From child cancer survivor to advocate: Ash Bell’s journey of healing and growth

[00:02:37] Kate: Welcome to Talking Blood Cancer. I’m your host, Kate Arkadieff. Cancer – It changes everything, not just during treatment, but long after the hospital stays end. Today, we explore what happens when childhood and cancer collide, and how these experiences shape an entire life. Today, I am joined by Ash Bell, who, at just 11 years old, was diagnosed with acute lymphoblastic leukaemia. From crushed vertebrae and unexpected diagnosis to finding purpose through pain, Ash shares her journey from an active child to a cancer patient to the beautiful and resilient advocate that she is today.

We’ll discuss the unique challenges of facing cancer as a young person, the difficult transition to survivorship, and how these experiences led Ash to dedicate her career in supporting others with blood cancer. Today, she works at the Leukaemia Foundation as a supportive care case manager, directly helping those walking a path similar to what she has before. This conversation – it isn’t just about survival. It’s about acknowledging the emotional wounds that often outlast the physical ones and finding ways to heal holistically. If you or someone you love has been affected by blood cancer, or if you simply want to understand more about the human experience behind the diagnosis. Well, this episode, it’s for you. 

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[00:04:08] Kate: Hi there, and welcome to Talking Blood Cancer. My name is Kate Arkadieff, and today I am here with a very special guest and I’m very excited to introduce to you. So could you tell us what your name is, what you were diagnosed with and then also where you’re living in Australia and who is in your support network?

[00:04:26] Ash: Thank you so much for having me, Kate. My name is Ash Bell. I’m in Melbourne and I was diagnosed with ALL, acute lymphoblastic leukaemia when I was 11 years old. My support network at the moment made up of my husband who I live with. I have my family close by my mum and dad and I have a brother and sister as well who live interstate. And also an amazing community of friends, family, colleagues. Yeah.

[00:04:59] Kate: And so you said you were 11 you, you’re not 11 now. So how many years ago were you diagnosed?

[00:05:06] Ash: Oh, actually didn’t prepare to calculate that. So I’m 34 right now. So you can do the math.

[00:05:12] Kate: Look, math isn’t my strong point either, but we’ll let the listeners we’ll put that onto them to try and work out the math. So could you tell us what was happening, as an 11-year-old? I’m sure you were bustling and enjoying life as an 11-year-old. What else was happening around that time and made your parents or yourself think something’s a bit off?

[00:05:33] Ash: Oh, so I was in grade six at the time. So my last year of primary school and around that time I was playing lots of sport. I was really active or going camping and I started to get a really sore back. And I was in a lot of pain and I was getting taken to physios and chiropractors and people were saying, “Oh, it’s just growing pains. Just walk it off.” But the pain kept getting worse and worse. And I eventually couldn’t sleep or walk properly. So that was pretty significant. I went to a doctor’s appointment, sent us to the hospital and I got some x-rays taken. And they could see in my back there were 12 crushed vertebrae. And I kept getting asked questions like, “Have you had an accident? Has something happened? A fall?” And nothing significant. And then further investigation found out that it was leukaemia. I also had a few like cracks in like my fingers and toes and feet, but I think the pain from my back was probably the most significant. So I remember being close by in a hospital, close to home, but then getting transferred over to the Royal Children’s Hospital in Melbourne. And that was the beginning of that next chapter or journey.

[00:06:57] Kate: At that point in time, I mean, you hear that you’ve got crushed vertebrae. That’s not normal for an 11-year-old. And it is one of the first times I’ve heard leukaemia present that way or to do that to the body as a symptom and a side effect. Was that a normal type response that they had seen or were they also blown away?

[00:07:17] Ash: Yeah they were quite baffled. I think it was really confusing for a lot of people. And I just recall, it feels like almost a blur now talking about it. In that period of time, just also like being in pain and being in like the center of all these like random questions and investigations and just trying to figure out what was going on. But I, in answering your question, it did feel like the general consensus was like confusion of how this is presenting and how to treat it as well. Because it ended up being osteoporosis as an 11-year-old, which again is very unusual. That was like one part of the journey. I remember just being then like on an air mattress in hospital, not being able to go to the toilet or roll over or walk for a little while.

[00:08:07] Kate: Which is so different to what an 11-year-old, I mean, you said you painted the picture before that you were really active and you’re involved in life and quite sporty. To then not even to be able to roll over like that would have been a huge adjustment I envisioned for you.

[00:08:22] Ash: Yeah. Huge. Yeah.

[00:08:25] Kate: Yeah and thinking that you’re 11 and you said before that you were at the centre of all of these big conversations. How was that for you as an 11-year-old? Were you just looking at, did it instill fear going, “Oh, something big’s happening, but I don’t quite understand what’s completely going on” or were you informed of everything along the way?

