel and to get them to laugh when that’s the last thing they could possibly think about doing?

Usually that’s through crude humor and just like having a good time is showing the real point of it is to show two things to show people feeling that they can feel alive while having cancer that they’re not gone and they’re still you’re living and to just to connect people who feel alone.

For me, that’s what it’s done for me is it really has reminded me, I’m going through the beginning stages of stage four. It’s interesting to learn about people who’ve been going through it for years, and it gives me hope. If someone would have told me stage four cancer, I would have been freaking out and thinking. You can live with it. It can be like something that you live with.

Sometimes it’s not, sometimes it hits you; you find out you have stage four, and you have a few months to live. It shows that there’s more than just one way of cancer happening to a person, and there’s and it can affect you in different ways. It makes me understand it a little bit better, and also feel less alone and feel like there’s a chance that I can keep fighting and keep doing what I can to stay alive. I really believe that this group of people ages like 20 to 45, for example, people don’t focus on them and their cancer enough. There’s a lot of support for childhood cancer, as well as a lot of for the for the elderly and older people who are going through cancer, but this middle group seems to get lost sometimes in the middle of everything.

It seems that they don’t really know how to deal with this group of people when they have cancer, because these are people who are still working, and who need to work, they haven’t built up a savings or built up a lot of ways to pay for the their treatment, and they still have to work, they maybe want to have kids or a date, and it’s all happening at the same time that they have cancer. That too has been helpful to me to know that while the medical community may not be looking at this group of people as closely as they can, our nonprofit, at least can bring everybody together to talk about things that upset them things that they wish were different, or to ask questions this is happening to me what should I do? People provide their own just perspective.

I mean we’re not doctors, but like to say when, when my feet started peeling, this is the stuff I did. There are so many things I didn’t realize with cancer. It’s been supportive to me, and also just makes me happy to know that I can help people in some tiny way. It makes me feel like my life, I did something good for people. That’s always been my goal. I just really want to help people in some way, and, and help people feel less alone, because I’ve felt alone times through my life. That’s really what it’s done for me.

That’s beautiful love, it just speaks to my heart. I’m so glad you brought up that this whole young adult going through cancer and experience in the sense of being alone, because oftentimes, when cancer hits you at this time, it’s like you say it’s life interrupted, because you’re going on some a journey. As if something just throws you off, and all of a sudden, you have to completely change things around. You’re not in a place where people around you. Maybe when you’re older, you’re in a place where people around you they understand how to deal with grief, they understand how to deal with difficult times that it’s a different situation. What do you think because, obviously, you’ve seen a lot of folks, young adults in their 20s and 30s and 40s go through cancer, what do you think that we have in common?

What we have in common is we have so many more dreams ahead of us, we have so many more life stages ahead of us. Just as you said, that’s a great way of putting it, it’s like life interrupted. It’s just really, there’s just a lot of like sadness, honestly. There are people who maybe went to college and you’re like, I’m going to be this when I when I’m done College, and then boom, you get hit with cancer. Then you have to put that on hold while all of your friends are advancing during the highlights of life having kids, dating, marriage, promotions at work, things like that. All of that gets put on hold, and we’re living in this limbo of should I date? No, or yes? Should we have children? Yes or no. Even like if they get married whether going through cancer treatment, it’s probably you didn’t want to be bald, if you’re a woman at your wedding.

I think for these other groups particularly the older, those who get cancer older in life, have had a chance to have do all those things and have that chance to see their children grow up or even meet their grandchildren, where there’s. There are so many families who lose one of their loved ones when maybe their kids are two or three or four. They will know a totally different situation and, and the kids will miss out on stuff and the parents will miss out on things. I just think what connects us all together is that limbo, not knowing how our life is going to be.

I know that nobody knows what’s going to happen with them, or if they’re going to get hit by a car or whatever. You are immobile almost, because it’s hard to make decisions. It’s like, at the start, when I found out I had stage four cancer, one of the doctors said, I was like, so how serious is this? They unkindly said that, well, maybe you should start working on that bucket list. I felt like that was such a horrible thing to say to someone, but people don’t think that that’s what they should say or not say and like. I think that that’s what it is, is that we’re just all in this time of indecision where we could just keep trying to stay alive, but also want to be living life our family and friends are.

You described it beautifully because you are stuck in this in between land, you’re constantly in between things. I think the other thing that I just remember coming home, I’ve done like my operation and chemo, and I remember feeling so overwhelmed and things that really made sense before, they certainly don’t make sense now. You have to reinvent yourself at least once. Under this reinvention process you have to find something again, that you can be connected to something that you’re passionate about. That’s why I want to ask you though, because you went through this process and you. You found your way to create humor beats cancer, but how did you how did you lead up to it? What made you think about what to do next?

After I was diagnosed the first time, I started I started thinking about my life and how I didn’t feel like I wasn’t doing enough. I started first just volunteering, and not cancer related volunteering, but just working with people who are poor or need food, or people who are trying hard to raise their kids in a poor community. I started volunteering with them and really trying to help. Then as I was going through cancer treatment, I kept seeing these funny situations happen. That I just thought were dark humor, funny things. I wondered if any other people had been seeing those kinds of things. I took a stab and I decided, well, I’m going to scrape this nonprofit. I’m going to start it off with just a blog.

Then it just started growing. I started picking up ideas. I’m always trying to create projects, and there are so many projects I’ve worked on that just failed or did it, they kept trying. I and I just kept thinking and then I just really believed in this idea. I just kept talking about it so much. Finally, I’m just going to try it. Then I just kept growing. When my mom passed away, and we said instead of giving flowers, if they could give money to his credit grant program in her name to Humor Beats Cancer. We were able to do that.

Then care packages, I realized there are so many care packages that are just so not useful. They’re just a bunch of branded materials that don’t really help in any way. I started thinking about, well, what would I want if I was one of the care packages, and so I’ve tried to make it more special, funnier and more appropriate for our age group than what it’s what I’ve seen other places do. I started doing that I really didn’t want when I when I got cancer, I received this book and I just have lilies on it and it looked like it was like, here’s your roadmap to dying.

I just did not want to have that that vibe so we stay away from a lot of lilies everywhere and pink and were more like red and primary colors and things like that to show that we can talk to you as at your age, and we could talk to you in a way that we use profanity. Most of these nonprofits don’t even do that. Most don’t do those kinds of things. I really think that’s what got me started. then I just, I just feel like it’s been successful, and it’s keeps growing, and I just know that it’s doing good. That’s all I can ask for is for it to be doing good.

I think it’s such a beautiful thing, first of all, that you said that you’ve done a lot of things and, and so many of them failed, because it’s so true, we do things and we all have dreams, and we have ambitions, and sometimes they just they don’t work out and that’s part of life.

That’s also like, a message for people going into cancer is that like, isn’t that how they know the doctors treat it, like we try a medicine or if treatment for a while that that doesn’t work, we go to the next thing. That’s how I’ve operated through life, I have trouble giving up on ideas and things that I really feel passionate about. I keep trying different ways and then I’m getting closer and closer to getting it right the first time. Usually, it takes like five, six times before I can make something how I truly see it in my head and stuff. I think that’s like the message is just don’t give up on anything.

I and I think maybe it doesn’t mean that we’re going to all be cancer, I’m going to beat cancer, but at least it makes life more fun to really be in that you have some sort of control over something. I think that starting a project or making jewelry or knitting scarves or things like that are all things that people could be doing well, they’re sitting in chemo chair, or whatever. That might make them feel good.

They’re contributing something to the world. Whether it’s just to make one or two people smile. That’s great. That’s perfect. That’s the thing to do. I know it can be hard when everybody’s so tired, because I’m tired all the time. You hope that the positivity will give you energy and it’ll help carry you through.

Exactly, Olivia, it’s so powerful, what you say because it really connects you with what it is that that helps you to get through a difficult time and connects you with something that that just lights you up in some way and gives you that energy, in a time when you probably needed the most. I find it very inspiring how you talk about that you started. You started from just like taking the first step and then it leads you towards something else. Then it leads you to something else. It probably leads you to a place where you didn’t really plan out to be you didn’t have this project plan mapped out, you just started with something and it just kept growing like you say, so it’s not it doesn’t have to be this overwhelming thing.

Yes, which is something I’ve learned over the years because I used to get, I think of a project and I would never start because I was always overwhelmed thinking of like the next the next step or the end goal and how am I ever going to get there? I’m trying to be better about that. I think Humor Beats Cancer is a good example of me taking it step by step because sometimes we’re not as big as the other organizations or we’re not doing this or that and stuff. It’s really hard not to compare yourself but that does really no good to like to compare yourself because everybody’s on like a separate journey on their projects. I’m trying to be trying to try to be more kind to myself and not being like man, get your ass in gear, it’s definitely been an interesting journey with Humor Beats Cancer.

Exactly. I’m so glad that you brought this up believe it because it’s so special and I think that’s what we do in our age as well, it’s like we end up comparing ourselves to other people where they’re at, where they’re where they’re going and you got to be beating find ways to be more kind to yourself and not beat yourself up or saying well this person has got this, and I may I might be in a place where I’m struggling. I don’t have what they have and what helps you to feel to be more kind to you?

