In this episode of Talking Blood Cancer, host Maryanne Skarparis sits down with Gary Kafoa, a proud Minjungbal man from the Bundjalung nation, to reflect on his experience with acute myeloid leukaemia and his journey of healing and resilience.
Gary shares how his diagnosis at age 44 dramatically changed the course of his life as a professional fisherman. He discusses his early symptoms, the delay in seeking medical attention, and the importance of creating safe spaces for First Nations men to talk about health concerns. He describes the emotional impact of receiving a confronting prognosis and how hope, the support of family, and his cultural beliefs guided him through treatment, including a life-saving stem cell transplant from his brother.
They moved to Gary’s life after treatment, touching on challenges such as depression and finding new purpose. He credits music and connection with community as vital to his recovery, leading him to roles in community service and cultural training. He highlights the importance of holistic healing, connection to country, and tradition in supporting wellness.
Providing insights into the unique experiences of First Nations people facing blood cancer and underlines the value of supportive environments, storytelling, and peer connection throughout treatment and beyond. Gary also shares a song inspired by his journey, capturing the emotional landscape of diagnosis, treatment, and hope.
[00:00:00] Introduction
[00:02:37] Maryanne Skarparis: Hello, my name is Maryanne Skarparis. Welcome to Talking Blood Cancer. Today, with me here in the studio is Garry Henry Kafoa. Hi Garry. Thank you for joining us here for talking Blood Cancer. How are you?
[00:02:50] Garry Kafoa: I’m good. Thank you very much. Bit hot… Weather doesn’t suit me, the hot weather.
[00:02:53] Maryanne Skarparis: No, it is pretty hot in a lot of places around Australia at the moment. I’d like to invite you to share your story, Garry, ’cause yours is a long history story. And so if you could begin by telling us a little bit about yourself, what was happening with you when you were first diagnosed, what you were diagnosed with, and just share with the listeners a little bit about your interesting story.
[00:03:16] Garry Kafoa: Yeah, well, when I was first diagnosed, I was 44, and I was a professional fisherman, and I was born into that. That was my life. My father was, and I grew up with all the old elders, and they taught me all the stories and how to look after the country and not take too much, and they taught me all the good stuff, and never to judge people. So I was lucky I was taught all that stuff. And when I was diagnosed, I had my own fishing crew. There was six of us Aboriginal Torres Strait Islander men, and life was fantastic. We would travel the east coast of Australia, we knew everybody, everyone liked us, we’d sleep on the beaches. Yeah, life was great.
[00:03:54] Maryanne Skarparis: Can I ask Garry, just because I do think it’s very important, being a First Nations person, what mob you belong to…, and area you come from?
[00:04:04] Garry Kafoa: Well, I’m a Minjungbal man.
[00:04:06] Maryanne Skarparis: Mm-hmm.
[00:04:06] Garry Kafoa: So, Minjungbal country is…, Tweed Heads.
[00:04:09] Maryanne Skarparis: Okay.
[00:04:09] Garry Kafoa: So we’re right on the border and we’re on Bundjalung Nation. So the elders didn’t like rural white nations, so they wanted it to change to country. ‘Cause it used to be I’m a Bundjalung…, Minjungbal is my country on Bundjalung Nation. So now it’s Minjungbal…, I’m a Minjungbal man on Bundjalung country, yeah. Bundjalung country takes a lot, it’s a big area. It’s from Grafton River, and it goes up to Ipswich, and back down to the ocean behind the Great Dividing Range. So there’s a lot of different mobs in piece of land. There’s probably 50 different cultural mobs in that land.
[00:04:41] Maryanne Skarparis: Hmm.
[00:04:42] Garry Kafoa: Well, what people need to think is for a long time, if you, if you’re an Aboriginal Torres Strait Islander person, you’re all saying, ‘you’re all in the same basket.’ Every piece of that country, we perceive the world completely different. So, we’re not all the same. I started to get really weak, and the things I could do…, and it happened really quick. There’s things I could do on the day before, I couldn’t really do the next day.
[00:05:05] Maryanne Skarparis: Okay.
[00:05:07] Garry Kafoa: Like I could feel it. I could feel this weakness. And, uh, that went on for about, I don’t know, six, seven weeks and got worse and worse and worse. And then, I was down at Newcastle starting mullet season with my crew and the first lot of fish we caught, I was so sick.
[00:05:20] Maryanne Skarparis: Mmm.
