From Leukaemia Diagnosis to Finding Hope and Humor: Siobhan Hoy’s Inspiring Journey

[00:02:37] Kate: Hi there and welcome to the podcast Talking Blood Cancer. My name is Kate and today I have on with me Siobhan. So what I will get her to do, just like we do with every other guest, we get her to introduce ourselves. If you could tell us a little bit about who you are, how old you are, what were you diagnosed with and what was happening around, the time of diagnosis and also who is in your support network.

[00:03:02] Siobhan: Hi, I’m Siobhan Hoy I’m 23. I am living in Inverol, NSW. I was diagnosed with acute lymphoblastic leukaemia at age 14 and 18. My support network consists of my mum, my dad, my siblings and some really good close friends.

[00:03:23] Kate: Wow. So 14, you said you were diagnosed.

[00:03:27] Siobhan: Yep.

[00:03:28] Kate: What was happening in your world at the age of 14 that made you go something’s not quite right?

[00:03:34] Siobhan: So at the time I was going to school, being a typical 14 year old. I probably had a bit more attitude than most. I was playing hockey at the time. I was a goalkeeper, playing pretty high level hockey, so like your first grades, playing state level and stuff like that as well. So I was getting some pretty gnarly bruises, and um, just thought that was part and parcel with the territory. But I think, probably about a week before I got diagnosed, I had a really bad blood nose, probably lasted about 20 minutes,

[00:04:12] Kate: Yeah.

[00:04:13] Siobhan: So I just thought it was change of seasons, I used to get really bad hay fever, I was like, this is totally normal, I think. And then two days later I got another one.

[00:04:21] Kate: Had you told your mum, or your dad?

[00:04:23] Siobhan: Yeah, I told mum and she was like, ‘oh that’s not good’. Mum had more concerns than I did.

[00:04:30] Kate: Okay.

[00:04:31] Siobhan: As per usual, I was like blasé. Not really blasé, I knew something was up, but when you’re 14 you don’t think, oh I’ve got cancer.

[00:04:39] Kate: No.

[00:04:40] Siobhan: So about two days later I got another one and it was pretty bad. I didn’t realise how much blood was actually coming out till one of my mates was like ‘oh my God’.

[00:04:50] Kate: Yeah, right.

[00:04:50] Siobhan: He said, your face. And I was like, oh, and there was blood everywhere. And then so the bruises, the blood noses, and I could sleep for astonishing amounts of time.

[00:05:02] Kate: Wow.

[00:05:03] Siobhan: And I put it down to being a teenager, being quite active. My parents owned a pub at the time, so I was working there. I was socialising, just being a teenager, and just put it down to having a pretty hectic schedule. Mum did not think that, so she got me a GP appointment. And then she was away at the time, so my dad took me. My GP ordered a blood test, it was the last blood test of the afternoon so I only got that done, and then probably four hours later they called my dad and they were like, you need to bring her back in, right now.

[00:05:37] Kate: And so was that the pathologist or was that the GP that mentioned?

[00:05:43] Siobhan: At that time I was living in a town called Lawrence. So Grafton based hospital called and they were like, ‘your daughter is not well, you need to get her back in here, straight away’. I think the GP had sent everything straight to the emergency room doctors. And, was probably the quickest trip to Grafton I’ve ever had. It’s only a 20 minute drive, and I think we did it in about 10.

[00:06:07] Kate: Oh my God.

[00:06:08] Siobhan: And still at the time like, I was like, no, we’ll go home. I want to have a shower. I need to do my hair. I need to put my makeup on. I was just like, oh no it’s fine, it’s just low iron. That’s what I kept telling everyone. And then got a few more tests done. My mum drove home from where I’m currently living. And she was with my elder sister and I was probably in emergency for about four hours I reckon before everyone kinda got there and everyone spoke with the doctors. Obviously when you’re younger they don’t talk directly to you, they talk to your parents. 

[00:06:44] Kate: How did you feel about that?

[00:06:46] Siobhan: Look I’ve never really thought about it in that sense. I’m glad that they told Mum and Dad before they told me. I don’t think I would have comprehended what they were saying at the time. I liked them telling mum, but then when treatment started there was a lot more communication between myself and like my parents and stuff, so. Dad came in, my sister sat beside me and my mum stood in the doorway, absolutely blubbering her eyes out. I just look back and I’m like, ‘oh mum, you were a wreck’. My big sister was like, ‘you’re gonna be fine, it’s totally fine’. And I was like ‘okay what’s going on?’ Because at the time there was a bit of an age gap between me and my siblings. I’m the youngest by 10 years. So I was like, ‘oh, this is weird’. Dad was real teary eyed and I was like, this is so unusual. Like, no one in my family’s a real big crier.

[00:07:35] Kate: Yes.

[00:07:35] Siobhan: Mum maybe, but the rest of us are pretty loud. Dad was like, oh um, so, it looks like you’ve got leukaemia. And I was like, knew that it wasn’t a good word. And I didn’t really, at the time, I honestly didn’t know. I think the closest thing that I knew about leukaemia was My Sister’s Keeper. Not a good reference point.

[00:07:54] Kate: No.

[00:07:55] Siobhan: Definitely.

[00:07:57] Kate: Yeah, well they were dramatised reference.

[00:08:00] Siobhan: Yeah 100%, it’s still very traumatic and very scary. But I think I cried for about two minutes and then I looked at my sister and I said who’s going to play hockey on the weekend? I honestly thought that it was going to be like a five day thing. Like, I was like, oh no, it’s fine.

[00:08:15] Kate: Course of antibiotics and away you go.

[00:08:17] Siobhan: Yeah, I’ll be fine. And then,

[00:08:20] Kate: So were the doctors in the room at that point? Were they able to, and to say, ‘oh, this is what it is actually’. And

[00:08:27] Siobhan: After the first initial shock of everything and everyone kind of simmering down, she kind of explained it. And then she’s like, I said, ‘well how long am I going to be away for?’ And she was ‘oh, I think three weeks’.

[00:08:40] Kate: Can I ask what the reality of that was in the end, Siobhan?

[00:08:44] Siobhan: I think it was coming up to 10 months that I lived in Brisbane.

[00:08:47] Kate: Yeah. So a little different from three weeks.

[00:08:49] Siobhan: Yeah so for the first time, so 10 months. And I was like, every time I’d go in, I’d be like, so when do I get to go home?

[00:08:57] Kate: Yeah. That was your focus.

[00:09:00] Siobhan: Yeah I wanted to get home. I lived on a farm, 160 acres. I didn’t have neighbours, or I did have neighbours, but they were about a K away. So, Living in an apartment and in the city with so much noise was so,

[00:09:15] Kate: Different. And so did they say to you, look, Siobhan, you’re actually going to have to go to the city to have your treatment work. Was that a long, like how long from your diagnosis to, did you begin to start treatment? Was that a fast process?

[00:09:29] Siobhan: It would have been less than 12 hours.

[00:09:32] Kate: Wow.

