Carly Findlay's Blog, page 5

Having cancer gave me so many gifts in 2024 (even though it was a very hard time)

Even though seven months of this year was literal cancer, it wasn’t all bad.

Part of me doesn’t want the year to end. 

My 2024 was filled with amazing moments a particularly 7.5 weeks of life changing travel; and so many people showed such kindness and generosity supporting me.

I met most of my my family in South Africa – amazing. I heard stories of who my parents were before they met, and before they became parents. I learnt about Apartheid and met people who protested against it. I made friends in disabled artists & activists there. I went on safaris. I have a huge writing project ahead of me.

And then I went to France on an influencer trip, spending almost three weeks in a hydrotherapy centre above thermal springs in Avène. I made friends there too. My skin was treated so well – it looked and felt good. And the therapy prepared it for what was to come.

Before I went overseas, and during the trip, I had a lot of tummy troubles. Bloating, diarrhoea, not able to eat a lot, loss of weight, and bleeding.

The day I arrived back in Australia my life changed again. I had enormous pain and distending in my tummy at Singapore airport. I played down the severity to fly home. I went to the GP who sent me to Emergency, thinking I had sepsis. Five hours til I was seen. Had blood tests.

The nurses told me I was having blood tests for cancer markers. That was around 9.00 pm. No sleep since my flight. 12.00 am I had a CT scan. 4.00 am a doctor came to ask me what my family cancer history was. This is never a good time for any convo, esp one about cancer. No sleep.

At 5.00 am I was transferred to a hospital ward – at the Royal Women’s. A private room as I’d been to Africa. They let me sleep til 10 am. I had to tell my parents & Adam it’s likely I have cancer. And then more tests. A stomach drain. Relief from 5 months of symptoms, finally.

An emergency stay in hospital with suspected cancer ensures jet lag disappears quickly. Hospital food marginally better than plane food! 

Another night in hospital then home – cancer tests still inconclusive. 

I geared up to have more tests.

Went back to work.

And then I had a serious appointment where I was told the only final  way they could test for cancer was for me to have a hysterectomy. My friend Danielle was with me. She said I went green, hearing about the surgery options.

It happened very fast, but it was an agonising wait.

I found that the waiting times in everything related to cancer was the hardest part. 

The tumour was 11 cm in mid June. 

I was scheduled for surgery at the end of June, as the pain was increasing when I waked and slept, and I was bleeding. 

Went on leave again – maybe 6 weeks.

The tumour was around 25 cm when I was operated on. 

Surgery was fine. It was at 8.30 am, I was on the ward at 1.30 pm. I was up and showering  that afternoon, as a necessity. The surgeons and I did all we could to ensure my skin condition did not exacerbate in hospital. My skin heals very fast. I have no scars.

I was told I have cancer that night – the likely diagnosis was two types, but the surgeons would need to meet to determine the type and treatment plan. More weeks of anxious wait. 

It was confirmed I have Ovarian and Endometrial cancer. 

I thought I’d be able to work during chemo, but I couldn’t. I went on leave again. The first round of chemo caused the worst skin pain I’ve ever had. My skin fell off in huge pieces. I was raw. The physical pain caused me mental anguish.

Meanwhile, everyone rallied. My parents, Adam, my friends, my work, people online, strangers, makers.

It was incredible. I had time to convalesce. Meals prepared or bought for us. Laundry vouchers given.  Home help. Company. Tea and cake.

The reason I say that the time of cancer wasn’t all bad was because of the quality time I got to spend with people, and the love they showed me.

Danielle continued to come  to my first chemo and a few after. Other friends and colleagues did too – Sandy, Jodee, Natalia, Linda, Mum.

My work wife helped do the dishes, as did a friend from primary school who I’d not seen since the 90s. People saw me at my most vulnerable – I let them in.

People sent money via my PayPal. Our washing machine broke due to my ointment (the  NDIS doesn’t see this as an issue, of course!). A literal angel writer friend sent just enough money in the same hour as I bought a new machine – she didn’t know it until I called her crying with gratitude.

