Carly Findlay's Blog, page 7

Cost of Living – Melbourne Theatre Company

Gifted post:

I was lucky to be invited to the premiere of Cost of Living, a Melbourne Theatre Company production, last night. I went with my friend and colleague Amelia.

 

A show about class and caring: love and loss, Cost of Living puts disability on the main stage. It was heavy throughout, punctuated with humour for levity.

Brilliantly cast and acted, the set design was stunning, and I loved that some of my friends were involved in the production. The show is an example of authentic casting and a true reflection of wealth, privilege and power.

It stars Rachel Edmonds, Aaron Pederson, Mabel Li and Oli Pizzey Stratford; with Anthea Williams and Alistair Baldwin as Director and Assistant Director., and written by Martyna Majok. (It was also recently shown in Sydney and Brisbane, with a different cast and production team – my friends Dan Daw and Kate Hood were cast.)

Art should make us uncomfortable, and Cost of Living did this for me at times. So did the audience. When I see plays and films about disability, I’m hyper aware of how the audience reacts. There was a joke that involved a harmful disability slur. The audience laughed – and that was incredibly disappointing. I did wonder if the joke was a ploy to make a predominantly non disabled audience more comfortable, akin to one of the themes in the play. In any case, their ableism was showing.

Congratulations to everyone involved on a thought provoking production.

Cost of Living is showing at the Southbank Theatre, Melbourne, until 19 October.

Thanks to the MTC for the tickets. It was so nice to be out, seeing art and chatting to colleagues in the industry. Please keep the invites coming.

Disclaimer: I was gifted tickets to Cost of Living. I was not paid for this post, and I bought my own drink and chocolate.

Images: 1-2. Cast photos of Mabel Li and Olli Pizzey Stratford; and Aaron Pederson and Rachel Edmonds. 3. Carly and Amelia, standing at a black MTC media wall.

The post Cost of Living – Melbourne Theatre Company first appeared on Carly Findlay.

Feeling like myself

For the last week or so, I’ve felt the most like myself since late May.

[image error][image error][image error]

The side effects of chemo have been minimal – just sore skin. I’ve been able to get out and walk, and even do some weights and squats to help rebuild muscle. I’ve cooked and eaten good food. I’ve been out with friends. I went to work to have lunch with my colleagues. I’ve done things that have given me purpose. I’ve caught up with some life admin. I’ve read books and listened to poetry and podcasts. I’ve laughed a lot. I’ve enjoyed the sunshine. People continue to be amazingly kind and generous. And there’s still some more good things to come this week – even with chemo on Friday.

Since the day I arrived home from overseas, everything has been about potential cancer and then confirmed cancer. Life has changed immensely. I feel a sense of grief for what I’ve lost – for the organs that were removed from my body, as well as for how life was. I miss it. I miss having regular work and a good income, having energy to take me from day to night, travelling, being invited to events (don’t stop the invites please – let me decide if I can attend), connecting with people, and being a little more carefree. (And I acknowledge my privilege, that even with only Ichthyosis, I was able to live a very active life – while many disabled people are unable to, due to various personal and systemic barriers.)

I’ve cocooned while my body heals. I’m still cocooning a lot of the day, because I become sore and tired at about 3.30 pm. But I’m emerging, slowly. I can feel the sun after a dark, cold winter.

And it feels good.

I loved my outfit today, too. A couple of people have said it’s very Mary Poppins. I’ll take it.

I’m not working as much right now. If you’d like to buy me a drink, you can do on PayPal. Thank you.

Images: Carly, a woman with red skin, wearing a navy jumpsuit with green, purple and white flowers on it, a big collared purple shirt under, black boots, a dusty green jacket with jacaranda brooches on it, purple hat with an owl brooch on it. She’s smiling, standing in a garden and on a porch.

The post Feeling like myself first appeared on Carly Findlay.

Sashimi at last

Today’s lunch is brought to you by a high white blood cell count!

Chemo has meant I have had to avoid some of my favourite foods from after the infusion until I meet with my oncologist and get my blood test results – almost three weeks later.

This is because there’s a high risk of infection after a chemo infusion. I’m doing all I can to avoid infection – masking, avoiding crowds, not spending time with people who have contagious illnesses, dental and hand hygiene and avoiding certain foods.

The types of foods to be avoided are foods that have a bacteria risk – pre made salads and sandwiches, raw fish and meat, poached eggs and mayonnaise, oysters, soft cheese and cold or smoked meats including salmon. Leftovers and takeaway should be eaten by the next day.

As a foodie, this has been one of the hardest things about having cancer and chemo. My fave foods are sashimi and smoked salmon, oysters and soft cheeses. Uh oh,

Today my oncologist said my bloods were good, and that this is a safe time to eat one of my “forbidden” foods.

