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

July 20, 2022

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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:

In segment three of our three part conversation with BCAN bladder cancer patient advocate and 2002 Beacon of Hope Award winner Karen Godfrey, we talk about how her online support community Inspire help lead to in-person support group meetings that take place near her home in Florida. She also gives valuable advice to those who might be thinking about starting a support group in their own area.

Karen Godfrey:

Our support group started out very small. We really didn’t have any idea of how to go about doing it. We just knew that we needed to have personal contact and to connect with people locally that might not even be on Inspire. That evolved into putting a notice in the paper. And then because all three of us were going to different doctors, we used our local uro to help get the word out that we were going to be having a support group.

Rick Bangs:

Yeah, I was going to ask you, where did you meet?

Karen Godfrey:

We started a meeting in restaurants and that turned out to be the way that we met for the first probably one to two years. During that time, we were looking for locations to meet. We asked our urology practices if they had conference rooms that we could use. We eventually started going to the library. That was like over a year or so that we were in a library. I had a contact with an oncology nurse in the Lee Health Group. Over a period of three years, I was asking her on a regular basis, “Is there any chance that you can find us a conference room?” Eventually she was able to do that. Probably for the last 10 years or so, we have been meeting in a conference room in Lee Health Regional Cancer Center.

Karen Godfrey:

We’ve been independent of Lee Health in that I was the facilitator and I had a liaison that kept track of our meeting dates and made sure that we had the room and things like that, but they really weren’t involved. It’s just been within the last two years, basically since the pandemic, that they had to get more involved because all of their support groups were not able to meet. That’s where they decided they would try to set up Zoom or WebEx meetings as it evolved. Because of that, I now have an oncology nurse that is assisting me and she really is not facilitating the meeting. I’m still doing that, but she and I work close together.

Rick Bangs:

Wonderful. All right. What does your support group do? Because you started in restaurants and I know it’s evolved. Is it mostly presentations? Is it conversations? Are there events and is there event planning? How does the scope of this support group go?

Karen Godfrey:

I learned early on that we needed some sort of connection at all times, so a newsletter goes out. And that newsletter has evolved over the years because of Snowbirds and because of different urology practices that we’ve gotten acquainted with. Our newsletter goes out to several different urology practices. It goes out to Snowbirds. It goes out to people that I have come in contact with through the Survivor to Survivor program also, especially if they happen to be in Florida. Anytime I talk to someone on the Survivor to Survivor and they don’t have access to a local support group, I usually ask them if they would like for me to add them to my newsletter. And that way they can get some information from our group, regardless of whether they have one locally.

Karen Godfrey:

As far as what we do in our meetings, we’ve had presenters. We’ve had doctors come. We’ve had nutrition experts. We’ve had yoga, home healthcare providers. We’ve even had the Photocure people come and give us a presentation on the Blue Light. We’ve really honed in on being support for the individual. This is where I think the beauty is in person support groups. It’s always evolving as to who’s going to be there. It’s always a mix of stages and grades and whether or not a person is considered in a stable situation, they’re doing watching and waiting, or whether they’re in active BCG treatment, or maybe recovering from surgery, whether they’ve recently had a Neo, an Indiana pouch, or an IC, or whether or not they have had a diagnosis of metastases.

Karen Godfrey:

In the years that we’ve had our support group, we’ve lost about 12 people. We’ve seen all areas of what this disease can do for us. I think one of the main reasons that I feel like the in person support groups really fit is because someone new that has the diagnosis that doesn’t know the questions to ask, they can attend our meetings and not ask a question, but just listen. And by listening, they get more of the big picture. They find out that it’s not a one size fits all disease. They also see that we have a lot of fun. It may sound a little strange, but our meetings are uplifting. They’re not downers. We have jokes, and we’ve got a couple of people that always bring a joke for us.

Karen Godfrey:

There’s a lot of laughter and sometimes there are tears, but it’s a matter of empathizing, but not wallowing, if you understand what I mean.

Rick Bangs:

Mm-hmm (affirmative). Sure.

Karen Godfrey:

I think the pandemic has just zeroed in for all of us how important it is for all of us to have in person physical contact. The telephone and Skype or Zoom or WebEx, we can see one another, but there’s nothing that beats being able to sit across the table from somebody and look them in the eye. The tone of the voice, the direct interaction between one and another is something that you cannot get in any other way other than in person.

Rick Bangs:

I think you’ve been really smart about the partnering. You’ve reached out through Inspire, but you’ve also reached out through urology practices. You’ve got this nice comprehensive topic list that you work. I think all of that in an in person context is just… I mean, I think it’s just a powerful combination. Do you leverage BCAN materials in your support group?

