This episode of Headgame was recorded on Gadigal Lands.
August twenty seventeen. And Jamilla Risve is walking into her GP's office. She thinks she might be pregnant. Being just two years since she and her husband welcome their son, she is a little concerned about managing two children under the age of three. Her GP orders the usual tests, an ultrasound and bloods, With results inconclusive. She's sent to specialists for a closer examination. Instead of finding a baby,
doctors discover a rare tumor in Jimilla's brain. The diagnosis triggers a harrowing treatment plan, two rounds of surgery and thirty six rounds of radiation, the effects of which she still battles to this day. I'm at Middleton and this is Headgame today, Australian author and journalist Jamilla Risve on fighting a one in a million brain tumor. Now, Jamila, you wear many hats, don't you. Yeah?
I do.
Actually, I look really good in hats. That's one of Like, that's one of my that's my I don't have one today, but like it's my humble brag. I'm someone when you get told to put on a hat I look good. Yeah, I think I'm someone who, uh most people when they describe me when I've left jobs and stuff like that, enthusiastic tends to be the word that gets thrown around the most.
I can feel that. I can feel that energy.
Or any But when you're enthusiastic, you try. You tend to want to do all the things right. And I'm someone who has always sort of felt like there's not enough time to do all the things I'd like to do, so try and wear as many hats as i can.
Yes, I've seen and journalists as well. I'm sort of reading through the list and I'm loving it because I completely relate to that. You know, jumping from from hat to hat, you know, people to people, different environments, different locations, surrounding yourself with different people, You're always going to learn and grow and become a better version of who you are.
Take me back though, to your Mama Mia days, Yeah, because that's ultimately where it's sort of not all started, but that's where you know, you sort of were thrust into into the limelight as such, and your messaging and then you know your values behind what Mama Mia encapsulated taught me through that. Yeah.
Sure, So I'd been working in politics, so I'd very much been around media and around that spotlight you talk about, but very much not in it.
I was.
I was behind the scenes helping prime ministers and ministers get their message across. But the worst thing in that job you could possibly do was get caught on camera. Your job was to never be, never be seen.
Oh so that's what you were. You were you were ultimately were you scripting stuff for politicians.
And media advisor and buchw of different things.
I love that.
And then I could see that the government wasn't likely to win, and to be honest, I was really pragmatic. I could see a lot of people with the same skills as me. We're about to be unemployed at the same time, and I was looking ahead and thinking.
Well what would I do?
And Lisa Wilkinson tweeted the job at Mamma Mia and I wouldn't have seen it otherwise. I clicked on it and I applied and I got the job and moved to Sydney and it all happened in about two weeks.
So it was a real whirlwind.
So you went some Ultimately, you went from the political realm into what realm is Mama Mia, because it's quite quite a jump from one jib bowl to another.
And actually I think what Mamma Mia is today is quite different to what it was in twenty twelve. So in twenty twelve, Mia Friedman had turned her blog into a website and she had a company that was running this women's website and publishing every day and they probably had three, maybe three writers I think working there. The whole company was about a dozen people. We were working out of this tiny little office in Lime Street, down
by the wharf in Sydney. We didn't have a meeting room, so we used to have all our meetings out on the balcony because there was a table out there that was a bit bigger.
Good old startups.
It was a proper startup. It was a proper startup. But it really suited me actually because I think to thrive in politics, you've got to be happy with chaos and you've got to be happy with making what you can out of what you've got, and a startup isn't dissimilar in that regard. You've just got to hit the ground running. There's no time to say, oh, I don't want to do that. Job, or I think I'd be
better suited to this. You just like you just start right, you roll your sleeves up, and you do whatever you're asked to do. And I loved working there, and I worked there for almost four years. And during those four years we went from twelve to one hundred and twenty staff, so it was a massive expansion.
Wow, so you're going along and I take it you're working all hours under the sun here right. What was the messaging behind Mama Mia? How did that look on a day to day basis going into work.
Yeah, it was incredibly empowering to work there. I've got to say I had a great time. I loved working with a lot of women because in politics, certainly when I was there, so we didn't work with a lot of women. At the time, it was almost all women, so it kind of gone. It was a real shift from vast majority men who I was working with the politics to vast majority women at Mama Mea. It certainly was back then a website with a really strong feminist message,
and I enjoyed that. I enjoyed putting a gender lens on whatever happened to be going on that day, whether it was celebrity or current affairs or politics or sport, whatever.
