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Transcript: Being a Bladder Cancer Beacon of Hope with Karen Godfrey, Part II

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Voice over:This is Bladder Cancer Matters, the podcast for bladder cancer, patients, caregivers, advocates, and medical and research professionals. It’s brought to you by the Bladder Cancer Advocacy Network, otherwise known as BCAN. BCAN works to increase public awareness about bladder cancer, advances bladder cancer research, and provides educational and support services for bladder cancer patients and their loved ones. To learn more, please visit bcan.org.  
Rick Bangs:I’m pleased to present part two of my three part conversation with BCAN bladder cancer patient advocate, Karen Godfrey. In it, Karen and I talk about how the Bladder Cancer Advocacy Network Inspire community got started, and what she has learned from being a moderator in a group that now has more than 53,000 members. Here’s part two.  
 I’m going to argue that you are in fact, a key ingredient in the secret sauce, if not one of the chefs. I don’t know how to characterize you, but you’re a large factor in this success. So tell us, what do you do on the BCAN Inspire site and how do you actually do it?  
Karen Godfrey:In the beginning, there were about four of us that were considered moderators. And I know you remember Jack Moon and Keith [Hustus 00:01:25]. Jack went on to help start the Canada Bladder Cancer Advocacy Network. And for the first two to three years, those two guys were kind of my right hands too, in helping to monitor the site.  
 A lot of people don’t realize that we don’t need to now, really be the face that you see, because the membership has grown so large and there’s so many people out there that are offering support. Our job really is to monitor the post through the day. So my job, as I see it, even though it’s a volunteer job, is, I’m looking at the Inspire site on a daily basis. I’m looking at new posts, I’m looking at how many people have replied, if no one’s replied. Maybe offering somebody the opportunity to go in and connect with that person.  
 So sometimes through private messages, I’ll say, “Hey, do you want to answer this particular post?” We do the background things that you don’t normally see. And with the growth and the participation that’s going on, the group leaders really don’t need to be chiming in on all the posts. Where at the very beginning, when there was like 15 posts a day and whoever might have BCG treatments going on, they would be the ones that would go with Jack because he was the one doing BCG treatments too. So, we kind of split it up as to who we were and what we knew and what our experience was.  
Rick Bangs:Sure. What are the biggest challenges to the job and what insights have you gained from doing this work?  
Karen Godfrey:Oh, the challenges are so many. When a person comes to the community, they fill out a profile and they choose a screen name. A lot of times when people are joining, they don’t realize whether or not they’re even going to be a participant. They just may be joining just to read. And so in their profile, they don’t give a lot of information. And I wish that everybody would, at the time they join, put as much information in their profile as possible. Sometimes when they ask a question, if you knew that they already had had BCG treatments and maybe their issue is something that happened from that, when they’re saying, “Burning and urgency in my bladder is really a mess,” you can answer their question much better by knowing that it could possibly be from their BCG treatment. So having the profile filled out, is really important.  
 I still long for so much more public awareness. The majority of people that come online are still new babes learning, even though we’ve made a lot of great strides and you and I have seen so many things happen that have been so good. But we’re kind of like a broken record. We are still answering the same questions to the new people that are newly diagnosed. And now, we can send them back to BCAN and say, “Hey, there are guides in there for you to download or ask to be sent to you on, what is BCG and what are the three diversions?” And now there’s even information on there on the trimodal that [inaudible 00:05:16] didn’t happen five years ago. So, so many things have changed and so many things are still the same.  
 Dealing with loss in our community is one of the still most difficult challenges that we face. And we have lost so many fantastic advocates because they were not able to overcome. Keith, as I mentioned earlier, is one of those. And those of us that have been there for a long time, remember Davy, oh, so well. Pat [Befit 00:05:50] is another one. There’s just so many that we’ve lost that even though the time that we had with them and the advocacy that they had helped so many, it’s just heartbreaking to see that we’re still losing members.  
Rick Bangs:Yeah. And it becomes a personal relationship with these people online. It’s like you know… A lot of people you get to know from the online side. And often, people reach out and connect with these people in person, over the phone, or literally in person, finding somebody who’s local to the area. So, these become relationships, right?  
