Carly Findlay's Blog, page 2

What I owe people

As my one year anniversary of surgery and cancer diagnosis comes closer, I’ve been reflecting on how much of myself I’ve given.

Writing has been a way to process it all, and also to educate and raise awareness – particularly because when I was told I might have cancer, there was no info on cancer and Ichthyosis available.

I told people so much about my cancer – my symptoms, diagnosis, surgery outcome, menopause and treatment I was having. I talked about how cancer treatment affected my physical and mental health, and the interaction between treatment and Ichthyosis (even contributing to an academic paper about this). I talked about the financial challenges and barriers to accessing support. I advocated for research funding and raised awareness throughout Frocktober. When the doctor declared I was cancer free, I rejoiced and provided a public update. I continue to talk about how I am still processing all that happened to me this last year, and my progress rebuilding health and strength.

I gave a lot.

But I kept things to myself.

I didn’t talk about what stage cancer I had.

I also didn’t mention the types of drugs I was on for chemo.

And I talked about the weight I’ve lost, but never the number.

These were very deliberate decisions.

I didn’t mention the stage cancer as I didn’t want people speculating on how much time I might have left in this world. The ongoing targeted trolling I endure takes its toll, and I knew that my cancer would be something these monsters would be gleeful about. I didn’t want anyone making assumptions about my prognosis.

I talked about some of the trolling I get on the weekend. Some people were posting about why I hadn’t provided an update about my treatment – when I didn’t even know myself. Gross.

Chemo was really hard on me. I am aware of my influence as an activist and advocate. I didn’t want to put anyone off doing chemo because I’ve had a bad experience. Everyone copes with treatment differently.

And I promote body positivity, yet I struggled with my own self image. Well meaning people commented on my body.

I’m a public figure. I share a lot. But there are things that I keep guarded. I don’t owe the world my entire self though my advocacy.

Images: Carly, a woman with red skin and short dark curly hair, wearing a burgundy velvet blazer over a teal floral top and wide legged navy pants, standing in a street and a doorway, smiling, holding a handbag.

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How to beat jet lag: go to hospital and be told you probably have cancer

Feeling pretty proud of myself to have made it through a whole year.

One of the hardest times of my life – definitely the most uncertain, the most painful and the lowest my mental health has been.

A year ago today, I arrived home from France and South Africa. I got home at 7.00 am, showered and went to bed. I planned on logging onto work, to beat jetlag. But my stomach was too sore, and I had trouble breathing comfortably.

So I texted my manager and called the GP, making a booking for 2.00 pm. I opened my mail, had a little nap. I didn’t eat.

The GP I saw was new to me. My regular one had gone on maternity leave. He said my stomach probably had sepsis, and to go to the hospital immediately. He wrote a letter to give to Emergency staff.

Adam came to pick me up from the GP and take me to hospital. Hester and Ben collected my carkey and got my car.

And I waited, and waited. I ate half a sandwich. I was told off for doing so, in case they had to operate.

I had a blood test and went back to the waiting room.

Finally at 9.00 pm I got a bed in Emergency. I was quizzed a lot about my trip overseas – did I go on a safari? (yes), did I swim? (lol no!).

I had a second blood test. A nurse said they were testing me for cancer. Some numbers, CA125. I didn’t know what they meant. I now know – it’s the indicator for Ovarian Cancer.

I had a CT scan after midnight. Adam went home, I tried to sleep.

At 4.00 am, a surgeon from The Women’s came to see me, asking me about my family cancer history. He asked about my weight – I said I didn’t weigh myself but showed him some photos, six months apart. He said based on all my symptoms (weight loss, lack of appetite, feeling full Quincy, increased bowel habits) it’s likely I have Ovarian Cancer, but they still need to do more tests.

I scrolled through my phone. I saw Darren Hayes had replied to a story I shared. He was the first person I told, that I might have cancer.

I was finally transferred to a bed in The Women’s at 5.00am. I messaged Adam to say please don’t go to work, I needed to talk to him.

The nurses let me sleep til about 10.00 am. I had a private room as I had recently been in Africa. Lucky.

I beat jetlag by being in the hospital and worrying that I probably had cancer.

Image: my hand bandaged

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Pain at the airport

A year ago tonight, I was flying back to Melbourne after feeling unwell in Singapore airport.

My stomach was so swollen and painful. It hurt to breathe. I couldn’t walk to the airline departure gate. I pretended I was fine to get home to Melbourne.