[00:09:33] Siobhan: By like being initially told, I think it was about 6 – 7 o’clock I got moved to the children’s ward at Grafton. One of my best friend’s mum was working, so I got the royal treatment. I got all the good snacks. Um, the perks of living in a small town. And then the next morning, I think it was about six o’clock, they flew me out to Brisbane. I got on the plane

[00:09:57] Kate: Was anyone with you?

[00:09:58] Siobhan: Yeah Dad came with me. Mum went home to pack the essentials, her and my sister actually argued about a hair straightener.

[00:10:05] Kate: For you or for them?

[00:10:06] Siobhan: Yeah, for me they were like, ‘you know what she’s like with her hair?’ And my sister was like, ‘she’s gonna be bald, why are you worrying about it?’ Like we look back on that now, and that was quite a big argument, and we all laugh about it now.

[00:10:20] So Dad came with me. And then we got to the emergency room of the Children’s Hospital. Started in a nice little cubicle, so it was just Dad and I to begin with. And then my Mum and my elder sister Sigourney and her partner Darren showed up, and then my brother and his wife, Anna and Mitch, they showed up and then my other sister Courtney showed up. And then a really good family showed up with her husband and three, two kids at the time.

[00:10:49] Kate: You had everyone.

[00:10:50] Siobhan: So we went from a little waiting room with two people, I think that was, it ended up being about 11 of us. And they’re like, ‘oh we can move you to the ward now’. It’s a quick transition.

[00:11:02] Kate: The Hoys are taking over.

[00:11:04] Siobhan: Yeah, pretty much it was exactly like that. And

[00:11:07] And how did that make you feel though? Like as a 14 year old heading into a hospital environment, which is really foreign for most. And as you said, you were in a brand new city. You were in Brisbane. And to then have all of this scary stuff, hearing this news to have your support around you. Was that a sense of comfort? Did that help you distract from what was going on?

[00:11:30] Siobhan: It was 100 percent like amazing to see everyone come together so quickly. Bit mind blowing really. I was, because we, everyone lived about four or five hours away from each other and it was just everyone all together all at once.

[00:11:45] Kate: What beautiful family roots. The fruits of the labor of family come, they bloom.

[00:11:50] Siobhan: It was very overwhelming, I’m not going to lie. We’re not a quiet family, that is for sure. And the constant, ‘oh, are you okay? What do you want? What do you need?’ And I was like, I just want to be left alone. I was 14.

[00:12:03] Kate: Yes.

[00:12:04] Siobhan: I was like, this is very overwhelming. But I had a really good support network. Everyone was a bit worried. I had a nurse with me. I think because I spent about a week in hospital, I think about the first four days the nurse didn’t really leave my side. I think they put me on suicide watch without me noticing.

[00:12:18] Kate: Really? And do you know why? Were you depressed? Were you showing signs of

[00:12:24] Siobhan: I think because I didn’t react in a typical way, I’m definitely one to put a wall and be like, nah, it’s going to be all right. Or I kind of distracted myself, like I was FaceTiming my friends all the time, they’d ask me how it was. I’d be like, yeah, I’m right. It’s good. Could be worse. And when I was still at Grafton, my sister sat down beside me after everyone had left and she goes, ‘you know, you’re going to have to be the strong one in this’. She goes, ‘not everyone’s going to be able to handle this’. And I was like, ‘I know’. So I think I took that on and I was like, I’ve got to be strong because there’s a lot of people out there around me that might not handle this as well as I do.

[00:13:03] Siobhan: And also coming from a family with a bit of an age gap, it was always like, yeah, toughen up, you’ll be right. Which is probably something that I still live by now. I’m like, oh, it could be worse.

[00:13:14] Kate: Yeah.

[00:13:15] Siobhan: And it’s a bit of a hard one, but you still, just got to get up and get on with it.

[00:13:18] Kate: You do.

[00:13:19] Siobhan: But that was the first initial bit of figuring out what was going on.

[00:13:25] Kate: Because had they spoken to you, you know, I think in regards to understanding really what’s going on and what does it mean, like that did anyone discuss with you that you would lose your hair or what that would mean for your fertility? Were there any discussions around any of that at the beginning? Because as a young 14 year old, they’re really big important questions, I imagine.

[00:13:47] Siobhan: 100%. So the doctor came in, his name was Dr. Andrew Moore. Absolute legend, love him so much. He came in and he started rattling off all this stuff, these statistics, what was going on. And I was like, didn’t really have anything. And I was like, so am I going to lose my hair? And he was like, ‘yep’. And I was like, ‘okay’. And at that time, like I had really long hair, like I’d straighten it all the time. It was always done. It was always, there was always something going on with my hair. So a 100% part of my identity. And at that point in time, I was like, ‘Oh, it’s not that big of a deal’. It’ll be right. But then as I started to lose my hair, oh God forbid, I would not let it go.

[00:14:27] Kate: Really?

[00:14:28] Siobhan: Went and got it nice and short, but it just got to the point where mum was like, ‘if you keep pulling your hair out and putting it on the floor, I’m going to start gluing it back on your forehead’, and I was like, okay, you need to let go. Like it’s going to be okay. And I was like, cause I felt like I still had my hair. I still wasn’t sick.

[00:14:45] Kate: Yeah.

[00:14:46] Siobhan: I might seem really silly, but 

[00:14:48] Kate: Nope. I’ve heard it many times.

[00:14:50] Siobhan: Yeah. They discussed fertility and at 14 I still hadn’t even had my first boyfriend. I was like no thanks. I don’t want a baby. They went through all of it, but they were very hopeful. They were like, look, the type of leukaemia that you’ve got you should be fine. There’s like a 75 to 85 percent chance. You’re gonna be fine. It’s not gonna come back. You’re gonna be all good. I was like, okay, sweet. That niggling bit in the background. I was like, what about that other 25? 35 percent chance. What happens to them? And was like, never really had thought about kids. Who thinks about you know. No, I was too worried about other life stuff.

[00:15:32] Kate: Your hockey game, clearly. As a 14 year old and as someone within their teens, that’s where their focus and their thought should be. It’s, what’s the next sporting event? What’s the next school event? What’s happening, you know, in that social world? Not am I going to want kids at 30, 35 or whatever it may be? It’s yeah, really big decisions that are thrown on you so early.

[00:15:56] Siobhan: They looked at mum and dad. Cause obviously at 14 you don’t have the consent, like mum and dad hold that. That’s their job. And he couldn’t see the future. No one can see the future. They can’t tell you what’s going to go right and what’s going to go wrong. But, like it was just a decision that was made and that was it. You just got to move on with what had happened. You can’t dwell on it. 

[00:16:18] Kate: So the decision was made not to preserve your fertility, is that right? 

[00:16:21] Siobhan: Yeah, yeah. Given the statistics and everything like that, they were like, no, you should be like, we’re really hopeful this is going to be a breeze. They did say that with my ALL for my age range, a bit unusual. They usually don’t see it in adolescence and stuff like that, but gotta be an anonymally, anomaly? I can’t say that word.

[00:16:42] Kate: You want to, you don’t want to be a statistic. You want to be on the good side of the statistics, don’t you? Yeah

[00:16:48] Siobhan: Yeah, you never think worst case scenario either.

[00:16:51] Kate: Um hum

[00:16:52] Siobhan: Just try and be hopeful.