Karen Godfrey:Right. And that’s, what’s happened with you and I.  
Rick Bangs:Yeah, yes.  
Karen Godfrey:And I count a lot of my friendships from my association with people in the community. The empathy that we feel for one another, I think, is what impels us and what draws us to one another.  
Rick Bangs:Okay. So you have challenges, but I know there are rewards from this work. So, what makes this work special to you and something to which you dedicate a huge chunk of your life?  
Karen Godfrey:It’s a two edge sword. There’re challenges and there’re rewards. Part of the rewards are in meeting new friends and being able to see people come in and have a life threatening disease. And then 10 years later, they’re still here with us and they’re doing wonderful. That’s a reward, just knowing that you’re able to calm somebody that’s been newly diagnosed and helping them understand that they’re not alone in whatever is to happen down the road with them. Watching people come on and become their own best advocate and learn that they really are the most important item in their survival.  
 Seeing members navigate their diagnosis and then turn around and give back. That’s a real joy. So, that’s a huge reward. And it brings a smile on my face, every time I see someone that’s been a member for about a year or so. And then their posts, I can tell, or their replies are really honing in on what’s important for that new member to know. So, it’s like, “Go girl.” Or, “I’m so happy you replied to that post.” Those are the things I think when I read it. It’s like, “Good for you. I’m happy to see you out there doing that.”  
 When you get a thank you, even if sometimes all you’ve done was listen and maybe offer them a tip that someone else hasn’t given them yet, that’s the reward. When someone says, “You’ve been a lifesaver.” Well, you really haven’t, but at that point in time, in that day, you were.  
Rick Bangs:Oh, yeah. Oh, you actually have been. You may not feel like it, but you definitely have been.  
Karen Godfrey:The changes that have happened and the new protocols and the treatments that are out there that weren’t there when you and I first came on board, are part of the rewards too. Seeing the side effects and the things that are out there that we have to keep up with our learning as to be able to help people navigate. I still think about myself, when I had my diagnosis, I just assumed, if I didn’t die, then there must be a fix. And somebody was going to give it to me. I didn’t know all of the learning that was going to be necessary for me down the road.  
Rick Bangs:So Karen, with all your Inspire experience, what advice do you have for somebody who is just diagnosed and might be hesitant to join Inspire, or some other online group?  
Karen Godfrey:That’s a really good question, because there’s a lot of people that really think of the support group as a downer. And I’m here to tell you, that’s really where it is. And that’s the only place that you’re going to be able to pull yourself out of that hole that you initially fall into. Don’t hesitate to reach out. Those of us that have been there and maybe done that before you, have a lot of things we can share with you that will calm your fears and help your anxiety level to a great degree.  
 As I’ve said earlier, you have to be your own best advocate. And don’t assume that your current uro is really up with the latest and the best options. So sometimes, just by signing onto a support group, you find things that your uro didn’t even mention to you, so you can take that back to them. You need to learn as much as you can and know that your story and your diagnosis is also a teaching tool for us. So knowing that you don’t have to do this journey on your own and alone, is really the main emphasis for why there is a need for a support group.  
Rick Bangs:And you and I both kind of walked alone, so we would understand that. And we’ve talked to so many people who have benefited from just having a conversation with us, so great advice.  
Karen Godfrey:Right.  
Rick Bangs:Okay. So now, you’ve read, what I’m going to guess, is literally thousands of posts to the Inspire site. So, what are some of the typical concerns you would hear from patients or caregivers?  
Karen Godfrey:Well, the typical first post goes like this, “Just diagnosed with bladder cancer. What do I do now? What do I need to know? I’ve never heard of bladder cancer before. Is it serious? My husband, my wife, my father, my mother, my sister, my brother”, whatever fits, “has just been diagnosed. What do I need to know to help them?” And then later on some of the learning and the various treatments have come up, so then the questions are, “Can you tell me what all these definitions mean? How do I decide on treatment options and the diversions?”  