It’s hard, it really is hard because I’m really tough on myself. I just am a type A personality through and through from a baby on up. I’ve always been. I really have I have a really solid group of wonderful friends and loved ones who I just really lean on. Sometimes they have to remind me that to be like Olivia, it’s fine, you’re doing a lot, you’re doing enough. I also go to therapy, and that’s also reinforced there too, because for so long I would ruin fun things that I have accomplished. I’m thinking, well, it was it was okay. It could be better; it could always be better and stuff.

I think it’s having people around me remind me of the good that I’m trying to do and remind me that I’m I am making a difference. I don’t have to be Oprah. I can be I can try to take some of Oprah’s lessons and use them to my benefit and stuff. It’s about and it’s also just about remembering the good times and remembering I had a really great experience at this event.

I feel like others did, too. That this was a good day. It’s really hard. My advice for anybody going through something similar is just to have a strong group of people around you, who are there to remind you, and during those times when you get down on yourself, and then also just to really keep little notes on your mirror that say you’re awesome, or you can do this or that. I think that’s been really helpful.

I have like three or four on my on my mirror right now. I know other friends should do that, too. When you look in the mirror in the morning, you can see those and be like, yes, this is how I’m going to start my day. I don’t want to pretend to be good at this, because this is really hard for me. I really try. I really try. I think that’s some of the ways I try.

No, that’s what makes you perfect, Olivia. I love this advice, putting stuff on the mirror. It’s real, because that’s how you look, and you look at yourself. To me, it’s been almost a revelation at one point of my life, to look at myself in the mirror and tell myself good things about me. It’s hard, isn’t it? Like sometimes you’ve got to say good things to yourself.

It is it’s so hard. It’s so much easier for me to compliment someone or to try to lift someone up that I that I don’t think about doing that for myself. Like there’s some sort of saying, I can’t remember who said it, but something like, the way you talk to yourself, would you let people talk to your friends that way? Like if you’re, if you’re down on yourself, and you’re beating yourself up, but if you saw your friend doing that you would stop them and say, no, you’re amazing, you’re great, you’re doing a wonderful job. We have to treat ourselves just like we treat our friends and our loved ones, we have to celebrate ourselves too.

Not in like a cocky way, but just in a way that makes you happy to still be alive. I think that’s super important for people going through cancer, because it’s really easy to go come down on yourself and live. there are many days when I have a bad day. I’m just like, I just don’t know if I can get up and work and then do all these things and stuff. Then it just like telling yourself either today’s not the day to do them, or maybe do one thing. Maybe that’ll help you show that you accomplished something for the day and stuff. Those are some things I tried to do. I don’t want to have cancer; it’s slowing me down. I don’t want to be slowed down. I want to keep moving. I want to keep doing things. I hate that cancer makes that more difficult to do.

Exactly. I love this one thing that day. I’ve also arrived at this live as well is focusing on getting one thing done every day. Sometimes it’s something that I’m really proud of. Sometimes it’s like taking a shower or whatever. It doesn’t have to be some epic thing. Then you feel like, I’ve done it. I also want to circle back to what you said like when to talk about it with your friends and family. That’s not an easy thing to do either sometimes, but sometimes you have people around you but but like talking about things like difficult moments is hard. Sometimes you don’t know how to put things sometimes you don’t want other people to feel awkward or weird about it. It’s so vital to find ways to talk about going through a difficult time with people around you. That’s what they’re there for.

For me, sometimes it’s hard, when this all went down in the fall and then also got worse at the beginning of the year. All my friends were like, what can we do? What can we do? It was so hard for me to think of like, because I like to be self-sufficient. It really was about like it really was about I’m trying to find little things that I can ask people to help me with, could you get my groceries? Or could you carry my packages up that are at the front desk.

Little things like that, people really felt good. They felt like they were helping. I realized that it’s important not just for me, but for them too, because they don’t want too just be helpless. I think that that has been an important lesson I’ve learned the second time around, that maybe I didn’t understand before. That’s been a real challenge. It’s definitely something that’s been helpful is just to include friends and family into my journey in different ways. I can’t say I do well every time but I’m trying for sure.

It’s super empowering. As you say, the people who truly care about you, the people who really care about you, they will be so grateful, right when you ask them to do something, because as you say, it gives them an opportunity to step up to be there for you in a meaningful way. it also prevents help that that you don’t want.

Exactly. If you don’t share what you need, you’re going to get random stuff that you don’t need. It’s definitely about really little things. Like, it’s so funny, because I was like to let it’s difficult to think of things, but then even just like a ride somewhere, or to a doctor appointment, or something like that, it can switch it up a little bit and can bring someone else into this journey with us and stuff. I’ve also learned that I’ve also learned that my friends, there are different things that they’re good at like, there’s different things like, certain friends are good for crying, together on the phone, certain people are really good about, let’s pick up and go away for a weekend, or there are certain friends who are really good cooks, who want to make a meal for you.

There are just all kinds of different support. Together, all that support can be so helpful. I love my friends, but they’ve gone to just like a whole new level of being there for me and checking in on me. It’s just wonderful. for people who don’t have any sort of friends, or maybe they’re completely alone, I think that reaching out to some of the organizations they like, reaching out to us, I mean we’d love to send them a care package, check in on them occasionally any of that stuff. I think that there are people out there who want to help and want to be there for us, but it’s hard to see when there’s so much shit in our life. It’s just so hard to see it.

I’m so glad that you bring this up to go out and get connected with like Humor Beats Cancer, other organizations that you believe in, that makes you feel not alone. That’s one of the critical things about what can support us and help us and hearing other people’s stories. I think just the fact alone that other people are going through similar things, I really look at everything that you see from Humor Beats Cancer on your blog, or whether it’s the socials and these little beats, where people say some inappropriate things. People share that because it’s hilarious or it’s inappropriate. It’s what helps us to understand, it’s not just me who’s had this story, but it’s other people. I’ve seen that as well. That in itself is such a huge thing, isn’t it?

It is, it’s so funny, because you do think at least I thought, well, I’m the only one to experience this thing. Then all of a sudden, you’re like 12/15/20 people are like, my God, that same thing happened to me too, and stuff. It’s definitely like, we may start out with the humorous thing, but then like it has been turned serious where people are getting tips from each other over social media, and they’ve never met each other. There are so many people who, who celebrate people’s accomplishments, and when dealing with cancer, who they’ve never met in person, and they don’t know and so it’s just I think that’s the coolest thing.

I when people bash social media, I always say, well there are positives in it, too. I think that this is a positive that people all over like you and I would never have connected. We were in completely different places. We’ve done that because of Humor Beats Cancer, and I think there’s so many other stories like that, where people may only know each other virtually, but they helped save someone from either living out the rest of their life in despair or just to get through this moment in their life.

It just depends on the person and the type of cancer and what’s going on with them. I just think it’s amazing. I don’t know, what we would have done without social media during COVID. I don’t know what we would have done without social media during cancer and doing all these things. I just think it really brings people closer together when used right.

It’s so true. Thank you for that reminder, I remember when the whole COVID thing started, because you go through cancer, you’re used to this isolation thing. I was like I used to jump across the street when I was going through chemo, when they saw the person walking toward me, so I was isolated before it was Covid. We’re very used to this world anyway. Sometimes, that’s one of the few things that you can do is, is to contact someone online or on video, or somehow on socials where you can interact with them. You are probably sometimes you don’t feel safe interacting with people in real life.

I love when I see like conversations about, and it’s not like from medical opinions, it’s more like I’m dealing with, say, the side effects from this drug, what would you recommend, and then just see all these creative things people have done after trying things and this not working, and I’ll try this. Then you find like something so strange works. Then you try it and you’re like, my God, this helps me so much and stuff. I really think that that is just beautiful, you know?

A huge part of it is also is also learning to tell your story, because I think part of it is what can be really helpful is finding a way to share your story, whether that’s on social media, whether that’s doing some sort of a project I don’t know, writing a book, I know you’ve got your beautiful posts on your blog with people sharing their experiences. This is such a big deal for you like storytelling. What are some of the thoughts that you have, how do you tell your story? In a way, you’re going through cancer, you’ve been through it. Or you have a loved one who’s dealing with it? How do you how do you put it into words?

For me, it is using humor a lot of times, because I want people when I’m telling them to not be so turned off by me and the subject, that we never talk about it again. they start avoiding me. I always find that, I mean people, some people are like, my God, that’s a lot for Monday coffee conversation. I’m honest about it. I’m also like to put some humor in there too. that to take the tension out of the room. It is serious what we’re all going through, there’s no reason to make light of it, or to really make it seem like it’s not a big deal, because it is a big deal. I do try to if I’m writing it down, or if I’m telling someone, I tell the seriousness of it, but then I also share some of the funnier stuff, too.

Like, there’s just weird things that happen to your body and to you. Depending on how close you are with the person, that’s the stuff I’ll share. That’s where I wanted mine to be different from other organizations, is that I didn’t want it to be just about the sad stories, I wanted it to be about what life is like for people truthfully, and like the funny things as well as like the, the things your kid says about you about you, it’s full, because you have cancer and stuff like that. That’s what makes us a little different is that I think that some organizations really like to focus in on let’s tell me your sad story.

