The power of positivity: Sharyn Polce on relationships, mindset, and blood cancer journey

[00:02:37] Maryanne: Hello, my name is Maryanne Skarparis. Welcome to Talking Blood Cancer. Today I have the pleasure of the company of Sharyn Polce. Thank you for joining me, Sharyn. 

[00:02:49] Sharyn: Happy to be here. Can’t wait. 

[00:02:50] Maryanne: Lovely. Now Sharyn, a little bit about you. We like to share a story about the person, where they are in Australia, ’cause we are a national organisation. Just a little bit about you and where you sit in Australia, and your adventure with blood cancer. 

[00:03:07] Sharyn: Okay, so I live in Perth, Western Australia. Fairly close to Fremantle if anyone knows it. I am almost 55 years old. I’ve got two beautiful adult children, 35 and 31, both married. The 31-year-old just got married. I have a wonderful partner, who actually met me two years into my journey and hung around. 

[00:03:28] Maryanne: Wow, how wonderful. 

[00:03:30] Sharyn: He’s been through the ringer, if you think I have, he’s been through worse. So it’s always harder for the carer than it is for us, I believe so. 

[00:03:38] Maryanne: What a lovely acknowledgement, ’cause I do think it’s hard for both, but it’s a lovely acknowledgement from a patient to say it’s hard for the carer. 

[00:03:45] Sharyn: I really believe that, and we can get into that later, but we know our bodies, they don’t, and they just wanna fix us. So I just think it’s a lot harder for them. I was diagnosed almost 15 years ago in August of 2010, two weeks after my 40th birthday. So happy birthday to me. 

[00:04:04] Maryanne: Wow. What was happening with you, Sharyn? 

[00:04:06] Sharyn: So, I was unwell, obviously. I had been working out. Which is unusual for me because my 40th birthday was coming up and obviously we always wanna look great for our milestones.  

[00:04:15] Maryanne: Yes. 

[00:04:16] Sharyn: And I’d been going to this gym and not really thinking much of it, had lost a great amount of weight. Probably about 11 kilos in about six months, but thought it was me doing such a great job. But didn’t think anything of it as working mums or working women, we just keep going, you know. And I was actually in a passport office doing my passport to go to Bali because we were celebrating a couple of weeks later. And I started to get some chest pains and being a hypochondriac, I had migraines quite often. So I thought, oh, it’s just a migraine causing a stroke or something like that. Never thought anything. 

[00:04:47] Maryanne: Oh dear. 

[00:04:48] Sharyn: I know, overdramatising it. I was fine, but I was getting shorter of breath. So I said to the person I was with at the time, “I think I’m going to go to the doctors just to get checked.” Kept working. Just reassuring them that I would go to the doctors. And in about half an hour, my shortness of breath became really bad and I could only get breath in. I was.. 

[00:05:09] Maryanne: Oh wow. 

[00:05:10] Sharyn: So I went straight to my doctor, who I’ve been with for, since I was 16 years old. And they put me straight in and said, “Look, seems like you’ve got a collapsed lung. You are not breathing properly. Have you had a cold, a cough, anything?” Had nothing.  

[00:05:24] Maryanne: Wow. 

[00:05:25] Sharyn: So he said, “We’re rushing you straight to hospital.” I was like, “Don’t be silly, I’ll drive.” So the hospital was five minutes away, drove myself there. Collapsed in the car park. I was taken into emergency and resuscitated. And they came to me and said, “Look, we don’t know what’s wrong, that there appears to be a mass in your lungs.”  

[00:05:40] Maryanne: Oh my goodness. 

[00:05:41] Sharyn: So we went to have tests. Cancer was not a thought in my body, at all. Not a thought. During that time, my daughter called and she said, “Oh, mum, on the way from work today, can you go to the shop?” 

[00:05:51] Maryanne: Yes. 

[00:05:53] Sharyn: As I do.  

[00:05:54] Maryanne: How old was she? 

[00:05:55] Sharyn: She was, my son was 16, so she was just over 20, almost 21. And she was working at one of our biggest hospitals here as a EA at the time. And I said, “Darling, I’m in emergency in Murdoch. I don’t know what’s going on.” She said, “I’ll be there straight away.” She went straight to my son’s school, picked him up and came. None of us obviously thought what was coming. Within about two hours, a beautiful doctor who was on his rounds there came in and said, “Look, I’m really sorry, but you’ve got leukaemia and it looks like you’ve had it probably for about 18 months to two years with your count.” He said, “Your white blood cell count should be between, I don’t know, 10 and 13,” I think he said, or seven and 13, and he said, “Yours is 498,000.” 

[00:06:35] Maryanne: And nothing had been picked up in that time.  

[00:06:37] Sharyn: Nothing had been picked up. 

[00:06:38] Maryanne: 12 to 18 months is an extended period of time, really isn’t it? 

[00:06:40] Sharyn: It is. Yeah. The only thing that I thought back to that maybe we could have found it sooner was I broke my ankle and it didn’t heal.  

