Transcript of Raw, Real, and Relevant: A Conversation with Shannon Murphy

August 22, 2023

Listen to the podcast:

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:

Hi, I’m Rick Bangs, the host of Bladder Cancer Matters, a podcast for, by, and about the bladder cancer community. I’m also a survivor of muscle invasive bladder cancer, the proud owner of a 2006 model year neobladder, and a patient advocate supporting cancer research at the Bladder Cancer Advocacy Network, or as many call it, BCAN, producers of this podcast. I am pleased to welcome today’s guest, Shannon Murphy. Shannon is vice president of recruiting for Paragon Legal, which specializes in the placement of attorneys on in-house legal teams. She was diagnosed two years ago with bladder cancer, and she lives in my home state of Connecticut. She’s getting married in March, so first, Shannon, congratulations on your engagement and thanks for joining our podcast.

Shannon Murphy:

Thank you and thank you. Thanks for having me.

Rick Bangs:

It’s our pleasure. So I want to start by setting the stage because yours is a little bit of an unusual circumstance. So you were 35, you’re female, and those are not typical bladder cancer patients. So how did your diagnosis happen, and how convoluted was your process, and did you have any symptoms?

Shannon Murphy:

Yeah, so I had symptoms probably for about six months before I actually got my formal diagnosis, and my symptoms were very similar to what other women have described. So it felt like a very bad and persistent UTI. I had burning while urination, a very strong sense of urgency that often didn’t actually result from me expelling anything. I did not have hematuria, so I did not have blood in my urine, which is a bit unusual, but I did have that strong sense of urgency fairly constantly, and the pain, I would say, got progressively worse as time went on. So it took me a couple months to get the diagnosis. I was on antibiotics a number of times for a UTI I did not have. I know you’ve heard this song and dance before, but I think it bears repeating because we need to catch it earlier.

Rick Bangs:

Absolutely, absolutely. So what about risk factors? Did you have any risk factors?

Shannon Murphy:

I did not have any. I’m not a smoker. I was never really exposed to any significant amount of secondary or secondhand smoke. They asked me about the dyes and the chemicals, none of that, and then I did also have a genetic workup, which revealed nothing of note, so no good explanation thus far.

Rick Bangs:

Okay, so it’s a mystery.

Shannon Murphy:

A mystery indeed.

Rick Bangs:

Yeah. All right, so what was your experience with the diagnostics themselves, your cystoscopy, your TURBT? How did that go?

Shannon Murphy:

I had a pretty positive experience, to be honest. By the time we were up to the sort of physical diagnostics beyond just the lab workups, I was happy, because I wanted answers, and I felt like we were getting closer. I’ve been in the care of two urologists, both of whom were amazing for similar reasons. They were very clear about what would be happening during the procedure, kind of what they were looking for, what they expected to find, what they might find, and for both my cystoscopies and TURBTs I was asleep. I was under anesthesia, so I felt nothing. I got a good nap and woke up 30, 40 minutes later. And for me, I was really tired the day of afterwards, mostly I think an effect of the anesthesia. I did have some blood in the urine, which is totally normal and minimal pain, so really the diagnostics were clear, effective, and relatively painless for me. I do get BCG treatments. That’s been a little bit more challenging, but all things considered, this part has not been the hardest.

Rick Bangs:

Okay. So we’re going to come back to the BCG, but we’re at kind of the diagnostic stage. So you would have this question about sharing with your colleagues, right? Because still working.

Shannon Murphy:

Yeah.

Rick Bangs:

You’re relatively young in your career. All right? It adds an extra dimension to the challenges of deciding who you’re going to tell and when you’re going to tell them. So can you talk about how you grappled with this question and what you ultimately decided?

Shannon Murphy:

Yeah, for sure. So some context, I was only three months into a new job, and I got that job during COVID, so I had actually never met any of my current colleagues in real life when this happened. And so that in itself was a little nerve wracking. I was brand new on their insurance policy.

Rick Bangs:

Oh, my.