[00:16:53] Kate: Yeah and it’s, did you ever find, Siobhan, like you say that, and I know you and I have had conversations before and I guess having those moments of hope, it’s a really hard thing at times to always uphold hope and to

[00:17:06] Siobhan: Oh 100%.

[00:17:07] Kate: Yeah.

[00:17:08] Siobhan: I struggled with that, and I still struggle with it all the time. You gotta try and look on the bright side, but sometimes the dark side, it is hard. It is so hard. I left the children’s hospital once I finished my first treatment, I did struggle with the whole why did I get to live, that whole survivor’s guilt thing especially with all the little ones. It is still something that I’m like, don’t really like to talk about, but I think it is something that does need to be discussed. That’s another invisible thing that no one really knows what’s going on. Like, you can smile and you can be as happy as Larry, but in those moments you’re like, oh my goodness. It’s a very overwhelming feeling.

[00:17:53] Kate: Yeah.

[00:17:54] Siobhan: And I was at that age where I could articulate what exactly was wrong with me. Like, I had open communication and it was so easy. But with the little ones it was heartbreaking, like you’d see them and you’re just like ‘oh god I just wish I could take this all away for you’ and I was one of the oldest kids on that ward.

[00:18:16] Kate: Wow.

[00:18:17] Siobhan: So you don’t put it in the background, as much as the little ones do.

[00:18:21] Kate: You were exposed to a lot. You saw a lot, you could understand a lot more than say someone who was five.

[00:18:30] Siobhan: Yeah. It was a bit like, and the nurse was like, I’ve got, so I take my hat off to nurses all the time. But the nurses on that children’s ward were unbelievable. They were phenomenal people and I don’t know how they do that every day. Saw some pretty horrific stuff, but then I also saw, like some amazing stuff, like absolutely amazing. Got to meet some beautiful kids, met a little girl that had a two percent chance of living and now she’s eight, I think, still. Yeah, so it’s crazy, like you get to see some really amazing things but there’s a lot of heartbreak with that.

[00:19:06] Kate: It is, it’s um, you do hear that some people say that’s almost the silver lining, right? Like in those wards and in those hospitals and in those moments, and sometimes those moments are always at 3am in a real dark space when there’s no one really around, you see a side of humanity that you would never ever see. If this diagnosis was never laid upon you, and for some people, they walk through life, never being exposed to that beautiful, caring side of humanity. But on the flip side of that, in order to see that you have to also be walking a really hard path. And then also seeing some other people experience some really tough challenges as well. And, that in itself is almost, it’s trauma for you to see, you know,

[00:19:56] Siobhan: Yeah, yeah.

[00:19:58] Kate: With all of those exposures and you were saying you had some rounds of chemotherapy, what was that first lot of treatment? Did you have to go through a bone marrow transplant or was it just your standard protocol and then moved through? 

[00:20:10] Siobhan: Yeah, so standard protocol, no bone marrow transplant just

[00:20:16] Kate: Just 10 months in Brisbane.

[00:20:17] Siobhan: Lots and lots of chemo. I think I was, some weeks I was getting maybe three rounds of chemo some of it was at home. Chemo tablets and then all the other medication that comes with that, it was, I look back now and I’m like, I don’t know how I did it really. I was living at the foundation, I think I was about two and a half months in, and I wouldn’t go downstairs, and I wouldn’t go talk to anyone. And my mum is a very social butterfly, she would talk to a brick wall if it would talk back. So she’d obviously made friends with all the girls in the office. She’d made friends with everyone that went into the smoking area. My mom’s a smoker. So she had all these friends. She had every, she’d made her own little support network for her. And, I was so against it. She was like, you need to come down and meet these girls in the office. I was like ‘no, no, no’.

[00:21:08] Kate: And was that because, do you know why you wouldn’t want to come down? Did you not want to be seen? Did you not?

[00:21:15] Siobhan: It’s a combination of things, 100%, one of them was I didn’t want people to see what I looked like. I didn’t want to, I know this is bad, but I didn’t want to see other people look like me. Didn’t want to meet other people in case, worst case scenario. And I just didn’t feel like me, 100%, I just didn’t feel like me anymore. So, just wasn’t about it, didn’t really want to acknowledge the whole fact of where we were.

[00:21:38] Kate: Sense of denial of what was going on and,

[00:21:41] Siobhan: Yeah. And then I don’t know how, but mum got me down in the office one day. I got talking to a lady called Maryanne and that was probably one of the best things that happened to me.

[00:21:53] Kate: And why was that?

[00:21:55] Siobhan: Maryanne wanted to talk about things that weren’t cancer related. She wanted to know about my hockey, my life at home. She spoke about what, where do you see yourself in five years? What do you see yourself doing? Where do you see yourself in ten years? And, just general chit chat about stuff that I couldn’t really find a way to talk with anyone else. Obviously being a 14 year old on a kids board, wasn’t really anyone else around my age. If they were, they obviously didn’t want to talk about it. I tried my hardest to keep on that brave face and just keep on going. And distract myself with gossip from home, gossip from anywhere, TV series, anything that I could indulge myself in, I tried to do that. But yeah, talking with Maryanne and then, I think after the first couple of weeks, I think I was down in the everyday having a chat with them. On all my good days, oh for sure, 100 percent was down for a chat. So it was really good.

[00:22:55] Kate: Do you think that for a while then I think it’s really quite normal that you, as you were describing, she was going into a form of protection. She was looking after herself and you were, you know, you had pulled back because as you said, you didn’t want to be exposed to a lot that was going around you and you, really focusing on shielding yourself. And then I have no doubt it was all connected to your identity. And then it sounds like when you began to open back up to the world and tap in, you began to be able to see hope in a future again. And potentially look at, ‘oh yeah, there could be life after this’.

[00:23:33] Siobhan: Yeah. We started setting goals for what I could achieve. And it was just a matter of counting down the months. But with every treatment you, like, you’d be going good for a couple of weeks, and then your bloods would plummet or your neutrophils would be shot, so it would be, it’s another three weeks. We’ve got to stop for a little bit, we’ve just got to let you recover and then we’ll get back into it. The whole stopping, I was not a fan of. A lot of the time I just was so homesick. I just wanted to go home, like I’d just sit there and be like, I just want to go home. I don’t want to be here, I don’t want to do this. Which, I think is very normal. No one wants to sit through that. But it’s like everyone has a path in life. Obviously this was mine. Don’t know why? But I look back now and 100 percent I’m like what I went through was a lot. A lot for a 14 year old who one was still trying to find their identity. In the period that I was getting chemo and going through life all my friends were going through their stages of life where they got to experiment, got to do things. Were experiencing teenage life and I was like, ‘oh cool I’m getting chemo’.

[00:24:41] Kate: You had to be a bystander in what,

[00:24:44] Siobhan: Yeah.

[00:24:45] Kate: In life. And was that hard to relate then, to your friends?

[00:24:49] Siobhan: So hard. When I went back to school, I remember the first day I walked into the classroom. I looked like a typical cancer patient. I was skin and bones. I reckon I was fitting into a kid’s size six.