[00:06:48] Maryanne: Right 

[00:06:49] Sharyn: It took about six months to heal, but none of us thought anything of it. 

[00:06:52] Maryanne: No. 

[00:06:53] Sharyn: From there on in, my daughter jumped into action. She’s a bit of a fixer too. And called her heart surgeon, who she works for, and said, mom’s just been diagnosed, who’s the best haematologist in Perth? And he said, Dr. Andrew McQuillan. And he was actually the doctor that was on rounds. And so we started a relationship from that day and until transplant, and he was amazing. He was like family. So I went straight into a clinical trial and that was my first clinical trial. 

[00:07:19] Maryanne: So what were you, you were diagnosed with leukaemia.. What..? 

[00:07:22] Sharyn: With chronic myeloid leukaemia. So CML.  

[00:07:24] Maryanne: CML. Okay. So your initial introduction to treatment was a trial drug. 

[00:07:31] Sharyn: I just heard leukaemia and thought, oh.. 

[00:07:33] Maryanne: Of course. 

[00:07:34] Sharyn: Full chemo straight away. And they popped me on the hydroxyurea and said, “Look, this is one we can manage. It’s not bad. We’re putting you on a clinical trial.” I think that was for Gleevec at the time. I’m trying to remember. 

[00:07:45] Maryanne: Yeah, Gleevec. Probably back then. 

[00:07:47] Sharyn: Yeah. And then I stayed in there for about six weeks. Till they got some sort of, my spleen. What had happened, the reason that my breathing was bad. I’d had a spleen infarction, so my spleen had pushed my diaphragm up and I could no longer breathe properly. So that’s why I was in hospital for so long trying to get that down.  

[00:08:04] Maryanne: Right. 

[00:08:05] Sharyn: Because they didn’t wanna cut me open and take that.  

[00:08:08] Maryanne: No. 

[00:08:09] Sharyn: Yeah. But apparently, when they were trying to take blood from me, they tried for about two hours and it was like sludge. They just couldn’t get any out. 

[00:08:15] Maryanne: Goodness. And that was just a sudden onset of a chest pain. Were there other indicators, or? 

[00:08:21] Sharyn: I was tired.  

[00:08:22] Maryanne: Tired, yeah. 

[00:08:23] Sharyn: All working moms are tired.  

[00:08:24] Maryanne: Yes. 

[00:08:25] Sharyn: Single working moms. I did have a bruise on my leg that, funny enough, one of the people at the gym said “That bruise Shaz, go get it checked out. It hasn’t gone away.” When I was a kid, I used to bruise all the time and never thought anything of it. They hung around and I just ignored it, so that could have been a sign. But the first thing my doctor said to me was, “Were you tired?” I said “That’s not a symptom. We’re all tired all the time.” So. Yeah there was nothing. 

[00:08:50] Maryanne: You know what Sharyn, that is often the thought of a woman, a working mother of two. We’re always tired. 

[00:08:57] Sharyn: Yep. 

[00:08:58] Maryanne: So I can understand you thinking, “Oh well, and I’ve started the gym, but I’m managing a lot. I’ve got my work, I’ve got the kids, um got my routine. I’m tired.” 

[00:09:06] Sharyn: Yeah. And you just keep going. 

[00:09:08] Maryanne: You keep going. So when you got that diagnosis of leukaemia, you placed your trust in your specialist Andrew McQuillan. Now, what was it like for you emotionally? What changed? Can you reflect and remember? 

[00:09:24] Sharyn: Oh yeah, I can remember very clearly, and I’ll never forget that day. And it actually gets me quite emotional because you hear leukaemia and you automatically think that’s it. Prior to that, which I think is exacerbated my emotions was that one of my best girlfriend’s daughter had passed from leukaemia three months prior. 

[00:09:43] Maryanne: Oh, Sharyn. 

[00:09:43] Sharyn: And she had ALL, and so my kids went to pieces. 

[00:09:47] Maryanne: Of course they would’ve. 

[00:09:47] Sharyn: Until my daughter sort of brings herself back very quickly. But they knew this child, she was very close to us, so they just automatically fell apart. And that’s when my doctor said, “Look, if she’s gonna get one, this is the good one to get.” Which I’ve heard so many people say their doctor have said to them. 

[00:10:04] Maryanne: Yes. 

[00:10:04] Sharyn: CML’s the good one. 

[00:10:05] Maryanne: Yeah. 

[00:10:06] Sharyn: But it was very. I’m a go, go, go. I don’t stop and I struggle to stop. And so having to lie up in hospital for six weeks was very tough and slow down. And I had to take it seriously. Stupidly, I went straight back to work. My boss was amazing. He’s now a personal friend of mine for 25 – 30 years. And he was my boss at the time and I flew to Adelaide about in the eighth week. I’ve just started the trial and I was just getting used to the drug. And I fainted over there and that was it. I took three months off work, so.. 

