Carly Findlay's Blog, page 4

Please don’t ask me to work for free – the 2025 edition

Your annual reminder:

Please don’t ask me to work for free.

It’s 13 February and I’ve had several requests to work for free already. It’s incredibly offensive to ask disabled women of colour to perform free labour. (I’m not just talking about me here.)

I value my knowledge, skills, education, lived experience and my community – so I charge money for my work. I also have rent and bills to pay, my medication expenses are high, and I really enjoy fashion, travel, art and food. Exposure doesn’t put food on the table or allow me to buy fabulous dresses like this one (which I bought from Depop).

Work includes writing, speaking, creating social media content, training, editing, educating, podcasts where the company behind the podcast makes money, consulting on best practice for access or diversity content in books, and even answering questions like “tell me how to speak to my children about people with facial differences”, or “give me a list of books by disabled authors”.
It’s all work.

I have created a wealth of FREE resources – here on social media, on my blog (CarlyFindlay.com.au) and also on lots of podcasts (like KICPod, Shameless, It’s A Lot, Wilosophy, and ABC Conversations, in Articles (like ABC, Marie Claire, CNN) and on TV (You Can’t Ask That, The Cook Up, The Project). I’ve published two books (Say Hello and Growing Up Disabled in Australia) which you can borrow from the library in Australia, or buy for around $30 each.

I am looking to expand my paid work opportunities now. Last year, I was recovering from surgery and cancer – and my workload and income reduced significantly. It was hard. I’m re-emerging.

You can book me to work by emailing me – CarlyFindlay8@gmail.com. And if you have benefited from the free content I’ve created, you can buy me a drink at PayPal.me/CarlyFindlay. Thank you.

Image: a photo of Carly, a woman with a red face and short dark curly hair, wearing a long purple dress against a grey wall. Next to her is text “please don’t ask me to work for free” and @carlyfindlay.

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Mentally wobbly

I’ve been feeling wobbly these last few days. Mentally wobbly – my body feels much stronger and more flexible thanks to doing half frog and happy baby poses at yoga on Monday!

I have felt worried about my cancer returning, because there’s such a high likelihood of recurrence with the type I had. Being told I’m cancer free feels like the worst case of imposter syndrome I’ve ever had – and I’m a writer! (I’m writing a longer piece on this.) It’s Ovarian Cancer Awareness Month, and there’s lots of statistics in the media and online. It’s hard to forget the reality. I’ll be ok. I think I now have more brain capacity to process all that’s happened in the last year, now that treatment has stopped.

I’m also shaken and saddened by death of a friend who had ichthyosis reminded me of how fragile our skin is, and how short life is. She was a few years younger than me, and we looked like we were related. Cousins, maybe. After not hearing from her for a while, I messaged a mutual friend who told me she had died late last year. I’m so glad we spent time together – when we each visited one another’s home cities in 2014 and 2018. She never got to cuddle a koala like she always dreamed of doing.

I know I’ll have wobbly days. I’ve spoken to my oncologist and counsellor about this – they both say it’s natural for me to be scared. It’s not overpowering me yet, and I have so many glimmers in my days.

Image: a selfie of Carly, a woman with red skin and short dark curly hair, wearing a lilac dress and a heart pendant, and a purple owl brooch.

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More on menopause – research, wrinkles and jump scares

Menopause discussion part two:

My last post was about menopause – and I’ve got a little more to say.

I am a geriatric millennial and it seems everyone in my millennial/Gen X my friendship groups are talking about menopause. Mostly perimenopause.

Before my hysterectomy, I had not researched menopause much because I thought I had time. At least eight more years, if I went by my Mum’s experience. And to be fair, the only time she and her friends discussed menopause was when it was opening the windows and turning the aircon cooler. I feel lucky it’s discussed (and treated) much more publicly now.

I have bought a few menopause books, but none are in audiobook format, which I prefer. I had too much overwhelm and brainfog immediately after surgery to read, and even now, I’m struggling.

The weirdest symptom I have had, that may be related to menopause, is jump scares. I’ve asked others who have had cancer and reached early menopause, and also who don’t have cancer but are going through perimenopause if they get this too, and some said they did.

Ever since my hysterectomy in June, I feel physical jump scares. I feel a physical fright in my body – mostly in my upper body, but sometimes it feels like when you drive down a steep hill. I get minor heat palpitations, and an upper body tingle.

