Overcoming leukemia during COVID: Eve Cossette’s triumph over adversity

[00:02:34] Kate: So, let’s get into today’s episode. Hi there, and welcome to Talking Blood Cancer. Today, I am here with our very special guest, and I will get her to introduce herself. Would you like to tell us a little bit about who you are, your name, where you live? Who is in your family, your diagnosis, and then what was happening around the time of your diagnosis?

[00:02:56] Eve: Hi, my name is Eve Cossette. I am a 30-year-old living in Melbourne. I was diagnosed around in 2021. I was 26 years old at the time, I had just moved into our new house with my partner. And I was diagnosed when we were still renovating our house and it was kind of like at a peak of our life where everything was really good and we were just kind of settling down and, yeah, I got diagnosed. And then it was right in the middle of COVID. So, it was just me and my partner here with our friends and his family here. But my family was in Canada not able to come see me here. So yeah, most of it was mainly my partner and I for a very long time.

[00:03:46] Kate: And so you mentioned you were diagnosed and can you tell us what exactly you were diagnosed with?

[00:03:52] Eve: So I was diagnosed with T-cell ALL, so acute lymphoblastic leukaemia.

[00:03:58] Kate: Wow.

[00:03:59] Eve: Um, yeah.

[00:04:00] Kate: And I have no doubt that as you said, you were renovating, you were nesting, you were setting yourself up. You were 26 and I imagine at that point in time, quite healthy. What were the signs for you that you went, hmm, something’s not right.

[00:04:14] Eve: There was no signs for me. I was actually really healthy. I was renovating full on, like..

[00:04:20] Kate: Really?

[00:04:21] Eve: Almost 24/7, and..

[00:04:23] Kate: You were on the block.

[00:04:25] Eve: Yeah, there was no signs, but maybe looking back, there might’ve been, but I didn’t know. And I just I went to see my GP because I hurt my foot. I fell down a hole, renovating again. And then I had bruised quite a lot and I was also feeling a bit tired, but I thought it was more like anxiousness cause I was a bit short of breath. And yeah, my GP just said, “You know what, we’re just gonna do blood tests just to make sure that there’s nothing else bigger than just anxiety or something.” And, yeah, two days after I was driving to the hospital with my partner.

[00:05:05] Kate: Wow.

[00:05:05] Eve: Getting told that I had leukaemia.

[00:05:06] Kate: And who told you that you had leukaemia? Was it the GP that gave you the phone call?

[00:05:11] Eve: No, so that was really weird. For me, it happened. I was in bed still and I just got a private number call and the guy on the phone was just, “Are you near a hospital now? Can you get there as soon as you can?” And I was like, “What?” And he was like, “Yeah, we think you might have leukaemia.” And, so that’s how I kind of learned about it, but I wasn’t sure. And then..

[00:05:36] Kate: It wasn’t confirmed.

[00:05:36] Eve: He told me once I was at the emergency that, that’s really what they thought I had. And I guess for me, I kind of denied it until the next day when they did my bone marrow. I was just in denial. I was, they got the wrong bloods.

[00:05:54] Kate: Yeah.

[00:05:55] Eve: It’s like, I just, I was like, no way. There’s no way this is..

[00:0558] Kate: So far from what you thought.

[00:05:59] Eve: Yeah.

[00:06:00] Kate: Yeah. And was your partner at home at the time you got that phone call?

[00:06:05] Eve: No. So he was at work and I remember that when the guy called me and told me all of that, I couldn’t speak. I couldn’t, like I barely could breathe. So he said, “Do you want me to call your partner?” And I said yes, and he called my partner he just said to him like, “Look, you need to leave work, you need to go and get her and take her to the emergency as soon as you can.”

[00:06:29] Kate: Wow.

[00:06:30] Eve: And he was like an hour away. So..

[00:06:32] Kate: Oh, so not even close. So it was a long wait.

[00:06:34] Eve: Yeah, yeah.

[00:06:35] Kate: So what was that hour like for you? I can’t even imagine hearing that news. And you said you couldn’t speak and then you’re at home by yourself.

[00:06:42] Eve: Yeah, I actually called one of my best friends. Because I didn’t want to call my partner while he was driving and tell him all about it. Just, I thought it was a bit dangerous. So I just called one of my best friends and both of us were like, no, look, that’s, he can’t just tell me that on the phone. You know, he can’t diagnose me this. Knowing now what I know, I know he definitely could see that I had leukaemia. But back then I was like, no, no way, he’s really shouldn’t be calling me and telling me this.

[00:07:11] Kate: How inappropriate of him.

[00:07:14] Eve: But also there was a part of me that was really scared.

[00:07:17] Kate: I imagine.

[00:07:18] Eve: Yeah that was a very intense hour where I had to wait for my partner.

