02: A Working Mom’s Stage 4 Melanoma Turnaround Through A Clinical Trial

You can’t unhear the words “metastatic melanoma,” especially when you’re alone at home and your kids are at school. Paula Ebrington takes us back to that phone call, the moment her body reacts before her mind can even catch up, and the long six-month road that finally ends with a stage 4C diagnosis. What follows is the part most people never see: telling two boys the truth, holding their questions, and trying to stay steady when you don’t yet know what treatment will do.

We talk through the decision that changed everything: saying yes to an immunotherapy clinical trial with Gallipoli Medical Research, guided by Professor Dr Victoria Atkinson. Paula explains what “clinical trial” felt like at first, the fear inside the paperwork, and the intense screening day that determined whether she’d even be eligible. Then comes the reality of immunotherapy side effects, unpredictable reactions, and the strange whiplash of looking fine while your joints ache, your skin flares, and your life keeps moving. If you’ve searched for stage 4 melanoma treatment, immunotherapy experiences, or what a clinical trial is really like, her detail is honest and practical.

Survivorship doesn’t mean the roller coaster ends. We dig into scanxiety, PET scan uncertainty, and the grief that can sit right beside joy when you get more time than you were promised. Paula also shares how community forms around research, from the lab staff who process blood samples to the people quietly “pulling for you” without ever meeting you, and how hope becomes a daily discipline during work stress, life upheaval, and the unknowns that still linger.

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Transcript

Host Miriam Kent 0:03

Hi everyone, I'm Miriam Kent, CEO of Gallipoli Medical Research, and I'm delighted to welcome you to our new podcast, Voices. Tune in as we bring you raw conversations with leaders, survivors, researchers, and advocates across veteran health, medical research, clinical trials, and the broader community. From a Victoria Cross Medal recipient and a mother of two surviving stage four melanoma to Australia's first female three-star Lieutenant General, their voices will transform the way you think about service, leadership, and what it truly means to stand beside one another during life's hardest moments. We have entrusted the master conversationalist Sarah Maxwell to sit down and facilitate these important conversations. Sarah, over to you.

Getting The Call At Home

Conversationalist Sarah Maxwell 0:54

How do you get told that you have metastatic melanoma and that it's stage 4C? How does one even take in that information? Today's guest on Voices had to wait six painful months to hear those dreaded words. And it was only scripting out her son's life milestones that got her through the grueling road laid out in front of her. Paula Ebrington was a 47-year-old working mother who got a rash on her legs, followed by persistent pain in her side, before being asked the biggest question of her life. Do you want to be part of a clinical trial for a new immunotherapy drug through Gallipoli Medical Research's Clinical Trials Unit? Trusting implicitly the guidance of Professor Dr. Victoria Atkinson, she went all in. It was a grueling two and a half years, but Paula's tumor responded immediately, and she was one of the lucky ones. The drugs worked. And four years on, her scans are all still coming back clear. The trials immunotherapy has now been deemed safe for all Australians. And so it has been a remarkable life-saving experience for Paula. And you know what? She was able to sit in the car for her son's driving lessons in graduation, while also hearing her 12-year-old son's voice crack into teenagerdom, which was what it was really all about. So thank you, Paula, for opening up to us today about an experience that many of us fear, to be frank. And yet you've made it here to be able to share with us all. So should we start? Let's go. Let's go. Gosh. So look, had you ever had a major illness before that faithful day? Faithful, fateful. Let's call it fate. They're close, aren't they? Fateful, faithful. That fateful day on June 8th, 2021, where you were delivered the worst news of your life. Like, can you even recall how that diagnosis landed for you?

