How the diagnosis of an Osteoblastoma took over my 20’s with Amelia Rees.
Welcome to the ninth episode of The Brain Game Changer Podcast. I am your host, Melissa Gough. In this week’s episode, we speak with Podcast Producer Amelia Rees, who shares the long journey of dealing with a very unexpected diagnosis of Osteoblastoma.
Amelia walks us through growing up as a pastor’s child, receiving news about an Osteoblastoma diagnosis at the young age of 21, two weeks after announcing her engagement. This resulted in numerous surgeries that eventually led to the decision of removing her left collarbone seven years later. She is the only person in Australia to have experienced such a procedure. She bravely addresses her continued journey with mental health and how now, on the other side of her 20's, is starting to make decisions about what she wants to do in her future that brings her purpose and joy.
Throughout the interview, Amelia presents as upbeat and full of zest, however, it is very clear, life was not always experienced this way.
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Melissa Gough 0:08
Hello and welcome to an episode of The Brain Game Changer: where heartfelt stories, awareness, and education can change the game. Each week we delve into the experiences of amazing humans, advocates and organisations from all walks of life, who share their adversities, the triumphs after tragedy, the milestones and those brain game changing moments right here in front of the mic. Through this journey together, we may find that we can learn some valuable tools, knowledge or education that will lead us into becoming game changers for ourselves, or someone around us or even for our community. My name is Melissa, thank you for inviting me into your space, itt is great to be with you.
Melissa Gough 0:53
Welcome to Episode 9, Season One of The Brain Game Changer Podcast. In this week's episode, we speak with Podcast Producer Amelia Rees, who shares the long journey of dealing with a very unexpected diagnosis of an Osteoblastoma. Amelia walks us through growing up as a pastor's child, receiving news about osteoblastoma at the young age of 21, just two weeks after announcing her engagement. This resulted in numerous surgeries that eventually led to the decision of removing her left collarbone seven years later. She is the only person in Australia to have experienced such a procedure. She bravely addresses her continued journey with mental health, and how now on the other side of her 20s is starting to make decisions about what she wants to do in a future that brings her purpose and joy. Now I've got to know Amelia over the last couple of months because she edits these amazing interviews that go out to you. I also know Amelia is very upbeat. She's very social, she loves to chat. Throughout this interview, Emily presents as upbeat and full of zest, however, it is very clear life has not always experienced this way. Let's get into the interview.
Melissa Gough 2:31
Good morning, Amelia, and welcome to the brain game changer podcast. It is great to have you here.
Amelia Rees 2:36
Oh, thank you for having me. I'm so excited to be here.
Melissa Gough 2:40
All I can say when I was reading through your journey is, Wow, the listeners are in for a ride. Yeah, let's just say that. I could resonate. Even though what we've been through is very different. I'm almost gonna get teary in the sense of how I could read it, I can visualise, I was almost sitting there with you holding your hand and sharing the moment with you in some of the moments that you experienced. What I'm gonna say is kudos to you for where you are now.
Amelia Rees 3:11
Oh, thank you. Thank you very much. I'm looking forward to getting into it.
Melissa Gough 3:16
Like I always do with all my interviews, we get a little bit of a backstory, because I really love the fact that we get to know a little bit more about you. So I'm just going to ask you a little bit about where you're from, where you live, a bit about your upbringing, and then we're going to lean into some more heavier stuff.
Amelia Rees 3:35
Some good stuff, some good interesting stuff.
Melissa Gough 3:38
You said it.
Amelia Rees 3:41
Well, I was born in Victoria in Geelong. My dad is a pastor of a church. So we moved around a lot when I was younger. So I was born in Victoria. Then we moved to Perth and lived in Tassie for a while. Then at about age 10, moved up to the Central Coast of New South Wales. Then we moved up to Queensland when I was 16, which was awesome to be really close to family and all of that sort of stuff. And yes, started to settle into life as a Queensland girl.
Melissa Gough 4:09
Well, you definitely have better weather. That's for sure..
Amelia Rees 4:12
Yeah. Oh, yeah.
Melissa Gough 4:13
First of all, thank you for sharing that. One thing that I'm really curious about is because I haven't grown up in this and I know a lot of people who haven't grown up in this. What was it like growing up in a family where your parents or your father is a pastor and you moved around? So what was life like for you? I can imagine a lot of church.
Amelia Rees 4:32
Yes, lots of church.
Melissa Gough 4:34
And, you know, being around a belief system and a community that resonated with you. What was that like?
Amelia Rees 4:42
Yeah, I think there are two sides of it. Obviously, having faith is really a big part of my life, and it's been able to give me a lot of peace throughout the years, being a pastor's kid to or PK's as we call them.
Melissa Gough 4:54
Your own little title!
Amelia Rees 4:56
Oh, yeah!
Amelia Rees 4:57
We usually lived in what's called the manse which is right next door to the church, so you're about 20 metres away all the time. When I say church, to visualise, we're not talking Catholic, we're not talking mega churches or anything that we're talking about your small little local church, 200 to 300 people, so a very close knit community of people. That sense of community was just amazing. Growing up, it was good to learn how to deal with a multitude of people. As a pastor's kid, you see lots of people coming into the home for counselling and all that sort of stuff. I think it would have created a bigger sense of empathy in me because you see people's struggles, a bit more than say, you would if you were in a different environment, it's always been a really positive experience for me.
Melissa Gough 5:41
That's awesome. And, you know, I think as humans, we've got our journey of what is an important faith to us. What's an important belief to us? I think we've got a big rainbow of different beliefs. And it's great that it's presented as a really positive experience for you growing up.
Amelia Rees 5:57
Yeah, definitely.
Melissa Gough 6:07
As we lean into the heavier stuff, the big stuff, the next journey of events that occurred in your life, a young man entered your life by the name of Marshall, let's talk about him.
Amelia Rees 6:19
He sure did. Well, technically, he walked into my life when I was 16. We dated for a year. And then I was like, Oh, blah, blah, blah we're gonna get married! He was 17, and he freaked out and dumped me! Which is fair enough, I understand.
