1. Can you tell us a little about yourself?
My name is Athena! I am of Sri Lankan and Indian descent, and was born in Auckland on the beautiful North Shore. I work in learning support at a local High School, and am completing my Master of Educational and Developmental Psychology. I enjoy travelling, watching sunsets, stargazing, cooking, going for walks but most of all, I love supporting young people.
2. How did your sarcoma journey begin?
In 2021, I felt a sharp pain in my leg, which I associated with a possible gym injury. I went to my local physio, had a couple of scans, and received a diagnosis for a hip abnormality. I saw two hip surgeons who were unsure as to why I felt the pain but suggested I undertake some physical rehabilitation. I did this for about two years, then when I realised that pain wasn’t getting any better, I decided to go back to the gym but took on activities such as yoga, cycle classes, and pilates rather than lifting weights. A couple years down the track, I decided to see an osteopath, who suggested I get updated scans. This is when the sonographer noticed something unusual close to my femoral artery. After several more scans, seeing a neurosurgeon and a vascular surgeon, I was referred to the legendary Dr. Andy Johnston who insisted I have a biopsy, bringing us to March of 2025.
3. What was the experience of being diagnosed like for you?
Seeing that my journey to diagnosis was a long and complicated one, I was simply shocked. I had recently been supporting a family member with cancer so I couldn’t believe I was about to go through something similar myself. I just prayed that it would all go away. But this was the reality and it was hard to accept the change that was about to happen. I was doing all the right things.. How could something like this happen to me?
4. What kind of treatment have you had so far, and how have you been finding it?
I underwent surgery which successfully removed the tumour, and left me with grafts in my femoral nerve and artery, and a shifted abdominal muscle (my surgeons were amazing!!) Following this, I had radiation. I’ve been finding it far better than I expected, although I’m not really sure what I expected in the first place!!
5. Who or what has helped support you through this time?
Faith has been my absolute rock during this journey. Being able to let go of control over my life and leave it to God lifted pretty much all the weight off my shoulders. My wonderful fiancee carried me through post-surgery, as did my parents and little sister. I found meditation and journaling very helpful, and doing my uni work, which gave me something to take my mind away from the physical effects of surgery. When I could, increasing my mobility, going to work and doing what I love with the most supportive colleagues totally got me through radiation.
6. What have been some of the biggest challenges for you?
Not being able to move or walk well was a huge struggle for me. I missed that kind of freedom. I felt like my life had been taken away from me which was challenging, but also motivating to do whatever I could to get it back. I also missed seeing all the people I enjoyed spending time with.
I also had some horrible side effects/reactions from medications which were extremely tough to get through.
7. What has helped you cope or find strength on tough days?
Truly, gratitude to be alive, and hope. Having my partner beside me, loving me in my most vulnerable form. And God.
8. Is there anything you wish others knew about living with sarcoma?
I would want others living with sarcoma to know that we do have the power to control the way sarcoma affects our being. We can choose whether to let it consume our souls, or simply be a part of our story. It is also so okay to have up and down days, because the reality is that it is not a great thing to have to go through.
9. What do you want your story to say?
I hope that this story reminds people that life is so unpredictable, but we are powerful beings who can shine brighter than who we were before. It’s a chance to show yourself and others what strength is.
10. Is there anything else you’d like to share with the Sarcoma Foundation community?
Each person goes through so much in life. And for us, sarcoma is part of our story. Trusting your instincts if you feel something isn’t quite right with your body even if you are young, and simply never giving up are the two most important lessons in this journey!