Finding Purpose And Sharing Your Story After Cancer, with Rachael Kearney

ASCO: You’re listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the voice of the world's oncology professionals. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guests’ statements on this podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so data described here may change as research progresses. In this podcast, esophageal cancer survivor Rachael Kearney shares her story with Dr. Frank Penedo, Associate Director of Cancer Survivorship & Behavioral Translational Sciences and the Director of the Cancer Survivorship Program at the University of Miami Sylvester Comprehensive Cancer Center, and an Advisory Panelist on the Cancer.Net Editorial Board. They discuss her podcast, Call On Courage, which features conversations connected to courage, starting over, and overcoming. They also discuss the value in sharing your story, and tips for people with cancer and survivors. You can view disclosures for Dr. Penedo and Ms. Kearney at Cancer.Net. Dr. Frank Penedo: Hello, I am Frank Penedo. I am the associate director of cancer survivorship and behavioral translational sciences and also the director of cancer survivorship and supportive care programs at the University of Miami Sylvester Comprehensive Cancer Center. I'm also an advisory panelist on the Cancer.Net Editorial Board. Today, it is my pleasure to welcome and talk with Rachael Kearney. Rachael is an esophageal cancer survivor who lives in Manchester, England. After she received her cancer diagnosis, Rachael started a podcast called Call On Courage, which features conversations connected to courage, starting over, and overcoming in general. Rachael, thank you so much for talking with us today. Rachael Kearney: Thanks for having me, Frank. I'm excited to get into this conversation. Dr. Frank Penedo: Before we begin, Rachael, I should mention that we have no relationship to disclose related to this podcast today. Rachael, can you please tell us a little bit about your experience being diagnosed with cancer and your journey thereafter and what was it like? Rachael Kearney: Yeah, so this is kind of coming into about 15 months ago. Out of nowhere, I had sort of severe acid reflux. And I was due to meet up with some girlfriends in Manchester, and I was just really struggling to eat my breakfast. It was just bizarre because I've not had those type of symptoms before. And essentially, what happened very quickly, within a 3-week period, this acid reflux increased, and it got worse. And it got to the point where I couldn't tolerate water. So I knew something was seriously up. But there was a waiting period before I got admitted to hospital, before I could have an endoscopy, which is obviously what I knew was going to get to the bottom of things to find out what was going on. And, yeah, it was just very scary in terms of not being able to tolerate normal food. But essentially, when I did get admitted, the endoscopy appointment came a lot quicker within a matter of 2 days, and then the actual diagnosis of esophagus cancer was within 24 hours after that. Obviously, it was just a massive shock because there wasn't a history of this in my family. And at the time, I was only 42. I'm 43 now. And it just felt very bizarre because I hadn't heard of anyone else that had esophagus cancer in my age group or friendship circles or whatever. Dr. Frank Penedo: Yeah, you mentioned, Rachael, a couple of words in there that stand out. It's just a shock of that diagnosis and, of course, the fear that comes along with that. It sounds like you were able to get proper attention pretty quickly, which is obviously very important when dealing with a cancer diagnosis. But can you tell us a little bit about how you dealt with that initial shock and fear? Rachael Kearney: So the weird thing was I was in shock, but I wasn't scared. And I don't know why, logically. I don't know why I wasn't struggling with a lot of anxiety. I don't know. There was just this inner sense, that things were going to get treated quite quickly. And, I mean, I had 2 surgeons because-- I don't know what the procedure is like in other countries, but in the UK, the treatment plan was a sandwich of chemotherapy and esophagectomy, and then chemotherapy at the end of that. The esophagectomy is the critical bit because the surgery essentially-- mine was actually an advanced tumor, so it had been there a while. So I knew surgery was the best course of action because this thing had been growing inside of me. And it was like-- it's a drastic surgery, the esophagectomy, because they're obviously removing a chunk of your esophagus, and you're also having essentially a gastric band. I was massively into fitness before I had cancer, so it almost sounds slightly annoying now, but the challenge now is more to focus on getting the calories in. And maintaining good weight is the focus. But that said, I think it was just a lot of-- I was having to process a lot of information because the treatment was coming at me quite quickly. And there was things about it lifestyle-wise that-- because prior to chemotherapy, I was on a feeding tube to get my nutrition. And at the time, I was more concerned that I wouldn't be able to eat in the normal way, that I'd maybe end up long-term on a feeding tube, which was something that was-- you've got all these questions about what your future and your lifestyle looks like post-esophagus cancer, and that was kind of in the mix. But I think one of the things that was amazing was I had a lot of community, I had a lot of support around