I thought I had worsened my reported hernia* with carrying my heavy case. I thought I’d worn my mask too long on the plane. I thought I’d slept badly in an uncomfortable plane seat.

I never thought it would be cancer.

i suspect what was reported as a 2 cm hernia on the ultrasound was the tumour, which grew to 25 cm.

Thanks to Mum and Adele for all their help at the airport. Mum worried someone would put drugs in our bags when she came to help me in the airport shower! No one did. But I surely got access to good pain meds a month later!

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She didn’t know it then

She didn’t know it then, but in two days, her life would be changed forever.

This selfie was taken one year ago today.

About to leave France – taking three flights back to Australia. Montpelier, Paris, Singapore.

Looking radiant, feeling relaxed. So happy, filled with memories of seven and a half weeks of travel.

She had no idea what was ahead.

She’d arrive home, go to the doctor who will send her to Emergency. And then she would be told she probably has cancer.

Image: a selfie of Carly, a woman with red skin and dark curly hair, wearing a floral top and pink elephant brooch. She’s outside, with trees behind her, she is smiling. The photo is time stamped at 12.37 25 May 2024.

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A fun photoshoot to mark the end of Face Equality Week

It’s the last day of Face Equality Week. From having nothing planned, I certainly did write some posts!

There’s a line in Savage Garden’s Affirmation that says “I believe that beauty magazines promote low self esteem.” It resonates. All those magazines I read when I was younger, I never saw the representation I needed – people like me.

And now?

I am a part of that representation I so desperately wanted. (I’ll be on TV later this week, and an article I wrote will be published too.)

I want my spaces on the internet to be the antidote to that Savage Garden quote. I want to show diversity and realness. I want to show my face, unhidden, unfiltered and unchanged.

I want to show that people with facial differences and skin conditions (and without) can experience joy, and can feel beautiful. I want people with facial differences and skin conditions to see me and know that it’s ok for them to be visible, that they should be seen, and they should not feel ashamed. I also want them to know they don’t have to accept being excluded, erased, mistreated and discriminated against because of their appearance.

This photoshoot was so fun to do with Hester last week. She said she wanted to paint my face to accentuate what was already beautiful. I let her do her thing – she’s very good. She painted little strawberries and flowers on my face. I put on this dress which I got for $30 from Facebook Marketplace – it’s a bit Zimmerman.

Face Equality Week is once a year, but it’s every week (day) for me. I’ll continue to celebrate, and also fight for Face Equality.

Thank you for your lovely likes, comments and shares. They’re appreciated.

More info: FaceEqualityInternational.org and ChangingFaces.org.uk

Ps: the next line in that Savage Garden song is “I believe I’m loved when I’m completely by myself, alone”.

Images: Carly, a woman with red skin and short dark curly hair. She’s wearing a cream floral dress with purple and orange flowers on it. One side of her face is painted with red strawberries, white and yellow flowers and green leaves. All photos are close up apart from the second last, which is full length. The last photo is of Hester and I – her hands are on my shoulder.

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Face Equality Week – calling for respect

CW: ableism, death threats, suicide. Lifeline: 131114.

This Face Equality Week, I call for people with facial differences to be treated with equality, dignity, respect and safety.

I don’t want people with facial difference to be discriminated against, excluded, ridiculed, forced to reveal medical information or relive traumatic events to satisfy strangers’ curiosity, or endure emotional or physical violence because of fear, pity and prejudice around facial difference.

I have a facial difference caused by a skin condition called Ichthyosis, and through my life I’ve: :

been asked to leave a store

been refused taxi rides

been laughed at and ridiculed

been photographed by strangers

been stared at

encountered children and adults who a physically react because they’re scared

missed out on career progression because of implicit and explicit bias

been asked curious and intrusive questions

had my photo misused on Reddit and by the media

endured countless instances of online abuse including death threats and statements like I should be dead

been seated away from other diners at restaurants

been ignored in stores

been treated as though I’m contagious

read, seen and watched media and art that disrespects people with facial differences and skin conditions

had people tell me they’d kill themselves if they looked like me

been told it’s great someone like me gets out of the house, and isn’t locked away

seen people with facial differences and skin conditions physically and mentally tormented, feeling unsafe where they live.

Enough of this disrespect, discrimination and othering. I’d also like to see hate crime and hate speech laws extend to people with facial differences – protecting us and punishing perpetrators – with fines and community service.