It happened to be.
And we didn't have a lot of boundaries because it was new and it was a startup. There weren't many processes in place, not many systems that could be tricky at times. But it also gave us enormous freedom in that if we felt like launching something new or doing something differently, like, we didn't have to ask anyone, We'd just do it.
I find that fascinating. And also, like you said, there's no boundaries to it. You can you can ultimately say and try and get away with what you can right in a pure way. And I found it really interesting that you said went from a sort of male dominant political realm to being, you know, amongst women and free. Did it Do you felt like that give you a sense of freedom, a sense of liberation, and a sense of power.
Yeah, maybe a little bit.
I think.
I think I was confused at the start because I started working in politics at twenty one, and so I hadn't really had another grown up job in my head, and so the first thing you do is what you think is normal, and so working in politics, i'd been there four or five years, and that was how I thought the world worked, I suppose, and that's what I was used to. And I was really used to quite
a masculine environment without recognizing it as that. Yeah, I was used to an environment where people were extremely confident. There was a lot of bravado and you never admitted you were wrong.
And I walked into this.
This all being politics everywhere, all these young women every day, like sorry was the most commonly used word in the office.
It was like, Oh, I'm so sorry, do you mind if I just go to the bathroom? It was like, you don't to be sorry for going to please, please go?
But there was always there was so much apology, and I think it really did start to cement a lot of my views around what makes people feel confident and why it is that women are made to feel not so confident, what it is about society that makes women not feel confident, and a lot of that is about inequality. It does strip your confidence away a lot of the time.
And there are people who don't fall victim to that, absolutely, but for a lot of women, I think the voice in their head has been put there by living in a pretty gendered society, and one of the things I did love about that Mum and me are setting, is I suspect similar to an all girls' school, right, was that it did give women a place to thrive without feeling like they were being pushed out or muscled out because it was an all female environment.
And how important is that is, you know, to give people the opportunity to have an all female environment so they can gain their confidence, be around like minded people, be around you know that home, shall we say, because it is really important because when something goes wrong, you go back to your own people. You know, you go back to your own circle, You go back to your own environment, You go back to somewhere where you feel comfortable and confident.
Yeah, I do think that, you know, at a personal level, I do think there is something extraordinary about being in a room full of women and I get a lot of enjoyment and energy from that. Having said that, I think my preference would be that we had less gender segregated workplaces.
And interestingly, Australia is one of the worst at this.
If you look at sort of other OECD countries and stuff, Australian workplaces are more gender segregated, which means most of us work in a workplace that is dominated by men or dominated by women. We don't have as many industries professions where it's kind of even and sort of if you think about it off the top of your head, it tends to be true in your own life. You know, my kid goes to a school where he hasn't had a male teacher. Yet, there's not many male primary school
teachers other than the principal. Sometimes you don't get as many men who are nurses. You don't get as many men who are hairdressers. In the same way, you don't get as many women who are electricians, or as many women who work in finance. We have quite a gender segregative workforce, and I don't think that's a good thing. I think that betrays a whole lot of inequalities in pay and things like that. But also, the best decisions are made when you've got a group of people around
the table with very different experiences and backgrounds. It avoids group think. It means that you can challenge one another. Usually means you're representative of whoever you're trying to serve or sell to, etc. So I'm kind of I've worked in these gender segregated workplaces but actually I'd like to see on the whole US move to a place where it's more usual to go to work and have a mix of people.
Love that. And so you go from this political career to jumping in into the limelight, I suppose because you went from behind the scenes, people are starting to know your name, starting to recognize you, You start to build a profile in the limelight. How did you manage that and how did that feel when you were subconsciously doing it without really realizing that you were right?
Yeah, look, I think you felt really good. I'm a bit of a show off, and you know, I was a kid who liked being in the school plays and stuff like.
I quite enjoyed it.
And also, in politics, being part of a political party or a government means that your opinion sort of has to fall in step with the government, right, you have to parrot the lines of the government, even if you personally disagree. And so I found there was a lot of freedom in being able to have my own opinion publicly, and so I really, I think reveled in it for
a while. But I did find that as a writer, the more I felt like people knew who I was, the less well I wrote because I found that I started to write scared.