[00:10:37] Maryanne: Good.  

[00:10:38] Sharyn: I had to slow down. 

[00:10:38] Maryanne: It was a pivotal time that said stop. 

[00:10:39] Sharyn: It was, it was, but it was a very emotional time for all of us because as I said, I was a single parent. The kids were reliant on me a hundred percent even though they were semi-adults. My daughter stepped in. She was amazing. I had a great community around me. I had really close, not family, but really close friends that sort of stepped in and helped with everything. 

[00:10:59] Maryanne: Isn’t that lucky? You look at those treasured memories and the connections we make, connections are important in life, aren’t they? 

[00:11:06] Sharyn: It’s everything. It’s everything. Because if you don’t have a support network. I struggled on the personal front, I was going through a breakup as well at the time. So yeah, that was very tough. 

[00:11:17] Maryanne: Personal reflection, too. 

[00:11:18] Sharyn: Mm. 

[00:11:19] Maryanne: If, you know lots on loss, loss of health, loss of a relationship. Change, that adaptation to change. Not an easy time for you. 

[00:11:27] Sharyn: Yeah, and the changes that the drug does to you. 

[00:11:30] Maryanne: Of course. 

[00:11:31] Sharyn: You don’t expect there to be so much. But just physically, emotionally, mentally, I was a different person ’cause I was on a lot of painkillers. The bone pain kicked in pretty quickly. After that, I went back to work after about three months, but I worked probably for the first year and a half, two years without too much interruption. The drug worked, but then stopped and then started again. So yeah. I don’t know how quickly you want me to get into my change of medication, but.. 

[00:11:56] Maryanne: Just before we get into that change of medication. I always think it’s important to share, especially in these settings, when people are listening to how the choices that people made, at quite challenging times. And in that initial phase when you have your world turned upside down. It’s something that you haven’t chosen for yourself, but it’s something that’s presented in your world. What can you remember was the pivotal thing that you chose to do that really helped you get through? 

[00:12:23] Sharyn: So I am a bit of a dag. I’m always positive. I’m always upbeat to the point where probably like at four thirty in the morning when I expect my partner to be in the same happy mood that I am, it can be quite annoying, I guess. But that’s me. So I got myself together. Thought about the plan ahead and stayed positive. If you had met me in probably even the first six months, you’d have no idea I was sick. 

[00:12:48] Maryanne: That’s actually quite remarkable. That’s a real attribute that you hold, Sharyn. 

[00:12:53] Sharyn: Yeah, it’s everything. Mindset is everything. So I was very lucky that I had that in me already, because it helped me sort of not just fall in a heap. Trust me, over that 12-year period, I did a couple of times, because I was terminal a couple of times. But you’ve just gotta think. So there’s always somebody worse off out there. Speak to people, don’t be afraid to reach out. That was my big thing. I never reached out for help. I did everything on my own, and I realised that it was time I had to do that. 

[00:13:20] Maryanne: So can we talk a little bit about that? You mentioned that you were initially diagnosed, so the trial drug that you were placed on managed your condition for a two two-year period. 

[00:13:31] Sharyn: Probably for about 18 months, 12 to 18 months, in that last six months of the 18 months slowed down.  

[00:13:36] Maryanne: Okay. 

[00:13:37] Sharyn: And my BCR-ABL went through the roof, which is my numbers. So they had to look at changing me, and then I went on a second clinical trial. But during that time, in my first week in hospital. And that is tough in itself because they place you in a chemo ward.  

[00:13:53] Maryanne: Yeah. 

[00:13:55] Sharyn: So you know, even though you are not probably as sick as half of those people in there, you’ve gotta keep your head straight. Because I had two people die on the first night I was there. 

[00:14:02] Maryanne: Goodness that’s confronting isn’t it. 

[00:14:04] Sharyn: Very confronting. And you. You’ve gotta come to the terms that you’re now a cancer patient, and that’s something you don’t ever wanna believe or put in your head or claim. That’s correct.  

But I had the Leukaemia Foundation visit me from that very first week. The emotional support, they offered financial support. They offered to speak to my kids. I could not say any more positive words about the Leukaemia Foundation from that very first week throughout my entire 12-year journey. 

[00:14:32] Maryanne: How beautiful, Sharyn and how lucky we are to have those staff members over there in Perth who were able to be there. A lot of volunteers to be there for you. Yeah. That’s nice. So moving forward, what’s the treatment and what was the plan? 

[00:14:46] Sharyn: So it kind of happened. It’s really weird. I would develop a mutation. 

[00:14:52] Maryanne: Right. 

[00:14:53] Sharyn: And it would always happen around the 18-month, two-year mark. So I was through, I think three or four, I’m pretty sure it was four clinical trials, three to four clinical trials. 

[00:15:01] Maryanne: Okay. 