Brooch makers and other creatives sent me beautiful gifts.

A friend came with a cake, with “fucking fabulous” piped on it, her little girl gave it to me. We laughed when I asked if her girl knew what it meant. Fudging, she said. 

Work colleagues sent me videos of them dancing to Savage Garden. I attended as many Fringe shows as I could.

Jebediah and Magic Dirt and a friend organised for me to go to the sound check before the concert, because I couldn’t be in crowds during chemo. It was me, a friend and the bands’  crew in The Corner Hotel, on a late afternoon after chemo. We chatted to Jebs for ages after.

Chemo and radiation appointments were filled with my Mum and friends keeping me company. It was quality time. One time I had an entourage of five – we laughed and ate snacks and they held my hand when I got the cannula.  They gave me their pork crackling because they love me.

I spent months with my Mum – the most time we have ever spent together since I moved out of home in 2003. We holidays together and she was there for me for many medical things.

Adam’s workplace showed us incredible kindness too. The loving words expressed about their fondness for Adam made me cry. His handyman clients often gave him extra money for a meal, and one gave us some HEPA filters.

People stayed home if they were sick, so I wouldn’t get sicker.

Losing my hair was surprisingly easy, and I loved my bald head. And while I’m still nervous with needles, I don’t think I’m as needlephobic as I was at the start of this.

Every single medical professional was amazing. The care and dignity they gave me was exemplary. I loved how my specialists worked with each other.

I felt my most stylish because I had time to play in my wardrobe. Putting together outfits made me feel good.

Of course, cancer has been excruciatingly difficult  – especially the pain that chemo caused my skin, the expected side effects like my nails dying and falling off, neuropathy (still going) and constipation!l).

And the financial strain has been really hard. There’s no safety net for people who get suddenly sick. Cancer interrupts everything – my life was running on an urgent hospital schedule and work took a backseat.

One day I will write a longform piece on how Centrelink is the worst part  of having cancer. 

So many friends who are cancer survivors, and friends going through it at the same time, have been sources of advice, support and hope. Their experiences shared with me were vital. So selfless, especially those who were still going through treatment.

Someone I’d previously worked with, only online, messaged me the day before I started chemo, telling me she’s got cancer too, and would be at the hospital. We’ve caught up in waiting rooms and the cafe, and by text – comparing notes and sending each other love.

Another friend who’d had cancer sent me a care package featuring some of the things that had helped her – bamboo cutlery (great when my skin was too sore to hold metal), silk pillowcase and mouthwash. She gave me tips for what to do when waiting on results.

And while I was going through the hard days during chemo, I was able to help someone else, even tho I was only new to cancer myself. Someone in Europe with Ichthyosis who was diagnosed w cancer found my blog and said my words helped them. There’s so little info about how Ichthyosis interacts with cancer, chemo and radiotherapy out there. They’re doing ok so far. 

I made my cancer experience public so there was more info about ich that’s and cancer out there. I hope it helps other patients and medical professionals.

Some friends and I raised over $6000 for Ovarian Cancer research and support.

But the point of my thread is this.

In enduring such life upheaval showed how many wonderful people I have around me. How they stepped up, showed up and supported me, Adam and my parents.

It allowed me time to rest and heal. Proper time. Not feeling guilty like I do when my skin is sore.

I got the courage to ask for help. 

And I had so many wonderful moments with people I love. There were tears but there was so many laughs and light moments. 

I am lucky.

And I’m grateful.

I don’t know if I’m cancer free yet. The surgeons were confident they removed all of the cancer – chemo and radiotherapy was to catch stray cells. They treated me with curative intent. Hopefully there’s no recurrence. I find out results in a couple of months. 

I don’t want to be twee about this time in my life  – it was a really hard time. This isn’t toxic positivity. But I want to be honest about how it wasn’t all bad, because of the love and support I received – both medically, through work and from friends and family and strangers. 

I’m so grateful. Thank you.

If you’d like to buy me a drink, my PayPal is here. Thank you.