I would be writing interesting, really interesting, and.
I'd be so worried about who might read it and who might hate it, and if I get criticized, and I think, I certainly.
I'm interested to know what it was like for you.
I found an effect of my work for the worse because I was I'd sort of write something really boring because I'd sit down to write an opinion I had, and then I'd almost pull back a little bit here because I didn't want to upset anyone. There, Like a little bit here, and you pull it right back till it was just boring. It was a really vanilla.
There's no substance in it. Yeah, there's nothing in there, right.
And it did take me, I think, a good few years to genuinely be comfortable with the fact that there were always going to be people out there who disagreed with me, and there were always going to.
Be people out there who didn't like me.
And I also think I kind of got there by working with a team and watching younger team members come through and go through the same thing and sort of supporting them. I think it was almost like I had to do the teaching to start believing myself.
Yeah, yeah, of course. And how important is it to stay true to yourself ultimately through writing.
Yeah, enormously important. But I also think what you can't do is give in to the idea that criticism doesn't matter. Because criticism does matter, and you should be open to taking criticism. But a nameless, faceless person on the internet is not the person to take your critique from.
Right.
One of the things that I found really helpful and that I used to try and make all the team members do back in the day was to sit down and assemble a group of people in your head, or cut their pictures out of the newspaper, whatever you wanted to do.
It could be a mix of people.
You knew, tro darts of them, and a mix of people you didn't whose opinion you cared about, you know. For me, it was I remember saying, like, I care about my dad's opinion on my writing. I care about I was very close to my former boss in politics, Kate Elis. I cared about her opinion. I remember think I remember saying, I think I care about Oprah's opinion.
You know, it was a mixture of people I knew and didn't know, And so when I did get criticized, I would, sometimes practically or sometimes just in my head, run what i'd written or what i'd see by those people, and I go, what would they say?
What would they think? And sometimes I call them and find out.
And what I tried to do is narrow it down and say, absolutely, I am up for criticism because I can get it wrong sometimes, I can be off base sometimes, but I'm not just taking it from everyone. I'm going to choose a few people who I care about and who I respect, and I'm going to think about what
they would say. And that sort of kept me honest and made sure I was, I think, more nuanced and careful in what I wrote and what I said publicly, but meant that I didn't give in to the horrible trolls on the internet.
While you're going for all of this, you've got family in the background, right.
Well, sort of just at the start.
Actually, when I was working at MoMA me Or, I met my husband, and yeah, we started a long distance relationship. Originally he was in Melbourne, I was in Sydney, and then yeah, I was working at my meal when I felt pregnant as well, and we had our little boy.
After that, and did your work affect that relationship between you and your husband or did you manage to find a great balance and everything was work as a child as well doing what you're doing. You're definitely double hatting there. It's tough, right, oh for sure.
And you know, I think we had to figure that out together in those early days, and I really thought I'd just be able to go I was so naive. I just thought I'd be able to go back to work and work the way that I used to. I think I was thinking of a baby like an accessory rather than like I just really did not know what
I was getting myself into. And I had kids, like I had my son much earlier than most of my mates, and so I didn't really have a model of how to do things, and so I didn't have a lot of friends who had kids already, and I think as a result, I just sort of was muddling along trying to figure it out. But one of the things that really helped for us, at least was that my husband and I shared care pretty early, so we both went part time when my son was about five months old.
I did the first five months and then from there, we shared it together, and for me, that has been the game changer in allowing both of us to have careers that we love and also have really great relationships with our son. And that's not an easy thing to do because you've both got to want to do that. It's got to be financially possible for you to do that, and I know that's not easy for a lot of people, but I do think in a partnership, if you can find a way early to share the care, it.
Means no one's the expert.
Because I think the danger for mums, especially if they're in a relationship with a man, is that you have the baby and so there's already this like, oh, look, you're the one that did all the things. You grew the baby, so you must know things when actually don't know anything. And then you become the expert in the baby because you're the one at home. And once you're
the expert, you're always the expert. And so you know all things, and you're in charge of all the stuff, and you're the keeper of the knowledge, and you know what snacks at what time, and when bottles have to happen, and you know when's too late for a nap and the more expertise that you hold and nobody else has means that you have to be the one doing all
of the care. And I think what my husband and I, probably by accident rather than design, were able to do was that neither of us was the expert in how to look after our son. And it means that now where I would say we're pretty balanced as parents still, and we've established those that shared care and that equality between us really really early, and it's followed through our son's whole life.
