Recording Podcast (Cherie Dear) with Sharee Johnson
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Sharee Johnson: [00:00:00] In this conversation with Cherie Dear, who's the founder and CEO of Dare to Hope, a charity in Australia raising money for research into pancreatic cancer. We talk about Cherie's lived experience and the many opportunities she's had to recalibrate. We could have gone on seriously all day. It's, really at its essence, a story about recalibrating after the worst thing that could happen or one of the worst things that could happen in losing your life partner, the person you love, uh, the most and you expect to walk your life with.
Cherie talks beautifully about the essence of life, making very conscious choices of, how to be conscious in the world and be present even after loss and grief. She talks a lot about hope and of course her foundation is called Dare to Hope. And so we talk quite a lot about pancreatic cancer. For those of you who aren't interested in the personal story, but you'd like to hear about Dare to Hope and the fundraising that Cherie's doing and the research landscape, you might like to listen into the back end of this [00:01:00] podcast.
She talks, very interestingly, I think about, having the dare, having the opportunity to want to imagine possibilities and to think about what you might want to hope for and how to be in the world. I hope you really enjoy this conversation with Cherie as she is reflecting on her own ability to recalibrate, the roles that support and community play in that, the proactive attitude, the agency that she demonstrates, perhaps unconsciously in the earlier part of her life and now consciously after Paul's death.
But those investments that we make early on to be on local committees, to be engaged and involved, actively involved in our community, and how that, comes about as part of our support and part of our ability to be well down the track. In this conversation we talk a lot about pancreatic cancer.
We talk about the cancer journey more generally. Certainly, we talk about Dare to [00:02:00] Hope, her foundation, and we talk a lot about the lived experience of being connected to other people, uh, entering the health system in a new role as patient and trying to understand what that means, and the importance of empathy, in the relationships between patients and healthcare workers
Sharee Johnson: It's my absolute joy and pleasure today to welcome Cherie Dear to the podcast. Cherie is the co-founder and CEO of [00:03:00] Dare to Hope, an Australian charity funding pancreatic cancer research. Cherie, with her husband Paul Dear, founded Dare to Hope after his diagnosis with stage four pancreatic cancer. Paul was a Hawthorn premiership player in Australian rules footballer, and the 1991 Norm Smith medalist, which for those who aren't in Victoria or in Australia, is the best on ground in a grand final.
Following Paul's death in 2022, Cherie grew Dare to Hope from a fundraising initiative into an independently registered volunteer-led charity and the official charity partner of the Hawthorn Football Club. With minimal overheads, the organization directs 93 cents in every dollar that it raises towards research funding, two named postdoctoral fellowships at the Peter MacCallum Cancer Center and the Garvan Institute of Medical Research, and there's a third on the way, which is really exciting.
Mm. The flagship, fundraiser for Dare to Hope is the Easter [00:04:00] Monday MCG football match that has become the centerpiece of pancreatic cancer awareness in Australia.
Beyond her work, Cherie is a curious mind and a natural thinker. She is drawn to the big questions and the quieter lessons life offers.
Much of her own story has been a recalibration. As Paul's primary support through his illness, as a mother of four, and in the years since Paul's death, she has come to understand how people steady themself when the ground shifts beneath them. A passionate and well-read lover of literary fiction, Sharee is happiest with a good book in hand.
She has a deep love of the AFL, the Australian Football League, walks and talks with friends, is devoted to her family, and is committed to staying healthy with a genuine interest in wellbeing.
I'm really thrilled to be here with you, Cherie. I can't resist the temptation to say that Cherie Dear is recalibrating with Sharee Johnson. Welcome, Cherie.
Cherie Dear: Thank you, Sharee.
Sharee Johnson: You've had an incredible, recent few years, [00:05:00] Cherie, and usually we start asking people what's happening now, but I think we need a bit of backstory in our conversation today. So in 2020, as I've said, you, faced a terrible diagnosis with Paul, your husband, pancreatic cancer, and not too long after Paul died, you lost your dad to the same disease. Um, just it's unbearable to even think about. I'm so sorry for this grief and loss that you've experienced. Can you tell us what it was like to receive that diagnosis?
Cherie Dear: Well, I think the thing was, Sharee, like for most, um, people that get diagnosed with pancreatic cancer, it came out of nowhere. And Paul was, um, one of seven children in his family, and just three years before he was diagnosed, we lost his younger sister to bowel cancer in her early 40s. And he, in her words, she said, you know, she'd taken one for the team, and I think we all [00:06:00] sort of felt that she was terribly unlucky and that you know, the luck had, bad luck had come our way.
And that therefore it wouldn't happen again, in a sense. Um, but because of her early diagnosis, Paul was, you know, he was a really fit and healthy guy, and very robust and, never really got sick, but, uh, he was having regular colonoscopies and everything because of that. So I guess, you know, we, we never suspected that his health would, turn.
And it was during COVID and he started having some digestive sort of upset. And anyway, he went to the doctor, and I think that was the lesson from Nikki's illness, that if something goes wrong, you start to feel something in your body, you need to go and get it checked out. And because of the family history, our local GP was really, um, you know, vigilant and, and sent him for bloods and scans and [00:07:00] things straight away.
And so I knew that he was, you know, going through that process, and then he got the call back, you know, to, you know, "We've got the results." And his doctor is my doctor as well, and I had this, um, sense that if there was going to be bad news delivered, that I would've been asked to go as well. And I remember that I went off that morning, um, for a walk with, um, a friend, conscious of the fact that he was, you know, going back to get results, but buoyed by the fact that I hadn't been asked to go.
And when I came back from my walk, his car was, was parked out the front, and I thought that was odd because Paul was a really hard worker and, he would just go back to his, his office, which isn't, far from home. But he was not one to work from home. And so seeing his car there, like I felt my heart sorta drop.[00:08:00]
And I think the kids were home or something because of, you know, no schooling during COVID. And he hopped out of his car and, like w- we just looked at each other and he said, "I've got cancer and it's everywhere." And he was completely devastated because I just don't think either of us suspected for one minute that it could be that dire.
I think it's like, you know, if you get shock news like that, it just, like, comes from nowhere, and I just remember just the absolute shock and horror of it. And I think we got into one of our cars and we drove away because we didn't want to be having this conversation where the kids might be able to find us.
And anyway, at that point, having just been told himself, and I think he, you know, he, he... when he said [00:09:00] it's everywhere, even though Nikki had died of cancer, we were still pretty cancer illiterate really. And, you know, now I know that if cancer has spread, and when they're saying everywhere or in multiple places, well, it's metastatic.
And any metastatic disease can be very hard to treat. So we knew that it was, was dire, but not the full extent, although I think maybe he had grasped that. And initially he just... he said, "I don't wanna have chemo" because he'd seen the impact on Nikki. And then later on that day, I rang our doctor and, you know, I couldn't believe it either and I, I was...
I've still asked him, "Why didn't you tell me to come to the appointment?" And I, I really don't have a clear answer on that, and we've become friends and I don't hold resentment or anything towards him. I think he just felt knowing our family situation, I don't know, that it was best [00:10:00] delivered to Paul solo.
But when I called him, he said to me, "Cherie, you've got to convince Paul, you know, to have the chemo. He's got to try treatment." And I was, yes, fully on board with that. Um, so yeah, it was pretty horrendous, Sharee, to be honest. And, you know, the fact that we've got four children and three of them were at home with us, our eldest son had come back from living overseas, but he, he was living interstate because, you know, Melbourne, most locked down city in the world, I think.
Mm-hmm. Mm-hmm. So we had the three children at home, but we didn't want to tell them what had happened until we knew the full picture. Mm-hmm. And so just because of the results of Paul's scans and things, they did not know where the primary was, and I don't... I still don't fully understand, but they could see it on his liver, but they were convinced that it wasn't liver cancer, [00:11:00] and they knew that it was coming from somewhere else.
