Life Uncut - The Lesser Known Side Of Ovarian Cancer - Uncut with Carly Findlay

Episode Date: August 7, 2025

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  You can follow Carly on instagram    You can watch us on Youtube Find us on Instagram Join us on tiktok Or join the Facebook Discussion Group Tell your mum, tell your dad, tell your dog, tell your friend and share the love because WE LOVE LOVE! XxSee omnystudio.com/listener for privacy information.

This episode was recorded on Camaragal land. Hi, guys, and welcome back to another episode of Life Uncut. I'm Laura. I'm Brittany. And I am so excited for today's interview. Now, we are joined by Carly Finlay. She's an award-winning writer, speaker, and an appearance and disability advocate. Carly was born with a rare skin condition called ichthyosis.

Now, 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. Carly 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 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 ovarian cyst and how it had for a very long time gone undiagnosed the pain that I was experiencing and also the mishandling through I guess the system and the waiting times in which it took to get that diagnosis Carly reached out to me in my dms and not only has Carly 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 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 Carly 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 to be able to have this conversation on the pod and for Carly 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 ovarian cancer it can be a very very different outcome. Carly welcome to the show. Hello that was such a nice introduction thank you. Carly we kickstart every single episode with Accidentally unfiltered your most embarrassing story so do you have one you can bring to the table I had a recent one actually I work at Melbourne Fringe Arts Festival and my phone wasn't working

like the the desk 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 hey do you know actually what's so funny like two weeks ago at my wedding my sister we're in a hotel and she's got a little baby Maya and she was trying to boil the jug to sterilize her bottles and it wasn't working and this is a 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 anyway they come down and have a look and they just plug

it in just wasn't even plugged in i i think everyone can relate to this i did the same on the weekend i called appliances online irate because we 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 carly don't worry you're not alone yeah i know that there's so much of the conversation that we're going to have today is around where you are at in your health journey with ovarian 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

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 I mean I would love your opinion on this there's been some changes in the last few years in how kids are raised and the exposure to different things. But of that time, I think it's just something that was so incredibly othering. Yeah, absolutely. So I grew up in a really small town near Albury. The town had about 500 people and my mum and dad are also mixed race. So there was that factor. It was a really religious town. And so when people would talk about me, they would say that I have sinned because my parents are black and white oh my god I know and 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 80s 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 10 they did some genetic testing so a biopsy and they found out that I 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 erythroderma which the form erythroderma means red skin erythro and derma I think is latin the red skin or greek something take that bit out when I was when I was diagnosed with

urethroderma 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 when I got the Neffertons 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 change the symptoms. It was just another word for it. 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 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

yeah sure so i have netherton 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 paraffin oil that's similar to Vaseline 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 than medically challenging where people stare and comment and say rude things and intrusive questions. And is it something that affects only like your face or do you get it on other parts of your body? 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 I don't know 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 and pain when you talk about the fact that it's a rare genetic condition how rare are we talking do you have the stats on that maybe like one in a million 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 with ichthyosis in Australia I'd say or with severe ichthyosis because we're all in touch with you know support groups and online. I can imagine what was your schooling like and what were 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 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 were very exclusionary you know there was those kind of rumors etc 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 Carly's got skin cancer or Carly's been burnt or been sunburned so there 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'll 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 of people say that's all I talk about I'm a Savage Garden fan but having that that level of like fandom and community when I was a teenager I really found myself in that when i was about 14 or 15 when i was probably 15 the school librarian said to me that i should stop looking up savage garden on the internet and they're like we've looked at your search history carly yeah yeah and this is like when the internet first came you know so that's all i was using it for and then she said she said that i should look up ichthyosis 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 90s to upload a photo of course so I didn't see anyone with the condition so I kind of just assumed that I looked like this and they looked like they do but I didn't think that we all look the same and so one of the genetic traits about ichthyosis is that you look more like a person with ichthyosis than you do your sibling or family member that's so interesting yeah so we look very similar we have very similar traits so I was chatting to these people online and and then 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 1999 when there was this show on Channel 9 called Medical Incredible and I remember seeing like people would saying oh this show was on Channel 9 on what Thursday or

