Kathleen Langmore · 51 min
Two friends, one at the start of a cancer journey, one just out the other side, share an honest, hope-filled conversation proving that mindset and community can be as powerful as medicine.
Hear this story
Kathleen Langmore was fit, active, and confident in her body when a mammogram after a climbing trip to America detected breast cancer. She chose surgery and moved on. Two years later, a persistent cough and dropping energy levels led to tests that revealed stage 4 melanoma, not on her skin, but deep in her lungs and elsewhere in her body. The diagnosis arrived without warning during an appointment where her oncologist hadn't read her biopsy report. In shock and physically failing, she couldn't advocate for herself. Her eldest daughter did it for her, demanding accountability and immediate referral to a specialist.
What followed was Kathleen's decision to fund immunotherapy herself at a cost of $150,000 rather than start with targeted chemotherapy. She worked closely with her doctor to manage side effects as they arose, addressing problems immediately. Within six months, she was walking again. A year later, she completed a 15-kilometre walk in South Africa. She also left her job in 2018, unwilling to spend three hours commuting each day when her time had become too important. Today, she remains in recovery and openly reflects on what the experience has changed: her tolerance levels, her sense of what matters, and her understanding that cancer doesn't discriminate based on how well you've lived.
This conversation between two longtime friends, one at the beginning of his own cancer treatment, the other looking back, explores what actually helps: family advocacy when you're too ill to speak for yourself, medical support that listens to you, community that shows up, and the choice to rebuild your life around what feels true.
“I want you to paint your scars gold and put something up on Facebook.”
“just to have someone who's done the journey before with an amazing uh outcomes is just it helps build the Hope in me.”
“having a diagnosis like this is pretty lousy but it's not the end especially nowadays there's a lot of medical assistance available.”
The hero, today
When you get a diagnosis like stage 4 melanoma, having someone in your family who can advocate for you is not a luxury, it is essential, especially when you are in shock and cannot advocate for yourself. Immunotherapy worked very well for Kathleen with minimal side effects, but it is different for every person, and some people may not see improvement for months, so maintaining a positive mindset while waiting for the treatment to work is crucial. Kathleen managed her immunotherapy side effects by working proactively with her doctor and addressing problems immediately, and she credits this approach with making her overall experience much easier than it might have been. A cancer diagnosis forces you to revisit your priorities and your life, and Kathleen chose to leave her job so she would never again spend three hours commuting when her time had become too important. Having a support network of family and friends matters profoundly, but so does retaining your sense of self and refusing to be absorbed entirely into the role of being a patient.
Yes. Kathleen Langmore is a real person who shared their own story in their own words. Kintsugi Heroes is a not-for-profit that shares first-person stories of overcoming adversity, told with the person's consent.
Kintsugi Heroes, a registered Australian not-for-profit. Every story is shared with the hero's own consent and reviewed under Kintsugi Heroes' trauma-informed content standard before it goes public.
When you get a diagnosis like stage 4 melanoma, having someone in your family who can advocate for you is not a luxury, it is essential, especially when you are in shock and cannot advocate for yourself.
Immunotherapy worked very well for Kathleen with minimal side effects, but it is different for every person, and some people may not see improvement for months, so maintaining a positive mindset while waiting for the treatment to work is crucial.
Kathleen managed her immunotherapy side effects by working proactively with her doctor and addressing problems immediately, and she credits this approach with making her overall experience much easier than it might have been.
Aveline Clark (Host) · 00:03
Welcome to the Kintsugi Heroes podcast, where we share inspirational stories of everyday people going through different challenges and how they overcome them. Please be aware that the story you're about to hear may have moments of deeply felt emotions and personal experiences.
Kathleen Langmore & Ian Westmoreland (Guest) · 00:20
If anything you hear has a triggering effect, please reach out to someone who can help keep you safe.
Aveline Clark (Host) · 00:28
If you love this conversation, please like and share it with your friends so we can continue to share more inspiration and hope to as many people as possible.
Kathleen Langmore & Ian Westmoreland (Guest) · 00:37
Now listen up for our next hero's story. My name's Matthew Bliss, and this week I've stepped in as guest host to have a chat with Ian Westmoreland and Kathleen Langmore about their journeys with cancer. Ian, the founder of Cancer Be Heroes, has only begun his trek through treatment, while his longtime friend and colleague Kathleen has come out the other side with experiences to share. It was a delight to see the exchange of energy between them in this episode, but I also learned how the strength of one's mindset, in addition to the medicine, is crucial to surviving a diagnosis that has taken so many lives. Thank you for joining us for another inspiring story And here is my conversation with Ian and Kathleen. Welcome back to the Kintsugi Heroes podcast, where we talk to inspiring people about their inspiring stories. And I am your guest host this week, Matthew Bliss, joined by our founder Ian Westmoreland and our guest Kathleen Langmore. To talk about their inspiring stories. Welcome. How are you both doing today? I'm doing great. Thanks, Matt. I'm really looking forward to doing this podcast with my good friend Kathleen. And so thank you for the opportunity to talk about this. No problem. How are you, Kathleen?
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A cancer diagnosis forces you to revisit your priorities and your life, and Kathleen chose to leave her job so she would never again spend three hours commuting when her time had become too important.
This conversation includes two friends meet in a caravan park, from south africa with three kids, a daughter rescues ian from a canyon, the arrogant fitness that got knocked down, a cough after being cleared and stage 4 melanoma delivered without warning.
Aveline Clark (Host) · 02:12
Good, thanks.