Guest Paula Ebrington 2:52

Well, I actually had had a um major issue uh prior to that when I was pregnant with my second son. I was 38 weeks pregnant and I actually got swine flu and double lobe pneumonia and ended up in the ICU for a week before I delivered a healthy baby. So I had something big happen in my life prior to this. And honestly, I thought that I'd already had my second shot, my second chance. Yeah. Um, and then this happened. Um, so yeah, I feel like I'm a cat with nine lives, and I'm hoping I don't have to use them all. Um, but yeah, it's almost four years on to the day, and yes, I remember it like it was yesterday. Um still makes me feel sick, actually. Um yeah, and still really emotional. Um I decided rather than to go to the doctor's office to get the results, I thought it would be a good idea to stay at home in case it was bad news. Yeah, wow. And so I took a phone call with those results. And my husband had gone to drop my kids at school. He planned to be back on time to be with me, and the doctor called me early. And so I answered the phone knowing it was him. And yeah, he told me I had metastatic melanoma. And um, he didn't tell me a whole lot more than that. He just said that I needed to urgently get in to see uh Victoria. He had managed to get me into what he described as an amazing doctor. Um, and he'd organized that appointment, and that was really the extent of it. I just knew it was bad. Um I hung up the phone and ran basically to the bathroom and threw up. I was sick, I was physically sick. Um, yeah, and by the time my husband got home, I was a complete mess and yeah, explained to him what had happened. Um and yeah, we were just both shocked and just sat wondering what next. You know, I had two kids. Yeah, it was pretty good.

Conversationalist Sarah Maxwell 5:06

So basically, it doesn't really matter if you've had a hard experience in the past, does it? Nothing really prepares you like that for that moment. I mean, look at your body physically throwing up because how can you even take all that in? And you were on your own hearing the news as well. Oh my goodness.

Guest Paula Ebrington 5:25

Yeah, it wasn't great. Um gosh. And I I just think that yeah, I knew there was something wrong. It had obviously taken me six months to get a diagnosis. And you know, I thought that getting a diagnosis was what I was after, and I just I look back and think, you know, careful what you wish for, because not in my wildest dreams did I think that that would be the diagnosis that I'd be getting. So you absolutely start with a roller coaster.

Conversationalist Sarah Maxwell 5:54

Yeah, that's really in the introduction. As I was reading that out, you think, why was I waiting for that news? Like who wants to wait for that news? But in some ways, it it that doctor put you forward to Dr. Victoria, who we're gonna talk a lot about today. Um, tell me a little bit about that transition, like that next step, and when does clinical trial even enter the framework?

Guest Paula Ebrington 6:21

Yeah, so I had to basically the next step was that I told my kids what was going on. Um, I promised that I was gonna be honest with them through this. Um, I didn't want to hide things. I'd lost both my parents to cancer, and you know, my mum was pretty protective about what she told us, so I didn't want to be like that. I um that was obviously the hardest thing that I think I've ever done was tell my kids. Um we went and saw Victoria, and yeah, she was amazing. I remember her drawing a picture of what was going on in my body, explaining how it had broken down basically. Something in the cycle had broken down and my body wasn't recognising that it had cancer. Um she basically said that there were treatments that I could go on to, but because it was so advanced and because I potentially had a few RAF mutations as well, that the treatment wouldn't necessarily be very successful. She then suggested that I could potentially participate in a clinical trial with Gallipoli. Um, that scared the hell out of me because when you hear about clinical trials, usually it's for people who don't have any other options. And that's what triggered inside me straight away. I was like, wow, okay, I'm there already, you know, I've just had this diagnosis and I'm already there. Um but as she explained it to me, she said, you know, I remember her saying, if if we had met seven or eight years ago, we would meet once. That's happened. But she said, you're so lucky to actually have this now because the treatments have progressed so far. And so she talked me through immunotherapy, which I had never heard of before. Um, she said that she thought this was my best shot, and you know, it was a flip of a coin, really. It was a 50-50 shot that it was going to work, but there were better odds than the other options. So I, you know, I don't remember a lot of the conversation after that. I think I just went into shutdown mine. Um, but I remember her jumping on the phone and trying to get me in to that trial. So she started making phone calls straight away. Um, and she sent me away with a wad of paperwork that was, you know, the size of a novel and said, read through, read through all of this. This is potentially what could happen. Um, but go away and you know, make a decision, have a talk to your family and make a decision. But it was her recommendation. She said, I firmly believe this is the right, the right thing to do and the right way to go. And, you know, as you already said, I had to put my faith in her and my trust in her because she knew what she was doing. And yeah, that's that's what I did ultimately. It was a really hard decision. I started reading through the paperwork and I stopped very quickly because it was terrifying. What could happen? Um, and I just decided that I didn't need to know all of that information. And so from that point on, yeah, I really signed the paperwork and crossed my fingers, and I haven't uncrossed them since.