[00:07:23] Kate: Um and then, I mean, you’ve mentioned that, your family are in Canada and you’re here in Australia and geography isn’t my strong point, but I do know that they’re very far apart. And from what I know, time zones are very different. So I can imagine having to make that call or your partner or yourself making that call is I think one of the worst nightmares to have when you’re living abroad.

[00:07:47] Eve: Yeah, to this day, it’s one of the most painful things that I can think about is. Because they told me officially around like midday and I wasn’t allowed with my partner in the hospital. So..

[00:08:01] Kate: Of course, because of COVID.

[00:08:02] Eve: Yes, so I first had to kind of get out of the hospital, tell him and go back. And then all my family was sleeping, ‘cause it’s the complete opposite. So they kind of woke up around, 8 or 9 at night, so I had to wait the whole day to, like, think of how I would tell them and how I’d be able to even..

[00:08:24] Kate: Tell them?

[00:08:25] Eve: Yeah, tell them. And so, yeah, I just called them as they were waking up. I just called them one by one and told them what was going on.

[00:08:34] Kate: And that must’ve been really hard with the complexity of COVID as well. I mean, I have no doubt when you know, I’ve got family abroad that when you hear news like that, you instantly want to be by their side and you instantly want them by your side if things are going wrong and to have had COVID on top of that. And it was a blatant no, that no one could come.

[00:08:54] Eve: No, it was quite a long time before they were actually able to come, and even when they were allowed, it was quite complicated because there wasn’t a lot of flights available for them to even be able to. So there was, I guess like the first half of my treatment, my intense treatment, was just well, my partner and I, but of course we had our friends and our family here that helped. But, for me, I kind of needed my mom and my dad and, you know..

[00:09:21] Kate: Absolutely.

[00:09:22] Eve: So, yeah.

[00:09:23] Kate: Yeah. I can’t imagine having to walk that path alone and your parents having to do that, you know, and know that you’re going through such an intense time. Because had leukaemia ever been in your world before or the word leukaemia, did you know to the extent?

[00:09:39] Eve: Not really. Like I always thought of leukaemia as like something the children would get. But not as an adult. But in saying that I knew that my grandfather’s brother had leukaemia, but it’s kind of something that I never really thought of. Like that happened before I was even born. But other than that, no, it wasn’t something even in my mind.

[00:10:03] Kate: Yeah.

[00:10:04] Eve: Or even like just cancer in general it’s not something in my family or, you know.

[00:10:10] Kate: So then I would imagine that with the doctor having given you the news that treatment would have started straight away and if it’s kind of never been in your world before, it’s so very confronting to hear..

[00:10:20] Eve: Yeah.

[00:10:21] Kate: What is needed.

[00:10:22] Eve: Very scary as well. You don’t know, I remember being really scared the first chemo that I got in my system. I don’t know why, but I was just expecting it to be painful or something. But it really wasn’t like I was just, oh, okay, that’s it, you know, but even just that, I remember it being very, very scary. So, I really had no idea what to expect. And I was really scared of how it would affect me. How I would react to it and I wasn’t even aware of what could happen. I just, you know..

[00:10:56] Kate: It was just fear. You had fear. How did you manage that? How did you get through those? Because I think it’s a really common experience for someone, especially when their first cycle to go through, how did you get through that?

[00:11:07] Eve: I honestly, I think the answer is, I don’t know. I think my body and my mind just went into survival mode and I was just able to process information and to go through it in completely different mindset that I had ever experienced before. I’m a very anxious person. I’m a very emotional. When I was in the hospital, the first month and a half where I was stuck in hospital, no visitors, no nothing because of COVID, I just took it on. And I just went through it. I wasn’t feeling anxious or anything. It was just. Yes, I was scared, but I don’t really know.

[00:11:45] Kate: Do you think it was cause you were like, well, I want to say you have no choice, but you have no choice?

[00:11:50] Eve: It is a bit like that. Yes. It’s also, I’ve got to do what I have to do to survive. It’s not silly things anymore that I have to worry about. It’s the biggest, uh..

[00:12:01] Kate: Biggest threat.

[00:12:02] Eve: Yeah, exactly. So I guess that’s why I say it’s survival mode. Cause it’s like your body and your mind just know that you need to put all your effort, all your strength into getting better.

[00:12:15] Kate: Yeah it’s that fight or flight mode, isn’t it? And you absolutely were in your fight mode. You knew that. And you know, you mentioned that you were quite an anxious person. Was your husband, is he your husband now or?

[00:12:25] Eve: I am going to say he’s my fiancé.

[00:12:27] Kate: Oh he’s your fiancé. And you mentioned COVID, was he able to come visit you?

[00:12:32] Eve: No.