Shannon Murphy:

And I work a corporate job. I’m fully remote, but I’m on the phone. I’m on video quite a bit. Truthfully, before my own diagnosis, I think I think what a lot of people think, which is you get cancer, and you have to quit your job, and then you die, or you find a new job, and your career is severely impacted. So I really wasn’t sure how to navigate wanting to work, being able to work, but also like you said, who do you tell? How do you tell them? When do you tell them? And there’s a lot of different opinions out there on this.

So for me, my manager was aware that something was up. I had actually had to cancel my appearance at our first board meeting because it was the only day my urologist could do a biopsy, and at that point we were fairly certain something was going wrong.

Rick Bangs:

Oh, no.

Shannon Murphy:

So I had clued her in at that point. I also, just to be totally candid, the urgency was becoming apparent in meetings both in person and over video. I would have to excuse myself often to use the restroom. So there were definitely signs to some of my colleagues that maybe I was a little bit unwell, but I don’t think anybody really thought it was going to end up in cancer. You asked about grappling with it. Yeah, I mean, on the one hand for me, I felt like I don’t really have a lot of information. What exactly am I going to share with these folks? What are they going to make of it? I didn’t want to be babied or perceived as being weak or in need of a lot, because my plan was to work. My doctors had said that clearly there would be scheduling impacts, but there was no reason not to work. But then on the other hand, that first month is exhausting with the amount of phone calls, appointments, meetings, research.

Rick Bangs:

Oh, yeah.

Shannon Murphy:

It feels never ending. And the reality is there was no way for me to have that not impact my job. So my decision to tell my manager, I mean, I feel very fortunate, because I obviously felt I was in a safe place, but it was selfish. I wanted to relieve myself of having to keep a secret. I wanted to relieve myself of having to keep track of who I told, who I didn’t tell, what I told them, where they thought I was, where they thought I wasn’t. So for me that it was really one less thing to worry about once I put it out there.

Rick Bangs:

Yeah, I can relate, because it was… I mean, for me it was like I got to remember. If I don’t tell everyone, I’ve got to remember who did I tell, and then they might say something innocently, and I might interpret that they know, but I didn’t tell them. It was just so much cleaner to just be upfront, but at the same time wanted to wait until I was a little bit more definitive as to what was going to happen before I started letting people know.

Shannon Murphy:

I think that’s really good advice because same for me. I wanted to wait until I had something to say beyond just, “I have cancer.” I wanted to be able to say, “And here’s what it’s going to look like, and here’s what I may need. Here’s my timeline.” I think that was helpful to them. It was also helpful to me, and with hindsight, maybe you felt this way too, maybe not, but I think it’s important to speak up about it at work, because I think it’s important to show people that your life can go on, and it can go on in very normal ways, and the narrative doesn’t have to be the one I described at the beginning of this question. You can work with cancer and find a way for that to become normal for you.

Rick Bangs:

Right. Right. And you don’t all just die. I mean, that’s-

Shannon Murphy:

You don’t all just die. I in fact have other colleagues that shared their news with me once I shared with them, so that in itself is another motivator.

Rick Bangs:

Okay. So now, if you were giving advice to managers how to navigate a direct report’s cancer diagnosis, what would you tell them?

Shannon Murphy:

The First is to just listen. Don’t presume that you know about cancer because maybe you’ve seen someone else go through it. I think listen to what they’re sharing, listen to what they’re asking for, and also ask if they’re open to questions. The more your manager knows, very likely the better they can support you, and so if the person sharing the news is open to questions and is open to a dialogue, then take them up on that, because it’ll open doors to how you can support them, not just in the immediate conversation, but later on. I think another thing is that you touched on is communication to others. So one thing that I found really helpful and when someone shared this news with me, this was something that I think was helpful for them as well, is offer to get the word out in a way that they’re comfortable with.

So obviously you want to make sure that you as the manager know what your colleague is comfortable with their other colleagues knowing, but in the beginning, you kind of get sick of telling your story so many times, and maybe you’re not in the mood to talk about it or think about it, but you’ve got to kind of check that box. So I think if the manager can be willing to kind of help get the word out, whether it’s to HR or to other folks that you would like to know, but maybe you don’t want to engage with in a direct conversation, I think that’s extraordinarily helpful. And then the other piece is letting the person who has cancer drive the process to the extent it’s feasible from a business perspective.