Kathleen Langmore & Ian Westmoreland (Guest) · 02:14
Excellent. Well, why don't you give us a bit of background about the two of you? How did you two meet? And, uh, what's bringing you here today? Can I start, Kathleen?
Aveline Clark (Host) · 02:24
You can start.
Kathleen Langmore & Ian Westmoreland (Guest) · 02:27
So we, we met of all places in a, a caravan park in Sydney, in a place called Brouwer. The caravan park was La Mancha, which sounds really grandiose, but it wasn't that grandiose. Um, I just moved with my wife Helen and our 4 kids from Auckland in New Zealand, uh, there. We were looking for accommodation and I met Kathleen and her husband George and the 3 kids in the caravan park. Kathleen, I assume you come straight from South Africa. Is that—
Aveline Clark (Host) · 02:56
Yes, yes. With a brief stopover in the Blue Mountains at a friend's, at a friend's house. And then we also landed up in the caravan park. So we just emigrated with our 3 kids. And my first introduction really was seeing Ian's wife, Helen, energetically riding a bicycle around the caravan park with 4 kids. And I thought, oh, nice lady, lots of energy.
Kathleen Langmore & Ian Westmoreland (Guest) · 03:24
This would have been in 1997. And my thinking was, so we're waiting to get a house. I thought, oh, we'll save a bit of money in the caravan park. And we were paying $600 a week rent. And then we needed extra blankets and they charged us extra for the blankets in there. But in the initial discussions, I was running an IT team, and when I learned Kathleen's skill, it was a logical fit to a position we were trying to fill. So, it would have been shortly after that, Kathleen, you started working with us, was it?
Aveline Clark (Host) · 03:58
2001, so it was about 3 years after.
Kathleen Langmore & Ian Westmoreland (Guest) · 04:01
Yeah, okay.
Aveline Clark (Host) · 04:02
But I think what was interesting was that our lives have kind of overlapped. An enormous amount. And, you know, we've bumped into each other on occasion, all the time, you know, inadvertently, as well as obviously making plans to meet up. And I think the funniest though was when Ian went to South Africa on a trip once, and I'd mentioned very vaguely that we had a home with my parents in a place called Plettenberg Bay. And Ian was in a coffee shop in a place called Knysna, which is down the road, and he said, um, does anybody know the Langmores? And this is a good half an hour's drive away from where we live. And, and lo and behold, somebody knew us. And not only did they know us, but they started to give Ian all sorts of intimate details of our lives that we might have preferred to have kept private.
Kathleen Langmore & Ian Westmoreland (Guest) · 05:01
So I thought you're going to share the other story. So Kathleen and her family, her parents, are serious like mountain climbers. I Kathleen's dad is in his nearly 100s, has written books on climbing mountains in South Africa. Anyway, they conned me into, and my family, into, uh, going, uh, canyoning in the Blue Mountains, uh, which is where you abseil down through freezing water into this freezing pool. And I tightened up my carabiner too tight, and I was stuck in there. My fingers were numb, I couldn't undo it. And one of Kathleen's daughters had to swim out and, and rescue me, save my life. And, uh, so she continues on with this, uh, incredibly, uh, courageous, independent mountain climbing type lifestyle. And, uh, yeah, and the whole family's like this. In fact, one of your kids, Kathleen, is ranked in the world in rock climbing.
Aveline Clark (Host) · 05:53
Oh no, she used to be. She's now got two children, which kind of holds you back a bit, but she's still competing. Yes, she and her husband own a climbing gym in, in Melbourne. Well, 4 climbing gyms in Melbourne.
Kathleen Langmore & Ian Westmoreland (Guest) · 06:08
Wow.
Aveline Clark (Host) · 06:08
Yeah.
Kathleen Langmore & Ian Westmoreland (Guest) · 06:09
Sounds like you're both serendipitously connected as well as being entrepreneurial and all of the other things you can imagine being inspiring. And your connection is obviously clear. It's clear that you're both incredibly good friends having—
Aveline Clark (Host) · 06:23
Well, we're very comfortable with each other. We've worked together for a very long time now.
Kathleen Langmore & Ian Westmoreland (Guest) · 06:29
That's it. But there's something else that you haven't talked about yet that brings you to the episode today that we're going to talk about. And Ian being at the beginning of his journey, of this particular journey that we all hope that we don't have to experience. And Kathleen, as I understand it, you being towards the end of that journey, or what we hope is the end.
Aveline Clark (Host) · 06:52
Well, yeah, the one thing about cancer is that you're never really at the end. It's a bit like being an alcoholic. You're always a recovering alcoholic, you're always a recovering cancer patient, I think. But all good.
Kathleen Langmore & Ian Westmoreland (Guest) · 07:09
Yes, and I can relate to— my brother was diagnosed with leukemia when he was young, and being very familiar with that experience too, you can go into remission, but you never have your journey end.
Aveline Clark (Host) · 07:25
Yes.