Melissa Gough 6:35
He ran for the hills!
Amelia Rees 6:36
He was like ahhh, seventeen is a bit young! But yeah.
Melissa Gough 6:39
You're already looking for a wedding dress. And he's, like, I'm just working on a part time job and working on getting my licence.
Amelia Rees 6:46
Exactly, exactly a bit full on for him! But it all worked out in the end, because five years later, we got back together. And yeah, got engaged. And then, two weeks after that, we found out that I had a tumour in my collarbone!
Melissa Gough 7:02
You segwayed well into that moment, we're going to get right there. How did it come about learning about the tumour? Were you experiencing different things in your body? Were you experiencing symptoms? How do we get to the point where they're like you've got a tumour?
Amelia Rees 7:19
It happened really quickly, in the sense that I would sort of be living with some shoulder pain for a little bit, but I was working in cafes, quite a physical job. So I just put it down to being a bit sore. Eventually I went and got an x-ray, and within half an hour the GP called me and was like, 'you need to come down to my office, or we need to talk.' Okay, so we get there. He's like, 'look, you've got a tumour of some sort.' We need to get you booked into the Princess Alexandra Hospital, which is where all the Oncologists live. We need to get this checked out because we don't know what it is. So it was a shock. It had never crossed my mind that something like this would happen.
Melissa Gough 7:56
You're only 21 years old. You know, you're at the vibrance of life and outliving it and you know, working in hospitality and enjoying yourself. And then you get told that news of that. You went to the hospital and had a biopsy.
Amelia Rees 8:09
Within I think about a week or so booked in for a biopsy. They just did a little hole puncture into my collarbone, took a little sample and the tumour that they found is called an osteoblastoma which is a rare benign neoplasm for those medical people, and it accounts for only about 1% of all primary bone tumours. So the reason they were already worried about me is because usually when you get a bone tumour, it's secondary, which means it started somewhere else in your body and then it travelled. Then did all the scans, all the PET scans, all the MRIs, all the bits that you go through, did the biopsy. They originally said that it wasn't osteosarcoma, which is the cancerous version of the tumour. After about two weeks, they changed that diagnosis because of the size of the tumour, so an osteoblastoma and an osteosarcoma, which cousins basically look the same in all their cells. But an osteoblastoma is big. So a sarcoma can't get bigger than two centimetres basically is what they say. So because it was big, they went okay, we're pretty sure, and it's nowhere else in your body. We're pretty sure that it's benign. So yeah, and that's when all the conversations of how to deal with it started.
Melissa Gough 9:26
That must have been quite a moment in hearing that news. I'm just going to add thank you for explaining about osteoblastoma. In doing a little bit more research about it, as you say it is a rare benign bone. It tends to affect boys more than girls or men more than women for whatever reason that presents itself. Even though this is rare, the more common areas as you've stated, are usually in bigger bones and the lower region of our body or the spine, the legs. So to have this happen, near your collarbone, your left collarbone. It's rare, and then it's rare again.
Amelia Rees 10:04
Exactly, exactly. They say that, you know, 3% of all bone tumours are benign. So that's a pretty low number in that, and then only 8% of that are an osteoblastoma. Whatever the maths is, I'm no maths genius!
Melissa Gough 10:20
No, I know what you mean. Again, it's already the main word we're hearing is rare, very rare.
Amelia Rees 10:25
That became a problem, I guess, or a solution to be found by all of the teams, because you've got bones, got all your arteries and your nerve columns, which run behind that collarbone. I needed plastic surgeons as well, because they had to shift muscles around. So yes, it's a very unique surgery. I'm the only one in Australia to have had it. Yeah, my tumours are up at the Mayo Clinic up in America, which is one of the top rated hospitals in the US. So, special is the word they use.
Melissa Gough 11:02
Yes, true. Thank you for sharing. So I'm going to break that down with a lot of information there. So we've established that it's an osteoblastoma. We're very aware that it's rare. And again, in a rare position within your body, where you have collaborated with a whole medical team around you. So from that time of the biopsy, they've realised exactly what's happening, what happens next.
Amelia Rees 11:27
So my first surgery was in October 2013. So to explain, everyone has a collarbone, you've got two bones on top of your chest, and you can feel them right in the middle of my collarbone. Then you've got like your bone marrow on the inside. Most of the bones are hollow, there was a mass that they found. So it grew and literally pushed out my bone. There was splitting and cracking within the bone itself, and it grew very quickly. It ended up being in between the size of a golf ball and a tennis ball. So very big. Yes.
Melissa Gough 12:00
Wow big! It must have been very visually obvious as well.
Amelia Rees 12:04
Definitely. It got to the point, because it was so large on my neck when I would turn my head to the left hand side. I couldn't breathe.
Melissa Gough 12:11
Basically, you're knocking into it. Hindering your airway almost.
Amelia Rees 12:15
Exactly. Yeah. So I had my first surgery, they attempted to go into the bone, scoop out all of the tumour, and then they actually went into my hip as well and took bone marrow from that, putting that in the gap in the hopes that it would all grow and heal itself. Unfortunately, that didn't happen. It's reoccurred.
Melissa Gough 12:35
Sorry, I'm just going to ask you when you say it recurred. What happened?
Amelia Rees 12:38
It grew back. It grew back with a vengeance. Yeah.
Melissa Gough 12:41
Is that quite common as well? Is that normal for it to do that?
Amelia Rees 12:45
So there's osteoblastoma, and then there's an aggressive osteoblastoma, which again, is even rarer. Again, lucky me. So cells, you only need to leave one behind, and it's going to just keep going.
Melissa Gough 12:59
And multiply and keep going.
Amelia Rees 13:09
The morning of my best friend's hens day 2016. I was washing my hair in the shower, as you do putting your arms up in the air and I just relaxed my arms and my collarbone just snapped in half. Because there was nothing left.
Melissa Gough 13:23
Oh my gosh!