[00:05:21] Garry Kafoa: And.., but I still didn’t know what was going on. I thought I had the fever you get from the mosquitoes.
[00:05:26] Maryanne Skarparis: Yep, Ross River Fever.
[00:05:27] Garry Kafoa: Yeah, because I was always…, I was mud crabbing, and I was prawning in the river, and there was all sorts of things I was doing. So I thought it might’ve been that.
[00:05:35] Maryanne Skarparis: Can we ask why you didn’t go to the doctor?
[00:05:37] Garry Kafoa: No, it’s a real…, a man thing. But I think it’s worse in the First Nation men.
[00:05:42] Maryanne Skarparis: Yes.
[00:05:42] Garry Kafoa: And that’s something I really push hard for. That early intervention. That’s what we need. We need to…, ‘Oh no, she’ll be right.’ No, she won’t be right.
[00:05:50] Maryanne Skarparis: Mmm.
[00:05:50] Garry Kafoa: You know, if you are getting sick and you’re feeling worse every day, then it’s not getting better.
[00:05:55] Maryanne Skarparis: No. So what would’ve made you step in and look for help? What can we be doing to make sure that, you know, men like you who do belong to, you know, First Nations Mobs, what could encourage that early detection, do you think?
[00:06:11] Garry Kafoa: I think, with First Nations people, there has to be a safe environment to even talk about something like that.
[00:06:16] Maryanne Skarparis: Yeah.
[00:06:16] Garry Kafoa: We have these things called Yarn Up days, Yarn Up groups.
[00:06:20] Maryanne Skarparis: Mm-hmm.
[00:06:20] Garry Kafoa: So you have a female Yarn Up group, and a men’s Yarn Up group, and the two never come together. It’s men’s business, and women’s business. And you could there, you know, like, some First Nations man or First Nations woman who’s had treatment and gone through the treatment and come out the other side…,
[00:06:35] Maryanne Skarparis: Yeah.
[00:06:35] Garry Kafoa: Could go there, and be introduced by the facilitator, and you could tell your story and how important it is to get to the doctor and be seen to with the problems that you have. Instead of just putting them off and thinking, ‘no, it’s gonna be fine.’ I often think about if I could have got in there earlier, things might have been a bit different. Instead of the long journey that I did have. You know, I had a very long journey.
[00:06:59] Maryanne Skarparis: Can I ask Garry, what year are we talking?
[00:07:02] Garry Kafoa: 1999, into 2000.
[00:07:06] Maryanne Skarparis: Okay. So you know, quite a significant time ago, 25 years.
[00:07:11] Garry Kafoa: Yep.
[00:07:11] Maryanne Skarparis: Which is a long time ago. Let’s go back to 1999, you know, 2000. You were feeling weak. What got you to go to the doctor? Was it an event or…?
[00:07:23] Garry Kafoa: No. It was, I was down at Newcastle at a place called Swansea.
[00:07:30] Maryanne Skarparis: Mm-hmm.
[00:07:30] Garry Kafoa: And at Blacksmiths Beach. And we were, we were mullet fishermen, so we chased schools of mullet that came outta the river.
[00:07:36] Maryanne Skarparis: Mm-hmm.
[00:07:37] Garry Kafoa: And we had a haul of mullet, and I was in the boat and going around the school of mullet, and I just, I had to pick up some of the net, and it was…, I didn’t think I was gonna be able to do it. And then when I got to the bank, I actually thought I wasn’t gonna make it up to my truck.
[00:07:51] Maryanne Skarparis: Oh.
[00:07:52] Garry Kafoa: So I went up to my truck, and I laid in my truck and I…, my phone just came out, and I had one in the truck. And I rang up and my wife at the time, she wasn’t home, and I just left a message to say goodbye, pretty much.
[00:08:03] Maryanne Skarparis: Oh wow.
[00:08:05] Garry Kafoa: Yeah. I thought, ‘This is it. I don’t think I’m gonna make it.’ I didn’t know what was wrong with me, but I didn’t think I was gonna make it. And, I laid there for about an hour or so, and the men were all running around. They were all taking fish up to the traps and whatever, and they didn’t even know where I was. And then I just…, I got up, and I drove past ’em all and went back to where we were. We had a camp at the scouts hall, and I just got into bed. And the next day, I had a bit of energy back and just headed back for Tweed Heads. When I got back, my wife at the time…, we’re still good friends. We stayed good friends, but we’re not together.
