To raise awareness of the terminal reality of brain cancer, patients and their families are sharing their private moments of diagnosis for the public to see.
By sharing their diagnosis stories, you are helping The Brain Cancer Centre achieve our vision: that one day no lives are lost to brain cancer.
Lachie Stevenson, 19
“Jeez, Mum, we could swim out of here in your tears.”
Lach had been unwell for four days, feeling nauseous and vomiting randomly. By Friday, he felt that he was unable to go to work. He phoned the doctor and was able to get one of the three appointments left for the day. The doctor diagnosed vertigo and gave medication accordingly, however also sent him for an MRI on Tuesday – just to rule out any nasties. He deteriorated over the weekend and by the time Tuesday came around, he was struggling with his balance and wouldn’t go anywhere without a bucket.
We went to South West Healthcare in Warrnambool for his MRI. It took time as Lach was also struggling to lay flat. By the time it was complete, he was sent to emergency for a jab in the belly to stop the vomiting and to keep us in the system as they had found something nasty in his MRI.
Lach went through triage in Emergency and was given a bed and jab instantly. I, however, sat in the waiting room for two hours due to COVID. Once I got in, Lach looked a million bucks. He was settled, not nauseous and had been able to have a good snooze.
Lots of doctors and nurses came to see us, so I knew something wasn’t right. My heart was sinking. I was struggling to hold myself together, whilst Lach just took everything in his stride. Not much phased him, he was the most amazing kid. I remember a lady by the name of Stephanie who came to see us. I’m not even sure what title she held, but she started with ‘You probably know that something’s not right…’
I remember being told that the lesion was 2.4cm in size and that it was on the cerebellum, however at that point I knew nothing about the brain! She then proceeded to say that it was ‘most likely cancer’ and that ‘it was probably going to take over our lives.’
I remember thinking, “What? Surely they can remove it? Modern medicine is pretty amazing and it’s only 2.4cm!”. It became real when Lach looked at me with horror and asked “Is that cancer?”. I convinced him to take one step at a time, it could be anything.
I went into shock, trying to be strong for Lach. He shouldn’t have had to be strong for me. Everything was surreal. There was a lot of noise and people fussing. I just didn’t believe what they were saying. This was never meant to happen to us. We were being transferred to Melbourne… it must be serious… they were talking about the air ambulance… But Lach was going to have nothing but the best.
The formal diagnosis
Lach had surgery six weeks later, which was frustrating waiting for test results and watching him deteriorate. By the time he had surgery, it had become an emergency. It wasn’t until after surgery when they did a biopsy that we received the actual diagnosis at the Royal Children’s Hospital, a diffuse midline glioma, the worst possible diagnosis that we could receive.
I was in shock, but I kicked into overdrive and asked question after question. Jas [Lachie’s dad] was dumbfounded. We were told that Lach would have radiation but that would only keep the tumour at bay for a period of time. It would most likely come back, and in a more aggressive state. At that point, Lach should just enjoy life, go to parties. But Lach never quite got back to that point.
We walked out in a daze. Everything was blurry. I was shaking, yet trying to push Lach in the wheelchair. He couldn’t see me: I was trying to stay strong, but the tears were sneaking out my eyes, down my cheeks. My world had just been torn apart.
True to form, Lach looked at me as we sat down and said, “Jeez, we could swim out of here in your tears Mum!”.
Lachie Stevenson’s diagnosis has been generously donated by his mum, Amy Stevenson.
Zoe Stanley, 5
“In that moment, my daughter’s life had been cut short.”
In early March 2017, our beautiful only child Zoe Stanley was diagnosed with Glioblastoma Multiforme, a rare aggressive brain tumour that had no effective treatment.
I still remember the day like it was yesterday. My husband and I had a meeting at 1pm in the visitors’ room on the surgical ward where our daughter Zoe was recovering from brain surgery at the Royal Children’s Hospital in Melbourne.
We had to leave Zoe for this meeting which would determine her future. It was so hard to leave her. The next minute we looked towards the door and were greeted by about ten health care professionals; including Zoe’s beautiful lady neurosurgeon Juliet, two oncologists, nurses and more. Being a nurse myself, I just had this feeling that this news wasn’t going to be good.
They told us, “Your child has brain cancer. Go home and make memories.” Our life had just been turned upside down in an instant. My heart immediately felt like it broke into a million pieces.
I remember going into complete shock. I could barely feel anything but helplessness and despair. I couldn’t think. I didn’t know what to do. I couldn’t make sense of anything they were saying – ‘Go home and make memories?’ – what the hell. How could I survive breast cancer, but our beautiful little happy girl, our absolute world, was about to endure radiation, multiple MRIs and no effective treatment.