I don’t know if that’s as helpful as it seems, to cancer patients, because then you go deeper and deeper into that hole of depression, and you feel like that’s all you are, is cancer. Whereas, if you’re sharing it, and you’re sharing humorous stories, people can relate more, that helps spread the word a bit more about cancer and to talk about that everybody doesn’t die from cancer, and some people do go into remission, and some people do last a long time. I want people to get educated on cancer, who maybe don’t know, and they can do that through me. I think that’s a great idea.

Yes, absolutely. It was a beautiful reminder that I realized why I’ve been turning some people off, that certain part of my cancer journey. Probably having too deep and meaningful conversations about it. Maybe talking about other things can be better, because it can be more healing. Sometimes like you say, I think it’s really important when we’re talking about the humorous side of cancer, not because it’s great, but because it’s finding this awkward way. It also gives us permission, I think, to also talk with people more openly about things that are not related to cancer.

I think so. I do, I think it opens up. I feel like when we get cancer, this bubble comes up, and a lot of time comes around us. It separates us from rest of the world. I like to try to pop the bubble and say what, I’m still watching Bravo reality shows, I’m still eating way too much ice cream, I’m still doing all these other things, I’m still me, cancer is just one piece of me. It’s an important piece, because it can often be a life-or-death piece. It’s not all of me I still, I still enjoy going to concerts, I still enjoy junk food, I still enjoy work.

I do think that sometimes we don’t often help our cause in a way because it’s like, we talk about it in such a negative way that people don’t think there’s any hope to you know living. I really think it’s about talking more about cancer in ways that are relatable to people, not just to make them feel comfortable, but for us to be brought back into society sometimes. To your point, though, about COVID, I think that that actually was strangely, just the conversations about COVID helped our cause, because people finally got what it was like to have to be stuck in at home and isolated from people like you described.

They notice like they have to go the doctors a bunch of times, and you have to go because some people got COVID had to keep going to the doctor. I feel like that it really like showed a lot of people who have not had any exposure to illness, what it’s like for us, and I think that that is that is a that’s a positive side effect of COVID when there’s so many so many negative parts. I think that that’s how I look at cancer, there’s has to be some positives, something that’s going to help the next group of people going through cancer, is that something that we all can do, and I think that is talking about it more in a relatable way with others.

Exactly. there’s so much about it, when we when you talk about something that happens, you’re also in the process of redefining yourself redefining how you see the world. It changes your body, it changes the way that you feel it changes the way that you look at life, and the process of sharing your story, doing something that you might feel passionate about that somehow excites you, trying to make a difference in your own way, in whatever way that is. That helps us to redefine ourselves and get, I don’t want to say comfortable, but get okay with living in whatever your reality is. Ultimately, you can feel good about yourself.

I agree with you. There’s just so much to cancer, beyond the diagnosis and the treatment that I don’t think we talk about enough. I feel like whether we live or die, those of us who will get cancer will forever be changed. There are going to be things that about us that that’s different. There are going to be things that we appreciate differently and things in life that we think about more and stuff like that, and I think that that it can be a gift.

I think for me I didn’t really get that I wasn’t giving back enough to the world in some way. I got cancer and then I was dealing with it, and I was like, my gosh like I was sick of myself. When you’re in cancer, it’s all about you all the time. Like it’s like and then you you’re done with the treatment, and then you’re like a poorly lit alone, and you’re like, now there’s nobody here at all. Nobody cares. I think that it really, it showed me that by doing these little things that I could still do have a meaningful place in this world. I think regardless of if I have cancer or not, so I think those that was important.

That’s beautiful. That’s so inspiring, because as you say, it finds you a place to give, to feel get a sense of belonging beyond yourself. I think that’s so vital, on our journeys to cancer to find that sense of something of belonging to something that is that you care about, and the way to make sense of life beyond cancer.

It’s really hard. All I think about is cancer. By doing Human Beats Cancer, it helps take take the focus off on me, and helps me focus on other people in a different way. Still related to what I’m going through, but like, I feel like people who get in volved with us and who share their thoughts and stories are really I see that in them too. I feel like they’re very joyful people, generally speaking, they don’t want to just sit and like stew in their cancer story.

They want to really make the most of their life no matter how long it is, I feel like that’s another thing Cancer gives us, it reminds us that everybody’s going to pass away at some time. You don’t think about it if you’re healthy, you just assume you’re going to live forever. I think it’s we’re given the gift of like, a reminder that life is precious, and life is short. That we only have so many times to do good in the world or to or to love our loved ones. Now’s the time, and you don’t wait to say the things that you’ve been wanting to say to someone you care about do it now because you just don’t know, you don’t know what’s going to happen to anybody. That’s what I keep trying to remind myself too.

That’s a beautiful thing. Olivia, I want to thank you so much for being here so much for sharing this, and for what you do in the world, because I think it’s so vital.

Thank you so much. Thanks for having me. I really appreciate it. It was it was a great conversation. thank you.

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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 be talking to Rod Ritchie who is a health activist and a beautiful soul who brings a unique voice in the world of cancer as health activist speaking for male breast cancer.

Links

Male Breast Cancer (malebc.org)

Male Breast Cancer – awareness and beyond

Video

Full Transcript

Rod, I stumbled upon your manifesto on your website and the work that you’re doing. What really struck me is your dying for change, we’re dying for change and the urgency that you have in this manifesto, tell me, how did it come about?

When I was diagnosed in 2014, obviously, that’s a shock. You are pretty much concentrating on getting treatment, as you know very well for cancer. Then I suddenly started realizing when I am looking around websites, that it’s a sort of pretty pink disease, and how does it cater for men.  Obviously, I got to the conclusion that it wasn’t catering very well for men. I have to say, in the last eight years, there’s been a lot of changes. That manifesto, which, by the way, was written by me and the late Rob Fincher, who was stage four breast cancer patients from Wollongong.

That manifesto has made a difference. When I look at the list of quite a few points, probably half of them we’ve made progress on and things like the de-gendering websites, adding a bit of blue for the pink and sort of making it more inclusive, making the text more inclusive. If a guy gets over there on the site starting to hear stuff that doesn’t really apply to blokes, I don’t think that’s good. The stigma attached to this disease, for a man, I mean, you, you could probably talk about stigma as well with your particular cancer, testicular cancer, but for a man to have breast cancer, it seems gee, what’s wrong? Are you a bit effeminate or what’s the problem?

Absolutely. I couldn’t agree with you more that the stigma, these cancers, they go to the root of who we are as men. I think that’s the root of all cancers, they affect us at the at such a deep level that affects our body, it affects how we think about ourselves, it affects how we are around people. I’m just inspired by the bold vision that that you guys had around this manifesto, and to see that progress is being made around it. Let’s get back to your steroid because I really want to talk about that and your story with breast cancer. I mean, because we all kind of have this moment when we when you kind of find out that you have cancer. What was it like for you?

Pretty surreal but not unexpected. I had a lump behind my left nipple for a little while. I presented to the general practitioner, and we both agreed, maybe it was nothing. A month later was still not nothing. I came back and anyway, long story short, the third time I turned up, I said, I need a scan or some sort of and she said, but none of those times that you do a clinical examination and I just sort of wondered if I presented with breast problems as a woman, I think I probably would have been seen a bit earlier.

That made the diagnosis at a little bit of a later stage than I would have liked. I had excellent treatment, just locally up here, and I couldn’t really complain about anything. I have to say, as a guy, there’s a lot of women out there as breast surgeons, oncologists, radiation oncologist, and we’re lucky in a way, as guy having this disease, we’re lucky that we can just slip into a system that’s really geared up maybe for women, but a lot of the treatments really are just as effective on guys.

That’s fantastic. Rod, I love how you talk about that you were even at those were very early stages you were the advocate for let’s get it checked out, let’s get it looked at. Sometimes, you’re going to have to put your hand up and kind of look after yourself, be your own champion, if you will. It’s such a tough time, because as you said, there is stigma. It’s like you described there is this radiation causes the different specialists. It’s kind of kind of like almost you have to learn this new language, isn’t it? It’s challenging time on so many different levels, and it just throws everything up in the air. Would you go in on your kind of journey through cancer? Was the time when you kind of felt like you almost wanted to give up because it was just getting too hard?

No, honestly, Joe, I didn’t ever feel like I wanted to give up. I felt like I really wanted to take the treatment on offer. It is quite invasive, and it’s quite lengthy. In my case, it was starting with surgery, because the chest, I started with chemo because the breast surgeon didn’t want to operate. The skin was inflamed, etc. That chemo over a few months is quite tiring. I read somewhere that you’re meant to keep active and keep doing things. That’s what I did, I took on a building project. Whereas the first day, I flopped into the lounge chair. After that, I thought, bugger this, I’m just going to keep going and I did, and I and I got through the chemo quite well.

The surgery, of course, is a different matter, your cut, and there was quite extensive, including lymph nodes under the arm whole lymph nodes removed, and there’s a drain that you were. I thought that was perhaps the hardest part of the treatment. After that was radiation, which is 33 treatments every day, except the weekend. Bingo, you’re sort of done. Tip you out the door. That’s when it gets a bit like oh dear, I quite liked treatment because I felt quite secure of it. I think you got to get over that.

When you find yourself in this new reality of cancer, you can think that you go through this treatment and everything and sometimes we feel even perhaps even more lost when it’s done. All of a sudden you don’t know; you’re waiting for results. You don’t know how things might turn out. You don’t have that support. Tell me what kept you going in that time? What supported you?