[00:25:02] Kate: Wow.

[00:25:03] Siobhan: Um, I was bald as a badger. Couldn’t get any balder. And I just remember walking into that class and seeing a room full of normal 15 year olds and I was like, ‘oh my god, I don’t know how to relate to any of you’.

[00:25:17] Kate: Yeah, because I bet almost the same shock that you had when you saw the children on the ward who were bald and were that typical looking cancer patient. I bet at first you were like, Oh my God, and then. It became your normal and reality to see kids without hair and with a nasogastric tube and things like that. And then to go back into that space that you craved, you wanted to go back to and see everybody, as you said, that typical 15, 14 year old looking, that would have been so shocking and confronting.

[00:25:50] Siobhan: Very confronting and I was probably very confronting for them. Like most of those people probably hadn’t been exposed to someone with cancer. Which is totally normal. And it was very hard to adjust. I struggled a lot going back to school. Some people would complain about stupid stuff, like petty things. And I’d be like, you’ve got no idea what people go through. And I would be like, there’s such bigger things in life to worry about. And you’re worried about who likes who, get over it. I don’t have the best filter. So my mouth got me in a fair bit of trouble when I went back to school.

[00:26:28] Kate: Did it?

[00:26:29] Siobhan: I was just like, no, that’s stupid. And I’d say what I was thinking and a lot of people didn’t like that. Because it was too confronting for them. But I’ve learned to half kind of rein it in. But still a lot of the time I’m like, I’m not here for the drama.

[00:26:44] Kate: Yeah.

[00:26:44] Siobhan: I just want to live my life.

[00:26:46] Kate: Well, you learnt not to sweat the small stuff at a really young age. Where sometimes it takes people a lifetime to learn that. Yeah, you were exposed to some big things. And then so how long were you home until, you know, I meant, I heard you mention that you did sound like you had a relapse. And so how long were you home, whilst you I have no doubt that adjustment back to home was not easy. And was there ever a point it felt normal before you relapsed?

[00:27:14] Siobhan: Oh, I’d settled into, after I finally moved home from Brisbane after that 10 months, into that school life balance, and then went back to work. And then got another job in town, in Grafton so it was, and then got back into my social life, everything was kind of moving quite well. And then finished school, rang the bell, got to do all the fun stuff. Um,

[00:27:38] Kate: Do you mean finish the treatment. Or that,

[00:27:40] Siobhan: yeah, finished the treatment. 

[00:27:41] Kate: You rang the bell, 

[00:27:43] Siobhan: Yeah, rang my bell, broke the bell.

[00:27:45] Kate: You broke the bell?

[00:27:47] Kate:  And so were there any challenges with you having to come back and forth? Were you constantly coming back and forth to Brisbane or were you able to have any support at home?

[00:27:56] Siobhan: In Grafton they didn’t have any sort of facilities for the treatment that I needed. It started back as once a week we’d go up and then it was every two weeks, three weeks, once a month.

[00:28:06] Kate: So taxing on you and your family to have to do that. But I guess it meant,

[00:28:11] Siobhan: Being home, I just would much rather be home. I didn’t, city was not for me. And my family still had a business to run, so

[00:28:19] Kate: Wow.

[00:28:19] Siobhan: It made more sense to be home. And then just go up when we needed. We only lived three hours away from Brisbane, so it wasn’t that much of a drive. So it just made more sense to come home and just manage things from there. We had a pathologist, and I’d go in and get my bloods done and all that sort of stuff. And any,

[00:28:37] Kate: Well supported.

[00:28:38] Siobhan: Yeah, and any issues, I had a GP who ended up being the emergency room doctor that I had the night that I got diagnosed.

[00:28:46] Kate: Wow so they definitely know about leukaemia and were really able to support you in that sense, so your GP was well knowledged.

[00:28:53] Siobhan: Had a good little system going and then, yeah, I reckon it would have been about 18 months after I completely finished treatment. I knew something was up. I knew what was wrong. I was working and I’d come home from work and I’d sleep, and it’d be like that sleep that I’ve known before. Had a couple of bruises, but I was like, oh, nothing big. And then I was riding a horse and I was doing some cattle work one day and just wasn’t paying attention and fell off the horse.

[00:29:22] Kate: You’re there to scare your parents aren’t you? Right, clearly

[00:29:25] Siobhan: Oh I keep them young. That’s what I tell them.

[00:29:28] Kate: Or age them faster, I mean, depending how you look at it.

[00:29:31] Siobhan: It’s a fine line, isn’t it? So it came off it felt, I’ve definitely fallen off a horse harder, that is for sure. But, I was like, half winded and I was like, I’ve got to get back on this horse or I’ll never hear the end of it. So I got back on, finished doing what I was doing and then I had to go to town, had a doctor’s appointment. Went and saw Mum before I left to see if she needed anything in town. And she was like, ‘what happened to your face?’ And I was like, ‘what do you mean?’ She’s like, ‘you’ve got a big bruise on the side of your face. What happened?’ And I said, ‘oh, I just fell off that horse’. And she was like, ‘oh yeah?’ I said, ‘and I’ve got a pretty bad one on the inside of my from where I must have fallen’. And she was like, ‘oh yeah?’ She’s like, ‘how about you just get a blood test while you’re in there?’ And I was like, ‘no Mum honestly, I’m fine. I’m fine’. Anyway, got into the doctor’s surgery, got talking to my GP and mum’s voice in the back of my head and I was like, ‘oh and can I just get like a full blood count? Just want to check where everything’s at’. And there’d been a couple other little incidences as well before this whole blood test thing. Like, I got diagnosed with epilepsy. And when they did all the scans and stuff on my brain, they found out that it was from the methotrexate. So I’ve got like a whole heap of grey matter on my brain. And the best way I can explain it to people is what the chemo’s done is like you got your brain’s like coral and it’s got little fingers on the end and there’s a layer around those little fingers and the chemo’s burnt them off. And when they rub together I have fits. That’s how I explained it to my niece and nephew.

[00:31:06] Kate: Yeah,

[00:31:07] Siobhan: So I had a few tests then, they thought there was some suspicious stuff, but they didn’t really think anything of it. Starting, obviously, a new medication. They thought it might have something to do with that. And then, yeah, I think it was about two months later when I got that done and they were like, I think the test results took about three days to come back. My,

[00:31:27] Kate: This is for epilepsy, not the blood test.

[00:31:29] Siobhan: uh, Yeah, the epilepsy and then probably a day for the blood test to come back.

[00:31:35] Kate: Wow. So it’s a bit longer than last time, isn’t it?

[00:31:37] Siobhan: Yeah, because they wanted to rule out to see if there was anything going on with the medications. So, they ran a few more extensive tests because I think they just didn’t want it to be that. But it was a Sunday afternoon, I’d been out partying the night before with my sister. And I had a bit of a sore head so I was sleeping that off, and then my mum had gotten a call, and she was like, it’s Dr. Andy, and I was like, ‘oh yeah. I was like, okay’. And I sat up and he was like, ‘I’m just so sorry, Bon. I’m so sorry’. And I was like, ‘that’s okay. I know. You can’t do anything about it. It’s not your fault’. He’s like, ‘I’m just so, so sorry’. And I’m like, it’s like, I tried. I was like, don’t lose it on the phone. Definitely hold it in. And then got off the phone and Mum was like, ‘are you okay’

[00:32:32] Kate: Did he actually say the words?

