Carly Findlay's Blog, page 9

The care I get as a cancer patient vs the care the Australian Government gives disabled people

The care I get as a cancer patient, compared to the care this government gives me and 5 million other disabled people is poles apart.

As a cancer patient, I’m believed, respected, cared for, get access to multiple supports, treated holistically, and my needs are met above and beyond what I ever imagined. My disability is seen as a part of me. My existence is valued.

As a disabled person, the government treats me and other disabled people like we are asking for too much. We are disbelieved, punished, deprioritised, left unsupported, made to feel we not disabled enough. Our disabilities are seen as burdens and cost blowouts, unworthy of access, inclusion and cultural safety. We are not valued.

It’s a joke.

I am constantly astounded by the support I get in the hospital system, compared to the supports disabled people get from the government.

After Wednesday’s shameful outcome of the government only accepting 13 out of 172 recommendations from the Disability Royal Commission, and getting an unrelated able-splainey call from the government, I’m angry.

I’ve wanted to write a lot on this topic since it was suspected I had cancer, but I’m just too busy and tired with recovery and medical admin.

We deserve better.

I apologise if I haven’t articulated myself well. Big day.

I also acknowledge my experience isn’t the same as every other disabled person’s or cancer patient’s.

I left this comment in a FB group about the recommendation to close special (segregated schools):

I also respect that “special” schools are supported by many parents of disabled kids, and acknowledge that I am not a parent. But I am a disabled person who struggled in mainstream schools without support. And I am a part of the disability community. I do suggest you listen to disabled adults who are talking about the phasing out of special schools, and why segregation is harmful. You must listen to those who’ve been to segregated schools and employment, especially. Segregated schools can lead to segregated work, sub par pay, and a segregated life. Many disabled people are paid below the minimum wage and this is legal. Disabled people need to be included in every aspect of the community – including in mainstream schools and employment. And mainstream schools and employment must become accommodating to all disabled people. Thank you.

If my work has helped you think about disability differently, please consider buying me a drink. Thanks.

Images: 1. Carly at the hospital, near an artwork of a pink blossoming tree. 2-3. Screenshots of an ABC article. Text reads: “Federal government responds to disability royal commission, disability advocates ‘devastated’

By the Specialist Reporting Team’s Evan Young, national disability affairs reporter Nas Campanella and political reporter Claudia Long
Posted 10h ago10 hours ago, updated 4h ago” with an artwork of silhouettes of people below. Text: “In shortThe federal government has announced its initial response to the disability royal commission, though advocates say it falls well short of what they hoped for.
It has accepted in full 13 and in principle 117 of the 172 recommendations it has primary or shared responsibility for.
What’s next?The government says it will continue to work with state and territory governments, as well as people with disability, to implement reforms.”

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Day one chemo thoughts

Day one chemotherapy thoughts:

I’d been wanting to get a recliner chair for a while. I can sit on many at the hospital instead.

I wore things that people I love made or gave to me, so I had them with me today. A bracelet made by a child, brooches made or given to me by friends, a beanie from a friend, a hand crocheted blanket made by friend.

It took four goes to get the cannula in. I listened to Savage Garden while this was being done. Nurses are wonderfully gentle.

With the nurse’s advice, I decided against having the scalp cooling cap that can reduce hair loss, as Ichthyosis makes my scalp too tender to wear it and to maintain the hair after chemotherapy. I have many hats.

I met some wonderful patients in the treatment ward. All of our lives have been rudely interrupted. All of us were able to have a laugh.

I have Ambulance Victoria cover, and until last week, I was unaware that it made me eligible for Patient Transport to and from these hospital appointments. So I’ve been driven to hospital by Ambulance Victoria and St John’s Ambulance (no sirens of course) – it’s much less stressful than navigating traffic myself, there’s people to talk to (if we want) and it saves money on petrol and parking. (I’m not sure what other services Patient Transport covers – check with your hospital and doctor, and Ambulance Victoria.

The most common bit of advice I received from nurses, doctors and other people who have survived cancer is that exercise helps. So when I got home, I walked for about 35-40 min. I even went for a jiggly jog for two blocks/one Foo Fighters’ verse and chorus. It did feel good, moving in the brisk air.

I’m tired now, mostly in my bones, but I’m not sure if the steroids will let me sleep. I hope I can.