Wow, and what year was your son born in?
He was born in June of twenty fifteen.
And then in twenty seventeen, you feel like you're pregnant again, but you have these same sort of symptoms. You think, oh, we've got another one on the way, and you go to the doctor to confirm. Right, take me back to that moment in twenty seventeen.
Yeah, so I I'd skipped a period and I thought, oh God, I must be pregnant. And my first reaction, and I will admit, was no, it's too soon, ye ready to go?
Not yet? Not yet. I was gonna wait another year, but.
The pregnancy test at home said I wasn't pregnant, and I thought, oh, maybe that's not right. So I went and saw my GP. I wasn't pregnant, and at the time, I was on a book tour, and so we sort of thought, well, I'm probably just really anxious and sort of stressed. My body stressed out doing a lot of travel promoting this book, and I'm a bit nervous about it all. Maybe that's what's going on. Also, you know,
my son was only two. I'd only stopped breastfeeding a year or so earlier, so maybe things were just a bit not back on schedule. Yet. I had a really great GP who took me really seriously, which is important. I think a lot of gps in that situation would have said, you're just a bit stressed, don't worry. She had me do some blood tests which showed I had no estrogen, and I was like, what was that mean?
And she said, look, I don't know, because if you were in menopause or something early, everything else would be different too, like your other hormones would be changing. But it's just your estrogen. So she sent me off to some specialists and that took a bit of time. I think one of the gynecologists was very fancy gynecologist. It took me like eight weeks to get in to see her, and I also got sent to an endocrinologist, and everything sort of happened like they were investigating, but no one
made me feel panicked. It was very much like, oh, I we'll just figure out what's going on with this thing. But as part of that, both of them said, you know, we're going to do all these different tests to figure out what's happening. We do do a brain scan, but don't worry about that. It's just to rule things out.
And the day of the brain scan, I went in and I had an MRI in the morning, and that afternoon I went to lunch with a woman I didn't know very well, and I was trying to be more present, so I left my phone in the car and I had this lunch which I was very distracted anyway, I
think because of the scan. And I got back to the carr and I had a miscall from the GP, the endocrinologist and the gynecologist, so I knew something was up, and I called the gynocologist just because she'd called first, and I called her office and they said, oh, we'd like you to come in to talk about the results of your scan. And I sort of got up my calendar and was like, yeah, okay, when and they said, oh, well, when would you like to come in? And this was the woman I'd waited eight.
Weeks to see.
I was like, ah, now is that up to me? And they said, you know what, why don't you just come in now? That's when you know things are really grim. If the very very busy important people can suddenly see you in fifteen minutes, things are moving fast.
And did you go straight straight there?
I drove straight there.
I called my husband on the way and he said, he just said, I'll meet you there. So he drove and met me at her offices. And I called my sister and just said, you need to distract me so I don't like to drive off the road. And then when we arrived at the gynocologist's office, she saw us very quickly and she told me I had the scanchow that there was a growth in my brain brain tumor, and they thought they knew what it was, but you know,
it was a bit a bit earlier. And she was a gynecologist and this wasn't her area of expertise, and she referred us to a neurosurgeon.
Wow, what's your thought process from the moment you get that phone called say listen, come in now, trying to keep your you know, what's going on your your alarm bells are ringing to sitting down and then ultimately passing you on to someone else. Right, what's going through your head?
It's really hard to describe it.
I didn't take in anything she said after the word she used was lesion. She said, there's a lesion on your brain. And after that I didn't take anything in for a bit because I was like, lesion, isn't lesion a cut?
And then I was like, how did I cut my brain?
And so I asked for clarification and she said, oh, it's like a growth, and my husband said like a tumor. And after that, I don't really remember anything that happened in that appointment. Thank goodness, my husband was there actually listened to some of what was happening. The only thing I can say it was just sheer panic, not panic that I came down from, Like it was like that that that high. I'm someone who's quite scared of heights.