Karen Godfrey:

Amen. If I hadn’t had BCAN in the background, I would’ve been lost, because here we are, we’re just patients out there right. In the beginning, I’ve watched BCAN go from not having anything but brochures that told who they were, to being able to have guides and little one trifold that you can hand out to people. I always try to have the bladder cancer basics for the patient, for anybody new that shows up at our meetings. I have made myself little business cards that I give to new people that has the important information on it, so they’ve got something that they can get back to us easily with. The fact that we want to be there, not just that one time a month that we meet, but we want to be there throughout the month if someone has an issue.

Karen Godfrey:

I usually try not to involve too many of the members as that being the go-to person, but I tell everyone, “If you need something, get in touch with me. I’ll put you in touch with them.” And that way people have the opportunity to connect at their convenience and if they feel comfortable in doing it.

Rick Bangs:

Right, right, which is one of the Inspire hallmarks, right? It’s there 24 by seven. It’s actually got global membership. You can post something and you can hear at all kinds of times, get a response.

Karen Godfrey:

I think you and I can understand too because basically that’s what BCAN has done when they started to think tank. They realized that getting the experts together and the urologists, it gave them the opportunity to network. I don’t think a lot of the inroads that we now see in bladder cancer would have been made had these doctors not been able to have that working weekend that they could say, “Okay, what have you been doing? What’s happening in your neck of the woods?” It gave them the opportunity to really get the protocols down pat.

Rick Bangs:

Right. I’ve always said that when you go to these scientific meetings, what happens in the meeting is one thing, what happens outside the meeting is sometimes as important in terms of building connections, sharing ideas or concepts or asking questions that you wouldn’t have an opportunity to ask if you were in a virtual meeting necessarily because you get the presentation and the meeting’s over.

Karen Godfrey:

Well, it’s kind of like our conversation today. One question you asked me might jog my memory to think of something else that I wouldn’t have thought about prior.

Rick Bangs:

Tell me about some of the most successful or best received meetings in your Southwest Florida Group.

Karen Godfrey:

I would say given the feedback that I have gotten with some of our members, some of our best meetings have just been when it was just us and it was just individuals giving us information on what their status was and it provoking questions from other members that might not be in that timeline yet. But it’s like it’s free flowing. They learn by listening. They learn by asking questions. Occasionally, I’ll have somebody say, “This is the best meeting we had in a long time,” and all we did was sit and talk to one another. To give you an idea of a goal that I have always set for myself when we have any of these meetings is to make sure that everybody is comfortable, to make sure that everybody has the opportunity to speak if they want to, but not if they don’t.

Karen Godfrey:

That everybody has an opportunity to get to know the people that are in the room with them. Sometimes people are a little bit slow in giving a lot of the facts about their diagnosis. Once we get to know who they are, and we’ve got a room full of say six people that pretty much know everything about one another and we get one new person coming in, it’s important that that new person get a quick overview of who they’re sitting in the room with. Sometimes we just kind of do, “Okay, let’s go around the room. Give me your status in short little blurbs. Don’t give me the whole story. Just give me your status.” And that works real well to help the new person learn real quick what the level of the disease is in the room.

Rick Bangs:

Right, and to understand who’s before them, who might be somewhere down the road maybe, or hopefully not, that kind of thing, and who they might talk to.

Karen Godfrey:

One thing that you haven’t asked me yet, and I’m not sure if it’s on your list is, how do you start one? How do you create a support group? We kind of talked about that and how we went about going to get the one down here in Florida, but I’ve always thought that for anyone who might live in the Midwest and there’s no support group in their area, they’re thinking, “Oh my goodness, what do I do?” I think there’s like three or four things. They just need to ask themselves. First, recognize you’ve got a need in your area. And then do you desire to serve in any capacity along that line to help people? And can you commit? And then after that, it’s a piece of cake.

Rick Bangs:

I think this is an important point, right? Because it doesn’t have to be this big onerous thing. It can be small, it can be intimate. It can be informal. There’s lots of material available on the BCAN site that can be leveraged. There are urology practices, if you get to the right person that would be more than willing to participate in an activity. It doesn’t have to be this big onerous thing.

Karen Godfrey:

No, and you don’t have to know everything. I feel so inadequate so many times just because I’m just like everybody else in the room, I’m just a patient, or I’m an advocate for the patients. We rely on a lot of the vetted materials that BCAN has out there. Knowing that we can go to webinars and now knowing that you guys are doing regular podcasts is a really great way for people to be at home and to learn. I’ve also learned about the Greenberg Bladder Cancer Institute in Johns Hopkins. I have also directed people to the Cancer Support Community that was beginning with or known by most people as Gilda’s Club.

Karen Godfrey:

There’s a lot of places out there for help and that everybody is willing to share. Some things that BCAN cannot do, the support community might be able to do in offering financial aid sometimes. The Cancer Support Community can put you in touch with other people sometimes. Being consistent in knowing how to help people find ways for support other than just online or in person makes a huge difference. Some people even have a hard time being able to come to an in person meeting because of travel restrictions.

Rick Bangs:

No question. Have you got any lessons learned or advice you’d like to share?