[00:08:47] Ash: Yeah there’s a particular memory that has been like a core wound throughout my life. And it feels sensitive to talk about it, but I’ve also done so much therapy around it that I feel like I can confidently speak about it on a podcast. I just remember being in bed and not being able to move. Like I was saying, like in a lot of pain, lying in bed and so many people like walking around me and like on the end of the bed. So I’m there, but I’m not in the conversation and then overhearing the doctor tell mum and dad that I have cancer. So it was like an overheard thing and not directly at me. And that like loss of control or having the conversation like directly to my face. I think has caused a lot of issues and fear of death and that significance of watching that happen and play out and seeing the impact on my family of “Oh, am I gonna die?” So yeah, that’s a really distinct moment of my life.

[00:09:53] Kate: I can’t even imagine that and it’s to think you’re really right that you’ve heard really significant and impactful news about you. But you heard it second hand and you weren’t included in that conversation. I can imagine that would have been, and I can see how that’s really impactful and life-lasting throughout your life.

[00:10:13] Ash: Yeah. This like sensation of being like stuck and out of control and..

[00:10:18] Kate: And you physically were, you couldn’t move.

[00:10:19] Ash: Physically yeah. Yeah. So it’s quite a, yeah. When I think about moments where I’ve been like anxious or stressed in my life, like that core wounding there comes back to that moment in time.

[00:10:32] Kate: You feel like you go back to that 11-year-old girl in the bed, watching life pass by again.

[00:10:36] Ash: Yeah. Yeah.

[00:10:38] Kate:  I can imagine that having the ability not to walk and the crush fractures and everything on top of a leukaemia diagnosis and it being ALL, I mean, treatment really has to start quite soon. Regardless of the diagnosis, but did your back and things like that impact their ability to treat or did they just have to push forward with treatment before you could heal?

[00:11:00] Ash: Yeah. Treatment started because I remember that transfer from one hospital to the Royal Children’s Hospital was on the cancer ward, haematology ward. I don’t even know the specifics. I remember treatment beginning and then treatment for osteoporosis starting at the same time. And I’m not really sure if it was delays regarding that or not. It was just like this chunk of years of having chemo and healing from the crushed vertebrae. There were complications that came up that I know were another factor, like getting infections and getting pneumonia and being in hospital on oxygen and those moments as well. And that happened a few times and looking back at it now, I’m like, wow, I actually probably was really close to death at those points. That was really scary as well.

[00:12:02] Kate: Do you remember being scared in those moments or not being able to pin them together going? “Oh yeah, I am really sick and this could end this way, it could end in death.”

[00:12:12] Ash: I was so young. I don’t think I acknowledged it. I wasn’t what’s the word? Like I was really aware. I’ve always been like quite an aware and curious person. I just remember like my energy was more towards letting everyone else know I was okay. I think I’d quite like accepted where I was at, so I wasn’t scared. And this sounds like a little bit like woo woo. I remember seeing like shapes and colors and light and this started my time of being just like so in love with the thought of like angels and spirits and it started my spiritual curiosity there. So I guess yeah in reflection maybe that was maybe I did really have that awareness without being like fully conscious of it. Yeah.

[00:13:04] Kate: Yeah. Wow, that’s amazing. And I think when I hear that I go, it’s incredible at this point, were you near 11 or were you heading into 12? Like how long did treatment go on you?

[00:13:14] Ash: So it was at the start, it was April of the year and I turned 12 in December, so it was the start kind of ish of the school year and then treatment went in for a few years. So I didn’t feel like I finished treatment until I was 13 and then there was that transition from primary school to high school as I was going through chemo and having to like establish. When you’re in primary school, you’re the grade six, you’re the head of the school and have a bit more confidence and everyone’s little and then moving to high school. I mean, all these normal things that kids go through.

[00:13:51] Kate: Yeah. Yes. You’re the big fish in the pond.

[00:13:53] Ash: Oh, yeah. And then changing to um, yeah, not having hair and not having to have like extra precautions on like being at school and on school camp and…

[00:14:04] Kate: Already at the age of 13, and especially for girls and going through that adolescence and puberty, you already don’t want to be different and you already feel disconnected, connected out of proportion of your body. And then have thrown a two diagnosis, let’s be honest on top of it I envision would have been incredibly difficult and an adjustment to have along the ride with you.

[00:14:28] Ash:  Yeah. It was hard. It was really hard. I hated high school. I feel really upset even thinking about that.

[00:14:34] Kate: Yeah, because it’s not easy. It’s not an easy time to be a part of and to have to be worrying about your life and worrying about how you look because you you look I imagine back then, like a typical cancer patient.