Images: 1. Carly, a woman with a red face, wearing a pink floral dress and pink and yellow beanie, under a colourful crochet blanket, in a reclining chair, with an IV in, smiling. 2. A beaded bracelet on Carly’s wrist. 3. Bandages and bandaids on her wrist after treatment. 4-5. White and pink flowers on a walk. 6. The sky at dusk – it’s pale blue with pale pink swirly clouds. 7. Carly wearing a pink & yellow beanie & a neon puffer.

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How am I – ahead of chemotherapy?

How am I? Here’s how I feel right now.

Even though I’ve got a lifelong chronic illness, this feels different. My whole life seems consumed with recovering from surgery and this new diagnosis of cancer. It seems to be all I think and talk about, but I’m tiring to work and spend time with friends so cancer is not 24/7. I was able to have a bath for the first time since surgery, that was nice. I have been cooking. I can drive again. I’ve laughed with friends. I’ve made some good progress with work projects.

Except managing medical stuff is a full time job. I had eight hospital appointments last week. I’m worried about how this impacts on my family, friends and work. I’m worried about feeling terribly sick. I’m worried I won’t recover and I won’t be able to do everything I want to do.

My voice shakes at the end, because I’m really scared.

Thanks to everyone for being so supportive. Thank you to the incredible doctors and nurses in the public hospital system.

Video: Carly, a woman with a red face and short dark curly hair, wearing a bright floral dress and purple and blue floral necklace, talking to the camera. Captions are above her head. Soft piano music plays in the background.

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How am I?

How am I? Here’s how I feel right now.

Even though I’ve got a lifelong chronic illness, this feels different. My whole life seems consumed with recovering from surgery and this new diagnosis of cancer. It seems to be all I think and talk about, but I’m tiring to work and spend time with friends so cancer is not 24/7. I was able to have a bath for the first time since surgery, that was nice. I have been cooking. I can drive again. I’ve laughed with friends. I’ve made some good progress with work projects.

Except managing medical stuff is a full time job. I had eight hospital appointments last week. I’m worried about how this impacts on my family, friends and work. I’m worried about feeling terribly sick. I’m worried I won’t recover and I won’t be able to do everything I want to do.

My voice shakes at the end, because I’m really scared.

Thanks to everyone for being so supportive. Thank you to the incredible doctors and nurses in the public hospital system.

How am I? Here’s how I feel right now.

Even though I’ve got a lifelong chronic illness, this feels different. My whole life seems consumed with recovering from surgery and this new diagnosis of cancer. It seems to be all I think and talk about, but I’m tiring to work and spend time with friends so cancer is not 24/7. I was able to have a bath for the first time since surgery, that was nice. I have been cooking. I can drive again. I’ve laughed with friends. I’ve made some good progress with work projects.

Except managing medical stuff is a full time job. I had eight hospital appointments last week. I’m worried about how this impacts on my family, friends and work. I’m worried about feeling terribly sick. I’m worried I won’t recover and I won’t be able to do everything I want to do.

My voice shakes at the end, because I’m really scared.

Thanks to everyone for being so supportive. Thank you to the incredible doctors and nurses in the public hospital system.

Video: Carly, a woman with a red face and short dark curly hair, wearing a bright floral dress and purple and blue floral necklace, talking to the camera. Captions are above her head. Soft piano music plays in the background.

The post How am I? first appeared on Carly Findlay.

Brain fog

One symptom I’ve had lately – and I think it’s a combo of recovering from surgery/anaesthetic, learning I have cancer, menopause and just because I have a lot on my mind – is brain fog.

I’m forgetting words, not as quick to interpret things, and slower on completing tasks. It’s really hard as a writer and speaker. My brain is usually like a computer with 100 browser tabs open and I am adept at navigating all of them all at once.

But now, not so.

On Sunday, Adam bought solar lights from Bunnings. They’ll help to guide where to park the car at night. The lights are mushroom shaped, at my request because I am creating a fairy garden at the age of 42.

It has been gloomy here – very cold and no sun.

About four hours after he planted the solar lights, he announced loudly “the mushrooms aren’t charging!”

I was so confused. “Huh?” I asked three times. I didn’t buy mushrooms. Why would they need power anyway, they are fungi? Is he taking hallucinogenics? (NO!)

“The solar mushrooms – they’re not charging because there’s no sun”, he said.

Ohhh. I asked him to explain things to me clearer now.

Last week at my parents’ their solar hot water was not heating high enough as there was no sun. A day later, I thoiught of a witty reply for Adam – better late than never.