Felt that's the closest I felt to it is having been up somewhere very very very high and being told to jump. I imagine that's how I would have, But I didn't come down like I felt like I was in that heightened state for weeks after that, and it just there was no relief or release. Because I'm someone who is a real problem solver and I like to think about a problem too. I can come to a solution or a plan, and you can't think your way
out of a brain tumor. There's no Once you get to what if I die of because of this brain tumor, there's no there's no solution to that, right, And I sort of could look got trapped in this panic loop.
I think, just talk to me about the rarity of the of the tumor. Yeah, and what your your your ultimatums were, because you know you had basically one one choice and one choice only. Yeah, And when did when did your mind start to accept what was going on?
So I ended up with a neurosurgeon who was outstanding and he was very clear with me, and I think the reason I liked him so much was he didn't sugarcoat, and so I felt like, Okay, he's not lying to me. I had this real fear that people would go, oh, young mum, will just soften the blows of things, which they were not not going to do.
But that was my fear.
And he was so straightforward and black and white about everything I felt.
I felt.
I felt a lot of trust with him, and he said to me that the first time I met him, he said, he told me that the tumor was very unusual. What I have is called a cranio for ingioma, which happens to about everyone in one in a million to
one and a half million people. You're born with it, but you're just born with a couple of extra cells, so you wouldn't be able to see it on a scan until it starts to grow, and for most people it grows when they're a kid, so I was kind of behind, and I'm really lucky that it didn't grow
when i was a kid. But he said to me in that very first appointment, he said, what you have is extremely serious and the next part of this process is going to be incredibly hard, and you're going to have to be incredibly strong, but we are going to get you through this. And I held on to that for years to come. I would go back to myself and say, he said, we're going to get me through this.
And I'm a kid who trusts authority. Oh you know, I worked in politics, think about authority, and I respect authority.
I was like, right, he knows.
So I listened to him and that that definitely helped me. But if I'm honest in terms of that panic head space, I genuinely don't think I came out of it until after the surgery. I think I was close to that state for a couple of months.
And it is so important. It's you know, the old saying, it's not it's not what you say, it's how you say it. Just those few words are so powerful in that moment. And like you said, putting your trust into someone is all that you had, the only option that you had. You go into surgery. What does that look like? What are they what are they doing? Are they cutting part? Are your brain away? And you know? Is it? Is it? Touch and go? How bad is the tumor? How how grown is the tumor?
Yeah, so it was when they found it, it was about two and a half centimeters by one and a half centimeters. My tumor grows in a really densely populated part of the brain. So a lot of the brain is gray matter, right, it doesn't really do anything you don't want to. You still don't want to tumor there either, but you definitely don't want a tumor where it's right in the middle of all the important stuff. And for
me that was the case. So my tumor grows between just underneath the optic chiasm, which is sort of where your eyesight crosses over, like the I'm going to explain this terribly, but like the bit that goes to both of your eyes, where it touches in the middle. It grows right underneath the hypothalamus, which is responsible for hunger, first, metabolism, and a whole bunch of other things.
You couldn't live without your hypothalamus.
And then just above the petuitary gland, which is in charge of all your hormones, which is why my period had stopped and I had no estrogen. The blood supply to my petuitary was being cut off. So that first surgery for me, I've just done a spoiler alert that it was the.
First, which has to be a second.
That first surgery for me, like if I can take myself out of it for a moment. I still am amazed by what doctors can do. So to access my tumor, they went up through my nose. So they went up through my nose with cameras as well as instruments. They cut a small hole in my skull once they got to that point, and they operated on my brain through there, which is a less invasive brain surgery.
Well so rather than cutting your head open, yeah, they went up through your nose.
Yeah, which was still I remember when they said that, I was like what, But I didn't even know that they could do that. But it's quite common now, and if possible, that's how they'll If that's where they can get to the tumor best, that's what they'll do. I think the whole theme of my health journey is naive to like, I just didn't know what I was in for. I was so focused on the possibility that I might
not survive the surgery. I didn't really understand the complexity of recovery and what was going to be ahead of me because I was not experiencing any symptoms except having not had a period. I ran ten K's the day before I went into the hospital. I was still I think, up until the night before, expecting someone to say, oh, no, we mixed up.
A scared yeah, yeah, we've got it wrong. Yeah yeah, yeah.
There was this feeling of like, how could I possibly be sick? I don't feel sick.