Conversationalist Sarah Maxwell 9:38

So when you said that you were committed to telling your boys the whole truth because of your experience with your parents, did you discuss the ins and outs of what Dr. Victorio had been telling you? Or how did you hold that?

Guest Paula Ebrington 9:54

I told them what the diagnosis was. I explained because they weren't familiar with melanoma. I explained what it was, where it was. Um I remember after telling them, you know, we they went away to their rooms and I said, if you have any questions, come back and see me. You know, at any time, come back and see me. And I remember my youngest, you and he came back upstairs with a notepad and pen and said, I can remember it's in your lung, but I can't remember the other place. It starts with an S, you know, and I I said to him, it's it's called a spleen. And so he wrote it down and and he went away again. And so the kids reacted really differently. He was quite open about it and had lots of questions. And my eldest Boki, he would, he went into himself. He yeah, he was quiet and didn't ask questions. And I I was careful about what I told them. Um, I remember a question being, are you gonna die? And you know, that was a hard one because I didn't want to lie. What did you say? I actually said everybody dies, but I hope it won't be soon. And you know, I just said I've got a team of doctors that are working to help. And yeah, that that was that. So I yeah, obviously still emotional. Um, but yeah, it was really tough. But I just said, you know, I'm gonna do everything I can to be here.

Conversationalist Sarah Maxwell 11:30

Yeah, gosh. I mean, and this is all before you actually have to do the treatment, you know, it's like these are all the decisions and all the emotional um weight that was on you. And look, can you share a little bit about how grueling those that two years was, you know, like oh gosh. And I also am curious, how does the doctor decide that you've completed the trial? Like, how does that work?

Trial Screening Day And First Infusion

Guest Paula Ebrington 11:58

Yeah, well, before I even got onto the trial, Victoria managed to get me a spot. But to get onto the trial, I needed to go through a day of tests and scans and all sorts of stuff. Um, it was one day and I went in first thing in the morning and had literally was poked and prodded everywhere I could be. And the reason for that was they had to make sure that it wasn't in my brain and I hadn't had a brain scan yet. If it was in my brain, I wouldn't have been eligible for the trial. So I went in, you know, as knowing it was 4C and hoping it wasn't 4D. Um, and that day in itself honestly nearly broke me. Um, it was much harder than I thought. And at the end of that day, I had to sit in what they call an education session to talk to me about if you go on treatment, this is what you can expect. And I was there with another lady, and she was much older than me. And I remember her sitting across the table asking questions. And the questions were, can I go to the gym? Can I still get my hair done? Um, there were questions like that, and I just I actually said to them, I'm sorry, I need to go. And I left because you know, all I cared about was, am I going to get to see my kids grow up? And so I found that really, really hard. We were obviously at different stages. Um, maybe hers wasn't as advanced as mine, but that was tough. And once I got the results to say I was eligible for the trial, literally two days later, I was in the chair. And I was told that most people react. If they're going to have side effects, they react on the second treatment, not the first treatment. So yeah, I went into the chair, had lots of trouble getting blood from me. I had to take 24 voles of blood. Um, my veins collapsed, they hit a valve. Um, it was just awful before I'd even had the IV put in for treatment. Um, and the the nurses were incredible, like absolutely incredible. But yeah, the treatment went in and I, you know, before it had even hit me, I started to scratch. So I had an itch and I was like, okay, this is interesting. Here it comes. Um, that treatment, that day when I was in the chair, uh, Brisbane went into lockdown because this all happened through COVID. So people were panicking that they had to leave, and they had, you know, people that were sitting with people had to leave. And so there was a whole complexity on top of just what I was dealing with because of COVID. Um, Paula. Yeah, I I went home, Brisbane went into lockdown, and the side effects started. So it was really unusual. Um, I had all sorts of side effects. I had the itch, a rash all over me. Um, my joints were terrible. Like I couldn't open a bottle, like I couldn't walk up and down our stairs at home. Um, yeah, there was just so many things, and they were unexpected because it was just supposed to be treatment one and nothing happened. So I was just constantly on the phone with my clinical coordinator um at GMR, um, and they were incredible. So, yeah, look, I I was a bit unusual. Um, we were all pretty scared about what was going to happen on the second treatment, if that's what happened on the first treatment. Um, and I was told not to go anywhere far from the hospital just in case. And on the second treatment, nothing happened. So it just I was a bit of an anomaly. Um, I was really, really lucky that I guess everything came first and everything sort of started to settle down. And look, while I say I was lucky, it was tough. Like it was immunotherapy, isn't it's not easy. Um all sorts of um reactions happen to all sorts of people. I had most of them, um, but it settled down, it settled down pretty quickly. Um, I had a rash all the way through, I had achy joints all the way through, but you know, compared to chemotherapy treatment and what that does to your body, immunotherapy is incredible to really.