Amelia Rees 13:25
Yeah! So it just snapped out of the blue
Melissa Gough 13:27
On the left side in that area?
Amelia Rees 13:29
In that exact spot. I'd sort of started to get a bit in there and was like, oh, and I had an appointment, follow up appointment coming up in like three or four weeks after that. So I was like, Oh, I will just wait, I'm not going to call and bother them. You know, that sort of thing. So I probably should have in hindsight.
Melissa Gough 13:45
Yeah, but at the same time, you're going through something that you know, you're not an expert in this. You're living it, and you're receiving a lot of information about it and you're trying to digest and process it, but it's also normal what you experience, like I'm experiencing a bit of pain. Still healing or, maybe I have overexerted myself, you go through all those sort of questions. So what happens in that moment when the collarbone snapped, obviously a quick ride to the hospital.
Amelia Rees 14:10
Yeah, my collarbone broke in the morning. I was like, Nah, I can't miss this event. Push through the day we went on the wild boys afloat at night time and you know, all that sort of fun stuff. It wasn't until the morning after that actually passed out in the hotel room that my friend was like, 'maybe we should get you the ambulance!'
Melissa Gough 14:26
So you still turn up to the hens night! Oh my gosh, Amelia!
Amelia Rees 14:34
I was convinced this thing was not going to take over my life!
Melissa Gough 14:37
Fair enough and fair enough. So you've attended the hens night with a snapped collarbone. You've enjoyed yourself in whatever capacity you did. Then the next morning you passed out and your friends are like let's get her to the hospital!
Amelia Rees 14:50
Yeah, that's it. So then basically I got there and they said look, we have to let the bone heal as much as it can for the next eight weeks or 12 weeks or whatever it was, and then they plan to go in and do surgery again.
Melissa Gough 15:01
So they've wanted you to heal, and then they want to operate again
Amelia Rees 15:05
Which they did! Which, again, was unsuccessful, because the chamber had actually become vascular. So you've got all of your nerve columns and your main arteries in your neck that run right behind your collarbone, they sit right there. So the tumour had actually attached into some of those blood vessels and basically became a vessel itself. This Explains some of the symptoms, whenever my heart rate would go up, I would get extreme pain in there, because there's that pulsing of the blood moving in and out of this tumour and pushing on the bone that's there, and it's very, very painful. I probably dealt with that extreme pain for a lot of the time, I would say, like three or four years solid. I would get what we would call pain attacks, were just out of the blue, I could be sitting there doing nothing, and then I would go into extreme pain, to the point that doctors actually prescribed me the green whistle, you know, the green whistle that they give you in the ambulance?
Melissa Gough 15:59
Yeah, the ambulance whistle.
Amelia Rees 16:01
So they prescribed that to me, so I could handle some of that pain. So pain management was a massive thing. And then when they went to do the surgery, the second time around, when they punched into the bone, I actually bled out like two litres of blood because they hadn't realised that it had become vascular. So they basically just stitched me up and said, ‘we've kept you alive.’ But we're just going to have to keep monitoring this and it was a cycle.
Melissa Gough 16:26
You're thinking you're going in to have more surgery done. And then they come back to you and say, this is what we experienced, when we were operating on you. You lost two litres of blood, we have to zip you up.The good news is you're still with us! That must have been quite overwhelming and almost surreal and an out of body experience to hear.
Amelia Rees 16:48
You know, it's funny, because I remember at that moment, my thoughts were, that means I'm gonna have to have another surgery. And I was potentially on, you know, strong painkillers and all that sort of stuff. But my thought was, yes, this is not over.
Melissa Gough 17:03
You want it to be and rightly so. It had already taken up enough of your primary years of your 20s. You've talked about your journey and managing the pain. I mean, I experienced pain in a brain haemorrhage type away, and I experienced it for months afterwards. But I get the feeling your pain is a different type of level to manage. Can you describe what it was like for you during that time? And how was it impacting you, even just emotionally socially, just everyday living? What was it like for you during that time?
Amelia Rees 17:36
Very tough. It's one of those things. Now when I look back on it, it's a blur. But it definitely trickled into many aspects of my life. One example would be that I didn't have a straight, coherent conversation with my husband, for sometimes six months at a time, if I was on the Endone. All that sort of stuff, I had conversations that I wouldn't remember, you know, those sorts of things. It makes it very difficult to work, it's hard to focus, when you're in that sort of level of pain. You're potentially out in public and get one of those little pain attacks that I will talk about, and then all of a sudden you feel really embarrassed. And you don't want to, you know, draw attention to yourself. It's very hard to sleep. Lots and lots of issues.
Melissa Gough 18:18
Sounds like it was challenging for sure.
Amelia Rees 18:21
Yeah, very true and long term as well. And I think that's, for me, one of the biggest things because this went on, in and out of surgeries for about seven years. All of those brain, you know, neural pathways that are created throughout your brain are there and they're really strong. So it's hard to sort of go back and counteract them as well, which has been a big part of the journey.
Melissa Gough 18:44
You went through this all throughout your 20s. I mean, our brain doesn't fully get to its full adult brain capacity until we're sort of in our mid 20s. And you're dealing with all this at that time.
Melissa Gough 19:03
In 2018, you know that the third surgery is coming. However, I guess part of your process in leading up to that point is you started and created a support group on Facebook in November 2017.
Amelia Rees 19:19
Part of that group was a bit of an outlet for me for two reasons. Because you know, church families and all that sort of stuff are communities of people. So it can be quite overwhelming when all those people are messaging you all the time. So that was part of the reason I did that. So I can keep everyone up to date.
Melissa Gough 19:32
You create the boundaries in that scenario.
Amelia Rees 19:36
Yes, yes, exactly.
Melissa Gough 19:37
Thank you for allowing me to access this group, seeing what's on there. I credit you. You're so brave, it is all out there. You talk about the process. You talk about what the doctors say, you talk about what you're feeling on certain days. You show where the scars are, what it feels like. You're creating awareness about something that as we've clearly identified is really rare. You've probably also got a great support network around you to help support you, in sharing this journey. To make a connection.