So if they want to work, figure out how to make that happen. If they don’t want to work, don’t bother them while they’re working or while they’ve asked not to work, but don’t make assumptions that just because somebody is sick means they don’t want to work or that they can only work A, B, C time or X, Y, Z schedule. For many people, myself included, work was huge. It was a distraction. It gave me a big sense of purpose. It was not related to cancer at all, which was so welcome in the beginning. And if someone told me not to work, that would’ve been crushing, because I was really looking for that normalcy. So I think if the person who’s sharing their news with you is open to working, try your best to accommodate that. Obviously, you have to make sure business gets handled, but if you can do that, that’s great.

And then lastly, send gifts I think to the extent that that’s possible or there’s budget. It goes a long way. Anytime I mention gifts in the cancer realm though, I do feel like I want to say, “Not everyone loves cancer branded products.” So my experience would be to send things that are cozy, that show care, but maybe don’t drive home that the person is sick or fighting cancer. So gifts I’ve received that were great were crossword puzzle books, blankets, food for me, for my fiance, for our home. All of those were great ideas, and I think if your company can do that or you can do that for your direct report, that’s fantastic.

Rick Bangs:

Yeah, I think this is great advice. Okay, so now we’ve talked about what to do as a manager. What shouldn’t the manager do?

Shannon Murphy:

Yeah, I said this before, but don’t make assumptions, and I think a lot of what I would put in the shouldn’t applies to managers, but also everybody else out in the world too. So don’t make assumptions about just because someone may look a certain way or “look sick” or not want to be on video doesn’t mean they can’t do their work or don’t want to do their work. And again, ask for clarity. I think also don’t expect that you’re going to get it right 100% of the time. No one who’s talking to someone with cancer is saying the right thing. It’s just not possible. But don’t let that get in the way, right? Especially with work. You don’t have to ask questions. You can send a simple note saying, “Hey, I know you have an appointment today. Just letting you know we’re thinking of you,” or, “Rooting for you,” or I’ve even received messages that are just the heart emoji, which is really helpful, and kind, and feels like a heck of a lot more than nothing, but I know maybe the person on the other end wasn’t exactly sure what to say.

So go for it in that sense, but don’t think you’re going to get it right every time. And then this goes without saying, but obviously if someone has asked for privacy, or discretion, or is off, make sure you’re holding that boundary, and that you’re ensuring that your other colleagues are doing the same.

Rick Bangs:

Yeah. Yeah, and I always as the receiver of some of this messaging, I always try to… I mean, because you’re right. People don’t get it right 100% of the time. So I always like to think about, “Well, was there intention behind that?”

Shannon Murphy:

Totally.

Rick Bangs:

Right? I mean, that to me is the critical thing. What was the intention there? And I think people are generally very good and have great intentions.

Shannon Murphy:

For sure. And I think it takes a little bit of bravery to message someone.

Rick Bangs:

Oh, yeah.

Shannon Murphy:

Not just with cancer, but divorce or any other kind of illness, because there’s nothing you’re going to say that’s going to fix the problem. So I think many of us, I certainly feel this way myself at times, is saying anything worth it when it’s not going to undo this horrible thing that’s happened? But for me, I’m always happy to hear it from people. I may not respond right away or want to respond right away, but to your point, if the intention is there, and it doesn’t have to be… I don’t expect anybody to keep track of how many appointments I’ve been to or anything like that. Really a little goes a long way.

Rick Bangs:

Right. Right. Okay. So let’s flip it around and let’s talk about colleagues. So you’ve got work colleagues. How can they be supporting a cancer survivor? What should they do?

Shannon Murphy:

I would say all of the same stuff, but maybe where colleagues kind of come into play a little bit more is just my experience was I didn’t want to be babied. I didn’t want to be coddled. So yes, I appreciated grace, but I also didn’t… I still wanted to be made aware if I did something incorrect, or I did something, I missed a deadline, or something like that. For me, when you get cancer, and I think a lot of people talk about this, in the beginning, you sort of feel like there’s never going to be a version of you without it, and work is a sense of purpose and accomplishment for so many of us, and I didn’t want that to go away. So for me, I would not have found it helpful to let everything slide, because I still very much felt capable of doing my job and wanted to spend my time that way.

