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 th