“The mushrooms can talk to my parents’ hot water tank about the lack of sun!”

Anyway, if you see me and notice I am slow to respond, or forget a word or a name, please be patient with me! My mushrooms are not charging as quickly as they should, during this less sunny time of my life.

Images: 1. The back of my red car parked near a solar mushroom and shrubs. 2. part of my fairy garden near the front door – featuring gnomes and a house and mushrooms.

Has this post or my previous work helped you think about disability and chronic illness differently? Please consider buying me a drink. Thanks!

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When I write it down, it makes sense why I am feeling overwhelmed.

I just sent this text to a friend who asked how I am. No wonder I’m feeling overwhelmed right now. Shoutout to everyone else with a lot on their plate right now. It is too much all at once.

I had a productive doctor’s appointment today, and now have a path forward; and I have spoken with some friends in similar situations in the last week. I am healing well too. So I’m feeling hopeful. I’m still scared – of the treatment and of the outcomes. I’ve asked the doctors if I’m going to die twice this week.

I want to talk more in depth about the symptoms I had one day, because I think it’s important that people with ovaries and uteruses are aware of what symptoms to look out for that could mean it’s cancer, (because I wasn’t). But right now, my public advocacy (for health issues I’m experiencing and for wider disability issues) is on hold while I rest. Thanks for respecting my boundaries.

I’m back at my arts festival work tomorrow and Wednesday, because I want a distraction, and I want to be useful, and I want to make art. I’m excited for the connections and purpose.

I am very grateful to the many, many people who’ve shown support in many ways. Thank you.

I am working a bit, but work has decreased due to cancer. There’s many blog posts, social media posts & interviews I’ve already done – educating on disability, & appearance diversity. If my work has helped you, or you use it in your work, please consider buying me a drink. Thank you!

Image: a screenshot of the following text.
“It’s all happened very fast – even though I had symptoms for many months, I didn’t know they were cancer related. I went from getting home to Melbourne from seven weeks holiday OS to going to emergency at the hospital on the same day, to being told I have to have a hysterectomy because I may have cancer, to being operated on and diagnosed with cancer in a month.
It’s a lot to comprehend. ”
It’s black text on white background.

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Cancer, hysterectomy and early menopause – the whole shebang

I have cancer. I also had a hysterectomy. And I’ll come into early menopause. The whole shebang. Three things that I never saw coming. But here we are.

The surgery went well and I seem to be recovering ok, but this is the first time I’ve had this type of surgery so I don’t know what’s normal.

Unfortunately two types of cancer were detected during surgery. Tumours were removed. I was operated on and diagnosed on World Rare Cancer Day. Cancer is not something that I wanted to be an over achiever in!

I’ll find out more about the diagnoses and treatment soon. The medical team I have is wonderful, taking things slowly and honouring my lived experience of Ichthyosis.

Everyone around me has been incredibly gentle and kind. The surgeon who led he surgery held my hand as she told me the news. Nurses are angels and should be paid more. Friends have brought around dinners and cake and craft projects, and have sent me tea and chocolate books about menopause. I’ve had reassurance and empathy from people I’m close to who have had cancer. Mum and Dad are sternly telling me to rest. Adam has agreed to an electric blanket.

Even though I knew cancer was a possibility, it’s a lot to take in, especially while recovering from major surgery.

I work as a writer and speaker, and I can’t find many more words right now. It even feels strange saying I have cancer aloud or writing it down. I don’t know how to feel or what to expect.

And I keep having to deliver my bad news to people.

So it’s one day at a time.

Please be patient with me if I haven’t replied to you, or been my usual chatty self. I’m not up to doing a lot – not even sharing worky social media posts. Send all work enquiries to my agent – Danielle@JacintaDiMase.com.au. And please no woo woo, horror stories or intrusive questions in my comments or DMs. I am in good hands with my medical team.

And yes, I have a brooch for every occasion – this selfie was taken just before I had surgery – the Operation game brooch was a fun talking point among the medical staff. Bzzz! If only there were women and gender diverse versions of the Operation game!

If my previous posts have helped you think about disability differently, or if you’ve used my words in your work, please consider buying me a drink. Thank you.

Image: a selfie of Carly, a woman with a red face, short dark curly hair tied back, wearing a white mask that covers the lower half of her face. Shes wearing a fluffy purple coat over a hot pink jumper, and a brooch that is the Operation game is pinned to her lapel – a man I named except for boxer shorts, ready for surgery, with body parts visible, tweezers hanging to remove the body parts. She is standing near a white wall, her head obscuring a painting.