I had good support from my partner. She was around when things needed to be done and changed. Obviously, that was a big thing. I’ve got three brothers with their own families, they were supportive. Two kids, my daughter and a son in their 40s, they were very supportive. I never felt unsupported. Of course, with social media and the internet, particularly, there’s some very good sites, and not just social media actually, Breastcancer.org, which is a big site.

Again, it’s full of mostly women, but I’ve stuck around there for all the time and talked to other men. As soon as I realized that I was going to be I was pretty keen to get a bit trained up one, as a telephone counselor, two, helping in the infusion room at the local hospital. At the time, I was getting over treatment, if you like, I was also learning about learning some new skills. I had skills as an internet person, as a writer and a marketer. I thought, I’ll just switch over and I was sort of ready for a challenge. I sold my business, and I was thinking patient advocacy and I sort of thought that evolved into patient activism. I like that term as well. I mean, it’s a next step. I’ve never stopped all that time. I’m still going.

I’m so inspired to hear that story that you volunteered; you’re out there helping people. You decided, I’m just going to go into this this world of advocacy and activism. Rod, what is what is the distinction between patient advocacy and patient activism?

Patient advocacy, I think is working to promote aspects of the disease, in my case with the men who have it, and helping them go through the same things that I went through. You get a bit of knowledge. They say, a bit of a bit of knowledge is not bad, too much knowledge might not be good, but you really do learn a lot. A lot of the time, it’s listening, listening, what’s the problem? It’s not trying to put anything on anybody and nobody that contacted me, my number was out there to be contacted. It’s always the person that you’re working with contacts you, you’re not chasing anybody. You’re ready to terminate the conversation whenever you feel it’s getting too tough for them.

Advocates, they sort of prolong and do or do the hard work. Activists, I think have sort of gone a stage further and like the manifesto that’s an activist thing. Also, you’re not afraid to take the debate up to the medical establishment, pharmacological people. You reach the stage, I think the advocacy might last for a couple of years, and before the activism takes over. I have to say that you don’t feel comfortable until you really know your disease, you really know what you’re dealing with, and you really know what’s wrong with the way that it’s being handled.

Exactly. It’s going to sounds like it’s almost challenging the status quo, right? Like, there’s this established view of the world and you kind of painting a vision of what’s possible, right?

That’s it.

That’s fantastic. Good on you for doing that, because that’s really, in my mind, is that the way of progress. You have to be able to challenge the existing view. That comes from put putting out bold visions of how things might be, and it comes from real people going through this experience. Like yourself going, we could do better, right?

We could. I also think it’s not a matter of going into battle with the medical profession, they’re very busy people, no more so than the last couple of years. You do really understand their point of view, you’re sitting in an appointment, and they’re listening to you, but there’s sort of also thinking perhaps about the next patient or about an operation they have to do. I think, by going to an appointment well researched and well versed in all the questions that you might want to ask, you really do have to ask questions, because these people you don’t see very often.

I found that the really good doctors just loved it, that someone was coming in and not keeping an eye on them, but actually making sure that the treatment they were giving you was effective or there was a reason for it. I have a great relationship with all my medical people, and I think that was because I was a bit curious and a bit out there. I wasn’t all that fragile, pretty quickly became resilient. I think it’s resilience that gets you through all this. If you’ve got that nature, or if you’re lucky enough to be able to handle it all then yes, that’s what you should do.

Absolutely. To me, those two things are connected, Rod, like being able to speak up and being more resilient. Sometimes we want to be able to bring out our concerns, to bring out our worries to bring out questions. When you’re working with it a medical specialist or medical team, they don’t really know you, they don’t really know what’s important for you and your way of life. You kind of got to speak up for yourself. I feel that when you do that, when you ask questions, when you talk to people who’ve been going through the same experience, when you kind of have an understanding of what is it that you want, or at least what’s important for you. All of a sudden, you become more resilient, because all of a sudden, this experience starts to feel like you’re a little bit more in control, right? Like, all of this stuff you felt you feel, sometimes it’s kind of goes over your head a little bit. When you start to ask questions, you start to feel more in charge. Do you think so?

I do think so. You hit the nail on the head there, Joe, because, as I said, I think medical people get it, where you’re coming from. They need to have respect for patients, and we need to have respect for the professions, but it’s a two-way street. I think it’s amazing. There are so many good people out there. I just, I just feel very, very comfortable talking with them, going through treatments and, and learning that it’s not all that serious. You can maybe have a laugh here and there. It’s also, I think, building up your resilience. It’s sort of like a cumulative thing. I felt like I could probably stop a bullet right now.

Yes, bulletproof Rod. Absolutely. You’ve seen many medical specialists that you’ve interacted with, both as a patient, but also as an advocate, and as an activist, but you also have been interacting quite a lot in with the people who’ve been through cancer with caregivers. You’ve seen men who are going through breast cancer, people going through different cancers, different situations, different walks of life, different stages, different phases. When you look at the journey of when that we go through cancer, both from diagnosis to potentially survivorship, hopefully, what is it that you feel that we share on that journey? What stands out for you?

We share a lot. I was lucky enough to be given an editor job for one of the male breast cancer charities. They’d send me the men stories that they posted on their website, and I probably edited over 200 of these stories. Every one of them is different. For everyone that cruises through it, there’s people that are struggling. Most discomforting of all, for every early-stage patient, there’s a couple of late-stage patients and getting diagnosed with cancer at stage four right from the beginning, it’s a terrible blow to anybody, any gender, if you like. It’s from those people that I think I learned the most. They’re quite amazing. Rob, who did the manifesto with me was one of those people and he had a great spirit and never stopped helping people. I think right at the end, we just sort of said to each other, and I saw him in hospital a couple of days before he died, the hashtag is fuck cancer.

Yes, exactly. Now your kind of carrying the torch as well in some ways. It sounds like you and your friend, you were we’re doing this together.

Yes. We carried the torch. Life goes on. In many ways, we all we all have to face a lot of different problems too.

Absolutely. You’ve gone through such a, such an incredible journey with your advocacy and your activist work and the support that you’re doing for folks with male breast cancer, the global alliance. I know that you’re doing the male breast cancer live newsletter that you’re involved in. You’ve got your own fantastic website which we’ll talk about as well. You work with different groups as well both out here in Australia, but also, across the world and in United States as well. What is it that kind of spurs you on? What it is that helps you to keep going to have the belief and inspiration to go along?

It’s because I’m working with good people, I think you have to keep up. People in this space and I’m sure a lot of them are generally very well intentioned. There’s no BS, spade is called a spade not an implement with which to dig a hole. That’s an openness which I quite like, I really do like, and I don’t need anything else I don’t really need anything as far as inspiration goes, I just get up and see what’s on the computer every morning, no doubt, like you do.

Exactly. It’s such a beautiful thing, Rod, isn’t it? I’m so glad you brought this up. I think when sometimes you find yourself feeling in this new world, I have to go into cancer, everything’s changed. Finding something where you can be passionate about, something that you can throw yourself into is such a rewarding thing. I’m so glad that you brought up the fact that it’s, you just meet great people who get it, and you can spend time interacting with them. Right?

It’s called cancer land and we are living in different rooms, but it’s surprising, on Twitter, which I do quite a lot of a lot on. It’s not just breast cancer. There’s every cancer there you can name, and there’s a similarity there. They all have their different worries. As I said, for the people going through treatment for an advanced stage, it’s completely different. The odds are so high. I sometimes look and I think we’re very fortunate in the medical era that we’re in, fantastic treatments, we’re really fortunate.

At the same time, especially in the chemo drugs are heavy going and the side effects are huge. I sometimes hear from people saying, no, I can’t take this anymore. I want quality of life over quantity of life. You often think, I wonder how I’d feel about this, I’m still waiting to find that out because I’m still in the quantity section. I think I think it’s very difficult for so many people and not so much for me, that’s why I’m still bouncing around helping.

That’s absolutely right. I’m glad that you brought up the fact that it is for many of us, it’s a struggle to not only deal with treatment, but to deal with side effects and aftereffects. I guess sometimes we don’t really think about that’s, that’s part of life. Also that’s why it is important to get involved in something that you’re passionate about, to kind of throw yourself into whether that’s advocacy, or whether that’s activism, or whether it’s something that’s totally different that kind of lights you up, that makes you excited about life and what you live in, in whatever way that is for you. I want to ask you, if you’re someone who’s been through cancer, or maybe perhaps living with cancer, and you feel like you want to do something, you want to make a difference and, in some way, maybe you’re not sure where to begin or like what to do. How do you think around that?

I think I think it’s most important to really get across your topic. It’s not, it’s not a matter of going out there half-baked and never giving medical advice, because I’m not a doctor. I only really just prefer to listen to people and to try and help them along, get through what they’re having to cope with. I think there’s just that feeling that if you’re making someone feel better, I always think it’s the sort of the little secret for these people that are patient advocates is that it makes you feel better and nothing wrong with that.

Absolutely. That’s the that’s one of the best things.  If I talk about something like that, like doing my podcast or my books or coaching, whatever, I feel like sometimes, you know that I feel almost guilty that I get so much out of it. It shouldn’t be like this. If you’re doing something that that helps others, but if it also helps you, I mean, that’s kind of the best of both worlds.