[00:32:34] Siobhan: Yeah, he said, ‘it’s come back, your cancer’s come back, I’m so sorry’. And I was like, ‘Oh, it’s fine you can’t do anything about it. We’re gonna be fine. We’re gonna sort this out’. And he was like, ‘I’m gonna get you in with one of the best doctors at the adults hospital’.

[00:32:49] Kate: Did that even cross your mind? That you would need to change from the children’s to the adult?

[00:32:55] Siobhan: So, he was slowly starting to kick me out before this happened. He was like, look, you’re getting to that age, you don’t need to be at the kid’s hospital anymore. And, at that time I was like, oh, that’s fine. I didn’t think what that meant. So, went through all of that. I don’t know if I was in shock, or if I was just like, in my head figuring out how I’m going to deal with this. I just, there was a little bit of crying, but it wasn’t like hysterical or anything. I said to, I walked up to mum and I said, I want to go for a drive. I said, ‘I want to go to the beach’. And at the time I didn’t have a driver’s licence because of my epilepsy. They canned that for three months. I said to mum, I said, I know this is bad. I said, ‘I just, I want to drive. I want to drive to the beach’. And she was like, ‘no’. I was like, ‘I want to drive to the beach’. And then I think we got onto like a back road and she was like, ‘Okay, you can drive’. And I drove out to the beach and I think I sat out there for a good three or four hours. I went for a swim, sat up on the headland, had a beer.

[00:34:03] Kate: Had you told your mum?

[00:34:03] Siobhan: or two. Yeah, mum knew mum. It was all on speaker. I can’t keep stuff from my mum. Not a very good secret keeper, that is for sure. And then we came home, we stopped in at mum and dad’s pub. One of my best friends was working. I said, ‘you need to go in and get Hayley’. I said, I need to, I said ‘I want her to hear it from me and not anyone else’. And she was like, ‘right’. So mum went and got Hayley and told Hayley and then she came out and we had a bit of a cry together and I was like, ‘oh’. And I forgot what that had felt like, having to tell the people that you love. That you’re not well.

[00:34:40] Kate: Yeah.

[00:34:41] Siobhan: And

[00:34:41] Kate: And watching that too, not only telling that, but then watching that person react to your news.

[00:34:48] Siobhan: And it was hard, but I do feel sorry for them. We joke about it all the time. I’m like, God, I’ve put some trauma on you guys, like.

[00:34:56] Kate: Yeah,

[00:34:57] Siobhan: Sorry for being such a menace, I was like, but that’s life. Life doesn’t always go as you plan. But, got a phone call, I think it was on the Monday. From Dr. Curley, Cameron Curley at the Royal Brisbane and Women’s Hospital. And he was like we want you up here. At this day. And I was like, look I’ve got something on. So I had participated in the local showgirl competition. So they call it the Young Agricultural Person Award now or something, I’m not a hundred percent sure. And I was like, I’ve put in a lot of effort for this. I said and I’d like to be there on, when they announced the winner. I said, I’d like to be there for that. I’ve put a lot of work in it and I’m quite passionate about this sort of stuff. And he was like, ‘Oh um’, and I was like, ‘please, like, I just really want to be there for that’. ‘Rightio, you can go’, he goes, ‘but the next day you have to come up’. So I think the announcement was on show night on Wednesday night. So I went there, participated in that, got the young show girl award for the year. 

[00:36:04] Kate: Congratulations, so glad you were there.

[00:36:06] Siobhan: Oh thank you. Yeah so went to that and then the next morning had my bags packed, had said goodbye to my dog, said goodbye to home again and we drove to Brisbane.

[00:36:18] Kate: And was it harder this time knowing that you were leaving home and going to a new hospital? For you to access treatment not a 20 minute drive like it is for some of us city folks. And it’s, and knowing that you’d done it before kind of somewhat knowing what was ahead. Was that harder this time with more knowing?

[00:36:39] Siobhan: Probably took it in a different direction to that. I knew what was coming, so I knew what I had to prepare for. I knew exactly how I wanted to handle everything. I’d mentally prepared. I was like, this is the mindset that I want to have, this is how we’re going to go through it. My mindset was like, you’re gonna kick it.

[00:36:58] Kate: Yeah.

[00:36:59] Siobhan: You’ve done it once, you can do it again. You’re going to have bad days. Everyone has bad days, but you’ve got to find the good in every day. Not every day is a horrible pit.

[00:37:07] Kate: You didn’t doubt yourself.

[00:37:08] Siobhan: 100% and I also went into extreme organizing.

[00:37:16] Kate: Mm hmm. Sense of control. We love it.

[00:37:18] Siobhan: Yeah, cause obviously previously I didn’t have that because most of the communication went with Mum.

[00:37:26] Kate: So that was a different experience this time.

[00:37:28] Siobhan: Yeah, so I put Mum on the back burner. I was like, you’re just there for moral support.

[00:37:32] Kate: How did mum feel? That I can imagine as a mother myself that would have been, that would be very hard to transition role.

[00:37:39] Siobhan: It was hard, but I think in a way she preferred it. Mum’s a very good support, but organisational, not her thing. I’m like, I need to know when everything’s going to happen. I need to know how everything’s going to happen. I need to know how things work. So the first day we went to the hospital I was super prepared. I had water bottles. I had snacks. I had my diary. I had a notepad. I had everything.

[00:38:05] Kate: You were ready.

[00:38:06] Siobhan: I was so prepared, and

[00:38:08] Kate: Not your first rodeo.

[00:38:11] Siobhan: And I think that kind of took Dr. Curley by surprise, because

[00:38:16] Kate: This 18 year old being so in control and ready.

[00:38:21] Siobhan: Yep, and he walked in and he was like, we’re going to start you on this medication. I was like, ‘Oh yeah’. And he started to tell me what it does. And I’m like ‘no, it’s fine. I know what this does. I’ve had this one before’. I said, ‘Oh, I have been working in pharmacy for the last three years’. And he was like, ‘Oh, okay’. So I had that kind of medication background, and knew where I was standing with all of that. So he’d rattle stuff off and I’d be like, ‘Oh, yep, I know where I’m up to’. So it was pretty funny. He always goes, I just think you should become a pharmacist. I’m like, ‘I’m not becoming a pharmacist, I don’t think I’ve got it’. And he’s ‘no, you’ve definitely got it’. But yeah, so went in like fully prepared. Obviously they do all the tests before they start you with chemo and immunotherapy and all that sort of stuff. So had like skin, bones, kidney function, all the stuff.