whatever and I wrote to Channel 9 because it was in the time that once the TV show had 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 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 gonna let this make me shy away and become a wallflower like I'm gonna 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 yeah I think it was when like in my in my 20s I started to mentor people with chronic illnesses at the hospital and I and I realized that yes I have chronic illness I have all the same things that they do even though it's different diagnosis so lots of time in hospital lots of specialists lots of time off school the social barriers and I'm like yeah okay I identified there and then I started writing more about my condition like when I when we had MySpace and I was writing a lot about that and people people related to it so I wrote you know more and then I just found it easier to love myself and to hate myself and to be myself rather than to change and like a lot of the media is terrible around

ichthyosis there's really bad headlines like snake skin 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 in terms of like when you say really dehumanizing coverage as in that's written by journalists that's so hideous but yet not surprising not surprising and the other thing is I've seen people have 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 ichthyosis unless I've written it myself. 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. Like, I mean, you would see it all the time. And I think it's, 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 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 can 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 you deal with the unrelenting firstly the questions that insensitive and unkind and secondly around the constant education piece yeah it's exhausting and

I mean I've definitely you know we mentioned earlier that I had ovarian cancer I've definitely taken a step back from advocating after that or during that time so I've been 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 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 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 I feel like that the defensiveness comes because like the only other yeah yeah yeah there's truth to it the only other place to go to is acceptance and then accepting responsibility for doing something that you know is shameful I guess absolutely I think something interesting and in your book you released in 2019 say hello 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. And I say this because we've spoken about it 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 yeah I think it's really important to know that the disabled person shouldn't have to educate at all times yeah 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 yeah like it's

exhausting yeah 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 like if they're really rude sometimes I'll tell them that you're they're being really rude yeah like don't point you know yeah don't don't point don't stare and if they're like I've had experiences where they they'll cry or they'll they'll get scared and then 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 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 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 my 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 he's an Olympian. But it was something that I think was incredible for her to see because, you know, she was seeing a man with no legs swimming like faster than you could ever 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 are at in terms of, you know, and I know that 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 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 wait times around anything that's gynecological

are insane. Like the wait times are months and months and months. 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. Which is wild when you think about it. 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. Ovarian cancer

is 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 the first telltale signs for you that something wasn't right? Yeah, I think you say, Laura, it's just such a long period to diagnosis and it's really frustrating. So one of the traits of ichthyosis, particularly methadone syndrome, is digestive symptoms. So for a long time, for probably, I don't know, 20 years, I've had bloating when I've eaten like bread and cake and stuff and I've been tested for celiac and never you know that's never shown up and I've kind of just thought oh maybe it's just this is just how life is you know like

the geneticist has confirmed that digestive issues are part of the condition so I've just kind of put up with it and in early 2024 the digestive issues got worse so I 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 to in the past so I would go to the toilet for a poo and I'm going to talk about poo a lot sorry no that's it's important I've never talked about poo so much in the last year there's no shame we all do it we do um I was going to the toilet for a poo like between four and twelve times a day wow it's so excessive it was yeah and it was just like constant diarrhea and very runny poo 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 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 I have to travel today what what should I do I can't stop going to the toilet and he said take some Imodium have a white food diet you know like mashed potatoes bread and that

did help in a way but you know I was taking Imodium 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 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 you know the math ain't math in I don't understand like maybe I got a hernia moving house like lifting a box yeah so I was about to go overseas I was 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 was only two and a half centimetres. So they didn't worry about it. And my dermatologists are all connected with the other specialists and everything. And they said to me, we'll connect you with the gastroenterology 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 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 a stool sample and

I remember they said to me this is going to be $70 or something but if if you do have something we give you money you won't pay for it like yeah yeah you won't pay for it anyway so um had this test and they said no nothing's coming up you've got no bowel issues i'm like well like clearly i do so i went overseas i went over to south africa with my mom and it was incredible it was a writing research trip and um i so i was researching my family and the apartheid the racial segregation law in south africa 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 um products the yeah and so i went to the event

hydrotherapy center and it was incredible 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 hydrotherapy so i would would go in their spa and i'd 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 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 weigh myself or I

didn't then so we're away seven and a half weeks in total and on my way back from France we had three 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 um that needed extra leg room because of my skin and the seat was really uncomfortable and really small 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 when I breathed and my I went to the bathroom to have a shower