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How am I feeling ahead of my hysterectomy? It’s complicated.

I’m processing my feelings in the best way I know how – writing it down.

I am having a hysterectomy because I have a large growth on my ovary. I have had symptoms which I thought were related to bowel conditions for six months. The ovarian cyst was detected last month, the day I arrived back in Australia, after seven weeks overseas.
Currently I have pain where the cyst is, and I’m tired. Some of bowel symptoms have decreased, thank goodness, but some remain.

The ovarian cyst is large and it may be cancerous, but we don’t know yet until I have surgery. All non invasive testing options have been exhausted, and now the only way to test is to remove the ovary. And my uterus and cervix will be removed too. They can test for cancer during surgery.

If it is not cancerous, they will stop there. If it is cancerous, they will take the other ovary, pushing me into early menopause. 

It’s a lot to take in. Exploratory and preventative surgery for potential cancer, resulting in possible menopause.  And of course the surgery itself, which may have a severe impact on my skin. Cuts and grazes heal well so I am hoping that this applies to surgery wounds too.

I asked what if I didn’t want surgery? The gyno-oncology surgeon said that the ovarian cyst would grow, and the pain and other symptoms would worsen. Chemotherapy and radiotherapy would be hard on my skin. More than one operation would be hard on my skin. 

So much to consider.  

So many what ifs. 

I might have cancer. I might not have cancer. All of my symptoms point to ovarian cancer’s symptoms, but the tests to date are inconclusive. And the doctors have encouraged me not to get ahead of myself, and so I haven’t read much more than the symptoms for ovarian cancer, until after the surgery, and maybe then I will be able to close that cancer handbook on that page.

But either way the result will be the same. I won’t have a uterus or cervix or or or two ovaries, and I may go to menopause at a time that I might not be ready for.

My body autonomy feels like it has been taken away, even though I know it’s for the best. I have prided myself on being in control medically – stopping having medical photography when I reached puberty, and saying no to drugs that would make my skin look “better” but compromise my quality of life by impacting other parts of my body. 

Now, there’s no chance of having children. Even though I am not particularly maternal, that I am 42 and my natural chances are low, and that Adam and I enjoy our free time, I still value the choice and chance. And I love the children in my life, and I have a close relationship with my Mum. But now I definitely won’t be a Mum, even though a month ago, I didn’t want to be a Mum anyway. 

I was once offered a large bribe not to have children, so I wouldn’t pass on Ichthyosis to a child. While I was undecided about children then, age 33, was indignant and defiant against taking that ableist bribe, because I wanted the choice to have children to be up to Adam and I. All disabled people deserve that choice. It is no one else’s choice to make, and having a child with Ichthyosis would not be a tragedy, especially as their mother would have Ichthyosis too.

It’s also an odd feeling when menopause may happen immediately, even though I don’t know when it would naturally start, or how it will impact me.

When I was told I need to have a hysterectomy and there may be a chance of early menopause, I anonymously asked a support group of people with Ichthyosis what the impact of menopause has been on their skin. I didn’t go into the reasons for asking,. The response I received was brusque, dismissive even, and quite a shock. “It is just like any other woman, you have to deal with it.” Not so supportive.

Ideally if I had the choice to go through menopause in my body’s own time I would be having a lot of time to research menopause. I had already slowly started to do this, just by way of having many friends in this age group, and consuming media about it. I’d have in place  the things I can do to make my life as comfortable as possible. But with all of the possibilities presented to me, feeling unwell and managing work and life, I don’t have that luxury of time. 

And the exchange with the other woman with Ichthyosis reminded me that so much money is spent on research for eradicating the gene that causes  Ichthyosis, thus eliminating people with Ichthyosis, rather than focusing on people living and existing and thriving with Ichthyosis. And so it gives me a reason to speak of my experience, again, so others don’t feel so alone. 

I don’t want to pit diagnoses against each other as I loathe the Oppression Olympics. But, menopause, while Isn’t an illness, has a huge impact on the body and the mind. Ichthyosis can mean excruciating pain and also infections can be deadly. And this type of cancer, if I have it, may cause me to die prematurely. But I also know that there are huge advancements in medicine and I may survive it, if it’s cancer. It’s a lot. 