me in Manchester. So I was really fortunate, even though there were some wards within the local hospital I was in that were COVID-restricted still in terms of visitors, they made allowance for me to be able to have visitors and stuff like that. So I was really fortunate and even had a friend that worked in the hospital that would come and see me at the end of her shifts and stuff like that. So I had a lot of people checking in when I was in hospital, so I felt very supported through that process. But the thing that's complicated is you're very unwell and you're having to take in lots of information in terms of your treatment plan. And then they can't give you guaranteed scenarios of what your lifestyle is going to look like at the end of surgery. So that's the grey area, really. Yeah. Dr. Frank Penedo: Sure, Rachael. And cancer in itself, it can be very challenging, let alone during a pandemic, when we have to adjust so many other aspects of our life. But it sounds like you had a pretty good support system, which, as we know, helps our cancer patients and survivors really manage the experience and get through. You touched a little bit upon your treatment. You mentioned it included surgery and reshaping of your esophagus and the stomach. And you touch upon the effects of surgery, which can be persistent. It can really persist well beyond that active treatment period. Can you talk a little bit more about how you've been able to cope with these side effects and changes that you've experienced? Rachael Kearney: Yeah, so I was a massive foodie before all of this, very food-orientated. Food was almost, in family and friendship circles, a love language. And Manchester's got a thriving food scene out in the city and stuff, so a lot of socializing revolved around food. And I think the great thing about the upper GI ward that I was on at the time is there's no secrets and there's no sugar coating everything. They give you probably sometimes worst-case scenarios in terms of what things might look like after surgery. But the one thing they did say is I would need to have a puree diet moving forward and that would, to all intents and purposes, be permanent as a lifestyle change. They did say I could have these particular-- they're a bit invasive, but dilatation procedures where there's a physical stretching of the esophagus-- what actually happens is if-- once you come out of the surgery and you try to eat food, what's actually happening is things sometimes get caught. So I've got to be really careful about what I eat. I'm now on basically a liquid diet. And for texture, there's certain types of crisps, or, obviously, you guys say chips, that are melty or crackers that are melty in texture. So at least I get some kind of crunch just in terms of what I'm putting into my mouth and stuff. But I'm pretty much living on blended food or soups and ice cream and yogurt and things like that and smoothies. So the diet is massively limited now in terms of what I eat. The dilatations were offered to me as a way to kind of stretch my esophagus to encourage-- it's the swallow that's the challenge. So if I had something bread-based and tried to eat that, it just gets caught and it just comes straight back up. So I live alone. So I don't try and test the boundaries of what I can eat and what I can't eat because I don't want to risk choking and things like that when I'm at home on my own. And then obviously, in public, there's so little warning if something needs to come back up. Socially, it's just a no-no. So what I have found, 2 things, are, I guess, really making my needs known. So there's a food market in Manchester I went to at the weekend. And there's this amazing Mexican vendor there. And they make things that are not on the menu for me that pureed, amazing, delicious Mexican food that-- they just know what my condition is. And I'm really clear I've had esophagus cancer, and this is the situation. And then I think the other thing that's really key for me, because when I tell people I'm never going to be able to have pizza again in my life, people look at you and feel really sad because food is such a thing that brings joy. And I was so food-orientated before all of this. But I think I have to keep remembering I was on a feeding tube for 3 and a half months and I wasn't sure if that was going to be my new normal moving forwards. And there's obviously people, even young people, with other medical conditions-- I found these people on social media who live permanently on a feeding tube. Lifestyle-wise, that is so limiting. And I just thought, "Actually, my lifestyle-- it's changed. But I'm still out, I'm still active." I used to throw around kettlebells a lot, but now I'm just doing a lot of walking. So I'm still walking a lot and getting my exercise in. It's just that my diet has gone more simplified, this liquid diet, and I'm grateful that I can taste things and still occasionally have a cocktail. And obviously, the volume of what I can tolerate because of the gastric band side of things is just less in terms of volume. So I just get fuller quickly, as well, just being mindful of that. Dr. Frank Penedo: Rachael, thank you for sharing that experience. I think we tend to undermine or underestimate what happens after treatment. We're so focused on curing the cancer and having the right level of treatment and getting the best care possible. But you have so eloquently described what experiences one can face after treatment. And these can be very challenging for anyone. Was there anything that surprised you? Were you expecting these changes or