[00:14:46] Ash: Yeah and then all these new people in the school they didn’t know me, or what’s going on. And yeah, that was really challenging. That sense of identity, where I fit, where I belong, not having all my school friends, my primary school friends around me. Those like, first few years.

[00:15:06] Kate: Did you stay in the education system as much as you could or did treatment drag you away for most of the time? Because kid’s treatment’s quite intense, it’s long and it’s intense and I know that you have to go out sometimes for big time. So that’s hard to form friendships when you didn’t know anyone.

[00:15:22] Ash: Yeah, yeah. I wasn’t at school much and it actually shocks me sometimes thinking about how much I missed out on school and then how I did so well later on. So it was like, wow, I didn’t go to school for a few, probably went I don’t know, once a fortnight or half day here and there. Yeah, if that. Again, it’s like it, I remember significant things, but it’s also quite a blur in terms of like time frames, exact time frames. Yeah, I remember having a tutor at home and doing some schooling at home. And yeah, it really wasn’t at school much and failing. They were very understanding the school, but yeah, getting my report card at the end of my first year of high school and failing most of my subjects just on attendance, which is so fine, but…

[00:16:12] Kate: Yeah, but how did that feel?

[00:16:14] Ash:  I don’t even know if I’ve thought about that. I’m a high achiever. I want to do well. I want to excel. So, not good.

[00:16:22] Kate: I mean, as hard as it is, those report cards, they mark where you are and for some, they don’t care about it, but for others, it can be really impactful to go, “Oh, I’m failing.” It doesn’t build your self esteem at times if it’s something that means, you know, you hold value in your life of the grades and things like that.

[00:16:40] Ash: Yeah. I cared cause I remember trying to do schoolwork.

[00:16:44] Kate: Yeah.

[00:16:45] Ash: And trying to finish assignments and dropping things off at other people’s houses so they can submit it for me. And I look back and I’m like, Oh, I really did care but I probably would have got away with not doing it.

[00:16:59] Kate: But it’s also I wonder too, if it’s about the things that you could control like you had the sense of control of your schoolwork. Because in your life in your health, it wasn’t much that you could control or as you say that you were in the sense, like yes, you’re in the center of but you had lots more adults driving the bus for you instead of you being the driver.

[00:17:21] Ash: Yeah. Reflecting on that now. Definitely something I could try and control. And it’s a weird sensation. And like you’re saying, being in the center, but not. I think that’s just how it felt the whole time. Yeah, the center of all this stuff, but also, kind of watching it all happen at the same time.

[00:17:37] Kate: To your ability, your brain development to be able to process and understand exactly the ins and outs of the chemotherapies and the side effects and weighing it up and making those big decisions. Were you brought into the decision-making, if you didn’t want to do a treatment or you were really nervous. Could you voice that in that space?

[00:17:59] Ash: I don’t remember being like in a conversation, having choice. I feel like my body in a way made those decisions for everyone. Like for example, like getting infections and having delays. And then at the same time, I just had incredibly intense anxiety walking into a hospital and I would just vomit as soon as I came into the hospital and into the lift. Oh gosh, the amount of times that I was vomiting pink strawberry milkshakes.

[00:18:33] Kate: Oh, wow. Your little body knew, even though it wasn’t fully cognisant of exactly what was happening, it’s amazing what our bodies know and can retain.

[00:18:44] Ash: Yeah.

[00:18:45] Kate: And how were your parents and within all of this? That would be incredibly hard for them to make those really big decisions for their daughter. But knowing they’re doing it for the best.

[00:18:56] Ash: Yeah, I think they had quite a hard time, as expected. When I entered my 30s and I was around the same age my parents were when they were supporting me through cancer, I think it really hit home like how challenging that would have been. And then also having yeah, having a sick child and then having two younger kids as well, my siblings are younger than me. So having to juggle all of that and giving them attention and care as well. So yeah, it’s hard. I remember dad just working a lot, working really hard and mum was there, through most of the treatments.

[00:19:33] Kate: Because that is the really tricky thing with, and I think one of the really cruel things when a child is diagnosed and when there are other children. Life doesn’t stop, bills don’t stop rolling in because your child is sick. And it really does tear the family apart because one sole focus needs to be on the child that is ill and then there are those other children who also need attention, love, nurturing. And so it does really usually tend to that, it needs to be a team effort where you need to tag team or one has to focus on the other. And even if you have to move away as well it’s a really challenging time. And then for you to be pulled away from your siblings as well. Cause how old were they?

[00:20:16] Ash: There’s five years between my brother and I and seven years between my sister and I. So they were little, they were really little. 

[00:20:26] Kate: Oh wow, so your parents were in the trenches.

[00:20:29] Ash: Mmm, yes.