So just clear communication, again, ask questions, don’t try to get it right, but do try to engage. And I do have to say while I have this chance that I’ve learned all of this because I had an incredibly supportive team who with me has really shown me how to do this well, and who have been amazingly supportive and showed up in all of these ways for me. So it’s a little trial by error. This is what works for me. This is what works in my line of business. Obviously, it’s going to be tailored depending on what you do, and who you’ve got alongside you.

Rick Bangs:

Yeah, I agree. I agree, and I too was lucky. I had supportive managers, supportive leadership, and supportive team.

Shannon Murphy:

I love that. Love that.

Rick Bangs:

All right, so let’s ask the follow-up question, which is what shouldn’t colleagues do?

Shannon Murphy:

Yeah. Again, not specific to colleagues, but sometimes it happens. I think you and I have talked about this. I personally almost never find it helpful for someone with very surface level or cursory understanding of my particular disease to relate it to someone else they know with cancer. So I think sometimes people like to share good endings. Surprisingly, sometimes people end up sharing bad endings. You’ll get the, “Oh, my aunt had that.” “How’s your aunt doing?” “Oh, she died.” And that’s sort of like a real head scratcher, but everybody is unique, so there’s so many different kinds of cancer, and I think for every person who has cancer, there’s a set of preferences on how they want to hear about it, how they want to talk about it. And even over my two years, my preferences on those things have changed.

You’re not going to get it right 100% of the time, but I do find that most people I talk to who have cancer don’t find it helpful when somebody relates your cancer or they hear about your cancer, and then they start talking about their aunt with cancer, because they’re not the same thing. It can come off as minimizing. It can also come off as catastrophizing, and it just really leaves the person who has cancer sort of feeling like, “What do I say to that?” For me, and particularly with colleagues who have varying levels of relationships with you or with whom you have shared various levels of your private information or your personal life, I think presence is the main thing to do, so just be there, show up. A lot of times people don’t need advice or there is no advice to give. They don’t always want to be pumped up. They’re not always in fight mode, but just, again, sort of saying like, “Hey, I’ve got you. Hey, I’ll hear you out. I’ll listen,” really is just as powerful, if not more.

Rick Bangs:

Right. All right, so you mentioned that you’d had BCG, so I want to hear about your treatments to date. How’s it gone? And I’m particularly interested because of your unique circumstances or relatively unique. So you’re a young woman diagnosed with and treated for bladder cancer, so what stands out for you in general and then through that lens?

Shannon Murphy:

Yeah. So when I was told about BCG, and that would be my course of treatment, they did mention catheterization, and I knew what a catheter was insofar as it helped you pee if you could not pee yourself. That was the extent of my understanding. So yes, learned a lot about that quite quickly. Being catheterized, it’s uncomfortable. My experience, again, I’m a woman, obviously, very different. The length of our urethra is much shorter than male patients, but it’s uncomfy. It’s quick. It sort of feels like a pinch while it’s going in. BCG, they basically take what looks like a very large needle without a point at the end of it, and they push the medicine through the catheter into your bladder. And for me, I never feel that. It’s very easy. I see them do it, but there’s no discomfort, and I leave. You’ve talked about on your podcast before, the standard protocol is to keep it in your bladder for two hours, and I don’t have any symptoms at that time. For me, where BCG gets a little tricky is afterwards.

So typically, I do have moderate to severe burning on urination once I’m expelling the medicine as well as afterwards for a few days. I do sometimes have, again, the sense of urgency, and usually the first day or two, I just want to nap. I’m a heavy napper to begin with, but I definitely feel the sense of fatigue more so after BCG, and I’m about 16 treatments in, and I’ve got I think another nine to go. I’m on a three year maintenance plan for my cancer. Bladder cancer, the faster you can get comfortable not having your pants on in front of people, the better off you probably are. My experience has been that, obviously, cystoscopies, BCGs, all of that requires you to be undressed from the waist down. If you’re uncomfortable, that’s totally normal. I think talk to your nurse about it. They’re usually… Mine will have great conversations with me or chit-chat with me. That all helps, and I would say don’t be afraid to ask questions about your body.