anything that popped up that said, "Oh, I wasn't thinking this was going to be my experience after being treated?" Rachael Kearney: I did surprise myself at how well, relatively speaking, I coped with the puree diet. I think I thought that was going to affect my mood. The weird thing about my journey that I've shared with Call On Courage and just my story in general is I had 3 difficult years all truncated together. So before I got my esophagus cancer diagnosis, I've had burnout because I've been part of a startup that was a bit bonkers and been working excessive hours and stuff like that. So because I've gone from burnout to then going into this physical illness, from mental health to physical illness, and then coming out the other side of that, I was thinking, "Is this going to really be a setback in terms of mental health journey?" And amazingly, it wasn't. And I think there was things that had been put in place in my life from the burnout that was like support networks and things-- I'm very creative, so things creatively speaking that I put into my lifestyle that I thought just really bolstered my mental health and kind of allowed me to recognize there was a purpose in this quite messy journey. Obviously, the surprise was, "Oh my gosh, I'm living off soup a lot and blended curries and things like that and everything." My blender gets used all the time, but I've also been quite determined to try and not hibernate or not massively change my social life. I've had to adapt my social life. And in the past, it would be a 3-course meal and a bottle of wine. Wouldn't think anything of it. But these days, it's just literally 1 course. It's either pudding or something savory that someone's blended if I can go out and get that, and then 1 glass of alcohol, and then I'm full. And I'm having to get in the habit of eating little and often. And I don't experience hunger. That's another sort of side effect. There's weird things about it because I don't experience hunger. It has become quite liberating because I've not got food on the brain. I'm not thinking about my next meal or-- I recognize the old version of Rachael was having to work a busy job, and then there was a lot of preparation around food and cooking from scratch and going to the shops and all of that kind of stuff. And everything's so much more simplified now in terms of what I purchase, whether it's ingredients or premade stuff. And it's quicker, and I'm literally just getting the nutrition in. There's still a pleasure to eating certain types of food, but that emotional connection to food has totally gone. And just the hunger isn't there. I've probably got to be a little bit more careful because I get a lot of steps in in a day because I'm active, that I should take snacks with me just because, even not having hunger, suddenly, I can be a bit-- not dizzy but light-headed. And that's when I recognize my blood sugar's low, and I need to kind of get something in to kind of give me energy. But yeah, the surprise would be, I guess, how liberating not having hunger is. And it's one less thing to think about, even though people listening to this, if you love food, that will be hard to wrap your head around because I understand that because I think it's such a big part of our social life and how we express ourselves. Dr. Frank Penedo: Rachael, I mean, it sounds like you've been coping remarkably well. And I think it's not-- shouldn't be very surprising to all of us that most cancer patients actually do very well. It's a normal fear, concern, anxiety surrounding the diagnosis and treatment. But most of them adjust really well, making these changes and adaptations as needed so that they can manage treatment-related challenges, limitations that are going to persist over time. Anything that you would advise for cancer survivors and patients on coping with cancer? Rachael Kearney: My 2 big things, I would say, that change stuff is community and purpose. And I think it's an obvious thing to say, but it's not going into that sort of tunnel mental health-wise around like, "Why me?" Because cancer is so indiscriminate, and the statistics we see on TV in the UK is 1 in 2 of us will have cancer at some point in our lifetime. It's obviously just more of a surprise when it happens when you're younger. But I'm massively grateful because there's a very special treatment center in the UK called the Christie, so that's where you go and have chemotherapy. And I was sat in the waiting room one time in the Christie, and there was just a very smartly dressed gentleman probably in his 70s. And I was asking which doctor he was waiting to see, and it was the same one as mine. And it turned out that he had exactly the same cancer as me. But when we spoke about what his treatment was, he was told he had about 6 weeks to live. Esophagus cancer is an aggressive cancer and I'm just-- honestly, there's not a day that goes by that I don't give thanks because the gratitude side of things is it was actually treatable even though it was advanced, and they were able to remove it. So I'm hugely thankful for that. And I know there's going to be people listening to this at all different stages of their cancer journey and different outcomes, but I think the community side of things for me was actually having friends that were like family that kind of swept in in Manchester that would come and visit me. I mean, come and visit me when my hair was falling out, when I was looking a mess. It was sort of important that people saw me at all different stages when I had the feeding tube in and post-surgery and stuff