Kathleen Langmore & Ian Westmoreland (Guest) · 07:25
It's just a little bit longer and longer between double-checking to make sure that you are on the right side of that thing. Um, but Ian, this conversation came about not just with a revelation, but also an experience on your part. Do you want to share a little bit of the beginning of your journey with, with cancer so far? I guess the journey goes back to this crazy period when I was growing up. Where we would, uh, everyone would strive to get a healthy tan. We would put, uh, in fact, I thought of this vision this morning. I think there's a Coppertone ad with a young girl with a dog, uh, attacking the, the undies and pulling them down, showing the tan mark. And the look on your face, and Matthew, you know, it's all— it's a different time of advertising back then. It was very different. But it was a campaign, and you would you would go out and you would deliberately get burnt, or we call it tanned. And I remember as a kid, I would, uh, at one stage I had all these massive blisters came up on my shoulders, and my nana getting some needles and scissors to burst the blisters. And it was a pattern that which is consistently followed among my generation. Now fast forward into my 50s, and increasingly skin stuff started to happen. So I've had what they, the skin guys call the trifecta. I've had the basal one, I've had the squamous cell one, and I've had, uh, well, now 4 melanomas. And the first 3 were all just removed. The last one that was removed was about 3 years ago. It was up here, uh, diagnosed, and it was big section was cut out, and we thought that was it. And then later on, uh, around December, I started becoming aware of something down here inside the skin. Didn't worry too much about it. Eventually got it checked out. The doctor didn't think it was much to be concerned with, took a biopsy, said, 'We need to be concerned with this.' So I thought, 'Oh, no worries, just cut it out.' But it's, it, it's, it now had metastasized, which is totally different ball game. And then from that, um, he referred me to an oncologist. Um, the oncologist arranged for me to have a brain scan, and there is one. Uh, but the brain scan, I was going to say, all clear other than the brain. And what they call a PET scan. And a PET scan, they inject this radioactive material into you, and you go through this scanning machine and identifies hot spots., and for me identified, um, 3 hotspots, uh, one which is the area where I felt the small bump, uh, one in my thyroid. I only found out the thyroid was there in the last week. I used to think it was up here. So you don't have to be a genius to, to, to get this. Um, and one on my knee, which they, they weren't concerned about. They thought that was unrelated. So the next step was to booking for some surgery, which I had a week and a half ago. I don't know, my wife and two of my daughters are nurses, so we have a whole bunch of discussions around the dinner table around cutting, and usually finishes up with poos and wees. But so I just, if I go too far with anyone, I apologize. But anyway, so what they've done, I don't know, I can't see this because on the side, but they cut from here, I think, down around here, and peeled my cheek forward and took out the melanoma, which had wrapped itself around the parotid nerve, I guess it's called, and took out a number of the lymph nodes in my cheek. And they also took out the middle section of my thyroid down here., and I spent a few days in hospital and then came out last, a week ago. And one of the Kintsugi— sorry, um, for those who don't know, I founded two not-for-profit organizations, uh, Mentoring Men and Kintsugi Heroes, which is why we're here today, is all about sharing overcoming adversity stories to provide hope and inspiration to others. One of the board members, John Millamy, rang me and said, "Well, how are you going?" I said, "Why haven't I seen anything publicly? You're a consecutive hero. It's all about sharing adversity." He said, "Nothing." He said, "I want you to paint your scars gold and put something up on Facebook." I thought about it overnight and I thought, "Yeah, I should do this." So I put up this post and I had an unbelievable response. It was just so overwhelming, the love and the the care that came back. And one of the responses came from Kathleen, and she said, 'Hey, I'll call you.' And, um, we rang, and I know a bit of Kathleen's journey, and, um, I'll leave it for Kathleen to share. But then I thought, this is, this is something that a lot of people don't talk about. In fact, Kathleen shared before that, um, She's been reluctant to talk about this stuff. So I really appreciate her coming forward now. But here am I about to go on a journey. And I can look ahead and I, to be honest, I'm feeling pretty good with most things. But there's someone further down the journey who's been through a lot of this stuff. And just in the chat that I had to Kathleen last week, it just gave me such, it gave me the hope, it gave me the inspiration. Also incredibly impressed with this dynamic, don't take no for an answer, Aarif and Jim. Hopefully, she'll share some of that story. I thought this would be a great podcast because there's a lot of people, anyone gets to my age, we know people. I hate using the C word, by the way. I prefer to call it melanoma than cancer. It's part of my mindset. Um, but so many people don't talk about this. So my hope for this is that anyone watching or listening to this is going to get some inspiration. They're going to get some hope from this, for either for themselves or someone else that they're, uh, helping to, you know, support. So that's my story. Um, I, I'll— yeah, before we shuffle on to Kathleen and hear her side of this, um, inspiring discussion you had as a result of your post. I'm interested to dive a bit deeper, Ian, about, uh, what you said about not referring to it as cancer, but more preferring to refer to it as a melanoma. In terms of your mindset, is that, um, more of a desire on your part to relate to a specific condition, or is it that you prefer not to be lumped together with, um, as you say, not specific stories, but more just cancer awareness in general, not being a targeted activity like, um, we're trying to do today. So I hate the cancer word. Um, my brother died of, uh, lung cancer-related, uh, illness at 54 years old. My mother died of lung cancer-related illness at 58 years old. And it's prevalent in my family. So I guess apart from what we used to do with the sun and all that sort of stuff, there's also a genetic disposition to this. Through Kintsugi Heroes, I connected with this amazing ex-medical anthropologist in Hawaii, Dr. Tracy. And— My stance on this is that, like, I'm a fighter competitively. Kathleen would know from my work experience. I just, I just, I'll do everything. I'm quite relaxed no matter what the outcome is, but I'll do everything I can to have a good outcome. So I'm working with Dr. Tracy, and I'm, I'm taking supplements. I'm trying to get my body in the best, uh, immune position that I can. So Um, so looking at doing that, I also want to get the mindset right. So I, I'm going to keep fit. I'm already ridden my bike a couple of times since coming out of hospital, and I'm gonna— my goal is to ride it like 5 times a week, but more conservatively. In terms of my mindset, I want to think positive thoughts. One of the things Tracy said to me was— if you can imagine the good cells in your body fighting the bad cells. So I don't want to go into this doom and gloom thing. I want to go into this positive frame, and that's where my mind is mostly at. My faith also comes through in this, and there's some stories around that as well. So, Matt, coming back to your question, I just want the best positive attitude I can to have with this. To me, it's what Kintsugi Heroes is about. And it, for me, Kathleen is a considered hero. Well, you are yourself as well, not only having been on episode 1. If you'd like to, to hear more from Ian, please go back into our back catalog. But, um, yeah, that, that creating this as a personal journey from you for yourself, but also having that experience that, that makes you understand it better than someone who's undergoing this journey for the first time, that really speaks strongly to how you're addressing this. Whether it's a genetic predisposition or your experience forcing you to be proactive, it sounds like you're setting yourself up for success there, and we certainly hope that it's every success for you. Thanks, Matt. But we also have to recognize that you are co-opting this for a podcast, um, you know, sharing your story. That's as inspirational as it could be. Um, and in saying that, Kathleen, would you mind sharing a little bit of your story, whatever you're comfortable sharing, of course? Uh, yeah, sure.