Conversationalist Sarah Maxwell 16:12

So it's a lot, it's quite different. Like there's reactions, but different ones.

Guest Paula Ebrington 16:16

Different ones. And you're still you're still able to live. So I worked full-time through my treatment and to the point that most of my colleagues didn't know I was sick. Oh, wow. I chose not to tell most of the people that I worked with, except the ones I was close to and my boss, of course. Um, but you don't lose your hair, you don't look sick, you you can carry on if you choose to and not tell people.

Conversationalist Sarah Maxwell 16:42

Do you feel better at any point? Is that what it's like? Like you go through this, the intense sim um reactions, and then do you start to feel better at some point through the treatment?

Guest Paula Ebrington 16:53

Yeah, I think my body started to get used to it. Um, but you know, it's funny because it's this false sense of security. And I joke about that too, because I would just think that I'm getting into this new normal for myself, and that I knew what was coming and I knew what you know was going to happen, and it was just a slap from the universe going, no, you don't, because all of a sudden something else would happen to the point I was two years in and ended up with colitis and ended up in hospital. I hadn't had that before, and it was really again rare. Normally that would happen straight away, but I had been fine and two years on, I was not fine to the point that I was pulled off the clinical trial because oh really, yeah, and then incredible Victoria managed to get me back onto the clinical trial after the colitis was resolved.

Conversationalist Sarah Maxwell 17:50

Oh my goodness.

Side Effects And Working Full-Time

Guest Paula Ebrington 17:51

Yeah, you didn't hear about that bit. No, so it's just there's so much to, you know, there's so much to talk about. It's yeah, it's hard kind of for me even to remember everything that happened.

Conversationalist Sarah Maxwell 18:04

Um How do they even decide polar when you're done, when you finally finish the trial? How does that work?

Guest Paula Ebrington 18:10

So for me, uh again, my my scans were a bit all over the shop, Sarah. It I would have a good result, a clear scan, and then I'd have a scan that showed colour in my spleen. And it was baffling for me, baffling for Victoria even. And she said through the process that she didn't actually think it was cancer in my spleen anymore, that she thought it was inflammation and that the PET scan actually can't distinguish between the two, which is really unfortunate. If it was any other organ in my body, they could have biopsied it, but it's a spleen, and you can't biopsy a spleen because if you put a needle in it, you bleed out. So we were, you know, between a rocket hard place, really, it was either remove my spleen, and my spleen could be perfectly fine, and I really need my spleen to fight cancer. Um, or we come off treatment and see what happens because it was actually the treatment that was causing the inflammation. So that was the only way to know whether it was cancer or inflammation. And I chose not to come off sooner because that treatment wasn't available on the PDS. And I couldn't afford $300,000 for a runoff treatment. So we waited it out essentially. Um, and incredibly, it got added to the PDS in February last year. And Victoria and I sat in that room together and went, well, now's the time to take the leap. You know, we've been talking about this, it's now accessible. In case it is cancer, I can go on to that treatment again and be able to afford it. But if it's not, we'll know. And so I didn't hesitate. I was like, right, I'm off. And I walked out of that cancer ward and yeah, just went, okay, here we go. It's over to me now. So yeah.