So then we had to go through this diagnostic process and, like I said, we didn't wanna tell the kids, and they were like late teenagers. Calsher was, um, 16, so they're sort of a year apart, so 16, 17, 18. Um, We didn't wanna tell them until we knew the full story. Mm-hmm. And so we then went on this process of, trying to find out exactly what we were dealing with And, um, at the same time though, I've got a really close friend, who I walk with and,
and just before this, we got this diagnosis, her older sister, who was living in Queensland, got a pancreatic cancer diagnosis. And we talked and sort of went, "What is that? Like, who gets that?" And all we could think of was Patrick Swayze. Mm-hmm. And anyway, um, because there was distance between Melbourne and Queensland, and [00:12:00] it's this diagnosis again that came out of nowhere, the information that they had received was, you know, that she had a return to work plan.
She was a primary school teacher. She's going to have treatment. She was going to be okay. And then it quickly deteriorated, and the weekend that we knew that Paul had something, but we didn't know exactly what we were dealing with, um, over the course of, like, two or three days, they basically got told that she's not going to make it.
She's close to dying. They were trying to get, um, approval to fly up to Queensland to say goodbye to their sister. Didn't come through in time, and she died on the Saturday morning. So that was unfolding as we were trying to understand what was, what was wrong with Paul.
And then, , my girlfriend asked me to go to her sister's funeral, which was online. They couldn't even get [00:13:00] up to Queensland quickly enough, you know, the approval process to even be there. And so I just remember that I took Paul to hospital. They first of all decided that he should have a colonoscopy. Because of his sister's experience, they thought that it was probably going to be, bowel cancer.
Mm-hmm. And I remember sitting in the car because I wasn't allowed to go in because of COVID, and we'd had to go through this... You know, he had to go and be tested and then we had to go home and isolate, completely isolate. No visits to supermarket. I mean, we were all wearing masks and everything at that point in time, but complete isolation.
And I remember sitting in the car watching my friend's funeral online, and then I got a phone call from the, um, from the doctor, and he said, "It's not bowel cancer." And I felt this sense of relief, and I just thought, "Oh, my God, it's all just been a massive mistake," you know? And I said to him, "Well, [00:14:00] that's good news."
And he said, "No, it's not really, um, because we think it's coming from his pancreas." And so, you know, having been watching this funeral of my friend's sister, who got nine weeks from diagnosis to death- Mm ... it was like a nightmare was just unfolding. Mm. And, you know, we were devastated, but that nine weeks became like we thought that might be all that Paul would get.
And so after this, um, you know, the colonoscopy that revealed nothing, the next step was he came home, had a day to recover, then I had to take him back again, and they had to biopsy, um, what they could see on the liver to get an actual diagnosis. So I think the colonoscopy was on Monday, the liver biopsy was on Wednesday, and by Friday we were in an oncologist's office.
And it was another situation where, no, I [00:15:00] wasn't allowed to go because of COVID. And I had to-- I think from that moment, I realized that I had to get, like, assertive in, you know, navigating this system. And I mean, now that the time's passed, I can say it, but I had a friend who worked at the hospital where this doctor was, and I said, "I have to be in that appointment," you know?
Like, "He can't go into that alone." And she's like, "I don't care if I have to smuggle you in with my, you know, security, you will be there." And, you know, I guess strings were pulled, I don't know, but I was able to go to the appointment, and we were just told by this oncologist in a very sort of like- brutal way.
And to be honest, we ended up moving oncologists because, um, the bedside manner just did not fit with what we needed, I guess. Um, he basically said, "You're incurable and [00:16:00] inoperable, and the type of chemo that we're going to deliver, the Folfirinox, that could be, really fatal as well." Um, and so when we got that news, we just realized that, well, they can't really help us.
We might only have nine weeks. Now I need to find the outliers. You know, I'm, I, I believe in the fact that yes, there's statistics. I've got an economics degree, I respect numbers, but I also know that there's always outliers. So then I just, um, you know, decided that we had to take this matter into our own hands, so to speak, because the Western medical system wasn't giving us any hope at all.
Sharee Johnson: Mm-hmm. So many threads there, Cherie, about recalibrating and assessing and adjusting and, uh, using your own agency and looking for who the people are who can help you. Mm-hmm. When you're reflecting on that story, what do you feel like were the kind of core [00:17:00] things? The other thing I'm noticing is this immediate bond between you and Paul that you knew you needed to protect your kids.
That was something that became obvious pretty quickly or was already a part of how you operated as a family. What, what were the things when you look back that the two of you were doing straight away to stay, have some kind of buoyancy in this really wild sea that you'd suddenly found yourself in?
Cherie Dear: You know, I think, um, times like this, Sharee, probably really expose the reality of relationships as well.
And like Paul and I, very much loved each other and had deep respect for each other. We were both on second marriages for different reasons. Paul's first wife had passed away, we, uh, we'd come together as mature adults, I guess. And we very consciously decided what sort of family life we wanted because of our, you know, the careers that we'd both had and things like that.
So I guess we were already [00:18:00] fairly consciously, engaged with each other and molding our family the way that we wanted to. I actually went and saw Sarah Wilson speak last night, and she spoke about, um, a young girl in her 30s that wrote this, beautiful poem that inspired the name of her book, I Eat the Stars, and it was about how she got a terminal diagnosis in her 30s and how it made her live more fully.
Mm-hmm. And I think, you know, faced with this absolutely devastating news, in some ways it also delivered some of our best moments because it bonded us, and it just made all the, the peripheral sort of stuff just fall away. And in some ways COVID was helpful for this because we were meant to be staying, you know, within our four walls.
And so [00:19:00] our family was just everything to us, and each other. So yeah, in some ways, like it was the most devastating time, but also the most beautiful and meaningful time as well.
Sharee Johnson: Mm-hmm. And you've also shown us in this, even just in the first week of understanding the diagnosis, the rollercoaster that cancer can be.
On the one hand, "Oh, it's not bowel cancer, great news. Oh, it's pancreatic cancer-" It's worse ... "Terrible news." Yeah. You know? Mm-hmm. Um, this up and down, up and down. Even within three or four sentences with a medical professional, you can be having such a range of emotions. How do, how do you manage that, this rapid changing of, of mood and emotion and thought?
Cherie Dear: You know, I'm, I don't even know how I managed it, because I know, you know, when we first received Paul's diagnosis, and your brain has to do a massive [00:20:00] shift because what you thought your life looked like has completely changed with one sentence. You know, "I've got cancer and it's everywhere." And for the first, I guess it was the first week or so, I would wake up in the morning, you know, and forget- Mm
and not, not, that wasn't my first waking thought, and then I would remember. And it was like a bad movie, you know, being played. You wake up and it's a bright, sunny day, and then the bad movie starts. Mm. And I would just, I would start crying. And then I just decided that if Paul's only got nine weeks left, I do not want that to be nine weeks of misery for him.
Mm. And I felt very strongly that, you know, if there was, there was grief coming, I'm not going to, [00:21:00] I'm not going to live with that grief and make his last nine weeks a miserable time and fill him with despair of how I was going to cope. And I just felt very strongly that it was my duty as an adult and as the person who didn't have the cancer, um, you know, to try and make the best of that situation for him and our children, and then I had to deal with what came afterwards on my own in that time.
So I actually find this terminology about anticipatory grief, I... It doesn't resonate for me. Mm-hmm. And I guess I've always sort of... Well, I came to a realization, I don't know when, but you know, for all of us, every day that we're here is one day less that we've got on this earth. I mean, we've all got a finite number of days, and [00:22:00] I just thought- You know, we need to live in the moment.
I've still got Paul here. I've still got my... You know, we've still got our family. We've still got our deep love for each other. I just need to focus on that. So, I didn't want to do the anticipatory thinking about what I was going to lose. What's the point in, in that? And we both felt like that, that, you know, okay, um, everyone's, everyone's dying essentially.