[00:15:01] Sharyn: And each time I had to come off the drug, be off it, go through the withdrawal of that drug. Manage that withdrawal and that pain that would kick in. And then be put on the next drug, get used to those side effects, and what have you. The monitoring, it’s very hard to hold down a job. You’ve gotta have bloods every week when you’re on the clinical trial. It’s gotta be at the same place. All of that. About, yeah, two years that I met my partner, so that’s where the support just overloaded. He’s a wonderful man and has a wonderful family. 

[00:15:30] Maryanne: Can we just sit with that just for a little, a little minute because relationships are really valuable. And sometimes, correct me if I’m wrong, but sometimes when people are faced with a life-threatening illness, there’s a reluctance to actually put themselves out there for a relationship. So, can we just share a little bit about where you were at emotionally? And how you met and how you felt about yourself? And if that’s alright, if you’re comfortable? 

[00:15:56] Sharyn: Yeah, yeah, of course. Very comfortable. I was at a crossroads. I was really unwell, but I was back working full time.  

[00:16:02] Maryanne: Okay. 

[00:16:03] Sharyn: But I lost a lot of self-confidence because the drug I’d put on weight, lost weight. Mentally, I was not all there, but my memory was a bit fuzzy. It was just tough all round. And we met by coincidence, really. His cousin introduced us. I was at a work function and the very first night he said, “Tell me something interesting about yourself.” And I said, “I’ve got leukaemia.” And he said, “What do you mean? Um, tell me more.” And we caught up. We spoke about it then, and then we caught up about three months later, we had lunch. He continued to.. Kept in touch and I contacted him on his birthday to say Happy birthday, and he said, “Can we have lunch?” And I said, “Yeah, no problem.” And we’ve pretty much been seeing each other ever since that day. And he never faltered once. He learned about leukaemia, he did everything. He was at every appointment. Even in the early days, probably about six months into our relationship, the drug stopped working. My mutation went really bad. I ended up in Hollywood Hospital and I was terminal. 

[00:17:06] Maryanne: Wow. 

[00:17:07] Sharyn: So he didn’t know what he was taking on. We found another clinical trial and we went on that. So he’s been through every single step of the way. Even after that clinical trial failed, we had to move to Adelaide. And he up stumps and moved with me.  

[00:17:21] Maryanne: Wow. 

[00:17:22] Sharyn: Came over there, lived in the Leukaemia Foundation for three months. Gave up his family, his job, everything to come and be with me. 

[00:17:27] Maryanne: That’s committed. So I would imagine then you would be blessed with a very open and honest communication. About raw emotions, about hopes and dreams, about let’s make a plan with what we have, about how we spend time. How did that look for you, those conversations? 

[00:17:46] Sharyn: When I met him, it was two years after I was diagnosed. I was about 42. He didn’t have children or he doesn’t have children. He was willing to take mine on, which was amazing. But I did say to him, “Before we get into this, you need to make a decision because if we spoke to my doctor, if you wanted children. I can do it, but I have to come off all the medication. And there’s a chance I won’t be here after that.” So he just said, “I’d much rather have you alive than children without a mother.” So we made that decision and we moved forward and yeah, it’s just incredible. 

[00:18:17] Maryanne: That’s a very raw conversation to have, really, because you are obviously on the same page in that decision-making, which is a blessing for the two of you. But there are often people who, even the patient wants to have a child and the carer wants them to be alive. But that sort of presents a lot of challenges in outcome. 

[00:18:39] Sharyn: Yeah, definitely does. And like you said, we always were very open. I know he struggled sometimes with my mood swings. 

[00:18:46] Maryanne: Yep. 

[00:18:47] Sharyn: And things like that because the drugs and the painkillers, they do change you. And you know, when you put weight on, then you become a bit, not depressed, but you lose your confidence. And I was always a confident person. So for him to have to sort of see me like that was very difficult as well. 

[00:19:01] Maryanne: Yes. 

[00:19:02] Sharyn: And for him to deal with that. So it makes it very challenging. But like you said, we were always hundred percent honest and upfront with how we were feeling, angry, sad, whatever it was. And we got through it. And that’s the thing, as long as you are a hundred percent honest and you actually relay your emotions. And don’t be afraid to, or don’t be afraid to ask for help or say you need time by yourself or you know, he needed time by himself as well. Away from all the craziness of my sickness and my moods, and me not being able to get out of bed, or not being able to go to an event and things like that. So you’ve got to be able to be honest, you’ve gotta be able to have that support. It’s really important. 

[00:19:39] Maryanne: And giving each other permission to have that away time, together time. It’s a balance, isn’t it, Sharyn? 

[00:19:46] Sharyn: It is. And you can’t help insecurities creep in. 

[00:19:50] Maryanne: That’s right, yes. 

[00:19:51] Sharyn: You know? They really do. Especially because you are unwell. So, you know, is he going to be happier with someone else, or, you know, you just, that’s just natural. 

[00:19:59] Maryanne: And the impact of drugs too, those steroids, they often play havoc with your emotions, 

[00:20:04] Sharyn: They really do. 

