August 7, 2025 • 47 mins
Today we’re joined by Carly Findlay — she’s an award winning writer, speaker, and an appearance and disability advocate. Carly was born with a rare skin condition called ichthyosis which is a rare genetic condition where the skin over produces dry, scaly, thickened skin and can be incredibly painful. Carly has spent much of her life navigating a world that hasn’t always made room for her differences.
Carly has spoken widely about what it was like growing up, how she came to embrace the term “disabled” later in life, and the pressure to constantly explain or justify your body to other people and she has published two wonderful books titles ‘say hello’ and ‘Growing up disabled in Australia’
We also wanted to speak to Carly about a more recent challenge that she faced with her ovarian cancer diagnosis and what that has meant for her body now after going through early menopause and having a hysterectomy.
We spoke about:
- What is was like growing up and having to face a lot of judgement and comments from strangers
- Why Carly decided to become an advocate for disabled people
- Laura being complacent with her ovarian cyst until Carly reached out and encouraged her to advocate for herself
- The early signs Carly experienced of ovarian cancer
- The confusing diagnosis
- Being faced with having to have either a half or full hysterectomy
- Having the choice of children taken away
- The additional things Carly had to navigate throughout treatment like chemo
- The ridiculous trolling Carly received like saying that she was ‘faking’ a cancer diagnosis
- The really practical ways you can support a loved one through a cancer diagnosis
You can find more from Carly’s website
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
This episode was recorded on cameragle Land. Hi guys, and
welcome back to another episode of Life. I'm cut, I'm Laura,
I'm Brittany, and I am so excited for today's interview.
Now we are joined by Carlie Finlay. She's an award
(00:21):
winning writer, speaker, and an appearance and disability advocate. Carlie
was born with a rare skin condition called ichthyosis.
Speaker 2 (00:29):
Now.
Speaker 1 (00:29):
This is a rare genetic condition where skin overproduces dry, scaly,
thickened skin and can be incredibly painful and in severe cases,
resulting in facial differences. Carli has spoken widely about what
it was like growing up, how she came to embrace
the term disabled later in life, and the pressures to
constantly explain or justify your body to others. She's also
(00:51):
published two wonderful books titled Say Hello and Growing Up
Disabled in Australia. Now, you guys might remember a couple
of months ago, I was talking about my experience of
being diagnosed with a nine centimeter overian cyst and how
it had for a very long time gone undiagnosed, Their
pain that I was experiencing, and also the mishandling through
(01:14):
I guess the system and the waiting times in which
it took to get that diagnosis. Carlie reached out to
me in my DMS. And not only has Carlie been
a fantastic advocate across the space of speaking about disability,
but something that she mentioned to me in those DMS
is that she had recently been diagnosed with ovarian cancer.
Now we all know that there is no pre screening
(01:36):
test for ovarian cancer, it is also something that for
so many women goes hugely undiagnosed until the symptoms are
something that cannot be denied. And it was really I
mean for me when Kylie reached out, I had this
real moment where there was validation to I guess how
much the system is flawed. But also I really wanted
(01:57):
to be able to have this conversation on the pod
and for Carlie to share what she has experienced, because
I mean, we're so grateful to hear that the outcome
now is something that is incredibly positive, but for so
many women who experience over in cancer it can be
a very very different outcome. Carlie, Welcome to the show.
Speaker 2 (02:14):
Hello. That was such a nice introduction, Carlie.
Speaker 3 (02:17):
We kicked out every single episode with accidentally unfiltered your
most embarrassing story.
Speaker 4 (02:22):
So do you have one you can bring to the table.
Speaker 2 (02:25):
I had a recent one. Actually, I work at Melbourne
Fringe Arts Festival and my phone wasn't working, like the
desk's phone wasn't working a few weeks ago, and I
said to my manager, I think I need a new phone.
It's not working, it's not ringing. And the tech person
in our office said, oh, let me have a look
at it for you. And it wasn't plugged in.
Speaker 5 (02:49):
Do you know I actually was so funny.
Speaker 3 (02:52):
Like two weeks ago at my wedding, my sister were
in a hotel and she's got a little baby, Maya,
and she was trying to boil the jug to sterilize
her bottle and it wasn't working. And this was quite
an expensive hotel, and she called them and she goes, look,
this is like ridiculous. It's late at night. I'm trying
to sterilize my baby's bottles. Your appliances aren't working. Can
someone come and fix it?
Speaker 4 (03:10):
Anyway? They come down and have a look and they
just plug it in. Just wasn't even plugged in.
Speaker 1 (03:14):
I think everyone can relate to this. I did the
same on the weekend. I called Appliances online irate because
we'd bought a new TV and it wasn't working. The
setup wasn't working. Turns out you have to charge the remote.
So look, we've all been there.
Speaker 4 (03:25):
Carly, don't worry.
Speaker 2 (03:26):
You're not alone.
Speaker 1 (03:27):
I know that there's so much of the conversation that
we're going to have today is around where you were
at in your health journey with avarian cancer. But I
think for anyone who isn't necessarily familiar with your story,
I would love to know a little bit more about,
like what your childhood was like, and also what the
diagnosis process was like when you were a kid, and
the experience of growing up with a facial difference, especially
(03:49):
at a time when I think there wasn't social media
and kids are bloody cruel, and I guess in that sense,
like I do, think that we've potentially and mean And
I would love your opinion on this. There's been some
changes in the last few years in how kids are
raised and exposure to different things, but of that time,
I think it's just something that was so incredibly othering.
Speaker 2 (04:10):
Yeah, absolutely so. I grew up in a really small
town near Aubrey. The town had about five hundred people,
and my mum and dad are also a mixed race,
so there was that factor. It was a really religious town,
and so when people would, you know, talk about me,
they would say that I have sinned because my parents
are black and white. Oh my god, I know. And
(04:34):
so there was no kind of reasoning around a genetic condition.
It was just like, well, you know, your parents have
done this evil thing and that's why you're like this.
So I was born with ichthyosis, and there was a
little bit known. I was born in the eighties. There
was a little bit known about it at the time,
but not much. So I was diagnosed with it at birth.
But then when I was ten, they did some genetic testing,
(04:57):
so a biopsy, and they found out that I they
have a different type to what I was diagnosed with initially,
although sometimes when I read my file, I think they
state that the name of the first diagnosis, which is
ichthyosa form orthroderma, which the formerythroderma means red skin and
(05:18):
deerma I think is Latin the red skin or Greek something.
Take that bit out. When I was diagnosed with the
erythroderma at the start. I still see that written down
as a trait of my condition. Now, so that must
mean some sort of like physical trait of ichthyosis. But
(05:39):
when I got the Nethertons diagnosis, it didn't change anything.
It just meant that it was like confirmed what I had.
It didn't change the treatment it didn't have, It didn't
change the symptoms. It was just another word for it.
Speaker 1 (05:51):
Something I learned in what I was researching about this
is just the spectrum of what exists with ichthyosis and
how it can be anything from something that's quite mild
to something that's incredibly life threatening for some people. Yeah,
would you be able to give us a bit of
an explanation on what that is for you and where
you sit on that spectrum of severity?
Speaker 2 (06:12):
Yeah? Sure. So I have neverden syndrome, and that is
on the severe end. So for me, obviously, I've got
a facial difference. My skin's really red and scaly, it's
shiny because I use ointment. I use a parafferne ointment
similar to vascialine, and it can result in really bad
infection and pain. So I take painkillers every day to
manage the pain. And it's more socially challenging, I think
(06:35):
than medically challenging, where people stare and comment and say
rude things and intrusive questions.
Speaker 3 (06:42):
And is it something that affects only like your face
or do you get it on other parts of your body?
Speaker 2 (06:48):
My whole body, But my face I think is the
reddest because it's exposed to the elements, But my whole
body is. It's quite passable for not having a skin
condition most of the time, but my body is the sorest.
So my face rarely gets sore, but my body gets
the sorest and the most infection pain.
Speaker 3 (07:08):
When you talk about the fact that it's a rare
genetic condition, how rare are we talking?
Speaker 4 (07:12):
Do you have the stats on them?
Speaker 2 (07:14):
Maybe like one in a million? Wow? Wow, there's not
many people with the condition, But I know a lot
of people with the condition obviously, you know, I know
probably everyone we think theiosis in Australia, i'd say, or
with severe ethiosis. Because we're all in touch with you know,
support groups and online.
Speaker 1 (07:31):
I can imagine what was your schooling like and what
we're I mean, you know, not just in primary school
or high school, but like in those early formative years
when like I said, kids can be mean, but also
they're also not necessarily sure how to approach conversations and
sometimes do it really cruelly. How did you manage that time?
Speaker 2 (07:49):
Yeah, it wasn't great. I didn't like I mean, I
liked school in terms of the academia, but I didn't
love it in terms of the socialization. So kids who
were very exclusionary, you know, there were those kind of
rumors et cetera, where you know, I was told that,
you know, I'd sinned, or lots of people would make
things up as well, you know, like Carlie's got skin cancer,
or Carlie's been burnt or been some burnt. So there
(08:11):
was that. I thought that maybe when it got to
high school it'd be easier, Like I remember my mum saying,
you know, it'd be easier when you get to high school.
But I don't think it was. I think it was
just as hard at primary school as high school. I
spent a lot of time in the library, reading and writing.
Fandom was a really big thing for me, so becoming
a fan of particularly Savage Garden. I know, like lots
(08:31):
of people say that's all I talk about.
Speaker 4 (08:33):
I'm a Savage Garden fan.
Speaker 2 (08:36):
But having that level of like fandom and community when
I was a teenager. I really found myself in that.
When I was about fourteen or fift when I was
probably fifteen, the school librarian said to me that I
should stop looking up Savage Garden on internet.
Speaker 4 (08:53):
And we've looked out urch history, Carli.
Speaker 2 (08:55):
Yeah, yeah, and this is like when the Internet first came,
you know, So that's all I I was using it for.
And then she said, she said that I should look
up ichthiosis, and I did, and I found people with
the condition. And you know, back then, you couldn't easily
upload a photo. You know how long it took in
the nineties to upload of course, so I didn't see
anyone with the condition. So I kind of just assumed
(09:17):
that I looked like this, and they looked like they do.
But I didn't think that we all looked the same.
And so one of the genetic traits about ichthyosis is
that you look more like a person with ichthiosis that
you do your sibling or family member. And so yeah,
so we look very similar, we have very similar traits.
So I was chatting to these people online and then
(09:39):
I could see what was possible. But I don't think
I saw anyone in person or like on TV with
the condition until about nineteen ninety nine when there was
this show on Channel nine called Medical Incredible. And I
remember seeing like people would saying, oh, this show was
on Channel nine on what Thursday or whatever. And I
wrote to Channel nine because in the time that once
(10:01):
a TV showed aired, you could never watch it again,
and so like, I wrote to them and I said,
could you send me the VHS on the show? And
they did, and then I, you know, I saw people
with the condition. And then, as you know, I grew
in confidence. I started writing about my condition more and
finding other people. Yeah, so now I've met lots of people.
Speaker 3 (10:20):
Yeah, how did the I guess your experience in your
younger years and your teenage years with inclusion and exclusion.
Was there a defining moment that shaped your decision to say, Hey,
you know what, I'm not going to let this make
me shy away and become a wallflower, Like I'm going
to be a voice and I want to be on
the TV. And like, what was the moment that made
you think, do you know what, I'm going to absolutely
own this and change some other people's life.
Speaker 2 (10:42):
Yeah, I think it was when like in my twenties,
I started to mentor people with chronic illnesses at the
hospital and I realized that, yes, I have chronic illness.