[00:12:33] Kate: Oh, he wasn’t, you were literally alone.

[00:12:35] Eve: Yeah.

[00:12:36] Kate: Oh my God.

[00:12:37] Eve: Yeah, at that specific time at the Royal Melbourne, there had been a case in the ward. So just before I got diagnosed, so for a very long time, there was no visitors at all. For even like six months after.

[00:12:51] Kate: Oh my gosh.

[00:12:52] Eve: Just no visitors at all. So he wasn’t allowed to come in the hospital. I was allowed to come out and just tell him that yes, I have cancer and everything. And then went back in and then I didn’t see him for another month and a half.

[00:13:09] Kate: Wow.

[00:13:10] Eve: Yeah.

[00:13:11] Kate: It is really that part of COVID, oh, there’s so many to be honest, but that really breaks my heart. When you need your people in there and I’m sure you connected with some people on the ward, but everybody’s going through their own stuff.

[00:13:22] Eve: Yeah, exactly.

[00:13:23] Kate: And the nurses would have really become, I imagine, your support system.

[00:13:27] Eve: Yeah, I was very lucky that my doctor, the nurses, everyone was lovely and they were very understanding, I guess, of the struggles of the situation. So they tried to make it..

[00:13:39] Kate: As supportive as they could.

[00:13:40] Eve: Yeah, exactly.

[00:13:41] Kate: Mm. And so you began treatment and you said you were very nervous about that. And before treatment began or during it, did they speak to you about fertility or anything?

[00:13:51] Eve: Uh huh.

[00:13:52] Kate: Like that?

[00:13:54] Eve: Yes. I know that for me there wasn’t many options. They did take the time to talk to me about it. There was, I think, two options. It was either they were, freezing some ovarian tissues, or I was gonna be put on a injection..

[00:14:11] Kate: Blocker?

[00:14:12] Eve: Zoladex, probably the same thing, yeah. In order to protect my ovaries and that’s what I ended up choosing.

[00:14:19] Kate: Yeah, wow. And to process that information again all by yourself would be huge. But what I’m really happy to hear is that they did take the time and you felt informed to hear about it because some people, some women of your age, they don’t feel that that was their case.

[00:14:35] Eve: Yeah, I know I did speak to some women my age and they weren’t given that opportunity and I know I was really lucky. My doctor, she just made sure that every single aspect of my treatment was covered. She really just went above and beyond to make sure that I was covered in all bases.

[00:14:55] Kate: And I envision that that would make for a trusting relationship between you and your doctor.

[00:15:00] Eve: Oh, absolutely. Yeah. I have confidence in her and I just know that she was the best doctor that I could have gotten. Personality wise, but also just the way she dealt with me and with my leukaemia and everything. Yeah, I couldn’t be happier with who I have as a doctor.

[00:15:19] Kate: And I would think though that you, Eve, play a lot in that as well to be open and, you know, ask the questions you need because the relationship is two ways. And think it’s so important, isn’t it, to voice what you want and your concerns and ask those questions.

[00:15:34] Eve: Yeah, definitely. I definitely did that.

[00:15:37] Kate: Yeah..

[00:15:38] Eve: Yeah, she responded well, so that’s good.

[00:15:42] Kate: Yeah. And it puts the mind at ease, right? And it helps you for a situation where you don’t have much control. It helps you feel somewhat in control.

[00:15:50] Eve: Definitely, because I, sometimes I had questions where I could see she was like, how do you even like, where did you see this? Or, you know, why are you even asking about this? But she just always took the time to give me an answer, trying to reassure me. And I think she was the biggest advocate for me too with the other complications that I had during my treatment and after my treatment. Yeah, she was amazing. So..

[00:1619] Kate: Oh, I’m so glad that has been your experience and it’s amongst this very dark situation and you mentioned that you’ve had some complications. So round one, you were very nervous about that. How did that unfold for you? Was it okay or was it the beginning of some complications?

[00:16:35] Eve: I would say the complications didn’t start then it started just like at the end of my intense treatment, but It was the start of a very long and hard year. So, for me, it lasted a year, because they gave me a AYA treatment. So..

[00:16:53] Kate: Mm hum, AYA? So that AYA stands for adolescents and young adult.

[00:16:58] Eve: Yep, because I was 26, so I was young enough for them to be able to give it to me but that makes it a bit more intense. And because I was higher risk than other people. I had an extra at the end as well that was added on top. So it lasted a good year, even a little bit more. So, yeah, the beginning was just the start of something very intense where I was extremely fatigued. I had lots of nausea. It was a challenge.

[00:17:27] Kate: And how did you manage that day by day?

