Carly Findlay's Blog, page 8

Second round of chemo done – surrounded by friends

I had my second round of chemo yesterday – a changed dose, and a week extra break between doses. They have removed one drug entirely. I’m still nervous, but hopeful.

Earlier this month, I wrote that I had a very severe reaction to the first round of chemo – my skin in particular. My skin shed in large pieces. All my energy was used up having a shower and walking back to bed. It was the most severe pain I’ve ever had, lasting for more than a week, and the oncologists had never seen a case like mine before.

I’m grateful the oncologists have listened to me and took such swift action in getting me stronger painkillers, access to an occupational therapist, and worked with my dermatologists on a new path. And I’m grateful they’ve also talked about options if this dose of chemo doesn’t work. Care at the Peter Mac – along with the Royal Melbourne and Royal Women’s hospitals – has been impeccable. I’m very lucky.

My Mum has been coming to Melbourne a lot lately. She had a break this round, and so I had four friends come to support me. Danielle, Sandy,, Jodee and Natalia. They held my hand while I had needles (I’m doing much better with my needle phobia), brought me snacks and gifts, and made me laugh. I am so lucky to have such a beautiful circle of friends looking after me. I love them. And I love the support that my followers have given me. Thank you.

Last week I wrote on my socials that I am having difficulty accessing the Centrelink system, and I’m working significantly less hours and earning much less due to the cancer and the impact chemo has had on me. If you want and are able to, I have a PayPal that you can donate to – money will go to living expenses. Thank you – and no pressure. There’s a link here – it’s paypal.me/CarlyFindlay

Images: 1. Carly in the treatment ward, surrounded by Danielle, Sandy and Jodee. 2. Sandy and Carly. 3. Danielle and Carly. 4. Natalia and Carly. 5. Carly in the treatment chair – wearing bright clothes, a blue hat by Anita, Hello Kitty brooches, and a colourful crocheted blanket by Friday. A towel covers her cannula.

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An unintentional weight loss photo collage that indicates a symptom of ovarian cancer

CW: weight talk, shape, size, BMI, weight loss, surgery, cancer

This isn’t an intentional weight loss photo collage. This shows how much weight I’ve lost, and how my shape has changed, because of ovarian cancer. The left pic is from April 2021, the right is from today. It’s the same Oneteaspoon jumpsuitt, in size medium.

I don’t feel sick from the cancer, but the symptoms like rapid weight loss, loss of appetite, diarrhoea, heartburn, feeling full quickly, abdominal swelling and pain, and more were very inconvenient. (All symptoms other than the weight loss have gone for me, since the tests for ovarian cancer and hysterectomy.) I didn’t weigh myself prior to my diagnosis, so I don’t know how many kg I’ve lost, I can only tell by the photos. I have to weigh myself every fortnight now, and also before chemo.

It’s hard to talk about weight loss and changes in body shape and size when you have thin privilege. I’m trying to get used to my new, less curvy body. I’ve been a busty 10-12 for many years, and I regularly wear a uniform of baggy smock dresses. Now my body is very straight up and down, I don’t recognise it. I have many pairs of pyjamas that literally fall off me when I walk. I disguise baggier dresses with blazers. My boobs are still there, just much smaller.

Over many months, I tried to get answers about my bowel symptoms. Nothing came up for bowel diseases. And it was only when I was asked about all the symptoms collectively, at 4.00 am the morning after I flew in from France, that I learnt that I probably had ovarian cancer.

Read the symptoms on the Cancer Council website.

“How much weight have you lost?”, the gynaecologist asked me? I couldn’t tell him but I could show him photos from six months. He nodded. About a year earlier, a GP I’d seen when my regular one was away urged me to lose weight as he told me “my BMI was bordering on morbidly obese”. I was furious.

Of course, it’s not great to congratulate people about their weight loss at any time. It’s especially not great if it’s a result of illness. And it’s equally not great to comment on weight gain – especially if it’s the result of illness or medication. 

I love this purple jumpsuit but I feel like I look like a little kid playing dress ups. I’ll get used to this new body and shape soon.

I’ve been eating as well as I can lately. I’m definitely open to home-baked cakes and pies!