like that. But, yeah, I was massively grateful for that community. So I think being part of some kind of community or being open with friends around where you are and what you need-- and sometimes, you need privacy as well as that. But yeah, I think connecting with people and seeing people when you're unwell is important to process stuff with people. Dr. Frank Penedo: Absolutely. You touch on so many words that resonate with me as a behavioral scientist. We know social support and community is just critical to helping individuals navigate through a cancer diagnosis and survivorship. Social support is one of the strongest predictors of quality of life, for example. So having that sense of community support is really critical, and it sounds like you had that available for you. Also, having faith in the treatment you're getting and your treatment team is critically important because that's going to empower you to understand and believe that you're going to be able to challenge this and fight it and get better. You talked also about sense of purpose and sense of purpose and gratitude. And sense of purpose is really important. And I want to talk a little bit about this website and podcast, Call On Courage, which I love the name. So we know that cancer can be a devastating experience to many, and having courage is really a word that I use to describe many of the cancer patients and survivors that I work with, that I interact with. Can you tell us a little bit about this Call On Courage project and what your goals were? Rachael Kearney: Yeah. Oh, absolutely. It's been something-- I actually started it prior to having cancer. So I started Call On Courage and the website CallOnCourage.com that started when I had burnout because I was really-- I've been basically part of something, a business venture that was faith-based. And I kind of thought that was something I was going to be part of for years and kind of do it with excellence and really go for it. And so when I did have burnout, it was just devastating to really let go of that because, yeah, I thought that was part of kind of what my future career would be attached to. So Call On Courage started initially just as a blog. I was just writing to kind of process some of those feelings and work through some of the sort of things that I felt. It sounds like a strong word because it was a work venture, but a sense of grief, a sense of loss to do with not being able to sustain in the business. So writing and blogging was just something that helped me navigate those feelings. And then I just recognized I ended up-- if I'm honest with you, I deleted a lot of those posts because I guess they felt like quite journal-like in their quality. And I thought, you know what? I want to create something that's a platform and a conversation starter about other people. There's so many other people out there that have got stories about having to start over or they've tried something, they failed, it's not gone in the way that they thought it would go. And so creating Call On Courage as a podcast, doing it as a podcast has definitely opened the door for just building friendships and connections across the world, basically with all different types of people that have done interesting things. There's a woman that I'm still in regular contact with based in California. She knew at elementary school that she wanted to be a software engineer. She achieved that and then decided she hated it and then ended up having to do something totally different. There's another woman, Lu in LuLand, who's all about growing old outrageously. And she was in Portland and wore lots of fabulous outfits. And then she's moved to South London. And she's in touch with me now regularly as well. And, yeah, having a conversation with a guy, Mike Janda, who had a creative agency that serviced Hollywood and did $25 million worth of billings to creative clients. And we're having a conversation this afternoon. So I've not got a massive Instagram following or anything like that, but it's something very emotive about courage. And I think we've all got-- everyone's got some kind of story about grit and stamina and having to kind of dig deep to make harder things happen, whether that's health or career or whatever it is. But I'm particularly interested in that connection between creativity and courage together. Dr. Frank Penedo: It is so important for other patients and survivors to hear a story from a survivor like yourself. It's relatable. It creates a sense of commonality, understanding that they're not alone and relating to experiences that you've faced, even if they have a different type of cancer, because some of these challenges are very universal across different cancers. And let me again thank you for sharing your personal story, which is very powerful. How do you think hearing your story can help someone cope with a challenge like a cancer diagnosis? Rachael Kearney: Hearing my story? Dr. Frank Penedo: Yeah, your personal story. Rachael Kearney: I mean, my type of cancer is rare. So I was finding when I was googling-- I mean, it's not the best thing to do when you instantly get a diagnosis, but I was googling esophageal cancer. And the stats around it on Google aren't great. Yeah. It wasn't great when I was unwell to look at that, but it took a long time to get to actual sort of stories or testimonials around how people recovered from esophagus cancer. And so I felt a bit like one of the reasons-- and this is why I've written a piece for Cancer.Net as well. It was important to write about my story, was that at least there's