International Women’s Day 2024

My name is Kaela.

I am a Mother, nurse and veteran. I was first diagnosed with synovial sarcoma in February 2020. At that time, I had just finished working in oncology and thought I had a sports injury to my right thigh, however after multiple scans – it was made apparent it was much more serious. I heard those words ‘you have cancer’ … A very rare cancer at that, even as an oncology nurse it was one that I had never heard of. I was diagnosed with stage 3 Synovial Sarcoma.

I then had emergency surgery to remove the tumour that was almost wrapping around my femoral artery.

This was followed by :
Portacath insertion (surgery no2)
40 rounds of the harshest IV chemotherapy anyone can receive (ifosfomide and doxorubicin) – to which I suffered many complications, including grade 4 chemo toxicity, grade 3 mouth ulcers, pericardial effusion, myocardial effusion, febrile neutropenia requiring hospital admissions after all bar two chemotherapy rounds, extreme fatigue, and significant weight loss down to 47kgs.
2 months of radiation therapy 5 days a week (sustaining localised burns and fatigue) I was then “cancer free” for almost two years. I was monitored closely and alternated between a PET scan and CT scan every 3 months. I was on my last scan before they were going to stretch my scans to 6 monthly ….. when I relapsed with bilateral lung metastasis.

I then underwent:
Right side VATS surgery to remove the visible tumours with a wedge resection (surgery no3)
I commenced a different IV chemotherapy (gemcitabine and docetaxael) however this was unsuccessful as when I was scanned 3 months post op, my tumours were already back.

After these findings, I was told I am now inoperable and began an oral chemotherapy called Pazopanib (votrient) to which I take every single day. I heavily advocated for myself to have more surgery – just to try (especially given the genetic testing showed no clinical trials were a match). After pleading my case and advocating to my multidisciplinary team about wanting more surgery (given my healthcare knowledge really helped here) – I was told if I take pazopanib for 3 months and it keeps the tumours stable, that they would consider operating. My 3 monthly scans showed the pazopanib was effective, I begged for surgery once again and they listened. I then had:
Left side VATS surgery (surgery no4) to remove the sole tumour via a wedge resection.
Right side thoracotomy (surgery no5) with lower lobectomy (resulting in a 5 night ICU stay as my left lung collapsed and I required an extra drain for support).

Since then I have continued taking my oral chemo every day and will do until told otherwise. My last scan at the beginning of 2024 showed no evidence of disease. I now work as a nurse in the emergency department. One of my biggest passions is raising awareness for sarcoma. I also love educating about clinical situations relating to oncology and advocating, given my unique experience of being a cancer patient as well as an oncology nurse and now an emergency nurse – which is why I started my Instagram account called Sorareity, where people can hear about my story, education about sarcoma and oncology related conditions as well as finding a community they feel safe in.

The Dr Matthew Fisher Sarcoma Research Fund

Tuesday 27 February was a very special day for the friends and family of Dr Matthew Fisher, a day when Dr Maya Kansara from the Garvan Institute of Medical Research presented the preliminary findings of the IL23 sarcoma sub study at a hybrid  event attended by 110 international and local guests. 

It was particularly touching to have the Canberra Sarcoma MDT take time out of their busy schedules to attend the function, with Matt’s oncologist A/Professor Paul Craft attending in person and Ms Amber Wilson, the Sarcoma Specialist Nurse dialling in. 

The sarcoma research  fund bearing Matt’s name had significantly contributed to funding the IL23 trial through CRBF.

Matt was first and foremost a doting husband to wife Naomi,  and a much loved  father to Vivienne and Sylvie.  He was also  an avid sailor, a culinary expert, and a passionate and highly talented scientist working with the government agency, IP Australia.

It was Matt’s colleagues at IP Australia who arranged a GoFundMe page to raise funds for he and his family after his shock diagnosis with rhabdomyosarcoma..  Matt however was adamant this funds be directed to clinical research for sarcoma, and within a short space of time a remarkable $100k had been amassed by family, friends and his colleagues at IP Australia.  

This outstanding result included a $30k donation from the family and friends of Alex Rodham  who was diagnosed with soft tissue sarcoma, and passed away one month after Matt,  Alex’s family from Bungendore, were determined to raise funds for others experiencing adversity in their community and to improve the lives of those living with sarcoma. The fund was also significantly supported by the Minty family from Canberra whose son Zac had also been diagnosed with sarcoma.  

As we continue to honour Matt’s legacy, let’s pledge to keep his passion alive and strive towards a future where sarcoma becomes a treatable cancer.   This incredible achievement is a beacon of hope for those living with this disease and a testament to the power of loved ones and an amazing community.

Matt’s family will continue to raise money for his fund when the opportunity arises. His parents recently topped up the fund to make it $100,000, and Naomi’s cousin, Louisa shaved her hair in October 2022 and raised almost $5000 for her efforts.

Special thanks to:

Dr Maya Kansara for the wonderful and insightful presentation.

Ms Kylie Bryant for the beautiful introduction and for her flawless work as MC for the event

Cassandra Mitchell and her team at IP Australia for event and venue organisation and Cassandra for closing the presentation

Senior Executives at IP Australia for supporting the event

IT and event support team at IP Australia

Associate Professor Paul Craft and Ms Amber Wilson from the Sarcoma MDT, The Canberra Hospital

The Minty family from Bricks and Smiles, The Zac Minty Legacy Project

Dr Mariana Sousa

Matt and Naomi‘s family, friends and colleagues, some travelling from interstate