A lot of times, especially in the beginning, you’re hearing all the technical terms for all these parts we have lots of colloquial terms for, and you’re trying to figure out what’s what, and I think it’s okay to ask like, “Well, what part is that specifically, and what’s that supposed to look like, and what’s it supposed to feel like?” Because you’re just trying to figure out what “normal” is, and they can help you with that. And I think that’s something that many people are maybe afraid to do or a little shy about, but in my experience, it’s helped me tremendously. It’s also helped me get what I need in the future because I can talk about it the same way the nurses can, so I can identify where my pain is, I can identify if something looks or feels unusual to me, but there’s no secret sauce to feeling comfortable half naked in a room full of people.

Rick Bangs:

Yeah. Yeah, and it’s not like other doctors where you’re not sure whether or not the pants are coming off and the underwear.

Shannon Murphy:

Oh, you’re sure. You’re sure. You’re sure. Yeah.

Rick Bangs:

Right. It’s like they just have to move, like flick their finger down, and you know that that’s it. The pants and the underwear are going.

Shannon Murphy:

Yeah, and there’s often more than one person in the room. Right?

Rick Bangs:

Oh, yeah.

Shannon Murphy:

I mean for cystoscopy there’s usually my doctor, a nurse, a tech, me, my partner. Yeah, it’s something.

Rick Bangs:

Yeah. Yeah, exactly. Exactly. All right, let’s talk about quality of life after treatment. So if you’re advising another young female with bladder cancer and your specific kind of disease context, what would you tell her?

Shannon Murphy:

Try adult diapers. My mom suggested it to me. At first, I sort of scoffed at it, but I have to say if you are having any sense of urgency, if you are feeling like you have to go all the time, and often when you feel that way, you don’t actually go. I mean, maybe a tiny little bit, but you’re not constantly urinating. So for me, that was huge. It enabled me to go out and walk around, because before my diagnosis, it was getting to the point where I felt like I always had to know where the restroom was. I didn’t want to go anywhere. If I didn’t know where the restroom was, I was afraid of having an accident of some kind.

Rick Bangs:

Oh, yeah.

Shannon Murphy:

So I think if you can get comfy with that, try it. I usually bounce back pretty quick after BCG, usually a day or two, and I feel good again, and then you kind of right when you start feeling good is when you go for the next one, but I mean, I recommend keeping your life as stable as you can during that time. I tend to go shopping on the way home from BCG because I’ve got to kill two hours. I don’t want to be thinking about not going to the bathroom, because as soon as you try thinking about not going, what happens?

Rick Bangs:

[inaudible].

Shannon Murphy:

You just think about having to go.

Rick Bangs:

[inaudible].

Shannon Murphy:

Yeah, get an ice cream, go to Home Goods. That’s what my mom and I would do, and my partner and I sit in traffic for two hours sometimes. So all of that helps though, and I would recommend having a plan before you go, like what’s that thing I’m going to do on the way home, or what’s that thing I’m going to do before the pain sets in that can make this a little bit more manageable.

Rick Bangs:

Ah, great advice. Okay, so with many bladder cancer patients this kind of can be a universal truth. Intimacy with a partner is going to be an important topic. So what would you tell other young females who are undergoing treatment for bladder cancer, and what would you tell their partners?

Shannon Murphy:

Yeah. I mean, I just talked about adult diapers, right? Most 30 somethings, most people of all ages are not wearing adult diapers. So you could joke about it, but you kind of obviously know things are changing, right? It doesn’t make you feel great about your body necessarily. It’s not super sexy, and I think what was helpful for me to understand is that things are going to change, obviously. There are small tubes being placed in the holes in and around your vaginal area. How could it not? But my doctors were pretty upfront about that. BCG has obviously its own precautionary protocols for sexual intimacy, which I know you’ve covered here before. So obviously you want to heed all of that advice, but I think talking about it with your partner really helps.