Image: Carly, a bald woman due to turn, standing near a cherry blossom tree. She’s wearing a pink floral dress and sunglasses, smiling.

The post Having cancer gave me so many gifts in 2024 (even though it was a very hard time) first appeared on Carly Findlay.

Thoughts on community at Christmas

Christmas makes me reflect on the year that’s been. What a year!

This year’s been a hard one. I didn’t expect a cancer diagnosis, and certainly not major surgery and the brutality of chemotherapy – the latter causing the worst skin pain I’ve ever had. I didn’t expect to be off work for so long.

But also – while the above mentioned things took the wind out of me, they also enabled me to experience so much kindness, love and generosity.

Chemotherapy and some radiotherapy sessions featured friends who I got to spend a lot of time with. We had deep chats, silly chats and laughter. People sent me money, and vouchers for food and laundry services (and also food treats). My workplace continued to check on and include me, allowing me time to heal. I got to see my Mum a lot more than usual. And the many medical staff I saw were incredible- skilled, gentle and kind.

And I also got to go overseas to South Africa and France on a working holiday – it was incredible. Life changing! I got to meet most of my family on my Mum’s side in South Africa – and we continue to be in touch. France prepared my skin for what was to come, because of my treatment at the hydrotherapy centre. I made friends in both countries. Wonderful memories were made.

I’ve sent a lot of messages today to people I love to thank them for being there for me through such hard times. I mean that – I’m very lucky to have such a strong community around me, and I hope that if you ever become suddenly sick, or endure something life changing, you’ve got a supportive community around you, too.

I’m feeling very grateful and happy today – I’m glad for the rest and for the people in my life; and I’m looking forward to the future.

You’re welcome to buy me a drink if my work has helped you. Thank you.

Image: Carly, a woman with a red face, wearing a scarf on her head, an orange, white and purple dress with yellow sunflowers printed on it, dark sunglasses and gold shoes. She’s smiling gently.

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Hangovers from chemo

Even though my last dose of chemotherapy was administered over two months ago, I’m still experiencing side effects related to chemo. It’s quite annoying!

For the last three weeks or so, I’ve had pins and needles in my arms and hands when I wake up. This is different to the neuropathy I had in my feet during the first round of chemo. It’s tingly pins and needles, not heaviness and pain. The sensation has eased a little in my arms, but it remains in my hands pretty much all the time now. The cancer nurse said it’s related to the nerves that have been impacted by the chemo. I am not sure when it will stop, and the nurse was so apologetic that she had no solutions for me. I have to ride it out. It’s not painful. Just annoying.

My teeth have been tender, and sometimes my gums too. I was lucky not to have mouth ulcers during chemo. But recently my teeth have been tender – like I can really feel them in my mouth. Sometimes my gums hurt from the toothpaste. It’s not every day, which is good. I must go to the dentist – which I’m scared about after previous dental trauma.

And just over a month ago, I had another unexpected mild food allergy – peanuts. My throat got scratchy after I ate peanuts, and it was eased with yoghurt and antihistamine. (The first allergy was prawns, after my first chemo – I had to call an ambulance.) I suspect a weakened immune system from the chemo, and a skin condition prone to allergies, has set the allergies off. I’m getting a referral back to the Immunology clinic again.

I joked that there was a new side effect every day during chemo – I didn’t expect them to pop up weeks and months after my last dose!

And the radiotherapy doctors and nurses have warned me that the worst side effects from radiotherapy will appear this week and next. So I’m still going gently.

No medical advice needed, thanks. I have been in touch with the doctors and nurses, of course. I just wanted to share here.

On the up side:
my hair is growing back thicker and stronger than ever, and my fingernails have almost all grown back after each one fell off halfway down the nail.

(Sunnies kindly gifted by Bailey Nelson )

Image: Carly, a woman with a red face, wearing a green floral hat, sunglasses, white shirt embroidered, with colourful flowers, jeans and sandals, standing in a laneway, smiling.