When my brain haemorrhage happened last year back in May 2021, we were in the midst of a global pandemic. And I lived in a city that was experiencing major lockdowns and I went through that. So hospital visits for me were really restricted and there was really strict security. That's funny upon reflection, I don't have any photos, I don't have any videos. And I think also because mine happened so quickly. You know, I was heavily sedated and there was so much protocol. I didn't have I'm not using the word luxury, I didn't have the opportunity to do so. But I think it's wonderful that you have because of the name of this podcast, and what we're doing is creating awareness, even in watching videos and reading posts of yours. And even in this conversation today. I know that I'm gonna walk away a lot more aware, and a lot more empathic to these sorts of scenarios. We're going to lean into that preparation for that third, and I'm saying final. It was unfortunate it was happening again, but so amazing that it was the third and final, what is the preparation? Is it different to the previous surgeries and previous occurrences that have occurred along the way?
Amelia Rees 21:37
Yes, preparation wise, it was very different. So originally, I had the oncology department, which were handling all of the surgeries and all that sort of stuff. After that second surgery, when they realised the tumour had become, you know, connected to all the blood vessels, they went, ‘okay, we're going to need a thoracic surgeon.’ Which is the person who looks after your blood vessels and your heart and all that. So basically a heart surgeon. And then they also bought in a plastic surgeon as well to support the aesthetics when you take away your collarbone.
Melissa Gough 22:09
Have they told you that your collarbone was going to be removed at this point?
Amelia Rees 22:13
Oh, yes. And it was the best day ever!
Melissa Gough 22:16
Really, what makes you say that?
Amelia Rees 22:18
Because I wanted it gone!If you leave it there, it regrows, I was like, surely we can just chop it out. It's not that simple, I can imagine. It's not something that they like to do. From what I understand, it hasn't been done in Australia, where they just take a collarbone out, I think it was an eight or nine hour surgery in total. So what they had to do was chop from where my shoulder connects to the collarbone. Then at the other end, they chopped a chunk out of my sternum and removed that as well. That resulted in needing to lift up the whole thing. They said, if we don't do that, that's just going to continue to grow. But they were very hesitant to do that surgery, it took them about six months, I say to psych themselves into it.
Melissa Gough 23:05
Yeah, they look at it through a totally different lens to what we do, we just want results! We just want to get the damn thing over and done with. They know the body better than what we do in different ways. It sounds like you had quite a team. I'm sure in that eight or nine hour period, there were different layers and turnovers/ changeovers and almost passing the baton as people came in and people came out during that. It's phenomenal.
Amelia Rees 23:32
Yeah, exactly. They were very worried because an artery runs behind there, but you also have nerve columns. Because there's a heart surgeon there, so if there are any challenges
it’s like I've only got you'll be right, we'll fix it up. But that nerve column, which is about as wide as your artery from what I understand, it's about one and a half centimetres wide, and that is responsible for all the nerves in the left side of your body. So there was a really big risk that I could come out and have either permanent pins and needles total numbness on one side, they wouldn't know until I came out. Thankfully, that didn't happen. I don't have any numbness or pain or anything like that now, but they were really worried about that section of it because it was a surgery that hadn't been done before. I actually got a copy of photos and all that sort of stuff. So I got to see what your nerve column looks like underneath your collarbone.
Melissa Gough 24:23
That would have been fascinating. I know when you get X rays and pictures of your own body. It's just like, Wow, is this what this is? What I internally look like is fascinating. You've come out of a gruelling eight to nine hour surgery, you show on your FB page, a visual showing what your body looks like at that time. There are two really big aggressive scars, you are dosed up to the eyeballs in managing the pain and also even getting through an eight to nine hour surgery. Surviving that as well. How long were you in the hospital during this time? What was the recovery process like going forward?
Amelia Rees 25:02
I was in the hospital for about 10 or 12 days, I think in total. The first week or so was the hardest, because, like you would know this. Everyone needs to go to the bathroom to pee at some stage during the day. But it's really difficult to do that when you've got 15 cords hanging out. Trying to untangle yourself and trying to make it in time hoping that you will, but you've because you've got all these wires coming out of you. And yeah, I have to laugh about it. That's my sort of approach. I always find it. It's a little bit funny, because it's like….
Melissa Gough 25:36
it is what it is. I know it's funny, you say that. I was 48, and I yeah, I wet the bed a few times. So yeah, if you feel you do you sort of go back into this inner child.
25:45
Amelia Rees
100% Yeah.
It's like I'm wetting the bed and then in my scenario, or part of the process was I had to drink three litres of water a day, three litres, three litres, three litres! So I was on the buzzer every 10 minutes. Need a bedpan? I need this, I need that. And bless the nurses, they're doing the most amazing job and doing the best they can. But by the time they get there, I'd be like, I have wet the bed. Or they give me a pan, I'd get it in the pan, but because there was so much water, it went out of the pan onto the bed. You know, it was like a waterfall. So yeah, yeah, it's humbling those moments that you're in the moment you're thinking gosh, this is just horrific in itself. But later on, you're just….
Amelia Rees 26:26
It's quite funny, those funny moments.
Melissa Gough 26:29
So you're in the hospital for 10 to 12 days. What are the conversations that you're having with the medical team? Upon returning home? What's required? What do you need to do?
Amelia Rees 26:39
Lots and lots of physio! They didn't really want me moving around too much. They just wanted the muscles to heal, before we started stretching them out and trying to move them around, because they have totally relocated in my body. So there was a good chunk of time where I was just sitting around at home, and then it was physio.
Melissa Gough 26:56
How often were you doing physio on a weekly basis?
Amelia Rees 26:59
I think in the beginning, it was once a fortnight. Then at one stage, we jumped back into once a week, and then once a fortnight, once every three weeks, that sort of thing, so it was regular, you know, for them as well. They're not sure how my muscles are going to react to this sort of surgery because I hadn't done it before, which was great, because I got lots of specialised attention.