It's just like when you get a terminal diagno- diagnosis, you get told what your end date is likely to be. Mm. Whereas everyone else is obliviously getting around like they think they're going to live forever. And we were both very cognizant of the fact that there would possibly be other people living obliviously that would die before Paul.
Mm. Not initially when we thought that he might only have nine weeks, but he actually, coped quite well with, with [00:23:00] chemo. Not initially, but he then, went into a period of, oh, we've got past nine weeks, and we were doing a whole lot of things to support his health. But he was sort of actually okay, and so then we started, thinking again, and this, this notion that there might be other people, you know, that might die before him, and they're not thinking about that, whereas we're living consciously.
And then lo and behold, Shane Warne unexpectedly died. And there was that outpouring of, of grief and, you know, the shock and everything else. And before Paul died, he addressed the Hawthorn players and, coaches, it was only, like, two months before he died, and he actually spoke about, you know, "Who would you rather be, me or Shane Warne?
You know, I've, I've had the warning and I've been able to say the things that I wanted to say, and tell my family, [00:24:00] demonstrate to my family what they mean to me. You know, when death comes suddenly, you don't necessarily get that chance."
Sharee Johnson: Can we pick up that point about when you've realized, "I've got to get a bit more assertive here"?
Cherie Dear: Yeah. ,
Sharee Johnson: We have these identities. Paul had an identity as a father and a worker and a footballer, and you had an identity of, you know, the mother and the wife and all the things that you were doing, lots of committee things in, in your local community and so on.
And now you've walked out of the office of the doctor or the oncologist or whatever with these new identities, patient and patient carer and, you know, person in distress. Mm. Um, and then somewhere in there you were able to say, "I've got to get a bit more assertive here. I need to be in that appointment.
Uh, we need to find what complementary therapies can support Paul's health. We need to understand this more than we do now." What does it take, what did it take in terms of energy for you to, to really embrace those new roles of, assertive researcher and assertive finder of information and a person getting [00:25:00] oriented to the health system?
How much energy was involved in that?
Cherie Dear: You know what, Sharee, I, I don't even... I don't know. And I think, like, even though, I like to think about things and I like ideas sometimes I don't know myself where that comes from. I just know, um, you know, that- When something's really important to me, I have the ability to just focus my energy and my attention on that.
And, I guess that's just different personality types. Um, but I'm also-- I'm very conscious of the fact that as adult people, , we need to take responsibility in our lives. And I think, that's what guides me. Even though, , Paul and I were both very pragmatic and fatalist, I think there's a lot of things that are out of our control.
But essentially, [00:26:00] you can control yourself. You can control where you put your energy. You can control what you choose to focus on. And we were both-- neither of us like the whole victim thing. We don't like the battle analogy with cancer, you know, that, that way of thinking. Um, and I think, yeah, that my energy, I guess, just came from the fact that I accepted the responsibility.
I guess it's like in any team or, you know, in an army or whatever, if a soldier goes down, the rest of the, the team, the, the other people have to pick up the slack. And even though my heart was deeply wounded, you know, I wasn't the sick person like Paul was, and we immediately went into, um, "Okay, how do we deal with this?"
And we divided roles and responsibilities. Not even really deliberately, but just-- it was quite deliberate, I [00:27:00] guess, because Paul was a director in an IT company, and Paul was very much like he'd started joking, but not so much joking, I think, before he got this news of you know, I wanna retire and, uh, you know, you, you might have to go and, you know, you can go and get a job for a while.
Because I'd been a stay-at-home mom, we decided that for the type of family life that we wanted, that, um, we needed a home base because we had both had, demanding careers, and obviously we can't escape the fa- the fact that as women we're the ones that grow the babies and give birth and breastfeed and everything.
So it was natural for me to be the one to stay at home, and that just kept, um, evolving because as the kids got older and they had their sporting abilities that started naturally developing and, and, you know, there's always running [00:28:00] around and things to do with that. But yes, Paul was, very much sort of looking forward to being able to get off the earning treadmill.
How do I keep providing for my family? He was not necessarily, um, motivated by achievements, like he didn't have an ego, I would say. Mm. One of the most egoless people I've ever come across. It was purely he was working to provide a, a lifestyle for us- Mm ... and himself. So, you know, he was, he was looking forward to that.
So he just did not wanna spend any of his time that he had left working in that job anymore. So he started extricating himself from that and, you know, working out the practical side of things, the finances, writing down passwords, all those things. And then I just went into how do we help him survive- Mm mode, you know? And just spending hours and hours and hours- I know [00:29:00] that there's like people now, you know, when everyone was doing their own research during COVID and everything, people have questions over what sort of research. But I spent a lot of time online looking for those outliers, looking for scientists who were, you know, discovering breakthroughs, and then reaching out and trying to, find information that would help with Paul's longevity.
Sharee Johnson: So I want to talk to you a lot about, Dare to Hope and the research, but before we get there, you did something extraordinary, the two of you. You documented in film the whole journey of, of Paul's illness, and then you've put it out into the world. This very private experience of your family in very vulnerable times.
What was it that helped you make that decision? That seems like a, an incredibly generous gift to give, uh, the world when you were really, you know, hurting and, and could've just completely shut down with COVID, as you said. You could, you could've kept it all very private.
Cherie Dear: Mm. I think the thing was like [00:30:00] once Paul got over the nine-week sort of benchmark, that really, you know, was such an important thing at the, at the time. It, it made us really... We didn't sit back, you know? We thought we only had a short period of time. But once Paul got past that and he was actually, you know, quite, quite well, I mean, chemo's terrible, but after he got over, the week of chemo and then had a bit of recovery time, he, he, he felt quite well.
And so as time went on, and because of his football career, and that was not something that Paul had spent much time and energy on post-football. He was not someone that wanted to be in the media or anything like that. Um, but once news of his diagnosis sort of was filtering through and we realized that there was interest in his story, and when I came to understand more about how neglected pancreatic cancer had been, it was like, well, [00:31:00] we have an opportunity because of his past exploits, rightly or wrongly, whatever, you know, but it, it gave us a certain platform, um, that we could help make a difference to this disease.
So it started with engaging with, an old friend of the Dear family who has become a friend of mine, um, a journalist called Sue Smethurst, to help guide that, because we did not want to go down that path of Paul being presented as the plucky battler. You know, like we wanted to manage how the story was told.
And so Sue helped with that, and we did an interview with Hamish McLachlan for the Herald Sun. Um, Paul went on the, The Front Bar and anyway, so we knew that there was public interest. And then there was a player at Hawthorn called, Rob Dixon, and he had started a career in filmmaking and then tragically died in a car accident in South Africa.
And his brother Pete had [00:32:00] taken over, um, the documentary making. And I didn't know Pete, but, but Paul did, and so I reached out to him and I'm like, "You know what?" And, and this is the other thing, Sharee, I think when you're- You know, you're faced with, like, death. It made me really brave in a lot of ways as well, because it's like, what have I, what have we got to lose here, you know?
And so I reached out to, to Pete and said, "I want to record, what is happening, with Paul." And it was really with a focus on the complementary therapies as well, because I felt, , and I still feel like, there's not enough, um, respect given to the things that you can do outside of the Western medical system that can actually be beneficial.
Mm. And also how desperate we were because the Western medical system couldn't give us an answer. You know? And so we were forced down that path. [00:33:00] And anyway, I reached out to Pete, and Pete said, "Look, we can't do these things for free." He sent me a fundraising target of $100,000, um, to get a documentary started and said, "I'm gonna leave you, you know, with that target and with a, a camera, and just start recording the moments in your everyday life, you know, that that's going on."