[00:20:05] Maryanne: He must be a very special man. 

[00:20:07] Sharyn: I cannot express just how special. Everybody who has met him and who has seen the journey along the way and hasn’t even met him yet. But have seen photos on Facebook or experiences we’ve been through. Just his smile is the warmest thing you’ve ever seen, without even knowing him. 

[00:20:23] Maryanne: What a beautiful thing to say. And your kids, they’ve got a good relationship with him as well. 

[00:20:27] Sharyn: They love him.  

[00:20:28] Maryanne: How nice. 

[00:20:28] Sharyn: They just adore him. And he’s been there since they were late teens, and Danny was 20, but he stepped straight in. He’s been there for weddings, picking up, taking places, travelling, everything. You name it, he’s been there, so. 

[00:20:41] Maryanne: So when you look at an individual, Sharyn, you’ve got your physical you, you obviously surrendered and placed your trust in the treating team that you chose. And then you’ve got your emotional you. And then your spiritual you and your social you. There’s so many different components of all of us. You’ve got your relationships, which you place value in. Is there one particular area in your life that you think was quite pivotal that you think knowing and having met a lot of people on the way. Is there one specific choice, what choices that you made or challenges that you faced that you would like to spend teasing out, exploring, expressing how you got through those times? 

[00:21:23] Sharyn: I think the emotional side of me. Because when I got diagnosed, I was in a terrible relationship. 

[00:21:30] Maryanne: Yeah. 

[00:21:31] Sharyn: And that was, I had to break it apart. Because it was, yeah, it just was not good. And I had to concentrate on me getting well. And that’s what was important. I also had a family that my mum and sister didn’t understand my illness. 

[00:21:46] Maryanne: Right. 

[00:21:47] Sharyn: And didn’t want to know because I had always been the fixer in the family. 

[00:21:50] Maryanne: Okay. 

[00:21:51] Sharyn: So now that I needed help and needed, support, they stepped away. So emotionally, it was extremely tough that at that time that happened. But I am quite a strong person. But the emotional side of it, I have struggled with because, as you said, the drugs also present challenges in that regard. So I did go to a counsellor, I think that’s really important. I think you need to speak to someone who is impartial. 

[00:22:15] Maryanne: Who can give you strategies to help you manage. 

[00:22:17] Sharyn: Yeah, because you don’t recognise yourself sometimes. 

[00:21:20] Maryanne: Yeah. 

[00:22:21] Sharyn: And it’s quite challenging. And that can be quite upsetting that you think, not that you’re being weak or anything, but you just don’t recognise what’s going on in your mind. And I think it’s really important that I addressed that straight away. It took a good 12 months to keep getting my head around it and making sure I was staying positive and not falling down in that regard. But again, my partner Troy, was amazingly supportive in that regard as well. I’m sure it was as frustrating as hell for him at times. But he, like I said, he never wavered. He was there all the time. He would give me space, he would let me cry. He would, you know, whatever. And I think that was really important. He also came to counselling with me. Which I also think is really important, because your partner’s going through it as well. They might not be unwell, and they might not express everything to you because they don’t wanna put it on you, but they need an outlet as well. Because it’s very hard for them as well.  

So I think the emotional one is the important one. Physical, we all put on weight and lose weight all over the years and whatever from other things. Menopause, whatever it might be.  

[00:23:20] Maryanne: Yep. 

[00:23:21] Sharyn: Growing old, but the emotional one is the one that we really need to take care of because if we don’t, that can help you get in a hole and stay there. 

[00:23:30] Maryanne: Yeah. 

[00:23:31] Sharyn: And you’ve got to prevent that. 

[00:23:32] Maryanne: I remember you using the word mindset. And it is true. It is, isn’t it Sharyn? 

[00:23:38] Sharyn: Mm-hmm. 

[00:23:39] Maryanne: Yeah. Very much 

[00:23:40] Sharyn: Yeah. And just on that before you go, I just, in the last, I’m sure we’ll touch on this, but in the last probably 18 months, two years, I’ve actually mentored a couple of people going through transplant with that mindset issue. So I’ve been back to the old 7D on Fiona Stanley Ward and spent some time with people because they were really struggling. And it can really hinder your recovery or your fight against this. 

[00:24:06] Maryanne: Oh, absolutely. So, isn’t it a compliment to you, Sharyn, that the staff there have recognised that strength in you. And they’ve invited you back or you’ve volunteered to go back?  

[00:24:18] Sharyn: Both, both. 

[00:24:19] Maryanne: Yeah to just make a difference. To hold the hand of someone who may be struggling.  

[00:24:23] Sharyn: Yeah. 

[00:24:24] Maryanne: I think that’s actually a really lovely thing to do. And when you go in to meet someone who is struggling, how do you approach those situations? 