[00:20:30] Kate: Yeah, I really do feel for the parents and the children that are in it. Because as we just said, it really ripples through the entire family, which is really tough. And so you said you had treatment for three years was it three, I think you said, wasn’t it? Yeah?

[00:20:47] Ash: I remember finishing at 13. So yeah, two, two-ish,

[00:20:53] Kate: Two and a bit. Yeah. And what was it like when you finished, how was your body? Like your fatigue levels? I can’t imagine that you would have been able to run cross country and all of those types of things.

[00:21:05] Ash: Yeah, not at all because again with like my back too, that’s a whole. I remember doing an assignment in school and I remember it was around the time, I think I was still getting treatment. I was still young and it was like, write down what your like proudest moment of your life has been so far. And kids are doing all sorts of things like kicking a goal in footy and oh, I can’t think of other examples, like these really like light, nice and my assignment was learning to walk again after breaking my back.

[00:21:39] Kate: Wow.

[00:21:40] Ash: I got A plus for that.

[00:21:41] Kate: You should. You really should, and if you didn’t, I have no doubt your parents would be a fierce advocator and advocating for you for as to why you didn’t get that A plus. So did you have to learn to walk again at one point as well?

[00:21:53] Ash: Well, I just remember having physio. Yeah, and how challenging it was like having to stand up with two people on the side of me and having to walk. And it’s even like the proudest moment of getting to the toilet again, not being able to get out of bed. I can’t remember the exact timeframe that was, of being on my feet again. But I had a back brace for a really long time and yeah, a lot of weakness. So finishing treatment at 13 and my body not being super well it’s been challenging. That created a whole new difficulty for me. Because there was these conversations around on now, you finished treatment, you’re, go be a normal kid, like you’re normal now, there’s no cancer in your body, go be normal. And it makes me like cringe. And I hear this a lot in the work that I do and I probably didn’t introduce this properly at the start, but I work at the Leukaemia Foundation. So I hear this a lot and I can completely relate to it, this entering into survivorship and um, go be normal. 

And I think that is a space that I’m really passionate about and because of my own journey of like all this significant stuff happened for years of my life and then go be normal. And it felt so like discombobulating because I didn’t know what normal looked like, even as a 13-year-old, without going through treatment. Yeah, it’s like identity where I fit. I felt like my peers were in a different space to I was like, I still felt like a little girl. I loved playing with dolls, like all these things and then go be normal was really hard. So I really struggled with that. And then I think the other added layer was my family had been in so much pain that we stopped talking about cancer. So it wasn’t a word that we used in our house anymore. So it was like this one extreme to the other. And then on my own of “Oh, where do I fit? What do I do?”

[00:23:59] Kate: Was that an unspoken rule or did you all agree upon? We’re just not going to talk about it anymore.

[00:24:05] Ash: I don’t remember being part of like a decision around that. It just was like, okay, treatments done. And like cancer, leukaemia, that language hadn’t been spoken about again. We might touch on all like, “Oh, when Ash was sick.” Yeah, but the word cancer wasn’t thrown around. So yeah, it was challenging then going through these years of high school.

[00:24:27] Kate: Hmm. 

[00:24:27] Ash: And just, yeah, this whole journey..

[00:24:29] Kate: Feeling discombobulated?

[00:24:31] Ash:  Just discombobulated is my word.

[00:24:32] Kate: Yeah. Yeah. You know what? I think that’s a really great word. And to explain, you know, just beautifully how you have said that it’s almost like you could sense that people were trying to block it out and move on and move forward. But your body was like. I’m feeling things that I’m envisioning that you were saying that you weren’t up to the strength of a 13-year-old. And your mind was, you had experienced these really worldly and wildly things where, as that you said in that assignment, like other people are saying, I kicked a goal, but you’re like, “Hey, I learned how to walk again whilst battling cancer treatment.” I can imagine it being really hard to connect also to people at your age level as well.

[00:25:12] Ash: Yeah. Absolutely. It just reminded me of another assignment I did. I did a whole PowerPoint presentation for my year eight class on the different types of leukaemia. This is leukaemia, whole education session, age of 13.

[00:25:29] Kate: Yeah. But I wonder too, if that was your way of, it wasn’t being spoken out at home. That was your way speak about it and to have it out in the light of, ”Hey, this has happened, in my world.”

[00:25:42] Ash: Yeah. Very much. Very much. Cause I also wasn’t doing anything else that was I don’t know the correct word for this, but I wanted to say like significant, wasn’t, I didn’t have a lot of like different hobbies and things I was achieving or sports or whatever else was going on in other people’s lives. That was my life. So yeah, when it came to like assignments and needing to like write things about myself, that was my opportunity to express and let it out.