I’m still here. We’re still here. We exist, and we deserve to be seen. I’ve tagged some amazing people with facial differences for you to follow on Instagram.

More information: @faceequalityint @changingfacesuk

Image: a selfie of Carly, a woman with a red face and short dark curly hair, wearing a pink cardigan over a dress, & a blue flower brooch & red flower brooch. She’s smiling.

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Face Equality in the Arts

It’s Face Equality Week and the theme is My Face is a Masterpiece.

As an artist and arts worker with a facial difference, I want to talk about face equality in the arts. The arts is broad – including performance art, visual art, music, writing, circus, dance and even media like film, TV, radio, podcasts and vodcasts and news reporting. 

Facial difference (and disability) is often appropriated, mocked and mimicked in the arts. Characters with facial differences are played by people without facial differences. Facial difference is often a tragic or scary storyline, designed to garner pity or fear from the audience.  These tropes are harmful as they reinforce negative stereotypes about people with facial differences – that we are to be feared, ridiculed, pitied, lead tragic lives and are less than; and suggests our appearance can be emulated with makeup, a mask or a costume. Unlike makeup, mask or a costume, our facial differences cannot be taken off at the end of a performances, and we endure daily exclusion, questioning, ridicule and discrimination – something  that people without facial differences may not endure because of their appearance.  And artists with facial differences miss out on opportunities while people without facial differences co-opt out stories. 

Here are some considerations to make when thinking about facial differences and the arts, especially if you do not have a facial difference.

Do you really need to wear a costume or makeup that depicts disfigurement or facial difference in your art? 

Is the makeup, costume or mask you’re wearing designed to scare or shock or disgust people?

Are you using a character with facial difference  to represent a weakness?

Have you got authentic casting – that is a person with a facial difference playing a person with a facial difference (like Adam Pearson has been cast as Elephant Man)?

Is there a storyline where someone who looks different is laughed at or makes people gasp?

Is facial difference a negative trope in your storyline?

Is the person with the facial difference having to educate, or can their facial difference be incidental?

Are you including a content warning about someone’s facial difference, or are you  

including a content warning about ableism related to the facial difference?

If you are creating art that includes a narrative about facial difference, get lived experience consultants and pay them. 

More information:

FaceEqualityInternational.org 

ChangingFaces.org.uk

Carlyfindlay.com.au

 

Image: Carly, a woman with a red face and short dark curly hair, wearing a colourful jelly print dress and an ice cream brooch pinned to it. Black text on a white background in the top right reads “Face Equality in the Arts @CarlyFindlay”

 

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Face Equality Week 2025

It’s Face Equality Week from 12 – 19 May.

The theme, for the second year in a row, is “My Face is a Masterpiece, My Body is a Masterpiece”.

From Face Equality International:

“The stories of the facial and visible difference community are often portrayed with pity and prejudice. When this is a vibrant and diverse community that should be seen, heard, and celebrated. Especially in art form.

Society portrays a narrow perception of beauty and unattainable standards which perpetuate insecurities. These ‘ideals’ aren’t representative of the wonderfully diverse world we live in, that’s why we’re creating space to celebrate all masterpieces.

Help to make face equality a reality by using your creativity as a tool for social change. Let’s use art to celebrate visible and facial differences this face equality week.”

Usually I’d have lots of content planned, but not this year. This post was not planned. I might do some more posts through the week – I’m not sure. But I will share posts by the incredible people with facial and bodily differences, as always.

Right now, I feel pretty confident with my face – and I am getting there with my confidence with my body, which has changed a lot due to cancer. Wearing beautiful clothes, being happy and surrounding myself with good people makes me feel confident. When I see photos of myself, I see beauty.

My confidence shakes when I encounter rudeness, intrusion and discrimination based on my appearance. It does seem less and less now – I get complimented on my clothes and recognised as a public figure much more than asked if I’m sunburnt these days. But when it happens – BANG! Interrupted! I was just going about my (often great) day. And then I’m reminded that some people are afraid of my face; or don’t feel I deserve the same respect as people with beauty privilege.

And so I call for more authentic representation of facial difference in the media so my face, and all people with facial differences, is more accepted and less stigmatised.