It happens when I’m driving and a car gets close, or if I misstep, or whenever I’m surprised by something. It feels far more frequent and pronounced than before I was operated on and diagnosed.

I wonder if this is due to a lack of oestrogen, or could it be the cumulative (mildly) traumatic effect of the surgery, cancer, cancer treatments and lack of oestrogen ?

Does it happen to you too?

Image: Carly, a woman with red skin, wearing a floral scarf on her head, a cream floral shirt and bright green pants, a navy, purple and green floral jacket and gold shoes.

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Hair growth and menopause update

Hair growth and menopause update!

I looked in the mirror today and marvelled at how my hair is growing – happy with the curls. It’s always been on the wavier side of curly, but now, it’s creeping into Afro curly, and I love it. I have South African heritage, and I’ve admired my Mum’s Afro all my life. And now the curls are short and tighter than before. I am excited to see how the curls form when it’s a little longer! I rarely wash my hair now – and it has not harmed my hair or my scalp. The other day I washed and conditioned it, and the curls have become more defined. It’s quite glossy up close. My scalp still gets scaly, and the skin flakes are more noticeable in my hair now, but it’s not unmanageable, and I don’t lose hair when I comb my scalp.

Onto menopause – which I haven’t really written about since I had surgery in June. (I had a full hysterectomy due to ovarian and endometrial cancers.)

For many months, I didn’t know what was menopause, cancer, chemo or radiotherapy. My body was making huge readjustments.
I am still unsure if I’ve skipped perimenopause totally and I’m now in menopause so won’t get any peri symptoms. I will ask a specialist at The Menopause Clinic.

I am fairly certain I can’t take HRT as my cancer types thrives on hormones. I will ask the gynaecologist about an update now I have more details on the cancers’ diagnosis and genetic makeup. .

During the first round of chemo, when I lost my hair, I’d get night sweats on my head and legs, which felt odd as my sweat glands don’t work properly due to Ichthyosis. And I would shiver a lot – called rigors. It was hard to know if this was chemo or menopause – I think chemo, as they have stopped now.

But I surprisingly run hotter now, which again feels strange as I find it so hard to regulate my temperature. For my whole life, I am almost always cold – even on 30+ degree days. But now, I have the fan or aircon on a lot.

I love not having periods. I said to mum in May, I am looking forward to my period ending in the coming years. And next minute (month) it did! Dreams do come true, as Gabrielle sang! I do miss my libido, though.

Image: a selfie of Carly with short curly hair, smiling.

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Some thoughts on World Cancer Day

Today is World Cancer Day.

I’m thinking about how it was around this time last year that I started to get symptoms – just after a stressful house move. I went to the doctor and got tests for bowel conditions – but nothing alarming came up in the results.

I noticed a hard lump on the lower right part of my stomach. I was told I have a hernia. How did I get a hernia, I wondered? Maybe from moving house. They told me the hernia was nothing to worry about – I was cleared to travel. I now think that hernia was the tumour – because no one has picked up the hernia since I had surgery.

I travelled overseas for seven and a half weeks – it was amazing. But I wasn’t enjoying my food as I am used to. I still lament the meals I wasn’t able to finish!

Going to the toilet with diarrhoea between 4-12 times a day, feeling full quickly and losing weight became my norm. I remember thinking, as I ran to the toilet in the hotel in France, “this is just how life is now”. It’s funny how we get used to our bodies not behaving as they should.

That’s the thing about Ovarian Cancer – the symptoms are vague and often unrelated to the ovaries.

On my way back to Australia, at the Singapore airport lounge, I felt really unwell. Bloated, poo and a lot of pain in my tummy. It was hard to breathe. I pretended I was ok so I could get home.

And the day I arrived home in Melbourne, I went to the GP, who sent me to hospital with suspected sepsis. I had bloods. A CT scan. I relayed my symptoms.

At 4.00 am, a gynae-surgeon came to see me in ED, asking if I had a history of cancer in my family?

And my world changed from there. Everything became urgent – to help me become cancer free.

I am now cancer free.

These photos are from June to December: the day of surgery and during chemotherapy and radiotherapy. They show how hard it was – there’s a photo of how sore my skin was during the first chemo.
I’ve not shared that publicly before – I only sent it to my doctors and Centrelink to show how severe my ichthyosis became during treatment.

The pics also show how I experienced joy – thanks to the support of my family, friends, colleagues, medical teams and strangers. Thank you.