[00:39:13] Kate: Because were you looking at having a transplant this time? Is that where you were heading towards? Yep

[00:39:19] Siobhan: So, he was like, we’re going to start you on immunotherapy. We’re going to see how that goes, and then we’re going to move you into a bone marrow transplant. Yeah, a lot of things processing and obviously hadn’t really had as much immunotherapy before. Had lots of chemotherapy, knew how that worked and the immunotherapy wasn’t 100% sure on. So I did a bit of research on that, after I knew what was going on. But yeah, we went and saw a fertility doctor, and he was like, ‘look, this is what we can do. We can do surgery, take an ovary out and freeze it’. He goes, ‘there’s two issues with that’. He goes, ‘at the moment, your platelet count, you could bleed out on the table and that ovary could still have cancer cells in it’. He goes, ‘I’m not really happy about that one’. I said, ‘okay, fair enough’. He goes ‘we can do IVF, like the’

[00:40:11] Kate: A cycle?

[00:40:12] Siobhan: Yeah. And he goes, ‘but we don’t have four weeks’. And he goes, ‘and doing that, you could bleed out on the table while I extract the eggs’. And I was like, ‘okay, not much happening’. And he goes, ‘do you have a partner?’ I was like, ‘I’m 18, no’. And he goes ‘there goes option three’. I said, ‘okay’. He goes. ‘And you don’t have eight months, nine months or whatever it was to have a baby’. And I was like, ‘fair’. And he goes, ‘fourth option, we do nothing’. And I said, ‘we do nothing’.

[00:40:40] Kate: Yeah.

[00:40:41] Siobhan: It was my decision. And I was like, ‘we do nothing’. Because at the time I was, I was 18. And over the years, as I started to get a bit older, I hadn’t really thought about kids. I still, I’ve come to terms with my situation. Not having kids isn’t the worst thing for me. I’ve got some nieces and nephews. Probably heaps of nephews actually. Got a little tribe of them. And then I’ve got all my friends that have kids. So, 100% designated auntie, and I think I’m a pretty good auntie. So I’ve come to terms with that. And it’s something that you have to come to terms with pretty quick. They don’t really give you many truths.

[00:41:16] Kate: I was say, did it take some time? You know I think that, I envision that there wouldn’t have been a lot of time to process because whilst you’re processing that information, they’re almost cooking up the bag of chemotherapy to try and save your life all at the same.

[00:41:28] Siobhan: Yeah, um, and every now and then you have those moments, you’re like, Oh, wouldn’t it be nice? But, that’s life. Honestly, I’m content, I’ve got enough family in my life to keep me happy for a lifetime.

[00:41:42] Kate: Yeah. I think it’s becoming a lot more common now. And I’ve spoken to a number of people and had them on the podcast, where they’ve either gone down the road potentially of egg donation or things like that. Although the child, may not have come from your own ovary I think there’s so many new ways and options and that potentially can still make you a parent. But as you say, it’s becoming content with where your life has unfolded. And if, and being an auntie and being an auntie of children’s friends. is a beautiful role and one with so much love and, fulfillment still.

[00:42:21] Siobhan: 100% yeah. It’s just one of my friends at the moment. She’s got a one and a half year old and a four year old, and I spend quite a bit of time with them. My sister Sigourney, her two little ones, so, Mac is nine and Frank is seven. I spend a lot of time with Sigourney’s kids. That’s part of the reason I moved to Inverell was to be closer to Sigourney. She’s one of my best friends in the entire world. And to be a part of her kids lives. I go to school pick up.

[00:42:52] Kate: It fulfills you.

[00:42:53] Siobhan: Yeah. So, they’re a big part of my life and even though they drive me up the wall, they’re still some of my favourite people in the entire world.

[00:43:02] Kate: Yeah. Yeah. And that’s so beautiful. And it’s so special that you have that role for anybody to hold a role as an auntie is an honor. And yeah. 

So I know that you’ve mentioned and just thinking of time. I know that transplant, it was a ride for you. And I know, and I don’t want to skim past it, but I, I also don’t want to miss out on the conversation that you and I have had in regards to an invisible disability. And potentially some of the side effects that you have struggled with or have encountered post transplant. And I think that it’s a really, you and I are both in agreeance, it’s an area that’s not spoken about enough. And not highlighted enough that people post transplant, although people may see them as recovered and looking well. Like I look at you now, if I was just to judge now, I see you sitting there with long, beautiful hair, looking really well in the face. But I also know that that may not be reality inside. And that’s something that society just quite hasn’t got their head around.

[00:44:15] Siobhan: Yeah, definitely not. So Bone marrow transplant. I was lucky enough to have all three of my siblings tested. They were all perfect matches, which is very rare.

[00:44:26] Kate: I was about to say it’s very, very rare.

[00:44:28] Siobhan: Yeah, so my sister Courtney was my donor. And we got it done on the 6th of September. So in a couple of weeks, so I’m five years post bone marrow transplant.

[00:44:39] Kate: Wow. Happy birthday.

[00:44:42] Siobhan: Thank you. It seems very surreal, but yeah, the transplant, like the preparation for it, bit of radiation, bit of chemo kind of ride that wave. I was very, very lucky with my radiation and everything. Didn’t get very sick like I did with the chemo just rode that wave post transplant. I think I was about 10, 15 days post transplant and one of our family friends passed away. And, yeah, bit of a rocky road through that. And then I think maybe the day after he passed away they came in and did some tests and I had gotten graft versus host disease. It was attacking my skin. Obviously, first time with a bone marrow transplant, didn’t really understand why my skin was so dry. I thought it was part of the hospital, like being in hospital, being in bed. The air con, stuff like that. So didn’t really think too much of it. And then I said to one of the nurses, I said, ‘Oh, this is, my skin’s just flaky and disgusting’, and she was like, ‘hold on a moment we’ll go get the doctor’. Got that test done, and then I was adamant to make it home for the funeral. So I did everything in my power to get well enough to be let out. I was walking around the ward probably half the day. I was eating. I didn’t get mucositis, which I am forever thankful for. I was very lucky. They tried a nasal tube, but I was not having it. I think everyone that they put in, I threw back up and I was like standing there. I was like, you need to take it out. I can’t do this. So made it out. I think I got out at like 21 days post bone marrow transplant, so I was outta there.

[00:46:29] Kate: You weren’t standing around if you need it. You were checking out.

[00:46:32] Siobhan: No, I was out. I was definitely out. I remember when we were leaving the hospital and they got my little pharmacy bags ready and they rolled on out with three big bags of medication. And I was like, ‘oh God, I forgot. I forgot what that was like’.

[00:46:47] Kate: Yeah. Yeah.

[00:46:49] Siobhan: The first notice of graft versus host wasn’t too bad. The skin was just really dry. Got put on the prednisone and a few other steroids and immunotherapy drugs. Hit my immune system suppressed long enough so that everything would mellow out and kind of level out and my body could adjust to everything like that. And it was going really, really well. It was probably the Christmas of 2022, and I’d lost a heap of weight. I had really stiff joints, my skin was so tight. And just even bending down to tie my shoelaces was excruciating. I pushed it off for a fair bit cause I was like, ‘Oh, maybe it’s just a side effect from one of my medications’, one of my immunotherapy, medications, like maybe it’s just one of those maybe it’s because my immune, suppressants are a bit out of whack and just was like going and getting blood tests. And then in a space of about like two, three weeks, my skin like flared out. It was like I’d touched myself and it would just like flake off and it was, had brown patches all over my arms and it like attacked my face on either side, attacked my arms, attacked my legs. So went to Brisbane, got some tests done, got a check up went to the dermatology department, they were like ‘it looks like you’ve got lupus’. And I was like ‘what’s lupus?’ And they were like, ‘Oh, it’s like an immuno, autoimmune disease where it attacks your skin and a few other issues’. And I had, a fellow, I had a resident, like I had about four or five doctors in there and the head of dermatology and he was like, ‘it’s unusual, like I don’t really understand what it is. It looks like this, but it’s not this’. Anyway, they sent the results back to oncology. Went and saw my oncologist, he said, ‘it’s graft versus host’. There was just nothing about it, he knew exactly what it was.