Not, not doing pieces to camera, that sort of thing. It was just record the happenings. And so that's, that's how it started, Sharee. And then I went on the, the fundraising, you know. Like, I need to raise this $100,000. Mm. And it made me audacious, like I say. Like, I just reached out to people and, and said, "This is what we wanna do."
And, you know, we knew that by sharing Paul's story for a neglected, under-recognized, underfunded disease, that we could start to make an inroad into the awareness that pancreatic [00:34:00] cancer so desperately needed.
Sharee Johnson: Mm. Mm. I, I wanna just speak to the listeners for a minute. If you haven't watched, uh, Cherie and Paul's documentary, I really want to encourage you to do that. We'll put all of that in the show notes. Mm-hmm. Um, if there are people listening who are grappling with this, this disease or a cancer diagnosis more broadly, and if there are people treating others who have cancer, there's something to learn in, in the documentary around how families pull together, what families need to do, what they're going through.
But also this exploration that Cherie's describing of looking for the outlier evidence, of looking for the complementary therapies that, that might support the person who's sick. You haven't spoken directly to it, Cherie, but I think there's also this thing of your wider community. You've talked about your friend, uh, that you walk with.
You've talked about now the connections that helped you find the person who helped you make the film. I know that your extended wider family was, was very involved in supporting you. So I think that's the other thing that I'm interested in your [00:35:00] reflections on, about how the community or the support network was involved in keeping you going.
How, what their role was.
Cherie Dear: Oh, I can't speak highly enough of our community and our network and, you know, we made a lot of financial sacrifices for me to be a stay-at-home mum. And I know times are different now, we're dealing, living in different economic times. But it wasn't easy for us to do that, by any means, and, you know, my earning capacity was probably equal to Paul's.
It could have made a significant difference financially to us to have both of us working. Mm. But because we chose not to do that, I'm... I need things to keep me interested and it's, it's just my personality. So even though I was a stay-at-home mum, I got very involved in my kids' school, in their sport.
I was, you know, co-president of our local kinder. You know, I used to take a lot of photos and write blogs and things for the, the [00:36:00] football team for the kids and, things like that. So we had an inner circle, but we also had an extended reach, I guess, just through tho- those involvements. Mm. And so when Paul's diagnosis became public- We had enormous community support and, you know, that, that's very uplifting as well as a human being.
To actually understand the value of being involved, the connections that you make either, close friendships that you build out of, out of those associations or even being able to say hi and doing something for someone, you know, a team thing. So what we got back was a millionfold, I feel, from, you know, what we put in.
And it started with, a lovely school mum friend who, um, very efficiently organized this meal train. [00:37:00] And we had meals just being dropped off at the front door, you know. And I think that's an important thing, like when you're dealing with what we were dealing with, and I see you smiling and nodding, you don't wanna open the door necessarily and have to put on the happy face and go into, "How's things going?"
Well, I don't want to give you all the details on that, you know? So this ability, some people might need that, and I guess that's the thing. It has to be worked out on a, case by case basis. But we had an esky at the front door. The food was just dropped off in containers that didn't need to be returned, you know.
It was done so well, and it was a lifeline to us. And I had another group of close girlfriends, um, we call ourselves the Ws, the Wild Wonderful Women who walk, because it started as a little walking group and, you know, we don't walk very far anymore. It's probably more a Wild Wonderful Women who drink wine.
Um, but they took over the school lunches. I mean, any [00:38:00] mum that has had to do endless years of multiple school lunches, like that was just a nightmare. So they relieved us of those things, and it took a while for us to work through life insurance, and that's a whole other story. Um, we had another group of friends that, like, gave us financial help,
Paul had been working on, a renovation at the back of our house with one of my sons who is now a qualified builder. It was their project that they worked on together. And like, we didn't ask, we never asked for things like that. But they, um, came together and they paid to get things finished. You know, paid for, you know, blinds, a television. I mean, they were so generous. And I guess the generosity that the community extended to us, you know, is also what motivates me now to give back to the community by being a volunteer [00:39:00] of, you know, volunteer CEO of Dare to Hope. I really believe in the value of community and giving back when, when you can, and I think whatever you give in these ways always comes back, um, a million times more than what, what it costs you to give.
Sharee Johnson: Yeah. Yeah, absolutely. And yes, you did see me smiling. There's so many ... Our listeners know that my husband Tim passed away of cancer, cholangiocarcinoma, um, 15 years ago. And so, uh, yes, y- you're bringing back all of those memories, this, uh, insight that the people around us sometimes have that we might not want to talk every day when the food's dropped off or every single day about what's going on.
We had a whiteboard at our back door where people were dropping food and so on that said, "We're having a quiet day today. Thank you so much for visiting us, but we, uh, we won't come out to say hello." And so, you know, we would just had a way- Oh ... of communicating like that- Mm ... so that people knew. Mm. Um, it wasn't personal.
It wasn't, we weren't trying- Yes ... to hide or avoid [00:40:00] anybody. It's just that- Yeah ... how we were managing our energy and what we needed to do. And you're also reminding me when you're talking about how brave and audacious you felt. I found myself lots of times since Tim passed away saying to people who are having a cancer experience, "This above all times is when you can do exactly what you want to do.
The community will accept however you behave" just to- Yes ... not to say that I want to promote, you know, poor behavior. No. I think, you know, we, we, we, our experience at least was we just had such clarity about what our values were and the one or two things that were gonna be above all else in terms of priority.
And it's, you know, in some ways I feel like wouldn't it be great to live your life with that crystal clarity all of the time? And some, some days I can achieve it. I wouldn't say every day by any means.
Cherie Dear: Can I just say something there, Sharee? Yeah. Because I think it's really important, right?
Because it did absolutely give us clarity. It strips away all the, you know, the peripheral noise. And we even just found ourselves, you know, [00:41:00] because Melbourne was in and out of lockdown, when we were then able to go back into the community, you know, sometimes we'd just look at each other when we were listening to conversations that people have and or having with us, and it's a conscious reminder to me now that, you know, if you can be focused on a complaint about, you know, something your neighbor's doing that's annoying you or these things, I just think that's a luxury. You know what? Like, if that's your biggest drama in your life, you're not dealing with a terminal illness- Mm
or the anticipated death of someone that you love very much, you know? And so now that it's nearly four years since Paul died, and life goes back to normal in an extent- Mm ... sadly, I, you know, have to pull myself up at times and remember that this is the essence [00:42:00] of life. Mm. You know, what we learnt when we were going through that with Paul.
And so it's, it is a gift in some ways, you know? That, and if you can manage to remind yourself of that, and it's like what you said, some days it's harder than others. But it absolutely is, is a gift in that way, and that's what I feel like I still try and embrace that courage. And, and it's actually, I think, well, I've survived the death of the person who I love most in the world, you know? My parents, my children, but you know, Paul and I loved each other very, very much and, and that, the worst thing that can happen to me, or one of the worst, um, has happened, you know? Mm. So anything else that, that might come along- You know? I'm not scared of making a fool of myself or, [00:43:00] you know, whatever. I'm just, I just think, "No, I'm, I'm going- I've survived the worst.
What, what could be worse?"
Sharee Johnson: Mm. Yeah. And all power to you.
Cherie Dear: Thanks, Sharee.
Sharee Johnson: You, you, are broaching on one more thing before we get to talking more about pancreatic cancer, and that's this identity shift of being a widow, to being in this state of loss or grief or this new, experience, this new part of life. I remember when Tim died feeling like I'm the youngest widow in the world. I was 41. Yes. I clearly wasn't the youngest woman in the, widow in the world, but that was the feeling I had. Mm-hmm. Like, what is happening? How could this happen? Mm. Can you just share a little bit about any of, any of that part? The, this idea of being on your own or the grief or the loss. Just, just whatever feels useful here in our conversation, thinking about recalibration and healthcare professionals and going forward with hope. What's striking you just now?[00:44:00]
Cherie Dear: You know, I think the thing about that is essentially, Sharee, and I think you know this, it's, it's something that you have to grapple with yourself.