I have all the same things that they do, even
though it was different diagnosis. So lots of time in hospital,
lots of specialists, lots of time school, social barriers, and
I'm like, yeah, okay, I identified there. And then I
(11:05):
started writing more about my condition, like when we had
MySpace and I was writing a lot about that, and
people related to it, so I wrote, you know, more,
and then I just found it easier to love myself
than to hate myself, and to be myself rather than
to change. And like a lot of the media is
terrible around idiosis. There's really bad headlines like snake skinned
(11:27):
woman and mermaid baby and you know, really dehumanizing stuff,
and so I wanted to change that, and that's why
I started writing more.
Speaker 1 (11:34):
In terms of like when you say really dehumanizing coverage,
as in that's written by journalists that's so hideous but
yet not.
Speaker 2 (11:43):
Surprising, not surprising. And the other thing is I've seen
people have quite content warnings above their faces in articles
as well, but also like it's really exploitative, and I
often say, I don't want to see another article about
ikciosis sun I've written it myself.
Speaker 1 (12:01):
But also like, how deeply offensive to anyone to think
that somebody, the way somebody shows up in the world
because they have a facial difference needs to be a
trigger warning for someone else. I mean, you would see
it all the time. And I think it is such
an incredible privilege of someone who doesn't have a facial
difference because we probably wouldn't have even recognized it necessarily
(12:22):
that that existed in the way that you were exposed
to it every single day, And the things that you
have to highlight and then educate people on, And how
do you deal with the exhaustion side of it, because
I only imagine and we have this conversation not just
about ableism, but anyone who has to do the education
around race or any sort of minority groups. How do
(12:45):
you deal with the unrelenting firstly the questions that are
insensitive and unkind and secondly around the constant education piece.
Speaker 2 (12:55):
Yeah, it's exhausting, and I mean I've definitely you know,
we mentioned earlier that I had very in cancer. I've
definitely taken a step back from advocating after that or
during that time, so I've kind of preserving my energy.
But you know, when I talk to people about their
social media post is really offensive because they've mocked a
(13:16):
person with facial difference, even if it's like mocking themselves.
For example, like if someone has a you know, like
their wisdom teeth out and then their face gets swollen
and they're mocking themselves, and I'm like, hey, I don't
know whether you realize, but this is really offensive. And
often they are really defensive about it. They're like, oh, no,
I wasn't saying this towards a disabled person. I was
saying it about myself. And I'm like, yeah, but even
(13:36):
when it's about yourself, it's still really offensive. And often
people with beauty privilege, you know, they get the jobs,
they get work that I don't get, and they're mocking themselves. Yeah.
Speaker 1 (13:47):
I feel like that the defensiveness comes because like the yeah, yeah, yeah,
it's true. The only other place to go to is
acceptance and then accepting responsibility for doing something that you
know is shameful.
Speaker 2 (13:58):
I guess absolutely.
Speaker 3 (14:00):
I think something interesting and in your book You're released
in twenty nineteen.
Speaker 4 (14:04):
Say Hello.
Speaker 3 (14:05):
You said that the book is called say Hello, because
that's what I want people to do instead of ignoring me,
looking shocked or scared, or making a rude comment about
my face. I would love to get your take on
how you think mothers or fathers with small children should
approach a situation when they see somebody that looks different.
Speaker 4 (14:24):
And I say this because we've spoken about it.
Speaker 3 (14:26):
In the past, like with Ellie Cole Springs to mind
our paralympian friend who has one leg, and you know,
she says kids often point to her and look at
her because she looks so different. And I would love
to know personally from your experience, what guidance would you
give to parents and how to educate their children. Would
you want them to come and talk to you, would
you want them just to explain from afar?
Speaker 2 (14:47):
Yeah, I think it's really important to know that the
disabled person shouldn't have to educate at all times. So
if their child is pointing or asking questions about me,
chances are they're not the first child to do that
in the day fucking sixhausting. I generally don't mind it,
you know, I'll say like I was born like this,
like you were born with your blue eyes. But also
(15:07):
like if they're really rude, sometimes I'll tell them that,
you know, they're being really rude, like a point, you know, yeah,
don't don't point, don't stare. And if they're like I've
had experiences where they'll cry or they'll they'll get scared,
and I'll say to their parents, like you have it's
your responsibility to educate your child. And one of the
things that I think about a lot is the power
(15:28):
of social media. And I'm not saying to sign your
child up to social media. I'm not saying that. But
when you are scrolling through your social media, show your
children diverse people, follow diverse people, show your children. You know,
a lot of my friends with children, they're really prepared
to meet me because they've seen me online.
Speaker 1 (15:45):
I also think, you know, I mean, I have two
little kids, and one of the most transformative for their
perception around just differences in general was watching the Paralympics.
Mark like my oldest, my five year old, she was
just so in awe. And I know that that's not
always the benchmark, because I do think that sometimes when
we talk about disability, we wrap it up in like
but here's an Olympian, but it was something that I
(16:08):
think was incredible for her to see because you know,
she's seeing a man with no legs swimming like faster
than you could even imagine, and for her, like she
was like, that was such a really cool moment as
a parent to be able to be like, we have
so much more accessibility to exposure of all differences. I
would love to talk to you about where you were
at in terms of you know, and I know that
(16:28):
when you do a lot of these conversations. Obviously having
a facial difference is such a big thing that you
have advocated around for so long, but there's been a
whole other health journey that you've been on, and I
genuinely would like to say, like, firstly, your message to
me that you sent me was such a kick up
the ass because I was very complacent around the process
(16:49):
of getting my diagnosis for my ovarian cyst. I was
I was so so uncomfortable. Ovarian cysts have all of
the same symptoms as ovarian cancer. There's no way of
knowing until you go and get scanned. And the thing
is is the weight times around anything that's gynecological are insane,
Like the wait times are months and months and months,
(17:11):
and usually it's just a waiting game to see, well,
let's just check when it's changed or what's happened for me?
I know personally, to make an appointment to have an
operation to have that removed was about an eight month wait.
Speaker 5 (17:22):
Which is wild when you think about it.
Speaker 1 (17:24):
Yeah, and they were basically just like and in the meantime,
we'll just keep track of it to make sure that
either you don't get a torsion or it's not something
more sinister, and that I think that the anxiety that
surrounds that is really overwhelming for a lot of women.
I know. I had so many lifers who reached out
who have been in similar situations, but yours was really
such a unique and different situation. No varying cancer is
(17:47):
something we haven't spoken about a lot on the podcast,
but it's something that women need to be so much
more aware of and to be able to advocate for
themselves around it. Can you talk us through what happened
and what were their first telltales sign for you that
something wasn't right?
Speaker 2 (18:02):
Yeah, I think you say, Lauren, it's just such a
long period to diagnosis and it's really frustrating So one
of the traits of ichthiosis, particularly nethoton syndrome, is digestive symptoms.
So for a long time, for probably I don't know,
twenty years, I've had bloating when I've eaten like bread
(18:22):
and cake and stuff. And I've been tested for Celiac
and never, you know, that's never shown up, and I
kind of just thought, Oh, maybe it's just this is
just how life is, you know, Like the geneticists confirmed
that digestive issues are part of the condition. So I've
just kind of put up with it. And in early
twenty twenty four, the digestive issues got worse, so I
(18:44):
just moved house. I was really stressed, you know, moving
house is really stressful. I had had to go to
the toilet a lot, like a lot more than I've
had two in the past. So I would go to
the toilet for a pooh. And I'm going to talk
about pooh a lot.
Speaker 4 (18:59):
So no, that's it's important.
Speaker 2 (19:02):
I've never talked about poo so much in the lasting.
There's no shame.
Speaker 4 (19:06):
We all do it.
Speaker 2 (19:07):
We do. I was going to the toilet for poo
like between four and twelve times a day.
Speaker 4 (19:13):
Wow, that's so excessive.
Speaker 2 (19:15):
It was yeah, and it was just like constant diarrhea
and very runny pooh. And so initially in the first
two weeks. I saw a doctor after about two weeks
and I said, you know, this isn't going away. What's happening.
And then there was a bug that was going around
Melbourne that was attached to swimming pools and I don't swim.
I can't swim, I don't go into chlorine. I certainly
(19:37):
don't go into public pools. And I thought, oh, maybe
I've got that bug from like using you know, like
touching something or drinking from a cup or whatever that
wasn't washed properly. So we did all these tests for
that and nothing was coming up. One day, I had
to travel for work to Sydney and I was really
worried about it. I contacted the pharmacist and I said,
(19:57):
I have to travel today. What should I do? Can't
stop going to the toilet And he said, take some memodium.
Have a white food diet, you know, like mashed potatoes, bread,
and that did help in a way. But you know,
I was taking emodium and that that was okay. But
I remember being in the hotel thinking, oh my god,
there is not enough toilet paper for this situation. So
(20:19):
when I got back, I did go to the doctor
again and then I had some blood tests. I had
an ultrasound and the ultrasound came up with me having
a hernia. And I'm like, I don't do enough physical
activity for this.
Speaker 4 (20:33):
You know, the Mathee method.
Speaker 2 (20:35):
I don't understand, like maybe I got a hernia moving house,
like lifting a box. So I was about to go overseas.
I went overseas for eight weeks and I said, am
I able to go overseas with this hernia? And they
said yes. I still don't really know what a hernia
is and they explained it to me and they said,
maybe I'll have to have a thing, but at that
time an operation, but at that time there was it
(20:55):
was only two and a half centimeters, so they didn't
worry about it. And my dermslogist all connected with the
other specialists and everything, and they said to me, we'll
connect you with the gastro enterology department at the Royal
Melbourne Hospital and then when you get back you can
see them. So I was in touch with this nurse
had an appointment like a tally held appointment, and she
(21:16):
said yes, we will get you sorted, but just keep
in touch with us by email. And then she said
go and have this test. It was like a they
only do this test once a year or something that's
really expensive. And so I had like I had to
give a stool sample, and I remember they said to
me this is going to be seventy dollars or something,
but if if you do have something, you won't pay
(21:37):
for it, Like, yeah, you won't pay for it. Anyway,
So had this test and they said, no, nothing's coming up.
You've got no bowel is shoes, Like what clearly I do.
So went overseas. I went over to South Africa with
my mom and it was incredible. It was a writing
research trip and I so I was researching my family
and the party, the racial segregation law in South Africa,
(21:58):
and it was an amazing trip and I felt relatively
well except for needing to go to the toilet all
the time. After South Africa, after three weeks in South Africa,
I went to France on this amazing trip to event,
you know, the event products them and so I went
to the event hydro Therapy Center and it was incredible,
(22:18):
and I think that that really prepared my skin for
what was to come, because every day i'd have two
and a half hours of hydro therapy, so I would
go in their spa and I do heaps of treatment
and my skin was at its best and that was
really great. But still and I was having, you know,
going to the toilet a lot. I couldn't eat a lot,
like I think about all the food I couldn't eat
when I was overseas because I would get full really quickly.
(22:41):
I was losing a lot of weight, and I remember
my mum saying to me, Gosh, you're thin. But I
didn't really notice it because I dressed in baggy clothes.
I didn't, you know, I knew what my size was.
I was still wearing that size, but didn't really notice it.
And I don't weind myself, or I didn't then. So
we're away seven and a half weeks in total. And
on my way back from fran Ants, we had three
(23:01):
plane trips, three yeah, and I went from Montpellier to
Paris felt fine, And I went from Paris to Singapore
and I had worn a mask for all of that
time because I didn't want to get COVID, didn't want
to get sick, and I thought also I was in
a seat that my needed extra leg room because of
my skin, and the seat was really uncomfortable and really small,
(23:24):
and I was like, maybe I sat funny because I
feel really bad now that I'm in Singapore airport. I
felt really terrible, and I took my mask off and
I was a bit scared, but I'm like, I can't breathe,
and my diaphragm was like really hurting when I breathed.
And I went to the bathroom to have a shower.