Melissa Gough 27:23
Yes, obviously needed to get you through the recovery and to the position where you are now. One thing we mentioned earlier, one thing I wanted to lead into, and again, I find this really fascinating is the Mayo Clinic.
Amelia Rees 27:36
From what I understand they sent it over there, first off, to triple check that it wasn't cancer and that there wasn't that risk that it would pop up somewhere else further down the track. I still get follow up appointments once a year just to check all that sort of stuff anyway, but because it is such a rare tumour, you know, I'm like, take it, do the research, we can help someone else, great. I always say I haven't been to America, but part of me has!!
Melissa Gough 27:58
Just a teeny little part of you has been permanently sitting in Minnesota!
Amelia Rees 28:03
That's the one.
Melissa Gough 28:04
The fact that a hospital in Australia was reaching out to them shows the significance of what every medical person who was part of your treatment and part of your journey was dealing with.
Amelia Rees 28:16
I remember the doctor who worked on me. He said, 'oh we had a meeting about you today.' I was like, Yeah, who's we? And he's like, ‘oh, there's about 30 people in the room!’ Some of them are students and stuff like that, because it's so rare. They like to bring in the students and ask me questions. I'm an open book! I'm like, you can ask me whatever you like, mate, go for it.
Melissa Gough 28:37
Well, I'm going to ask you about that. Because it's funny. I had students, whilst also being in the hospital. What I found in my little scenarios, they would give me my meds, it's almost like the saying goes, breakfast like a king, lunch like a prince, dinner like a pauper. They give me my full load in the morning of my drugs.
Amelia Rees 28:56
Yeah, right.
Melissa Gough 28:57
Then obviously, throughout the day, it's almost like maintenance on top of that, that they'd give me. I found probably about 45 minutes later, when the meds had really landed into my body and taken me to interesting and internal places in my psyche, the doctor would come in with about six students all in their long white coats in their clipboards trying to ask me questions. I remember saying to one day, can you pick another time to come in? Because I've got no idea what you're saying?
Amelia Rees 29:27
Yeah.
Melissa Gough 29:28
But I guess in your scenario, because it is so rare, and doctors are so intrigued, they're probably getting all these medical students to see Amelia, go see what she's experiencing. And I guess for them in the start of their medical career, they're experiencing something that they will probably never see again. What was it like in those moments? What sort of questions were they asking you?
Amelia Rees 29:51
Yeah, it was usually the same sort of questions. But occasionally, you'd get those students or even nurses who would take the time to ask, how is this impacting your mental health? How are you going with this? Is there any support we can give you and all that sort of stuff? I don't have any specific stories of students. Nothing that I can share anyway, that doesn't have to do with my body bits hanging out! (laughter).
Melissa Gough 30:15
That's all inappropriate for this podcast! That's for after 9pm radio or something! Okay, I get it. I get it. I'm giving you a wink. I get it. All right. That's awesome. I love it. One thing that I'm hearing throughout this amazing conversation is your humour, and your zest for just being in the moments even through the highs and the lows. I know you are a social, chatty person and having humour and trying to see the light in every scenario is probably also a big thing that helped to get you through.
One person that sounds like they've been a pillar throughout this moment, and it's interesting. Whenever you're talking about him, your face does light up. He's a big part of your world, Marshall. We have talked about how you met him. You've talked about getting married, but where's the timeline? We're gonna go back a bit. Where's the timeline of when all this occurred?
Amelia Rees 31:20
So, Marsh and I got married in January of 2014. We're engaged by August 2013. Two weeks later, we found out that I had the tumour. Two weeks after that, I had a biopsy. Four weeks after that, in the middle of October, I had my first surgery. Then we got married on the 18th of January 2014. So all of my first surgery, diagnosis, everything, was before we got married, and I gave Marshall an out. I said, ‘Look, if you don't want to, if you don't want to deal with this, that's okay.’ I understand.
Melissa Gough 31:57
Well, he obviously said, No, I'm not going anywhere.
Melissa Gough 32:00
He did. He definitely did. It's amazing!
Amelia Rees 32:02
There's this beautiful song by Alicia Keys, which sort of became our song throughout that time. And her main line in that is, I'm going to love you like I'm going to lose you. That became very real and very true. So you go from looking at your future and dreaming about getting married and blah, blah, blah.
Melissa Gough 32:25
To let's see, how much time? How much time are we going to have together?
Amelia Rees 32:29
Exactly, exactly. And it's a big mental shift, big, big mental shift.
Melissa Gough 32:34
He sounds like a very strong man. That's because you've described him as not as social as you, however, you could chat underwater. He's more the sort of introverted quiet person, but he sounds like the silent pillar of strength.
Amelia Rees 32:47
100%! He's my rock for sure. And he's always been really good at bringing me back down to reality, because you can get caught up in your thoughts and go off to all sorts of places, but also be really realistic at the same time. So there wasn't any of that, oh don't worry about it, it's going to be fine. There was more that this is actually really crap. And that's okay for it to be crap. It's okay to cry about it. Be angry about it. That's fine.
Melissa Gough 33:15
Yeah, that's it. You're allowed to be really peeved about it. Yeah, you're allowed to be really angry. That's okay.
Amelia Rees 33:19
Marshall and I have always been really good in that sense. Because we both battle with sort of mental health, me, more so much than him. But there is that mutual understanding to, some days, I would just wake up and be like, I just feel horrible today, and I can't tell you why. I don't know what's going on with my brain. He's like, that's okay. But all I needed to say was, I'm not having a great day, because I didn’tt want to project onto him and that he thinks I'm mad at him for some other reason, or whatever, so the communication was always really strong, between Marsh and I.That made a huge difference, because I could just be real about what I was feeling, and he was like, yeah, that's okay.
Melissa Gough 33:53
I guess even for him, I'm sure he went through his reflective moments, he became the caretaker, but he also probably had to grow up very quickly. You know, we can still have a little bit of ratbag in us in our 20s. As we've stated earlier, the brain doesn't fully become adults until later in the 20s. So he probably had to really internalise and think, I have really got to step up into a way that I never thought imaginable.