[00:08:36] Maryanne Skarparis: Mm-hmm.
[00:08:37] Garry Kafoa: And she rang up and got me into a doctor. And then the doctor thought that I had, uh, Ross River Fever.
[00:08:42] Maryanne Skarparis: Mm-hmm.
[00:08:42] Garry Kafoa: That’s what I thought. I went and had bloods done, and then that afternoon, the hospital, or he rang me and said, ‘The hospital wants you to go over there straight away.’
[00:08:49] Maryanne Skarparis: Mmm.
[00:08:50] Garry Kafoa: I went over there, and they told me, they said, ‘You got acute myeloid leukaemia.’
[00:08:52] Maryanne Skarparis: Wow.
[00:08:54] Garry Kafoa: I know. There was a young female doctor there.
[00:08:57] Maryanne Skarparis: Mm-hmm.
[00:08:57] Garry Kafoa: And she was very harsh, and she said, ‘This is what you got. Your chances aren’t great. You should probably straighten up all your details in your life.’ And you know, ‘Probably around about three or four months, I would give you.’ And then there was a young male doctor there, and when she walked away, said, ‘Come over here.’ And he sat me down. And he just…, he got his pen out and he, he was drawing, he was doing diagrams as he spoke about leukaemia and what it was, how it worked, everything about it. Then he said, ‘You’ve got a great chance, mate.’ Two different people, you know?
[00:09:27] Maryanne Skarparis: Different perspectives. Wow. In retelling this story, Garry, that would be very surreal for you. Because I can’t imagine what was going through your head having heard one viewpoint and then hearing another one.
[00:09:40] Garry Kafoa: For me personally, it was never gonna take me. It was always another hurdle that I’m just gonna jump over, and we keep moving forward.
[00:09:48] Maryanne Skarparis: Yup.
[00:09:48] Garry Kafoa: And that’s how I faced it every day. It was like, even in my worst times, I’d be like, ‘No, this is…, I’ll get through this.’ And there was always hope. You know, hope’s a big one for me. I deliver a lot of training now, grief and loss and healing trainings.
[00:10:01] Maryanne Skarparis: Oh.
[00:10:01] Garry Kafoa: And that’s the big one that I bring up all the time, is at the end of the day, you’ve always got hope. Always.
[00:10:07] Maryanne Skarparis: Yep, I love that. So what was the anchor for that hope? Was it a visualisation that you planted in your head? What does hope look like for you?
[00:10:17] Garry Kafoa: Well, in my head I was going to get past all this. I had two little children at the time, and that was the hardest part. I was in the old Southport Hospital and the oncology ward was on top floor. And I remember my wife and my children would come and see me, and then I’d stand at the window and watch ’em walk out, get in the car and drive away. That was the hardest part.
[00:10:36] Maryanne Skarparis: Yeah.
[00:10:37] Garry Kafoa: That was the hardest part. But, as far as not thinking in any negative way, I just blocked the negative energy completely out.
[00:10:45] Maryanne Skarparis: Mm-hmm.
[00:10:45] Garry Kafoa: I would just block it out. And every time anything would come in my head, I would tell it to get out. So, ‘No, go on. I don’t want you in here. You’re not welcome in here.’
[00:10:52] Maryanne Skarparis: That’s a strong mindset, isn’t it, Garry? It’s a strong mindset to recognise it, recognise that it’s negative…,
[00:11:00] Garry Kafoa: Yeah.
[00:11:00] Maryanne Skarparis: And then just get rid of it.
[00:11:02] Garry Kafoa: Get rid of it. And then, one of the strangest times was…, I was in the Southport Hospital, and I was very, very sick, as you… and the first lots of chemo. And I got rigors, and they couldn’t grow the, the bug that was in me. They couldn’t figure out what it was to deal with it. So I was very hot and I, I wasn’t going great and they were taking me down to have an ultrasound. And when I…, when they wheeled me out of the room, all my family were there.
[00:11:24] Maryanne Skarparis: Oh.
[00:11:24] Garry Kafoa: Everybody. And I thought, how good’s this? You know, like they’ve all come up the same time. They’ve all come up to say hello to me. And I’m, I’m sick, but I’m not thinking I’m gonna die. And I went down, I had this thing done, I came back out, and then they all started coming in one at a time and talking to me.
[00:11:40] Maryanne Skarparis: Yeah.