[00:17:29] Eve: Day by day, yeah. I really struggled with the fatigue more than anything else. I think it was, mentally I had issues also with always being fatigued. Cause I thought, when I had my immune system, I could have gone and done things, you know, and enjoyed my life a little bit, but I was too tired at times. So, sometimes it was just making me very frustrated. So it was just as hard physically as it was mentally for me to be fatigued all the time.

[00:17:58] Kate: And I can imagine that being really frustrating if you, as you said, your body was almost ready to step back into things, but you, yourself, your fatigue level was not there.

[00:18:09] Eve: Yeah.

[00:18:10] Kate: Yeah, I mean, did you try to push yourself at times and then go, I’ve actually gone five steps back, now, I shouldn’t have done that. Was there a balance of you finding your level?

[00:18:21] Eve: I guess at first, it was hard to manage and try to find the right amount of activities on the weekends and that wouldn’t, you know, set me too much back. But  after a few rounds, when I had my treatment at the beginning of the week, then I could go out Saturday afternoon and do things and push myself and that was enough for me to, I guess, for my mental, and it wasn’t too much for my body. But it was very helpful when I had something to motivate me. So there was no way that I would push myself if I was on my own, you know, during the week. There was no way. But if I know I had a, like a family dinner with my nieces that I was looking forward to see, then yes, it was a bit easier to be like, okay, I’ll push for a good two hours then I can sleep and then I can just relax and recover. But definitely when I was on my own, it was too hard to push. I really had to have a motivation.

[00:19:20] Kate: Yeah, and it’s almost that too, as well. I think it folds into the purpose as well, your motivation, your purpose, and your desire. But I can absolutely, and I have heard so many people go when it’s myself, ah, it’s just easy to lay here and I’m so tired and exhausted.

[00:19:36] Eve: Yeah no, definitely. I wouldn’t have gone for a walk on my own, but I was going on walks with my partner during the weekend. So..

[00:19:44] Kate: And was he working, still?

[00:19:47] Eve: His job was really helpful with that. They allowed him to have some days off, but, because I’m Canadian, then I didn’t have access to any kind of payment or anything like that. So, he had to continue working.

[00:20:01] Kate: Wow.

[00:20:02] Eve: Yeah.

[00:20:03] Kate: That’s another layer, another layer, and I’m sure that would have pulled him in a million different directions.

[00:20:07] Eve: Oh, definitely. And you know, at first when my parents weren’t here to help and it was just him that was a bit harder to deal with. But once my parents came, I guess for him, it was okay that he worked cause he knew that I was looked after at home.

[00:20:23] Kate: And how long did your parents come out for?

[00:20:25] Eve: Three months each, so..

[00:20:27] Kate: Oh, wow.

[00:20:28] Eve: And then my brother came.

[00:20:40] Kate: Wow. And it goes to show how much it just affects the whole entire family, like that it’s not just the patient, but it ripples through the entire family and entire social network.

[00:20:41] Eve: Yeah, definitely, I saw all my family and all my friends just get together and try to help as much as they could. And, yeah, it was quite touching to see how, like, it’s something that’s happening to me as well to my partner, but everyone is touched in trying to help and..

[00:21:01] Kate: Coming together.

[00:21:02] Eve: Coming together, yeah.

[00:21:03] Kate: And, so you mentioned that yeah with the fatigue and that was crippling and how many months would you say, did it happen more so whilst you were in treatment or did it really kick in once you finished your treatment?

[00:21:16] Eve: The fatigue?

[00:21:17] Kate: Hmm.

[00:21:18] Eve: During treatment.

[00:21:19] Kate: During.

[00:21:20] Eve: As soon as I finished treatment, I was good. It was really, for me it was really the chemo that was making me sleep. There was one particular chemo that I could sleep like 20 hours.

[00:21:31] Kate: Really?

[00:21:32] Eve: It was just knocking me out.

[00:21:34] Kate: Wow.

[00:21:35] Eve: It was, yeah, it was crazy. And then some cycles were easier than others. Cause some cycles I had chemo every day. But other cycles, I had chemo on Monday and then I didn’t have any for the rest of the week, so then I knew that I’d have my weekend. And I learned how to manage it and how to organise everything, you know, if I, yeah.

[00:21:57] Kate: Did you struggle with surrendering to it?

[00:21:59] Eve: Yes. I really fought to try to not be tired or not admit that I was even tired or too tired to do something. I did, I went to some events that I probably shouldn’t have gone just because I wasn’t admitting to anyone that I was too tired for it.

[00:22:17] Kate: And do you think that that comes with almost not wanting to shed the identity of who Eve was pre-diagnosis?

[00:22:24] Eve: Mhm.

[00:22:26] Kate: To then where you are and what you are?