I felt helpless. I wanted something to blame. Just to wake up from this nightmare. Give it all to me. Just take it away from our daughter. She’s so little and innocent. She has a life to live full of happiness and dreams. Not hospitalisation, radiation.
I felt numb and scared that I was about to lose the one and only thing that made my life shine. My Zoe. I was in tears, so was my husband. We couldn’t believe it.
How could life get so cruel? I just wanted to swear. I was so angry! And still am angry at brain cancer to this day.
Zoe Stanley’s diagnosis has been generously donated by her mum, Penny Stanley.
Jed McDonald, 17
“His life was just taking off.”
My son Jed was diagnosed with a Pilocytic Astrocytoma in June 2017, when he was in the middle of Year 12.
Before the diagnosis
His life was just taking off, his friends beginning to turn 18, enrolling for uni, going to the pub! He was an excellent soccer player and although his game went a little off, we thought he’d had a growth spurt and lost some coordination, but then a few headaches started.
We had been for an MRI scan in the afternoon. Whilst the scan was taking place the radiologist came out to seek my permission to inject some dye into Jed to get better imaging. As soon as he asked this I just sat there and waited for Jed’s scan to be done, but I knew that this request meant there was something to be seen.
We all came home, we’d just finished dinner and Jed was doing his homework. It was 7pm. My mobile rang but I missed the call, my husband’s mobile rang and we missed that too. Then the home phone rang and we rushed to pick it up as that never rings.
It was our GP. He was awkward and said, “There is no easy way to say this but he had just received a call regarding Jed’s MRI results. Jed has a glioma – I have little more information than that. I can’t tell you if it’s a good one or a nasty one. The hospital has asked you to go immediately to the emergency department of the Royal Adelaide Hospital. There is swelling in Jed’s brain which needs immediate attention.”
I then had to tell Jed. It felt surreal. All I could think was, “He’s just too beautiful for anything to happen to him.”
We were all in shock, but adrenaline kicked in and we all went straight to hospital. My husband even crashed the car against a post in the carpark.
Jed was quiet, calm, brave and somehow seemed to be in total control, with a belief everything would be OK.
With surgery two days later, our lives were never to be the same. He underwent three brain surgeries: two here in Adelaide, one with neurosurgeon Charlie Teo. But Jed never walked unaided again and he never got to go to the pub with his mates.
The years after
Jed passed in June 2019, I was diagnosed with breast cancer in August 2019. I have now completed treatment and can focus on how I can possibly make a difference for others. Breast cancer didn’t touch the sides, compared to my son’s brain cancer journey.
Jed and our family have been magnificently supported by his five best friends, who at 17 years of age, were and still are truly remarkable. The football club that I work for, were all set to trek Kokoda [postponed due to covid] to fundraise and support families suffering brain cancer.
Jed McDonald’s diagnosis has been generously donated by his mum, Louise McDonald.
Diane Dunn, 54
“My business, and future plans for it evaporated – along with my health.”
Before the diagnosis
In late 2016 I was running a wholesale bakery. I would bake on Mondays and Tuesdays (by myself), deliver to cafes in the Geelong area on Wednesdays, and on Thursdays and Fridays I’d prepare and bake to open to the locals on Saturdays – selling bread and pastries.
Life was extremely busy and physically demanding. In hindsight, the only inkling I had that something might be wrong was a trembling left arm when trying to remove heavy baking trays from my ovens. I thought nothing of it. I was a physically fit, 50-something woman who took great care of her health. I never smoked or drank, and was vegetarian for decades – way ahead of my time!
November the 9th was a Monday evening. After an exhausting day in the bakery I fell into bed. I awoke at 3am having a seizure, was in ED by 5am and a lesion in my brain was detected by light of day. Within hours I was connected to a brain surgeon in Melbourne via telephone, who made arrangements for me to see her. Within two weeks I had had surgery.
I live with it every day. It affects everything I do. My job had required physical and mental agility, not to mention huge financial and emotional investment from myself and indeed my close family. My business and future plans for the bakery evaporated, along with my health. When I’m planting my garden I think, “Will I live to see my garden grow?”.
When I saw the statistics around brain cancer, all I could say was, “What do you mean? How can this be true?”. I was, and still am blindsided, by the unexpected change to my life and my expectations of the future. I am passionate about bringing about a change in the survival rates for brain cancer. If that means losing some privacy it is a small price to pay.
Diane Dunn has generously donated her diagnosis story.
Andrew Rhodes, 32
“It felt like someone was speaking a foreign language.”
Earlier that week, I had a brain MRI and was asked to see the doctor for the results. I didn’t think much of it. On the day of the appointment, I left the office telling my colleagues I would be back in an hour. Around 3 o’clock, I arrived at Cabrini Malvern and went to my ENT specialist’s reception area.