It’s complex. I am hoping it’s not cancer, and that my body can go through menopause in its own time. And I’m hoping to feel well again.

If it is cancer, I’ll take it step by step with the medical team, Adam, my parents and friends and colleagues, just as I have been doing for the last four weeks. 

If my writing has helped you or made you think differently about disability, you can buy me a drink. Thanks!

The post How am I feeling ahead of my hysterectomy? It’s complicated. first appeared on Carly Findlay.

Thanks from me and my c-uterus!

Thank you from me and my c-uterus!

Since I posted about my health and needing a hysterectomy on Wednesday night, I’ve felt so loved. The comments and messages and offers of help have been heartwarming. I feel very supported, and less anxious about impending surgery. I was hesitant about how much to share, but what I have shared has meant I’ve received lots of reassurance about the procedure and also the great care at the hospital, and a few people have thanked me for talking about my symptoms as they’ve experienced the same. The response I received reminded me of all the good things about social media – which is much needed in these dark times. Of course, the very good preparatory appointments I’ve had at The Women’s have helped too.

I had a meeting in at the Queen Victoria Women’s Centre today and afterward, I went into the shop to browse. How could I resist buying this plush toy uterus and an ovary pin, to bid farewell to and thank mine! It’s given me 29 years of mostly pain free periods. I’m regretting only discovering period undies five years ago, because they’ve made my periods so much easier. I expect this c-uterus will provide some comfort and laughs while I’m in hospital.

This plushy is by Body Buddies, which helps educate children and diverse communities about organ transplants, and proceeds from sales go to Transplant Australia. Such a great cause.

PS: still not inviting advice or intrusive questions, thanks.

Disclosure: I used the Melbourne filter on this photo as the light was poor on the shortest day of the year. The filter hasn’t changed my skin colour much.

Image: Carly, a woman with a red face and short dark curly hair, wearing a colourful puffer jacket, smiling, standing near a mural featuring diverse women’s faces. She’s holding a plush toy – it’s a pink uterus.

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An update about my health

I am not so well right now, and soon I am going to hospital to have surgery.

On the day I arrived back in Australia after my travels to South Africa and France, I went straight to hospital with severe stomach pain and swelling. Tests showed that I have a large ovarian cyst, also known as an ovarian mass. 

I am having surgery to both remove the cyst for symptom control, and also to determine what it is – whether it’s malignant or benign. The surgeons will also remove most or all of my reproductive organs – depending on if there is cancer. 

I’m rejoicing that I can say goodbye to my periods though! Just recently I was wishing for my periods to end – knowing I have that power, I am wishing for world peace. 

It has been a shock and a lot of information and options to process, even though I’ve been experiencing symptoms for the last five or six months. Unfortunately many of them are bowel symptoms which I had no idea were linked to ovarian cysts until I went into hospital. I’ve lost weight. I’ve felt full quickly and have lost my appetite – which has been the hardest to manage as a foodie. Before I went to hospital a few weeks ago, I was going to the toilet many times a day, but that’s stopped since one of the medical tests. Currently I have swelling and pain, and I’m quite tired. My skin was very sore for a couple of weeks after hospital, but is feeling much better now.

So this means right now I am working as much as I can, doing medical admin, and I have a long recovery period ahead of me. I ask that all work requests are directed to my agent, Danielle Binks (danielle at jacintadinmase.com.au). When I’m up to doing speaking events, I prefer they are online for the next little while. If you have a question about disability access or representation or my work, check out my books or my blog or scroll back through my socials – or google it. I can’t share your stuff or reply to every message. I ask that you respect these boundaries. 

Please no wellness suggestions – crystals, yoga, herbs, diet etc. I am in great hands with the medical professionals at The Women’s, who are consulting with my dermatology team at the Royal Melbourne; as well as the support from my friends and family. I feel very grateful to be given such good care. Please also no intrusive questions.

I’m just focusing on my health – and that means trying to become good at watching trashy TV, playing with fashion, gentle cooking and doing Lego. You may see me pop up online occasionally, but I expect it will be posts reminiscing about my overseas trip, and also outfit posts. I will try to rest as much possible.

Thanks for your support and love during this difficult time. 

If my work throughout the years has helped you, if you use it in your work, I have a PayPal and a Patreon. Thank you.

Image: Carly, a woman with a red face, short dark curly hair, smiling, standing near a concrete wall. She’s wearing a green jacket over a pink floral dress, and pink boots.

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