That’s groovy. That’s what’s called a win/win.

Yes, exactly. That’s what we’re looking for in this in this brave new world. I also think it’s so important or odd, and to find your like a reason why, to find the reason why something doing something is important for you. We all have our own reasons. We’re all different individuals. Our reasons might be different and distinct. I think really connecting with what is important to you in your life right now. Who do you want to help? And why? Whether that’s whether that’s advocating around the type of cancer that perhaps you will live to live through, or maybe it’s doing something in your community, or maybe it’s renovating your kitchen, whatever that is, right? It’s so vital to find something that a reason why you believe it’s something that you want to get behind, right?

I’ve got a personal reason, is that my mother died young from breast cancer. I thought, as I’m going through post treatment era, and I look back, and I think I see particularly a lot of younger women who I’m really keen to try and support as well. I think back then, in my mom’s day, that was 1962, there was no chemo. Patients that went to stage four, just all died pretty quickly. I think, as I said, before, we have medical science, I think that’s reassuring.

It’s not a hopeless task that it used to be. I feel motivated for that reason. I think there’s no other reason, I guess, apart from the fact that it sorts of snowballs. You help somebody and then they hear about you and say you help them. For instance, there’s a guy in the United States who loves to have a Skype every few weeks. He’s been through and he’s currently stage four, but he’s doing very well. It’s just become a personal friendship. I think you make a lot of personal friendships. It’s quite a strange situation.

In fact, I’ve written an article on social media, friends, and what you do when, when a person dies that you’ve never met. I think that’s interesting sort of concept as well. Every so often, somebody just passes. I’ve had a few of those recently. I think that’s, that’s something that you can’t grow on. It’s something that also keeps you going. I think it’s a real incentive to, to think that maybe there’s some people that haven’t got a lot of time and whatever you can do, it’s going to be good.

Exactly. It also helps us to reconnect with our own experience. I feel that in some ways, I don’t want to close the door on the things that I’ve experienced, because now it’s such and it’s such a huge part of who I am today. For better or worse. It’s made me a different person. I’m quite happy being who I am today as, and I can’t imagine myself being different from the person that was a few years ago.

How do you think it’s changed you, Joe?

The biggest change, Rod, for me is that it’s made me feel so much more in the present. I feel I’m not spending a lot of time thinking about the future or worrying about the future. I don’t spend too much time dwelling on the past. I’m so passionate about living today, enjoying the moment whether that’s with my family, whether it’s in my work, and I think reconnecting with that that being present in the moment is such a vital thing. I don’t think it’s some woo-woo new-age thing, I think is a very real and it’s really helps me to get going. What about you, Rod? What is something that for you feels changed probably the most for you.

You certainly gain a lot of knowledge in a field you’d probably never would have gotten into. I think if you’ve got certain skills, you can transfer them to this field. Quite often there’s a medical profession out there that really wants to engage with patients. I find them on Twitter, which I have like 2500 followers, and I have one rainy day look throughout this workout who are these people can’t make that that half of them are actually medical professionals. That means that you can put the patient’s perspective to a lot of people that you would never ever in your wildest dreams would have reached. That’s what makes it rewarding. I think it’s not just the fact that you can go and pack something where you can write something, you can edit something, you can do a podcast, it’s that you actually can engage. That’s what keeps you going because you feel you’re getting somewhere.

Tell me about your experience on social media, on Twitter, of making an impact online, how was that working out for you?

It’s working out very well. I’ve followed a couple of Facebook groups, as I’ve got prostate cancer as well as breast cancer. There are men in the prostate group, and there’s not many men in the breast cancer groups, but I keep the breast cancer groups up to speed with what’s how a man might feel. With the prostate cancer one is just guys chatting. Interestingly, on the prostate cancer, Facebook pages, half of the people that are on it, in here are actually women, wives, partners, girlfriends, whatever.

Whereas the breast cancer one, you have to you might go a week before you see a man wonder on there and men, you probably agree with me that men aren’t really great at presenting with a disease, they’ll put it off. I’m sure so many men that hadn’t turned up for their seminar examinations or have been embarrassed in your case to say I’ve got a problem with my testicle. It’s a bit the same with men and breasts. They don’t think they’ve even got breasts. a lot of the time, they’re just as I said before turning up late for a diagnosis.

It’s so true. I have to say that I’ve mirrored that experience, yes, across on everything that I’m doing. If we’re talking about testicular cancer, and prostate cancer is there are so many caregivers that kind of show up and listening that I didn’t expect that. It’s interesting that you’re seeing on the breast cancer side, and I also couldn’t agree with you more around men and how we deal with cancer. The first time I was invited to speak at like a prostate cancer support group. I think I was there for about just over an hour. I was going to speak in towards the end. It was fascinating, the guys talked about everything, they talked about the Christmas, footy. They talk about this, talked about that. I’m sitting there going, did I go to the right place. Is anybody going to mention cancer. It was one of those surreal things where it’s one of those things that is difficult to bring up, even though this was a safe space, even though that was a prostate cancer support group, like you’re not a supermarket. It’s fascinating how we work right?

Maybe that sort of talk works for them.  I’d love to hear say how those meetings go, do they eventually talk about testicular cancer are about what’s worrying them or about treatments? I guess they do, but I guess they’re trying to try to make small talk.

I’m always the unknown person. I say stuff and bring it up. I don’t know, maybe it’s just the infuriating nature of my personality. I feel it’s really important to bring it up because I know that sometimes it’s difficult to talk about and sometimes is it is painful to bring up these things. I remember like in that particular moment, when I brought it up like people started sharing some really difficult moments that they’ve had the difficult times that they’ve experienced but I really believe and wrote that. My personal belief is when we go through difficult times. we things that affect us, I believe that bringing those fears and those worries out into the open, I believe that’s when they lose the grip on you.

How far are they prepared to go? This is the question because I think about this a lot. How much information are you getting about men’s problems? Let’s talk about men. How do you think you can help them when you maybe got limited information? Or do you look for signs that they’re struggling in any particular department, and I say, sexual function or something like that? I wonder how you handle that?

I personally, don’t try to help because I certainly don’t give any medical advice. I do think it’s important to share the stories with other people and bring out your stories. I think, first of all, it helps us to reconnect with our own experience. I think when it’s very difficult. My belief, I think it’s true for not just men, but for all of us as people, I think it’s very difficult to go out and seek support, whether that’s support of medical specialists, whether that’s support of a clinical psychologist, whether that’s even talking to your partner or friend, when they haven’t been able to make sense of the situation yourself. If you haven’t been able to get clear on what’s bothering you, and how you know how it’s affecting your life, we have to be able to make sense of ourselves first so that then we can go and seek that support. I really look at that as a vital step to reconnecting with your own experience. It then opens you up to get help.

That’s really well put.

Thanks, Rod, I really appreciate that. You strike me as a person that’s just living life to the fullest, despite your intense experience with cancer on two different fronts, and all the amazing work that you’re doing, what is it that you feel grateful for in your life today?

I always feel grateful that your kids and their kids are okay. Your relatives and friends are okay. It’s a bit of a tightrope, exercise isn’t attended, and you know that some days, it’s not going to be okay. I think you just keep plodding along. I think, personally, my kids think my life’s boring. We live in the country here, and we just grow vegetables and wanting to do more and all that, and I don’t try and over explain what I’m doing to them. I know it’s okay, they just have to trust me that what I’m doing is okay. They’re probably glad that they don’t have to come up here and change my nappy or something.

Absolutely. Tell them like we’ve someone wanted to find out more about male breast cancer, the work that you’re doing on Twitter, on your website, what would they do if they wanted to find out more about your world?

I think they they’d obviously go straight to the internet to research, to see what Dr. Google says. I think people say to me, I don’t tell people to go on the internet. the internet’s changed a lot. Any search term you put in for medical condition these days has gotten really good results from top institutions, from groups that are very much have a good reputation. I think there’s a lot they can get from the internet. I would send them to my website malebc.org, which is pretty simple URL malebc.org. There’s a lot of information there.

There’s and it’s information from medical specialists. It’s not just chit chat. There are so many aspects, I think with all with all cancers, there’s different things that worry different people and I tried to sort of cover that there. They need to find I think they need to talk to other people with their disease and social media is perfect for that. There are Facebook groups, which we talked about on Twitter, which is actually helping people and a lot of medical information is posted there the latest studies, you might have missed something.

I get a lot of feeds in on my email, but I like to keep up with what’s happening there. People use Instagram, which is more visual. I’m not a great fan on that. I think find your niche learn little about your disease. Just put your toe in the water. Normally the people are wanting to find out more and want to make more people end up doing that. They are sort of self-selective.

Fantastic. Thank you so much for being here. Thank you for what you do the world.

Thank you, Joe. I’m really proud to have been interviewed by you because I can see you. You’re claiming your space out there. It’s just it does rely on people like us to go out and help people know that there’s others have been through the same thing. I really loved your work, as well.

Thanks so much for your time.

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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 be talking to Heather Hawkins, ovarian cancer survivor, she is a health advocate, the most adventurous spirit I know, a beautiful person doing good out in the world that advocated for health, for hope, and living beyond your comfort zone! In this conversation, we talk about hope, choosing adventurous life after cancer and making a positive difference out in the world.

