In February 2014 I was diagnosed with a Grade II astrocytoma.
I had been experiencing problems with my concentration, speech, vocabulary and cognitive function for nine months before deciding to go to my GP to get it checked out.
Anxiety was the initial diagnosis, however my GP thought it would be advisable to ‘play it safe’ and get an MRI on my head just to make sure everything was ok from a physical perspective.
When I walked into the MRI room, the technicians said it would only take 10-15 minutes and wouldn’t involve a contrast injection. 45 minutes later when they were inserting a cannula into my arm I knew something wasn’t quite right.
Later that day, my GP called asking me to see him the next morning to discuss results.
After a sleepless night, I went into my appointment and my GP sat me down. He said the MRI had indicated a low-grade glioma tumour in the right temporal lobe. Following that, he let out a huge sigh of relief that we had the MRI, then mentioned he’d made a neurosurgeon appointment for me two days later.
Prior to my neurosurgeon appointment, I started documenting my thoughts and feelings on camera. While I was pretty scared about what lay ahead, I thought it would be beneficial to put everything down on camera in the hope it might serve a purpose down the track.
My parents nervously travelled to Melbourne for my first appointment. I was born with a rare congenital heart condition known as coarctation of the aorta, which required three open-heart surgeries prior to the age of 18, so my parents were anxious to see what lay ahead of me in my latest challenge.
The neurosurgeon examined me closely, explained the results of the scans and advised me that brain surgery was the only option to remove the 3cm x 2.7cm x 2.5cm mass from my temporal lobe. The date was set for mid-March (two weeks after the appointment) and I was issued with strict instructions for more MRI scans (including a Functional MRI to determine where my language was assigned in my brain), EEG and a series of blood tests.
During my blood tests it was discovered that I had a blood clotting disorder known as Factor VII Deficiency, which affects only 1 in 500,000 people. I met with a hematologist who looked through my blood profile and determined I receive plasma infusions during and after my surgery so I wouldn’t keep bleeding inside my skull following the operation.
I was admitted to St Vincent’s Private hospital on Sunday 16th March with a planned surgery the following day.
On the Monday morning I went down to Radiology to have a ‘stealth MRI’, which provides surgeons with geographical mapping of my head to assist with surgery. Once that was completed I returned to the ward and awaited my afternoon surgery time slot.
As 4pm rolled around, I bid farewell to my family and was wheeled down to the pre-op room where I awaited my general anesthetic. I remember feeling unbelievably nervous as I knew this could be my last moment of ‘normal life’ and I prayed everything would go ok.
The surgeon then came in with a very worrying look stating that the stealth MRI had not been done correctly and that they needed to get the scans done again, and push my surgery to the next day. I recall feeling as though I was on an emotional rollercoaster as I was wheeled back to the ward.
On Tuesday 18th March I awoke at 8am, went down for my new stealth MRI – the fifth MRI in two weeks – then went down to the operating theatre for the real thing.
Five hours later I groggily opened my eyes and my surgeon asked me a few basic questions to ensure I had my basic cognitive functions, then returned me to the ward for five days of resting, rehabilitation and adjustment.
I returned home on Sunday 23rd March for six weeks of nursing my wound, accommodating visitors, pushing my walking limitations and adjusting to alarmingly heightened senses (noise was the worst!).
After being in reasonably good shape prior to my surgery, I was keen to look at alternative ways to return to exercise in a controlled environment. I purchased a road bike with a magnetic resistance trainer and slowly set about building my fitness as the weeks meandered by.
As my fitness improved, so did my ability to concentrate and I set about putting my video together on my brain cancer experience. I knew that while my journey was still in its infancy, it was a story that could help provide support and motivation to those facing similar challenges.
I was recently offered an opportunity to run the New York Marathon in November for B*CURED – an organisation in the USA raising brain cancer awareness and funds for research.
After consultation with my neurosurgeon and neurologist, I decided I would accept the opportunity as it provides a goal for me to work towards, and a chance to make a positive contribution to something that’s taken a stranglehold on my life.
Follow-up scans reveal residual tumour and my battle is far from over, however the power of positive a mindset is KING.
It’s amazing the perspective you gain from undergoing an experience such as this. At 28 years old, undergoing brain surgery really provides an outlook on life that’s seldom seen by healthy people.
I’ve decided to get into the community to share my story and change lives. When you don’t know what lies ahead, it makes every one of life’s steps important. I’m going to ensure all of them are in the right direction.
My dad was a surgeon. After the seizure in late 2000 that signaled his glioblastoma, he was well aware of the dire prognosis. It was very hard to watch him “swing for the fences”, trying every brain cancer treatment available at the time. While he survived for 18 months after his diagnosis, his quality of life deteriorated enormously leaving him in a wheelchair and unable to read or speak clearly. He never mentioned dying, but rather how to speed the pace of research so that he could beat his disease. There wasn’t enough time for him but his legacy of trying to find a medical solution continues today. He is my inspiration and finding a cure to save people from his fate is now my passion.
In the summer of 2004, a few months shy of her 60th birthday, my mom, Leslie K. Bullock, started acting strange. Usually excited to attend events and see friends, she was oddly distant. Even disinterested in celebrating her birthday, a normal cause for celebration. My sister and I noticed the change and were concerned after she calmly noted she may euthanize our family pets so she didn’t have to care for them.
We encouraged her to see her GP, who, at our urging performed a cat scan. Although our mom Leslie didn’t think it was necessary, my sister stayed to make sure she didn’t try and sneak out of it. Quickly, yet not surprisingly, we learned an aggressive grapefruit size tumor was growing in her left frontal lobe, where all speech and thought are developed.