For us, the biggest struggle has been that especially if your partner goes with you to your appointments, they see you in this very sterile medical setting. You have to steel yourself against, like we talked about, there’s people there. They’re touching you. For most people, that’s not happening for them, and you have to kind of put your mind outside, get outside your mind a little bit, and just accept it as medical as they do this 5,000 times a week. You are just one of many, many people they are poking around and touching, but for you and your partner, that’s not the case. It’s very personal. And for me, sometimes I’m sore afterwards, or I feel like I clench all the time, or I’m anxious all the time, because it’s like if you keep getting punched in your arm, and somebody winds up a foot from your arm, what do you think your arm is going to do? It’s going to get ready to steel against that. So how does that not happen to the rest of your body? Of course it does.

And I think for your partner, it’s sort of like they see you in a fairly distressing situation. They feel for you. They don’t want to do anything that’s going to make that worse, and they also have had to see you in a very medical environment and sterilized environment, and that is very different than what they’re used to before. So talk about it. Whatever it is, it’s not permanent. There’s always conversations you can have. There’s always things you can do. At Sloan Kettering where I’m treated, there’s so many resources if you are having issues either talking about it, or the way you feel, or you’re noticing changes in your body. There are tons of resources out there. Unfortunately, you do feel like you have to ask for them a little bit more, but they are there.

Rick Bangs:

Right. Right. So I want you to reflect on your entire bladder cancer experience up through today. So how did you manage the stress and emotions for yourself, and same question for your family?

Shannon Murphy:

Before bladder cancer, I think I learned that there’s only one way past an emotion, and that’s through it. You can’t go around it. My therapist, who I’ve worked with for a number of years, has always talked to me about thinking about feelings as sort of like a wave, and you see it, and you know you’re going to get wiped out, and the feelings are going to come up, and they’re going to get really big, and it’s going to crescendo, and then it will subside. It will release you, and you will get tipsy-topsy turned around in the process, but you will come out. And that was really helpful with dealing with this was like if I felt sad, I felt sad. If I felt happy, I let myself feel happy, but just try to be kind with yourself and have some grace for yourself.

In terms of family and friends, it’s really hard to give this news to people that care about you. Depending on how close they are, they likely have known something is up and are sort of waiting for an update, and it’s sad and scary for them too. And in many ways I think it’s harder for them in some sense because there’s nothing they can do. When you’re the patient, there’s a plan that you are executing, and you are the star of it. It’s hard to be somebody who’s just watching on the sidelines, right? But I think whatever feelings your friends, or your family, or your colleagues have, you have to, have to, have to remember they’re not yours to manage or shoulder. So there’s no wrong feeling. No one is too upset or too not upset. It’s all valid for them, but it’s not yours to own. So that can be tough, especially if you are the one who has a lot of close people, and you are quite caring, and you empathize.

It’s tough, but you can’t be having a great day and then a friend is having a tough time with the news that day. If you get too in the weeds with them, it’ll crush your great day too. And that’s not healthy. I mean, mindset is a big piece of all of this, and you’ve got to be able to keep it as much in check as you can. Something that is helpful for me that I learned is just being very clear with your communication. So a couple of examples is if people call you responding with a text and saying, “Hey, I’m not up for talking on the phone today. I’m open to texting,” or, “I just don’t feel like talking today. I appreciate you checking in. I’ll let you know when I do feel like connecting.” You’re going to get a lot of recommendations from people when you get cancer. Everybody has got tricks, tips, books, potion that all mysteriously did not work for the aunt that just summarily died.

Rick Bangs:

Exactly. Exactly.

Shannon Murphy:

So take all of that with a grain of salt. I should say, and I should have said this at the beginning, this is all me, and what’s worked for me, and how I have decided to manage myself. Many people find peace, help in all kinds of different things that I don’t. So this is not by any means a blanket. These are not blanket statements, but I love to read. People are always sending me book recommendations. I’ve had to be very clear when I’m interested in books about cancer, or about managing cancer, or about diets that cure cancer, and when I’m not, and I think also encouraging your friends and family to keep you distracted.

You don’t want to talk about yourself all the time. You still want to hear about them. You still want to hear about the mundane things. I did not want to be the center of every conversation. I still wanted to know what was going on with my siblings. I still want to know how my partner’s day is going, what my parents are up to, how my colleagues’ projects are going. All of that is still relevant, still the same me. So encouraging them to talk about themselves is actually also, in my experience, quite helpful so long as you trust that they know when to say when.

Rick Bangs:

Yeah, yeah. I mean, you want some normalcy.