Aveline Clark (Host) · 17:50
I, I understand totally where Ian's coming from. Um, I use the word cancer because I've had more than one. But I think that the big thing is you don't want the conversation about your life to be all about cancer. You want the conversation about your life to be about what you're achieving, what you're doing, you know, different things. And it becomes— you become a patient. And sometimes being a patient is a bit of a pain. You don't want to be a patient all the time. You want to be an individual. You want to be yourself. So for me, I think I was arrogantly fit. I was looking at the other women around me and feeling I could walk faster, run faster, you know, do more daring stuff than the women of my age. I was arrogant. I got knocked down. So the first indication that I had that I had cancer was— and I really got to thank the Australian medical health system for keeping me alive. Because the first indication was after a trip to America where we'd climbed, you know, walked to the top of El Capitan. We'd had an encounter with a black bear. We'd, you know, we'd had a lot of fun camping in a little tent just around America. And I went for a mammogram and they picked up a very small cancer. So at the time I was offered various options and I decided that the best option for me was to cut the thing out and carry on with life. And not have anything more to do with it. No more chemo or anything like that. So I did that and I was only in hospital for 3 days. I also have a daughter who's a nurse and she whipped me home as fast as she could and then left and went down to her boyfriend in Melbourne. So it was good. I was out of hospital, which was nice. And then, yeah, then I think after, I think it was the second year of, second or third year post breast cancer, I went for a checkup with the oncologist and he said to me, oh, you're looking very good, you're cancer-free. Two days later, I started to cough. I had a sudden sensation in my chest, very, very sudden, and I started to cough. And I went to the doctor, got an antibiotic because it was just before Christmas. And 2 weeks later, the cough was worse. And I also noticed that my energy levels had decreased. I couldn't walk upstairs without stopping, and that was very unusual for me. So I went back to my GP and I said, this is a bit weird. And he sent me for an X-ray. And then you have that moment where they say, oh, if you don't mind, we'd like to do a CT scan. And you think, "Uh, that's not good." And my melanoma was nowhere on the skin. I'd always actually prided myself on having good skin. I never really did what Ian did. I never went out and sort of sat in the sun. But having said that, I did go and sit on rock faces for hours in the full sun. Often you can't get away if you rock climb, you can't get away from the sun. And as a child, of course, we didn't have all the sun protection and people weren't quite as sun-conscious. As a child, I did also have episodes like Ernest saying, you know, burning skin and being in agony. But there was nothing on my skin. So I had no actual melanoma that anybody could see or identify. I'd been going for regular skin checks and I'd never had anything. So initially it was a bit of a bad introduction because initially they thought that I perhaps had lymphoma and I went for a biopsy and then had to wait for absolutely ages because this was now January and all the doctors were away. And when I eventually did see the oncologist, I had my psychologist daughter with me, my oldest daughter. And she— anyway, he sort of hadn't bothered to read the report. And by this stage, I was feeling very, very ill. I felt like I was actually slipping away. And I'd actually phoned his offices a couple of times and said, I want to know the results of my biopsy because I feel that I need to know urgently. And I'd been told I had to wait to see the doctor. So that actually had delayed me discovering what was wrong with me for about 2 weeks. And when I did see the doctor, he hadn't read the report. He started to read it in front of me. He said, oh yes, well, when I saw you last, I thought you had— and he said, oh, oh, oh, I'm so sorry. I didn't know I'd have to tell you this. 'But you've got stage 4 melanoma.' And at that point, the only thing I knew about stage 4 melanoma was that people died within 3 months, you know, that I— that from my own experience of friends who'd had it. And so it was obviously a big shock, and my first reaction was, 'Oh boy, I better get home and start making my will, you know, make sure my will's up to date.' And, um, and a very strange feeling of gosh, we've just moved on to a 5-acre property. I had big plans for what I was going to do, and actually this is now all stopping. Everything is just— it's like everything suddenly comes to a stop. And, um, I— one of the things I'll be saying later, that my advice to everybody is to get some member of the family who can help be their advocate. And my daughter and my husband were with me, but my daughter immediately said to this doctor,, you know, you have just wasted the most valuable 2 weeks of my mother's life. What are you going to do about it? And had this man sort of basically— anyway, so he directed me to Professor Long at the Melanoma Institute because he had a friend who apparently had that. And she, my daughter, said, well, you make that call right now. We want to have an appointment, you know, ASAP, and you're going to do it for us. So she really advocated for me. I was in a state of shock. I don't think I was able to do that for myself at that point. So anyways, it took only a week before I saw Professor Long's rooms, went to Professor Long.