[00:11:40] Garry Kafoa: Saying, ‘You can do this, mate. You can do this, you know.’ There’s six of us, and then…, I thought nothing of it. And then, when I had the transplant, it took really easy, it took so well that I had very little graft versus host, you know? I was very lucky, and about three or four years down the track, I’m out fishing with my brother one day, and he said to me…, yeah, ’cause we’re all musicians as well…
[00:12:00] Maryanne Skarparis: Yeah.
[00:12:01] Garry Kafoa: He was a musical director at this big club. Then they said to me, ‘If you ever got really bad, that I could go straight away’, you know? And he said, ‘It’s like the day they said to me, your brother’s on his last, you better get up to the, the hospital’, and I nearly fell off the boat. I was like, ‘What? When did this happen?’ You know? He goes, ‘Yeah’. Then it dawned on me that they were all there that day because the hospital rung them all up and said, ‘You better come up.’
[00:12:24] Maryanne Skarparis: Oh, so how were you all feeling?
[00:12:26] Garry Kafoa: That was horrible when I found that out because I thought I had no intentions passing away.
[00:12:31] Maryanne Skarparis: No.
[00:12:32] Garry Kafoa: You know, like what no one told me. Well, no one told me, but they rang all my family up.
[00:12:37] Maryanne Skarparis: So, Garry, was your brother your donor?
[00:12:40] Garry Kafoa: It’s my eldest brother, yeah.
[00:12:42] Maryanne Skarparis: Yeah.
[00:12:42] Garry Kafoa: And there’s a bit of distance between my eldest brothers and sisters and me. I was a bit of accident that came along…,
[00:12:49] Maryanne Skarparis: Okay.
[00:12:49] Garry Kafoa: Later in life. There’s like 18, 20 years difference.
[00:12:55] Maryanne Skarparis: Wow, that is a long distance.
[00:12:57] Garry Kafoa: Yeah. So he was…, out of all my siblings, he was the one chosen. And my specialist at the time said, ‘You couldn’t be any closer unless you were twins.’ And him and his wife, they really looked into how they could make his marrow stronger, and he ate the right foods and everything like that. His marrow…, they brought a lot of marrow up to the room. There was two ladies came, carried it in, hung it up, and then they put it through. And, I was very, very lucky. I had very little graft versus host, and stayed at the Leukaemia Foundation was fantastic to me and my family, absolutely fantastic. It was Christmas time and they, they just couldn’t do enough. That was really good, yeah.
[00:13:35] Maryanne Skarparis: It is lovely. I feel very privileged to work for our organisation, you know. And of course, those that are connected with us as an organisation know that a lot of the people who are volunteers, who are staff, not all, but have had a connection to someone walking with a blood cancer, so they have a deeper understanding…,
[00:13:55] Garry Kafoa: Yeah.
[00:13:55] Maryanne Skarparis: …, of what’s involved. So 20 years ago, Garry, that’s a long time. And are you able to reflect on what were the choices that you made to keep your head above water? Did you make, you know, my understanding when people have had a transplant, emotionally, there’s a rollercoaster ride.
[00:14:14] Garry Kafoa: Mmm.
[00:14:15] Maryanne Skarparis: What choices did you make to keep your head above water?
[00:14:18] Garry Kafoa: Yeah, that was, that was really tough. I tried to get back fishing, but it just didn’t work for me anymore.
[00:14:24] Maryanne Skarparis: Mm-hmm.
[00:14:25] Garry Kafoa: That’s all I ever did ever since I left school. So, getting to 44, then hitting a brick wall.
[00:14:31] Maryanne Skarparis: Mmm.
[00:14:31] Garry Kafoa: And then having to get over that wall and start a whole new life.
[00:14:35] Maryanne Skarparis: Mmm.
[00:14:35] Garry Kafoa: ‘Cause it was all I’d ever done all my life.
[00:14:38] Maryanne Skarparis: Yep.
[00:14:38] Garry Kafoa: And I thought, ‘What am I gonna do?’ I’ve never done anything else.
[00:14:41] Maryanne Skarparis: Mmm.
[00:14:41] Garry Kafoa: I was on a pension, and I just wanted to work. Everyone kept saying to me, ‘You can’t, you know, you can’t, you can’t do this, you can’t do that. You can’t mow the lawn.’ And I was like, ‘Why can’t I mow?’ You know, I just couldn’t understand all this stuff. And so it took me a fair while, but I had some great friends and I started to get a bit depressed.
[00:14:58] Maryanne Skarparis: Mm-hmm.