Shannon Murphy:

Yeah, you do want normalcy, and I think people are afraid that if they don’t bring up the cancer first thing, you might think they forgot you, or forgot that you were dealing with this, or that you’re being insensitive, but I read a blog of a young woman dealing with cancer, and she was like, “I still want to talk about celebrity gossip, because that’s what I liked before. It doesn’t mean I don’t like it now.” So everything you liked doing before, as long as it’s healthy, is totally fair game to keep doing and should be encouraged by the people around you.

Rick Bangs:

Right, right. So what were some of the hardest parts for you, and how did you navigate through them?

Shannon Murphy:

The beginning. For me, it was in between knowing something was really wrong and then having a plan, which was probably a month or so. There’s, we talked about this, so many calls, so many appointments. You’re Googling everything. You’re asking 9 million questions to your doctor. You’re trying to keep it all straight in a notebook. It’s very time-consuming, and I felt like at times I’m never going to get out from under this, like this is always going to be the first thing I think about. This is always going to be the last thing I think about at the end of the day. This is always going to be a huge thing for me. I’m never not going to have this. And to some extent that’s true. You can’t unring the bell, but it gets better.

There’s plenty of days I wake up thinking about what I want to eat, or I go to sleep thinking about what I wish I would’ve eaten. So it’s that changes, and you do find a normal that in some ways can be better than what you had before, in some ways won’t be better than what you had before, but the all consuming, “This is who I am. This is always what I’m going to be talking about. I am always going to be on hold with insurance,” for me, that’s not been the case. There’s still life is going to go on. This isn’t anything to do with who you are at your core, at a soul level. It’s something that you’re experiencing. It’s something that’s happened to you.

Rick Bangs:

And it’s transitory.

Shannon Murphy:

It’s totally transitory, and healthy distractions, there’s nothing wrong with that. I watched… Maybe this is another idea for a podcast for you, but it would be great to have a resource list of all the shows, movies, books that don’t include someone getting cancer and dying, because in the beginning, you really… I was not up for that. Now it bothers me less so, but you could be watching a movie and boom, plot twist, and it’s just not appealing anymore, and then other times you’re watching, and it doesn’t feel relatable to you at all. You’re like, “Oh, yeah. Okay. That’s how that story goes.” But in the beginning, I watched a lot of HGTV. I watched a lot of Food Network, very could pretty much count on them to just help me zone out, and that’s fine. There’s nothing wrong with killing time in that way, I don’t believe.

Rick Bangs:

No, absolutely not. So what would you want other people to know? And I mean, what kind of advice would you give others?

Shannon Murphy:

The advice I would give would be to be cautious about the advice you take, and you have to do what makes sense for you.

Rick Bangs:

[inaudible].

Shannon Murphy:

I am sharing my story with you because maybe there’s people out there for whom parts of it resonate, but there’s not going to be anybody out there whose story and experience is exactly the same as mine, or whose preferences are exactly the same as mine, or whose support structure is exactly the same as mine. And so what that means is that there is no one plan out there for everybody, but don’t worry so much about if what you’re thinking or feeling is normal. We talked a little bit about relieving yourself of stress. The judgment of yourself should be the first stress you work on eliminating because I’ve learned there’s no right level of sad, or scared, or angry, or happy.

You don’t have to be scared every time you have to go to the hospital. You don’t have to be happy every time you get good news. Sometimes you get news, and it feels like, “Oh, I wasn’t feeling great, and now you’re saying everything is normal. That’s weird.” You can’t judge that on your… Or you can judge it, but you should try not to and just take it one day at a time. If you just take it in tiny little pieces, you will go so, so far.

Rick Bangs:

Yeah, this is such great advice. So let’s talk about BCAN. When did you discover BCAN, and how did it help you as a patient?