Kathleen Langmore & Ian Westmoreland (Guest) · 24:10
She—
Aveline Clark (Host) · 24:11
her rooms were really good. I've also discovered along the way nurses are the most amazing people. And, you know, often the doctor will see you for 10 minutes. That's it. Out of your mind, you know, on to the next patient. The nurses are kind of really there for you. And I had a conversation with a nurse that was incredibly reassuring and lovely. And then I went to see them and the first reaction was, I don't think you've got melanoma, you don't look sick enough. And my daughter was saying, you don't understand, my mother used to walk up a hill with a 3-year-old on her back, get to the top and say, let's find another mountain. Now she can't walk across the room without holding onto furniture. You know, there's something very, very wrong. Anyway, so I then had to go for various other tests and obviously CT scans and the PET scans, and they found that I had the melanoma in various places throughout my body. But I had a few miracles along the way. One of them was that they wanted— they didn't know exactly what sort of melanoma it was and they wanted to do another biopsy. But because it was in my trachea and they had to go through the front of my chest, they were worried about bleeding. And so they needed to wait for a heart— a cardiologist or heart specialist to do it. And I literally was in the waiting room— well, in the storage room, actually, in a sort of a cupboard full of medical supplies on a stretcher. And I'd be— my husband had been sent home and I was waiting for my turn to go into the operating theater. And the poor chap in front of me obviously had complications and so they went a bit longer. And next thing, the doctor came running in and said, okay, we're not operating on you. They've sent the pathology, your first biopsy off and we've got the pathology we need. We don't need to operate. So I thought, phew, that was a close one. And the other thing that I did as soon as I realized that I had, that I was pretty ill was I got onto all my friends and I said, I need help, you can all start praying. And one of my friends is a Mormon from the Church of the Latter-day Saints, and she was in charge of the women's group or something. And she said to me, hey, Kathleen, I've got 50,000 women praying for you. I said, that'll do, I'm really happy with that. And she said, she said, 'Well, actually, I get the feeling you wouldn't care who was praying for you.' I said, 'You're quite right. Any creed, any religion, that'll do. I'm sure God's listening.' I just felt I had too much to do, much too much to do. And I've got elderly parents. I had a pregnant daughter. I just felt that this was just not the right time. I mean, we all got to go at some point, but I wasn't quite ready for it. And anyway, so After that, I went to see the— when I first went to see them, immunotherapy wasn't an option on the PBS. So I was told that this was the best treatment, that immunotherapy was the best treatment. However, they would have to start me on a targeted treatment, which was a form of chemo, because otherwise it would cost about $150,000. So, dollars. And So I thought about it and I said, no, well, that's fine. As far as I'm concerned, I'm worth 150,000. And if I get better and I can work for another couple of years, I'll make that money anyway. So, you know, what's the point of not starting on the treatment? So they started me off. They were very reluctant because apparently people will sometimes bankrupt themselves to get enough to get treatment. And at which point I advised them that they were not my bankers, they were my doctors. And I would do what I wanted to do. And so I started the immunotherapy and luckily they started me on a very, very small dose. And then Bristol-Myers Squibb were very good and they gave me nivolumab. I can never say that word properly. Nivo. They gave me that free, free of a course of that free of charge. So I paid for what they called the big sledgehammer, which was a drug called Ipi. Which takes the brakes off your immune system. And, and I, and then I was given the Nuvima Lab as, as a, which is your sort of 2-year course. And that actually apparently does most of the work, but the other one is helpful and gets a slightly better result. And I was at that stage looking at the figures and saying, I'll take the better result. Thank you very much. And so that's how it all started. And then You know, as Ian said, the first sort of trip was in to go and have a— I hated needles. I'm over that now. But I went in and had to go in and sort of sit in a room full of people, all of us having our treatment. And the first thing that I noticed was that they all had running shoes on. They all looked very much like the sort of people that would be off on a surf or a cycle or you know, so it's not people who are, uh, it wasn't people who are sort of, you know, I don't drink, I don't smoke, I never, I always ate healthily. Um, it's people who are living a very healthy lifestyle but still obviously just their immune system's down, they've got the, they're exposed, got the sun exposure, and melanoma follows. And, um, anyway, so, but after that, I think I had to only go for a few times, I can't remember now, but a few times that I actually had to go into the hospital, to go to the clinic to go and have my infusions. And then after that, they actually would send an absolutely gorgeous nurse around to my home and I would sit having an infusion. We'd drink coffee and, you know, just wait for it to be done. And all I can say is that actually for me, it was more a bit of a pain in the neck and boring than anything else. I mean, really, the immunotherapy, I had a few side effects. I had, you know, a couple of rashes. I had a few things like that that were all resolvable with prednisone, which is cortisone, because what happens with immunotherapy is you're— especially with me, my immune system is now very overactive. So at that stage, I needed to educate people a little bit. I landed up in hospital once. They wanted to treat me as a chemo patient. I kept having to say to them, no, it's immunotherapy. Is my immune system overreacting? It's not. It's not. I don't have an infection. I'm sick because I've got, you know, my immune system's attacking itself, attacking me. So, so with a bit of, you know, so I had to kind of be proactive in that respect. And I think that if you are a patient on immunotherapy and you