[00:14:59] Garry Kafoa: I started to get pretty depressed to be truthful.
[00:15:01] Maryanne Skarparis: Yup.
[00:15:02] Garry Kafoa: I lived in this house with a great big window, and I had a sort of really nice chair, and I used to sit there all day just looking out the window. I had a couple of my friends came around and said, ‘You can’t do this Gaz, you can’t sit like this, mate.’, you know?
[00:15:14] Maryanne Skarparis: Wow.
[00:15:14] Garry Kafoa: And so it was very difficult. But one day, I met this guy that I used to play rugby league with.
[00:15:19] Maryanne Skarparis: Mm-hmm.
[00:15:19] Garry Kafoa: And he was a guitar player, and he told me about this jam night down at Brambles Sports Club. So I went down there, and I was playing congas. And then the leader…, there was a good band too, and the leader of the band said, ‘Can you play drums?’ I said, yes, ‘You wanna have a go at the drums?’ And I played that. And he said, ‘You wanna be the drummer of the band?’ And so from then on, music saved my life.
[00:15:38] Maryanne Skarparis: How lovely.
[00:15:40] Garry Kafoa: It saved my life. Like you just, just going up into the mountains where he had a beautiful house up in the mountains where I’d go up there two or three times a week, rehearse.
[00:15:48] Maryanne Skarparis: Mm-hmm.
[00:15:49] Garry Kafoa: Just being around nature and hearing everything, you know, the birds and everything. And then playing some music and hanging out. And it really saved my life. From then, the music industry sort of opened up, and I joined. I was lucky enough to join some really popular bands and travel around a bit. That really saved my life, yeah, music did.
[00:16:05] Maryanne Skarparis: Music and connection, you know? That opportunity to connect with others who had a similar love of music.
[00:16:13] Garry Kafoa: Mmm.
[00:16:14] Maryanne Skarparis: It’s a beautiful platform that transports you to a…, just a lovely, comfortable space, isn’t it?
[00:16:19] Garry Kafoa: Yeah.
[00:16:20] Maryanne Skarparis: Yeah. So from that engagement, from that connection, from that immersing yourself in something that you love and brought you joy, where has that led you? Over those 20 years, if, you know, you had an opportunity to share with the listeners? Okay, so music and you had that opportunity presented itself to you, but you also jumped in, having felt that experience of sadness and sorrow and a little bit of depression. You might have an understanding that it’s very hard to jump in.
[00:16:53] Garry Kafoa: Well, because when I was in the, um, oncology ward at Southport, a lot of people didn’t make it, you know? And it was…,
[00:17:01] Maryanne Skarparis: Confronting.
[00:17:02] Garry Kafoa: Confronting. ‘Cause you get to know them.
[00:17:03] Maryanne Skarparis: Mmm.
[00:17:04] Garry Kafoa: And talk to them, and then they wouldn’t make it, you know? So that was very, very hard. I made it, and the way I think is that the big Fella up there, he saved me for a reason. That reason will present itself. I gotta be patient, and it will present itself. And so I just try to do…, because I’d been given a second chance, I wanted to pay back. So I, um, used to volunteer for homeless events.
[00:17:25] Maryanne Skarparis: Oh, lovely.
[00:17:27] Garry Kafoa: And in the end I met a lady that…, my wife and I were separated for quite a few years.
[00:17:31] Maryanne Skarparis: Mmm.
[00:17:31] Garry Kafoa: And then I met a lady who was very connected to organisations that, that gave back. So she connected me to these organisations, and then, I just hit the ground running. And all of a sudden, all these things started to happen for me just through positive energy, I.. I reckon it was.
[00:17:49] Maryanne Skarparis: Mm-hmm.
[00:17:49] Garry Kafoa: I ended up working as a, a disability support worker for three years, and then I, I was a drug and alcohol caseworker for about seven years, Aboriginal case worker. And then I just went into…, same company, and I went into delivering cultural training.
[00:18:04] Maryanne Skarparis: Good.
[00:18:06] Garry Kafoa: Holistic healing, trauma-informed care, all that sort of stuff.
[00:18:08] Maryanne Skarparis: Do you still do that to this day, Garry?
[00:18:10] Garry Kafoa: I do, yeah, I still deliver that. I travel around the country for another organisation, the Mary MacKillop Organisation.
[00:18:18] Maryanne Skarparis: Mm-hmm.