a few more websites that have featured kind of what I talk about is my journey, what's been positive about recovering from esophagus cancer, because I was really struggling to find those particular stories online. And it was skewed-- well, the data around esophagus cancer is skewed way more towards much older people over 65, heavy smokers, drinkers, and more men that have this illness. But I mean, I also want to give sort of grace for the fact that every type of cancer is different, and even just speaking to people that have had breast cancer or ovarian cancer or whatever that is, or even a benign tumor that might have grown somewhere else, it's so case-by-case specific that I wouldn't be in a position kind of to dish out advice to say, "Oh, everything is going to be fine once you get your diagnosis. And it's about do these 3 steps towards gratitude and a creative project and X, and everything's going to be peachy." I really wouldn't patronize people with that information because I think you have good days and you have bad days with it. And it is definitely a journey of processing it through. I think me personally, I found my faith in my prior life really kind of bolstered things as well when I was processing things on my own that I wasn't kind of totally alone in working that stuff through. But I just think, yeah, kind of going back to the original point, I think it was just really practically important to kind of get a bit more content out there about esophagus cancer that's coming from a younger perspective and from a female perspective, because I think that was something that I found hard to research on when I was looking. Dr. Frank Penedo: It's certainly a challenge, Rachael, for many providers, because there's a lot of resources for breast cancer, for example, prostate cancer, but the less common, more rare cancers, we still haven't done a great job of getting the word out there and creating the necessary support services. So I cannot over-emphasize how important it is to hear a personal story like yours to help these survivors. Just a few words in closing, Rachael, what advice do you-- what advice do you have for other people with cancer and survivors who are interested in sharing their story? Rachael Kearney: Yeah, I think even just writing down what's happened for yourself is really critical. I think you don't have to necessarily get your story out on a blog. I was nowhere near that headspace as I was going through my treatment or illness or anything like that. But writing definitely kind of helped me process some of those feelings and the difficulty of it. I think if you're in a position to be able to-- I mean, I'm quite fortunate that I come from that background of building websites and creating stuff for myself, and I'm quite used to doing that. But I think if you can do it through a free platform or on social media and start to share your story when you're well, that's also a really great way of getting it out. But I've been really surprised and fortunate that I've approached places like Cancer.Net and, in the UK, Macmillan and some other cancer charities and cancer blogs and just asked, "Would you be interested in publishing my story?" And that's led to some great conversations like I'm potentially doing some press for another digestion charity in the UK that wants to talk about Christmas and the difficulties of someone like me living on a puree diet, kind of how you navigate holiday season or whatever with food. So I've just found it's been a source of conversation starter and a sense of-- I'm in this interim phase between recovery, and I want to get back into work and stuff like that. And it's enabled me to kind of create things and pieces of work that I'm proud of. I'm in creative industries, so I can talk about that when I'm in job interviews and things like that as well. It kind of feeds into that, which has been wonderful. But I think you're in charge of your own story, and you don't have to overshare anything. So share as little or as much as you want about it. But I've definitely found there has been a response to it and, because I've shared with much bigger cancer organizations, that's also, on a very pragmatic level, that's increased a lot of traffic to CallOnCourage.com, and I'm seeing a lot more visitors from around the world. And the spread is kind of mixed a lot more. So I'm massively thankful for that because it's just wonderful that other people's stories are kind of getting out there as well through the blog. Dr. Frank Penedo: Well, Rachael, I want to thank you for sharing your very remarkable and inspiring story with us today. Thank you for your time, and it was great having you. Rachael Kearney: Oh, thank you so much, Frank. I've really enjoyed it. ASCO: Thank you, Ms. Kearney and Dr. Penedo. You can find more stories from people with cancer at the Cancer.Net Blog, at www.cancer.net/blog. Cancer.Net Podcasts feature trusted, timely, and compassionate information for people with cancer, survivors, and their families and loved ones. Subscribe wherever you listen to podcasts for expert information and tips on coping with cancer, recaps of the latest research advances, and thoughtful discussions on cancer care. And check out other ASCO Podcasts to hear the latest interviews and insights from thought leaders, innovators, experts, and pioneers in oncology. Cancer.Net is supported by Conquer Cancer, the ASCO Foundation, which funds lifesaving research for every type of cancer, helping people with cancer everywhere. To help fund Cancer.Net and programs like it, donate at CONQUER.ORG/Donate.