Image: two photos of Carly, side by side. She’s wearing a purple jumpsuit, smiling. On the left the jumpsuit is snug. On the right, it’s baggy.

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Three months since it all changed

Today (25 August) is three months since Jeanette Findlay and I flew home from a seven week trip to South Africa and France. We talk about the great times we had and the wonderful people we met daily, and how lucky we travelled before I knew that I had a cancerous tumour. The trip was life changing in many ways.

In South Africa, I met so many of my South African family; I saw where Mum grew up; I heard from her friends and family just how hard apartheid was, how they protected my parents’ illegal relationship, as well as what Mum’s life was like before I was born; I learned so much about South Africa’s history; and I met with some disabled people there. And we had fun doing all of the fun touristy things – safaris, food tour, Table Mountain and more.

In France, I was lucky to experience the Avène thermal springs hydrotherapy centre. It is situated very far away from big towns, and there was a lot of hydrotherapy and food each day, so Mum and I got to rest a lot after packing in so much each day in South Africa. We made some good friends at Avène, like we did in South Africa. The thermal water was so beneficial for my skin – the stay prepared me for difficult times ahead.

I had symptoms of ovarian cancer throughout our trip. I wasn’t really sick – it waa just inconvenient not being able to eat as much as I wanted to, and I went to the toilet a lot.( I had almost six months of constant diarrhoea – I had multiple tests for bowel issues prior to the trip but nothing suspicious came up.)

And then on the flights home, everything changed. My stomach was swollen and very sore. I showered at Singapore airport. I had bad tummy troubles, and my period, and so I had bad cramping. I couldn’t breathe without pain. I couldn’t bend over to put my socks and shoes on. It was hard to get comfortable on that last flight home, as I was in a lot of pain.

I thought I may have hurt myself lugging my very heavy suitcase. (The airline staff at Montpellier said my suitcase was “forbidden” – meaning it was too heavy.) Or it could have been the way I was sitting and sleeping in a seemingly very narrow plane seat. Also, it was 30 hours of flying and in airports, and I wore my mask for a good portion of that, which was making it even harder to breathe.

We landed in Melbourne at 5.30 am on 27 May, and a staff member with a wheelchair met me as I got off the plane. Getting through customs was quick due to being in a wheelchair. My Roquefort cheese didn’t have to be thrown out!

I got home at 7.00 am, Mum ensuring I was not lifting my heavy case, had a shower and a little sleep, and called the GP as soon as the clinic opened at 9.00 am. I made an appointment for 2.00 pm. I didn’t sleep or eat much in the day, I was still experiencing pain.

The GP saw me and thought I had sepsis in my stomach. So he wrote a letter of urgency for Emergency, and told me to call Adam to take me straight to hospital.

That letter from the GP did not influence the wait time – it was five hours before I got a bed in Emergency.

Because I had returned from South Africa and France, I was classified as an isolated patient due to risk of communicable diseases – and this marker will stay for a year, meaning I get a private room if I need to stay in hospital again.

Adam went home to pack a bag for me. A friend drove my car from the doctor’s clinic to her house.

The Emergency nurses told me more boood tests were needed, and that they will be testing for cancer. I had a CT Scan at midnight. I was not sleeping in Emergency due to the noise and lights.

At 4.00 am, a gynaecologist came to me, and asked me my family history of cancer. He said I have a large tumour in my stomach. He said all the bowel symptoms I’ve had could be ovarian cancer. Four in the morning is not a good time for any conversation, especially not one about potentially having cancer.

At 5.00 am, almost 24 hours after landing in Melbourne, I was moved form Royal Melbourne’s Emergency to the Royal Women’s. I finally got some sleep there.

I saw more doctors in the day, they informed me I may have ovarian cancer, but the tests they had done came back inconclusive. I stayed in hospital another night. The stomach pain and diarrhoea decreased significantly after I had a test that involved a needle in my stomach, which drained some fluids.

Thanks to that short hospital stay, jetlag surpassed me.

And then I had more appointments with gynaecological surgeons, who told me I need a hysterectomy- it’s the only other way they could test for ovarian cancer, following the previous tests. They said during surgery, the tumour would be removed.

It waa an urgent, yet not rushed response. The doctors and nurses have been so great from the very beginning.