And sometimes that's the best way to tackle things sometimes, you know, it's you know, when you overthink, over analyze and overstress, and you know, it can really drain you, you know, psychologically and emotionally and physically.
You know, it reminds me after that, after that surgery, it was would have been only been a couple maybe two days after that surgery. I remember my surgeon came around and I hadn't stood up yet, and he got very grumpy with everyone and was like, why isn't she standing? And I was looking at him being like, oh, because I had brain surgery, and but he was like, no,
I want to standing. I want her up and standing before the end of the day, because it is true that the sooner you're up and standing and moving and walking, the better for your recovery. But at the time, I remember thinking, I don't even know if I can, like yeah, but I remember, but they got everyone on either side of me, and they had my husband on one side my sister on the other and nurses holding all like I had so many cords coming out of me still in front of me, and the sort of helped me
slide off the bed and stand up. And as soon as I did, I started vomiting and it was pitch black like itoked. It looked like tar to me, and I remember just thinking, oh, this is it now, this is I'm dying like this. It was sheer panic because it was black, and my sister, like I remember, she grab clenched my arm and so I looked at her and she said, this is fine. This is completely normal. They knew this was going to happen. You just have
to ride it out. And she was like rubbing my back and she was one hundred percent right, it is completely normal. I swallowed a lot of blood during surgery and it was just dried. It was dried blood coming up, which is gross. Sorry everybody, But she didn't know that. She had no idea.
She just said that she's made it up.
Oh she did.
She was just trying to keep me calm because she also thought it was like and she was like better to die, horb. Yeah, And you know, I do think people sometimes our naivety does protect us, and sometimes that includes not realizing what we're capable of. And my sister would have been one of those people. You know, she's a baby of the family. She's the one we always looked after, and with me not being the one doing the looking after, she really stepped up in the most
incredible way for my whole family. She supported everyone, including me, And I think sometimes we don't know what we can do until we're put in the circumstance where there's no choice anymore.
What does the recovery look like? Because, like you said, all of a sudden, you find yourself on a on a you know, for in for a second operation. How does that journey look up to that second op?
Yeah, the recovery was tough, uh.
Not, not least of which that I had quite a weak nose afterwards because they.
Had to take a lot of cart can imagine kill pulled the tumor from your from your brain through your nose and I don't put it in mid.
Wow, But to do that, they had to take a bit of cartilage out to just make more space I suppose in my nose. And the recovery was going all right, It was hard and I was so tired, and at that stage they just left it with the surgery. So it was a very much wait and see what happens next kind of situation. But my two and a half year old flew a spider Man dole into my nose by accident, and my whole nose just collapsed.
It was like through a spider Man dole.
Yeah, because it was.
And then the spider Man happened, and it happened over a few days. It was like a tent and you just like you pull the poles out of it and it.
Just sort of crum crumble.
My nose just sort of crumpled, and I I remember saying, should I get it fixed?
And my husband was like, yeah.
But not now, Like we're just we've got bigger things to deal with than the nose. We'll deal with that another time. But I think that really did add to my sense of like like it was this another thing, another thing. There was that sort of feeling nonetheless like we had a huge party. One of the things I had wanted was like I'm going to get through this and we're gonna have.
A big party. We had a big party.
In so you still got the all clear, Yes, it's out, it's done.
They were like, we've left a little bit in there because it was too dangerous to take it out. But they weren't expecting it to grow again. They said, good odds, we think it's going to be fine from here. We had this huge party. I remember, it was awesome. My husband I bought a house and this is all in a few months, and we moved into the house on
the Saturday. We unpacked a bit on the Sunday, and then on the Monday they told me it had grown back, and it had grown back really aggressively, so we had to move quite fast.
Oh wow.
In my head, I was it's like when you prune the bushes outside the house and then they grow. But I'm sure that's not how it works.
But that was yeah, yeah, yeah, yeah.
Like it just yeah, it had grown back quite aggressively. I had my first surgery in January. Formal recovery was done by end of March, and they told me that the first weekend of July, so it was it wasn't long. I was back in hospital again in September.
Yeah, where's your head space right now? When they tell you again that it's going back. Not only is it going back, but it's aggressive. We need to get you in a sap. Where's your head space go? Just devastating, devastation.
It wasn't the same shock, of course, because it's not possible, because I had some adjustment, but it was just devastation. And I remember saying, I can't do it again, like I didn't feel strong anymore. I went into that first one being a really fit, healthy, strong.