Mm. And, you know, I did not, do not want to be a widow. Mm. I remember, like, one of the first, first things when I really was consciously thinking about it, and it's ridiculous but it, you know, it, it demonstrates, I think, the challenge. Like, I had this red dress that had, like, quite thin straps, and I used to just wear a red bra underneath it because, um, you know, it would camouflage, like, the thing.
And then I went to put on this red bra and I'm like, "Ooh, I'm a widow. Does that look too..." And I thought, "Oh my God," like, [00:45:00] how I now present myself in the world, you know, is something that I'm conscious of, and I was conscious of that. You know, this, I don't know, almost an expectation that you had to somehow, assume this more demure or something identity.
Mm. And I, I suspect that, you know, there's other women that go through that. When you've got a husband by your side, how you present is... You know, you're ... We were a team, and everyone knew how much we loved each other, so I never used to second-guess myself in that way. Mm. Um, but I became aware of the fact that now I'm by myself.
I'm a woman by myself in the world sort of thing. And initially, um, my friends were really thoughtful and, you know, even just... I know, I know people think [00:46:00] that I'm very confident and self-assured and all of that, and yes, I can be, but I don't necessarily want to walk into a, a party or, or, you know, a function by myself.
Mm. You know, it's very different to walking in when you know that you've got a home base. Like, you know, I could go into any room, and if I, there was, you know, no one to talk to or whatever, I could go back and stand by Paul's side and either join in his conversation, talk, or talk to him. Very different being solo.
Mm. And initially, you know, my friends would say, if we had things on, "Do you want us to come and pick you up?" You know? And I really appreciated that thoughtfulness. Mm. And I love my friends, but as time's gone on, you know, I think your being alone and being the single person, it just becomes the norm, and I think that this is probably true for a lot of other people.[00:47:00]
In some ways, it gets harder as more time goes on because you being the widow is just the way it is now, and the consideration and the thoughtfulness- People have, other tragedies have occurred, you know? And I'm not saying that the attention should stay on us, it's just a constant readjustment. And I guess as time goes on as well, there's more of an expectation. And I think that whether this is our perception, but I definitely think it's a reality, that there's a perception of, "Oh, well, you have to get over it and get on with your life." Mm. I think people are less willing to sort of cut you some, some slack. There's, there's a time where they think, "Oh, well, you're grieving and-" You know, they're very sensitive to that.
Yeah. And then as time goes on, that, that changes. Yeah. And yeah, that, I think that's when things get difficult.
Sharee Johnson: Mm. I think you've articulated a lot about... That's really resonating [00:48:00] with me. There's lots of things there that- Mm ... that, you know, we could talk about that probably for the rest of the podcast if we want, if we want to.
Cherie Dear: Maybe we need to do another one on, on widow life and, you know.
Sharee Johnson: Let's, let's talk about hope. You know, you've done this, uh, extraordinary thing, and there's been some very hopeful news in pancreatic cancer in the last week or two, which we'll- Yes ... touch about that too. So you know, you started fundraising for your documentary, and then this thing grew its own life in a way. Mm. And I, I just love so much, Cherie, that you've called your charity Dare to Hope, and I want to talk about hope quite a lot. But- Mm ... can you tell us about how you came to that name and how you, you know, these two words, this word daring, like, let's be daring. Let's- Mm ... do something completely- Mm ... on the edge. And this idea, hope, that people often talk about false hope in medicine. So l- let's, let's dig in there a little bit. How did you come to the name?
Cherie Dear: Mm. So, we ended up having an extraordinary situation with Paul because, you know, that first oncologist told us, "Inoperable, [00:49:00] incurable." Mm. And we accepted that.
And, um, then as time went on and Paul sort of was surviving and, you know, doing quite well, and like I said, we did a lot of complementary therapies. And we ended up changing to a, um, a second oncologist who was a friend of the family. Mm. And when Paul was first diagnosed, and these things are so important and so valuable, we didn't know Emma.
She was a friend's, sister, and we'd met her a few times through football. Um, but my friend reached out and she said, "Look, Emma's heard about Paul's diagnosis. She's an oncologist. If you've got any questions, she wants you to, to feel free to call her." And it was fabulous because, um, I think Paul had only just had like his first chemo, and we thought that he was gonna come home and be vomiting and be sick and all of this sort of thing, and he [00:50:00] wasn't.
He came home and I felt like I had a newborn again in some ways, like this fragility. And he went to bed, I darkened the room and all these things and had the bucket by the bed and a towel over the sheets, you know. And I went back a bit later and he's just sleeping. Anyway, he slept all that night, and we woke up in the morning, and I'm like, "How, how are you feeling?"
He goes, "I'm fine." Anyway, then I got this message and I got Emma's number, and I rang her and I, and I said- You know, we've just had the first night and he's okay. Does this mean the chemo isn't working? You know, like you think if he's not responding the way that we were warned he could, maybe it hasn't actually hit his system and it's not going to work.
Anyway, she really was very reassuring. Um, he was about to give himself the injection, um, that stimulates the white blood cells, and she said, "Have you been warned that that can actually cause some really severe side effects?" And I said, "No." She goes, "Well, you probably need to be [00:51:00] warned that it can." And because we had this concept that we were running out of time very quickly, I'd organized a family photo session the next day.
Anyway, poor Paul, like he was very sick from that injection. Um, couldn't postpone because he, you know, we didn't know how he was going to respond. Anyway, just being able to speak to that generosity of sharing her details. Anyway, Emma took over Paul's treatment, and she also had, um, suggested, and we valued this suggestion because she was an oncologist working within the system, to go to a place called the Melbourne Integrative Oncology Group.
Um, it's run by a lady called Tanya who, um, was basically gave us guidance on how to support Paul's system to cope with the rigors of, of chemo and also what other types of therapies had evidence and evidence basis for success. [00:52:00] So, we were doing that. Anyway, so Paul was coping quite well, but then, it was around May...
He was diagnosed September 2020. May '21, he started vomiting blood and obviously that was incredibly distressing for all of us. And it took a little while, um, for it to be diagnosed, but he had gastric varices, and the tumor had caused that. The blood had rerouted.
Anyway, we had connected with Mehrdad Nikfarjam (surgeon) by this point in time, and Mehrdad had looked at Paul's scans. We actually went to see Mehrdad because he'd published on medicinal cannabis, and that was something that we were very interested in. Mehrdad had looked at Paul's scans and said, "Oh, I might be able to operate on you one day." And we just thought That's just not gonna happen. We had accepted that he was inoperable. Um, anyway, I contacted Mehrdad, and Mehrdad [00:53:00] diagnosed these gastric varices and said they need to be operated on. Like, you know, he's not going to survive, anyway. Paul could not get his head around an operation.
We were getting ready for Mehrdad to do some exploratory sort of, um, can't remember what it was called, to have a look at what was possible, if the cancer had ... How far it had spread or whatever. Anyway, the morning, I think it was, that he was booked in for that or the day before, he had a massive, um, explosion of vomiting blood at home.
We had to get him to hospital urgently. It was terrible. And- He went to the Alfred. They told me to get the children out of school. Um, I rang my sister-in-law, Paul's sister, who's a palliative care nurse, and she sort of made me realize how grave things were. Anyway, um, Paul eventually got transferred to Waringal [00:54:00] Private with, and Mehrdad operated on him, um, to save his life essentially, because he was bleeding to death.
So Paul got this surgery that he had been told that he would not have. So whilst Mehrdad was addressing the gastric varices, he did a distal pancreatectomy, um, he removed his gallbladder, his spleen, um, parts of the liver. And the histology of that operation, like when the tumors were sent off, we were told that Paul had had a near complete response to chemo.