PET Scan Confusion And Stopping Treatment

Conversationalist Sarah Maxwell 20:18

You really get a sense through your sharing of that of how literally medically there's it's like discoveries, like your experience and Dr. Victoria's interplay with you is like you're both working together to really fight this thing because she's making discoveries and testing, and and your trust in her was very important. You can hear the relationship between the two of you. And just it's really mind-boggling, actually. And and I I suppose one of my thoughts is like, what got you through the hardest times while you were, you know, even in these decision-making processes? Should I be on? Should I go off? It's so expensive. Like, what got you through the hell?

Guest Paula Ebrington 21:07

Well, I think it was just a sheer determination to be here, to be here for my kids. Um, they were the they were without a doubt the biggest thing. Um, you know, I would just keep pushing forward and going, nope, you know, there's things that I want to be here for, there's things that I want to see, you know, there's time that I want to spend with them. And yeah, that was it. So every time it was tough, every time that I felt sorry for myself, I would think of them and think, no, you know, I'm gonna keep going, just keep going. Um, and I think, you know, the in in broader scope, it's the fact that you know this disease is really un, like it's really uh unknown, misunderstood even. Say. Um, and I think it was that drive as well to to be part of something that you know could help other people as well, you know. So yeah, it was tough, but I think this is how we're gonna cure the disease is by clinical trials, by people trialing new drugs and seeing whether or not it's gonna work. And that, you know, that became important to me. Initially, it was really about me living to see my kids grow up, and then it sort of became a bigger thing as well for me.

Conversationalist Sarah Maxwell 22:37

And just quickly going back to the boys, um, is it surreal when you actually live some of these milestones that that you stuck around for?

Guest Paula Ebrington 22:48

Yeah, it's incredible. It's it really is, and and look, my kids will, I still think to this day, my kids they will never fully understand. I, you know, I often talk about the driving lessons, and it's something that, you know, I think most parents dread. It's like, oh my God, you know, I'm gonna have to teach my kids to drive. God, I sat in that car with my son, and like, I must have just looked crazy to him, you know, with a grin from ear to ear. And at some points, I think I was having a little cry. And he he looked over to me at one point and he's like, Are you all right? You know, I'm gonna make it through this month. Yeah, you know, I'm like, yeah, I'm good. And I didn't say to him at the time, but I'm like, you know, dude, I didn't think I'd be here. I didn't think I'd be here to see this. So, you know, it's the big stuff, yes, you know. I stood with him at his graduation, which I honestly didn't think I'd be at. You know, there were there were big things, there were big milestones, but it was those little things as well that, you know, you wouldn't think were a milestone, but they were to me. And yeah, so when I when I get to see things like that, it's absolutely incredible.

Why Clinical Trials Matter

Conversationalist Sarah Maxwell 24:01

You know, you talk about you're you're like gratitude embodied, you know. People talk about gratitude journals, and and I know why they talk about them like that, but you are the embodiment of gratitude, and that's why your son is probably doesn't know what to make of it sometimes. Yeah. Because yeah, like when his voice cracks, I'm sure not every mother is as joyous as you. You were or are when these things occur. So I think again, you're a real example to us all, a reminder as parents to appreciate the small things because we do, we take them for granted, you know, unless life comes to deal us a really crappy deck, like you have been dealt. And and yet, and yet you've become a trial recovery hero in some ways, you know. And you mentioned how you started to really step into that and and realize that these clinical trials are important and that you're part of that story. So can you share some moments? I know there were some really key moments when you realize that this label of being a beacon of hope sort of fell upon you. So I uh there's an amazing story about your blood in particular that was so hard to draw. You know, you mentioned that in the beginning, how hard it was to get blood from you. But yet your blood became a little bit famous, Paula. It did, it did, yeah.