[00:48:46] Kate: No question.

[00:48:47] Siobhan: Yeah,

[00:48:48] Kate: Though you’d gone to the right specialist, maybe in first place, it’s. And it’s hard, it’s when, and I think when you read, because what day were you at this point day? Were you like a hundred days post.

[00:48:58] Siobhan: Oh, over a hundred days post.

[00:49:01] Kate: And that’s the tricky thing, right? Because you do, you kind of lose those, those acute hematology supports and it’s

[00:49:08] Siobhan: Yeah,

[00:49:09] Kate: It could always be something else, but

[00:49:12] Siobhan: And you fall, like after the hundred days post and everything’s you fall into this sense of, oh it’s okay now, like everything’s good.

[00:49:19] Kate: Yeah, nothing’s connected to the leukemia or the treatment or the post transplant recovery.

[00:49:25] Siobhan: No so after that and then I was like, not on any sort of steroids or anything, which I was so happy about. And then, after that, he was like, oh no, you graft versus host back. And it’s not like it’s pretty. It’s not severe, but it’s getting there. And I was like that’s probably on me for being a bit naive.

[00:49:44] Kate: But did you have the information that you needed? Were you equipped with the knowledge of, oh, this, could still happen like post a hundred days?

[00:49:54] Siobhan: But not really like, after that kind of a hundred day period, you just tossed to the wolves, but not really. Cause you’ve always got that support there, but

[00:50:04] Kate: Yeah.

[00:50:05] Siobhan: I was living 60 hours away from Brisbane. My normal GP never come into contact with someone with this amount of medical history at such a young age. Like for him it was quite an unusual thing. like I’m in the GP all the time. I had to get a new GP and he was like, I don’t even know what half the medication is you’re taking.

[00:50:27] Kate: That’s not comforting.

[00:50:28] Siobhan: I’m like, don’t worry. I know what I need to take. It’s totally fine. And that probably has something to do with our region’s health system. Like we don’t have access to GPs at the ready. Like, I know there’s people out there who haven’t seen a GP in over three years, because we don’t have them in our town.

[00:50:47] Kate: Yeah, and I would envision too, and it’s a very common thing I hear from people is that you can have a GP in your little town and then the next time you go to go see them within that next month, they’re gone. And the consistency, there is something that when I talk to people, I really emphasize the importance of a really good GP and really good relationship with a good GP because it’s fundamental to your health and your ongoing recovery and your end diagnosis as well. It’s so important to have that localised support. They don’t need to know everything in their specialist area, but to have that connection and support when you need it.

[00:51:29] Siobhan: But, living with graft versus host now, like I wake up every morning, I take a mouthful of pills, I go to bed, I take a mouthful of pills.

[00:51:40] Kate: Has it impacted your life in other ways, like physically and,

[00:51:44] Siobhan: Yeah, so obviously with your steroids you get the typical steroid weight gain, you get the mood swings, you get the appetite. Like it’s just, it’s a whole range of things and especially being a younger woman and that impacting your hormones and stuff as well.

[00:52:04] Kate: Because did you have to go through menopause earlier?

[00:52:06] Siobhan: Yeah, I did.

[00:52:08] Kate: Yeah, that’s so hard.

[00:52:09] Siobhan: Yeah, it really, like, it’s so hard to talk cause no one else relates?

[00:52:14] Kate: Yeah, they don’t, do they? To be a young woman already gone through menopause before potentially some mothers, and your friends.

[00:52:23] Siobhan: It’s hard, probably one thing that I don’t really talk about with anyone, very embarrassed, sorry.

[00:52:29] Kate: No, that’s okay, Siobhan.

[00:52:31] Siobhan: I know it’s nothing to be like, ashamed of if everyone goes through it which is something I was hoping I wouldn’t go through until a lot later in life. But, you just gotta roll with it, really.

[00:52:41] Kate: That has been your catchphrase and you do. And it doesn’t make it any easier or doesn’t make it feel any less unfair.

[00:52:48] Siobhan: Yeah.

[00:52:49] Kate: And I’m putting words in your mouth, but it, does it feel like it’s almost, it’s another loss, like another loss of what it’s taken from you as well.

[00:53:02] Siobhan: Yeah, and especially being a young woman and wanting to go out there and do your whole dating experiences and stuff like that. It’s something that you’ve got to keep in the back of your mind because you’re not like every other 23 year old. Or, and like, that’s another thing that I say. Recently started my new job out at the abattoirs and they were saying something and I was like, ‘oh yeah, like I’m just having to figure out like my work life balance, especially with my health issues’. And one of the supervisors that I have was like, ‘oh, you have health issues?’ And I was like, ‘yeah’, he’s like, ‘you don’t look like it’. And I was like, ‘yeah, I know’. I said, ‘but not every health issue is visible to the eye’. This is what I’ve been through. And it’s just something that you shouldn’t like, not that I should have to, that it shouldn’t be closed off, but it’s just something that like, every time I’ve gotten a new job, like it’s something that it’s the first thing that I tell them, like I have health issues. Sometimes I’m down and out of the count for a week. Sometimes, a general cold can put me in hospital for two weeks. It’s definitely something that because looking so healthy.

[00:54:10] Kate: And is it different? I mean, you’ve gone from having an illness that people could definitely identify. ‘Oh, she’s unwell’. And as hard as that was to now transitioning into looking quite well on the outside, you know, if you were to pass you on the street, is that just as hard as well? Did that take you by surprise?

[00:54:30] Siobhan: I’m gonna honestly say that it’s probably harder. Because when you look well and you sound well everyone just automatically expects that you’re able to do everything that everyone else does.

[00:54:42] Kate: Yep.

[00:54:43] Siobhan: And I do try to do everything that everyone else does.

[00:54:46] Kate: I have no doubt you do.

[00:54:48] Siobhan: I try not to limit myself to anything. And I honestly try not to let my health dictate my life, but there are a lot of times where it does. And Just like simple things. Like I work a 38 hour week but my start times are quite irregular. So I start at 3am and finish at 11am. Managing that, managing when I can fit my medication in between work meetings, doing my general work duties. And then still coming home, trying to figure out my work life balance, and then still remembering to keep up with all my doctor’s appointments, all my blood tests, making sure I’ve got all my medication. There’s a lot that goes on behind the scenes and my biggest thing is I never look at someone and go, yeah, you might be having a bad day, and like, you might be in a bad mood and that makes you a bad person. That’s definitely not it. Like, there are some days where I’m like, the world is against me. Don’t look at me, I’m about to cry.