I say a near complete response to treatment because we were doing so many other things. Who knows what actually, created the, the outcome. Anyway, after that happened, Paul and I did an interview, um, on the television, and in that interview I said we didn't dare to hope, you know, that Paul would get an operation, that he would survive this [00:55:00] long.
So that was where the name came from. And you know, if you look at Dare and if you think about dear, you know, there's, um, our name in that. The, the O and the P in Hope looks like a C and a P, if you look at it closely. So yes. And I think, you know, to answer your question about hope- You have two choices in life.
You know, you can take things on pessimistically or you can be optimistic. And we never embraced hope as an airy-fairy sort of like, "Oh, we're just hoping for the best." You know, if you do your research on, on hope, hope is a strategy for acknowledging that, you're actually being honest about what the outcomes could be.
You're not hiding from reality. It's not airy-fairy. You know what the worst possible situation could be, but you're actually hoping for the best. ... That very much [00:56:00] sums up how we dealt with Paul's diagnosis and how I, you know, continue to live my life. It's, you know, we know the reality of things, but I choose not to put my energy into the what ifs, the what could go wrong or the, the negative side.
It's like, well, I choose to move forward with positivity.
Sharee Johnson: Mm. Here! Here!. The scientific literature, as you're pointing to, or the Hope Theory by Snyder says that wishful thinking isn't a part of hope, that hope's actually a psychological conscious thinking process.
Cherie Dear: Exactly.
Sharee Johnson: It's, it's not really an emotion as such. It's more about consciously thinking using your cognitive capacities-
Cherie Dear: Absolutely ...
Sharee Johnson: to choose. So I think you've described that beautifully, Cherie
Cherie Dear: You know what I love also, Sharee, about that? Um, it's... And I don't know whether if it was actually Snyder, but the whole hope is rainbows for the mind.
Mm. And it is. It's like, yes, it is a conscious decision, and it is [00:57:00] a cognitive decision if you're, you're really living with hope. Mm. Um, you know, because I'm not into toxic positivity. No. You know, that whole like, "Oh, we'll be okay." Uh, probably not, but we are choosing to live hopefully. Mm. And so choosing that and, you know, what that does to your psyche, I think, is like looking at a rainbow.
Sharee Johnson: Mm. Yeah. Yeah, it's, it's, uh, it actually activates your motivation. Yes. So we can hear that in your story, the agency that you were able to- Yeah ... bring. You know, the action, the active things that you were doing on the things that you had some control or might be able to influence. Um, wishful, magical thinking is, is on things we have nothing to control, so Yes.
So, so you created Dare to Hope. You've, now had these, these huge matches. I think you had 85,000 people at the game this year. Mm. And, and your intention with Dare to Hope is to raise awareness about pancreatic cancer, but [00:58:00] particularly to, to funnel that money that you're raising into research.
Can you tell us a little bit about that, Cherie?
And, and maybe we should say that there are nearly 4,000 people in Australia diagnosed with cancer every year. No real material measurable change in the treatment options and the outcomes for 40 years at least. Probably much longer, but at least for 40 years- Mm
no real change. What are you hoping to achieve with Dare to Hope?
Cherie Dear: Just to go back to the, the matches and, and also the stats. There's over, um, 4,800 people diagnosed a year. Mm. Uh, the, the stats for 2025 was, um, an anticipated 4,039 people actually dying of pancreatic cancer. Can... So you can see, you know, the diagnosis and the death, there's not much difference, which is appalling really.
I never anticipated that I would be doing this. I had no intention of, um, [00:59:00] running a charity. Um, it's come out of the, the opportunity that the Hawthorn Football Club have given us really, and Paul's association, and now I've got Calsher and Maya both playing at Hawthorn.
So this was not how I thought I'd be spending this part of my life, but, you know, recognizing how under-recognized and neglected pancreatic cancer has been, and the opportunity given to us because of, um, Hawthorn, I felt like I had no other choice but to maximize that. Because it's a unique opportunity that I have personally been given, and because my children are older and not completely dependent on me,
I felt like I'm... not only have I been given that opportunity, but I'm, I'm also personally capable- Mm ... and have the capacity to maximize [01:00:00] that. So, you know, that's been my intention. Like I said, I value, , giving back, and not everything for me in life is actually about personal financial gain. So I feel like I want to be able to maximize this opportunity by also- giving my time to this opportunity.
And as a result of that, and the people that I've managed to, bring along and the support I've had, you know, is just phenomenal. And everyone's doing it with the best of intentions. No one gets paid. So that's making us really effective in being able to, direct $0.93 out of every dollar is actually going to fund medical research.
And, being a pragmatist and , you know, having gone through what I've been through, um, support is obviously important in these situations. But if we don't fund medical research, we're just supporting the status quo, [01:01:00] and we're not going to actually change outcomes. And I know how dire a pancreatic cancer diagnosis is, and I always like to say in these situations, if you're listening to this and you're living with pancreatic cancer, please focus on being the outlier.
I don't want to dash anyone's hopes that they can survive this disease. I still believe, and get online and have a look. There are people that have defied stage four diagnoses of pancreatic cancer, but unfortunately, it's not, not the norm and we have to be realistic And, you know, our theme this year was hard conversations, and it's actually a value of Dare to Hope because Paul never shied away from the hard conversations.
And, you know, it's holding hope, but also being able to say, "No, this is the reality, and unless we confront it and are prepared to do something about it, it's not going, going to change." So [01:02:00] yes, I've got enormous gratitude to Hawthorn and to the wider AFL community. The game, the Dare to Hope match is between Hawthorn and Geelong.
Geelong lost, Michael Turner, who was one of their champions of their team, and so they've supported us as well. It's through the two clubs and then the wider, um, AFL community because there's obviously people who barrack for other teams who have lost people to pancreatic cancer. And I'm just so pleased that, you know, it was Paul that was recognized as the football, hero. But we've really wanted to extend that opportunity for recognition at the Dare to Hope match to anyone that's lost their life to pancreatic cancer. Paul was no more deserving of being mourned and everything else because he played football than anyone else, and that really came home to me when Dad died four months after Paul.
You know, the kids [01:03:00] sort of, um, said when Paul died, "Oh, you know, we didn't realize Dad was so relevant." You know, because his football career had, had been well before they were around and able to understand the magnitude of, of what he achieved. Um, but then when my dad died, you know, the... it was family and friends that acknowledged that.
But it's like, well, his life was less, no more than what Paul's was. Mm. And we want to hold these heroes up. But anyone, you know, any life that's lost is, is important. So, I really am proud of the fact that the Dare to Hope match is also providing, uh, a time and a place for other people who have experienced loss through pancreatic cancer to feel seen, and to have their opportunity, um, to acknowledge their person who died as well.
Because as we know, Sharee, when, you know, there's that outpouring of grief and [01:04:00] then people move on. And to be able to, you know, continue to, to honor the person that you loved and recognize the loss, I think is really important to the healing process as well.
Sharee Johnson: Yeah, for sure. I think the, the imagery even of the field the silhouette. Yeah. Yeah. The fie- the field of silhouettes where people are actually naming their people. Yes. So it's very moving to see that car park, that whole field outside- Mm ... of the, of the ground outside- Mm ... the MCG with all of these silhouettes representing, you know, and that's obviously only a portion of people who died.
Cherie Dear: It is a portion. Yeah. We put 400 up, a 10th of the 4,000. Just for strategic and logistic, reasons. But it really is to say these lives mattered. Like, most people don't get the 22 months that Paul got. And the shock diagnosis, and then the shock loss, and then, you know, life moves fast, and someone else's tragedy takes over from yours.
You know, they [01:05:00] just don't get the time and the recognition. And that's why pancreatic cancer has been swept under the carpet because, you know, it comes on and people die quickly, so communities don't even get time to mobilize to hold, the lunch that's the fundraiser, and the person gets up and speaks because they're too sick, and then they, they're gone.