Milestones That Suddenly Feel Sacred

Guest Paula Ebrington 25:27

And that was sort of, I hated that part, you know, when when they would come to take my blood, I'd be like, oh, you know, uh, yeah, like vampires. I I were real, you know, because I knew it was going to be difficult. But I asked them one day why? Why do you need to take so much blood? And they explained to me that because it was a global clinical trial, that part of it would stay here and part of it would travel overseas. And I was at a function for Gallipoli um not that long ago, where I was lucky enough to speak to a room full of incredible people um that were part of Gallipoli. And afterwards, two girls came up to me and said, you know, that was a great speech. Thanks for sharing your story. And one of them said, you know, I know you or I know your name. And I said, Oh, I how? And she said, I actually am the person who processes your blood. And she said, So, you know, every month I would see your name and I would, you know, divvy up the blood to go overseas and divvy up the blood to stay here. And she said, So, you know, I've been following your journey through your name and through your blood. And she said, and then, you know, one day your name just stopped coming, you know, the blood stopped coming. Um, and then the lady that was standing next to her said, you know, I know you too. And I sort of said, How do you know me? And she said, I'm actually the lady who signed you up to the clinical trial at the very beginning. So, you know, it was it was crazy to me that you know, there was all these people that knew me that I didn't know that played a hand in what was going on with me. Um, and that, you know, that became so apparent as I've attended some of these functions and met more people through Gallically. It's you know, they're an incredible group of people, and yeah, they've just welcomed me into their community, and I'm really grateful to be a part of it. But but yeah, it's a bit weird that people know you and people know your journey.

Conversationalist Sarah Maxwell 27:40

And yes, and all these people pulling for you, you know, like people that don't know you know your name, like pulling for your survival. And I think that it's interesting to hear how at first it was really about keeping yourself alive and how there's now this transition slightly to the bigger picture, like you're saying, even that recognition that this is a global trial and my blood's going international across the world, so that other people may also have a chance, um, like you have. I think that's a really incredible part of your story. And and thank you for sharing how Gallipoli has come into the fold for you. How do you feel that being part of that community on top of all you've been through has helped you in the post-trial phase?

Guest Paula Ebrington 28:35

Yeah, I think it's just um knowing that if ever I need to reach out, I can. And I think, you know, I stood in a room the first time I was asked to speak, to speak to I think there was about a hundred people in the room, and you know, it was a bit scary for me. I didn't want to stand up and talk about myself, but I I did because I was asked. And you know, I reflect back on that and think I stood in that room full of strangers. I didn't know anyone, and I don't think I've ever felt more at home. It was a really strange feeling. It just, yeah, it was just I think knowing that yeah, there was all these people who cared.

The Story Behind Her Blood Samples

Conversationalist Sarah Maxwell 29:26

Yeah, you know, it can't be underestimated the power of that of a community. It's interesting how sometimes medically it can be, okay, trial done, like well done, Paula, thank you. But yet seeing this um complete wrapping of who you are as a person, which includes it's been almost two years, I think, since since you walked out of that cancer ward that day, um, you know, to hear the community and how at home you've you've been received. It's really beautiful. And and yet the reminder is these PET scan calls, you know, and I and I often think put myself in your shoes and I think, what is it like? What are the emotions when you wait to hear Dr. Victoria's assessments when that call comes in?