[00:55:46] Kate: Yeah.

[00:55:47] Siobhan: And other days I’m like, no, I’ve got this, I’ve got this down pat. But there has to be less judgment around people with invisible illnesses. And, even now I was just at one of the local pubs in town. And I’ve got like big lupus spots. I don’t know, you probably can’t see them. They look like they’ve been punched in the face. Like they’re quite prominent. I try and cover them up. And an older gentleman was like, ‘who have you been in a brawl with?’ I was like, ‘’pardon?’ ‘you’ve got two big black spots on your face’.

[00:56:18] Kate: Oh,

[00:56:19] Siobhan: And I was like. ‘Oh, no, I actually have an autoimmune disease that attacks my skin, these are, this is scarring’. And people are like ‘Oh’, they don’t know what to say to that. And it was something when my hair was growing back when I was sick, people were like, ‘Oh, did you shake your hair off for cancer?’ I’m like, ‘no, I had cancer’.

[00:56:38] Kate: Yeah. It is funny how people think commenting on people’s appearance is okay, And it’s not. A note came through from my daughter’s school, there was some issues and bullying going on. And then something a teacher said, I was like, you know what, I really like that. And they said, if somebody can’t change something about themselves within 20 seconds, you just don’t mention it. Because if it’s helping them get something off between their teeth or their face or whatnot, don’t say it. But if it’s something that someone physically can’t change or you’re, noticing something on someone that is not the usual, don’t, you don’t need to mention it. That’s not helpful.

[00:57:20] Siobhan: Definitely not.

[00:57:21] Kate: Oh I am so sorry that was your experience, that was horrible.

[00:57:25] Siobhan: Oh, and over the years I know it’s bad, but I’ve just, I’ve found that shocking people. Being like, no, this is why, refrains. I tell people all the time, I’m like, oh no, I just tell them straight out exactly what’s happened. And they’re like what happens? I’m like, probably stops them from doing it to someone else.

[00:57:42] Kate: Very true.

[00:57:42] Siobhan: I’m like, the amount of people that are like, oh, you’re going to have kids later. I’m like, no, I can’t have kids. And they’re like, but why? And I’m like, do you want to know why? Because I will tell you why. It’s just some things that you shouldn’t say, don’t just spit things out of your mouth because you don’t know what someone’s going through.

[00:57:59] Kate: Yeah, absolutely. You know, as you say, you’re almost coming up to five years post bone marrow transplant. And I think a lot of people think I just need to get to that 100 days and it will be better, or this will be behind me. And this isn’t to doubt and to get rid of that hope, but it’s the acknowledgement of that the road is still there, isn’t it?

[00:58:22] Siobhan: Very long. And it’s long. Sometimes it’s bumpy as all hell, and sometimes it’s smooth as anything. But, you’ve just, I know, been like take it in your stride, but not everything’s gonna be terrible forever. Like, you just kinda gotta think of all the good things. And they are hard some days, like some days I’m just like, I don’t want to do this anymore.

[00:58:47] Kate: You’ve got to surrender to the feelings.

[00:58:49] Yeah, and I don’t want to wake up every morning and I don’t want to have to take medication that’s pretty much keeping me alive. I don’t want to do that. I don’t want to have to spend a fortune on medication, but I have to. And if that’s a small thing that I have to do to keep going, it’s what I’m going to do.

[00:59:06] Kate: You look at the things that you can control and take control of.

[00:59:09] Siobhan: Yeah, and for anyone else that’s going through this it’s gonna get better. It always gets better.

[00:59:14] Kate: Yeah.

[00:59:15] Siobhan: Not every day is gonna be the same. Not every day you’re gonna be feeling 100%. Not every day you’re gonna be jumping out of your skin and have the best day of your life. But, we’re here, we’re still doing it, we’re kicking along.

[00:59:27] Kate: And I think our conversation today has been a really beautiful representation of the highs and the lows. If I, thinking as what we’ve spoken about, there’s been some really beautiful high moments and achievements that you’ve still been able to have through some really dark and heavy time in your life. And we’ve identified many of the lows and some of the really hard things that are still with you and that walk alongside you in this blood cancer journey. But what I know and what I can see is that you are incredibly resilient and you’re adaptable. And I think that message and what you’ve been able to articulate today will resonate with so many.

[01:00:08] And yeah,

[01:00:10] Siobhan: I really hope it does.

[01:00:11] Kate: It can’t not, you know, why? Because it’s an honest telltale of your story.

[01:00:15] Siobhan: And like I said to you before, I’m an open book, I’m not gonna glamorise and be like, ‘Oh no, everything’s perfect!’ Not everything is perfect. I’m not gonna cry, poor me, I’m not gonna cry, I’ve had the worst life. Because I really haven’t, I’ve met some absolutely incredible people through the things that I’ve done. Places that I’ve been. And as terrible as it is, I probably wouldn’t change it. Made me the person I am today.

[01:00:42] Kate: Yes.

[01:00:42] Siobhan: I might be a bit rough around the edges, but I am grateful that I’ve gone through something and lived.

[01:00:49] Kate: Yeah.

[01:00:49] Siobhan: And. you just gotta take it one day at a time. And it’s a tough journey. Like, it’s not gonna be all smooth sailing. And,

[01:00:56] Kate: Yes.

[01:00:57] Siobhan: But, one day you’ll look back and you’ll laugh. And you’ll be like, oh my goodness. Here we are. Like, I am a big believer that laughter is a great medicine. I make lots of jokes about the stuff that I’ve been through. That’s my coping mechanism. Because if you don’t laugh, you’ll cry. No one wants to see people cry because,

[01:01:21] Kate: No.

[01:01:22] Siobhan: It makes everyone sad.

[01:01:23] Kate: And the thing is, is that, what, you take a lot of medicine daily. And for you to be able to say that laughter is truly the best medicine well, I take it from you because you’re taking a lot of other things. So, you know, the true power of it. And I think it’s about the shifting of the energy in yourself, what laughter does, you know, there’s communities that are out there that are laughing groups to help change the energy in it. And it’s, from what you’re saying, it’s really about having that perspective. Is that it’s not always going to be like this and it’s choosing to also have that perspective because it’s not easy and it’s something that needs to be practiced daily. But some days you don’t have to practice it more than you would other days.

[01:02:04] Siobhan: Yeah, and not every day did I believe in myself. Oh God, no. I still don’t believe in myself every day, but I believed in the people around me. I knew that I had their support and their love. Like, it’s gonna be okay.

[01:02:19] Kate: Yeah.

[01:02:20] Siobhan: Even if, when it’s not, it’s still gonna be okay.

[01:02:22] Kate: Yeah. It is what it is. But Siobhan thank you enough for sharing your time and your story and you will truly resonate with so many people and we here at the Leukaemia Foundation, you know that we’re a big fan of yours and we wish you all the very best. And we hope that the bumps in the road are a little further apart than what they have been at times. Yeah. So thank you so much.

[01:02:51] Siobhan: No worries, thank you so much for having me. It’s been an absolute blast.

[01:02:55] Kate: Our pleasure.

[01:02:56]