[00:26:10] Kate: Because in some ways as people say they don’t want it to be, some people really struggle with not wanting to let cancer consume their identity and then be that’s all who they are. But at some point within the journey, some people don’t like that word, but it is, it is really life-consuming. Because the world continues on around you, but you are stuck in the moment in the world of cancer and that’s really cruel that you were a bystander in life and yeah. And so you said your body was recovering and feeling very different. How did you get through that? How did you get through those moments to be where you are today and to find the resilience to go and to push through?

[00:26:52] Ash: I definitely suppressed a lot of my feelings and just tried to get on with life. That’s definitely how my teenage years felt of this come out into the world, be normal. I knew I had these like internal struggles, quite an anxious teen as well. And just tried to connect with friends. I did have a lot of friends and people around me and try to be as normal as possible. I think like not confronting, cancer was the center of my world and then it was not, and there wasn’t really like a happy medium place that was still part of who I was, but not like the overarching thing that made me. And I suppressed a lot and it probably wasn’t until like my early twenties where I was really struggling. Anxiety, depression, there was a lot going on there and that’s when I started doing some healing work. Going to therapy and was able to actually start like reflecting on my cancer journey and embracing that part of who I am. It’s actually.. I’m laughing about it now, but it’s not funny. I remember going to see a therapist and obviously, how I was presenting was pretty significant. Like, I can’t remember exactly how old I was, maybe like 21. And almost having a breakdown, all this stuff going on. And she asked me like, “How has your childhood, has anything happened?” Like there was like these prompting questions. And I was like “No, nothing, like nothing happened. I’m fine.” Like I had a good childhood and she kept like prompting. And then I was like, “Oh, I, I had cancer, but that doesn’t impact me now.” But that’s how my attitude was.

[00:28:36] Kate: As you said, you had suppressed it.

[00:28:38] Ash: Yes. Yes. And so even in that conversation of needing prompt after prompt, it took so much time to be like, “Oh yeah, like that happened.” And I just shrugged it off. So there’s been some time to have to piece some things together and realise that how significant it is, as a, effectively like…

[00:28:57] Kate: As a child.

[00:28:58] Ash: Yeah, as a child, as a trauma, as something that’s made me in a, all different ways. The good, the bad, the ugly, the magical, like I want to acknowledge all of it.

[00:29:09] Kate: Cause do you think as well that, as we’ve said, not being involved in part and being that child and things happening to you that it, it’s some way or also made it easier to suppress. Like I know that your family had the rule potentially of not discussing cancer, but by you not being an act, you know, I guess I don’t want to say not active within your treatment, but you were along for the journey. You weren’t the driver in your bus that that helped the disconnect from the emotion to the actual experience of cancer.

[00:29:40] Ash: Yeah. Very much. And I’m a kid and I’m only going to adapt to my environment well. And so it was, I can see it all now and I see it in other people as well and it’s like totally okay and normal. It’s like we just have to survive and get through this.

[00:29:57] Kate: Yes.

[00:29:57] Ash: And then we go figure out what life looks like after.

[00:30:02] Kate: Do you think your healing journey, cause you’re right it is trauma that one goes through. Do you think your healing journey potentially would have been different if you had begun therapy straight after you had phased into survivorship?

[00:30:18] Ash: Very much. And I have amazing supportive parents. But I think also not to discredit them, but I think just emotions and feelings are just weren’t something that was..

[00:30:32] Kate: I think it was so different. I think I’m doing the math, it’s like almost 20 years, right? That you were diagnosed. Did you say 33?

[00:30:41] Ash: 34, yeah, and I was diagnosed at 11.

[00:30:42] Kate: 34. Yeah, it’s been 20 years that, I don’t think 20 years ago, emotions and mental health was on people’s radars. 

[00:30:52] Ash: No no no, not at all. So it was, yeah, very much how like your family unit is and how you’ve been brought up and that very different time. DVDs were only transitioning into..

[00:31:03] Kate: Well you had to take your assignments to someone’s house. Now you would just email your friend.

[00:31:07] Ash: I didn’t have a, I didn’t have a computer. 

[00:31:11] Kate: Oh my God, you were writing it all. Gosh kids wouldn’t even know what a pen was these days.

[00:31:17] Ash: Very different. Yeah. So the emotional mental health aspect. Yeah, it wasn’t really something that was like observed or considered. So yeah, that would have been very different. And I’m just like fortunate enough that through my journey and what I’ve gone through, I’ve been able to then spend that time and dedicate energy to healing that part that needed some love.

[00:31:42] Kate: Absolutely. Because it does. I don’t think you can go through what you or even your parents have gone through and your family as well. And not deal with those emotions because it’s proving you were almost 10 years on when you began your therapy and it still came up. It was still, your mind subconsciously was processing and reacting and being triggered with your trauma. And you didn’t even potentially pull the two together until you stepped into therapy.