Karen Godfrey:

There’s not a handy little cheat sheet.

Rick Bangs:

Unfortunately not.

Karen Godfrey:

We learn a lesson almost every time we interact, whether it’s on the Inspire site, whether it’s through the Survivor to Survivor, whether it’s in person, whether it’s with what you and I are doing today, or whether it is a Zoom meeting that we’re listening to and experts talking. I think the big thing that we learn is that we have to adapt to whatever our present is, and we need to meet each other where we are. Many times on the Inspire site, it’s really difficult to meet that person where they are because of the lack of information. But in an in person meeting, you can ask just enough questions to get a really good idea of where they are. That’s another one of the beauties of the in person meeting.

Karen Godfrey:

You and I have learned that we’re all in this together and that we’re better together. Facing our challenges is the only choice we have. We have to participate in our own battle. Nobody can do it for us. When it comes to offering support and advocacy, who do we think is going to do it if we don’t? The WELL Community out there is not interested in a disease until they have it, or it comes to their front door through family or friends. It really falls on us. John and Diane were perfect examples of it. They saw the need and they saw that there was nobody out there. Basically that’s what happens in our local community. The need is great, so who’s out there? Who’s willing? Who can commit?

Rick Bangs:

Here’s a controversial question, which is better, an online support group, one-on-one support, or an in person support group?

Karen Godfrey:

They’ve all got their place. I don’t think there is a witch is better. The online is 24/7. Enrollment, like you said, is worldwide, in that there are so many different faces of bladder cancer. You will more than likely see it on the BCAN Inspire site than you will in a local support group, basically because of the numbers of people that are out there and the types of tumors that they have. I’m a real proponent for all of them. I’m out there on the Inspire site. I’m reading on a daily basis. I’m out there when it comes to the local support, and I’m searching every day online for information. I get daily reminders from UroToday. I’ve got a wonderful friend in the DC area who at one time attended our local support groups, and he’s become a fantastic friend.

Karen Godfrey:

I’m not sure that you have met him, but his name is Bart and he is a voracious researcher. Most of us in our group got used to his ability to hone in on what was out there. He would send us emails. Those of us that want Bart’s emails, many times of the morning, you’ll get four or five emails from him. He’s already been on PubMed. He’s been on UroToday, and he’s doing the important things. It’s kind of like I’m getting my little synopsis early on in the morning. I don’t have to search. He’s already done it. He’s been a fantastic support for us.

Rick Bangs:

Wonderful. We should all have a Bart.

Karen Godfrey:

Yes, we should.

Rick Bangs:

Karen, I really want to thank you for your time today. You’ve given us this quick introduction into life with a Indiana pouch and some great insights into the inner workings of the BCAN Inspire community of which are such an important part and a glimpse as to why online and in person support groups are so critical. I want to thank you for all you do for us. Again, congratulations on your Beacon of Hope Award. Now, if people wanted to get in touch with you, could you share your Inspire name so people can find and friend you?

Karen Godfrey:

Yes. My name is Karego. It’s a combination of my name, Karen Godfrey, but it’s also to remind you that care is what it’s all about. Karego is my screen name. I can give you my email address so everyone can have that. It is KGOD@comcast.net. KGOD@comcast.net. I really don’t use Twitter. I’m not on Facebook. I use email and I use telephone. I’m available, but I prefer if someone wants to reach out to me that they send me a quick email and we’ll set it up from there.

Rick Bangs:

Excellent. All right. I just want to be clear that on Inspire, because Karen starts with a K, Karego starts with a K. It’s K-A-R-E-G-O.

Karen Godfrey:

That’s right. Rick, I can’t let you go until I thank you for the ability to sit here today and talk with you and renew our friendship. I just wish it was in person so I can see your eyes. But I have to tell you that you are the epitome of what I’m hoping everyone would like to emulate. It’s not just me receiving that award from BCAN and the peers out there, but you’re one of those that deserve it also. You’ve been almost from day one a searcher and a helper and an aide. The advocacy that you’ve done through your work with SWAG, and what you’re doing with the podcast cannot be overemphasized.

Karen Godfrey:

I want to sing your praises today, not just the fact that you and I are being able to talk, but what you have done since your diagnosis and your surgery and you’re thriving like I’m thriving is helping the whole bladder cancer community. Thank you. Thank you. Thank you.

Rick Bangs:

Oh, you’re too kind. Thank you for saying that. That’s very nice. That’s all the time we have today for part three of my conversation with Karen Godfrey, a BCAN bladder cancer patient advocate and the winner of the 2022 Beacon of Hope Award. In case you missed parts one or two, 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. If you’d like more information about bladder cancer, you can contact the Bladder Cancer Advocacy Network at 1-888-901-2226. That’s all the time we have today. Thank you for listening and we’ll be back soon with another interesting episode of Bladder Cancer Matters. Thanks so much again, Karen.

Karen Godfrey:

Thank you.

Voice over:

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, advance 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.