[00:22:28] Eve: Definitely, it’s that side of things is hard because once you admit that it affects you that much and that you know, it has changed what you can do and what you’re willing to do or, then it’s like you accept that. That me is kind of in the past and this is what’s going on now and..

[00:22:49] Kate: Yeah

[00:22:50] Eve: Yeah. 

[00:22:51] Kate: And with no control of your own, like you did not control this coming into your life. And..

[00:22:56] Eve: No.

[00:22:57] Kate: I think that that’s sometimes why we do struggle when things happen to us and we haven’t invited it in. The adaptation and I guess surrendering to it can take a bit longer.

[00:23:09] Eve: Oh, definitely. Yeah, I still struggle thinking, it’s a big struggle of mine to think of who I was before, who I was during and who I am now and to try and find that person that I was and not let what happened affect me too much. But it’s still accept that it did happen to me. So it’s, okay that I am a changed person and it’s a very big struggle.

[00:23:35] Kate: And I think one that unfolds and continues and that you would have to work on daily almost at times.

[00:23:41] Eve: Yeah, definitely. Especially I think at that time of my life where I’m going to turn 30 and I’ve, you know, managed to finish my masters. I’m starting my career. I’m thinking of starting a family soon and things like that, getting married and it’s a lot at the same time and trying to figure out who I am and all of that, that’s happening and that’s happened and..

[00:24:05] Kate: While fighting for your life.

[00:24:06] Eve: Yeah, yeah, exactly.

[00:24:09] Kate: Yeah. And then, you’ve mentioned fatigue. Was there any other hurdles and hiccups that you came across in your journey?

[00:24:16] Eve: Um, yes. So because of my treatment, I’ve developed AVN, so it’s avascular necrosis.

[00:24:23] Kate: Yes.

[00:24:24] Eve: So that’s been my struggle at the moment, actually.

[00:24:26] Kate: Where did it develop for you?

[00:24:28] Eve: So it started with the left hip, then my right hip, then my right shoulders, and then my left shoulder. 

[00:24:40] Kate: Oh, really? And how does that present itself for you? And then you know, for the listeners who have never stumbled across it or may have niggles of it.

[00:24:52] Eve: It’s really hard to explain. When it’s in your hips is like the groin area that’s very painful. And then at one point you just have a really hard time to walk on your hips. And I guess it feels a bit like a toothache pain. So that’s what it’s like and as it progresses, you kind of lose the ability to walk at one point.

[00:25:14] Kate: So did you lose the ability to walk?

[00:25:16] Eve: At one point I was quite, yeah, I would say I continued because I’m stubborn. But, but I probably should have stopped. It was quite painful and when it was too much then I just said I’ve had enough, I need the hip replacement. So they did a hip replacement for that one.

[00:25:36] Kate: So was there, I’ve spoken to some other people and that are in their youth, and they say that it was almost a fight to get the re placements done because of their age. That the doctors were not willing to do it because of the age that they are. And then they would need another one down the track and to try and push them out as long. Did you have that?

[00:25:57] Eve: No I actually, when I said my haematologist was a very big advocate for me, she really played a big part in this. To make sure that the surgeons, the orthopaedic doctors were taking me seriously in my pain and what I needed. And, I also was really lucky because my orthopaedic doctor was very, very helpful.

[00:26:21] Kate: Incredible.

[00:26:22] Eve: I think, he pushed me, like, he made me wait a bit too long. That was also because I had a part of my treatment that needed to be done before.

[00:26:31] Kate: So your treatment hadn’t finished when this all presented.

[00:26:33] Eve: No, yeah. But no, when I was at that point, they just said, you know, what it is, what it is. You need a replacement. You cannot possibly wait any longer. So they did. But I did hear that it’s a struggle because at our age, then you’ll need another replacement in about 20 years.

[0026:53] Kate: Yes. And that’s 20 years down the track. You needed it now.

[00:26:56] Eve: Yeah, exactly. I was at the point where it’s, it was almost the biggest struggle like compared to my treatment, it was almost worse than my actual treatment. So, yeah, it was time.

[00:27:08] Kate: Well, your quality of life, I imagine would have just been severely impacted.

[00:27:12] Eve: Yeah, yeah, yeah, I was, walking with a stick but even now that I’ve had the operations and everything, there’s things that I won’t ever be able to do again. And I’m still recovering. It’s been a year and a half and I’m still recovering and my other hip might need a replacement down the track as well. And my shoulders as well. So it’s still very much ongoing.

[00:27:34] Kate: Are you still in pain?

[00:27:35] Eve: Yeah.

[00:27:36] Kate: Yeah, wow. Daily?

[00:27:38] Eve: Yeah, yeah.

[00:27:39] Kate: Wow.

[00:27:40] Eve: Definitely. My shoulders are very, very painful.