[00:24:31] Sharyn: My very first thing. I’ll give an example. I had a lady who had the same CML. She’d had it for about five years, and again, she also struggled with her mutations and went to transplant. She called me about 11 o’clock one night from the ward in an absolute mess, and hated everything. Hated the nasal gastric tube. Hated the nurses, hated this, wanted to get out, like just everything. And I just stopped her and I said, “Tell me some positives about today,” and she was allowed to go into the garden. She was allowed two visitors a day and she was allowed to do something else. And I said what I want you to think about is when I went through transplant, I was in hospital for eight weeks. I was in an airlock room. It was the end of COVID. I couldn’t have a visitor. I couldn’t see my children. I couldn’t see the outside world. I couldn’t go to the garden. I couldn’t do anything. And I just want you to look at every little positive of your day. Write it down if you have to, but just remember there’s someone worse off. You are getting to do these little things that help brighten your day and just focus on those. Don’t think about the negatives. Write the negatives down if you want to. Then counter it with all the positives in your day. And that’s what she did. And I went in to visit her the next day and she was crying and she just hugged me and said, “Thank you so much. I don’t know why I didn’t think of that.” But you’re not in a mindset to think of that sometimes. 

[00:25:53] Maryanne: Being gentle with yourself, isn’t it? 

[00:25:55] Sharyn: It really is.  

[00:25:56] Maryanne: Yeah. 

[00:25:57] Sharyn: That’s the perfect thing to say. You have to be gentle with yourself. We put so much pressure on ourself in a normal situation, let alone when we’re unwell. 

[00:26:04] Maryanne: So, COVID, you had a transplant. 

[00:26:07] Sharyn: So it was the very end of COVID. It was June, actually, I’m coming up three years post-transplant. So June 21st 2022. And I went in the first week of June. 

[00:26:18] Maryanne: Who was your donor, Sharyn? 

[00:26:20] Sharyn: It’s unrelated. 

[00:26:21] Maryanne: Okay. 

[00:26:22] Sharyn: Anonymous donor. All I was told, they’re not supposed to tell you apparently where it’s from. But my doctor, I’ve known him for years, said it was a male and it was from Germany. That’s all I know. I’d been on the registry for five years.  

[00:26:34] Maryanne: Okay. 

[00:26:35] Sharyn: They came to me in November and said, “We still can’t find you a match.” November 21 and April 22, they called me up and said, “We’ve just found an unrelated match in Germany.” 

[00:26:43] Maryanne: Wow. 

[00:26:44] Sharyn: “And it will be here in May, and you’ll go in in June.” And from that day they said to say goodbye to your family. They couldn’t even come into the cancer centre, let alone inside the hospital. They had to say goodbye to me there, and I went in for almost eight weeks. It was supposed to be six, and I ended up almost eight. 

[00:26:59] Maryanne: That’s a lifetime for some people. 

[00:27:01] Sharyn: It is. 

[00:27:01] Maryanne: So, how did you spend time, over that eight weeks? 

[00:27:05] Sharyn: So I do stupid things. I did a little dance a day just to, while I could before the chemo hit. And I listened to a lot of podcasts. I can’t even recall if that’s what I was going to say to you. I wanted to write them down, but I couldn’t find them. Just about positivity and things I wrote down a lot. I journaled a bit. I just tried to keep myself busy  

[00:27:25] Maryanne: Yep. 

[00:27:26] Sharyn: And I just, I’m pretty good at visualising. Sorry, I’ve just had a little friend come and say hello and wants to pop in. 

[00:27:32] Maryanne: Oh my gosh.  

[00:27:33] Sharyn: This is Prince, he’s actually 15, I was given him when I got diagnosed. 

[00:27:38] Maryanne: Oh, Prince is gorgeous. Oh, there’s nothing quite like a dog. Oh. 

[00:27:43] Sharyn: No, I know. 

[00:27:44] Maryanne: Just for the viewers.  

[00:27:44] Sharyn: He’s my little baby. 

[00:27:45] Maryanne: It was a beautiful little.. Was it a..? 

[00:27:47] Sharyn: He’s a Yorkiepoo. 

[00:27:48] Maryanne: A Yorkiepoo. 

[00:27:48] Sharyn: So he’s 3.7 kilos and he’s a Yorkshire Terrier cross toy poodle. 

[00:27:53] Maryanne: Oh. He’s just divine, listeners.  

[00:27:54] Sharyn: He is. 

[00:27:55] Maryanne: There’s a lot to be said about the love of a dog. 

[00:27:58] Sharyn: I think that’s why, tracking back, I think that’s why the kids bought him for me.  

[00:28:02] Maryanne: Yep. 

[00:28:03] Sharyn: Because I had to be home so much in that first three months. And they both, one was at school, one was working.  

[00:28:07] Maryanne: Yep. 

[00:28:08] Sharyn: So they said we wanted you to have company. And he’s been there through every step of the way. 

[00:28:12] Maryanne: Oh, that’s silent. Just silent and stable.  

[00:28:16] Sharyn: Yeah it’s crazy, it’s crazy. 