Today I chose sashimi. King fish sashimi with jalapeño from Chocolate Buddha. It was so delicious – such a treat!

After the last chemo cycle, it was a piece of soft cheese.

It’s the little things.

As always, consult with your doctor if you’re on a restricted diet.

Images: 1. A very happy Carly, a woman with a red face, wearing a purple hat, purple collared shirt under a navy jumpsuit with purple, green and white flowers on it, smiling, a plate of sashimi is in front of her. 2. The sashimi on a plate, it’s topped with a purple flower.

The post Sashimi at last first appeared on Carly Findlay.

Bald

 

I feel lucky that having a visible difference my whole life has meant I wasn’t scared about how I’d look after losing my hair during chemo.
I really like it.

My head is a lovely shape.

I haven’t mourned my hair, even through it took so long to grow.

My scalp feels very soft, and doesn’t get too scaly.

The thing I am scared about is how long it might take for my hair to grow back, given that one trait of Netherton’s Syndrome (the type of Ichthyosis I have) is “bamboo hair”. Hair breaks off, often at the scalp, and takes a very long time to grow.

I used to have many bald spots growing up, and these got very itchy and sore. It took many years of using lots of conditioner, sulfate-free shampoo, and finding a good hairdresser to get my curls strong and long. As chemo has been so hard on my skin, and I don’t know what’s to come, along with already brittle hair, I’m nervous.

The dermatologist said I should start seeing some fuzz in about a month, especially now I’m off the chemo drug that causes hair loss.

I’ll continue to be gentle with my scalp and wear hats. Maybe I’ll create a vision board of people with voluminous curly hair!

While I’m looking forward to my curls growing back, I’m also pretty happy with my bald head for now. It’s been a surprisingly easy part of chemo.

I’ve been writing for a long time, creating lots of resources that I know are useful. If you’d like to buy me a drink, you can do so here. Thanks.

Image: a selfie of Carly, a now bald woman, with red skin. She’s wearing a purple jumpsuit with a purple and green mermaid brooch. She’s smiling.

The post Bald first appeared on Carly Findlay.

How I feel after the second round of chemo

This round of chemo has been rather symptom-less, compared to last time. The oncologist removed one of the drugs completely, which she suspected caused the most physical and mental trauma for my body and mind.

This time, there’s been no neuroapthy; no weird tastes in my mouth; no sore throat, cough or loss of voice; no more dying fingernails, no shaking shivers. My skin pain was so severe last time that I cannot recall all of the other symptoms off the top of my head, but there were many (I’ve been documenting them).

Of course, I’m hyper-vigilant whenever I notice a change in my body, both knowing and not knowing what to expect.

This time I’m quite tired, and my skin is still very sore and dry, but not as excruciating as last time. Today my little toenail fell off, but it’s not painful. My fingernails are growing astonishingly fast.

As I’ve mentioned, I’ve had my first dealings with Centrelink and the NDIS, and convincing them that Ichthyosis is in fact permanent and severe, and has become more disabling because of the chemotherapy, is quite a challenge. Dealing with bureaucracy is by far the hardest part of having cancer.

I’ve had a huge week or so of socialising, and in between those events, I’m resting all I can. I’ve still been at home and in bed far more than I’ve been out. I’m excited that I finally have the brain capacity to read books again, and I’m currently deep into a brilliant audiobook. I have been able to write a lot more these past three months, which I’m loving (especially that it makes me feel productive). Writing helps me make sense of what’s happening, and it’s also a record for my medical team and others who may have Ichthyosis or another rare severe skin condition and get a cancer diagnosis (and their medical teams).

I am working a lot less right now – and I have a PayPal if you want to support me, by buying me a drink. No pressure. Thank you!

Image: a selfie of Carly, a woman with a red face, wearing a multicoloured neon tartan hat, and pink dress with red hearts on it. There are Strawberry Shortcake brooches on her dress. She’s smiling.

The post How I feel after the second round of chemo first appeared on Carly Findlay.

Fashion is giving me joy

Another thing that’s giving me joy lately is fashion.

This is what I wore on Saturday – a purple denim-y boilersuit (it’s OneTeaspoon), chunky boots, a purple and orange beanie and mermaid brooch – with warm layers underneath. I threw on a colourful check coat over the top, which has some purple squares in it, too.

It felt so fun and warm to wear, though I did feel like a little kid playing dress ups because the boilersuit is quite big on me now.

