Toni Burness' story - A brain tumour blog

Toni’s Blog Helps Brain Tumour Patients

Blogger, Toni Burness has been writing a comprehensive blog about her brain tumour journey that will be a ‘must read’ for many brain tumour patients. Toni writes: “My hope is to create more awareness about the impact it has on the individuals and their families. If I can help one person, then I have achieved my goal.”

Below is an extract from the blog and a link to her full story:

Where it all started ...

17 November 2009, I was 19 years old - I still remember the day so clearly. I was in the middle of my 1st-year university exams when I started experiencing severe headaches. I pushed through my first exam the day before thinking that I was just stressed, and it was a normal headache. The headache lasted all day and was still there when I went to bed. In the early hours of 17 November 2009 I woke up and could not stop saying “i”, “i”, “i”... my mum rushed into my room to see what was wrong and then it eventually stopped. I took some Panadol and went back to sleep.

Not long after I woke up and my whole body seized up, I was having a full-body seizure. My mum, brother, and sister all rushed in to help, calling the ambulance and turning me on my side. It was all a blur ... The ambulance rushed me to the hospital. The doctors completed a few tests and were just about to send me home believing it was only stress-related, when the speech seizure happened again. I could not stop saying “i”, “i”, “i”. The doctors then sent me off for additional testing including an EEG and an MRI. Thinking it was stress-related, my family and I did not expect the worst.

The following day we were told that I had a left frontal meningioma which was the size of an apple and could have possibly been growing for the past 2-3 years. Having no symptoms prior to this it came as an incredible shock. I kept thinking this is not happening to me it can’t be real ... I’m only 19! The doctors recommended surgery to remove the tumour as soon as possible. My operation was scheduled for 5 days later at the Wakefield Hospital in Adelaide, South Australia.

During this time everything was a blur, I wasn’t feeling upset or negative about the situation I was in, I was focused on remaining positive. After being informed by the Neurosurgeon about the risks involved with this procedure and signing the paperwork, reality finally set in ... this was life-threatening surgery!

The morning of the surgery, saying goodbye to my family was the most difficult part; however, I stayed as strong as I could and held back the tears. The surgery took approximately 6-7 hours, I was then placed in ICU. After seeing my family for the first time after the surgery I was so relieved, words can’t even explain what I was feeling - I was so grateful that I was alive!

Waking up in ICU the next day I was so determined to get up and go for a walk. Not even 24 hours out of surgery, I was already up and walking around. I was then moved to my own room on the ward. During the first few days I was told to take it easy and just relax. I was allowed to get up for the occasional walk in the hallway with the physio. Four days post-op the biopsy results finally came in, I was told that my tumour was a Grade II Atypical Meningioma, which meant that it has the chance of reoccurrence. The surgeon also informed me that he was unable to remove the whole tumour as it was too close to my superior sagittal sinus (SSS), which is the blood vessel that runs along the top of your brain. They had to cauterize the blood vessel in the hope that it would help mitigate further growth.

I was home within 5 days of surgery and was instructed to take it easy and rest over the next 3 months. My post-operative care involved regular MRIs and check-ups every 3 months initially, moving to 6 monthly shortly after the first year of follow-ups with my neurosurgeon.

Staying positive and concentrating on the support from friends, family and others got me through this time. Unfortunately, this was only the beginning of many hurdles and challenges to come my way ...

A small selection of further chapters:

Our Little Miracle:

The Dreaded Infection:

One step closer to getting a skull:

Tissue Expander:

Or read the whole blog at:


If you would like to share your story with us, please get in touch, we would love to hear from you!


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