[00:32:11] Ash: Yeah.

[00:32:11] Kate: So what type of therapy did you do? Did you do talk therapy or any other type of therapy? 

[00:32:19] Ash: Oh, I’ve tried it all, counselors, psychologists. I’ve gone to like healers and people that are more like spiritually inclined. So, a whole different, and everything serves a purpose. I’ve picked up gems of wisdom from all the different practitioners that I’ve gone to see.

[00:32:43] Kate: Amazing. I think that’s a really, it’s, you have to be open, right? When you are beginning to heal, it’s, you have to be open to options and potentially different types of ways to heal, and that always helps. And then how did life shift from beginning therapy to, you know, you did mention that you suffered from anxiety and depression. Was there a shift when you began therapy or what then also was happening in life? Because as you mentioned, you were 20.

[00:33:13] Ash: Yeah, I just opened up this journey of healing for me. And healing and facing like feelings and emotions and confronting some of those like really significant memories and wounds that I’ve reflected on today. So it just, it took time. It was hard at that time I started. I’m trying to like piece together my life. Cause there’s so many different tangents, I think. When I finished high school, so I went through the motions of going through school and I finished high school and then I got into uni and I started a year of uni straight out of high school. But I just need to go live my life and do something else.

[00:33:57] Kate: You were burnt out.

[00:33:57] Ash: Yeah, it was, it was rough. And I did struggle at school as well. Like with academically, like I think I did okay. But it was still like hard and took a lot of energy. Especially being so fatigued that I actually packed my bags at 19 and left and went to the UK. And I think about that now as a 19 year old, it’s so young.

[00:34:22] Kate: Yeah. Yeah. Oh I wonder how your parents felt with you spreading your wings. 

[00:34:27] Ash: Terrified.

[00:34:28] Kate: Because were you still in medical appointments or that had all..?

[00:34:31] Ash: I got the all-clear when I was 19. So five years, yeah, post. Yep, so I’m like, I am getting out of here. So I went overseas for a year.

[00:34:44] Kate: Yeah. Well, you learned to walk again. I think you can tackle the world.

[00:34:47] Ash: Yes. I was so ready. So I went overseas for a year and then came, like that was amazing, like traveled. And just had a good time meeting people, came back to Melbourne. I think like the pressures of the world and society took me back to uni, even though I was like resistant. I was like, I need to go through the motions. So I started studying social work when I was 21 and that’s where..

[00:35:17] Kate: And what brought you to that? Was that your experience for what you had been through in the hospital? 

[00:35:21] Ash: Yeah. Yeah, I was like, I know this is where I need to be. I know I want to work with people. I wasn’t entirely sure. Like I was tossing up like nursing, social work. That was like the direction I was going in. And then when I got accepted into a social work degree. I’m like, yeah, this is it. That’s it. I started studying, so I did a double degree, a bachelor of human services and a master’s in social work. And then met my partner in my early twenties as well.

[00:35:51] Kate: Was that a big moment when meeting him? Did you, I can’t imagine you telling everybody the moment you meet, “Oh hey, I was a kid that had leukaemia.” Did it take you some time to open up to tell him that you had that experience in your life?

[00:36:07] Ash: It happened pretty quickly. Because where we met was, I was going to this sound meditation group. This was before like, Instagram was around. And these like, little woo things were, they’re a little bit more mainstream now and have a bit more even like science and studies behind them, the benefits. But I was going to this sound meditation group and that was my like safe space to really talk about my experience with cancer. It was really healing for me. I was going there weekly. There was like moments to connect with people. And if people were really like, building their, like self-awareness and healing themselves it was just like this nice little community that was created. And one of his work colleagues was going and I knew him really well and one day well, he continued to invite him along and was like, “It might not be your thing, but I know that there’s this girl there and that you guys will get along, and I just know that like you should meet.” And so he came along one day and he kept coming back.

[00:37:14] Kate: And you were the girl.

[00:37:15] Ash: And I was the girl. Yeah. So I was able to talk about my experience pretty early on because I was just so like in a safe space where I could. 

[00:37:27] Kate: Yeah, how beautiful.

[00:37:29] Ash: Yeah yeah really special.

[00:37:30] Kate: Wow. You were saying that throughout that, that’s when you met him was when you were doing your social work and your double degree. You did allude to the fact that you now work here, but what area of social work did you want to work within?