That we went to the bathroom in the airport to
(23:44):
have a shower, and my mum was out in the
airport lounge having a wine already, and I had my
period and I was going to the toilet a lot,
and I'm just like, oh, maybe this is just period stuff.
And then I tried to put my socks on and
I couldn't. I sat on the couldn't bend down to
put my socks on, and I brang my mum and
I said, hey, I can't, I can't put my socks on.
(24:06):
Can you come on?
Speaker 4 (24:06):
Really unwell?
Speaker 2 (24:07):
And she's like I can't come. Someone will put drugs
in my bag and I'm like, Mum, it's fine, like,
so she came and then you know, like she helped
me put my socks and shoes on and then packed
my suitcase and we went out and then she had
a shower and I was just like laying on the
on the lounge out in the airport lounge and I
couldn't move, and I was like, I don't know what
(24:28):
to do. I don't know if I'm going to come
back to Australia. I don't know whether I feel well enough.
Speaker 3 (24:33):
When you say you couldn't move, Carlie, was it like,
were you just bloated? Was it pain like was there
blood in your stool?
Speaker 2 (24:38):
No? Blood? But I had my period and I just
thought maybe it's tummy cramps. Like I couldn't move forward
because it was so painful, painful and bloated, and also
I couldn't really breathe properly because I guess there was
a lot of fluid taking place taking up space in
my tummy. And so Mum arranged for me to get
a wheelchair to the gate and I just pretended to
(25:01):
be fine. When I got there, I flew Quantus, which
is great because the rest of the time I didn't
fly Quantus, and it was terrible, but flying Quantus, it
just felt like home. They were really great. They were like, oh,
are you okay? You didn't book with a wheelchair. I said, yeah,
I'm fine because I didn't want to stay in Singapore.
And the flight was half empty, which was useful because
it meant that I could lie down on a seat
(25:23):
like four seats and I got a seat belt extender
and it was only like eight hour flight or something.
So when I got back to Australia, I said to Mom,
I'll book into the doctor straight away, and I was
going to dial into work because we got home really
early in the morning. We got home at half us
five in the morning. I was home by seven. I thought,
I'm going to dial into work so I can beat
the jet lag, you know, like if I start work
(25:43):
at nine, I should be fine. Anyway, I rang the
doctor at nine and he's I couldn't get in until
like two. My doctor who i'd been seeing before had
gone on to matt leave, so I was seeing a
new doctor. I rang my manager and I said, hey,
I'm sorry, I'm not feeling great. I'm not going to
be dialing into work to the doctor at too. He
had never seen him before. He said, you have to
(26:04):
go to hospital right now. You have sepsis in your stomach,
like okay, like an infection. He said, you can't drive there.
Call your husband, he can come pick you up. So
my husband, who I hadn't literally hadn't seen for seven weeks,
came to the doctor came to pick me up. I
had to leave my car there. I got a packing fine,
but then I got out of it because.
Speaker 4 (26:23):
I fed my dad.
Speaker 2 (26:25):
Yeah, I know, right, Yeah. We went to hospital. The
doctor had written me a letter to hopefully get in quickly,
but I didn't. You know, I still had to wait
for four hours to see anyone. Got to the hospital
at four, didn't get a bed till nine o'clock. I
had a couple of blood tests in that time. I
also wasn't allowed to eat. I hadn't hadn't eaten, hadn't
really slept. I'd been on the plane for thirty hours
(26:45):
or whatever. And I was like, I was starving. I
had some food, and then they told me off for
having food in case i'd have to have the operation
that night. Yeah, And so I got into the emergency
ward and I had a bed and then and the
nurse was like, oh, We're just going to do some
test for cancer. And I said, oh, and I'm like,
what kind of cancer? And she says, oh, just yeah, numbers.
(27:08):
There's there's numbers. So they didn't really tell me what
the cancer was anyway. So then I had to have
a CT scan at midnight, sent Adam home to get
some sleep, and then at four in the morning, I
still wasn't really asleep. Four in the morning, this doctor
came in and he said, can you tell me your
cancer history and your family? And I'm like, there's never
(27:28):
a good time to talk about this, let alone at
four in the morning when I haven't had any sleep
from being you know, awake all the time from the plane.
He said, it's likely that you have our varian cancer,
but it's not confirmed yet. Don't get too ahead of yourself.
And I mentioned fandom before, I mentioned Savage Garden, and
I was like checking my DMS and I had replied
(27:49):
to something that Darren Hayes had put on Savage Garden,
and then like he was literally the first person I
told because like, yeah, I said, Hi, I think I
might have cancer. You know, we chat a bit anyway,
so he knows who I am. We've met before, and
so he was the first person I told, Like, I
couldn't tell Adam that by text, but I could tell Darren.
Speaker 3 (28:10):
You're like, sorry I told Darren before you now.
Speaker 2 (28:15):
Yeah, yeah, he's okay with it.
Speaker 4 (28:17):
He knows where he sits in the hierarchy.
Speaker 2 (28:19):
He does. So I was transferred to the Royal Women's.
The Yal Women's is attached to the Royal Melbourne and
I was transferred there and they let me sleep until
like ten. My message at him before and I said,
please don't go to work today, you know, I need
you to come in. So they did more tests when
I was in the Women's and he just wasn't coming
up as anything like I mean, it was coming up
that my cancer levels were high, but there was no confirmation.
(28:42):
So I was released and then I had to see
the hospital, see different surgeons and doctors in the hospital
when it was all very quick and it's like it's
like a full time job, you know. I had all
these more tests and more appointments, and they said the
only way they could find out whether I definitely had
answer was to have a hysterect to me.
Speaker 4 (29:02):
That is insane, I know, right.
Speaker 2 (29:05):
So I would have a full or partial hysterect to me,
depending on whether I had cancer. So they said, if
I didn't have cancer, they would have to do the operation,
the keyhole surgery, and if I didn't have cancer, they
would take my uterus and leave my ovaries, but if
I did have cancer, they'd take everything.
Speaker 3 (29:22):
Do they tell you why they can't do a biopsy
like they do or with every other type of cancer.
Speaker 2 (29:26):
Yes, because it would spread it. So they said that
they cannot do a biopsy because it would spread. And
so the pain that I was feeling in my stomach
was the I think it's called aceds and it's like
a liquid in your stomach where the cancer sits, and
that was what was sore. So I did have a
drain when I was in hospital. The first time they
(29:49):
drained it, and then I stopped going to the toilet.
And it's just like amazing what we put up with,
because I was thinking when I only needed to go
to the toilet two times a day, I was like,
oh gosh, is everything all right? Because I was so
used to going to the toilet twelve times a day.
So they did the drain the only way they could
do it. They could find out, you know, and like
we said before, there's no early detection test. I didn't
(30:09):
know how long I'd had this. Was it five months,
was it five years, I don't know. I got in
pretty quickly to have an operation and through the public system.
I was really impressed. It was like four weeks from
when I first went to hospital to the second time,
because the tumor was growing, like you know, it started
as that two point five centimeter hernia or whatever, and
(30:29):
then it was eleven centimeters when I went to hospital
the first time.
Speaker 4 (30:33):
This is the thing ovarian cancer.
Speaker 1 (30:35):
And I mean the symptoms if anyone who's had someone
in their family affected by it, or potentially even yourself listening,
the symptoms are so vague. The symptoms are symptoms that
often just pertain to things that as women, Yeah, as
women we go through monthly on our cycles, or if
you have endometrian pain. Like there's so many comparative symptoms
(30:58):
that are mixed up with it. And then on top
of that, the process of once is something is suspicious
or there could be an issue, it grows so quickly.
It's such a fast, rapidly developing cancer. And that's often
why for a lot of women it is not caught
until it's really far down the track.
Speaker 4 (31:13):
Even don't know if you listen to it.
Speaker 3 (31:14):
But Michelle from Shameless was talking about when she Yeah,
she wrote about it, she spoke about in a podcast,
but the level of pain we.
Speaker 4 (31:21):
Put up to.
Speaker 3 (31:22):
So she had like a cis burst in her kitchen.
She passed out from the pain and then just got
up when she recovered and just went to bed.
Speaker 4 (31:29):
She was like, Oh, I guess that's just something that
women go.
Speaker 3 (31:32):
Through like crazy, the level that we put up with
and how much we ignore, like a man would never.
Speaker 2 (31:39):
Yeah, no, no, not at all. Like it was so
strange to just have this. And even when I knew
that I, you know, that I had a tumor, I
would really notice the pain. Then like when I knew
what it was, I would notice the pain more. But
I remember saying to my mum, I'd feel full really quickly,
so I would eat something and I was only eating,
you know, like a third of what I'd normally eat,
(31:59):
and I would literally feel the digestion happening. And I
was saying to my mum, I've never felt my body
like this before, Like before I knew what it was,
I was saying this is so odd. I can I
can feel the something was wrong, Yeah, going down my
body going and then you know, no, sooner had I eaten,
I'd have to rush to the toilet. And I was
getting like spotting between periods, and I was getting the
(32:22):
you know, there wasn't weight gain, because weight gain can
be a part of my bearing cancer as well. There
was weight loss, and I remember after my operation, I
was just laughing with Mum about how my thighs used
to be quite chubby and now they were just like
chicken legs, Like they just didn't look wen.
Speaker 1 (32:37):
You know, even just this conversation about having to make
a decision about having a half a full hysterectomy, Like,
how did you process that? Because that is such a
huge thing for a woman to go through. I mean,
obviously the choice between having cancer and having kis directomy
doesn't give you much of a choice, But I wonder, like,
how was that period for you and in terms of consideration,
(32:58):
what did that look like?
Speaker 2 (32:59):
Yeah? I was in the hospital with one of my
best friends and she's like, are you all right? You
look really green right now? You look like you're going
to be sick. I wasn't sick, but I was just
it was just so much to process all at once.
So I said, what happens if I don't have this operation,
and they said, you'll get sicker, And I wasn't really
feeling sick, like it was just my tummy, and so
(33:21):
you know, I knew that I'd had to have it.
But also there was the consideration about how the skin
would heal. And fortunately I heal really quickly from cuts
and grapes and stuff, so I have no scarring and
it healed really quickly. But I had to make sure
that I was mitigating infection. It was good in that
when I have to go to hospital for a skin issue,
I don't often get prepared for that, so I wasn't
(33:44):
able to take you know, when I go to hospital
for skin I just go and what I'm wearing. I
often don't have the pajamas that I like, I don't
have my cranes. But when I was going for this,
I could prepare, Like I took my own douner, I
took my own pillow, I took a mattress protector so that,
you know, plastic matches wouldn't hurt my skin. So I
got to prepare for that. But you know I never
(34:04):
wanted children, you know, for the last ten years, I'd say,
you know, I've made a decision not to have children,
but I don't like that the chance and the choice
was taken away from me in that way. Like even
though I didn't want to have children, knowing that I
can't at all have children.
Speaker 4 (34:19):
Now feels different.
Speaker 2 (34:21):
Hard, It feels different.
Speaker 1 (34:22):
Yeah, yeah, I guess The thing is is like you
can make that decision voluntarily for yourself, but you always
know that if there is a moment where you might
decide that if you know, if and I know we've
had these conversations loads, but if something changes and you
change your mind, there is the choice there, but that
choice is completely taken.
Speaker 4 (34:40):
Away even changed in mind all the time.
Speaker 3 (34:42):
But this is I guess this has got two extra
layers to it. It's got multiple extra layers to it.
But firstly, they're saying, hey, you don't really have time
to think about it. You have to have this hysterectomy,
but also you might not actually have it, like we
can't be sure until.
Speaker 4 (34:55):
We've taken it out.
Speaker 5 (34:56):
And then secondly, it's like the repercussions of that, which
are things like early menopause, and are the change in
your body.
Speaker 2 (35:03):
So that was what I was really worried about when
when the surgeon talked to me about early menopause, she
said that, you know, there's a lot of risks for that.