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Hurrah – the end of cancer treatment at the Peter Mac

Yesterday, after around five months of treatment at the Peter Mac, I finished treatment for ovarian and endometrial cancer. Prior to attending the Peter Mac, I had a hysterectomy at The Women’s.

Here’s what happened while at the Peter Mac:
A PET scan where in the lead up, I couldn’t move or speak!
Tests to see how my liver and kidneys were functioning before chemo.
Appointments with the medical oncologist and radiation oncologist.
Four rounds of chemo – the first was terrible, the last three were easier.
Countless needles – I am still needlephobic, but a little less so.
An appointment to measure me up for radiotherapy.
Five weeks of radiotherapy every weekday.
Counselling with a psychologist specialising in cancer.
Frustrating calls with Centrelink (I finally have a Healthcare Card!).
Appointments with the dermatology team at the Royal Melbourne Hospital; occupational therapists at Peter Mac and dietitians at The Women’s.
Confirmation that my cancer doesn’t have genetic mutations – which reduces the chance of recurrence.
Regular calls and emails with the cancer nurses who work across The Women’s and Peter Mac, plus with the ovarian cancer nurse at the Teal Program.
Delicious food at the cafe.
(But still no sighting of the therapy dogs!)

The hospital process has been incredibly organised and mostly on time, and everyone working there has been so wonderful.

My friend and agent Danielle has been to so many appointments with me – she was there when I was told I’d need to have a hysterectomy, for the liver and kidney test and two chemo rounds, and for my first and last radiotherapy sessions. She’s amazing.

And I’ve had incredible love and support from many other people – my parents, Adam, my employers, friends and many people on the internet. Thank you – I’m very lucky.

So what’s next?

A rest. It’s a full time job having a chronic illness (cancer on top of Ichthyosis is a lot). I will have some follow up tests and appointments early next year. I hope the treatment has worked. I’m also looking forward to working more in 2025. Hurrah!

I am still not working as much – please consider buying me a drink – thank you.

Images: Carly prior to and post treatment; Carly & Danielle in waiting room & near a Bromley painting.

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Radiotherapy progress

I am almost done with five weeks of radiotherapy. I realised I haven’t provided any updates on how I’m doing. I know I don’t owe anyone my medical details – but I’ve made a decision to be public about my experience with cancer and cancer treatment so that the next person with ichthyosis who is diagnosed with cancer (and their dermatologist and oncologist) won’t feel so alone. Because I couldn’t find any info on how chemotherapy and radiotherapy interacts with ichthyosis when I was diagnosed.

I am using my public platform to share my experiences – and I acknowledge that everyone’s cancer experiences and treatment is different, and the same for ichthyosis.

So – how am I after 22 sessions of radiotherapy? Good.

I’ve been doing it each weekday (apart from one Friday which was swapped to a Saturday). I wake up around 6.00 am – which is hard as an arts worker, even harder when I’ve not had to get up before 9.00 am while I was on leave! I’m at the hospital around 8.00 am to have treatment at 8.30 or so – depending on how my bladder behaves.

I was really scared of radiotherapy, especially after the terrible experience I had with my first chemotherapy dose. I didn’t think I’d make it through. But I can do hard things.

Radiotherapy will reduce the risk of the cancer recurring, but there are many side effects. I was really worried about them, especially the impact it might have on my skin.

Fortunately, very few of the side effects have emerged. I have had diarrhoea a few times lately, and in a little tired. My skin has been fine – I already use Dermeze which they give to patients. It was a little scalier than usual for a few days but nothing as bad as it was during chemotherapy.

The hardest things are trying to relax on the bed (it’s hard to relax with my pants down and bladder full – but the staff are so great at reassuring me); and ensuring my bladder is full. Radiotherapy is all about precision – so these things are important. As mentioned previously, even when I drink a lot of water, it goes to my skin. Ichthyosis makes me very dehydrated. So it takes ages to fill my bladder. Drinking warm water helps. It often takes a long time to fill my bladder if it’s hot, or after the weekend.

I keep getting asked if I am very tired – yes, but I don’t know if it’s because I’m getting up early and being back at work, or if it is the radiotherapy.