More info: FaceEqualityInternational.org

Images: 1. Carly, a woman with red skin and short dark curly hair, wearing a navy, blue, green and white wrap dress over a navy top, dark leggings and black boots. She’s standing near a white wall smiling. 2. A selfie of Carly, the dress has two brooches on it – a penguin with a brown furry hood, the penguin is holding a sardine. The other brooch is a blue tin of sparkly silver sardines.

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World Ovarian Cancer Day 2025

Today 8 May is World Ovarian Cancer Day. Here are some thoughts. 

It’s almost a year since I was diagnosed with Ovarian and Endometrial Cancer. Seven months after surgery, diagnosis and treatment (chemotherapy and radiotherapy), I was declared cancer free. It all happened so quick, my friend joked that I was efficient in kicking cancer out of my body. 

On 8 May 2024, I had no idea I had cancer growing inside of me. I had so many symptoms (see below) but I thought they were bowel related. I was vaguely aware of the face Ovarian Cancer has a low survival rate. It all changed for me on 28 May 2024, when I was in Emergency at the hospital and a gynaecological surgeon  came to tell me I may have Ovarian Cancer. A month later, I had a hysterectomy, the tumours were removed and I was diagnosed. 

I am still processing having had cancer – now I’m not in the thick of it. I have to be kinder to myself when I get frustrated about not being able to live as fast as I used to.

I’m used to my day being interrupted by people asking me what happened to my face. Now it’s interrupted by stats about survival rates of ovarian cancer – social media posts, ads on the radio, posters in the chemist. Reminders are everywhere. 

The treatment made me much sicker than the cancer did. 

The waiting is the hardest bit. Waiting for test results. Waiting for treatment. Waiting for a successful outcome. 

Being told I’m cancer free makes me feel like the biggest imposter ever. More so than when I was a new writer. Am I really cancer free? When will it come back? I’m hyper vigilant – taking note of symptoms and also my diet. 

Peer support is amazing – through cancer yoga I’ve made a good friend. We meet every Monday. She just gets it. 

When I was younger I joked to my older managers who were going through menopause that I can’t wait for a hot flush, because I’m always cold. Now I have had them, thanks for early menopause, 

I have learnt to love and recognise my new body. I am taking much better care of it now – eating very well and exercising regularly. 

The support around Ovarian Cancer has been amazing – from The Women’s and Peter Mac to Ovarian Cancer Australia Teal Program – I’m so grateful. 

If I could give any advice to women and gender diverse people, I’d encourage you to listen to your body. Symptoms are vague, and Ovarian Cancer is often not detected early. Symptoms include weightloss, feeling full quickly, a loss of appetite, changes in toilet habits (frequent wee and/poo), pain during intercourse, changes to periods. More information is at OvarianCancerAustralia.net.au.

The way my family and friends and colleagues have rallied for me has been wonderful. I experienced so much joy even during the difficult times. 

I will continue to talk about how cancer and cancer treatment impacts ichthyosis – as there’s not enough information out there. Cancer doesn’t exist in isolation, and can’t be treated that way.

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Neuropathy post chemotherapy = Carpal Tunnel Syndrome

An update on my neuropathy:

Neuropathy in my hands has continued since November, post chemotherapy. It’s especially painful at night when I get constant pins and needles – even with meds which have improved it significantly.

I had some tests done by a Neurophysician at the RMH last week. They were little shocks on my hands and wrists – feeling like an electric shock from the trampoline. As I left, she quickly told me it’s likely I have Carpal Tunnel Syndrome, which can be common, related to nerve damage from chemotherapy.

There’s a graduated approach to treatment – for now I am on meds and I have hand splints (they’re much like my skating wrist guards – pink too!). Steroid injections and surgery are a long way off.

I had a great chat with my GP yesterday. The Neurophysician‘s tests confirmed I have early stage, mild carpal tunnel syndrome, as a side effect of chemotherapy.

I bumped into a friend in the waiting room at the RMH – she told me the tests would be “straightforward but uncomfortable” (true!), and the Neurophysician and I had a great chat as the tests were quite long.

Lots of people I know have told me about their Carpal Tunnel and neuropathy – after chemo and during pregnancy. It’s a large club, fortunately relief seems possible.

Cancer, hey?! Every day there’s something new and unexpected! At least I no longer get my period.

Image: navy and orange signs at the RMH. They read “Clinical Neurophysiology
EEG, EMG, Evoked Potentials, Vestibular Studies”
And
“Neuroscience Clinical Trials
MELBOURNE BRAIN CENTRE”. Green cabinets are on the wall next to the signs.

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