Links

Heather Hawkins: Adventurous Spirit on Facebook

Heather Hawkins: Adventurous Spirit on Instagram

Adventurous Spirit by Heather Hawkins on Audible

Adventurous Spirit by Heather Hawkins on Amazon

Video

Full Transcript

Heather, I have a bit of a thing for a first sentence in the book. In your book, the first sentence is: Sometimes our paths in life take us in completely unexpected directions. It’s certainly true, right?

It is.

For yourself as well, and I think when cancer makes an entrance into your life, and for you Heather, a decade ago, your life really took this really unexpected turn, right? Tell us how did all of that play out?

Yes, my goodness, it was 2006, December 2006. I was a busy working mom, I had a 14-year-old daughter and 11-year-old son, and life just is so full of school after school activities, dropping kids off, working hard at the office. I did start to notice this fatigue creeping in and then also a little bit of abdominal bloating, and I was 41 at that stage. I remember thinking, this is probably either menopause creeping in, or I’m overdoing things. Or maybe it’s middle age has spread that I need to get a little bit more fit, a bit more active. Then throughout that Christmas time of December 2006, and then going into 2007, there was some more symptoms that then started to occur.

I was off to the toilet more often than not with frequency with urination. I’d eat small amounts and start to feel really full quickly. My abdominal bloating just continued to grow. It also continued — for every woman at that particular time of month, you do get bloating, tiredness, but when it persisted between periods, that’s when that intuition kicks in. You think, this is not right. This is not normally how my body operates. I thought, I need to go and have a chat with my GP. I’m so glad we have a great relationship with our GP, that I could feel confident to go and talk with him.

I didn’t feel embarrassed. I knew that he would take me seriously just talking about a raft of very general symptoms. Then he would take me seriously and also seek to find answers and have that investigated. That was really the beginning of my fear that this massive shift in my life going from a completely normal world, to suddenly hearing those two words in the same sentence as my name those two words of ovarian cancer.

So many interesting things you said that I want to pick up on, you talked about watching out and listening to your body, things that you knew what not right, and you picked up on those patterns. Then it is about having that courage to speak to your treating doctor, and to bring those things up and to get those things looked into. It’s so vital, isn’t it?

It certainly is and it’s about understanding that this is not how my body normally operates and to sit down with your doctor and to go through all those things that you’re concerned about. I found it really helpful. I wrote out a list so I could go in there. You’re so emotional at that time. If you can refer back to your list, you’re not missing out on things that perhaps are going to be really important with helpful with your diagnosis. Talking that through, he said, “Yes, that does sound serious, I’m going to send you straight off to have a CT scan.”

I was fortunate enough to get into the radiology clinic that afternoon and had that CT scan. I found that really quite confronting that I was taking off my normal clothes, and putting on that white hospital gown, suddenly transforming from this normal life into being vulnerable and raw, and just thinking, wow, I did not expect to be here. Just so anxious, what that scan was going to reveal. A massive shift. Then getting the results that afternoon back in the doctor surgery. Hearing him say those words, then thinking, wow, where does this lead to? What is the prognosis here? How are we going to manage this? With all those questions, as just racing up inside, don’t they?

Absolutely, Heather. I was so also touched by what you brought up as this transition into a different life. You’re exactly right, you put on this gown. It’s like your pathway into a totally different universe where all of a sudden you have to learn this new language and everything that you know changes. To touch on the fact that you said, you went in prepared you made the list of questions because you knew that it’s a crazy time, and you’re likely to get emotional. I think that’s such a great tip as right for whenever you go into the unknown, and whether that’s being of course, around cancer, just health in general is to go in with the list of questions so that you don’t forget in the heat of a moment, which is so easy to do, right?

It is, it’s very easy to do and even also to take someone with you, your loved one or a friend, and that they’re able to ask those questions, perhaps that you forget, or and maybe if you get really emotional and find it very difficult to ask those questions, they can step in and help as well. It is, there’s just so much to sift through, to digest isn’t there. I find perhaps writing notes from that consultation as well. I know with the perhaps my first meeting that I had with my gynecological surgeon that I was referred to after that initial consultation with my GP, you come away and your head is spinning because you’re thinking okay, this now means surgery. How extensive would that surgery be?

Yes. What day are we booked in? Being able to just write down all those things. I love having like a plan in place when, when things are uncertain. You’re not quite sure how they’re going to play out. If you know that you’ve got a plan in place a structure that just helps you cope emotionally so much better, doesn’t it?

Exactly, because you got something to fall back on. It’s so true what you say about not forgetting the little things, because I know, I remember speaking to my urologist. We were talking just about the same, the very same thing about forgetting or just missing a little detail. He told me about a study which I don’t have the details for, but apparently there were studies done around and I believe it’s not to be quoted here, but it was suddenly like that we forget about 80% of what we hear on that first visit to specialists treating you for cancer, because you’re just in that you’re frazzled and you’re in that state of mind. It’s so vital. As you say, take someone with you to take notes so that you have something to fall back on because it’s just such a difficult time, isn’t it?

It really is because you’re you’ve just been taken off in your day-to-day pathway into some new pathway and that it isn’t a very confronting time and I think if you can surround yourself with that support some real clarity. I know our when our imagination gets the better of us that’s when we become so anxious, don’t we and overthink things and think worst case scenario at times. If we’re able to get that clear explanation and that knowledge and understanding of what the treatment is going to be, what surgery will entail that will help us cope so much better.

Also, you don’t feel alone do you if you’ve got somebody with you in those consultations and also in the lead up to surgery. I just remember being so grateful that my family came in on that morning of surgery to have them there, that I could give them get to that last little hug and then be wheeled off to surgery. That just meant so much. It gave me a lot of strength to face that because that is a big day, isn’t it? When you you’re heading off to surgery, you’re relieved that the day is here, aren’t you, but you’re also just quite worried about what the surgery is going to reveal. I remember feeling very torn between those two things.

Absolutely. It’s so beautifully put in the sense that you want that little bit of normality. It’s that waiting. I find one of the most challenging things for me was that constant waiting. You’re waiting to be called up to the oncologist, or you’re waiting to go up to your specialist, so you’re in between things. That’s when you want someone with you, so you can talk about something other than cancer. You can talk about your just normal, everyday life. Heather, when it comes to those difficult moments, because we all have them, right? I want to check in with you, when you look at your cancer journey, you think back on that, what was the most difficult or one of the most difficult moments for you?

I probably have about four difficult moments hearing. Hearing that initial diagnosis that is tough stuff, digesting that. The second hardest thing I think was telling my parents and also telling our children that evening. Trying to find the right words to say, trying to keep it together and not cry too much knowing that that would really upset my parents and my children. Also wanting to share in very practical terms about my diagnosis and what the plan was so that they could hold some positive things to take away from that phone call or that that sit-down time with the family.

The other time was as I was recovering, and I would be going for my checkups quite regularly, going into the waiting room and sitting with other women and chatting with them and hearing their stories. Most of them had ovarian cancer as well. It would really affect me deeply because mine was found stage one, I was just incredibly fortunate that it was found in time before it had spread. Surgery was 100% successful. A lot of these other women, sadly, were undergoing several rounds of chemotherapy, they were going back for more surgery, their prognosis was not looking great. I would come away to so devastated, really upset, trying to battle with survivor guilt.

Thinking what else can I do? I felt quite helpless. That’s certainly has been a very big motivating factor in what I do as an advocate these days. That that was quite confronting. I do find that each year now I when I go back and I have my results, read out to me, you still find yourself transported back to that very first time, don’t you you’re sitting on the edge of your seat, just waiting to hear the news and hoping that it is all going to be good still. For me, I don’t want to be transported back there. I want to keep growing and being well and healthy and trusting my body and moving forward. I mean, I accept if it does return, then I will face that, but it is still a confronting thought. Those are probably about three or four things that I found the most difficult throughout that journey.

Thank you for sharing that. For me, I also find that I have a slightly different perspective on that. I do feel in some weird way, and I don’t want that does come off strange, but I do feel that reconnecting with those early days of being diagnosed. For me also the time when I knew that my cancers’ come back for me in a in a strange way. It’s important reminder of what life is today and I’m not talking about having a perfect life or anything like that. I know that just how close we come whatever stage or phase you’re at, but we’ve lived it we stood or some of us stand on the edge and you looking down into the abyss and one of the things that you realize that for me I think it’s the it’s that we only have this moment today to live our life to be at our best.

Give what it is they can we can to move forward and that’s one well the reason why I really asked you about the most difficult moments and thank you for sharing that isn’t to dwell on it and, but I feel like also those times, they often push us towards an important change in our lives, right? A change where you, you go towards exploring things that you might not have done before. What was that like for you, because you had those changes that made you made you realize certain things about yourself and where you wanted to go?

Yes, because I’ve come to realize that often those low points in our lives are our turning points. That they can be where a big shift occurs, whether it’s in our way of thinking, perhaps it’s our understanding of life, or our goals and dreams, perhaps we need to get a bit fitter, which was definitely the case for me. One of the biggest shifts for me was being grateful. I felt that it was my second chance at life. I was going to make the most of it. My oncologist said to me, however, what will one of the things that will really help you with your recovery is perhaps to do a little bit of exercise. I thought, okay, I can do that. I can now go for gentle walks and things.