Community Support And Scanxiety

Guest Paula Ebrington 30:19

Yeah, it really sucks. Yeah, I don't know how to better describe it than that. It's it's a real thing. Um, they call it scanzioti. So the anxiety, yeah. So there's a term in our community for it. Um and it it is a real thing. Um you know, I think coming into cancer, you leave a different person no matter what you go through. I think there's, you know, parts of me that are just very, very different. And the part of me I think that that relates to is that I'm always going to have this fear. Um it's like that little monkey that sits on your shoulder every time I have a pain or an ache or a headache or something like that. I sit and think, God, is that is that it? Like, is it is that come back? Is it and it is I think no more um evident than when you're going into a PET scan because that's all you can think about. You're having you're on a diet the day before, you're thinking about it constantly. Um and I go in anxious every single time, regardless of whether I'm feeling good physically beforehand, mentally, emotionally, um, or whether I've got pain. It's just one of those things I think that is never going to change. So I I go in, I have the scan done, and then usually you can wait a couple of days up to a week to get the result. I do my best just to forget about it now, um, because I realised it's not healthy to obsess about it for a week. So, you know, I do my best just to get on with things. Um, the night before, I usually warn my kids. So I've told both of my boys, this is what's going on. I'm gonna be anxious, I'm gonna be emotional. Um, I hope I said it earlier than now, but I'm really lucky to have two incredible teenage boys by my side. Um, and they just they just wrap around me. And, you know, if I'm cranky, I'm cranky. If I'm sad, I get cuddles. You know, they'll they'll do their best to try and put my mind at ease. And I think, you know, the sad part is I know they're as anxious as I am. Yeah. So it's, you know, it's the thing that the three of us just try and figure it out and get through it and, you know, hope for the best. I think I, you know, I said earlier, I think I crossed my fingers the day that I signed that paperwork, and I never uncrossed them. So I literally just crossed my fingers and hope for the best. Um, and look, I've been really fortunate that I've had, you know, a sustained period of good results. Recently, my scan just showed a little bit of colour back in my spleen, which my doctor thinks is inflammation.

Conversationalist Sarah Maxwell 33:22

Um, but yeah, it's it's just that uncertainty all over again. Like you've had that other time. Thank you for being so honest about this. Um, I really appreciate that. And I you I'm reminded of that moment when your one of your sons asked you, Are you gonna die? And your answer beautifully was, We're all gonna die. And yet hearing the anxiety that you feel, and you said it's like a monkey, you know, sitting on your shoulder, it makes me just it reminds me that it it's a constant reality check that many of us pretend is not gonna happen. You know, like in a way, you're living more truth than all of us who pretend in some way that we're not gonna die. Because yours is so close, you know, every little um pain that you feel, it goes right to that. Like you really, yeah, I just really appreciate your honesty with living with that. And I suppose I did wonder there's an assumption that your life is all rainbows and sunshine now, that you have dodged a bullet, so to speak. But what is life like for you these days?

Guest Paula Ebrington 34:38

Yeah, I mean, great question. It I'd like to say that it's you know, rainbows and fairy flops, it's not. Um it's I think a balancing act, honestly, between grief of what life used to be like because it's not anymore.

Conversationalist Sarah Maxwell 35:01

Um, thank you, because those are two very far from each other emotions, like grief for what was and is no longer, and joy. Like, how do you marry those two things?

Guest Paula Ebrington 35:34

You can't, and so it's just this constant roller coaster, I think. And that's that's the bit that I've had to embrace. You know, initially I was like, oh my god, when is this roller coaster gonna end? It's not, it's it's not gonna end. And I think for me, it's just that some days I recognize that you know I can be on that roller coaster and I can be laughing and have my hands in the air. And other days, you know, I'm screaming and terrified and holding on for dear life, you know, it's just that piece of yeah, it's that piece of understanding now that I have. I think for me, you know, I I've openly said cancer has taken a lot from me, a lot, physically, mentally, emotionally in my life. But I also, it's funny to say it, but I'm grateful that I've had the experience as well, because it has definitely um given me an understanding of how important time is. And we do, we all take it for granted. You know, we just think that, you know, we've got all this time, but none of us knows, you know, you don't know, I don't know. Um, so I think for me, that's that's probably the key learning is that time is the most important thing that we have, and our health is the most important thing that we have, because without health, you you don't get anything else.