[00:18:18] Garry Kafoa: I deliver grief and loss to First Nations people. I might go to Darwin, I might go to Broome, might go to Pilbara. It’s just wherever there’s a need for it.
[00:18:28] Maryanne Skarparis: And they welcome you with, you know, with open arms…,
[00:18:31] Garry Kafoa: Yeah.
[00:18:31] Maryanne Skarparis: And they stop, and they listen.
[00:18:32] Garry Kafoa: Yeah.
[00:18:33] Maryanne Skarparis: And I guess in storytelling, in sharing maybe your experiences with challenges in life…,
[00:18:39] Garry Kafoa: Mmm.
[00:18:39] Maryanne Skarparis: …, that would resonate, I would imagine with those that are in front of you.
[00:18:44] Garry Kafoa: Mm-hmm. That’s the biggest thing…, that when they do a feedback, it’s always like, ‘Uncle Garry’s stories are so good, yeah. Such a good stories.’ I mean, I’ve done so much in my life and I’ve faced so many challenges and, you know, I like to talk about things like that. And when I’m doing the training and it runs into something that I’ve done or something I’ve seen someone else do, and I’ll talk about that inside the training. And people just love that. They love it, they’re all true stories,
[00:19:09] Maryanne Skarparis: I love true stories myself, and hey it’s you know…,
[00:19:11] Garry Kafoa: Mmm.
[00:19:11] Maryanne Skarparis: I’m part of the team with this Talking Blood Cancer. I’m often in touch with people who are newly diagnosed, starting off on treatment, and they look for that comfort…,
[00:19:22] Garry Kafoa: Mmm.
[00:19:23] Maryanne Skarparis: …, of listening to a conversation with someone who maybe have had, or has had a similar experience.
[00:19:30] Garry Kafoa: Yeah.
[00:19:31] Maryanne Skarparis: In saying that, Garry, if your experiences and with what you feel is of great value to those that are starting off in this blood cancer journey…,
[00:19:40] Garry Kafoa: Yeah.
[00:19:40] Maryanne Skarparis: And especially, you know, that wonderful cultural background that you have as a First Nation…,
[00:19:45] Garry Kafoa: Mmm.
[00:19:46] Maryanne Skarparis: What are the.. some key things that you feel that you’d love to impart in this space that would be listened to by many, that key messages for your mob.
[00:19:56] Garry Kafoa: Yeah, you know, for First Nations, like country’s everything for us.
[00:20:02] Maryanne Skarparis: Yeah.
[00:20:02] Garry Kafoa: I mean, just to be able to go and walk on country. And for me personally, I’m a great believer in the Dreaming and the dream time. Even when I was a fisherman, when I was going onto some land, that wasn’t my land, I would always talk to the dreaming to say that, ‘I’m coming on here, I don’t mean no harm, I’m not gonna do anything wrong.’ It is just who I am, that’s just me. Everyone’s different.
[00:20:25] Maryanne Skarparis: Mm-hmm.
[00:20:25] Garry Kafoa: But the Dreamings been a big part of Aboriginal and Torres Strait Islander people forever. It’s who we are as a people. There’s a lot of Aboriginal people that are connected to the churches, so they’re not believing in the Dreaming, you know? And there’s Aboriginal people that believe in the Dreaming and the church.
[00:20:38] Maryanne Skarparis: Mm-hmm.
[00:20:39] Garry Kafoa: So it’s a big thing. And like I said before, every area is different…, the way we perceive the world.
[00:20:44] Maryanne Skarparis: Yeah.
[00:20:44] Garry Kafoa: But for me, it was always about that, I was always gonna make it. I was always gonna make it because there was a need for me to be here. And that was a big thing in my mind, like the ancestors are with me, and they’re not gonna let me go because they want me to be here. And as hard as it got at times that I still never thought I wasn’t gonna be here.
[00:21:04] Maryanne Skarparis: No.
[00:21:04] Garry Kafoa: And it got really tough at times too.
[00:21:06] Maryanne Skarparis: In those tough times, Garry, can I ask, did you have like a meditation or did you have something that was repetitive or something? What did you lean on in those tough times?
[00:21:18] Garry Kafoa: At the end, before, when I got to the point where I could have…, I was ready for the transplant. That was when, back then, I dunno if it’s the same now, but I was in an isolation room for 30 days. ‘Cause they wiped my immune system out.
[00:21:31] Maryanne Skarparis: Mm-hmm.