Every day I get a little appraisal of how my body is responding on the bed – compliments like my bladder is perfect or I’m very gassy.

The staff I see each day are so good – and I’ve come to chat to other patients and their support people in the waiting room.

Two more sessions to go!

I am still not working full time, and I know my posts are useful for readers. If this post has helped you, please consider buying me a drink. Thanks.

Image: Carly at the NGV, in front of pink spot art and silver balls.

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Love in action

I responded to this tweet, as it’s something I’ve been thinking about for a long time.

My experience of cancer has been one where I’ve been shown so much love, generosity and kindness from near and far. The support has made a difficult six months or overwhelmingly easier – thank you.

That isn’t to say I don’t receive the same for my experiences with ichthyosis, although I think that it’s seen (by me and by others) as something I’m very used to coping with, and so I very much manage ichthyosis with minimal support..

I’ve asked for and accepted help for the first time in my life – and people helped in so many ways. They’ve cooked meals, sent vouchers for laundry and meals, avoided me when they’ve been sick,washed the dishes, folded washing, come to hospital appointments, held my hand. I let them see me at my most vulnerable; my house untidy; my skin the rawest and sorest -because of the chemo. And that didn’t come easy to me. This is mostly because of the shame associated with having a severe skin condition. So much of me gets left behind. But they have been there for me, despite. Love in action. It’s been a time of such valuable connection. I’ve appreciated it immensely.

I tweeted a reply because I regularly see disabled people treated with far less care than cancer patients receive – left discarded and isolated; gaslit, disbelieved; poor. It’s a huge contrast.

I’ve always maintained that chronic illness and disability is not a competition of who has it worse. It is all relative, and every experience is valid, no matter how insignificant it seems. Cancer shouldn’t be the illness that gets the most support. We need to view all chronic illnesses and disabilities like cancer when it comes to community support.

I hope my willingness to ask and accept help, and people’s generosity stays when I have survived cancer. And I wish this for my disabled friends too.

Image: two tweets, stacked. The top tweet is from @ byowife, it reads: “i wish being chronically ill was an experience full of caretaking, being fed homemade meals, gentle massage, making sure i take my medications, not mostly just being trapped to suffer alone begging the last people in your life to help you wash a dish every week til they hate you”. The bottom tweet is from me, it reads: “I wish this too.In my recent cancer experience, I’ve found that people’s response to someone having cancer is much different – much more involved – than when someone has another type of chronic illness. I want to see the same level of compassion for all illnesses “

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Cripmas Wishlist for the Government this International Day of People with Disability

I know International Day of People with Disability is about the disability community – but it doesn’t hurt to ask the Government to bring some gifts to the Cripmas party. Here’s my wishlist for the Government this Disability Day:

To appoint a Disability Minister – who is actually disabled (and for there to be more than one visibly disabled politician in parliament; and for Parliament House to be more accessible and less ableist)To raise the rate of the Disability Support Pension to ensure disabled people aren’t living in povertyTo increase accessible housingTo better support disabled people who are working and may earn above the Disability Support – Pension threshold – provide a healthcare cardFor the Disability Support Pension to account for dynamic disability – a condition or impairment that varies in severity and impact over timeTo consider lived experience alongside medical advice in Disability Support Pension and National Disability Insurance Scheme applicationsTo reinstate the Sickness Allowance scheme for people who become suddenly chronically illTo make it illegal to pay disabled people $2 an hour (far less than minimum wage)To make forced sterilisation for disabled people illegalTo expedite the implementation of outcomes from the Disability Royal CommissionTo make application processes for disability support programs more accessible, less emotionally stressful and not reliant on us disclosing every aspect of out lives or basing the applications on our worst dayTo ensure the National Disability Insurance Scheme allows all disabled people a chance at full and meaningful participation in the communityTo adequately fund the National Disability Insurance Scheme, and not penalise disabled participants for the abuse of the scheme by providers and criminalsTo grant disabled people marriage equalityTo see disabled people as multi-faceted human beings, allowing us independence, autonomy, dignity, safety and financial freedom.