A month after that I had surgery and was diagnosed with ovarian and endometrial cancers. They did a hysterectomy, and removed a 25 cm tumour, plus a smaller one. I don’t know where it fit.

And a month after that, I commenced chemotherapy, after I was transferred to the Peter Mac Cancer Centre. It is reassuring that the dermatologists, gynaecologists and oncologists are working together to treat me, as theres so little known about the impacts of cancer and chemotherapy. I’ve done a pot of self advocating. But it’s too much to comprehend all at once.

The trip overseas was life changing – I feel so much more educated and connected to my family. My skin is still doing pretty good thanks to the thermal water which I spray on at home (apart from the two weeks of hell post chemo). I can’t wait to write about my trip more when I have the energy.

Arriving home, my life changed too. Every single day has been about cancer. My work and earning capacity has reduced. I’ve lost weight and don’t recognise my body. I’ve had the worst skin pain in my life after chemotherapy. I’ve asked doctors if I am going to die several times. I am in early menopause but managing that comes second to treating the cancer. Ivr had many needles – proud of myself for getting through the needles with difficulty in finding a vein and bad needle phobia. I’ve navigated the Centrelink system for the first time. I’ve been in bed a lot. I’ve not been myself.

But in these three months, people have rallied – my parents, Adam, friends and colleagues – all showing such love and support. I’ve gotten better at asking for help. We’ve had lots vouchers to help with meals and laundry. I have received lots of presents and a few cakes, plus letters in the mail and phone calls from people I’ve not heard from in a long time. I feel very loved and grateful for having so many wonderful people in my life.

Mum often says she wonders if we would have gone on the trip if I’d known I have cancer? Probably not. I was so lucky to have experienced travelling before my life changed so much. Mum and I have spent so much time together recently – overseas and now in hospital and at home. Mum and Dad have always been pretty stoic, get on with it type people. It’s rare they show me signs of them being worried for me. But I see their worries and fears for me now. I said to Mum that I don’t want her and Dad’s life to be impacted so much by my cancer. She said her life is about being a mother to me.

Mum and talk every day, always making sure to remind ourselves of what a brilliant time we had before it all changed. And we talk about how when I’m recovered, we will go on another trip.

Image: Carly and Jeanette at Cape Town airport, signage behind them says “Welcome to the mother city”.

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Joining the Babes with Mobility Aids club

I am now a babe with a mobility aid!

My disability is dynamic – that is, my functionality can change depending on the severity of my Ichthyosis and also physical and attitudinal barriers I face.

My body’s reaction to the chemotherapy has meant it’s been hard for me to stand, walk and wear shoes; and do anything with my hands. So I’ve been using some mobility aids and accessibility tools.

Here’s a few aids and tools I’ve bought and was given recently – they’ve made it easier for me.

To take the load off my feet:

Fold up wheelchair (so I can get outside of the house while I’m not able to walk long distances)
Shower stool (to sit on in the shower)
Crocs (to be worn with thick, fluffy socks)

To protect my hands:

Cotton gloves (because the skin on my hands is so raw
Tablet dispenser (because tablets are really hard to get out of their foil packs while I have sore hands)

Mobility aids and accessibility tools don’t mean you are giving up. They can make it easier to move and do tasks, enabling easier participation at home and in the community. Don’t worry about what other people think when you’re using them, or that using them gives away that you’re disabled. Coming to the realisation that you need access provisions and tools to make your life easier can be liberating.

Being a part of the disability community and seeing the many ways my disabled friends and colleagues use mobility aids and accessibility tools has meant I have no shame needing to use them too.

What mobility aids and/or accessibility tools have you found make your life easier?

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Images: 1. Carly, rugged up in a wheelchair, holding an ice cream. 2. A blue and white shower stool in the shower. 3. Blue Crocs and thick striped socks. 4. White cotton gloves. 5. A blue and clear plastic tablet dispenser.

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Breathing through the pain

I wouldn’t have predicted that losing my hair would be the brightest part of my week.

But here we are.

This has been one of the hardest weeks of my life – I’ve experienced unprecedented pain levels in my skin. It was a reaction to the chemotherapy.