[00:21:31] Garry Kafoa: And so I had to be in there for 30 days. And that gave me so much time to think about things and to make promises to myself, you know? Like we say a lot of things like, ‘Oh yeah, I’m gonna do this, I’m gonna do that.’ But in that time, I really promised myself, you know, like, ‘I’m gonna make this and the reason I’m gonna make it, is because this reason, and I’m gonna follow it through.’
[00:21:49] Maryanne Skarparis: And did you write it down? Are you a journaller or was it just a commitment?
[00:21:53] Garry Kafoa: It was in my head, and I wanted to help people. When I finally had the transplant, and it was in the Leukaemic Village. I was in the one over there near Southbank. So we, we’d have to keep going up to the hospital and to get checkups. What I saw up there was…, and I’m talking 26 years ago.
[00:22:10] Maryanne Skarparis: Mmm.
[00:22:10] Garry Kafoa: So that’s a long time ago. Well, the oncology, where you went and saw the specialist and that…, it was full of people looking at the floor.
[00:22:17] Maryanne Skarparis: Mmm.
[00:22:18] Garry Kafoa: Their head was down, and they were looking at the floor, and there were people in so much pain and hurt, and everyone was scared. They were so scared. And there used to be a TV up on the thing showing silly TV shows…,
[00:22:29] Maryanne Skarparis: Mmm.
[00:22:29] Garry Kafoa: You know, no one’s interested in. And I just thought to myself, ‘How good would it be?’ ‘Cause one day, this lady bounced in, and she was two years post-transplant, and it’s the first piece of positive thing I’ve ever seen, you know…, the period that I was there. And I just wanted her to stay. I wanted her to keep talking, and she was so happy, and she was talking about it, and I said, ‘Oh, how good’s this?’, you know? And I thought to myself, ‘We need more of this.’
[00:22:51] Maryanne Skarparis: Mm-hmm.
[00:22:51] Garry Kafoa: Even if it was up on the wall like this, a thing comes on, ‘Hi, I’m Garry.’, you know?
[00:22:56] Maryanne Skarparis: Yep, that’s it.
[00:22:57] Garry Kafoa: ‘26 years post-transplant, and I moved forward, and this is what I do now, and life’s been good to me.’
[00:23:02] Maryanne Skarparis: Mmm.
[00:23:02] Garry Kafoa: And you know, and everyone looks at it, and goes, ‘Oh yeah,’, you know?
[00:23:05] Maryanne Skarparis: Mmm.
[00:23:05] Garry Kafoa: ‘This can happen.’
[00:23:06] Maryanne Skarparis: You know, five punchy points, like you’ve suggested, you know?
[00:23:09] Garry Kafoa: Yeah.
[00:23:10] Maryanne Skarparis: Yeah, that would be a great idea. I like that idea.
[00:23:13] Garry Kafoa: It, it just comes on randomly, you know? And then they go, ‘Wow, there is a light at the end of the tunnel.’
[00:23:18] Maryanne Skarparis: Mmm.
[00:23:19] Garry Kafoa: When I was in Southport Hospital, there was a big male nurse there, rugby union player. A real decent bloke too. I was so sick one time, and he came in, he said, ‘You’re not gonna like to hear this, Garry.’ He said, ‘But I need to tell you, there’s a light at the end of the tunnel. You can’t see it now, but it’s there.’
[00:23:35] Maryanne Skarparis: Mmm.
[00:23:36] Garry Kafoa: I always remember that. I always remember it. I actually wrote a song around that, about the light at the end of the tunnel. It is one I wrote about having acute myeloid leukaemia there’s a part in it where I say, ‘The angels are watching over me’, and that this, the nurses were like angels keep coming in and checking me and doing whatever…, and the light at the end of the tunnel.
[00:23:53] Maryanne Skarparis: Do you think you’d like to share that in this podcast? Is that a piece that you would like to forward?
[00:23:58] Garry Kafoa: Yeah, well, I’ve recorded quite a few…, few songs. The reason I’m…, I’m not playing one today on the didge, ’cause it…, I think it wouldn’t sound great, through these little microphones for the didge then.
[00:24:12] Maryanne Skarparis: So, what I look forward to…, because you know, just so the listeners know it. With this conversation, you will be sharing a piece separately…,
[00:24:21] Garry Kafoa: Yeah.
[00:24:21] Maryanne Skarparis: …, that they can listen to. You mentioned in a previous conversation, not in this space, that you’ve created a song that catches your experiences on Didgeridoo. Is that correct?