do get side effects, I think it's important. You've got to work with your GP. You've got to you know, you've got to let your GP know what it's all about so that you can get treatment when you need it. And you just got to address the side effects straight away, because if you do that, it's actually a much easier time. I've had people talk to me who've had a terrible time and they're saying they hate the treatment. They think they'd rather die than have this treatment. And I said, but it's only because of the side effects. That's what's hurting you, not the, not the treatment. So, you know, it just— some doctors are reluctant to give you the cortisone. Thank goodness my doctor was not. She was quite proactive. She always wanted to know, and she had a nurse whose job it was to— so that you could tell your doctor that you, you know, you had trouble and they would step in and then say, okay, we want you to take a bit of prednisone and now go off it. And they would manage it, sort of thing like that. So for me, it's actually been quite easy. And within, within, oh, you know, about 3 months, I was feeling much, much better, starting to walk again. It was kind of gradual. I used to do a lot of yoga and Pilates, and I have to admit, I still haven't got back to that, but that's laziness, not because— And it had been really bad. I was saying to Ian, I couldn't do a downward dog without, because it was in my lungs, without fluid just pouring out. So that was the end of yoga. It was like, I'm not doing that anymore. Not too much fun. But just gradually, within no time at all, I found that I was better. And I'm not alone in this. I actually have a couple of friends who've all also had similar outcomes, very, very similar outcomes. And it's been just amazing. I think we are very fortunate. We're at the time in history where we are able to get this medication. We're, you know, the advances in cancer at the moment are just incredible. So we're just lucky. We're all just very lucky people. And I also don't discount all those 50,000 women who prayed for me.
Kathleen Langmore & Ian Westmoreland (Guest) · 33:09
Of course.
Aveline Clark (Host) · 33:09
So grateful to them.
Kathleen Langmore & Ian Westmoreland (Guest) · 33:12
Yes, it sounded like you had a great support network.
Aveline Clark (Host) · 33:14
That was the mental support, was just feeling, okay, I'm handing this over. I didn't feel I could pray myself, which was an interesting thing. I didn't feel like I actually wanted to pray. I didn't want to talk to God anyway in case he told me something I didn't want to hear. So it was like, all of you can just do it for me. I'm just going to handle the cancer. You go on and sort out the rest for me.
Kathleen Langmore & Ian Westmoreland (Guest) · 33:40
Sorry for the interruption. This is Ian Westmoreland, the founder of Kintsugi Heroes, and thank you for listening to this story from one of our amazing heroes. Our mission is for these stories to provide hope hope and inspiration to people experiencing life challenges and to also educate the broader community on how best to provide support. If you would like to help us to continue to produce more hero stories and cover more adversity themes, we would welcome all donations. These can be made via our website kitsukiheroes.com.au. The donate function is at the bottom of the home page. We'd I also welcome any feedback. You can email me direct using ian@kintsugiheroes.com.au. Now let's get back to the story. There's a different kind of mindset that you have on at the beginning and at the end, and when you're right in the middle. I mean, you mentioned that your faculties were not necessarily the best to advocate for yourself, but also when you're staring at what could be the end of your life.
Aveline Clark (Host) · 34:50
Yes.
Kathleen Langmore & Ian Westmoreland (Guest) · 34:51
You know, that your priorities shift, your mindset changes.
Aveline Clark (Host) · 34:55
Yes.
Kathleen Langmore & Ian Westmoreland (Guest) · 34:56
It absolutely makes sense that you felt that way.
Aveline Clark (Host) · 34:59
And I wouldn't say that I've got away unscathed. I think that I do have a bit of post-traumatic stress. I think that I've become a little bit harder in myself in that I feel a little bit precious and kind of less tolerant of other people than I would have been before. I mean, there definitely are, you know, it does change you. I'm still waiting to find out what the better is. I'm not sure I've found that.
Kathleen Langmore & Ian Westmoreland (Guest) · 35:32
Well, it's interesting. We mentioned at the beginning that medically it's a journey that never finishes, but also mentally, psychologically. It's a journey that never finishes and we continue to grow and change. But it sounds like being able to speak of this experience with laughter in your voice and reflecting on the times where maybe it was a little bit silly and having that mindset is super important, I think.
Aveline Clark (Host) · 36:00
I think the mindset is, and like Ian, it was kind of non-negotiable that I was going to just sort of sit back and pass away. That wasn't going to happen. I didn't want that. And I was prepared to— I actually, I think in my head, I also, I've done also a little bit of project management and it was kind of like, okay, well, this is the first step. Plan B is we go on to that other drug. Plan C is we try cocaine. You keep going, you know.
Kathleen Langmore & Ian Westmoreland (Guest) · 36:29
It's going to do something, that's for sure. So that's really interesting. So just to shore up these details, because we may have people listening that are just like Ian beginning on this journey themselves, what was the total time from the beginning that you discovered the cough all the way to the point where you felt that you were on the other side of it?
Aveline Clark (Host) · 36:54
At least as far as you can— I think it was probably about June, so probably about 6 months. I would say, from feeling extremely ill to and really feeling like I was going. I mean, I was very sure that I never really felt anything like it. It's just all you want to do is just lie down and sleep and can't make it across the room and you're a little bit dizzy. And, you know, I think it was about 6 months to— I went back to see my parents in South Africa and I was able to get on the plane. I was able to— once I was there, I went and did a 15-kilometer walk, and I thought, well, okay, I'm, you know, I'm better.