Shannon Murphy:

So I was diagnosed March 14. Excuse me, May 14th, and I did exactly what you’re told not to do for the entirety of May 15th, which was go down the rabbit hole of the internet, and thankfully though, that rabbit hole did lead me pretty quickly to BCAN, because I was looking for resources. I knew I was a bit of an anomaly. I wanted to learn more about all the terminology. I wanted to know what to expect. Of course, you’re Googling all kinds of statistics, and BCAN was so helpful to me because the information was digestible, and it was clear. It was clearly factual, but had sort of an upbeat spin to it. It seemed like a community. I looked at the advisors. I looked at the trustees. I looked at the board, because obviously with the internet you can find evidence to prove or disprove anything you want, and so I wanted to make sure that I was looking at resources from people who really knew what they were talking about.

And so I looked at all of that, and I felt like this is a great website. It also was tremendously helpful to share with other people, because, again, to the point about maybe you need to update this person in your life, but you’re just not feeling like doing it right now, direct them to BCAN. Send them a link, send them an infographic, send them one of the videos that explains it so you don’t have to. That in itself has been huge, and then obviously the fact that there’s research and advocacy is awesome. So that’s kind of how I found it and the role it played for me.

Rick Bangs:

Okay. So now I want to talk a little bit about online groups. So BCAN has an online group. It’s called Inspired. So what advice would you give somebody who’s just diagnosed and might be hesitant to join an online group like Inspire or some other group?

Shannon Murphy:

Yeah, I have struggled a bit with online groups, and I would say proceed with caution because there are many, many, many out there, and so if you are going to engage with a group, I would suggest doing it in a moderated setting like BCAN where it’s not just someone on Reddit or Quora where you don’t know who you’re engaging with, and you don’t really know if anyone is even verifying what they’re saying.

Rick Bangs:

Exactly.

Shannon Murphy:

So if you do want to do it, I think go through either your hospital, or BCAN, or a facility that is invested in providing good information and a supportive community. For me, because there were not many young women out there, I found groups hard because many of them were populations that I couldn’t relate to. And I also, and this is very personal to me, not everyone feels this way, had a hard time pulling my anxiety back if I would read too many really negative things about BCG or TURBT, or I saw someone who had a bad experience at the hospital I was being treated at, or something like that. I struggled with keeping context on that. So I think you just have to go in realizing that do your research, figure out who’s moderating it, who’s running it, make sure the intentions are there. Do it when you’re in the headspace to be able to filter.

If you are in the early stages where you are just ravenously consuming every single piece of information that has the word, “Bladder cancer,” on it, it probably will overwhelm you. That said, I think it can be really great for people once they’re in a place where they’ve found their crew, they’ve found their community. Just realize that everybody’s experience is unique. So what somebody says have happened to them isn’t necessarily going to happen to you, and you may have something totally different happen to you after you had the exact same procedure. So context, but don’t take any of it as fact or any sort of sure bet on what’s going to happen to you.

Rick Bangs:

Yeah, verify, verify, verify.

Shannon Murphy:

Verify. Trust, but verify.

Rick Bangs:

Yeah. Okay. So we’re bringing this to a close. Do you have any final thoughts you want to share?

Shannon Murphy:

Just thank you. I mean, thank you to you for having me. Thank you to BCAN for the work they do, to people who give their time to this organization, to anyone who shared their story, because I did find stories that helped me. I did find people who were motivating, and that’s only possible when people speak up. So thank you, thank you, thank you, and of course, my family, and friends, and all of those folks who are in that group for me too.

Rick Bangs:

Yeah. Where would we be without them?

Shannon Murphy:

Seriously.

Rick Bangs:

Yeah. So, Shannon, I want to thank you for sharing your bladder cancer experience as a young woman who is also working, and how that differed from the typical experience. If you’d more information on bladder cancer, please visit the BCAN website, www.BCAN.org. In case people wanted to get in touch with you, could you share some mechanism by which they could do that?

Shannon Murphy:

Sure. So my Instagram is private, but you can find me and message me on there. It’s ShannonKevin_, so S-H-A-N-N-O-N-K-E-V-I-N_, and then I am also on LinkedIn. I work at Paragon Legal, and my LinkedIn account is I think the address is linkedin.com/shannon-k-murphy.

Rick Bangs:

Excellent. Just a reminder, 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. Please be sure to like, comment, and subscribe to this podcast so we have your feedback. Thank you for listening, and we’ll be back soon with another interesting episode of Bladder Cancer Matters. Thanks again, Shannon.

Shannon Murphy:

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, 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.