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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