that we went to the bathroom in the airport to 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 toilet couldn't bend down to put my socks on I rang my mum and I said hey I can't I can't put my socks on can you come I'm really unwell and she's like I can't come someone will put drugs in my bag 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 to do I don't know if I'm going to come back to Australia I don't know whether I feel well enough. When you say you couldn't move Carly was it like were you just bloated was it pain like was there blood in your stool? 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 and bloated and also I couldn't really breathe properly because I guess there was a lot of fluid taking you know 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 be fine when I got there I flew Qantas which was great because the rest of the time I didn't fly Qantas and it was terrible but flying Qantas it just felt like home they were really great

they were like oh are you okay you didn't book with the 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 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 mum 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 past 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 at nine I should be fine. Anyway, I rang the doctor at nine and I couldn't get him until like two. My doctor who

I'd been seeing before had gone on to mat 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. Went to the doctor at two. I'd never seen him before. He said, you have to go to hospital right now. You have sepsis in your stomach. I'm 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 parking fine but then I got out of it because I said that my diagnosis 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 30 hours 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 a surgery yeah and so uh I got into the emergency ward and I had a bed and then the nurse was like oh we're just gonna do some tests for cancer and I said oh and I'm like, what kind of cancer? And she says, oh, just, yeah, numbers. There's some numbers. So they didn't really tell me what the cancer was. Anyway, so then I had to have a CT scan at

midnight. I 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 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 ovarian cancer but it's not confirmed yet don't get too ahead of yourself and I mentioned fandom before I mentioned um Savage Garden and I was like checking my dms and I had replied to something that Darren Hayes had put on and then like he was literally the first person I told because yeah I said um hi I think I might have cancer

uh you know we 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 you're like sorry I told Darren before you does your husband know this now yeah yeah he's okay with it he knows where he sits in the hierarchy he does so I was transferred to the Royal Women's the Royal Women's attached to the Royal Melbourne and I was transferred there and they let me sleep until like 10 my message Adam before and I said please don't go to work today I need you know I need you to come in so they did more tests when I was in the women's and it 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 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 cancer was to have a hysterectomy that is insane I know right so I would have a full or partial hysterectomy 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 do they tell you why they can't do a biopsy like they do or with every other type of cancer 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 acetes 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 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 12 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 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 2.5 centimeter hernia or whatever. And then it was 11 centimeters when i went to hospital the first time this is the thing ovarian cancer and i mean the 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 when we go through monthly on our cycles or if you have endometrian pain like

there's so many comparative uh symptoms that are mixed up with it and then on top of that the process of once 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 even don't know if you listen to it 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 put up to so she had like a cyst burst in her kitchen she passed out from the pain and then just got up when she recovered and just went to bed she was like oh i guess that's just something that women go through like crazy the the level that we put up with and how

much we ignore like a man would never yeah no no not 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 mom 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 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 and I was getting like spotting

between periods and I was getting the you know there wasn't weight gain because weight gain can be a part of ovarian 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 move up you know even just this conversation about having to make a decision about having a half or full hysterectomy like how did you process that because that is is such a huge thing for a woman to go through I mean obviously the choice between having cancer and having hysterectomy doesn't give you much of a choice but I wonder like how was that period for you? And in terms of consideration, what did that look like?

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, you know, I knew that I'd had to have it, but also there was the consideration about how the skin would heal and unfortunately I heal really quickly from cuts and grazes and stuff so I have no scarring and 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 able to take you know when I when I go to hospital for skin I just go in what I'm wearing I often don't have the pajamas that I like I don't have my creams but when I was going for this I could prepare like I took my own doona I took my own pillow I took a mattress protector so that you know plastic mattress wouldn't hurt my skin so I got to prepare for that but you know I I never wanted children you know for the last 10 years I'd say I you know I 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 yeah want to have children knowing that I can't at all have children now it's feels different hard it feels different