Thirty, but I hadn't.
I hadn't recovered I recovered that much and in only six months, and I remember just thinking I can't, Like I.
How will I do it? I don't feel strong.
I remember saying I don't feel strong, and I think I meant that in every sense of the word. I didn't feel strong enough. But I was less scared, I will say I was. I was terrified still, but I had less of this certain sense that I would not
be able to survive the surgery. I was, you know, I think I thought, well, I've done it before, so I can do it again, and that that gave me more confidence, which is it probably not very logical, but I did have this sense of like my body got through it, so it must be able to do it again, and that probably didn't take into account how intense that surgery was going to be, and that surgery was life changing, because.
After that surgery, I acquired.
Like quite a significant brain injury, which was necessary like that, they had no choice to cut the tumor out.
They had to. They had to do that.
So they left the part of the tumor that they thought would be okay that was attached a certain part of the brain.
That to preserve the brain if they got wrong.
Then and that it could potentially have devastating effects on you. But now they had to take that risk. They had to cut it all out and just take away the risk of it ever ever being not not being there but ever growing again.
Yeah, So they took probably ninety eight percent of it. They left the two percent that was directly on my optic chiasm because if they'd taken that, I would have been blind. So they chose not to. But they took everything else, which meant I lost progressively took a bit of time, but I lost all hormone function in the pituitary gland, which is really considerable impact on your life. It means I take seven eight types of medication every day. I don't make cortisol anymore, which is the big one,
because you can't you can't be alive without cortisol. My body doesn't balance water on its own, and so without medication, I would just be ferociously thirsty and but wouldn't make your own properly, Like I'd just drink lots of water and then I just it would come out. But I would not My body would do what it needed to do, and so I would eventually just dehydrate entirely and die
from that if I didn't have the medication. I don't make estrogen or testosterone or growth hormone or prolactin, there's so many of them. Progesterone and so just completely changed my life, completely change my life.
Wow, And how has that changed your outlook on life?
I would say, now, you know, five years after that, I am somewhere back near that headspace again. I don't feel indestructible, but I feel like I have the same enthusiasm and enjoyment and determination for life. But I will say it took a really long time to get there, Like I had a good few years of really not being myself.
How did you get through that to be where you are today?
Yeah?
To be honest, I think I had to get to acceptance. You know, they talk about the stages of grief and the stages of grief. I didn't do them in order. I just kept like bobbing around in them all and not getting to acceptance, going backwards and you know, going through the rage period and going through the bargaining period, going through the denial. I just seem to go back and forth. And I think I did that for a
good few years. It didn't help that I came out of treatment into a pandemic and I live in Melbourne, so it'd got locked in my house for a while.
That didn't help. But I and.
I won't say that there were moments of joy in those years. There were, right, like it's never all dark or all light, but I hadn't accepted what had happened to me. I kept putting myself in hospital because I didn't really accept my own limits. I'd keep trying to push and do the things that I live the way I used to live, and do things the way I used to do things, and then it would end up being very dangerous. And I think it did take me a good couple of years to get to the point
of going. You know, I was someone who believed I was living life without limits, that I could do anything, and to accept that there were some really firm limits for me. That didn't mean I couldn't do a whole bunch of other things, but that I did have to
work within those limits or I wouldn't survive. And that sounds really negative, but I actually think it was really helpful for me once I finally reframed and went, Okay, these limits aren't everything, but they are this, and I have to respect that or I'm not respecting what my body can do. Otherwise I'm expecting my body to fly. None of us are sitting here thinking I can fly. My body can't do things anymore. It's never going to be able to do those things. Unless there's some huge
scientific revolution. It's never going to be able to do those things again. So what is possible for me?
Knowing that?
And I think focusing on what is possible for me knowing that has been really helpful.
How did it affect your family and your little one and your husband and how's that relationship today?
Yeah, my husband was just extraordinary.
I think it was my mum who said he was worth marrying just for the first few weeks after I got die.
He knowsed to nothing else. She was like, it was worth it. For those three weeks.
He was so steady, and he figured out really quickly what I needed. And that's not what everyone needs, but what I needed was like a fierce belief I was going to be okay. I needed to be surrounded by that. That's what worked for me. I think for some people that would be quite distressing, but for me, that's what I needed.