[00:28:17] Maryanne: Yes. So eight weeks and I love those choice of journaling. I do think that there’s enormous value in that.  

[00:28:24] Sharyn: Yeah I do too. 

[00:28:25] Maryanne: It doesn’t matter if it’s not formed sentences, it can be scrambled words, but it’s a, it’s an outlet, isn’t it? 

[00:28:30] Sharyn: It really is. Really is, and I was pretty blessed. It’s probably my thing, but I covered the room with photos of my family. 

[00:28:38] Maryanne: Okay. 

[00:28:38] Sharyn: My kids had a blanket made with their photos on it.  

[00:28:41] Maryanne: Beautiful. 

[00:28:42] Sharyn: So they were with me every step of the way, and I never felt alone because my nurses and the staff were incredible. And I FaceTimed every day with my family when I was well. 

[00:28:51] Maryanne: You mentioned earlier the word visualisation. Was there one thing that you visualised that you worked toward, or was it many things? 

[00:28:58] Sharyn: No, it was probably one, my partner and I, and he did the same. He was visualising as well, and we were just visualising me well.  

[00:29:06] Maryanne: Yes. 

[00:29:07] Sharyn: And actually doing something without the burden of that illness. We’ve travelled the world, we’ve done everything, but when we’ve done it. I’ve ended up very tired or unwell, or we’ve just pushed through. But we both just thought, at the end of this, we’re gonna be sitting by the beach or river or somewhere and you are gonna be well. And so that’s what we did. 

[00:29:27] Maryanne: And that’s what happened. It’s come to fruition. 

[00:29:29] Sharyn: It has. It has. And we even the day before I went in, we went and sat down by the river near one of our favourite coffee shops and we just sat there and cried. And we didn’t know the outcome. It was gonna be very difficult. We thought we knew what the road ahead… 

[00:29:42] Maryanne: Yes. 

[00:29:42] Sharyn: Had in store for us, but it was 10 times harder than that. 

[00:29:45] Maryanne: So now you’re three years post-transplant. What does life look like for you, Sharyn? 

[00:29:49] Sharyn: Eight months after I, I was a bit of a miracle in the sense that my doctor was blown away at how I recovered. I did struggle in hospital, the steroids and everything. I couldn’t walk. It was very difficult. Being this strong superwoman that I believed I was, I said, “Bring in an exercise bike. I’m gonna ride that every day.” And it didn’t work out like that. I was slowly doing maybe 15-minute slow walks with my little pole and intravenous line around the ward just once I was allowed out of my room. But I was only allowed out when everyone else was locked away. So it was really tough. Like we were only given certain times of the day. Yeah. 

[00:30:28] Maryanne: But it’s small steps. But you made the commitment on a daily basis. 

[00:30:32] Sharyn: So that’s the thing when I do that, I do follow through with that. 

[00:30:35] Maryanne: Yes 

[00:30:36] Sharyn: And that’s what I was really important to me to do that. Even if, when I couldn’t walk because I was so swollen from the steroids, just to get up and move. It was really important because it’s very easy to lie in that bed when you’re unwell and just, you know, surrender to it.  

[00:30:51] Maryanne: Yes 

[00:30:52] Sharyn: And I just didn’t wanna do that. I wanted to try and move and the same happened when I went out. That my doctor was like, you’ll be on immunosuppressants for this long and this for this long and everything. And by eight months I had come off every single drug and I was determined that I was not even gonna take a Panadol anymore. 

[00:31:07] Maryanne: Wow 

[00:31:08] Sharyn: You know? So I started work very slowly. I wanted to go back quickly. It didn’t work out. I tried to go back, did about three weeks of five hours twice a week, and that just crumbled me. Nine, 10 months later, I found this little job where I’d be working five hours a day for one or two days a week. And it was absolutely doing nothing. It was just checking people in. And that’s purely what it was. And from there, I am now the operations manager and head of community and memberships at Alchemy Saunas. And we went from one location to seven. 

[00:31:41] Maryanne: Wow. 

[00:31:42] Sharyn: In just under three years. So I’ve been their first employee from day one, and now I’m running it. So I love it. And I loved being back at work. Prior to that, I hadn’t actually worked for five years because I’d gotten so sick and it was just impossible. So again, though, the Leukaemia Foundation stepped in there. They helped me financially. They helped me emotionally, and they helped with everything. They contacted me even when we were at home. Dr. Pete from Adelaide. 

[00:32:10] Maryanne: Yes 

[00:31:10] Sharyn: Had contacted me after we left the Leukaemia Foundation there. He’s still a great friend to this day.  

[00:32:15] Maryanne: Oh how wonderful. 

[00:31:16] Sharyn: He was the person I called the week before I went to transplant, and I said, “Tell me bluntly, what am I expecting?” And he told me every step of the way, good and bad. So, I’m so grateful for all the connections the Leukaemia Foundation’s given me. 

[00:32:28] Maryanne: How lovely, Sharyn. You know, just to know that you’ve got people in your corner, I think is gold, isn’t it?  