My hands and feet have been impacted the most, and so it’s been very hard to do anything involving my hands, and even harder to stand, walk or have shoes on. I’ve not been able to do a lot for myself, and the things I have been able to do take extra long as I’m breathing through the pain. Two showers a day took all of my daily energy – I praised myself when I managed to put on socks. 

Every moment has been focused on the pain. It’s been exhausting, and really frightening. It’s had a huge impact on my mental health, too.

Of course, song lyrics hold great meaning for me. There’s a line in Darren Hayes’ Poison Blood that goes “And it’s not that I don’t want to live, it’s the pain that I wish I could kill”. Skin pain permeates so deeply, that’s how I’ve felt on the most painful days. Please know I am safe, I have mental health support in addition to medical care, I am loved, and I am here.

Thankfully the pain is being managed better now, and I’m improving – slowly. I have a new path forward for chemotherapy. And I have a few tools that help me be more mobile and do things more comfortably – a shower chair, fold up wheelchair and lots of cotton gloves and fluffy socks. But it’s going to be a while before my body feels like my level of normal again.

So many people have rallied for me, and I’m very grateful. I know it’s been hard for them to see me this way, and it’s hard for me to show my vulnerability and ask for help.

Yesterday my hair started coming out in big tufts. And I quite like the new look. Of course, dopamine dressing has made me feel a little better, too.

I was able to go out for fun today – not just to the hospital. I’m glad to see the sunshine again.

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Lifeline: 131114

Images: Carly, a woman with a red face and patchy curly hair with bald spots on her scalp. She’s wearing a bright pink tracksuit with “# 1 dreamer” appliquéd in different colours on the top, and a white stripe on the pants. In the third photo she is wearing a red and pink heart print hat and pink and red heart pink fluffy jacket. She has Care Bear brooches on. Her hands are in her pockets and she’s smiling, standing near a green hedge.

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The worst pain

I hate that my social media has become a cancer diary, and that cancer is all I think about, talk about and feel right now. When I write about Ichthyosis, I am very deliberate to share the social barriers encountered, like discrimination, bullying, exclusion and violence; and I advocate for equal rights, accessibility, representation and inclusion. I’m used to living with a rare severe skin condition, to choosing treatments that give me a quality of life, and to living the very best life I can while still experiencing pain and discrimination.

Leading up to diagnosis, I had a lot of symptoms that didn’t make me feel unwell, but were inconvenient. There was some pain close to surgery but it was manageable. After I had a hysterectomy and the tumours were removed (one was 25 cm!) and I had recovered from surgery, I felt quite well. My worst fear was that chemo would make me feel worse.

It is a week and two days since I’ve had chemo and I am experiencing the most pain I’ve ever felt. My skin is in agony. There’s not a lot that can be done in hospital for my skin so I’m doing all I can to ease it at home. But it’s agony to lshower, to walk, to dress and even to lie in bed. I’ve not been out in days. I am reliant on Adam and friends and family. It’s so hard.

I will talk to the doctors about how the next round of chemo can be tweaked to make it easier on me. Its hard because there is literally no research on how chemo affects ichthyosis – and i guess I’ll be the trailblazer by default.

I’m exhausted and just want to live life like I was doing in the first half of the year – doing ordinary and extraordinary things and my pain levels being low.

The best thing to come out of this shituarion is the kindness of so many friends and strangers. It’s breathtaking. Today a friend who I am connected with on Facebook but haven’t seen for more than 20 years sent me a message saying she lives near me, she’s coming over, how can she help? She helped out, and we had an hour long chat about her incredible family. Thank you for making me feel less alone and so well supported.

Please no advice, horror stories or woo woo in the comments.

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Image: a Facebook post from me. It reads: “I don’t understand how the treatment for cancer can make people feel worse than the cancer itself. It isn’t fair.”

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Pre-emptive haircut

I got a haircut – it’s very short!

I’ve written a lot about how hard it’s been to grow my hair, because one trait of the Ichthyosis I have (Netherton’s Syndrome) is brittle hair. As a child and young adult especially, it was very slow to grow, and broke off at the scalp. I had patches and sore spots on my scalp for years.