And people, we're not good at dealing with grief. I mean- Not at all ... we could have another podcast about that, Sharee. Yeah. Absolutely could. Um, we're just not. And so once someone has died- that momentum is often lost.
Sharee Johnson: Mm. I, I think it's less than 2% of cancer funding that's going to what's called rare cancers, and pancreatic cancer seems to be in that basket.
Doesn't seem that rare to me.
Cherie Dear: It's not rare, and it's actually been reclassified as a rare cancer. Okay. And that's why, you know, I'm really, motivated to make sure that it doesn't just get wrapped up in that because then we get, um, diluted [01:06:00] focus, and that's with no disrespect to, the people- who do die of other low survival rare cancers. But pancreatic cancer is our third deadliest cancer. It needs to be, and I wrote a letter to Mark Butler (Federal Health Minister) yesterday because I'm concerned about the latest, um, research strategy and the budget. Pancreatic cancer seems to have fallen out of focus again, and I can't have that, Sharee.
I mean, what really motivated me to do what I'm doing is, when Paul died- Dad had been diagnosed, so I was, dealing with Paul's loss, and then dealing with how do I best support my dad. Um, and then dad died four months later. And before dad had died, I actually got online because I'm like, how can this supposedly rare disease be striking my family twice, you know, in this short period of time?
My girlfriend lost her sister, and as is the [01:07:00] way of these things, other people say, "Oh, it happened to my uncle. It happened to my dad." I discovered I've got numerous friends who also lost their dads to pancreatic cancer. Mm. But, you know, being cancer illiterate beforehand, people go, "Oh, he just had cancer everywhere."
Even now, people go, "Oh, now he's got liver cancer." It's like, no, he actually- Mm ... still has the same primary. It's, it's metastatic disease. We have such low literacy as we did before it, it, it struck us.
Sharee Johnson: And we did, and we did too. It doesn't matter how much education you have we don't think about the things that we don't need to think about, you know?
So- Un- until it's- Until it happens ...
Cherie Dear: until it's forced on us. Yeah. Right. But it was the actual, it's the injustice of it that has motivated me. If Paul had have died in an accident or something like that, I don't think I'd be trying to change the world around that.
But it was actually when I got online and I looked up the statistics when dad was unwell as well, and I realized that this [01:08:00] cancer is killing more people every year than breast cancer, prostate cancer, you know, more than double the, number of people dying of brain cancer, five times more than MND, road trauma, all these things.
I was- Just I was shocked, and then I was outraged, and it's, it's that injustice- Mm ... that has actually motivated me- Mm. Mm ... to try and change that. Why do we keep being swept under the carpet? And I feel motivated, you know, not to allow that to continue.
Sharee Johnson: Well, I think that you're showing yourself to be a force in that regard, Cherie. And I hope that, the people listening today join you in this, in this mission.
Cherie Dear: Me too.
Sharee Johnson: Can you tell us a bit about the research that's happening? You've funded these, these, uh, young researchers, and I know you've... We talked last week and you told me that being young researchers is also important to you.
Can you tell us about the research arm of the work you're doing?
Cherie Dear: Absolutely. Well, like I've already said, I firmly believe, and Paul was the same, [01:09:00] research is the only way that we're actually going to, change outcomes. And the other thing that I've become aware of now, I'm really fortunate that, one of the people on our board is an old school friend of mine she's now the dean of, one of the schools of science at La Trobe Uni.
So she's seeing firsthand, these young people that come to uni and do science, and then it's so difficult for them to establish careers in scientific research because unfortunately in Australia, we just don't give enough of the government funding to, um, scientific research. And the statistics for the success of the, NHMRC, grant process, it's like some say, um, 8%, some say 10%, whatever, it's too low.
And I think about when I was at school your really smart people went into law, or they went into [01:10:00] engineering, or medicine or science. And those other career paths you can establish yourself and be guaranteed probably a quite a nice financial return and, you know, a, a career path that you can build on your success and keep building.
These scientists are continually reapplying for their jobs, and that outrages me as well. And then to look at the situation with pancreatic cancer, part of the reason why we're not really successful with the NHMRC grants is because it's a ranking process, and if you can't get your first bits of research off the ground, you can't rank.
These early to mid-career- Scientists, they're the ones that we need in this field, you know, building their own capacity and building the future capacity. And it's so difficult for them. With Robyn's input and guidance, it helped us see that that's where we can really make a difference.
And so [01:11:00] by funding these, um, fellowships that are now worth around $400,000, we give them three years to really focus on the science. And the most recent one that we've funded is at the Garvan, and we've funded a young, He's just finished his PhD, and so now we're giving him this postdoc fellowship.
And he's working in a lab with, Marina Pajic, and Marina is an absolute shining light in the world of pancreatic cancer. And I first met with Marina and I said to her, "Why did you choose pancreatic cancer?" You know, because it's so hard and, to get funding and to build a career. And she said, "Because I like hard."
And I'm like, "You are speaking my language." She just impressed me so much with her dedication. She was successful in receiving a collaborative grant through the NHMRC looking at disease resistance. So there's a breast cancer arm and there's some other arms as well, but she got pancreas.[01:12:00]
But what Robyn, guided us to understand was, let's not give just more funding to Marina because she's quite well-funded. Let's fund a young scientist to help her with that work. So by doing that, we are really compounding the impact of the grant that she's received. So we're being very strategic.
We've got businesspeople on our board as well, so we're really trying to look at this how can we make the biggest impact with the money that we're able to direct? And so we're really proud of,, that strategy, and we've got enough money from this year's match to fund a third fellowship.
So we're going through the process at the moment of, getting ready to announce that. So, yes. I feel, as a mum as well, I feel really proud of the fact that we're trying to address one of the challenges for young people, you know, to give them some certainty and support in establish [01:13:00] themselves in, in an area that's, that's been neglected.
Sharee Johnson: It's so uplifting to hear the individual impact. You're very aware of the individual impact, obviously, of, of this disease but this systemic view that you're having, how do we affect the system and the structure so that there's something beyond any individual thing that you're doing that's gonna continue the work and you use the word compounding there. I think that's a really great way of describing what you're doing.
Before we finish, Cherie can we just talk about this new ... Well, it's not a new drug, but the trial and the announcement that's- Mm ... in the last week. Um, you know, every year oncologists from all around the world go to Chicago. I remember, when Tim was having his treatment, oh no, we couldn't do something or other at that time of the year because everybody would be left down- Chicago ... in Chicago. Mm. It's this huge gathering of people who are, thinking about and working with people who have cancer. And this year, , announcement of a trial progressing to the next level and, and effectively giving people nearly double the time that they might have had.
Can you tell us a little bit about your view [01:14:00] of that? I wanna point people to the Dare to Hope, website. There's some- Yeah ... couple good articles that you've, put up in the last week or so telling us about this drug. It's called daraxonrasib. I don't know if I'm saying it right.
Cherie Dear: Yes. Yes, I ... Well, that's how- Yeah I say it as well. Took me a little while to get my tongue around that one. But- Yes ... um, it's an amazing breakthrough, Sharee. So it's been a really bittersweet week for me. And when sort of the news was coming through and everything, I only had five hours sleep the other night because I was really wanting to get those news articles up but also, you know, write it in a way that- a, a carer and a patient can understand that.
And also, like I said, , hard conversations are part of our value system, and this is an amazing breakthrough, and it's got, ... It's so promising because it targets a KRAS mutation. Over 90% of people diagnosed with pancreatic cancer have [01:15:00] that mutation. Paul had that. I haven't checked Dad's, genomic profiling, but I'm sure that he must have had it as well. So it would've been something that helped them. And Michael Li, who is our first fellow that we funded, he ex- he described it as being, um, like to pancreatic cancer as, um, Herceptin was to breast cancer. Now, I'm not particularly well-versed in that, and that sounded very impressive, but I'm like, "Well, what does that actually mean?"