Over on my blog – CarlyFindlay.com.au – I wrote about how I’m getting used to my new shape and size, thanks to rapid weight loss being one of the symptoms of ovarian cancer. I’ve been a busty 10-12 for many years, and my uniform has mostly been oversized smock dresses. I don’t know my size right now – which isn’t helped by the size inconsistency across clothing brands.

I last wore this boilersuit in April 2021, and it was snug then, a little hard to move in. Now it is very baggy and I am ready to roll under a car like a mechanic!

I’m not feeling body dysmorphia right now. It’s more observing just how much my body has changed, and how my clothes look a little differently on me. I miss my big boobs and curvy hips – though I will not miss getting stuck in dresses while trying them on in change rooms!

I’m also mindful of having size privilege, as well as a relative normative shaped body as far as disabled bodies go, and I am able to access most clothing stores, even when they’re wildly inaccessible – unlike so many of my friends who use mobility aids. Though I do leave my skin behind and that can be very tricky when trying on and buying clothes; and I am sometimes overlooked as a customer due to unconscious and conscious bias and low expectations of disabled people.

But I think it’s important to talk about our bodies changing due to illness, and how it can take a while to get used to them.

I’m having fun playing in my rather extensive wardrobe and rediscovering clothes I haven’t worn in a while. I’m also enjoying layering and using belts, to give me shape. Dopamine dressing is definitely brightening the difficult days. But – pyjamas have been in constant rotation while I’m at home!

Images: Carly, a woman with red skin, wearing a purple denim boiler suit, black boots, a brooch that’s a purple and green mermaid, a purple and orange knitted beanie, and a green, blue, orange and purple check coat. She’s standing near a wall, smiling.

She’s wearing the coat in the first photo, the coat is off in the second.

The post Fashion is giving me joy first appeared on Carly Findlay.

Thank you

Sending a huge thank you for the kindness and generosity you’ve shown me and Adam over the last couple of months.

Thank you for valuing my work and caring about us enough to assist us in our difficult time, especially during a cost of living crisis. It means so much.

The donations to PayPal have been overwhelming – thank you. I’ve put them in savings, and they’ve gone towards life expenses and the occasional meal out.

Close friends have delivered food and sent vouchers for meals and laundry services – which is such a huge help when my body and mind are both so exhausted and pained and Adam has done a long day of manual labour at work. And I’ve finally let friends see me at my most vulnerable – in bed, messy house – and accepted their help with doing the dishes. And to those who’ve come to hospital with me – you’ve made it easier and fun.

Thanks for the reading and streaming recommendations and cute videos. And thanks for the messages and calls. Mum tells me some of you have checked in on her and Dad (Roger) too – please keep doing that.

As hard and life changing as things have been, I’ve been reminded just what an incredible community I have online, and how wonderful my circle of friends are. I’m blown away by your practical help, humour and knowledge. Thank you.

I’ve still got a little way to go with my treatment (things seem to be going well post second chemo) and I’ll still be resting as much as I can. Your wishes and assistance make it so much easier.

I’m looking forward to some more social times soon. Spring is here.

Love and thanks to all of you.

Image: a close up of pink cherry blossoms on a tree, with white text that reads “THANK YOU”.

The post Thank you first appeared on Carly Findlay.

Double hatting to keep warm and protect sensitive skin

People with cold, bald and sensitive skin heads: I got you!

This isn’t a sponsored or gifted post – I bought the beanies myself.

Here’s me double hatting – a crochet beanie hiding a merino one, and a felted floral hat hiding a jersey one. So cosy and protective.

I’ve been layering two hats while bald – both to keep me warm, and to reduce irritation on my scalp from the more stylish hats that often aren’t made from natural fibres. It also reduces the need to wash the outer hats – I treat the inner hat like underwear – wear one for a day and then I put it in the wash.

I found a couple of great beanies from Amazon that are made from natural fibres, easy to layer and are affordable – most under $20.

This first beanie is a pure merino one. I can wear merino against my skin without irritation (and am aware some people can’t). This beanie doesn’t dry my scalp out, is very warm, and washes well even with having my paraffin ointment on it. It comes in a few colours, and the price points are very good value considering merino can be so expensive. Find the merino beanies here.

The second is a cotton jersey beanie. It’s not as warm as the merino, but great to wear overnight, or in the daytime under a warmer outer har in the cooler weather. It is soft and washes well, though takes a bit of time to put it back into shape after a wash. These come in two packs, and a few colours. Find the cotton jersey beanies here.

My hair may grow back by summer, but the jersey beanie I’m particular will be great to wear under straw and cotton wide brimmed hats.

I know Amazon has its issues with its leader, company ethics and work environment – but it’s also accessible in price and delivery, for people who may find it hard to get to the shops. If you find similar beanies elsewhere, that’s great – you do you!