Melissa Gough 34:20
Yeah, he really did take on that caretaker role. Which is another thing too, that not many people talk about. There's a lot of sick people in the world, and there's also a lot of people looking after those sick people.
Melissa Gough 34:31
Yes.
Amelia Rees 34:32
And I think it's really important to recognise the importance and the value in those people and to give them support as well, and to be mindful of that in your circle, because it is really hard. It's really hard seeing, you know, there were several times where Marsh would come home and I was pretty much on the floor passed out from pain, so he would have to catch me on occasions, so he could read those signs, he could see when my body wasn't doing so well. He pulled me out of that. It's on all the time you had to make sure I was okay every day, and that's a big responsibility, a lot of pressure.
Melissa Gough 35:04
I mean, that's massive, on top of just the everyday functioning, cooking, cleaning, making sure things are functioning in the everyday world, the necessities. An then he's dealing with the huge possibilities of how your body can respond and how you're going to be throughout your recovery.
Amelia Rees 35:21
Yeah, and then also balancing that with going, Okay, well, we don't know how much time we have together. So let's just enjoy it while we can, whatever that looks like,
Amelia Rees 35:30
Is Marshall part of any support groups that helps him through the journey of your recovery?
Amelia Rees 35:38
There was that big support network of the church, like, there's that many people checking in on us making us meals, all of that sort of stuff. So we were very supportive and very, like you said, very blessed to have that sort of support network around us. You know, that for us, there was a lot of comfort in people praying for us.
Amelia Rees 35:57
The power of prayer.
Amelia Rees 35:59
100% Yeah.
Melissa Gough 35:59
I'm going to ask a question because you describe yourself as an active Christian, and it's a beautiful, positive part of your life. Because I've been asked this, and I mean, I'm not a faith, but I've been asked this question. Did you question your faith? Did you question life when this was happening? Did you question why me? Why is this happening to me?
Melissa Gough 36:19
Ah 100%. I think that's human. But for me, too, there's that whole, the world degrades, bodies degrade, we're using all sorts of chemicals and all that sort of stuff in the world right now, this sort of thing is a lot more common. So there wasn't for me, there wasn't so much of a, why me? Do I deserve this? It was just like, Okay, this is a fact of life, we're just gonna have to deal with it. That's the way I've approached it.
Melissa Gough 36:43
So it's almost like two hats. You did go through some low moments, but at the same time, you sort of had this faith and optimism going through the process.
Amelia Rees 36:51
For me, there was a really big sense of peace going, look, this is out of my control, there's nothing I can do. Doctors have said, there's nothing you can do to help your body basically, except for managing pain. When you go in that cycle for a long time. It's like, okay, well, there's nothing I can do to actually physically improve this. All I can do is give it to God and just go, okay, if I'm going to live, I'm going to live if I'm going to die, I'm going to die. That's just the way it is. I don't know, maybe that's a bit pessimistic.
Melissa Gough 37:16
No, it's how you coped in that moment, and also, you're in survival mode. You're reflecting now. If we'd had this conversation with you, while you're in the midst of it, who knows what the conversation would be like, whereas now you're on, I loosely use the term on the other side, but you're in a position now where you can reflect on that time.
Amelia Rees 37:36
Anyone who goes through any sort of trauma, no matter what it is, is actually making the time to reflect on it. Because when you're in that moment, you can't, you know, there's only so much processing you can do when you're in that survival, fight or flight mode in your brain
Melissa Gough 37:51
True.
Melissa Gough 38:01
You brought up the word mental health, and I'm going to lean into this. Through your teenage years, you experienced a significant event in your life, and that sort of spiralled you into a journey of managing mental health.
Amelia Rees 38:12
Yeah, so I was 15, living in New South Wales, and then I had a big life changing event, I lost a friend of mine, in quite a traumatic way. And that sort of really started, I guess, my mental health journey. So I struggled with that for a few years. Because I had experienced trauma when I was younger, and I didn't seek any help, till I was 19 was the first time I went and saw a psychologist. That was a game changer just to go, oh, okay. It's actually okay to talk things out and verbalise things and say how you're feeling. I realised very quickly that if I bottle things up and don't talk about things, then I can become very depressed, because it just internalises and internalises. That's one thing that I had learned when I was younger, if I don't talk about it, and if I don't open up, I do go into myself. That's when it gets dangerous for me when I get quiet and I'm sad. I've learned to read those signs now that I'm a bit older, and you know, Marshall has learnt them.
Melissa Gough 39:15
It must have challenged your mental health, and you've openly admitted that you are on a support plan and medication to help with your mental health and your everyday functioning. Also being on all these other painkillers, did it impact your mental health as well?
Amelia Rees 39:32
It was the time that I was just stuck at home, by myself. I felt like a sick girl, I felt like it didn't have any value or couldn't contribute to society by working or anything like that.
Or I would have those moments where it's like, okay, all I need to do today is put on one load of washing, and then if I couldn't, I'd be really hard on myself, and that sort of habit started to creep in. I have seen psychologists since I was 19, seen psychologists for that professional help. For one example, I was seeing a psychologist at one stage because I was getting lots of flashbacks, I guess. It wasn't official PTSD, because it's been too long since the trauma, but I was getting flashbacks, and it was scary. So I went to see a psychologist, and she's like, 'look, your brain is still in fight or flight mode.'
So she used this awesome example where she said, if you walk into a room and you see a snake, how are you going to react? I'm like, oh, you'd freak out and run away. She's like, and if there was a fly buzzing around you, what would your reaction be? I was like, Oh, just to swat it away. And she said, Okay, so that's your fight and your flight reaction. Instead of running away, maybe you can say to yourself, it's not a snake, it's just a fly, it's not a snake, it's just a fly. So little mantras like that, where I was like, in a panic because something had grazed along my skin, and I'd bounce back to the past. I go, okay, it's just a fly, it's not a snake. I'm not in danger, you know. So just little tips like that, really helped pull me out of those really hard, dark moments, great visualisation techniques. Just because your brain is telling you that it's a snake doesn't mean that it is. But it takes practice to learn that, it takes practice to recognise the panic, or this feeling that you've got is not necessarily true, or truthful, you know, your brain can do some crazy things to you. But you got to learn how to control that to a certain extent, as well.