I cut out using shampoos with sodium laurel sulfate, and started to adopt the curly girl method – conditioning more than I wash. I use a silicone scalp brush and fine tooth comb in the shower to remove the scale on my scalp. I let my hair air dry and occasionally dry it with a hairdryer and diffuser. I sometimes use gels, oils and creams to style it but mostly there’s no product in it. All of this has led to much thicker, healthier, longer and stronger hair, and a calm scalp. My hair has recently been below my shoulders, which is a record for me!

When I was told that my hair will fall out from the chemo, I was scared. Not about how I’ll look, because I’ll always be proud pf my visibly different appearance – and lots of people with Ichthyosis are bald or have sparse hair, and they rock it. I was scared of how my scalp will feel and heal, and how long it will take for my hair to grow back. And I didn’t want it to fall out in long strands, reminding me of how long it’s taken me to grow it.

So I took control and got a short haircut – the shortest it’s been in many, many years. I love it, especially my curly fringe.

Maddy at Earth to Betty always makes me feel great when I get a haircut – yesterday was no exception.

Adam said he’s never seen my hair this short!

I know it will fall out soon, but now it will be a little easier to manage.

Images: 1. Carly, a woman with a red face and short dark curly hair, wearing a black dress with colourful spotted dress, and yellow and purple spotted scarf, with a blue fish brooch pinned on to her scarf, and brown slippers. She’s standing near a brick wall smiling. 2. Carly near a pink wall in the hairdressers, wearing a mask and a neon leafy print puffer jacket over her dress and scarf. 3. A collage of four photos showing my hair getting shorter in the hairdresser chair and near the pink wall.

 

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Day one chemotherapy thoughts – Thursday 1 August 2024:

Day one chemotherapy thoughts – Thursday 1 August 2024:

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.

(PS: Steroid vs sleep update: I slept. I slept so deeply I couldn’t recall what day it is when I woke up.)

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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#HospitalGlam

#HospitalGlam is a social media self advocacy movement started by Karolyn Gehrig (@karolynprg).

From an article about HospitalGlam in HuffPost in 2015: “Gehrig’s images show what her day-to-day life of chronic illness is like, conveying strength in the face of her treatments.
“I began using some conventions of fashion photography to strip away ambiguity about my viewpoint and make it clear that I retain every part of myself through this battle,” Gehrig told HuffPost. “I’m very excited to see how we can move forward and work on destigmatizing illness en masse.”

Dopamine dressing is a key part of who I am, and I want to keep that part of me even when things are uncertain and difficult.

On Wednesday, for my nuclear medicine test, I wore Pete Cromer x Erstwilder’s seahorse and mermaid brooches, accentuating an already bright dress and coat, for a big hospital day. It’s nice to wear some beautiful art while doing hard things.

A wonderful artist has illustrated me on instagram – thank you Sophia! 

Brooches are Pete Cromer x Erstwilder, dress is Variety Hour, beanie is Sportsgorl, coat is Gorman.

Images: 1. Carly, a woman with red skin, wearing a green, orange, blue and pink check coat over a colourful green based floral dress and mint green beanie. A pink seahorse brooch is pinned to her beanie, and a green and purple mermaid brooch is on her coat’s lapel. She’s smiling underneath her mask, sitting in a red pathology chair. 2. An illustration of this photo by Sophia. 

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Thankful for my team

Thank you to my Mum, Danielle and Sandy for supporting me today – you’re excellent hand holders, gift givers and pork crackling suppliers.

And thank you to everyone who’s rallied for me in so many ways. My friends, parents, Adam, workplaces, social media communities and medical team – I love you, and you’ve made me feel very loved and supported.

Wednesday involved four appointments and needles before I commence chemo tomorrow. I cried at the needles, and at the enormity of this situation.

It is scary but I know I’m in the best of care. We are so very lucky to have such excellent public hospitals in Melbourne. This morning I thought, just over a month ago I was about to have surgery and I got through it. The same will happen with chemo.

(And I’ll do my best to maintain dopamine dressing every day of my treatment.)

Images: 1. A selfie of Daniele, Carly, Sandy and Jeanette – all wearing masks. 2. Carly and Danielle at a table, both wearing beanies. 3. Danielle, Carly and Sandy. 4. Danielle and Carly.

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