There's you know, bone density, there's depression, there's like the
lack of estrogen means that lots of things in my
body will work differently. And so I was starting to
read a bit about menopause because I'm forty three and
you know, lots of my friends were going through it.
(35:24):
There's been a lot more media around it, but then
I just didn't have the time to get clued up
about it. And so fortunately when I was in South Africa,
i'd listened to em Mushiano's podcast and Analysts, which was
really great around ADHD and menopause, and I kind of
joke I was on my way to getting an ADHD diagnosis,
but then I got a cancer diagnosis, so I never
got my ADHD diagnosed derailed, but that was really validating
(35:49):
to know that I've done a little bit of preparation.
But I just didn't have enough time. And so you know,
they talked in that meeting, I reckon that the appointment
went for two hours, and they talked all about you know,
HRT and what I should take. And then they said,
you know, we don't want you on patches because they
might hurt your skin. The only thing that you should
take is gel tablets will be really bad. And they
(36:09):
talked all about the repercussions of like HRT medicine and
I'm like, whoa, There's so much to think about here totally,
And then and then they said I have to have
six weeks off work and I'm like, I've never had
six weeks off work before. What do I do? Like
what about money? I'm part you know, I work part time,
but also I'm a freelancer. And it was so much.
And then they said, you know, when you're recovering, you
can't do anything, like you can't do house you can't
(36:32):
do cooking. And I'm like, well, who's going to do
all this? It was just so much, so much.
Speaker 1 (36:36):
But also I mean, and I'm curious as to whether
when you live with a disability already and you have
to factor that into your every day I mean in
terms of I've heard you speak about it a little
bit before that that you know, having a disability became
a little bit easier when you became self sufficient, you
were able to take care of the things that were
needed to cater to yourself. But then you become slightly
(36:59):
incapacity because you're having to deal with this cancer diagnosis,
or also just the way in which systems within our
healthcare system are created for people who are able body,
we don't have as many variations when it comes to
catering for all different types of disabilities. How were you
further impacted that somebody who may be classified as able
(37:20):
body wouldn't be impacted if they had the same cancer diagnosis.
Speaker 2 (37:23):
Yeah, well, there was literally no information about ichthiosis and
cancer when I greged it like nothing, and there was
no information about ichthiosis and menopause. And I manage a
number of Facebook groups around ichthiosis. And I put in
an anonymous question because I didn't want to stay that
I had cancer yet or you know, I wasn't talking
(37:45):
about it publicly. I guess a bit like pregnancy, where
you know, you hide it for a while. And I
put a post up and I didn't talk about the
context either. I didn't say I might have cancer. This
is why I'm asking. I just said, is there any
information about ichthiosis and menopause, and a woman in Europe
with ichthiosis goes, oh, you'll just have to get on
with it, like we get on with everything else. And
(38:06):
I'm like, how dismiss it? How's helping the situation? It's
not helping, Like yes, And so one of the things
that it really taught me was that I have to
be really open about my condition because there was no
information about it. Like I've trailblaze by putting myself in
the media. I've got to now talk about cancer and
ichthiosis because there's nothing. And so I would have to
(38:29):
connect my hospital, like my dermatologists at the Royal Melbourne
with the women's doctors and the Peter Mack doctors. And
that was great because it was they were all in
the same hospital precinct and we all use the same
system to communicate. So that was fine. But it was
me educating the doctors and nurses around this. And you know,
like after my operation, I was up within like four
(38:51):
hours having a shower because I had to, Like if
I didn't have a shower, I would have been really sour.
So I had to really maintain that. But also like
I got time. That was the thing, like I got
time to take care of my skin because I was
not working, I was not doing anything. But when I
was in chemo, my skin got really really bad, and
it was the worst it's ever been. Like my skin
(39:12):
was falling off in massive chunks, like massive sheets. My
foot literally came off as my footprint, you know. Like
it was so bad and I've never had that level
of pain. But also I didn't have access to the
right pain killers. There was an admin error with them
sending it to my pharmacist. And I've never been in
that level of pain and never been in that level
(39:34):
of mental health despair as well. Like I didn't want
to continue with chemo. I just wanted to, Like I
said to my mum, if I can have five years
of living how I used to, I would take that
more than I would take chemo.
Speaker 1 (39:47):
That's the thing, isn't it. Like chemo is so it
is so savage to people bad to people who who
don't have a skin condition. I mean, but then you
go and you have chemo, and then you're so affected
by it in a different way that's just not been
thought through. Did you go through with the full chemo rounds?
Speaker 2 (40:05):
No? I had four rounds of chemo. Was supposed to
have six, so I had four rounds of chemo just
on my on its own, and then I had radiotherapy
and they were going to do radiotherapy and chemo at
the same time, but because of that, I didn't, and
they also took one of the medicines out. And one
of the things that I've been not saying, I've never
said what stage cancer I've had because I get so
(40:27):
much trolling. I didn't want people calculating how long I've
got to live, and also I know right, and I
never had I never said what type of medicine they
gave me during chemo because I didn't want to put
people off having chemo themselves because it was so Yeah.
Speaker 1 (40:43):
Did you experience trolling through this period?
Speaker 2 (40:47):
I hate to talk about it, but I actually just
talked about it the other day, so that's fine. It's
out there now. But people on a certain website was
saying that I faked having cancer.
Speaker 1 (40:56):
Oh my god, Carly, I'm so sorry that you haderience.
Speaker 4 (41:00):
And Australian website.
Speaker 2 (41:02):
It's the Tattle. Yeah. And actually, since I posted about
it my thread or sorry, I try not to take
ownership of it. The threads about me have gone since
I wrote about it.
Speaker 4 (41:14):
I mean, it's disgusting. We won't get into that now,
but I'm sorry you experienced it.
Speaker 2 (41:17):
Yeah, I bet I did have trolling. Yeah, aside from this,
I experienced a lot of lateral violence in the disability community,
so other disabled people trolling and bullying me, and I
had that during cancer treatment. Yeah.
Speaker 1 (41:29):
But also I think, I mean, this is part of
the conversation that we didn't have in terms of talking
about advocacy for disability. When you're the person who you
first front up and you speak about it, but then
you have to deal with the online commentary. You might
talk about the real life commentary you received and what
it was that you experienced in a shopping center or
how a child reacted or xyz. But then when you're
(41:51):
the person talking about it on the internet, you then
got to deal with all the hundreds or thousands or
whatever amount of people who have an opinion on the
experience that you had in real life.
Speaker 3 (42:00):
But what's the lateral bullying that you just said, Like,
why were other people in your community or other people
with the disability bullying you over this?
Speaker 2 (42:08):
It wasn't so much bullying me over cance. It was
just bullying in general, just for a very long time.
And I think it's around jealousy. I think it's around
the thought that there's not enough opportunity to go around.
I think it's around me or disabled people not doing
activism or addicacy in the same way that they would
want to. When I released my book, you know, I
(42:29):
had people say, oh, but you've got this responsibility. It
shouldn't be called say hello, you're just bringing upon unwanted
questions around.
Speaker 5 (42:36):
I mean nothing, you will be nothing right for everyone.
Speaker 4 (42:39):
We will see that.
Speaker 1 (42:41):
Yeah, And it's also the expectation when you become the
voice for everyone, there's so much pressure to do it perfectly,
and so this, you know, the small moments where maybe
it's not done perfectly, or it's not done perfectly in
the eyes of someone's subjective view, then they have an
opinion on how you did it wrong, rather than collectively
looking at all the things that you've done that have
been incredibly wonderful.
Speaker 2 (43:00):
Yeah, so that that's been hard. But also like I
kind of prioritize things in a different way, Like, you know,
I took time off and I was saying I don't
have time to get involved in this advocacy piece or
I don't, you know, I'm not going to focus on
the trolling. And one of the things that's happened thanks
to cancer, I guess, is that I've got access to
a lot more of her services than I did before.
(43:22):
So I have a psychologist now, and you know, I
do talk to her around about the trolling, but I
don't tend to focus on it as much because I
realized that I've been through that and I'm really strong,
you know, like I've been through cancer, and I'm really strong,
and I know my truth, like I'm not you know,
I wasn't faking it.
Speaker 3 (43:40):
Kylie as someone now that like we're so glad to
hear that you've come out of the other side and
you've beaten it, Like there's.
Speaker 5 (43:46):
I imagine there's no better news.
Speaker 3 (43:47):
What advice can you give to somebody now whose loved
one might be going through the same thing, Like what.
Speaker 4 (43:52):
Really helped you in this time? What supported you the most?
What can they be doing?
Speaker 2 (43:56):
Yeah, I think if you have if you have symptoms
like like I've talked about, you know, the vague symptoms,
definitely get checked. Go and ask if you can have
an optra sound if you can have blood tests for cancer.
I'm not saying this to scare people, but I never
thought that my bowel condition would be that. You know,
I remember messaging a friend with Crohn's disease really confident
that I would be supported because I knew how you know,
(44:19):
the advocacy that she does is so great, and I'm
like that if I have Crone's disease, that would be
fine because I know that other people have had been
through it. I never thought it would have to be cancer,
so go and get things checked. Also in terms of
like caring for someone with cancer, saying something not nothing
like I know, and sorry this doesn't mean I don't
mean to sound really negative here, but so many people
(44:40):
were there for me last year. It was incredible. You know,
people I hadn't met were sending me money through PayPal
and Patreon. But also I remember the people who weren't there.
So say something, you know, ask how someone is. Just
because you don't know what to say, it doesn't mean
you shouldn't say anything. You know, asking how you are,
asking what someone can do is useful. I found things
(45:02):
like meal vouchers really useful because I didn't want to cook.
I couldn't you know, at times I couldn't cook, so
you know, people would get me vouchers for a company
called the Dinner Ladies, which was really useful. They've got
like home staff, food, other things like Uber eats vouchers,
and the Uber Eats vouchers transferred to Uber vouchers as well.
So sometimes when I couldn't drive, I'd need to go
places and you know, that would pay for an Uber So.
Speaker 5 (45:25):
That was really useful and really thoughtful.
Speaker 2 (45:27):
Yeah, laundry vouchers were really great, so you know, places
that I could send my washing too, so I didn't
have to do the washing. And I was, you know,
having treatment and I had surgery during winter, so things
weren't getting as dry as quickly. Having that laundry vouch
was really good. Even just you know, if you don't
have any money to help, just being there, like being
on the other end of a text message sending three
(45:48):
suggestions of what to read and watch and listen to
is really good.
Speaker 3 (45:52):
Yeah, just knowing someone's there if you need them. Carlie,
thank you so much for coming and sharing your story. Honestly,
as a conversation we wanted to have for a really
long time.
Speaker 2 (46:01):
Thank you.
Speaker 1 (46:01):
I appreciate it genuinely, Like I said, thank you for
reaching out, because I really do believe like the only
person that's ever going to advocate for your own health
is yourself.
Speaker 4 (46:10):
Or Carli Carly.
Speaker 2 (46:13):
Yeah. One of the things that's happened to me since
you know, being really public about my story is having
people with your birosists who have been diagnosed with cats
so message me to say my stuff has really helped them.
I had a woman message me and I made it
public a few months ago who read all the symptoms
that I had and had the same symptoms and got
an early diagnosis and her prognosis is really great. So
(46:35):
that's incredible to know that.
Speaker 3 (46:36):
That's so so amazing to even if you know, even
if you're just helping one person, but at the end
of the day, you're helping so many more than one person.
You are, like you said, a trailblazer and a leader
in this space because other people haven't spoken about it.
So I guess like, in a way, congratulations just for
like putting yourself out there and it's not easy and
it's exhausting, and a lot of people don't realize what
(46:57):
comes along with being the face or a trailblazer of
using which is the constant exhaustion and the.
Speaker 5 (47:02):
Trolling and everything that comes along with it.