Conversationalist Sarah Maxwell 37:06

And yeah, that that's I want to ask a deep question around time because there is that sense of gratitude that you're here, that you have time, and yet life doesn't just decide to reward you for surviving your clinical trial. You've had challenge, like life is throwing you challenges with work. How do you marry life throwing you the challenge, which you can share or not about what's going on with work? Um, marriage. How do you still appreciate time when there's so many challenges coming at you?

Grief Joy And Choosing Hope

Guest Paula Ebrington 37:44

Yeah, look, some some days I do look at the universe and go, you know, enough already. I have had enough already. Um I try, I really try to keep a sense of humor about it because I think without that sense of humor, I would be in fetal position in the corner. Um, so I do, you know, in amongst all the stuff, still try and have a laugh about it and go, you know, I must have done something bad in a prior life, but you know, that's not how it works. That's just not how life works. Um, it yeah, you get what you dealt and you deal with it. And I think that's that's it for me. Like it has been incredibly challenging, as you said. I'm in a position where I've had a great job and there's been a restructure and I'm now looking for work, which is challenging. Um, my marriage has broken down, challenging. Um, there's been lots of things that I have been dealing with as well as cancer. But, you know, I think that's where hope comes into it. Call it whatever you want. Hope, faith. Um, for me, I call it hope. And I sat in that chair in Victoria's office on that very first day with hope that, you know, I would be okay, that I would get time, that I would get to see my kids grow up. And I have never let go of that. And I think that's really, really important is that you don't let go of hope. And same goes for the rest of the things that are happening in my life. Yeah, I would like things to have turned out differently, to have had an easier run, but that's not what has happened. Yeah, and so I just have to keep putting one foot in front of the other, and I have to appreciate the things that I do have. And I think that's the bit as well. I'm learning to let go of stuff. I used to be such a control freak. Like I was, I had to plan everything, I had to be in charge of everything, and and through this process, I have just let go of so much because you have to, and you don't know what's ahead, you don't know what's coming, even though we all think we do. And so you have to get comfortable sitting in the unknown and not spiraling because of that. And so, you know, I do I do laugh sometimes that cancer set me up really well to deal with divorce and redundancy because it it made me realize that hey, you don't control everything, you know, you're not in control of everything that happens, and you can either face up to it and make the most of it and appreciate those that are around you. I go back to my two incredible boys who have had my back, who I'm so incredibly proud of, you know, and that is how I I balance it. You know, try to find the best in what I'm dealing with, try not to spiral too often. I definitely spiral, but not too often.

Conversationalist Sarah Maxwell 41:04

Um, and I have hope that things are gonna get better. Profound words, Paula, truly, around letting go and hope as you travel down the whitewater raft adventure of this life that you've been living. I can't help but be reminded that if you hadn't said yes to the clinical trial, that possibly you wouldn't even be here to go down this crazy ride of unknowns that you describe. And I just want to truly thank you for being the kind of person who can share the way you do, who can describe the emotions, who can just sit with them and share them with us. I think we're all better because of your experience. And you could have just never told anybody, you know, and just had your life with your boys, and yet you have chosen to be open to the Golipidly community, and we just want to thank you for your capacity to share in this way. So thank you.

Guest Paula Ebrington 42:10

Oh, it's a pleasure, and as I said, I think it's really important that people know that they're not alone and that other people are dealing with similar things. I think that that's really important. So that's that's why I do it. Um, if it's helped one person, then you know that's a good thing.

Host Miriam Kent 42:31

Thank you for joining us for this episode of Voices. We hope you've been inspired by the courage, honesty, and generous spirit shared on today's episode. Our work only happens with your support. So please visit us at www.galipoliresearch.com.au. And now over to your part. If you know someone who needs to hear this episode, please share it with them. And why not review our podcast so that others can hear voices of GMR? Don't forget to click the follow button so you can easily find that next episode. Thank you for listening. We look forward to sharing the next voice of Gallipoli Medical Research with you very soon.