Happy hatting!

Images: 1. Carly, a woman with red skin, wearing a fluffy white floral jacket over a colourful floral dress, and a teal crochet beanie, hiding a fawn coloured merino beanie. On her jacket are brooches – honeycomb and flowers, and a bird in flowers. She’s smiling. 2. Another smiley photo of Carly, this time she’s in a colourful floral tee, and an orange and green felted hat with a big flower on the front. The hat hides a jersey beanie. 3. A cream coloured slouchy merino beanie. 4. A two pack of cotton jersey beanies – one is grey and the other is black.

The post Double hatting to keep warm and protect sensitive skin first appeared on Carly Findlay.

Art has brought me joy

A friend asked me what’s bringing me joy right now. I took a while to answer – because honestly, I don’t feel myself. My world has shrunk a lot, while I rest and recover and try not to go out as much. I feel I’ve lost my sense of purpose and connections. What did I do in the before? And I empathise with my disabled friends who are bed bound and house bound, and acknowledge my privilege.

Every week I think, I must do something fun. But then my health takes a turn or I have lots of medical appointments, or I’m watching my budget, or I can’t be in a crowd, or my friends are unwell, or I prioritise rest. So I don’t end up doing the fun thing.

In the past week, I’ve prioritised fun! I’ve seen art – which is both my work and hobby, and it’s brought me joy.

On Tuesday I finally saw the African Fashion exhibition at the NGV. I’ve been wanting to see this for months – and it didn’t disappoint. The vibrant clothes brought me such joy. And I wore one of the pieces I bought by a South African designer at the Watershed Market in Cape Town – fringed, woven collar by Patricia Nama. It was so beautiful to wear. I went to the gallery with Peta, and we had such a good time. She wore sequins for me, because we both agree it’s never too early to sparkle.

And on Saturday I caught a matinee show at Arts House. The show was “Splendid Anomaly” by Ahmarnya Price, whom I worked with in the early stages of Alter State. It’s a show about being a rare, leaking patient, trying to find answers about a little known medical condition. It was so impactful – acted by Ahmarnya, with illustrated animations and levity brought through references and recordings of text messages from her brother and her mum. The theme was quite close to home for me right now, but I still really enjoyed it. The highlight for me was seeing two of my Melbourne Fringe friends there – I haven’t been in the office for over two months and I miss everyone dearly. It was so lovely to see them and catch up. I work with wonderful people.

On the windows of Arts House are artworks by my friend & writing colleague, Amani Haydar. Amani’s exhibition is called “Women Reimagining” – it’s a vibrant series of self portraits and abstract representations of Muslim women.

Joyous!

More info:

Splendid Anomaly by Ahmarnya Price at Arts House

African Fashion at NGV

Women Reimagining by Amani Haydar at Arts House

Images: 1. Carly smiling in front of her fave design at African Fashion at the NGV. 2. Peta smiling in front of her fave design at African Fashion at the NGV. 3. Carly and Peta in front of the water window outside the NGV. images 4-15: dresses, suits and paintings and photos at the NGV African Fashion exhibition. They’re all colourful. 16. A show detail of Ahmanya Price’s Splendid Anamoly at Arts House. 17-20. Amani Haydar’s colourful paintings on arch windows at Arts House.

The post Art has brought me joy first appeared on Carly Findlay.

Happy Father’s Day to my Dad

My Dad, Roger, and I don’t have too many selfies. This one is from 2021, and I love how relaxed we both are.

Relaxing doesn’t come easy to either of us. It’s my Dad who tries to carries the worrying load for me. He’s always said “you’ll always be my baby, even when you’re forty”. I’m older than that now.

The last time I saw Dad was in July, when I went to my parents’ house in the country to convalesce. He said that if he could have my cancer, he would. I choked up. I don’t want any of us to have cancer, but his words showed just how much he seeks to make life more comfortable for me – since the day I was born.

He told me about his cancer experience, and also his mother’s (my grandmother). That’s been useful for the genetic tests I’ve had.

He’s talked me through money tips and connected me with his doctor – just so I could have an empathetic ear while I waited to get my diagnosis results. He’s gotten angry at my Centrelink struggles, urging me to write and speak about it.

I know he feels a bit helpless being so far away, but his sensible practicality has been such a help.

We give each other ginger bear hugs, in the way of typically stiff upper lip English people. I love you Dad, thank you for everything, especially right now. .

I hope today is as gentle as possible for those who struggle with Father’s Day, for whatever reason. Take care.

Image. A selfie of Carly and her dad Roger, smiling, both wearing black.

The post Happy Father’s Day to my Dad first appeared on Carly Findlay.