Speaker 3 (47:04):
You know, we just see someone tell their story, but
we don't realize what you're going through at the same time.
Speaker 1 (47:08):
So like and also on that the fact that you've
told your story, you know, you tell it to us
and we're so grateful for it, but like you've told
it a hundred ye yeah, yeah, exactly, yeah.
Speaker 2 (47:18):
Thank thank you for having me.
Speaker 4 (47:19):
On anyone that wants to know more.
Speaker 3 (47:21):
We're going to link out all of Carl's writings and
website in a show notes, so you can go and
click on that and have a look.
Speaker 5 (47:26):
Thank you so much, Carlie, thank you, thank you so much.
Speaker 2 (47:28):
That was great.
This episode was recorded on cameragle Land. Hi guys, and
welcome back to another episode of Life. I'm cut, I'm Laura,
I'm Brittany, and I am so excited for today's interview.
Now we are joined by Carlie Finlay. She's an award
(00:21):
winning writer, speaker, and an appearance and disability advocate. Carlie
was born with a rare skin condition called ichthyosis.
Speaker 2 (00:29):
Now.
Speaker 1 (00:29):
This is a rare genetic condition where skin overproduces dry, scaly,
thickened skin and can be incredibly painful and in severe cases,
resulting in facial differences. Carli has spoken widely about what
it was like growing up, how she came to embrace
the term disabled later in life, and the pressures to
constantly explain or justify your body to others. She's also
(00:51):
published two wonderful books titled Say Hello and Growing Up
Disabled in Australia. Now, you guys might remember a couple
of months ago, I was talking about my experience of
being diagnosed with a nine centimeter overian cyst and how
it had for a very long time gone undiagnosed, Their
pain that I was experiencing, and also the mishandling through
(01:14):
I guess the system and the waiting times in which
it took to get that diagnosis. Carlie reached out to
me in my DMS. And not only has Carlie been
a fantastic advocate across the space of speaking about disability,
but something that she mentioned to me in those DMS
is that she had recently been diagnosed with ovarian cancer.
Now we all know that there is no pre screening
(01:36):
test for ovarian cancer, it is also something that for
so many women goes hugely undiagnosed until the symptoms are
something that cannot be denied. And it was really I
mean for me when Kylie reached out, I had this
real moment where there was validation to I guess how
much the system is flawed. But also I really wanted
(01:57):
to be able to have this conversation on the pod
and for Carlie to share what she has experienced, because
I mean, we're so grateful to hear that the outcome
now is something that is incredibly positive, but for so
many women who experience over in cancer it can be
a very very different outcome. Carlie, Welcome to the show.
Speaker 2 (02:14):
Hello. That was such a nice introduction, Carlie.
Speaker 3 (02:17):
We kicked out every single episode with accidentally unfiltered your
most embarrassing story.
Speaker 4 (02:22):
So do you have one you can bring to the table.
Speaker 2 (02:25):
I had a recent one. Actually, I work at Melbourne
Fringe Arts Festival and my phone wasn't working, like the
desk's phone wasn't working a few weeks ago, and I
said to my manager, I think I need a new phone.
It's not working, it's not ringing. And the tech person
in our office said, oh, let me have a look
at it for you. And it wasn't plugged in.
Speaker 5 (02:49):
Do you know I actually was so funny.
Speaker 3 (02:52):
Like two weeks ago at my wedding, my sister were
in a hotel and she's got a little baby, Maya,
and she was trying to boil the jug to sterilize
her bottle and it wasn't working. And this was quite
an expensive hotel, and she called them and she goes, look,
this is like ridiculous. It's late at night. I'm trying
to sterilize my baby's bottles. Your appliances aren't working. Can
someone come and fix it?
Speaker 4 (03:10):
Anyway? They come down and have a look and they
just plug it in. Just wasn't even plugged in.
Speaker 1 (03:14):
I think everyone can relate to this. I did the
same on the weekend. I called Appliances online irate because
we'd bought a new TV and it wasn't working. The
setup wasn't working. Turns out you have to charge the remote.
So look, we've all been there.
Speaker 4 (03:25):
Carly, don't worry.
Speaker 2 (03:26):
You're not alone.
Speaker 1 (03:27):
I know that there's so much of the conversation that
we're going to have today is around where you were
at in your health journey with avarian cancer. But I
think for anyone who isn't necessarily familiar with your story,
I would love to know a little bit more about,
like what your childhood was like, and also what the
diagnosis process was like when you were a kid, and
the experience of growing up with a facial difference, especially
(03:49):
at a time when I think there wasn't social media
and kids are bloody cruel, and I guess in that sense,
like I do, think that we've potentially and mean And
I would love your opinion on this. There's been some
changes in the last few years in how kids are
raised and exposure to different things, but of that time,
I think it's just something that was so incredibly othering.
Speaker 2 (04:10):
Yeah, absolutely so. I grew up in a really small
town near Aubrey. The town had about five hundred people,
and my mum and dad are also a mixed race,
so there was that factor. It was a really religious town,
and so when people would, you know, talk about me,
they would say that I have sinned because my parents
are black and white. Oh my god, I know. And
(04:34):
so there was no kind of reasoning around a genetic condition.
It was just like, well, you know, your parents have
done this evil thing and that's why you're like this.
So I was born with ichthyosis, and there was a
little bit known. I was born in the eighties. There
was a little bit known about it at the time,
but not much. So I was diagnosed with it at birth.
But then when I was ten, they did some genetic testing,
(04:57):
so a biopsy, and they found out that I they
have a different type to what I was diagnosed with initially,
although sometimes when I read my file, I think they
state that the name of the first diagnosis, which is
ichthyosa form orthroderma, which the formerythroderma means red skin and
(05:18):
deerma I think is Latin the red skin or Greek something.
Take that bit out. When I was diagnosed with the
erythroderma at the start. I still see that written down
as a trait of my condition. Now, so that must
mean some sort of like physical trait of ichthyosis. But
(05:39):
when I got the Nethertons diagnosis, it didn't change anything.
It just meant that it was like confirmed what I had.
It didn't change the treatment it didn't have, It didn't
change the symptoms. It was just another word for it.
Speaker 1 (05:51):
Something I learned in what I was researching about this
is just the spectrum of what exists with ichthyosis and
how it can be anything from something that's quite mild
to something that's incredibly life threatening for some people. Yeah,
would you be able to give us a bit of
an explanation on what that is for you and where
you sit on that spectrum of severity?
Speaker 2 (06:12):
Yeah? Sure. So I have neverden syndrome, and that is
on the severe end. So for me, obviously, I've got
a facial difference. My skin's really red and scaly, it's
shiny because I use ointment. I use a parafferne ointment
similar to vascialine, and it can result in really bad
infection and pain. So I take painkillers every day to
manage the pain. And it's more socially challenging, I think
(06:35):
than medically challenging, where people stare and comment and say
rude things and intrusive questions.
Speaker 3 (06:42):
And is it something that affects only like your face
or do you get it on other parts of your body?
Speaker 2 (06:48):
My whole body, But my face I think is the
reddest because it's exposed to the elements, But my whole
body is. It's quite passable for not having a skin
condition most of the time, but my body is the sorest.
So my face rarely gets sore, but my body gets
the sorest and the most infection pain.
Speaker 3 (07:08):
When you talk about the fact that it's a rare
genetic condition, how rare are we talking?
Speaker 4 (07:12):
Do you have the stats on them?
Speaker 2 (07:14):
Maybe like one in a million? Wow? Wow, there's not
many people with the condition, But I know a lot
of people with the condition obviously, you know, I know
probably everyone we think theiosis in Australia, i'd say, or
with severe ethiosis. Because we're all in touch with you know,
support groups and online.
Speaker 1 (07:31):
I can imagine what was your schooling like and what
we're I mean, you know, not just in primary school
or high school, but like in those early formative years
when like I said, kids can be mean, but also
they're also not necessarily sure how to approach conversations and
sometimes do it really cruelly. How did you manage that time?
Speaker 2 (07:49):
Yeah, it wasn't great. I didn't like I mean, I
liked school in terms of the academia, but I didn't
love it in terms of the socialization. So kids who
were very exclusionary, you know, there were those kind of
rumors et cetera, where you know, I was told that,
you know, I'd sinned, or lots of people would make
things up as well, you know, like Carlie's got skin cancer,
or Carlie's been burnt or been some burnt. So there
(08:11):
was that. I thought that maybe when it got to
high school it'd be easier, Like I remember my mum saying,
you know, it'd be easier when you get to high school.
But I don't think it was. I think it was
just as hard at primary school as high school. I
spent a lot of time in the library, reading and writing.
Fandom was a really big thing for me, so becoming
a fan of particularly Savage Garden. I know, like lots
(08:31):
of people say that's all I talk about.
Speaker 4 (08:33):
I'm a Savage Garden fan.
Speaker 2 (08:36):
But having that level of like fandom and community when
I was a teenager. I really found myself in that.
When I was about fourteen or fift when I was
probably fifteen, the school librarian said to me that I
should stop looking up Savage Garden on internet.
Speaker 4 (08:53):
And we've looked out urch history, Carli.
Speaker 2 (08:55):
Yeah, yeah, and this is like when the Internet first came,
you know, So that's all I I was using it for.
And then she said, she said that I should look
up ichthiosis, and I did, and I found people with
the condition. And you know, back then, you couldn't easily
upload a photo. You know how long it took in
the nineties to upload of course, so I didn't see
anyone with the condition. So I kind of just assumed
(09:17):
that I looked like this, and they looked like they do.
But I didn't think that we all looked the same.
And so one of the genetic traits about ichthyosis is
that you look more like a person with ichthiosis that
you do your sibling or family member. And so yeah,
so we look very similar, we have very similar traits.
So I was chatting to these people online and then
(09:39):
I could see what was possible. But I don't think
I saw anyone in person or like on TV with
the condition until about nineteen ninety nine when there was
this show on Channel nine called Medical Incredible. And I
remember seeing like people would saying, oh, this show was
on Channel nine on what Thursday or whatever. And I
wrote to Channel nine because in the time that once
(10:01):
a TV showed aired, you could never watch it again,
and so like, I wrote to them and I said,
could you send me the VHS on the show? And
they did, and then I, you know, I saw people
with the condition. And then, as you know, I grew
in confidence. I started writing about my condition more and
finding other people. Yeah, so now I've met lots of people.
Speaker 3 (10:20):
Yeah, how did the I guess your experience in your
younger years and your teenage years with inclusion and exclusion.
Was there a defining moment that shaped your decision to say, Hey,
you know what, I'm not going to let this make
me shy away and become a wallflower, Like I'm going
to be a voice and I want to be on
the TV. And like, what was the moment that made
you think, do you know what, I'm going to absolutely
own this and change some other people's life.
Speaker 2 (10:42):
Yeah, I think it was when like in my twenties,
I started to mentor people with chronic illnesses at the
hospital and I realized that, yes, I have chronic illness.
I have all the same things that they do, even
though it was different diagnosis. So lots of time in hospital,
lots of specialists, lots of time school, social barriers, and
I'm like, yeah, okay, I identified there. And then I
(11:05):
started writing more about my condition, like when we had
MySpace and I was writing a lot about that, and
people related to it, so I wrote, you know, more,
and then I just found it easier to love myself
than to hate myself, and to be myself rather than
to change. And like a lot of the media is
terrible around idiosis. There's really bad headlines like snake skinned
(11:27):
woman and mermaid baby and you know, really dehumanizing stuff,
and so I wanted to change that, and that's why
I started writing more.
Speaker 1 (11:34):
In terms of like when you say really dehumanizing coverage,
as in that's written by journalists that's so hideous but
yet not.
Speaker 2 (11:43):
Surprising, not surprising. And the other thing is I've seen
people have quite content warnings above their faces in articles
as well, but also like it's really exploitative, and I
often say, I don't want to see another article about
ikciosis sun I've written it myself.