[00:37:44] Ash: I honestly don’t think I really knew when I was studying. I just knew I wanted to help people. And early on, it wasn’t specific to cancer at that point because I was still really struggling with my own healing journey. And even speaking, speaking about it, which seems really wild. It wasn’t until a few years ago now where I was like much more empowered and open and clear on where my career was taking me, that turning point occurred of this is where I’m going. So probably when I hit like my late 20s, around the time I turned 30 was that yeah, that clarity really dropped in so early. Yeah, early on in my social work career, I ended up, I had an opportunity to work with young people in child protection and then another opportunity to work with, in the aged care system. And working with children just seemed too confronting for me at the time and I loved working in the aged care sector. So that’s where most of my career took off from there and yeah, that’s been a really beautiful time. Like the last bulk of the last 10 years working in aged care.

[00:39:04] Kate: Wow. I wonder and reflecting on this and listening to you, has it been, you know, you mentioned in throughout this story that a lot of the time you felt like you weren’t, you’re a participant in your journey. And do you think that also to that potentially is why you’ve stepped into the role of social work to be the voice and to help empower people within their own journeys?

[00:39:25] Ash: Yeah, absolutely. To, I could really see that like the work, what I’d experienced and then what was going on for me personally to heal and feel empowered was like quite, there was like a disconnect. And I really wanted to bring some things together to really help people feel heard, feel seen for that emotional aspect to be acknowledged. That was really important for me.

[00:39:55] Kate: And I think you do that so beautifully and effortlessly. I know I’ve heard you speak and heard you advocate fiercely for people. So, it’s within your nature. And it sounds like too, you were within your education career, how much you fought to be where you are today and to achieve what you did. I mean, gosh, you learned to walk again. And you overcome, I think you mentioned a lot of lung issues as well. So not only did that yet, you had to battle to breathe at times as well. So..

[00:40:23] Ash: Yeah. I’m a fighter. That’s for sure.

[00:40:26] Kate: You are. I was going to say you have fought to be here. You absolutely have.

[00:40:30] Ash: Yeah. And to gain a sense of control, as well. There’s so much that’s felt out of control. I also forgot to mention like, the added layer of PTSD, like having post-traumatic stress disorder like that’s been a theme as well. And doing my social work degree and becoming a social worker, it did feel like I could gain some control. Interestingly enough, to then work in hospitals and healthcare. When I mentioned walking into a hospital as a kid, walking in and vomiting and that anxiety, it’s so interesting now as a professional, I can work in a hospital confidently. But as a patient, I still have that anxiety. So it just depends what like hat I have on at the time.

[00:41:18] Kate: Yeah. And I wonder too, like when you’re in control in your work and your professional career. You know exactly what to do and you know how to step in and help people be that voice. It’s a sense of power and control. But then when you’re that patient, which you’ve experienced, it’s so many of those things are stripped away from you.

[00:41:38] Ash: Yeah. Very much trying to, in my role, bridge that gap for people.

[00:41:42] Kate: Yeah, and that’s what we here at the Leukaemia Foundation do. We do on a daily basis for people is to help find their voice and advocate for themselves and to have that, gain back the sense of control as to what they can within their life and their means at the time.

[00:41:58] Ash: Yeah. Very important for me to support people to feel, yeah, heard and seen, because that’s something that I definitely needed myself. All the heart comes in.

[00:42:13] Kate: Absolutely. No, it absolutely does. And we usually ask every guest that is on, and I think throughout this episode you’ve beautifully weaved in some golden nuggets. But I mean, you’re in this interesting position because you were diagnosed as a child and I am unsure as to how many children listen to this, but as to how many parents, I almost want to ask you if you could give two sets of golden nuggets. Some for the children and for that girl, Ash, who was 11. To then the girl who is now working at the Leukaemia Foundation and for those parents to just to be able to have some sense of wisdom or thought bubbles that they may want to take away from.

[00:42:53] Ash: The 11-year-old little Ash is just feeling into the concept of play and also being told that everything will be okay. Like, just like that, like warm hug of like holding of you’re going to be okay. Just knowing that like you’re safe and supported. That’s what the little girl just needs to hear. And I hope like that provides some comfort of like those reminders that you can give that to yourself. And then I feel like that’s really similar for the adult version as well is to nurture that little, that just segues into the adult version of just like tenderness and care, that everything can be so overwhelming and heavy and a lot to hold. It’s okay to just pause and acknowledge what like your simple needs are at the time. Whether it’s just like a hug, or to be able to talk to someone, and just like for them to just listen to how you’re feeling and what’s going on without fixing any problems. I think everyone’s really good at fixing problems, which is great. We’re all problem solvers, but to just be. So I think yeah, the nugget, for like the little version and the adult version is almost the same. Supporting that tender self and to just be. Those little moments of simplicity and comfort can make a huge difference to a really hardcore, scary journey.

[00:44:21] Kate: Yeah. Anything for the parents?

[00:44:24] Ash: I feel like that advice is very much the same.

[00:44:26] Kate: Yeah. I think that’s..