Melissa Gough 41:29
Retraining the brain and relearning better patterns to step into a better version of ourselves.
Amelia Rees 41:35
The last, say, two years post op have been a lot of healing and reflecting, which is something that I didn't really expect. In my mind, I was like, okay, once the surgery is done, I'll be fine. I'll be back to normal, whatever that normal is. Not really taking into consideration that I've been through seven years of trauma and to actually deal with that!
Amelia Rees 41:54
Yeah, the enormity it's huge, massive.
Amelia Rees 41:57
Once that physical part was over, it was like, ah, now I need to work on my brain. So that's been the journey for the last couple of years seeing psych's, life coaches, those sorts of people to try to help gain a connection to myself, because when you are stuck with a long term illness, or in my situation, I become very disconnected from my body. There wasn't that self love that people talk about? You know, and I've sort of only now getting on that journey of going, okay, who am I? What do I want that to look like? How can I use that in the future? You know, Marsh, and I have been married for nine years in January. Up until recently, we hadn't really had those future plan conversations, what do we want retirement to look like? Because it wasn't really on the cards, there was a possibility it wasn't on the cards. So why would you talk about that? Because it really hurts to think that. Yeah.
Melissa Gough 42:50
Why would you give yourself hope when the reality is you're having to deal with what the reality is in front of you right at that time?
Amelia Rees 42:57
Exactly. Yeah. And going day by day to that switch of going, okay, there's actually tomorrow. So what does that look like?
Melissa Gough 43:11
This has taken almost a third of your life, what you've gone through, you enjoy work, you enjoy being around people, you love that social interaction. It must have been quite challenging at times when you spent long periods at home, through the recovery, through the journey. Was there a point where you were able to get back to the role that you were doing? Or was there a significant change in your employment and your workability.
Amelia Rees 43:40
So there was definitely a significant change in my workability, especially because I was on such high painkillers. I couldn't be trusted to talk to any other human customer service and all that sort of stuff, like, and it was something that I was anxious about, as well, you know. I didn't want to represent the lawyer that I was working for in a bad light. So I said, Look, I need to step back. I need to be at home and resting. She said, look, I have a podcast that I've started. If you can learn how to edit it, then I can give that work to you. You can at least have something to do throughout the week, which I did, and I just fell in love with it. So rather than going back to work, I actually went oh, I'm gonna try to give podcast production and see where it goes. Because I didn't have anything to lose either. Took on a couple of extra new clients, did a lot of learning. And yeah, so now I am a full time Podcast Producer at Pretty Podcasts. There's the plug.
Melissa Gough 44:31
I love the name. It's a great name.
Amelia Rees 44:33
I love pink and it was girly! The target audience is women.
Amelia Rees 44:37
So there you go, you've ticked all the boxes, that's brilliant. Can you tell us what that involves? So if someone said, what do you do on a weekly basis? Or what's your day to day runnings of Pretty Podcasts? How would you describe it?
Amelia Rees 44:51
So in this example, like yourself, you would send me a raw audio file with just your recording. Basically, I can take that and turn it into a podcast. So that includes editing, shownotes, creating images, whatever sort of people need, and with the real goal to help give people time back, because it is quite time consuming. As you would know, it can be quite technical and stuff like that as well. But it is something that people really love doing, because it's such a great connection point. And it's a great way for clients to know you, and then trust you as well without ever meeting you. So, yeah, I just really fell in love with the platform. And that connection piece of even though I was at home, I could still listen to people talk and sort of connect in that way. So it's been a game changer. For me, it's been great.
Melissa Gough 45:37
It makes sense in what you're saying. Because you're a very social being you get to experience it through a different lens where you don't know the person, but you feel like you're getting connected to someone because you're hearing the stories. That's a role that has integrity and dignity. In my instance, we're sharing stories about really significant events that have occurred in people's lives. So to put that story in the hands of someone, you know, you have to be able to hand that over and have that trust. To know that when it eventually goes from the raw audio to then go out into the world, that it's from a space that's respectable for everyone involved. So that must be something that you really value, and that's important to you.
Amelia Rees 46:22
Yeah, definitely. It's nice because most podcasts are either fortnightly or weekly, I get that regular client interaction as well, which is really nice. You sort of build a rapport and a relationship with people. And yeah, it's really lovely. I love it.
Melissa Gough 46:35
And I guess as we know, podcasts have just taken over the world in the last while, significantly five years.
Melissa Gough 46:40
Oh yeah.
Melissa Gough 46:41
COVID highlighted that even more, because we weren't connecting physically or in our environment, we needed ways to connect, and to feel like we're part of a community in other ways. You've probably come on board at a really good time to do all this.
Amelia Rees 46:58
Yeah, it was totally unintentional, it was just sort of more of a, let's give this a go, I have got nothing to lose...
Melissa Gough 47:04
I can resonate with that. You've gone through your adversity, and I've gone through an adversity. And we're both doing things that we never would have thought would be part of our daily life in a million years. It took something like that to happen to totally segue us into different directions. Now that you're in the role, and now that it's part of your life, you just sort of think I can't imagine it never not being part of my life now.
Amelia Rees 47:29
Yeah. That's the thing when you go through those adversities, it makes you stop and go, okay, what's my purpose in life? What's the reason that I'm doing this and reevaluating things, and unless you've been through some sort of life threatening experience, or you're actually really aware of that mindset? It's not something that you think about, you know, but what am I going to do with my life? I've got a second chance, you know, just like you do.