Speaker 1 (12:01):
But also like, how deeply offensive to anyone to think
that somebody, the way somebody shows up in the world
because they have a facial difference needs to be a
trigger warning for someone else. I mean, you would see
it all the time. And I think it is such
an incredible privilege of someone who doesn't have a facial
difference because we probably wouldn't have even recognized it necessarily
(12:22):
that that existed in the way that you were exposed
to it every single day, And the things that you
have to highlight and then educate people on, And how
do you deal with the exhaustion side of it, because
I only imagine and we have this conversation not just
about ableism, but anyone who has to do the education
around race or any sort of minority groups. How do
(12:45):
you deal with the unrelenting firstly the questions that are
insensitive and unkind and secondly around the constant education piece.
Speaker 2 (12:55):
Yeah, it's exhausting, and I mean I've definitely you know,
we mentioned earlier that I had very in cancer. I've
definitely taken a step back from advocating after that or
during that time, so I've kind of preserving my energy.
But you know, when I talk to people about their
social media post is really offensive because they've mocked a
(13:16):
person with facial difference, even if it's like mocking themselves.
For example, like if someone has a you know, like
their wisdom teeth out and then their face gets swollen
and they're mocking themselves, and I'm like, hey, I don't
know whether you realize, but this is really offensive. And
often they are really defensive about it. They're like, oh, no,
I wasn't saying this towards a disabled person. I was
saying it about myself. And I'm like, yeah, but even
(13:36):
when it's about yourself, it's still really offensive. And often
people with beauty privilege, you know, they get the jobs,
they get work that I don't get, and they're mocking themselves. Yeah.
Speaker 1 (13:47):
I feel like that the defensiveness comes because like the yeah, yeah, yeah,
it's true. The only other place to go to is
acceptance and then accepting responsibility for doing something that you
know is shameful.
Speaker 2 (13:58):
I guess absolutely.
Speaker 3 (14:00):
I think something interesting and in your book You're released
in twenty nineteen.
Speaker 4 (14:04):
Say Hello.
Speaker 3 (14:05):
You said that the book is called say Hello, because
that's what I want people to do instead of ignoring me,
looking shocked or scared, or making a rude comment about
my face. I would love to get your take on
how you think mothers or fathers with small children should
approach a situation when they see somebody that looks different.
Speaker 4 (14:24):
And I say this because we've spoken about it.
Speaker 3 (14:26):
In the past, like with Ellie Cole Springs to mind
our paralympian friend who has one leg, and you know,
she says kids often point to her and look at
her because she looks so different. And I would love
to know personally from your experience, what guidance would you
give to parents and how to educate their children. Would
you want them to come and talk to you, would
you want them just to explain from afar?
Speaker 2 (14:47):
Yeah, I think it's really important to know that the
disabled person shouldn't have to educate at all times. So
if their child is pointing or asking questions about me,
chances are they're not the first child to do that
in the day fucking sixhausting. I generally don't mind it,
you know, I'll say like I was born like this,
like you were born with your blue eyes. But also
(15:07):
like if they're really rude, sometimes I'll tell them that,
you know, they're being really rude, like a point, you know, yeah,
don't don't point, don't stare. And if they're like I've
had experiences where they'll cry or they'll they'll get scared,
and I'll say to their parents, like you have it's
your responsibility to educate your child. And one of the
things that I think about a lot is the power
(15:28):
of social media. And I'm not saying to sign your
child up to social media. I'm not saying that. But
when you are scrolling through your social media, show your
children diverse people, follow diverse people, show your children. You know,
a lot of my friends with children, they're really prepared
to meet me because they've seen me online.
Speaker 1 (15:45):
I also think, you know, I mean, I have two
little kids, and one of the most transformative for their
perception around just differences in general was watching the Paralympics.
Mark like my oldest, my five year old, she was
just so in awe. And I know that that's not
always the benchmark, because I do think that sometimes when
we talk about disability, we wrap it up in like
but here's an Olympian, but it was something that I
(16:08):
think was incredible for her to see because you know,
she's seeing a man with no legs swimming like faster
than you could even imagine, and for her, like she
was like, that was such a really cool moment as
a parent to be able to be like, we have
so much more accessibility to exposure of all differences. I
would love to talk to you about where you were
at in terms of you know, and I know that
(16:28):
when you do a lot of these conversations. Obviously having
a facial difference is such a big thing that you
have advocated around for so long, but there's been a
whole other health journey that you've been on, and I
genuinely would like to say, like, firstly, your message to
me that you sent me was such a kick up
the ass because I was very complacent around the process
(16:49):
of getting my diagnosis for my ovarian cyst. I was
I was so so uncomfortable. Ovarian cysts have all of
the same symptoms as ovarian cancer. There's no way of
knowing until you go and get scanned. And the thing
is is the weight times around anything that's gynecological are insane,
Like the wait times are months and months and months,
(17:11):
and usually it's just a waiting game to see, well,
let's just check when it's changed or what's happened for me?
I know personally, to make an appointment to have an
operation to have that removed was about an eight month wait.
Speaker 5 (17:22):
Which is wild when you think about it.
Speaker 1 (17:24):
Yeah, and they were basically just like and in the meantime,
we'll just keep track of it to make sure that
either you don't get a torsion or it's not something
more sinister, and that I think that the anxiety that
surrounds that is really overwhelming for a lot of women.
I know. I had so many lifers who reached out
who have been in similar situations, but yours was really
such a unique and different situation. No varying cancer is
(17:47):
something we haven't spoken about a lot on the podcast,
but it's something that women need to be so much
more aware of and to be able to advocate for
themselves around it. Can you talk us through what happened
and what were their first telltales sign for you that
something wasn't right?
Speaker 2 (18:02):
Yeah, I think you say, Lauren, it's just such a
long period to diagnosis and it's really frustrating So one
of the traits of ichthiosis, particularly nethoton syndrome, is digestive symptoms.
So for a long time, for probably I don't know,
twenty years, I've had bloating when I've eaten like bread
(18:22):
and cake and stuff. And I've been tested for Celiac
and never, you know, that's never shown up, and I
kind of just thought, Oh, maybe it's just this is
just how life is, you know, Like the geneticists confirmed
that digestive issues are part of the condition. So I've
just kind of put up with it. And in early
twenty twenty four, the digestive issues got worse, so I
(18:44):
just moved house. I was really stressed, you know, moving
house is really stressful. I had had to go to
the toilet a lot, like a lot more than I've
had two in the past. So I would go to
the toilet for a pooh. And I'm going to talk
about pooh a lot.
Speaker 4 (18:59):
So no, that's it's important.
Speaker 2 (19:02):
I've never talked about poo so much in the lasting.
There's no shame.
Speaker 4 (19:06):
We all do it.
Speaker 2 (19:07):
We do. I was going to the toilet for poo
like between four and twelve times a day.
Speaker 4 (19:13):
Wow, that's so excessive.
Speaker 2 (19:15):
It was yeah, and it was just like constant diarrhea
and very runny pooh. And so initially in the first
two weeks. I saw a doctor after about two weeks
and I said, you know, this isn't going away. What's happening.
And then there was a bug that was going around
Melbourne that was attached to swimming pools and I don't swim.
I can't swim, I don't go into chlorine. I certainly
(19:37):
don't go into public pools. And I thought, oh, maybe
I've got that bug from like using you know, like
touching something or drinking from a cup or whatever that
wasn't washed properly. So we did all these tests for
that and nothing was coming up. One day, I had
to travel for work to Sydney and I was really
worried about it. I contacted the pharmacist and I said,
(19:57):
I have to travel today. What should I do? Can't
stop going to the toilet And he said, take some memodium.
Have a white food diet, you know, like mashed potatoes, bread,
and that did help in a way. But you know,
I was taking emodium and that that was okay. But
I remember being in the hotel thinking, oh my god,
there is not enough toilet paper for this situation. So
(20:19):
when I got back, I did go to the doctor
again and then I had some blood tests. I had
an ultrasound and the ultrasound came up with me having
a hernia. And I'm like, I don't do enough physical
activity for this.
Speaker 4 (20:33):
You know, the Mathee method.
Speaker 2 (20:35):
I don't understand, like maybe I got a hernia moving house,
like lifting a box. So I was about to go overseas.
I went overseas for eight weeks and I said, am
I able to go overseas with this hernia? And they
said yes. I still don't really know what a hernia
is and they explained it to me and they said,
maybe I'll have to have a thing, but at that
time an operation, but at that time there was it
(20:55):
was only two and a half centimeters, so they didn't
worry about it. And my dermslogist all connected with the
other specialists and everything, and they said to me, we'll
connect you with the gastro enterology department at the Royal
Melbourne Hospital and then when you get back you can
see them. So I was in touch with this nurse
had an appointment like a tally held appointment, and she
(21:16):
said yes, we will get you sorted, but just keep
in touch with us by email. And then she said
go and have this test. It was like a they
only do this test once a year or something that's
really expensive. And so I had like I had to
give a stool sample, and I remember they said to
me this is going to be seventy dollars or something,
but if if you do have something, you won't pay
(21:37):
for it, Like, yeah, you won't pay for it. Anyway,
So had this test and they said, no, nothing's coming up.
You've got no bowel is shoes, Like what clearly I do.
So went overseas. I went over to South Africa with
my mom and it was incredible. It was a writing
research trip and I so I was researching my family
and the party, the racial segregation law in South Africa,
(21:58):
and it was an amazing trip and I felt relatively
well except for needing to go to the toilet all
the time. After South Africa, after three weeks in South Africa,
I went to France on this amazing trip to event,
you know, the event products them and so I went
to the event hydro Therapy Center and it was incredible,
(22:18):
and I think that that really prepared my skin for
what was to come, because every day i'd have two
and a half hours of hydro therapy, so I would
go in their spa and I do heaps of treatment
and my skin was at its best and that was
really great. But still and I was having, you know,
going to the toilet a lot. I couldn't eat a lot,
like I think about all the food I couldn't eat
when I was overseas because I would get full really quickly.
(22:41):
I was losing a lot of weight, and I remember
my mum saying to me, Gosh, you're thin. But I
didn't really notice it because I dressed in baggy clothes.
I didn't, you know, I knew what my size was.
I was still wearing that size, but didn't really notice it.
And I don't weind myself, or I didn't then. So
we're away seven and a half weeks in total. And
on my way back from fran Ants, we had three
(23:01):
plane trips, three yeah, and I went from Montpellier to
Paris felt fine, And I went from Paris to Singapore
and I had worn a mask for all of that
time because I didn't want to get COVID, didn't want
to get sick, and I thought also I was in
a seat that my needed extra leg room because of
my skin, and the seat was really uncomfortable and really small,
(23:24):
and I was like, maybe I sat funny because I
feel really bad now that I'm in Singapore airport. I
felt really terrible, and I took my mask off and
I was a bit scared, but I'm like, I can't breathe,
and my diaphragm was like really hurting when I breathed.
And I went to the bathroom to have a shower.
That we went to the bathroom in the airport to
(23:44):
have a shower, and my mum was out in the
airport lounge having a wine already, and I had my
period and I was going to the toilet a lot,
and I'm just like, oh, maybe this is just period stuff.
And then I tried to put my socks on and
I couldn't. I sat on the couldn't bend down to
put my socks on, and I brang my mum and
I said, hey, I can't, I can't put my socks on.
(24:06):
Can you come on?
Speaker 4 (24:06):
Really unwell?
Speaker 2 (24:07):
And she's like I can't come. Someone will put drugs
in my bag and I'm like, Mum, it's fine, like,
so she came and then you know, like she helped
me put my socks and shoes on and then packed
my suitcase and we went out and then she had
a shower and I was just like laying on the
on the lounge out in the airport lounge and I
couldn't move, and I was like, I don't know what
(24:28):
to do. I don't know if I'm going to come
back to Australia. I don't know whether I feel well enough.