[00:32:34] Sharyn: It means everything. 

[00:32:35] Maryanne: And it helps shape the choices that you make too. Because you know you’ve got someone to reach out to. Just to even explore what that might look like until you’re ready to take the step. 

[00:32:46] Sharyn: Exactly. And they never, like I could call them for anything. The volunteers even, that came in to visit me in the hospital, like they’re just fantastic. And they’d even touch base with Troy to make sure he was going okay. It’s just, it’s so important and it’s not missed. 

[00:33:02] Maryanne: That’s the value, but also of you because relationships are always a two-way street, and it is about timing and people. Is it the right time and is it the right connection that creates the good connection relationship, so to speak. 

[00:33:15] Sharyn: Yeah I believe that, and I believe everything happens for a reason at the right time. 

[00:33:18] Maryanne: It does. Absolutely. So I love the words that you’ve used. You know, just along the way, your mindset. You also have a vision, a positive mindset, and you create a vision and they’ve become your current reality. 

[00:33:33] Sharyn: It has, and that got me through. Every now and then you might falter. We all do, even in normal life, not just fighting an illness. But if you have that and you just keep referring back to that and do whatever you can to do that. Listen to someone’s positive podcast or… 

[00:33:47] Maryanne: Yes. 

[00:33:48] Sharyn: Read some positive affirmation cards. Anything like that, just write it on the mirror. Have a little note, post-it note on the mirror, and just repeat that every morning. It changes everything. 

[00:33:58] Maryanne: It does. They’re the simple things. The little things, but they mean at the end of the day so much. 

[00:34:02] Sharyn: They really do. 

[00:34:04] Maryanne: So Sharyn, looking at I know you probably don’t feel like it, but we’ve been, talking for nearly 40 minutes. If you had to summarise some key messages, having been someone who’s experienced isolation. Where you’ve cocooned yourself in isolation during transplant, you’ve made choices that have placed you where you are today, and someone was listening, what would be the key messages that you would like them to hear? 

[00:34:28] Sharyn: Three important things. Keep positive and do whatever you can to do that. That’s number one. Remember, there’s always someone worse off. So you can get through anything, even though at that point you think you can’t. Believe me, you can get through anything. The second one, which is super important and very tough to do, is do not hesitate to reach out. Reach out to family, friends, support services, the Leukaemia Foundation, whoever it may be. Don’t be afraid to just reach out and be honest with them how you’re feeling, what you need. It might be a week of meals cooked or something from a friend, you know, it’s just, don’t be afraid to reach out. We need the support and we forget that we need it. We think we can do everything on our own, and we really can’t. It’s all about support and community, so don’t be afraid to reach out.  

And the third one would be, listen to your body and just take care of yourself. If you can’t get up that day, don’t commit to something and don’t be afraid to tell someone, “No, I can’t come,” or “No, I can’t do that,” or “No, don’t come around.” Listen to your body, because you’re the only one that knows how you are feeling. Even your closest people around you don’t know what’s going on inside your head or your body. So don’t be afraid to even say no to them. The amount of family functions we’ve had to say no to and be disappointed about, I can’t even tell you. But that’s the thing. Don’t put the pressure on yourself. If you have to say no, say no, and be happy with that decision, because it’s about you. You’ve got to take care of you, and you’ve got to do that for yourself. 

[00:35:58] Maryanne: Well, they’re very, very important. Good messages, Sharyn, and that’s contributed surely to where you are today.  

[00:36:04] Sharyn: It is, it has, and it’s hard to do, but you’ve gotta do it. 

[00:36:07] Maryanne: Yeah. Hard to do, but you made that commitment and you had that vision. So you know that mindset, a vision, and a commitment to little steps that then become an easier step. That’s why you are where you are today. 

[00:36:22] Sharyn: Yeah, and I think give yourself some credit for where you get to, because I don’t do that enough. And every now and then, I sit back and take stock of where I’ve been, what I’ve been through, and where I am. And I couldn’t have done it without the community or without my partner, my kids, everyone who’s chipped in. Or, I’ve had people do, one of my best girlfriends did a triathlon to raise money when we weren’t working and things like that. Just, you know, accept the fact that you’ve probably put some good out into the world to get this good to come back to you. So,  give yourself some credit. 

[00:36:52] Maryanne: I’d like to thank you for sharing everything that you’ve chosen for yourself. And sometimes I always think, you know, when you see someone’s smiling face and you read their aura, I see a lot of peace across the screen and a generosity too, Sharyn, in sharing where you’ve been and choices you’ve made. So, thank you for being a part of Talking Blood Cancer. I think you’ve got some valuable messages there and all the best. 

[00:37:17] Sharyn: Thank you. It’s been a pleasure, and if anyone needs anything, reach out. I’m always happy to support anybody that needs it. 

[00:37:23] Maryanne: How beautiful. Thank you. 

[00:37:26] Sharyn: Thank you.