And so he did that.
And I'm sure he had moments with other people and away from me where he had an enormous amount of doubt. He must have, but he just did not show that. After that first week. He never cried in front of me. He never showed Whenever I would bring things up, he would be like, no, I'm not worried about that, because you're going to be fine. And he was so certain, and it was I think like it was his belief in me being okay that made me believe it was true.
But I think after a couple of years of that, once I was through the worst of it living in that lockdown in Melbourne, I think that really affected him. You know, he'd sort of been so stoic and not really gotten to fall apart at all, and I think it caught up with him for a bit.
I think now he's doing really.
Well, but I think he had a tough period then it was almost like it was delayed because he couldn't feel the trauma at the time because he had a job to do. Yes, exactly, once I was okay, he could come for par when I was I've written this book with my friend Rosie.
Yeah, broken brains, Yes, we're going to beat.
It, thank you, which is about which is about all of this. But in that book, I talked to a whole lot of experts about the experience of people who are unwell, and one of the questions I was quite scared to ask was around what happens to the children of people who are quite unwell and how does that
affect those kids, because I kind of didn't want to know. Actually, for kids who are careers to their parents, not necessarily primary carers, where it's all on that kid's shoulders, but if they're a secondary care if they're sort of helping with the care but they're not the main one, it
can be extraordinary for them. Most of the outcomes are positive that those kids have greater sense of responsibility, greater capacity for empathy, that they're more likely to understand the importance of putting others first, that they're more helpful, they have a greater sense of self and a sense of purpose. And I remember hearing about this from a psychologist, a child psychologist, when I was writing.
The book, and just thinking, that's my kid. You're just describing my kids.
Who is that he's that he grew up around all of this, and he grew up at two not being the person in the house who was first. You know, his needs were second, because he was constantly being told you gotta be quiet because mum's resting, or you know, got to not fly Spider Man into Mum's head.
That stuff. For a kid to compute that at that age, because it's all about me, me, me, me me, they should be Yeah, of course, of course, and he sort of didn't get to be.
But as a result, he is such a compassionate and kind kid. And you know, I always worry we're going to see the damage that me being sick has done to him, But he's nine going on ten, and I don't see it yet. All I see is that he's just an extraordinary person as a result.
With parents like yourself, absolutely positive that he's going to grow up driven, positive, compassionate and pathetic like you are. So a final question for you, what is next for you?
That's really that's the first time in my life I think that's a really hard question to answer because I really wanted to write this book, and now it's done, and.
I'm going to now I'm going to figure out.
What to do next, your next goal, your next purpose.
Because I've written it with my friend Rosie, who experienced some pretty horrific childhood trauma, and we look at her experience of mental illness and mine of physical illness, and how she has had experience of physical ill health as the result of her mental health, and I've had an experience of mental ill health as a result of what I've gone through. And we've sort of explored this false binary we all come up with where it's like, oh, the mentals over here and the physicals over there, Like
they're both happening in your body. In my case, they're both happening in the brain. These lines we draw around them, these barriers, they might be helpful for diagnosis and things like that, but they're not helpful as a human being. And it's been such a joy sort of having those conversations. And I've found that for a lot of people with mental health challenges, they found my experience quite validating because I tell you, I've been through some of the hardest
physical stuff a human body can go through. And I would have brain surgery ten times over again before I had to go through that period of being mentally unwell before the first surgery. That was the worst thing I've ever done. It was harder than the physical way harder. And I know that's helped a lot of people who felt like their experience wasn't significant or relevant or important. So that's a real joy, I think being allowed to talk about this book finally rather than.
Just write it.
And why can we get the book?
Do you know?
Oh, you should be able to get everywhere everywhere, bad bookstores, like.
I know my books have ended up in some little bookstores and you know, probably probably free now. But Jimiller, thank you so much. Listen, best of luck with everything you do, and send my love to your family.
Of course, thank you, thank you, thank you for your wonderful questions.
Jimiller's book is called Broken Brains and it's out now. You can also follow Jumilla on Instagram. I'll put all the details in the show notes. Thanks for joining me on this episode of Headgame. If you love listening to this podcast, please share it with a friend, or you can leave me a review on your favorite listening app. I'm Att Middleton. Catch you in the next episode.