Rick Bangs:Yeah. That’s a common one.  
Karen Godfrey:Yeah. “How do I advocate for myself?”  
Rick Bangs:Yeah.  
Karen Godfrey:And then also, second opinions. There are so many people that are unsure of even stepping out into that realm and asking for a second opinion. They don’t want to upset their doctors. And, “Has anyone had any of these side effects?”  
Rick Bangs:Right.  
Karen Godfrey:They also want to know what tips they can get to learn with the diversions that they have. So, the questions from day one of being on the Inspire BCAN site, really haven’t changed. Everybody comes on with the same illiteracy and the need for knowledge.  
Rick Bangs:Right. Right. And these daily living tips is not something you can always get from your doctor.  
Karen Godfrey:Right. I’ve said several times, we are so fortunate to have these experts and these surgeons and these urologists that are doing so much for us. But they only know the mechanics of making the devices or giving us the treatments. They don’t know how we live with our situation.  
Rick Bangs:I want to from your online experience to your in-person experience. And I think this is true for many of us, networking connections lead to additional possibilities and other connections. And I think that’s true for you. So Inspire was, I believe, catalytic in the creation of your Southwest Florida Bladder Cancer Support Group, which is an in-person support group. And you started that back in 2008. How did that happen?  
Karen Godfrey:It happened because of Inspire and the online community. Through my acquaintance with Golfer Dave and [Fallon 00:14:07], who happened to live in my area, we decided that we wanted to meet in person and say, “Hello”, and get a connection there.  
Rick Bangs:Now I just wanted to be clear, on BCAN Inspire, you can go and you can look for people within certain mile radius. Right?  
Karen Godfrey:Yes.  
Rick Bangs:And that’s what you did. You actually used that capability to find what you’re describing as, Golfer Dave and Fallon.  
Karen Godfrey:Right. And by looking at the profiles also, you see people that are in your state, if they filled out their profile and said that. But that’s what I did because I looked and I saw, “Oh my goodness, we’ve got like 15 or 20 people within a 50 mile radius of my hometown.” And so having that ability, you can do private messaging with people that live close to you. And that’s basically what happened with Golfer Dave and Fallon.  
 And we got together at a restaurant said, “Hello.” And it wasn’t long then, until Dave said, “We need a support group, locally.” And in subsequent conversations, he said it more than once. And so we decided, “Okay, we’re going to try.” And basically what we did was, I put out private messages to these people that were within a certain mile distance of us, and asked them if they were open to a support group. And I also made an open post on the Inspire site asking that question.  
Rick Bangs:Sure. Which makes sense, because you’re in Florida and people do go to Florida from time to time.  
Karen Godfrey:Yes.  
Rick Bangs:So in addition to why it would normally be worthwhile, it would be particularly important in the case of Florida where people go and vacation.  
Karen Godfrey:Right. And that is exactly what has happened with our support group down here, is we’ve evolved into having a lot of members that attend our meetings in the wintertime when they’re down here, say, October through may. Because we also do a newsletter they’re connected with us year round too. But that’s basically how we got the idea to begin. And that’s where we found the people to start out with.  
Rick Bangs:That’s all the time we have today for part two of my three part conversation with BCAN bladder cancer patient advocate, in 2002 BCAN of Hope award winner, Karen Godfrey. Stay tuned for part three of our conversation in which we talk about how her participation in the BCAN Inspire community, led her to begin an in-person support group in her native state of Florida. Karen also gives us some valuable advice for those who might be thinking about starting a support group in their hometown.  
 In case you missed part one, be sure to visit the BCAN website at bcan.org/podcasts. You can also subscribe to this podcast by searching for bladder cancer matters on your favorite podcasting platform.  
Speaker 1:Thank you for listening to Bladder cancer Matters, a podcast by the Bladder Cancer Advocacy Network or BCAN. BCAN works to increase public awareness about bladder cancer, advanced bladder cancer research, and provide educational and support services for bladder cancer patients. For more information about this podcast and additional information about bladder cancer, please visit bcan.org.  

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