[00:27:43] Kate: And how do you manage that? Physically. Mentally.

[00:27:46] Eve: I don’t know. I just, I just think that I’ve accepted it. I think I’ve accepted that that’s what it is. And ‘cause I used to get very, very frustrated about it. It’s like I had cancer and then that wasn’t enough to have that happen to me on top. And so I think at some point my body’s just. I was just very tired and mentally I was very tired because it’s like one hit after the other sometimes. But I think now I’ve come to a point where I’ve accepted it and I don’t let it affect me in my daily life. And I’ve adapted my daily life as well to make sure that I don’t feel the pain as much and I’m not put in positions where I’m in pain. ‘Cause with AVN it’s like certain movements are painful and others aren’t. So yeah, I think I’ve just tried to organise my life so it doesn’t affect me that much anymore.

[00:28:39] Kate: I really liked how you used the word adapted. That you’ve adapted, what you can and your life too. And I think it’s a really powerful word. It’s giving you the control to adapt in your life. What you love, what you can do. What have you adapted? What have you injected in?

[0028:59] Eve: I ask for help and I know it might sound silly, but I’m not someone that, I ever, never ask for help. But I’ve learned that I need to. So I asked my partner for help. If after the day and my shoulders are too sore and I need help to take off my shirt, then I’ll ask. And it took me a long time to accept that I needed to ask for help now. But now I do it just because it’s, the pain of doing it is too much. And my partner also convinced me that it’s okay that I ask him for help. It’s just things like that. My movements just, I don’t do the same movements when I go do the laundry, I do it differently. It’s all in the little things. You probably wouldn’t notice that my life’s different. But it’s little things.

[00:29:45] Kate: What about fun? I can imagine you were saying at the beginning of this how, you know, you’re renovating a house and you are active and you’re fit and very much involved in life and having the necrosis takes a lot away. Cancer takes a lot away, but then this layer as well on top is another, what is it that you still manage and thrive for?

[00:30:03] Eve: We travel a lot still and that doesn’t stop me from doing it yet. So with my shoulders, my hips haven’t stopped me for doing it. I tried to still try new things. When we went to Hawaii, on the way back to Canada, I tried to do a hike for the first time since I was diagnosed and that’s something..

[00:30:24] Kate: Was that something that you love?

[00:30:26] Eve: Doing. And I was able to and I wasn’t in pain. And so I’m trying to find the new things that I can enjoy and have fun doing, not be in pain. So that was really nice to see that I can start hiking again. Because that doesn’t use my shoulders and my hips are fine.

[00:30:45] Kate: What an achievement. Like you think back to when you were first diagnosed and the fatigue, the Eve that was in bed and the fatigue that would spend five days getting ready for a two-hour dinner. You just hiked in Hawaii.

[00:30:59] Eve: Yeah, I know. I was a bit emotional at the top thinking about it and you know, it’s not just my hips and my shoulders. It’s also like my cardio and just my whole body, how I had the energy to even do it. So yeah, I was a bit emotional at the top, but just think that I was able to do it.

[00:31:19] Kate: And what, you know, sitting here listening to you and thinking about that. To think of how many days, you know, I’m sure at the time when you were in bed, you just wanted to be able to run and be at that moment and be at that almost the top of the mountain. You literally were at the top of the mountain recently and it goes to show that yes, you can get there, but it does take its time, right? Like it, it takes the days to get there.

[00:31:44] Eve: It does, but, what helped me that’s actually something that I didn’t realise then, but it helped me to know in my heart that I would get there someday, that, that was a hard time, but at the end of it, it was going to get better and I think that I just held on to that and I just, I guess that’s how I continue to push and push and push. 

[00:32:41] Kate: That’s it, isn’t it? It’s the uncertainty.

[00:32:45] Eve: Yeah, yeah.

[00:32:46] Kate: And that level of fear.

[00:32:48] Eve: Yeah, as much as I believed in it and knew it in my heart, I wasn’t a hundred percent certain. But it does help to have some kind of hope and some kind of belief that it’s gonna get better.

[00:32:59] Kate: Absolutely. I think hope, we can never underestimate the power of hope and, what it does for someone’s soul. It’s incredible to have the hope that yes, this isn’t going to always be like this in each day or even hour it will change, but, how powerful that can be in your darkest days.

[00:33:18] Eve: Yep, definitely.

[00:33:19] Kate: Wow. Well, you’re absolutely living life back to, from that girl that was in the bed. And I have no doubt, as you say, like you’re still in pain. Like looking at you today, I wouldn’t go, “Oh, Eve’s sitting there in pain.”

[00:33:32 Eve: Yeah.

[00:33:33] Kate: But I have no doubt you are.

