Can you tell us a little about yourself?
I grew up on the Kapiti Coast, but have lived in Auckland for the last 4.5 years. Prior to my cancer becoming advanced/terminal I worked in legal tech, now I am enjoying retirement at 28 years old. For me that has looked like travelling and spending quality time/making memories with my loved ones where I can – I have been very fortunate to be able to tick off most of my bucket list. And more recently, catching up with friends over brunch or dinner, going out on walks with my puppy, Maple, or squeezing in a hot Pilates class where I can on my good weeks before chemo infusions.
How did your sarcoma journey begin?
In March 2021 I was looking in a full length mirror when I noticed the back of my left thigh looked a little larger than my right. I didn’t have any other symptoms, so I left it for a few weeks. I thought it was probably just a gym injury (even though we were in a lockdown and I hadn’t been to the gym in weeks), a cyst, and even tried to convince myself my muscle on that side was just bigger from years of driving manual and sitting on the clutch. I iced it and applied heat packs and it didn’t go away, and eventually when I would cross my legs I’d get pins and needles down the left leg, so I finally went to the GP to have it checked out.
What was the experience of being diagnosed like for you?
I feel like I had two different experiences/diagnoses.
In 2021 when I was first diagnosed it was surreal. You truly don’t expect that Dr Google was right and to hear you do in fact have cancer at 24 years old. The initial testing period was the scariest part. I went to my GP, and the same day went and got an xray. The following morning I had an ultrasound and then was asked to go to the hospital for further testing straight away. There were a lot of tests over many days in hospital – X-rays, ultrasounds, blood tests, MRIs, CTs – and everything happened very quickly but at the same time it felt like forever waiting for the results. After I was discharged from hospital I was told I’d probably hear back in two Thursday’s after the sarcoma MDM, but got a call that Thursday to confirm it was Myxoid Liposarcoma. It was a whirlwind of just putting one foot in front of the other and trusting the treatment plan that Andy and the team laid out for me – 25 rounds of radiation followed by surgery. From diagnosis to surgical resection, and subsequent remission, was a total of only 3 months.
In June 2023 I found metastasis, but we were still treating for cure until the end of Dec 2023/Jan 2024 when it had continued to metastasise to the point of being no longer curable and I was referred through to medical oncology for palliative chemotherapy. I say this felt like another diagnosis because at this point my primary oncologist changed along with the treatment aim – it went from going after it aggressively to now managing it in a way that will ideally prolong my life while also taking into account my quality of life. This side of things has felt less like one foot in front of the other and more collaborative in a sense of having many different options laid out before me and me being able to choose what’s best for me at the time – for example, I was able to choose to delay chemo for a little bit initially so that I could travel and hit my bucket list while looking and feeling like myself. And I’m still here 1.5 years on from being diagnosed as advanced/terminal, so I’m incredibly grateful to have had Joanna, Andy, and the rest of the wonderful North Island sarcoma team looking after me.
What kind of treatment have you had so far, and how have you been finding it?
Radiation and SABR: I found it generally tolerable until the last couple of days when the radiation burn breaks out. I thought the crevice of the knee was a bad place to have radiation burn until I had to have radiation on the metastasis in my “proximal thigh” (butt cheek, if you will). Radiation is pretty targeted but sometimes there is spill over and sometimes it just happens to be in crevices that you would absolutely not want a radiation burn in, and sometimes it then causes a fissure. In the 4+ years of cancer treatment that is the thing that caused me the worst pain and was also the side effect no one warned me about – so just throwing that in for anyone else who may be having radiation around that area.
I also gained enough radiation tattoos to form a connect-the-dots picture now. Enjoyed how quick these appointments were and that they blasted Taylor swift for me over the speakers.
Rating: 7/10 in areas not near “proximal thigh”. Did not get any burn from SABR and it has kept my bone mets stable.
Surgery: I have had three of these now.
The first was the limb sparing surgery for my first tumour behind my knee. This was the longest one to recover from due to the nature of having a radiated knee and scar tissue. Physio really helped with this, and my leg function is largely back to what it was pre-cancer.
Second was surgery to remove most of the left lobe of my liver which contained three tumours. They took a bonus organ while they were in there – my gallbladder. I was surprised at how quickly I bounced back after this, I felt mostly normal after about a week.