Images: a selection of images from when Carly had surgery and then treatment for cancersome were in the hospital, many are out in pubs and concert halls and galleries and with friends.

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More thoughts on World Cancer Day

Oh, I had set out to write something completely different. What I meant to say was:

I have spent a long time thinking about the “look” of cancer. Not surprising given I’m an appearance activist.

I feel really lucky that I wasn’t sad or self conscious when I lost my hair. I had my whole life of looking different thanks to a facial difference caused by a skin condition to prepare me for baldness. I loved my bald head. And I love how my hair is growing back now.

The way people with cancer are portrayed in movies and on TV – even present day – is quite different to how I saw it. Most people I saw at the hospital didn’t look as though they had cancer. And I’m aware of how naive that sounds, given I’m also a disability advocate, fighting for disabled people to be seen – visible or invisible disability. What I mean is, the experience and presentation cancer and its treatments seem so unique to everyone. Not everyone undergoing loses their hair. I didn’t have many of the symptoms I was warned about, but my peers did. I have friends who have become cancer free following chemotherapy and/or radiotherapy, and I have friends who will have cancer forever.

I don’t know if I am articulating that well. But someone said to me when I was going through chemo “you don’t look sick” – which is true, but also not the compliment they thought they were giving.

Cancer, like many disability and chronic illness diagnoses, doesn’t have a specific look. It’s unique to everyone – which is the theme of World Cancer Day, today. United in uniqueness.

Images: 1. Carly with no hair wearing a purple dress. 2. Carly with hair growing back, wearing a colourful dress.

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Book me to speak for International Women’s Day

I am keen to speak at your International Women’s Day events! IWD is 8 March – I’m available throughout the month.

I can do a keynote plus q+a, or panel events. Topics I cover include disability and accessibility, appearance diversity, inclusive fashion, feminism, the arts, writing, and having cancer and entering early menopause. And I can tailor the speech to the theme of the day (the UN Women theme is “March Forward”), or whatever message your organisation needs to hear, of course.

I am based in Melbourne, and I can travel, or do online events. I’ve previously spoken at events for Meta, Monash Health, All About Women at the Sydney Opera House, Melbourne Fashion Festival, Vivid, University of Western England, and lots of writing festivals, schools, government orgs and local councils.

You can book me to speak by contacting my agent: Lucy@SpeakingOut.com.au, or sending me an email via my contact form and I’ll connect you. Feel free to share this post with someone you think might like to hear my message.

Here are a couple of testimonials from recent speeches:

We would highly recommend Carly as a speaker. She considered and understood the theme of our event and pitched her talk to the audience well. Carly also included a wonderful balance of personal insights, professional expertise and a human story line that kept the audience engaged.“
—Jeremy Hearne, SCCHC
“The session was amazing, we received some beautiful feedback from people who attended saying it was one of the best sessions that we’ve ever had at the TAC. Carly did a brilliant job, she’s such a professional. It was super engaging and refreshing to hear such an open and honest conversation. We would definitely have Carly back to speak again if an opportunity arose.”
—Kathleen Simpkin, TAC

In addition to speaking, I can write for your website or magazine, partner with your brand, and provide accessibility advice.

Thank you!

Image: Carly, a woman with red skin and short dark curly hair, standing in front of books, smiling. She’s wearing a colourful blazer. Text reads “book me to speak for international women’s day” and @carlyfindlay.

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Post chemotherapy hair growth progress!

 

Last year I was diagnosed with cancer and I had surgery and treatment. I had chemotherapy and radiotherapy. One of the two drugs they used for chemo made my hair fall out.

I had a really bad time with the first chemotherapy round, and they removed the aforementioned drug and gave me three more rounds with one drug, and chemo was then a lot easier on me.

I was really worried about my hairloss – mostly about the regrowth, given how brittle my hair is and how long it takes to grow back.

But losing my hair was surprisingly the easiest part of chemo and cancer. I loved how I looked bald. And the regrowth has been surprisingly easy too.

My hair fell out mid August 2024. I used Avène Xeracalm Balm and castor oil on my scalp twice a day when it was bald until about two months ago. The castor oil promoted hair growth (Jeanette Findlay fortuitously bought some in South Africa last year!).

This is my hair right now – January 2025. It is the thickest and strongest it’s ever been. It barely falls out or breaks off, even when I comb the scale from my scalp. The curls are coming back. My scalp is not patchy. It isn’t that itchy compared to before cancer.