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 you 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 away people change their mind all the time but this is I guess this has got two extra layers to it or 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 we've taken it out and then secondly it's like the repercussions of that which are things like

early menopause and every other change in your body 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 43 and you know lots of my friends were going through it 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 M Mushiano's podcast and analyst 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 diagnosis but that was really validating to know 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 his gel tablets will be really bad and they talked all about the repercussions of like HRT medicine and I'm like whoa there's so much to think about here 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 housework you can't do cooking and I'm like well who's gonna do all this it was just so much so much. 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 everyday, I mean, in terms of, I've heard you speak about 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 incapacitated 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-bodied we don't have as many variations when it comes to like catering for all different types of disabilities how were you further impacted that somebody who may be classified as able-bodied wouldn't be impacted if they had the same cancer diagnosis yeah well there was literally no information about ichthyosis and cancer when I googled it like nothing and there was no information about ichthyosis and menopause and I manage a number of Facebook groups around ichthyosis and I put in like an anonymous question because I didn't want to say that I had cancer yet or you know I wasn't talking about it publicly I guess a bit like a pregnancy where you 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 ichthyosis and menopause and a woman in europe with ichthyosis goes oh you'll just have to get on with it like we get on with everything else and i'm like how dismissive how like 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 trailblazed by putting myself in the media I've got to now talk about cancer and ichthyosis because there's nothing and so I would have to connect my hospital like my dermatologist at the Royal

Melbourne with the women's doctors and the Peter Mac doctors and that was great because it was they're all in the same hospital precinct and they 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 hours having a shower because I had to like if I didn't have a shower I would have been really sore so I had to really maintain that but also like I got time that was the other 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 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 painkillers 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 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 that's the thing isn't it like chemo is so it is so savage to people 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 being thought through did you go through

with the full chemo rounds no I had four rounds of chemo I 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 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 did you experience trolling through this period um 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 oh my god Carly I'm so sorry that you have to experience that Australian website it's the tattle yeah and um actually since I posted about it my thread that or sorry, I try not to take ownership of it. The threads about me have gone since I wrote about it. It's disgusting. We won't get into that now, but I'm sorry you experienced that. Yeah, but 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. But also I think, I mean, and 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 and what it was that you experienced in a shopping center or how a child reacted or

xyz but then when you're 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 on real life but what's the lateral bullying that you just said like why were other people in your community or other people with a disability bullying you over this it wasn't so much bullying me over cancer it was just bullying in general it's gone on 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 advocacy in the same way that they would want to when I released my book you know I 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 I mean nothing you ever do will be nothing right for everyone like we will see that 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 yeah so that that's been hard but also like I kind of prioritize things in a different way like you know I 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 oh 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 services than I did before so I have a psychologist now and um you know I do talk to her around about the trolling but I don't tend to focus on it as much because I've 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 and I know my truth like I'm not you know I wasn't faking it. Kylie as someone now that like we're so glad to hear you say you've come out the other side and you've beaten it like this I imagine there's no better news what advice can you give to somebody now whose loved one might be

going through the same thing like what really helped during this time what supported you the most what can they be doing 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 ultrasound 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 the advocacy that she does is so great and I'm like that if I have Crohn'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 and sorry this doesn't mean I don't mean to sound really negative here but so many people 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 don't you know ask how someone is just because you don't know what to say doesn't mean you shouldn't say anything you know asking how you are asking what someone can do is useful I found things 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 homestyle food other things like uber eats vouchers and the uber eats vouchers transfer 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 that was really useful and really thoughtful yeah laundry vouchers were really great so you know places that i could send my washing to 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 voucher 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 through suggestions of what to read and watch and listen

to is really good yeah just knowing knowing someone's there if you need them Carly thank you so much for coming and sharing your story honestly it's a conversation we've wanted to for a really long time thank you I appreciate it genuinely like I said thank you for reaching out because I I really do believe like the only person that's ever going to advocate for your own health is yourself or Carly yeah one of the things that's happened to me since you know being really public about my story is having people with ichthyosis who have been diagnosed with cancer 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 of the symptoms that I had and had the same symptoms

and got an early diagnosis and her prognosis is really great so that's incredible to know that That's so, so amazing. Even if you, 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 comes along with being the face or a trailblazer for something, which is the constant exhaustion and the trolling and everything that comes along with it. You know, we just see someone tell their story, but we don't realise what you're going through at the same time. 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. You've told it a hundred times.

Yeah, yeah, yeah, exactly. Yeah, thank you for having me on. Anyone that wants to know more, we're going to link all of Carly's writings and website in the show notes so you can go and click on that and have a look. Thank you so much, Carly. Thank you. Thank you so much.

That was great. Thank you.