[00:33:35] Eve: Yeah. Yeah. But it doesn’t ruin my life and it’s a part of my life, but it’s important for me that it doesn’t define everything that I do and control everything that I do. And I’m happy that I get to not let it do that.

[00:33:50] Kate: Have you gone back to work?

[00:33:52] Eve: Yep, I work full time. The last six months of my maintenance treatment, I’m working full time.

[00:33:59] Kate: Wow. And what do you do for work?

[00:34:01] Eve: I do account managing, so admin.

[00:34:03] Kate: Mm uhm.

[00:34:04] Eve: So it’s work from home. So it was very ideal because going to office and everything is not mandatory. So if some days I feel tired or I feel just in pain more than others, then I just can stay home and I can just..

[00:34:20] Kate: How incredible to have that flexibility and to have that understanding. Because I think, you know, a lot of people do think that once treatment is done, that is it, you know, but I mean, you’re a testament to know that.

[00:34:34] Eve: Yeah, ideally it is it.

[00:34:37] Kate: Yeah.

[00:34:38] Eve: I think, yeah, everyone has their challenge, but I think, not everyone has the side effects that are gonna follow them. But unfortunately I was.

[00:34:48] Kate: And I think too that sometimes for people, although they might not be physical side effects, there is still the mental load that comes along with it. What you experience when a blood cancer comes into your life or any cancer really is trauma and it’s about processing that trauma.

[00:35:03] Eve: Yeah, cause once the treatment stops, that’s where you kind of sit and be like, okay, now that’s done, how do I process it? And what did just happen? And that’s kind of where, for me anyway, that’s where the big conversations started with like my family, where we actually sat down and spoke about it. Because it’s like, before that it was, the energy was somewhere else. The energy was into healing. it was into fighting, it was in, you know, everything else. And now that treatment finishes, it’s like, okay, well what’s left to do is to deal with the emotions and the trauma and everything that comes with it. So a hundred percent, even if you don’t have any side effects or physical damages then you still have the mental side of things to deal with.

[00:35:58] Kate: Absolutely, it’s called mental health, you know, just as much as we take and look after our physical health, we also need to look after our mental health as well.

[00:36:07] Eve: Definitely.

[00:36:08] Kate: You mentioned that you had conversations and open conversations with your family. Did you go to a psychologist or did you just do all of that with your family and the work with your family?

[00:36:18] Eve: I did go see a psychologist, just because I felt like at some time I feel like what happened to me kind of happened, almost to someone else.

[00:36:29] Kate: Mmhmm.

[00:36:30] Eve: It’s like I..

[00:36:31] Kate: Detached?

[00:36:32] Eve: Yes, exactly. So, and yeah, I just wanted to deal with that. And I know that I have trauma from the diagnosis and from all of it and multiple things. And I think it’s important to not let it get worse or let it affect me now that I’m back to being healthy, back to being able to just have more free time because I don’t have the..

[00:36:56] Kate: Partake in life.

[00:36:57] Eve: Yeah, exactly. So yes, I did see a psychologist and it was helpful, but I find that talking to my partner or talking to my family or friends is what helps the most, for me. Because I don’t know, it’s just easier for me to talk about what I feel and what I felt and get their point of view and get the comfort that comes with it as well.

[00:37:29] Kate: Absolutely. They’re your people, you know, and I think it’s fantastic and it absolutely has its place. But I think what you beautifully said is that when those emotions come up, you’re verbalising them to your people that, you’re letting them out and that’s allowing everything to process and come freely, which is amazing. But the unity of family I think around the world, it sounds like you had a beautiful support system around you.

[00:39:12] Eve: Yeah, even the family we’ve got here in the friends we’ve got here.

[00:39:16] Kate: Oh yeah. Cause your parents.

[00:39:18] Eve: Well, but my partner’s family is kind of like my family too, so.

[00:39:22] Kate: They absolutely are. They’re your in-laws.

[00:39:23] Eve: Yes. Yes. So yeah, we just got support all around. I don’t think I’ve ever went to one treatment alone. There was either, you know, one of our friends, his dad, his mom, his sister, or my parents, or, I never went once on my own. So, I’m very lucky for that. We have an incredible support system.

[00:39:45] Kate: Oh amazing. Absolutely amazing. And that would have allowed your partner to, as you said previously, to be able to go focus on work, to bring in the income and to support you in other ways because that’s it. Life still goes on, doesn’t it? Life still unfolds and still rolls, um, when cancer walks in.

[00:40: 04] Eve: He definitely did everything all at the same time. Like he was able to be there at all my appointments, but also work full time. And I was incredibly lucky to have such a supportive partner and he kind of took on the role when we went to see the doctors and everything, he was the one asking questions I, like I said earlier, I think I disconnected at some point. So he really took on that side of things too, where he was the one asking the right questions, doing the research and making sure that I wasn’t missing any appointments or everything. He just took on everything.