Speaker 3 (24:33):
When you say you couldn't move, Carlie, was it like,
were you just bloated? Was it pain like was there
blood in your stool?
Speaker 2 (24:38):
No? Blood? But I had my period and I just
thought maybe it's tummy cramps. Like I couldn't move forward
because it was so painful, painful and bloated, and also
I couldn't really breathe properly because I guess there was
a lot of fluid taking place taking up space in
my tummy. And so Mum arranged for me to get
a wheelchair to the gate and I just pretended to
(25:01):
be fine. When I got there, I flew Quantus, which
is great because the rest of the time I didn't
fly Quantus, and it was terrible, but flying Quantus, it
just felt like home. They were really great. They were like, oh,
are you okay? You didn't book with a wheelchair. I said, yeah,
I'm fine because I didn't want to stay in Singapore.
And the flight was half empty, which was useful because
it meant that I could lie down on a seat
(25:23):
like four seats and I got a seat belt extender
and it was only like eight hour flight or something.
So when I got back to Australia, I said to Mom,
I'll book into the doctor straight away, and I was
going to dial into work because we got home really
early in the morning. We got home at half us
five in the morning. I was home by seven. I thought,
I'm going to dial into work so I can beat
the jet lag, you know, like if I start work
(25:43):
at nine, I should be fine. Anyway, I rang the
doctor at nine and he's I couldn't get in until
like two. My doctor who i'd been seeing before had
gone on to matt leave, so I was seeing a
new doctor. I rang my manager and I said, hey,
I'm sorry, I'm not feeling great. I'm not going to
be dialing into work to the doctor at too. He
had never seen him before. He said, you have to
(26:04):
go to hospital right now. You have sepsis in your stomach,
like okay, like an infection. He said, you can't drive there.
Call your husband, he can come pick you up. So
my husband, who I hadn't literally hadn't seen for seven weeks,
came to the doctor came to pick me up. I
had to leave my car there. I got a packing fine,
but then I got out of it because.
Speaker 4 (26:23):
I fed my dad.
Speaker 2 (26:25):
Yeah, I know, right, Yeah. We went to hospital. The
doctor had written me a letter to hopefully get in quickly,
but I didn't. You know, I still had to wait
for four hours to see anyone. Got to the hospital
at four, didn't get a bed till nine o'clock. I
had a couple of blood tests in that time. I
also wasn't allowed to eat. I hadn't hadn't eaten, hadn't
really slept. I'd been on the plane for thirty hours
(26:45):
or whatever. And I was like, I was starving. I
had some food, and then they told me off for
having food in case i'd have to have the operation
that night. Yeah, And so I got into the emergency
ward and I had a bed and then and the
nurse was like, oh, We're just going to do some
test for cancer. And I said, oh, and I'm like,
what kind of cancer? And she says, oh, just yeah, numbers.
(27:08):
There's there's numbers. So they didn't really tell me what
the cancer was anyway. So then I had to have
a CT scan at midnight, sent Adam home to get
some sleep, and then at four in the morning, I
still wasn't really asleep. Four in the morning, this doctor
came in and he said, can you tell me your
cancer history and your family? And I'm like, there's never
(27:28):
a good time to talk about this, let alone at
four in the morning when I haven't had any sleep
from being you know, awake all the time from the plane.
He said, it's likely that you have our varian cancer,
but it's not confirmed yet. Don't get too ahead of yourself.
And I mentioned fandom before, I mentioned Savage Garden, and
I was like checking my DMS and I had replied
(27:49):
to something that Darren Hayes had put on Savage Garden,
and then like he was literally the first person I
told because like, yeah, I said, Hi, I think I
might have cancer. You know, we chat a bit anyway,
so he knows who I am. We've met before, and
so he was the first person I told, Like, I
couldn't tell Adam that by text, but I could tell Darren.
Speaker 3 (28:10):
You're like, sorry I told Darren before you now.
Speaker 2 (28:15):
Yeah, yeah, he's okay with it.
Speaker 4 (28:17):
He knows where he sits in the hierarchy.
Speaker 2 (28:19):
He does. So I was transferred to the Royal Women's.
The Yal Women's is attached to the Royal Melbourne and
I was transferred there and they let me sleep until
like ten. My message at him before and I said,
please don't go to work today, you know, I need
you to come in. So they did more tests when
I was in the Women's and he just wasn't coming
up as anything like I mean, it was coming up
that my cancer levels were high, but there was no confirmation.
(28:42):
So I was released and then I had to see
the hospital, see different surgeons and doctors in the hospital
when it was all very quick and it's like it's
like a full time job, you know. I had all
these more tests and more appointments, and they said the
only way they could find out whether I definitely had
answer was to have a hysterect to me.
Speaker 4 (29:02):
That is insane, I know, right.
Speaker 2 (29:05):
So I would have a full or partial hysterect to me,
depending on whether I had cancer. So they said, if
I didn't have cancer, they would have to do the operation,
the keyhole surgery, and if I didn't have cancer, they
would take my uterus and leave my ovaries, but if
I did have cancer, they'd take everything.
Speaker 3 (29:22):
Do they tell you why they can't do a biopsy
like they do or with every other type of cancer.
Speaker 2 (29:26):
Yes, because it would spread it. So they said that
they cannot do a biopsy because it would spread. And
so the pain that I was feeling in my stomach
was the I think it's called aceds and it's like
a liquid in your stomach where the cancer sits, and
that was what was sore. So I did have a
drain when I was in hospital. The first time they
(29:49):
drained it, and then I stopped going to the toilet.
And it's just like amazing what we put up with,
because I was thinking when I only needed to go
to the toilet two times a day, I was like,
oh gosh, is everything all right? Because I was so
used to going to the toilet twelve times a day.
So they did the drain the only way they could
do it. They could find out, you know, and like
we said before, there's no early detection test. I didn't
(30:09):
know how long I'd had this. Was it five months,
was it five years, I don't know. I got in
pretty quickly to have an operation and through the public system.
I was really impressed. It was like four weeks from
when I first went to hospital to the second time,
because the tumor was growing, like you know, it started
as that two point five centimeter hernia or whatever, and
(30:29):
then it was eleven centimeters when I went to hospital
the first time.
Speaker 4 (30:33):
This is the thing ovarian cancer.
Speaker 1 (30:35):
And I mean the symptoms if anyone who's had someone
in their family affected by it, or potentially even yourself listening,
the symptoms are so vague. The symptoms are symptoms that
often just pertain to things that as women, Yeah, as
women we go through monthly on our cycles, or if
you have endometrian pain. Like there's so many comparative symptoms
(30:58):
that are mixed up with it. And then on top
of that, the process of once is something is suspicious
or there could be an issue, it grows so quickly.
It's such a fast, rapidly developing cancer. And that's often
why for a lot of women it is not caught
until it's really far down the track.
Speaker 4 (31:13):
Even don't know if you listen to it.
Speaker 3 (31:14):
But Michelle from Shameless was talking about when she Yeah,
she wrote about it, she spoke about in a podcast,
but the level of pain we.
Speaker 4 (31:21):
Put up to.
Speaker 3 (31:22):
So she had like a cis burst in her kitchen.
She passed out from the pain and then just got
up when she recovered and just went to bed.
Speaker 4 (31:29):
She was like, Oh, I guess that's just something that
women go.
Speaker 3 (31:32):
Through like crazy, the level that we put up with
and how much we ignore, like a man would never.
Speaker 2 (31:39):
Yeah, no, no, not at all. Like it was so
strange to just have this. And even when I knew
that I, you know, that I had a tumor, I
would really notice the pain. Then like when I knew
what it was, I would notice the pain more. But
I remember saying to my mum, I'd feel full really quickly,
so I would eat something and I was only eating,
you know, like a third of what I'd normally eat,
(31:59):
and I would literally feel the digestion happening. And I
was saying to my mum, I've never felt my body
like this before, Like before I knew what it was,
I was saying this is so odd. I can I
can feel the something was wrong, Yeah, going down my
body going and then you know, no, sooner had I eaten,
I'd have to rush to the toilet. And I was
getting like spotting between periods, and I was getting the
(32:22):
you know, there wasn't weight gain, because weight gain can
be a part of my bearing cancer as well. There
was weight loss, and I remember after my operation, I
was just laughing with Mum about how my thighs used
to be quite chubby and now they were just like
chicken legs, Like they just didn't look wen.
Speaker 1 (32:37):
You know, even just this conversation about having to make
a decision about having a half a full hysterectomy, Like,
how did you process that? Because that is such a
huge thing for a woman to go through. I mean,
obviously the choice between having cancer and having kis directomy
doesn't give you much of a choice, But I wonder, like,
how was that period for you and in terms of consideration,
(32:58):
what did that look like?
Speaker 2 (32:59):
Yeah? I was in the hospital with one of my
best friends and she's like, are you all right? You
look really green right now? You look like you're going
to be sick. I wasn't sick, but I was just
it was just so much to process all at once.
So I said, what happens if I don't have this operation,
and they said, you'll get sicker, And I wasn't really
feeling sick, like it was just my tummy, and so
(33:21):
you know, I knew that I'd had to have it.
But also there was the consideration about how the skin
would heal. And fortunately I heal really quickly from cuts
and grapes and stuff, so I have no scarring and
it healed really quickly. But I had to make sure
that I was mitigating infection. It was good in that
when I have to go to hospital for a skin issue,
I don't often get prepared for that, so I wasn't
(33:44):
able to take you know, when I go to hospital
for skin I just go and what I'm wearing. I
often don't have the pajamas that I like, I don't
have my cranes. But when I was going for this,
I could prepare, Like I took my own douner, I
took my own pillow, I took a mattress protector so that,
you know, plastic matches wouldn't hurt my skin. So I
got to prepare for that. But you know I never
(34:04):
wanted children, you know, for the last ten years, I'd say,
you know, I've made a decision not to have children,
but I don't like that the chance and the choice
was taken away from me in that way. Like even
though I didn't want to have children, knowing that I
can't at all have children.
Speaker 4 (34:19):
Now feels different.
Speaker 2 (34:21):
Hard, It feels different.
Speaker 1 (34:22):
Yeah, yeah, I guess The thing is is like you
can make that decision voluntarily for yourself, but you always
know that if there is a moment where you might
decide that if you know, if and I know we've
had these conversations loads, but if something changes and you
change your mind, there is the choice there, but that
choice is completely taken.
Speaker 4 (34:40):
Away even changed in mind all the time.
Speaker 3 (34:42):
But this is I guess this has got two extra
layers to it. It's got multiple extra layers to it.
But firstly, they're saying, hey, you don't really have time
to think about it. You have to have this hysterectomy,
but also you might not actually have it, like we
can't be sure until.
Speaker 4 (34:55):
We've taken it out.
Speaker 5 (34:56):
And then secondly, it's like the repercussions of that, which
are things like early menopause, and are the change in
your body.
Speaker 2 (35:03):
So that was what I was really worried about when
when the surgeon talked to me about early menopause, she
said that, you know, there's a lot of risks for that.
There's you know, bone density, there's depression, there's like the
lack of estrogen means that lots of things in my
body will work differently. And so I was starting to
read a bit about menopause because I'm forty three and
you know, lots of my friends were going through it.
(35:24):
There's been a lot more media around it, but then
I just didn't have the time to get clued up
about it. And so fortunately when I was in South Africa,
i'd listened to em Mushiano's podcast and Analysts, which was
really great around ADHD and menopause, and I kind of
joke I was on my way to getting an ADHD diagnosis,
but then I got a cancer diagnosis, so I never
got my ADHD diagnosed derailed, but that was really validating
(35:49):
to know that I've done a little bit of preparation.