I looked into that, and, Herceptin actually, it was like with daraxonrasib, it wasn't reliant on chemo. It was a targeted therapy, and that's what's so exciting about, um, daraxonrasib, is it's not chemo-based. It's a targeted therapy. And KRAS was considered undruggable, so the fact that they've made this breakthrough, you know, I really do believe that we're on the precipice, and the evidence, the information coming out of ASCO (American Society of Clinical Oncology) supports [01:16:00] that.
We're on the precipice. We can make enormous breakthroughs with pancreatic cancer. But for those of us who didn't get that opportunity, it is bittersweet. And after only less than five hours sleep, - I then got the information, that Jreissati Center at Epworth were going to have the trial. And when Paul, when we're in this period where he'd recovered better than what we thought or responded better than what we thought, um, we were one of the first people to go to the Jreissati Center.
We went and, um, met with Carolyn Le, who was the lead researcher, and a nurse called Jo Crowther, who's since retired. And I looked back at the photo of Paul and I with them, and then I ended up in tears because- You know, I'm focused and driven and, but every now and again recalibrating, I guess, Sharee.
You know, I need to take a moment and remember, [01:17:00] and allow myself, you know, to feel those, those feelings. And it really made me miss Paul. Mm. But it also, you know, I'm really proud of, and I think he would be very proud- Mm ... you know, of what we've continued to do.
Sharee Johnson: Oh, Cherie, I feel proud of you- ... and we have only recently met.
Cherie Dear: And so, yeah, it's, it's monumental, but it just, you know, it's just driven home to me the fact that we can't let this slip now because, you know, we're on this precipice. And I've met with David Thomas as well, of Omico, and I would direct people to their website because you need genomic profiling before you can even potentially participate in these trials.
If you don't know that you have the KRAS mutation, you can't go on that trial. So you have to go to Omico, and you have to [01:18:00] access that system to get that genomic profiling. And, you know, we had that done with Paul, not through Omico. We paid for it ourselves at that point in time because we weren't eligible for whatever process they had running.
Yes, you've got to do that. Then it was sort of bittersweet 'cause the trial that's coming to Australia is for people that have not been treated for pancreatic cancer. And so then my heart goes out to everyone who's in Australia living with pancreatic cancer now.
They're not going to be eligible for that first trial. Yeah. The people who are going to be eligible are probably the people who right now don't even know that they've got pancreatic cancer. So there's all these hurdles with this, but I'm confident from my discussions that, um, the expanded access trial will be hot on the heels of this first trial.
If you don't have genomic profiling, go and get that done because I spoke to someone yesterday who's gone through the process, and it's eight weeks since he had it, and he doesn't have his [01:19:00] results. Mm. So yes.
Sharee Johnson: Get on with it.
Cherie Dear: Would be my advice, absolutely.
Sharee Johnson: Yeah. So just in the interest of time, Cherie, we need to start wrapping it up.
Mm. I think there is clearly a whole lot of hope, and, uh, that hope is really, amplified because of the daring that you and others like you have. We're just so, lucky, I feel so deeply grateful that you are doing the work that you're doing.
Can we do a quick little lightning round to finish off? I wonder if you want to say something to the young scientists who are wanting to do this kind of long range work that takes a long time. What would you want to say to them?
Cherie Dear: I would want to say to them that I think that, the scientific community, I mean, I know there's, um, associations and organizations that, uh, saying to government, we need to do better. But I think, they have to work out what's their strategy if they want a career in this field. And also, don't be passive. You know? [01:20:00] Like, even now that I think the word is getting out there that we're funding these fellowships, we're getting approaches, now from, um, universities and things that know. But be brave, and take, take control as well yourself, and reach out and find out how you can best position yourself- to get that, um, opportunity if it arises. And, and do your research and work out where are the labs where it's happening. And, you know, I think, yes, my, my way of dealing with life is personal agency.
And so as much as I, I would like to say to them, "We need you in the scientific community," you also need to, if that's what you think you wanna be involved in, do your research and don't be afraid to ask for support either. Reach out to the people that are leading pancreatic cancer research and see if they can guide you on [01:21:00] what you might be able to do, to get your foot in the door.
Sharee Johnson: And you've spoken already a little bit to, um, people who ha- have this journey happening in their life, people with pancreatic cancer and their families. Is there anything else you want to say to them?
Cherie Dear: Well, like I said, I think it's always important to, maintain the hope that you can be the outlier. But I think the other thing too, Sharee, is Paul and I were realists as well, and so we got our affairs in order so then we could sort of live our best lives. And we fought the whole, well, the majority of the time that Paul had left, but I think that there's a time to fight, and there's a grace in knowing when to surrender.
Mm. And after Paul died, I saw a psychologist who specializes in grief, and she had watched our documentary, and she said to me, [01:22:00] based on what she saw in that, I think that, you know, Paul had a good death. And that's a hard thing to say, but it's-- we're all going to be in that position at some time, and there is such a thing as a good death, and there are things that you can do, um, to prepare for that.
And I would encourage you to have the conversations while you still can. And her advice to me was that she thinks that myself and the children have, you know, been able to cope because we have uncomplicated grief. We were honest, we were brave in confronting it, and it's left us out of the worst possible situation in a place where we can move forward, I guess.
Sharee Johnson: And what about the health professionals, Sharee? Is there anything you want to say to them as we bring our conversation to a close?
Cherie Dear: I've thought about that, Sharee, because know you were going to ask me. And, you know, first of all, I [01:23:00] want to say that I recognize that they have a really tough job.
And I don't know, and I'm going to actually interview Michael for our, um, website. Like, what's it like for you having to deliver this terrible news to people? Mm. But I think from our experience, you know, being able to demonstrate that you've got empathy for that situation. And I guess it must also be a situation of trying to really understand what each individual and each individual family, what they need.
I spoke to, , a young, researcher. I'm involved with another, , dietetics, project, and she lost her mum to breast cancer. And I think that they felt that they weren't told honestly that the, their mum could die. It was never actually really addressed with them. And so there's anger and, you know, [01:24:00] um
And I think that that must be difficult. But I encourage health professionals probably to engage with you, Sharee, to be able to work out what is the best way of understanding what your actual patient and their family, what they need. But that leading with empathy, um, that made an enormous difference to us.
And the, the health professionals that, that we felt really supported by, even though they couldn't offer us a cure, from David, our GP, to Emma, to Mehrdad the surgeon. Um, we had an acupuncturist called David Wang, , a lymphatic drainage, specialist, Theresa. They were the kindest, they treated us with empathy, not with trying to tell us that everything was going to be okay.
Mm. And sometimes the less said, the better. But just that knowledge that their, [01:25:00] their heart is, is sort of with you is enough. Mm. Well, it was for us.
Sharee Johnson: I think that's just the right place to finish our conversation. We will put in the show notes everything you, you need to know about Dare to Hope, and I really want to encourage you to have a look at the website, start telling people about Dare to Hope.
Talk about, how we can all be involved, and please, if you're able, do, uh, find some financial support for Dare to Hope. Please make a donation. It's very powerful, important work that Cherie and her team are doing for individuals in terms of knowing that they feel seen and heard, but, but more importantly for this long-term, research effort that, you know, you can hear in what Sharee's talking about writing to Mark Butler and thinking about where she can talk to universities for research. Let's get behind her and see Dare to Hope be a big part of making a difference in pancreatic cancer outcomes. Thank you so much for your time today, Cherie.
Cherie Dear: Thank you, Sharee. I've enjoyed speaking with you about difficult topics.
Sharee Johnson: Very hard conversations. Mm. Thank you, Cherie.
Cherie Dear: Hard conversation. [01:26:00] Thank you.