I’m so happy. And my friends and colleagues and family can’t believe how thick my hair is either!

Oh and I’m now cancer free.

I joke that I should do a round of awful chemo once in a while to renew my hair! (Of course I wouldn’t. It’s the worst.)

I’ve been documenting my journey with cancer to make it easier for people with ichthyosis who are diagnosed with cancer.

Images: .1. A collage of Carly, a woman with a red face and gradually balding head she goes from losing some hair to completely bald. 2-3. Carly, a woman with red skin and very short dark curly hair, wearing a pink and gold dress with big puff sleeves, and gold boots. Shes also got a gold heart pendant on, and a Little Miss Fabulous brooch. She’s smiling in the second photo. The back of her head, full of hair, is the third photo.

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Good health news!

Got some good health news this week.

My oncologist told me I’m cancer free!

I am nervously excited. It’s a little hard to believe, and my body is still feeling some effects of chemotherapy and radiotherapy.

Thank you for everyone who has shown such incredible support these last eight months. Your kindness, encouragement and generosity has been so welcome – not just for me, but for Adam and my parents too. We feel very loved.
And a huge thanks also to the wonderful medical staff at the Peter Mac, Royal Women’s and Royal Melbourne Hospitals, Ambulance Victoria and Ovarian Cancer Australia – you’re the best, too.

I can’t wait for the exciting times ahead – I’ll do them at a slower pace, though.

I’ve been keeping this news close for a day or two, because I couldn’t quite believe it (and some new meds made me feel quite sick). But I wanted to share my news with you.

For everyone struggling with an illness or disability, especially the unknown and limiting parts of it – I see you, and acknowledge how hard it is. I hope that you have accessible, peaceful, hopeful and pain free days, and that you know how loved you are.

PS: I got good news about my eyes too – they haven’t deteriorated in 1.5 years.

Image: Carly, a woman with red skin and very short dark curly hair, wearing a pink and gold dress with big puff sleeves, and gold boots. Shes also got a gold heart pendant on, and a Little Miss Fabulous brooch. She’s smiling.

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Post chemo and radiotherapy update

Lots of people have asked me how I’m feeling lately.

It’s a little over a month since I finished five weeks of radiotherapy, and a little over three months since my last dose of chemotherapy.

I am good. I am happy.

The main side effect that’s hanging around is neuropathy in my fingertips during the day and pins and needles in my hands overnight. It came on in November, about a month after my last chemo dose, and has stayed. It can be really painful in my hands as I wake up in the morning especially, and has it affected my sleep occasionally. The neuropathy impacts my dexterity – I find it hard to scratch and do up buttons. The cancer doctors and nurses tell me the neuropathy and pins and needles will probably go away, but they don’t know when, and there’s no treatment. And so that adds to my anxiety of waiting. There’s so much waiting with cancer.

I also get tired easily, and I can’t do as many things in a day as i used to. This has been a lesson in boundary setting and self care – I am prioritising rest.

I’ve started exercise – which is a big feat for me as I don’t enjoy it much. But I need to get strong and build muscle and tone. And to my surprise, I’m enjoying it! I’ve been going to a yoga class for cancer survivors, plus I’ve done Zumba and reformer Pilates classes at my local leisure centre. I am starting slow with some modified moves. I feel strong and happy during Yoga and Pilates especially. Also – for my chronic illness friends – yes I’ve tried yoga, and I’ve still got ichthyosis!

I am back at work now. So happy for purpose and connection. Though I welcome more freelance work please – if you want to hire me for speaking, writing, content creation collabs, accessibility training, sensitivity reading or consulting, please message me. Thank you.

I am enjoying raw fish, soft cheese, salad, oysters and the occasional alcoholic drink again, after avoiding these almost entirely during treatment (apart from the treat day following blood test results post chemo). As mentioned, I’m loving fruit a lot!

I’m maintaining weight, which is a relief. My hair is also growing thick and strong, and rarely falls out.I love it.

Images: Carly, a woman with red skin, wearing a long green, pink and gold floral dress, belted with a gold wrap belt, pink shoes, black sunglasses and a pink floral scarf on her head. She’s standing in the shade under trees. She’s got her hands on her hips in the first photo and is carrying a big yellow flower shaped bag with sunflowers and ribbons on it.

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