[00:44:27] Ash: Yeah. I feel like for the parents that it’s the same. There’s like scary feelings and fear and holding a lot like your own fears and your child’s as well. And so any love care and nurturing for self-care. I’m a big advocate for self-care, all different things that I do to support myself and support people and then people say, yeah, look after yourself. And you say yeah. But really like just those moments that like stop and pause and breathe and cry if you need to cry, and fall apart if you need to. I think feeling is really important rather than suppressing everything.

[00:45:08] Kate: And you’ve walked it, you know, you’ve done both, you’ve suppressed it. And I would ask, where did that get you? It actually took you back to healing. And I think we do, all of that medical world and it is so important to be on that medical journey to bring our body to a place where blood cancer is in remission or at a maintainable level to then. We actually also have to do the mental healing as well. The mental health is just as important as the physical health. And just like we can’t avoid the medical health and treatment, we also can’t avoid the mental health as well.

[00:45:46] Ash: Yeah. So important to look after ourselves and it’s not easy confronting those aspects and I’m definitely relate on such a deep level around that. But I’m so incredibly grateful for my life now and how far I’ve come and where I’m at. And I’ve always said to myself there’s a reason that I’ve gone through this hard stuff, like what’s the point of going through all this hard stuff and doing all this healing if it’s not being transformed into any good? So yeah, I’m so, so happy to be working at the Leukaemia Foundation. My 11-year-old self was so proud. I just like cried when I got the job.

[00:46:33] Kate: Oh.

[00:46:33] Ash: Working here, just thinking about, Oh my God, that 11-year-old me would be so proud of me right now. Because I’ve really just gone through the mud and the mud and really felt like the depths of pain and I acknowledge that I’m privileged, but also I’ve gone through a lot of hard stuff myself. And just to be here and to have all that transformed into good in the world and supporting people with blood cancer is just like the best thing ever. Like, I’m so happy. And I’m well, just in case people were curious. Like am really healthy and like fatigue lingers, but other than that yeah, doing so great. Yeah. So it definitely is a journey, but there’s so much magic in that as well. One last tidbit because I just thought of something.

[00:47:24] Kate: Love it.

[00:47:25] Ash: One of my favorite quotes that I like go by all the time, it’s a from like a Buddhist proverb, is “No mud, no lotus.” And lotus flower has to grow through the mud in order to bloom on top of the water, like it has to go through that dark murky uncertain time to then come up through the mud and bloom into a beautiful flower. So whenever I’m in dark times, I just like continuously say to myself like, “No mud, no lotus.”

[00:48:01] Kate: Yeah. “No mud, no lotus.” I absolutely love that. I love it.

[00:48:06] Ash: Yep. The mud, the dark,

[00:48:08] Kate: Beautiful.

[00:48:09] Ash: and the light. Yeah.

[00:48:10] Kate: It is hard in those moments to trust that the lotus is going to come or the light’s going to come or these too shall pass. But it’s having the hope and having a purpose and a passion is so, so important to help you get through that, those times of the mud to know in the will that, yep, there’ll be better, there will be better times ahead.

[00:48:32] Ash: Yeah. Absolutely. Yeah. 

[00:48:35] Kate: And I think we also need to be kind, you said you give people yourself love and kindness throughout the healing journey is that, it’s cancer’s not done as soon as treatment’s finished and, it is years, it does, as painful as this may be for some people to hear, it does still stay with us throughout our life and it doesn’t form completely sometimes a part of your identity, but it is still there within your identity. And it’s about how you continue to move forward from that and that takes work, daily work to achieve that. And some days you may absolutely ace it. And then other days, as you said, you give yourself kindness and you surrender to those emotions.

[00:49:15] Ash: Yeah, I very much believe in all of that. That there’s, I mean, I mentioned like PTSD before, but there’s also concept of like post-traumatic growth. And so there’s hardship as well as magic and magic can come in all different directions of like support from people, building connections and really seeing like how strong and courageous you are and being able to face those dark times. So there’s both aspects of it.

[00:49:46] Kate: And you have to look for it. Don’t you? The glimmers. Yeah, we have to look for the glimmers. Even if they’re teeny tiny glimmers that we begin to look for each day, we will continue to see more. One speck, and if you’re looking for the glimmers more daily, you’ll actually see more twinkled throughout your day.

[00:50:05] Ash: Yeah. The glimmers are important.

[00:50:07] Kate: Thank you so much for your time and your story and being so open and vulnerable with me today. I think that this story will be, it won’t just be for the parents and the children who are experiencing a blood cancer diagnosis, but it will be for whoever, because we all walk different journeys, but yeah, we can all take away nuggets within a conversation. So, thank you so much.

[00:50:31] Ash: Thank you. Thank you so much for having me.

[00:50:34] Kate: My pleasure.