Then I decided to sign up and become a volunteer surf lifesaver, my family were really involved. I did have a fear of swimming out beyond the waves and realizing that’s what I had to do if I was to pass successfully. Suddenly, I had those experiences of being out beyond my comfort zone, but finding that I was okay, that I could cope, okay, and learning to trust my body and get active and fit and the joy that that brought and sharing it with other people as well. That really opened up my eyes to physicality again. That gave me the confidence to sign up for that four-kilometer Fun Run. That has just set me off on this whole new world.

That’s beautiful. That’s taken you to beautiful places doing this incredible what ultra-marathons in this beautiful and remote parts of the world. How did you get there? You had the fun run? Then how did you transition to towards the north poll?

It’s a wonderful journey, because I thought 4k Oh my goodness, how do you run 4k that is that’s a long way. I had two and a half weeks to train, and I roped in my two children to run at the local park didn’t even own proper running gear. I just had an old pair of runners and my gardening shorts to put on. Like everything in life, if you start, you make that decision, and you put yourself out there, and I had a go at running four Ks in one go. I wasn’t very successful that afternoon at the park. Pretty overwhelmed. I made a good excuse as soon as I saw a water bubble or to stop and drink.

I went back to the park that next day and the next day. When that four-kilometer race turned up on that Mother’s Day, I got out there and I ran, and I loved it. From there I signed up for there’s a fantastic event called the city to serve, which is a 14-kilometer run. That was in August, which was about three months after that 4k run. Then from there, I signed up for a half marathon. It’s like these steps that I’m taking you know to get sign up to an event that slightly longer than that will give me time to train up so that I can stand on that start line feeling fairly confident and not too nervous about taking that distance on. Then I ran a marathon the next year that was in 2013.

It was actually at the start of the Melbourne marathon. I was catching up with a friend in 2014. He just happened to mention about marathons run on ice and he said if you’ve heard about these, they are so crazy, and you reckon about doing those and so I thought I’m going to look that up. I spent the whole Melbourne marathon running along thinking about ice and penguins and running 42ks and how exciting that would be. Anyway, that was the one in Antarctica which wasn’t available. I found out about the North Pole marathon which was being run in April 2015. I was turning 50 at that stage and it was also our 25th wedding anniversary, and we decided that we would go to Paris we had always wanted to go to Paris to celebrate so it all tied in perfectly.

We’d be over in Europe we could catch the plane up to Svalbard and meet the other race competitors, all 44 of us. Then from there on rather very old Antonov aircrafts to fly up to the ice floe at the geographic North Pole. Every year there is a temporary research expedition based set up, and it lasts for six weeks. People arrive at the pole to go to trek to run to research. There we all were 44 competitors from all over the world, all completely decked out in our thermal year on our running shoes, and ready to run 12 laps around this research base. That was a total of 42Ks. It started out, it was a quiet, quite mild conditions minus 26.

Clear skies, the sun was trekking around the horizon as it does at that time of year, which is just so beautiful to watch. There are strategically placed snipers just in case a polar bear wanders across the course that they could definitely encourages you to run fast. You set off the start again, guys, and away you go. I just remember thinking, wow, my goodness, I’ve just turned 50. Here I am, I’m having an adventure, and I’m going to celebrate life. Each lap I had dedicated to, to somebody in my life, whether it was other women with ovarian cancer to my family, to different people.

That gave me just such wonderful inspiration and courage to keep going and the conditions changed. It dropped to minus 41, the wind picked up, it was bitterly cold. I persevered. I kept going. I felt strong. I all those things. I think you learn from going through an experience like having cancer, you build that courage and that resilience up, and you keep on going. It was fantastic. It took me a long time to run a lot more than a normal marathon. I did it in seven hours, 53 minutes and crossed the finish line in first place female, which was a wonderful surprise and a great celebration.

That’s so powerful. I love hearing that and I know this was obviously some time ago, they’ve done so many wonderful things. Congrats to doing that and getting the courage and making the decision to do that. I think you’ll find it’s so inspiring is that idea of taking the first step, because what I’m hearing you say is, it’s making a decision to try something out. It started with that early dam just wanted to get that first. That first round was I think it was fought for kilometers, starting with one thing and then going and building onto it and then seeing where life takes you, isn’t it?

It is, this Is it because in the process you grow and I did hear someone wants make a quote that there’s no such thing as failure, but it’s learning and, and what may be a difficult experience that you go through and perhaps you’re doubting yourself and you maybe you think well I haven’t done a very good job or I’m not up to scratch, I don’t measure up. No, put those doubts aside and give something a go and then you can adapt, if that doesn’t work out or if you don’t feel great, then adapt and you’ve learned through that situation.

You can always be moving forward and learning and feel that you you’re on a journey throughout life that you’re not just feeling that you’re staying in the one place and that you’re just embracing the things that that that happen and then just wanting to give back and make a difference in this world and that’s another thing that I love with my races that they’re a fantastic vehicle not only to raise awareness, but funds to help with cancer research and Cancer Support Services. That for me has just been this beautiful way of giving back and a new way of finding fulfillment in life. All that’s sort of unfolded over these last few years. That really means a lot to me.

That is so beautiful. I love hearing that and your incredible work you’re done and several funds as a health advocate. Tell me what’s inspired you to take that first step. How did it come about and, and also how did it feel to you?

I think I’ve always grown up, taking on what a lot of my parents’ qualities about giving back and being part of the community and carried those through. I think as I was recovering from Cancer and meeting those other women think and thinking, you know what, what difference can I make. Then when I started running, I thought this is this is a really great platform to be able to raise awareness about the signs and symptoms, so that men and women so that they can learn about those signs and symptoms about ovarian cancer.

Also, what’s the support services that there are available that you’re not alone and Ovarian Cancer Australia are fantastic with a lot of the resources, they have their support nurses, their resilience kit, which is a really comprehensive, informative kit that they post out to anyone who needs a kit like that, so that they can learn really great information about their condition. There’s a fantastic program called survivors teaching students where we actually are talking about our personal journey through a Varian cancer and talking to nurses and medical students.

For them to hear about this diagnosis from a living breathing person as opposed to a textbook scenario. It’s really quite profound. It’s a very emotional experience. It’s a way that we can feel that we’re making a difference. That for future patients who are diagnosed, that perhaps will make that diagnosis a lot easier for them that they can be diagnosed earlier, and really help with their care as well. It’s just finding those ways that I can give back is there, that main driver, and just you’re stepping out there and giving things a go, that’s how I just loved to tie in all those different things. Also, within my book as they’re talking quite openly about my cancer experience, so that that can be a terrific tool as well.

I love hearing that, because you’re such a given person even remember, I was I was just struck with the beginning of our conversation, because we did chat on the phone the other day, I remember like we were talking about what is the day’s going to look like and you said, I’m going to give a friend a lift for chemo, and I was really touched by that, because you’re just this shining example of giving back in whatever way it is that you can, which I think we all can do. It’s also not only about giving back in the sense that making a huge difference. By the way, I really love hearing about your survivors’ teaching students because it really transcends that learning experience, because we really are a team and we with our treating specialists, and we all work together. When they get to hear about lived experience, and not only here, but become immersed in what that’s like is you have a beautiful way of talking about your experience in your book, and in obviously, just sharing that out loud.

I think it’s so vital to connect for our nurses, for our doctors, for the surgeon for oncologist to really understand and what it feels like and what are the challenges that are facing you as a patient? What sort of things? How does your life transform and the challenges you might be facing as a survivor or a person living with cancer, because all of that is a completely different layer of what you can do. You also touched on how it makes you feel that you are given back. Can you let’s dive into that a little bit.

Giving back is vital, but I think what is often underrepresented perhaps is how it makes you feel like as a person who is doing something positive out in the world in whatever way that is for you. You’re just doing these amazing things. Other people just have different ways and we’re all sinners want to find that and bring that out. One of the people and I’m not ashamed to say that I think it’s transformative for you because you’re doing something that makes you feel like you belong to something greater. Talk about that. What’s it like for you and your world and how it makes you feel.

I do I feel so much more connected by putting myself out there and it can be on that one-to-one level, as you were saying, I went to pick up my friend from chemo and I always make sure that I’m available on a Monday afternoon so that I can be there and that we can go for a walk and have a coffee and talk about completely normal things. being there as a support and I get so much back from that as well that I feel that I’m helping her through this really tough time.

It’s also if you’re feeling that you’re able to change the landscape and change that conversation that’s happening and help with the education of younger women. I’m also part of a couple of Facebook groups so that we’re able to share amongst ourselves just so openly. It’s that sense of never being alone, that no matter what we’re going through, that we can connect with each other, that someone will always be there to support, whether it’s a little word or a very long conversation, or many long conversations that go on. I think it’s so important for us to all play a role and see what we can do, like take a step back going, Okay, what, what is the thing that I can do to help bring change here. if we can come up with ideas and step out there and make it make a difference.