[00:40:41] Kate: He sounds like an incredible advocator for you.

[00:40:43] Eve: Yeah, he was, he really was.

[00:40:46] Kate: Yeah. Wow. And I mean, to be, what was he 26 as well to be 26 and be faced with that.

[00:40:52] Eve: Yeah no, he was 30 at the point, so..

[00:40:55] Kate: Yeah. But still very young and to go through that and the thought of potentially losing you, I have no doubt what it is incredibly heavy.

[00:41:03] Eve: Yeah, definitely incredibly hard. Yeah, I can’t imagine, you know, there’s my side of things, but then there’s his side of things to where it’s, I couldn’t imagine how it’s like to have to care for a partner that at 30 and 26, you don’t think you’re going to have to take care of a partner like he took care of me. You would never imagine that. So yeah.

[00:41:26] Kate: It tested the relationship.

[00:41:28] Eve: It does, and it’s lucky because it made us stronger. It’s definitely a challenge.

[00:41:37] Kate: What an incredibly resilient couple you are. You’re both very resilient and very dedicated, I think, to gaining back so many things that cancer took from you.

[00:41:49] Eve: Definitely.

[00:41:50] Kate: Wow.

[00:41:51] Eve: Yeah, that’s kind of where we’re at, at the moment. Actually, it’s trying to see what plans we can have now that the appointments are all over. And now that I’m actually sorting my AVN stuff out. And, for the future and it’s very exciting, but it’s also like, oh, can we really?

[00:42:10] Kate: Can we do this now? Can we take the training wheels off again? Take your time to feel the confidence to go like, okay, you said and shared with us that you went to Canada. Like I can imagine maybe having just come out of treatment, you’re a bit hesitant to make plans cause you’re like, oh, what if, what if?

[00:42:30] Eve: Yeah, yeah, exactly. And it’s like, yeah, it was really weird to be able to be away from home, no blood tests, no nothing for five weeks. It’s just for me, but for my partner as well. And to try and like take our mind off of things to just not think about the next appointment or the next, you know, just enjoy the present and just do whatever we want to do. Act like we’re 30 and 34, you know, just not be too serious.

[00:43:00] Kate: Yeah, and you got to it. Yeah. You got to embrace..

[00:43:03] Eve: Yeah.

[00:43:04] Kate: Embrace life and being Eve again.

[00:43:06] Eve: Yeah, exactly. And that was really nice. That was a good start to the year.

[00:43:09] Kate: That is a great start. And I think it’s a really good lesson. And as we’ve said, you know, even with your fatigue and climbing the mountain, that didn’t instantly happen. It sounds like practice and daily practice. And also being really mindful about gaining your confidence back and planning for the future.

[00:43:27] Eve: Yeah.

[00:43:28] Kate: That it doesn’t come instant.

[00:43:29] Eve: No, it’s constant work every day. It’s part of the challenge actually to overcome all of it.

[00:43:35] Kate: Yeah. You’re incredible. You’re absolutely incredible. And I know this wasn’t bestowed upon you by choice, but, how you’ve handled it is really remarkable. And, I know people listening here today, it will give so much hope and something that you really held onto that I think that I hope that that’s the message so many people take away from this episode today. But as we always just mindful, I can’t believe that we’ve spoken for as long as we have, and it’s the time has flown. But, we do always ask people near the end of their episode, if there were any golden nuggets that you can leave with the listeners, you know, thinking of those people who potentially have just been diagnosed or have just finished their last treatment. Are there any golden nuggets that you can leave for our listeners?

[00:44:21] Eve: To just take it one day at a time, I know it’s probably one of the hardest thing that you can do during that treatment because all you think about is getting better in the moment like you just want it to happen right now. But, I think part of it is just to take it as it comes. And if today you’re feeling good, then enjoy that day, enjoy all of it, enjoy it as much as you can. And if tomorrow is a day where you’re tired and you want to sleep and all you want to do is lay in bed and not do anything, then that’s okay too. Tomorrow might be better. You don’t know. It’s hard, but you have to take it day by day.

[00:44:59] Kate: Beautifully said. Beautifully said from the girl that’s walked it. And yeah, you’ve definitely embraced that message yourself. So thank you so much for your time today and sharing your story. I know that it’s not easy. This isn’t an easy topic to talk about. And yeah, it sounds like the past couple of years have been a big couple of years.

[00:45:21] Eve: Yeah. Definitely.

[00:45:23] Kate: Yeah. So I hope for joy and calmness in the years to come.

[00:45:26] Eve: Thank you so much.

[00:45:28] Kate: My pleasure. Thank you so much for coming on.