What do you wish for Cripmas?

Image: a Christmas tree formed by red squares, and text “Merry Cripmas – my Wishlist for the government this Disability Day”.

Has this post helped you or made you think? Will you use it in your work? Please consider buying me a drink – thanks!

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Some thoughts ahead of Disability Day 2024

I hesitated posting this, as I know it may read as me seeking sympathy, or may result in some mockery. But I don’t shy away from being vulnerable. And it’s not just about me.

We are a week  from International Day of People with Disability and it’s very quiet. It’s not just me feeling this way – so many of my disabled friends and colleagues say they’re feeling the same. It’s quiet worldwide.  

Disability Day is usually my busiest work event of the year. It spans over a couple of weeks, and I often struggle to rest. This year is my quietest ever. I have work, but not much.  (I did get asked to do some free work, of course! ) I realise I’ve been given space because I’ve been on leave because of cancer treatment and recovery. But I am open to work now, and have been very clear about my work capacity. 

Optimistically, I hope that disabled people have a high enough profile that the work is being spread across the community. But that’s probably not true. We’ve been forgotten and ignored so often – the silence from “allies” around the response to the Disability Royal Commission in September 2023 comes to mind. The response included  commitments to increasing employment, ensuring  rights and anti-discrimination practices are upheld, and promoting access and inclusion in all aspects of society “to improve community attitudes around disability”. The silence around Disability Day shows that we will continue to be isolated, harmed and face barriers to access and inclusion.

I also see many culturally significant days and weeks acknowledged and celebrated, and significantly funded, but Disability as a culture is constantly overlooked. (A UK based activist wrote on LinkedIn that she received many enquiries to speak at Pride events earlier this year, but none for Disability Day). 

The theme for 2024 is Amplifying the leadership of persons with disabilities for an inclusive and sustainable future. Disabled people make up approx 20% of fhe population. What are you doing as organisations, brands and individuals to celebrate and amplify disabled leaders on Disability Day and beyond?

I hope come 3 Dec, we see lots of posts and events celebrating Disabled people. I hope I am proven wrong. 

Image: Carly, a woman with a red face, wearing a gold turban and a pink and gold dress with very puffy sleeves. She’s smiling. Dress previously gifted by @stfrock.

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Me having cancer doesn’t mean your situation isn’t bad

Just because I have cancer…

please don’t diminish the severity of your medical condition or disability,

and

please don’t avoid telling me that you’re in good health.

Me having cancer doesn’t take away from you having a difficult or wonderful time. I want to support and celebrate you.

Image, a selfie of Carly, a woman with a red face, wearing a chambray shirt over a black top, a silver necklace and a colourful head scarf.

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Slow down

Slow down.

I posted this text on my stories and it generated lots of discussions in my messages, so I’m posting here too.

I want to talk about slowness as an access provision.

I hate being rushed. At the supermarket when I’m packing my own bags. In a queue. Getting on and off a plane. Hate it.

Many disabled people don’t or can’t move or speak fast – because of our bodies, minds and voices; and also external barriers.

So when people rush us, perhaps because they don’t consider or even see disability – they’re just focused on productivity and efficiency – it can be overwhelming. It can also be humiliating.

Recently I was urged to hurry up, and I had to gather my things. My fingernails have broken because of chemo, and it’s hard to do things with my finger tips. I was so flustered trying to gather my things, and move on quickly.

Slow is not silly. Slow is not an inconvenience. We are not being difficult or incompetent.

Please, consider slowness in your access provisions. Don’t pressure us to move or speak or think at your speeds. Please be patient.

Meeting us at our own speed shows respect.

Disabled and chronically ill people: how does being rushed impact you? Why do you need the world you interact with to slow down?

Image: a selfie of Carly, a woman with a red face, wearing a scarf twisted over her head, and a white floral dress. She’s smiling. “Slow down” is in curved and straight black text next to her.

Has this post helped you or made you think? You can buy me a drink to show your appreciation – thank you!

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