Then what we get back is just so amazing, isn’t it? It just, it’s interesting, because we don’t go in wanting to think what I can get out of it. Boy, you get so much fulfillment and purpose, like it’s brought so much purpose into my life, being able to not only be an advocate, but to be out there perhaps different speaking engagements, raising, raising that awareness, knowing that I can keep being a voice that I can speak for those women who have sadly passed away from ovarian cancer, that I can be their voice to continue on and, and make that difference in that space. It’s just so many things that are that are wrapped up within that motivation, isn’t there? It definitely keeps me going.

When I’m doing events, in the Sahara Desert, I was running the marathon (inaudible 31:41), which is a long-distance race. It’s 250 kilometers in seven days out this desert. There are times you can imagine with those types of races, not everything goes to plan. there are moments where you just think, my blisters, or I’m just feeling so hot and tired, I just want to perhaps curl up under, under a rock if I can find one. It’s those times where you really do look, look within and find that comfort and that purpose and that drive and you think about those, those people that you’re doing it for and that spurs you on, you get back up again, and you finish that race and know that you’ve made a difference. It is all those things just tied up in a big bundle in our lives that, that give us that motivation and that joy and that hope.

Absolutely. I also love how you talk about that you describe it in such physical terms, because I think it helps us Exercise and Movement. Even that in itself is such a huge driver in reconnecting with our sense of being and who we are. You’re out there, you’re exposing yourself to these extreme elements. We’re all different. Some will not go out, right? Go for this incredible run-in sub-Saharan desert. We all have our ways to get in touch with our own bodies and, and whether that’s through yoga, whether that’s through meditation, whether that’s through some movement activity that helps us feel more alive. I think that’s such a huge part of life. After cancer, feeling more alive, more present more in the moment? More engaged? Like you said, it’s another chance of life, isn’t it?

It is it is. It’s such a defining moment where we suddenly think and look at things with new eyes, and we realized we want to be as healthy as we possibly can. we want to engage with as many people as we can make a difference. Trust our bodies again. I’m all for yoga and having an ocean swim and a walk. It just helps so much doesn’t it sit under a tree in a park to go and have a trek or look up at the mountains.

All those things just really fill our soul and fill our cup back up again. It’s about looking after our mental and emotional welfare as well. It’s all tied in together with our physicality, and to be kind to ourselves, and there will be days where we don’t feel as well as others and to listen to our bodies and perhaps just have that shorter walk or just to sit or write in our diary. To give ourselves that permission and be kind to ourselves and just in enjoy taking those that first breath in the morning, when we wake up and go this is a brand-new day and I’m grateful to be here. let’s see what this day will bring.

I’m so glad that you brought this up Have is like being kind to yourself. Sometimes when we we’ve been through a difficult time, isn’t this we’re so harsh to ourselves, right? I mean, it’s weird that sometimes we can be so kind to other people that sometimes we forget to be kind to ourselves, right? If you’re whose life has been touched by cancer and you want to make a difference in some way. You don’t really know where to start, what would you suggest to what are some of your thoughts around that?

Yes, I would make inquiries. Whatever cancer it is, whether you’ve had or a loved one has had, there are a lot of different foundations that are related to those particular cancers. I would say find out about them and see how you can get involved. There are a lot that need help with fundraising, don’t they perhaps organize events? To connect there be part of support groups, be advocates? There are lots of things that you can get involved with that way. Also, if you wanted to do your own fundraising, sign up for an event? Things like that. don’t doubt yourself think, how can I get involved?

Where can I bring some new value? Just get connected with other people and see how I can bring change? I think we’re all wanting to increase and improve those survival rates? Aren’t we for the different cancers that there are? presently, for ovarian cancer. It’s only 48% of women survive beyond five years, that every day five women are diagnosed here in Australia, and sadly, three women passed away. if we can somehow be a voice and help to bring change, improve those survival rates, but also improve the quality of those people diagnosed and their quality of life that he had, that will be a wonderful thing to get involved with to do.

That’s so beautiful. I think it comes back to what we touched on earlier, we talked about that, making that first step because you never know where those things are going to lead you. They’re going to expose you to different things about life, and you learn about yourself, and you learn about things that are important. they and, and we start to look at and pick up on different opportunities that perhaps were not there before. It’s so important to start somewhere, and then see where that takes you.

It’s that first step. it doesn’t have to be a big one. This is how I look at everything that I have encountered or taken on that it’s that first initial tiny step, and not to doubt yourself, but just take that first tiny step with an idea that you have. Then take another tiny step and another one, another one, and then you find yourself wow, actually, look where I am. I have achieved that, that first goal that I had, and then you can set bigger goals from there. You can bring people along with you. This is the thing, not to doubt yourself, or stop yourself from taking that first step. Just be happy.

Be okay with stepping out of your comfort zone and trying something new because you never know where it will take you. That is one of the beauties of life that from when you’re growing up, you can certainly take it to a completely different pathway when you’re older, that you don’t have to stay on the one pathway and be doing something that you expect that you will be doing for the rest of your life. You can take other little tangents in life, head off and do other things. It’s your one precious life that you have and to make the most of it. I would just say don’t hold yourself back. Take that first step whatever it is that you want to do in life, give it a go.

I know that hope is such a big part of your life. What does hope mean to you?

Hope for me means that that there is life beyond today, there is quality of life. That is something that if we can all share hope, then the future looks brighter, doesn’t it? If we can encourage other people in life that’s one of another motivating factors with my running that I love to encourage others to, to run or to get fit, and to show them that like I’m 57 now that you can be 57 and still get out there and run ultra-marathons that they’re there. The future does look good and bright., and yes, it’s all about living with that that positive mindset. I mean, certainly acknowledging that tough things happen. holding on to that hope within that gets us through those dark times those difficult and challenging times. Hope definitely is one of those words that I remember when I was waking up in, in recovery, after surgery, holding on to hope that everything would be okay, that we would get through this journey. Yes, that second chance of life would lead on and, yes, I would have another day.

So powerful, Heather. If somebody wanted to find out more about your book, and about everything that you do your adventurous spirit? Tell us? What would they do to find out more?

Yes. I’m on socials, Heather Adventurous Spirit on Facebook and on Instagram. Also, my book is available. All the hard copies have sold out. I have recorded it with Audible books. It’s available as an audible book with Audible.com. It’s also available as an eBook for Kindle or for other devices on Amazon and Booktopia. Book Depository. You can find it as an electronic version. I’m so excited to be able to share a copy with one of your listeners. That I was able to send to you, Joe and that that means the world.

Thank you so much for doing that. I’ll be putting that out on social media. I know our listeners can write in for their chance to get a heather Hawkins’s book, Adventurous Spirit to get your copy. Or go out and buy it or send me an email at [email protected] for your chance to get a hardcopy of Heather’s beautiful book with a handwritten inscription. Heather, thank you so much for being here. I want to also thank you not only for your time, and your insight, but also, I want to deeply thank you for the work that you do out in the world. Thank you so much.

Thank you so much, Joe, for the opportunity to share and thank you for all that you’re doing as well. You’re making a massive difference, since it’s so appreciated. Thank you.

People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today:

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I was lucky to guest on Men With Spirit radio show – Peter and Steve are doing an amazing job in inspiring men to live a spirited life. Turns out, Peter has been going through prostate cancer so I knew he’s going to bring his unique way of seeing things – and we have got that in spades! Tune in to the episode as we discuss:

Links

Men With Spirit on Facebook

Men With Spirit on Instagram

Episode 072: The Magnifying Glass of Adversity with Lee Silverstein

People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today:

I will never give out your email - view my Privacy Policy

Links

Episode 077: How To Apply Mindfulness After Cancer with Dr Ronald Siegel

Episode 075: Meaning of Life After Cancer with Dr William Breitbart

Episode 072: The Magnifying Glass of Adversity with Lee Silverstein

People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today:

I will never give out your email - view my Privacy Policy

Video

Links

Episode 039: Exercise Boost Through Treatment and Recovery

Episode 002: How Exercise Helps Crush Cancer

Register for Stable and Predictable Life After Cancer Webinar

People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today:

I will never give out your email - view my Privacy Policy

Video

Links

Episode 039: Exercise Boost Through Treatment and Recovery

Episode 002: How Exercise Helps Crush Cancer

Register for Stable and Predictable Life After Cancer Webinar

People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today:

I will never give out your email - view my Privacy Policy

Cancer is no laughing matter, but finding humor through life can help us get through the difficult times and make sense of our journey. My guest today has made humor a way of life, and Michael Shafar has flipped his cancer experience on its head to live it up as part of his stand up.

Michael is awesome because in addition to all things funny, he also makes a contribution towards supporting cancer clinical trials for below the belt cancer that we talk about today!

Links

Michael Shafar (official website)

Michael Shafar (Twitter)

ANZUP Cancer Trials Group Limited

I put this book together to help you thrive in times of uncertainty (plus find out how you’ll be helping ANZUP cancer trials):

People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today:

I will never give out your email - view my Privacy Policy

You cannot choose cancer, but you can choose what comes next – Dr. Wendy Lichtenthal

Wendy helps people who go through cancer and I love the unique perspective in understanding your cancer experience to create the new normal that helps you move forward in life.

Here is what we cover in our discussion today:

Links

Dr. Lichtenthal at Memorial Sloan Kettering Cancer Center

Wendy Lichtenthal (Twitter)

And check out my brand new book on thriving in times of uncertainty:

People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today:

I will never give out your email - view my Privacy Policy