Kathleen Langmore & Ian Westmoreland (Guest) · 37:36
It's probably a good indicator.
Aveline Clark (Host) · 37:38
Yeah, yeah. I mean, as I said, a lot of my friends started— perhaps I started with the most aggressive form of treatment straight away. One of my friends started with that, and it didn't work. He started just with the nevo, like Ian is going to. And it didn't work. So eventually they added in the one that I'd had and then it kicked in. So, but the thing to remember with immunotherapy is apparently it's different, very different for different people from the point of view that it can, there can be a big lag before it works. So I was told that there were people who they thought were not responding to treatment at all. And then, you know, 7 months down the line, suddenly their immune system kicked in and their tumours started to fade away. So I think it's all very, very personal to each person. But I think having a positive mindset and just knowing where they're going with all these drugs, I think, in fact, that Ipi that I used, I think, is possibly not being used anymore. I think they found another one that has been in trial. I'm not sure if the trial is finished, which does a similar thing, and it's not as, not as bad for your body. Not that mine's been bad, actually. I haven't had a cold for ages. Rather nice. Yeah.
Kathleen Langmore & Ian Westmoreland (Guest) · 39:08
Well, that's the thing. It sounds like you'd be the poster person for immunotherapy as the thing that solves everything.
Aveline Clark (Host) · 39:15
Yeah. I've been very lucky. Very, very lucky. Yes. Yes. Yeah.
Kathleen Langmore & Ian Westmoreland (Guest) · 39:19
So, Ian, upon hearing this, not obviously diving too much into what your medical options are at this stage, but, uh, hearing that immunotherapy was that successful for Kathleen, does it make you think that, that perhaps your journey could be a shorter one than perhaps your, your mindset might be thinking at the moment? Um, yeah, I'm not sure to— hopefully you meant by shorter that I've recovered quicker. Yeah, look, the plan is to put me on the same immunotherapy drug that Kathleen was on, Nivimulab, whatever it is. And I plan to do everything I can to make that work as quickly as possible. So I got heart from what Kathleen said. There's virtually no impact. Um, I lead an incredibly busy life at the moment. I, I, I, um, do this volunteer stuff 7 days a week. It's one of the challenges at the moment. My, uh, Helen, my wife, is, is putting pressure on me to cut back, reduce.
Aveline Clark (Host) · 40:36
I think you've got to think about why did you get the cancer.
Kathleen Langmore & Ian Westmoreland (Guest) · 40:39
Yeah, and one of Kathleen's comments to me last week is it, you know, there's a, there's different schools of thought. One of them is like stress can help weaken your system or make you more susceptible to that. And Kathleen worked with me for many, many years in a stressful job. And, and, uh, I, I appear to, people keep telling me how stressed I seem to look when I'm doing that stuff. Most of the time I don't feel that stress.
Aveline Clark (Host) · 41:06
I wouldn't say you're stressed. I'd say you, you're very driven. And you love— you achieve, you want to achieve. And, um, in fact, I'm very glad you're always doing it for good, Ian. It would be very— I would hate to see you as a criminal mastermind, a Putin-type character.
Kathleen Langmore & Ian Westmoreland (Guest) · 41:24
Yeah, so I guess I'm going through different stages at the moment. Um, one of them is to look at a plan to, uh, try and hand over a lot of the Kintsugi operations stuff, the someone else, but that, that requires some funding. Actually, can I put a plug in here? If anyone resonates with what we're doing with Kintsugi Heroes, uh, there's an amazing group of volunteers including Matt who are doing some great stuff, but we'd love to get some funding, uh, to continue this. I'd love to see this as a legacy, um, long after I'm not involved or, or, or, or around. Um, you asked another question before also, Matt, about the future. And I, I, I'd always planned to write my story, which when I told my family, my son said, Dad, if you write that, it'll be the most boring book of all time. But anyway, I started doing it and I started— in fact, Matt, based on some suggestions from you, I'm using a— I record my voice, I tell the story, and then it's going to get automatically transcribed using AI into some words and I'll go through and edit it. So it's not something that it's like, oh, I need to do this really urgently, but it's just something that I, I thought I should do. And I, I also want to focus more on family relationships. Over time, it's become more and more apparent how blessed I am with a family. So we have 4 kids, we, uh, our 12th grandchild was born about 5 or 6 months ago, and I just love spending time. I, I love being a granddad. I'm a much better granddad than I was a father, and I just love spending time with them. So I'm changing priorities around some of that stuff. So I'd like to reduce work, reduce stress around that, but, and spend more time on the family things. That's strong, despite them having obvious criticisms to you.
Aveline Clark (Host) · 43:25
You know, preservation are always one's best, you know, critics.
