Time to read 4 min
Time to read 4 min
In 2017, 1,809 new cases of brain cancer were diagnosed in Australia, one of which being close to home within our own purple ASN family.
At only 18 years of age, Ellie received news of her brain tumour diagnosis and embarked on a life-changing journey to regain her health again with the support of the Mark Hughes Foundation.
From treatment options, surgery, her road to recovery and life after brain cancer, we were honoured to chat with Ellie about her brain tumour journey and her desire to give back and support those facing their own battles with brain cancer.
From the 29th of June to the 1st of July, Ellie will be taking part in The Big Three Trek, a 150km walk from Sydney to Newcastle to raise money for the Mark Hughes Foundation. To date, this incredible foundation has raised over 24 million dollars and has funded multiple grants and research projects around Australia to support families and those who have been impacted by brain cancer.
With research, better outcomes are possible for those experiencing brain cancer. Click here to support Ellie on her 150km trek and donate to the Mark Hughes Foundation!
I was only 18 years old at the time of my diagnosis, and at the time, it was a massive shock to both myself and my family. I was very overwhelmed and scared because I didn't really understand everything that was going on because I hadn't heard of many brain tumours before. We just followed the directions given to us by my specialist at the time, and it all felt very rushed.
At the time of diagnosis, I only told my close friends and family over the phone. I wanted to keep it quiet until I had time to wrap my own head around it all, as it was such a shock.
My only option was surgery, as they needed a biopsy of the tumour first to see if it was benign or cancerous. Lucky for me, it ended up being benign.
Emotionally it was difficult as I was so young. I was scared of the surgery I was about to have as it was an extensive surgery, and I was really overwhelmed with the news of the diagnosis. I am generally a really strong and resilient person, so I got through it all and felt it made me stronger and more resilient in the end.
So I actually unexpectedly woke up completely blind after my surgery. I wasn't aware of this risk and was on high doses of pain relief, so I couldn't exactly understand what was going on. I was completely blind for three days, and then my eyesight started coming back but only partially in my left eye. So the most challenging part was definitely adjusting to the loss of my vision. After surgery, I felt unbalanced and wobbly for a few weeks, and I would run into objects. It just took time to adjust.
I came across Mark Hughes Foundation when I was in the hospital. One of the MHF brain care nurses approached me with one of their beanies and introduced herself, and talked to me about how they could support me. The MHF nurse would turn up to postoperative appointments with me and also booked my MRIs to check the growth of the tumour.
So much different. They really supported me when I needed it the most and provided me with so much information, which helped me understand what I was going through at the time. They made things easier for myself and my family by helping book appointments and supporting us.
After surgery, I gained a fair bit of weight from the steroids I took to reduce brain swelling. Before surgery, I was a really active person playing netball and going to the gym. After surgery, I couldn't return to netball because of my loss of eyesight. I returned to the gym slowly, and I took my time getting back into it. I eventually gained my fitness back and lost the weight I had put on.
I have been going on a 10km walk each week plus lots of other smaller walks to get my body used to it, but I am generally a pretty fit person and go on regular walks.
The tumour impacted my hormones, so I am now on some medication to balance them out. Other than that, my health is great as I take care of it with healthy eating and exercising regularly.
They only got half of the tumour, so now we just monitor the remaining tumour, and I get regular MRIs. It has now been five years, and I have had no growth. Fingers crossed, it will never change.
Looking back on my experience, I would say just to be positive and to live your life to the fullest despite the circumstances you may be in. It's easy to forget to appreciate the little things in life.
If you or someone you know needs support with their brain cancer diagnosis, there are several support options available here.