[00:24:32] Garry Kafoa: Yeah, yeah. All, all my songs, they all have didge…, I play drums.
[00:24:38] Maryanne Skarparis: Lovely.
[00:24:38] Garry Kafoa: I wrote a song about reconciliation, and it got picked up and played around the country for a fair while. That was great.
[00:24:43] Maryanne Skarparis: Yeah.
[00:24:43] Garry Kafoa: I wrote another song about connection. Connection to everything around me and my people, the people, the country, everything. How important connection is. Now my…, I’ve written quite a few. I wrote one… I can probably talk that one through, it’s only short. So it’s like, it’s a song about me first getting diagnosed with leukaemia when I was a fisherman. And then going into hospital and then going to the city to have my transplant. And for me personally, I thought I did something wrong in the Dreaming, I’ve upset the ancestors. That’s what I thought, you know?
[00:25:18] Maryanne Skarparis: Yeah.
[00:25:18] Garry Kafoa: I thought I’ve upset somebody, and then they… this has happened. I’ll just talk it through. It’s like under the moon, under the stars. Out on the water, I didn’t get too far. But in the distance, there’s a shimmering light. They say an old lady keeps it burning all night. And in my room, angels come and go. They’re watching over me. I’m blessed, I know. And I can feel the water, and I can see the light, and it’ll guide me home on this dark night. And in the city, there sits a man. Behind four walls, got his head in his hands. But he can feel the water, and he can see the light and it’ll guide him home on this dark night. Can someone tell me, where did I go wrong? Can someone show me how can I get home? Can someone tell me where did I go wrong? Can someone show me how can I get home? Angels are watching me. Angels are watching me.
[00:26:14] Maryanne Skarparis: I love that, Garry. I love that. That’s just brilliant. Thank you for sharing. You’re such a spiritual person, and I can only hear that your whole experience has guided you, led you, and created such a meaningful pathway that you are now giving back to so many. Thank you.
[00:26:37] Garry Kafoa: There was a friend of mine that was in the village..,
[00:26:40] Maryanne Skarparis: Yes.
[00:26:40] Garry Kafoa: He’s had his transplant, and he’s going well. He’s a musician too, so we’re gonna put our heads together, and maybe come up to the villages at different times and just put a show on. And talk about our experiences and what can be done and how we can keep moving forward. It’s not the end. What it is, is the start of a whole new life, pretty much. That’s what it is.
[00:27:01] Maryanne Skarparis: How special. That’s so true. It’s putting on, you know, a different lens on life and sometimes it holds more meaning.
[00:27:10] Garry Kafoa: Yeah, it does. It’s…, yeah it does. It’s funny because you.. you’re a fisherman…, I was living that life and when you’re a fisherman, you study the seasons, you study the moon, you study the tides, the rain, everything like that. So your whole life is involved in that. When that finished, and I had to step away from that, there was a whole ‘nother world out here that I didn’t even know was, was happening…,
[00:27:30] Maryanne Skarparis: Mmm.
[00:27:30] Garry Kafoa: …, you know? So…, so that was good.
[00:27:32] Maryanne Skarparis: I love that, Garry. I just really love that. Thank you again for sharing with us here in Talking Blood Cancer. Garry, we always ask our interviewees if they are happy to share any golden nuggets for our listeners. You able to share one?
[00:27:47] Garry Kafoa: Yeah. Well, the main thing is, for me, as a First Nations man, is one of the things I talk about is holistic healing. So, to be able to understand that everything around us is alive. We seem to miss it. We’re in a hurry to get here, get there, get everywhere and…, but the trees are alive. The grass grows, it’s alive. All the different animals that are out there on country and the birds, and everything’s alive. And I like to take people onto country in holistic healing, and I like to tell them the stories and just sit there, and close our eyes. And then we practice this thing called Dadirri, this connection to country, connection to earth. And just sit there and listen to everything around us. And you can hear the trees, you can actually hear them. And it gives you that strength, take your shoes off, get that energy through Mother Earth. There’s lots of energy and…, coming through Mother Earth. So we can’t get that with our sand shoes on. So we need to take them off and walk around…, but on country, and just appreciate that everything around us is alive if we look after country, country will look after us.
[00:28:49] Maryanne Skarparis: I love that, Garry, thank you again for sharing that golden nugget, you know? I know that it gives enormous comfort, so thank you.
[00:28:57] Outro