Melissa Gough 47:52
So true. And you've used the word purpose. I'm going to segue there nicely. It's something that's also come into your life within the last 18 months. It is something that's also fueling your soul and providing a new sense of purpose is that you're a Director of a charity called Raising Dignity. Can you tell us about that?
Amelia Rees 48:13
Yeah. So it's just a baby charity. It's a group of about four of us that are on the official board. So there was a lady that was attending my parents church, Tabi Sango,iis her name? She's an African refugee from Congo. She's been here for about 12 years, but was in like a tent refugee camp, six kids and just a hectic backstory. We've built a really strong relationship with her over the years, she named one of her kids after my mum, that sort of thing. Just lovely.
Melissa Gough 48:43
Oh, wow.
Amelia Rees 48:43
Yeah. So she started it sort of on her own, and then when I found out about it was like, well, maybe we should try to do this legally and properly and all that sort of stuff. That's how my involvement sort of jumped in. It's an area which is prone to significant trauma for the people who live there. And we really wanted to give the women there some dignity back, hence, the Raising Dignity. So the first thing we did just to start out, was to clothe the kids, because there were about 130 kids there, who were being looked after by amazing humans who sort of took them into their own homes. We've set up a little school, give them an education, dress them and all of those sorts of little things. Although they seem tiny, especially the clothing,
Melissa Gough 49:29
No, no, they're amazing milestones in that community, amazing milestones, amazing achievements.
Amelia Rees 49:36
100%. Also it goes to show that that human, that small child or that woman, if they're dressed, well, someone cares about them. They're actually less likely to become victims. Yeah.
Melissa Gough 49:49
And susceptible to experiencing trauma or or various forms of acts that can occur on them.
Melissa Gough 49:56
That's exactly right. Exactly, right. We've recently been able to get one of those old school push pedal sewing machines and the staff members or the teachers have made matching uniforms and taken photos. It's just amazing how that really elevates them. Such small things in our world can really elevate the world and the needs of somebody else. And they're just amazing humans.
Melissa Gough 50:19
I can imagine all of you sitting around and this woman stands up and she's brave, and she shares her story. I can just imagine in that moment, that was probably just you could hear a pin drop with what she's sharing what she's been through.
Amelia Rees 50:31
Unbelievable, like some of the stories that we're talking about. A woman in the bush with five kids and a three month old, hiding from soldiers covering the mouth of her baby to keep him quiet and stuff like that, just stories, you just can't even wrap your mind around.
Melissa Gough 50:46
She also probably feels empowered now as well. You know, after telling her story, she was around a group of people who just thought, well, let's do something. That's awesome. I can imagine it gives you a sense of purpose, and also seeing, this is what I can do now.
Melissa Gough 51:03
Exactly, yeah, and all that future planning. Like, I'd love to go over there one year, spend a bunch of time, do some building or whatever that looks like, it really does give that sense of purpose. It's nice to be able to give back, knowing that those tiny things can make a huge impact on the people over there.
Melissa Gough 51:19
That's it. What's interesting, and what I've observed over the years, and even like, I've travelled a lot, in meeting different people in all walks of life, no matter what country I've been in, it's usually these sort of opportunities where you get to go somewhere, and you get to participate and volunteer and almost like pay forward your services. They're the most enriching that they've talked about.
Amelia Rees 51:41
Oh, definitely.
Melissa Gough 51:42
It almost enriches us more than enriches the people that we're trying to help.
Amelia Rees 51:45
Yeah, I agree.
Melissa Gough 51:55
The name of the podcast is called the Brain Game Changer: where heartfelt stories, awareness and education can change the game. If there's one vital piece of information or one golden nugget that you'd like our listeners to become aware of, what would it be?
Amelia Rees 52:07
You're not alone, any sort of trauma can feel really isolating, but it's only isolating if you let it, and that's something that I've learned. The burden of hurt is less when there's two to carry i,t or three to carry it, or 100 to carry it, you know. So share your heart, say where you're at, the worst thing that's going to happen is that that person is not going to be able to support you, and then there will be a person who will, they will come along. That includes psychologists, doctors, whatever that looks like, just be open. Because you deserve it. You deserve to put yourself first and to not be sad, or in a low place or in pain, whatever that looks like for you just keep pushing back. It's not so much living day by day, it's appreciating the days that you have, because you really don't know when that last time is going to be. So that'd be my first one. I would say that you're not alone. Call that friend. Sometimes when we've got people in our lives who are sick or unwell. We don't really know what to say, and I think that's the key. You don't have to say anything,
Amelia Rees 53:09
You just need to show up. Just show up.
Amelia Rees 53:11
Just be there.
Melissa Gough 53:12
That's so important.
Amelia Rees 53:15
That's really good advice. That sense of not being alone, because people go through their stages where they're confused, and they feel alone. So that's really good advice about just continually reaching out. Continually try and find support groups, continually ask those questions, to try and get the help that you need. It's so important. Amelia, thank you for joining us here today. It is great, and what a remarkable story that you've got. I still smile at the fact that you say that you've there's a little piece of you sitting in Minnesota. (Amelia laughs). That's probably one thing that I always remember about this interview that you know, your body's here. But there's a little piece of us sitting in another part of the world and will always be there.
Amelia Rees 53:56
Yep, that's it.
Melissa Gough 53:58
Thank you for sharing all the layers that you went through, and it is really appreciated. We're so grateful for your time today. Thank you so much.
Amelia Rees 54:06
Well, thank you for having me on. It was an absolute pleasure and an honour to be on the show.
Melissa Gough 54:14
I want to thank you for listening to this episode today and supporting The Brain Game Changer and the guests we interview. I hope it adds some reassurance or valuable tools no matter how big or small, that will continue assisting you in being the wonderful game changer that you are. The best way to support the Brain Game Changer podcast is to like, share with family and friends or subscribe. So each weekly episode is easily available to you. I'd love to hear your feedback. You can also find me on Instagram @thebraingamechanger. Drop in and say hello and check out the regular posts about awareness and education on various important topics and issues.
Until next time, looking forward to sharing the space with you again soon. Take care.