I was alone when I was welcomed into his consultation room, where he quickly and concisely told me the diagnosis: “The scans have found a large lesion on your brain.” As someone with limited medical knowledge, I didn’t immediately grasp the severity of the situation. The doctor explained it was a tumour the size of a billiard ball and showed me the scans, leaving no doubt about the large tumour on the right side of my brain.
Due to its size, I was informed that I would likely need an urgent craniotomy to remove it, and arrangements had already been made for me to see a neurosurgeon in the coming days. When the doctor asked me what I thought, I responded with, “We just need to do what needs to be done.”
I remember hearing words like ‘tumour’, “’craniotomy’, ‘neurosurgeon’, ‘cancer’ and it felt like someone was speaking a foreign language. At that point in my life, I had never met a neurosurgeon, and I had no idea what a craniotomy was. It was overwhelming to process all of this new information.
The doctor mentioned that the hardest part of receiving such a diagnosis is often telling loved ones, and offered to call someone for me. I asked him to call my mum, a former registered nurse, but there was no answer. Then, I asked him to call my dad, who also didn’t answer. Since my partner and brother were both at work, I told the doctor not to worry them and that I would tell them myself. In a strange way, my parents not answering their phones provided a bit of comic relief to a situation that caught me off guard.
Upon hearing the word ‘tumour’, I realised that my life had just changed in an instant. Memories of a close childhood friend losing their mother to a brain tumour flooded my mind, and I couldn’t help but wonder if I would face a similar fate. Despite my racing thoughts and churning insides, I was determined to project strength and not cry. The doctor would later speak to my mother and describe my reaction as stoic. Fortunately, a mask concealed my quivering lips, and I felt grateful for it.
After leaving the consultation room, I went to the ground floor of the hospital and visited the bathroom. As I stood there, I felt overcome with emotion and tears began to well up in my eyes. Once I had composed myself, I looked in the mirror and spoke aloud, “You can do this”. Though I admit, inwardly, I was unsure if the words I spoke were true.
Andrew Rhodes has generously donated his diagnosis story.
Laurence Pavone, 41
“Tears rolled down my face thinking of the shaky road we were suddenly riding on.”
Laurence had had a previously dormant tumour. An annual routine MRI showed that it was stable, but Laurence had been experiencing problems with his speech (jumbling words) and went for another scan. Within two months, the tumour that was barely visible was now a huge mass clearly visible on MRI.
The oncologist’s office
I felt nervous, anxious, had sweaty palms. I think deep down we both knew why we were there. We were finally going to receive the news we had dreaded for the past 15 years. As soon as I saw the image on his computer screen I thought, “Oh my god, it looks like someone has thrown a paint ball onto his brain and it’s gone splat”. You couldn’t miss it, you couldn’t unsee it. This was bad.
Our oncologist came into the room with his head bowed and a nauseous look on his face. His first words were, “I’m sorry, It doesn’t look good”. He used the words ‘high grade’. We knew what that meant. He proceeded to give us the options – they were very limited. One thing we remember not receiving… hope. Treatment options had not changed or advanced in 15 years.
The room was eerily quiet. Tears rolled down my face as I tried hard to listen, trying to be strong for him, while at the same time thinking of the shaky road we were suddenly riding on. The oncologist wiped tears from his own cheek. Laurence was cool and calm. His immediate main concern was the kids and I. How were we going to tell them? How were we going to deal with this?
The journey home
The hour ride home was filled with questions and worry. Laurence kept saying, “Don’t cry, it’s all good”. The most positive and optimistic person you would ever meet, even in the face of adversity.
Laurence Pavone’s diagnosis has been generously donated by his family
Athan Mirmikids, 51
“It’s the strangest thing. a temporal shift of gigantic proportions.”
We are surrounded by loved ones, friends and familiar landmarks,
And yet, we are far at sea,
adrift without a compass.
Despite being encircled by the familiar,
to the point of suffocation,
there is no clear path.
No trail of stones reflecting the moonlight to lead us back.
We are adrift yet observed,
lost in full sight,
like some warped sideshow alley,
a ghost ship.
We fall quiet making our way through the day to the afternoon,
but moving as softly as we can.
Trying to feel our way to the edges of our old selves and life,
as if blindfolded and fumbling for whatever we can find to anchor us.
And then the alarm tolls,
it’s time to take that bitter pill.
And the lessons are there, the old adages…
I am acutely aware now, of the innate relationship between fear and bravery.
They are so closely intertwined that their defining features are hard to distinguish,
you can’t have one without the other.
Athan Mirmikidis’s diagnosis has been generously donated by his wife, Imogen Mirmikidis.
The Public Diagnosis
The Public Diagnosis campaign features the real stories and experiences of Australians diagnosed with terminal brain cancer.
In making their private diagnosis moments public, these brave individuals and loved ones are hoping to change the outlook for those diagnosed in the future.