Third was the resection of the butt cheek tumour, which was superficial in the fat so that surgery/recovery was a piece of cake, and by this point I was a surgery pro.
Rating: 6/10 – but only because the hospital food is terrible and you get woken up in the middle of the night for obs. Also a hot tip – don’t google the position you were in for surgery.
Chemo: I’m on my second line of palliative chemo right now. Last year I did 6 cycles of doxorubicin (AKA the red devil), and am currently receiving my fourth cycle of Trabectedin. One cycle for both chemos is 3 weeks, with the infusion on day 1, and both have given me similar side effects. It knocks me for the first week, leaving me with two good weeks before the next infusion – mainly nausea, fatigue, headaches, and body aches from the pegfilgrastim injection. Oh and doxorubicin made my hair fall out too, which was less than ideal.
Rating: -100/10 because nausea is the worst feeling in the world in my opinion.
Who or what has helped support you through this time?
I have such a great support system.
Family and friends who are there for all of the day to day needs and emotional support.
Kind humans in my community, such as my hairdresser who always offers to have me in for a wash and dry before I go in for surgeries, buzzed my hair off for me pre chemo, and has helped me figure out how to style and cut it as it grows back in as a chemo curl mullet. Or a lovely lash tech who offered to have me in for regular lash tints after chemo to help me feel pampered.
Random strangers on the internet – I’ve connected with a few people my age over social media who are going through similar things – whether that be the same cancer, or a different cancer with the same prognosis, or a different cancer but going through the same treatment. Having cancer and everything that entails is something that’s only really truly understood by others who have experienced it, so it’s really nice to find some of those people to be able to chat with who get it. Especially those around my age and stage of life because they can be pretty far and few between when you have a rare cancer in a small country.
What have been some of the biggest challenges for you?
I think largely how different and unsafe I have felt within my body. I have never really had any pain or symptoms from my cancer, which I am grateful for, but at the same time have felt like my body is silently betraying me by allowing my cells to mutate and try to kill me, despite every effort to try and stop it.
The physical changes, too. Losing my hair was a big one. I didn’t think it would be going into it, I had an “it’s just hair, it’ll grow back” mentality. I didn’t realise how much of my identity and femininity I had attached to it, and how long it would take to grow back. I was also able to get by without looking sick before that, which was ideal for me as someone who doesn’t like to stand out. So going out and looking sick, receiving pity stares, etc was an adjustment.
Alongside the scars from surgeries, the weight gain and moon face from the steroids and medical menopause and chemo – it can all knock your confidence a little.
Oh, and I guess accepting that I am dying at 28 has been a hard pill to swallow, too.
What has helped you cope or find strength on tough days?
I see a health psychologist with the cancer support team at Auckland Hospital on a regular basis. She has been a super helpful safe space for me to have a cry, blurt out all of the hard feelings and helps me work through them/given me tools to do so.
Humour/Dark humour is one of my favourite coping mechanisms – I largely indulge in this on @thecancerpatient meme page.
My friends! They are the best and remind me what life is all about. I love catching up with them and just doing/talking about normal things. They also hold space for me and support me through all the thoughts and emotions that come with having cancer too.
Is there anything you wish others knew about living with sarcoma?
Something Andy said to me on the day I was diagnosed that has stuck with me is “It’s not because you ate too many chippies, it’s just dumb luck”.
That’s helped me to understand it’s not my fault, I didn’t do anything to cause it, it truly is just the terrible hand life has dealt me. It’s not fair or easy, but accepting that and finding moments of joy or humour can help get you through.
What do you want your story to say?
I always aim to show the reality of what having terminal cancer as a young person is like with a heavy dose of dark humour. I talk about it so much and so openly because one of the first things I did when I was diagnosed was to try and find and connect with other people going through the same thing. Whether that was just so I could be aware of what was coming next/what treatment might bring, to see if what I’m experiencing or feeling is normal, or initially to offer hope to my situation. I want to do that for other people in my situation. My cancer is rare and people and information were hard to come by, so if I can help even one person by oversharing on the internet then I will. I talk about the raw reality and the things I wasn’t warned about, such as how radiation burn in your anus can cause a really painful fissure, or how having cancer can cause a lot of strain on some of your relationships.
I also want my story to raise awareness. Sarcoma came into my life when I was 24 with no pain and no symptoms other than a lump in my thigh, and it’s what will take my life from me. I would love to not see this be anyone else’s reality.