But I just didn't have enough time. And so you know,
they talked in that meeting, I reckon that the appointment
went for two hours, and they talked all about you know,
HRT and what I should take. And then they said,
you know, we don't want you on patches because they
might hurt your skin. The only thing that you should
take is gel tablets will be really bad. And they
(36:09):
talked all about the repercussions of like HRT medicine and
I'm like, whoa, There's so much to think about here totally,
And then and then they said I have to have
six weeks off work and I'm like, I've never had
six weeks off work before. What do I do? Like
what about money? I'm part you know, I work part time,
but also I'm a freelancer. And it was so much.
And then they said, you know, when you're recovering, you
can't do anything, like you can't do house you can't
(36:32):
do cooking. And I'm like, well, who's going to do
all this? It was just so much, so much.
Speaker 1 (36:36):
But also I mean, and I'm curious as to whether
when you live with a disability already and you have
to factor that into your every day I mean in
terms of I've heard you speak about it a little
bit before that that you know, having a disability became
a little bit easier when you became self sufficient, you
were able to take care of the things that were
needed to cater to yourself. But then you become slightly
(36:59):
incapacity because you're having to deal with this cancer diagnosis,
or also just the way in which systems within our
healthcare system are created for people who are able body,
we don't have as many variations when it comes to
catering for all different types of disabilities. How were you
further impacted that somebody who may be classified as able
(37:20):
body wouldn't be impacted if they had the same cancer diagnosis.
Speaker 2 (37:23):
Yeah, well, there was literally no information about ichthiosis and
cancer when I greged it like nothing, and there was
no information about ichthiosis and menopause. And I manage a
number of Facebook groups around ichthiosis. And I put in
an anonymous question because I didn't want to stay that
I had cancer yet or you know, I wasn't talking
(37:45):
about it publicly. I guess a bit like pregnancy, where
you know, you hide it for a while. And I
put a post up and I didn't talk about the
context either. I didn't say I might have cancer. This
is why I'm asking. I just said, is there any
information about ichthiosis and menopause, and a woman in Europe
with ichthiosis goes, oh, you'll just have to get on
with it, like we get on with everything else. And
(38:06):
I'm like, how dismiss it? How's helping the situation? It's
not helping, Like yes, And so one of the things
that it really taught me was that I have to
be really open about my condition because there was no
information about it. Like I've trailblaze by putting myself in
the media. I've got to now talk about cancer and
ichthiosis because there's nothing. And so I would have to
(38:29):
connect my hospital, like my dermatologists at the Royal Melbourne
with the women's doctors and the Peter Mack doctors. And
that was great because it was they were all in
the same hospital precinct and we all use the same
system to communicate. So that was fine. But it was
me educating the doctors and nurses around this. And you know,
like after my operation, I was up within like four
(38:51):
hours having a shower because I had to, Like if
I didn't have a shower, I would have been really sour.
So I had to really maintain that. But also like
I got time. That was the thing, like I got
time to take care of my skin because I was
not working, I was not doing anything. But when I
was in chemo, my skin got really really bad, and
it was the worst it's ever been. Like my skin
(39:12):
was falling off in massive chunks, like massive sheets. My
foot literally came off as my footprint, you know. Like
it was so bad and I've never had that level
of pain. But also I didn't have access to the
right pain killers. There was an admin error with them
sending it to my pharmacist. And I've never been in
that level of pain and never been in that level
(39:34):
of mental health despair as well. Like I didn't want
to continue with chemo. I just wanted to, Like I
said to my mum, if I can have five years
of living how I used to, I would take that
more than I would take chemo.
Speaker 1 (39:47):
That's the thing, isn't it. Like chemo is so it
is so savage to people bad to people who who
don't have a skin condition. I mean, but then you
go and you have chemo, and then you're so affected
by it in a different way that's just not been
thought through. Did you go through with the full chemo rounds?
Speaker 2 (40:05):
No? I had four rounds of chemo. Was supposed to
have six, so I had four rounds of chemo just
on my on its own, and then I had radiotherapy
and they were going to do radiotherapy and chemo at
the same time, but because of that, I didn't, and
they also took one of the medicines out. And one
of the things that I've been not saying, I've never
said what stage cancer I've had because I get so
(40:27):
much trolling. I didn't want people calculating how long I've
got to live, and also I know right, and I
never had I never said what type of medicine they
gave me during chemo because I didn't want to put
people off having chemo themselves because it was so Yeah.
Speaker 1 (40:43):
Did you experience trolling through this period?
Speaker 2 (40:47):
I hate to talk about it, but I actually just
talked about it the other day, so that's fine. It's
out there now. But people on a certain website was
saying that I faked having cancer.
Speaker 1 (40:56):
Oh my god, Carly, I'm so sorry that you haderience.
Speaker 4 (41:00):
And Australian website.
Speaker 2 (41:02):
It's the Tattle. Yeah. And actually, since I posted about
it my thread or sorry, I try not to take
ownership of it. The threads about me have gone since
I wrote about it.
Speaker 4 (41:14):
I mean, it's disgusting. We won't get into that now,
but I'm sorry you experienced it.
Speaker 2 (41:17):
Yeah, I bet I did have trolling. Yeah, aside from this,
I experienced a lot of lateral violence in the disability community,
so other disabled people trolling and bullying me, and I
had that during cancer treatment. Yeah.
Speaker 1 (41:29):
But also I think, I mean, this is part of
the conversation that we didn't have in terms of talking
about advocacy for disability. When you're the person who you
first front up and you speak about it, but then
you have to deal with the online commentary. You might
talk about the real life commentary you received and what
it was that you experienced in a shopping center or
how a child reacted or xyz. But then when you're
(41:51):
the person talking about it on the internet, you then
got to deal with all the hundreds or thousands or
whatever amount of people who have an opinion on the
experience that you had in real life.
Speaker 3 (42:00):
But what's the lateral bullying that you just said, Like,
why were other people in your community or other people
with the disability bullying you over this?
Speaker 2 (42:08):
It wasn't so much bullying me over cance. It was
just bullying in general, just for a very long time.
And I think it's around jealousy. I think it's around
the thought that there's not enough opportunity to go around.
I think it's around me or disabled people not doing
activism or addicacy in the same way that they would
want to. When I released my book, you know, I
(42:29):
had people say, oh, but you've got this responsibility. It
shouldn't be called say hello, you're just bringing upon unwanted
questions around.
Speaker 5 (42:36):
I mean nothing, you will be nothing right for everyone.
Speaker 4 (42:39):
We will see that.
Speaker 1 (42:41):
Yeah, And it's also the expectation when you become the
voice for everyone, there's so much pressure to do it perfectly,
and so this, you know, the small moments where maybe
it's not done perfectly, or it's not done perfectly in
the eyes of someone's subjective view, then they have an
opinion on how you did it wrong, rather than collectively
looking at all the things that you've done that have
been incredibly wonderful.
Speaker 2 (43:00):
Yeah, so that that's been hard. But also like I
kind of prioritize things in a different way, Like, you know,
I took time off and I was saying I don't
have time to get involved in this advocacy piece or
I don't, you know, I'm not going to focus on
the trolling. And one of the things that's happened thanks
to cancer, I guess, is that I've got access to
a lot more of her services than I did before.
(43:22):
So I have a psychologist now, and you know, I
do talk to her around about the trolling, but I
don't tend to focus on it as much because I
realized that I've been through that and I'm really strong,
you know, like I've been through cancer, and I'm really strong,
and I know my truth, like I'm not you know,
I wasn't faking it.
Speaker 3 (43:40):
Kylie as someone now that like we're so glad to
hear that you've come out of the other side and
you've beaten it, Like there's.
Speaker 5 (43:46):
I imagine there's no better news.
Speaker 3 (43:47):
What advice can you give to somebody now whose loved
one might be going through the same thing, Like what.
Speaker 4 (43:52):
Really helped you in this time? What supported you the most?
What can they be doing?
Speaker 2 (43:56):
Yeah, I think if you have if you have symptoms
like like I've talked about, you know, the vague symptoms,
definitely get checked. Go and ask if you can have
an optra sound if you can have blood tests for cancer.
I'm not saying this to scare people, but I never
thought that my bowel condition would be that. You know,
I remember messaging a friend with Crohn's disease really confident
that I would be supported because I knew how you know,
(44:19):
the advocacy that she does is so great, and I'm
like that if I have Crone's disease, that would be
fine because I know that other people have had been
through it. I never thought it would have to be cancer,
so go and get things checked. Also in terms of
like caring for someone with cancer, saying something not nothing
like I know, and sorry this doesn't mean I don't
mean to sound really negative here, but so many people
(44:40):
were there for me last year. It was incredible. You know,
people I hadn't met were sending me money through PayPal
and Patreon. But also I remember the people who weren't there.
So say something, you know, ask how someone is. Just
because you don't know what to say, it doesn't mean
you shouldn't say anything. You know, asking how you are,
asking what someone can do is useful. I found things
(45:02):
like meal vouchers really useful because I didn't want to cook.
I couldn't you know, at times I couldn't cook, so
you know, people would get me vouchers for a company
called the Dinner Ladies, which was really useful. They've got
like home staff, food, other things like Uber eats vouchers,
and the Uber Eats vouchers transferred to Uber vouchers as well.
So sometimes when I couldn't drive, I'd need to go
places and you know, that would pay for an Uber So.
Speaker 5 (45:25):
That was really useful and really thoughtful.
Speaker 2 (45:27):
Yeah, laundry vouchers were really great, so you know, places
that I could send my washing too, so I didn't
have to do the washing. And I was, you know,
having treatment and I had surgery during winter, so things
weren't getting as dry as quickly. Having that laundry vouch
was really good. Even just you know, if you don't
have any money to help, just being there, like being
on the other end of a text message sending three
(45:48):
suggestions of what to read and watch and listen to
is really good.
Speaker 3 (45:52):
Yeah, just knowing someone's there if you need them. Carlie,
thank you so much for coming and sharing your story. Honestly,
as a conversation we wanted to have for a really
long time.
Speaker 2 (46:01):
Thank you.
Speaker 1 (46:01):
I appreciate it genuinely, Like I said, thank you for
reaching out, because I really do believe like the only
person that's ever going to advocate for your own health
is yourself.
Speaker 4 (46:10):
Or Carli Carly.
Speaker 2 (46:13):
Yeah. One of the things that's happened to me since
you know, being really public about my story is having
people with your birosists who have been diagnosed with cats
so message me to say my stuff has really helped them.
I had a woman message me and I made it
public a few months ago who read all the symptoms
that I had and had the same symptoms and got
an early diagnosis and her prognosis is really great. So
(46:35):
that's incredible to know that.
Speaker 3 (46:36):
That's so so amazing to even if you know, even
if you're just helping one person, but at the end
of the day, you're helping so many more than one person.
You are, like you said, a trailblazer and a leader
in this space because other people haven't spoken about it.
So I guess like, in a way, congratulations just for
like putting yourself out there and it's not easy and
it's exhausting, and a lot of people don't realize what
(46:57):
comes along with being the face or a trailblazer of
using which is the constant exhaustion and the.
Speaker 5 (47:02):
Trolling and everything that comes along with it.
Speaker 3 (47:04):
You know, we just see someone tell their story, but
we don't realize what you're going through at the same time.
Speaker 1 (47:08):
So like and also on that the fact that you've
told your story, you know, you tell it to us
and we're so grateful for it, but like you've told
it a hundred ye yeah, yeah, exactly, yeah.
Speaker 2 (47:18):
Thank thank you for having me.
Speaker 4 (47:19):
On anyone that wants to know more.
Speaker 3 (47:21):
We're going to link out all of Carl's writings and
website in a show notes, so you can go and
click on that and have a look.
Speaker 5 (47:26):
Thank you so much, Carlie, thank you, thank you so much.
Speaker 2 (47:28):
That was great.
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