Kathleen Langmore & Ian Westmoreland (Guest) · 43:35
This daughter won't like me saying this, but when I was flat out setting up Mentoring Men, she said to me once— this is Sally, by the way— that, Dad, you care more about these men than you care about your own family. Yeah, and, uh, um, so it's an interesting juxtaposition though, isn't it? It's someone like yourself that's so driven to, to give to the rest of the world. It's, it's very easy to, to sometimes leave the, the things that are closest to us and the people that are closest to us either on a similar footing or kind of push them to the side. It's the interesting dichotomy of you from the conversations I've had with you so far. It's that not only are you willing to give for the people around you and the people who need it, but that you similarly talk on equal footing about your family, but perhaps just not to them. So, you know, you've called them out here, so this is your legacy too. If they're listening to this episode, then hopefully if they haven't heard it yet, then they'll know that, uh, you know, you're a family man as well as, you know, all the rest of it. Yeah, I think part of that goes back to the way we were raised. So, uh, back in my time, it was— men were stoic. In fact, there's a lot of confusion around how men behave. And, and, you know, uh, there was never any physical affection with my dad. And then you, as you become a father, you try and address some of those things, but a number of the characteristics still carry on. But I see with my son and my sons-in-law, they're far better at doing that than I was. So hopefully that trend, that trend continues. And that difficulty around saying things like, I love you— I remember, I think Bob Hawke was quoted as saying, when did you last— do you tell your wife you love her? And he's— I think he said something on the lines, well, I told her 25 years ago, and I'll let her know if something changes.
Aveline Clark (Host) · 45:40
That's good enough.
Kathleen Langmore & Ian Westmoreland (Guest) · 45:43
But I, I now realize the importance of stuff like that. So I, I hope my kids know how I feel. I hope my grandkids— but I could— I certainly could do a better job around that. And it shouldn't take the prospect of the journey we're about to go on to do that. It should be, I guess, people listening to that maybe should think along those lines regardless of anything happening.
Aveline Clark (Host) · 46:10
I think that brings us to really what my advice would be to anyone who finds themselves in the position of being diagnosed and suddenly they're getting sucked down into the medical system and finding themselves sitting in a white gown about to go CT scanner or whatever, you know, it just kind of— I think that for me it was a question of reaching out to the friends that were closest to me, reaching out to my family and especially my daughters. Very, very important the role that they played. My oldest daughter says she's still got, you know, post-traumatic stress from it all because I live with her. So she was having to really be there for everything. And it does make you adjust your priorities. You do actually have to revisit your life and look at what you're doing. I have to admit, I mean, I was, I can't remember, Ian, if I was still working with you at that stage, but I walked out of the office in 2018 with my computer and I never went back. So I was one of these working from home long before everybody else was, because I just at that point thought, actually, I'm not going to spend an hour and a half on the train every day. You know, it's each way, sorry, 3 hours on the train, you know. It's not going to happen. My life is now too important. My time is too important. So it does make you revisit all that sort of thing. And yeah, just you have to fight a little bit to retain your sense of self. I think when you get sucked into being a patient, even though the doctors and the nurses are absolutely lovely, there's still a little bit of the sausage machine feel to it.
Kathleen Langmore & Ian Westmoreland (Guest) · 47:57
Yeah. Well, on that note, Kathleen, you coming out the other side with advice for people. Ian, is there anything that you'd like to share perhaps in gratitude for what Kathleen's shared with us or that you'd like to throw out there for other people? It's, um, at a personal level, I really thank Kathleen for sharing this story. I didn't know all those details, but just to have somebody done the journey before with an amazing outcome, um, is just— it helps build the hope in me. And, and, uh, and I, I know because I spoke to you a few months ago, Kathleen, you've been reluctant to share this, but I, I really appreciate you doing this, um, after I requested it. And, uh, so thank you for me, and thank you for all the other people who are going to hear your story now, and, uh, and I hope that providing them.
Aveline Clark (Host) · 48:48
So yeah, I hope, I hope anyone who is watching this and is feeling really, really down, um, will, will sort of understand that actually, you know, having a diagnosis like this is pretty lousy, but it's not the end, especially nowadays. There's a lot of medical assistance available. And, and, and I think, you know, the, the other thing to think about is that you tend to think that it's only you that's ill. But I've actually had friends who were very kind to me who've since died very suddenly, um, and before me. So, you know, I think you mustn't get into the mindset of, well, you know, I'm the only one that's facing this, because actually death is part of life. We've all got to go that way. Uh, you know, the thing, the thing is, I suppose, is how ready are you and whether you've got feel like you've still got a lot to achieve and a lot to do. And nowadays, the medical, certainly immunotherapy for me has been, it was none of the losing of the hair, none of that. In fact, I just felt better. Just felt better.
Kathleen Langmore & Ian Westmoreland (Guest) · 49:58
Yeah. I'm at a competitive advantage there. For our audio listeners, Ian is follicularly challenged.
Aveline Clark (Host) · 50:09
A lot of people might say that at my age, it's time to cut it all off.
Kathleen Langmore & Ian Westmoreland (Guest) · 50:14
One of my grandkids said, 'Granddad, you got a hole in your hair.' Well, look, I feel like very privileged to have been part of this conversation, not having yet shared a similar experience myself, but I'm very thankful to you, Kathleen, for sharing everything in your journey so far. The balance of feeling empowered, but at the same time reflective and understanding of the collective situation that everyone else might be in. And thankful to you, Ian, not only for bringing this podcast to life, but also sharing the beginning of your story that we all know, and I'm sure every listener is thinking of you as well, that you'll come out the other side of this with not only a novelization of your life supported by your children, but also happy and healthy for many years more. Thank you, Matt, for giving us this opportunity. Really appreciate it. Thank you. No problem. Thank you.
Aveline Clark (Host) · 51:15
We hope you've enjoyed this episode of Kintsugi Heroes. Please like and share the show to your friends so we can get this out to even more people. If you have a story you'd like to share with us, please reach out using the contact details below. Join us next week for our next hero story.
Kathleen Langmore & Ian Westmoreland (Guest) · 51:32
Until then, keep being you, and remember that we are all heroes in our own unique way.
You don't have to be in crisis to call.
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