Considering the shape, glioblastoma was only mentioned as a possibility since it normally presents in a tree-like shape. The greater concern was the size and need to for it to be surgically removed before the swelling and pressure caused a fatal stroke. We moved her to Johns Hopkins and Dr. Henry Brem successfully removed the tumor, and noted the biopsy confirmed it was a glioblastoma. She would be “lucky” if she was alive in 9 months, even with the medical treatments available.
Shock and stun don’t accurately describe the emotions that came with understanding the diagnosis. We all just wanted to get her through surgery and get back to the lives we knew. Little did we understand, nothing would ever be the same. She transitioned into 6 weeks of radiation and lost all of her hair and gained a whole new personality on steroids. Then she began chemo where she quickly exclaimed she would do until it was no longer working. She did not want to be a guinea pig.
Shockingly, she lived a relatively calm, somewhat similar life, although not able to drive or be alone, she could do a lot of things including exercise. And 9 months came and went and suddenly it seemed she may be defying the odds and change the course of this horrific prognosis. Then on the eve of her 1 year anniversary she had a stroke and never spoke again. Soon thereafter she declined and within months was the image of the disease we had heard about. In late February, the dreaded news came that her tumor was back and growing and the treatment was no longer working. Unable to truly communicate, she looked at the doctor and me and nodded her head acknowledging her initial wish was still true. She hugged her doctor and motioned goodbye and we went home and started meeting with hospice and physical therapists and nurses to keep her comfortable.
By early summer she was completely bed ridden and hard to understand even her facial expressions, but she was hanging on. Most of the doctors noted by this time, it would come on her terms as we were no longer able to understand how big the tumor had grown. Her last three months were terrifying and sad and heartbreaking. It was never clear when or how this would happen, and she was completely dependent on the steroids that were keeping the brain swelling down, but had blown up everything else. She seemed exhausted and tired and sad, but the tumor had robbed her of full expression or feeling so that original distance had returned.
A few weeks before she passed, I sat at her bedside like I did each night and said to her, “I just hope you are OK. I love you so much.” The next morning my mom’s best friend Margot had received an odd call from her son-in-law who had randomly dreamt of my mom the night before and said she looked him in the eye and said, “I am OK.” Not knowing what had transpired between me and my mom, Margot saw this as an incredible sign. I burst into tears relieved, amazed and totally blown away that in this small way we could communicate.
On September 13, 2006, two days shy of her 62nd birthday, she passed away surrounded by her family. Unlike the doctors thought, she well surpassed nine months and survived for 22. Sadly, the last 10 months were completely devastating. Brain cancer is like watching someone with the worst cancer suffer alzheimer’s simultaneously.
The only thing that made any sense to me was putting my life into finding a cure for brain cancer. I couldn’t believe when she was diagnosed and when she died, I knew this terrifying disease robbed her of living out the beautiful life she was meant to live.
Since becoming a part of B*CURED, ten research grants have been awarded and partnerships have started with prominent researchers, innovators and dedicated supporters. I could not be more proud to be a part of this organization and see us bring brain cancer research to the next level. There will never be a day I don’t think of my beautiful mom. But through B*CURED I know we are honoring her and bringing greater opportunities to people who face brain cancer.
My mother was a gifted writer. After a successful career writing for television and radio she later went on to write novels. She loved public speaking and was given constant praise for her way with words. She could quote Shakespeare, Dickens and Hemingway as if she were reciting the alphabet. When my mother couldn’t find the words to speak a simple sentence I knew something was wrong. Within a matter of weeks she went from being a brilliant, vibrant woman to fearing she had dementia. She was diagnosed with a glioblastoma (the most common and aggressive form of malignant primary brain tumor), and immediately had surgery to remove it. Over the next five months my mother suffered endlessly, losing the ability to walk, talk and do anything for herself. Watching such a bright, dignified woman suffer this way was cruel and painful to us all, but especially unfair to my mother. Seeing my mother succumb to this horrible disease, and realizing how little progress there has been in the treatment of glioblastomas, I knew that I had to do something to make a difference.
In March of 2003 my mom suddenly started acting distant and appeared indifferent to things she used to take great interest in. I was playing tennis in Hilton Head for my senior spring break trip, a trip that Mom usually attended. This year was different. I called her to tell her the good news about our match and the tone of her voice was unfamiliar to me. This wasn’t my mom on the other end of the phone. She was quiet, placid and didn’t ask any questions. For once, I was leading the conversation and for once, I didn’t sense any excitement on her part about a Trinity College tennis win. I knew something was wrong.
Mom, Dad and I were in the emergency room a couple of days later. Initially, we thought she might be dehydrated (cause of headaches,) or that she had a stomach bug (vomiting). Dad and I were actually laughing in the ER, thinking maybe we were overreacting and that a good night’s sleep and some Gatorade would do the trick. We sat waiting for the news that Mom might need some IV fluids or vitamins or something that we could pick up at the pharmacy on the way home. However, instead, a doctor approached us with the most grave look on his face. I remember hearing the words, “brain tumor” followed by the adjective, “aggressive.” Then the term glioblastoma, which meant nothing to me then. This was surreal. The information was too massive to assimilate. The look on the doctor’s face, the tone in his voice, seemed to convey that she had months to live. At age 21, if my mom’s life was ending, then so was mine. She and I were almost one person, a world without her was unimaginable.
That night, Mom was taken to Brigham and Women’s Hospital in Boston by ambulance. I sat with her, her wingman, just as she had been by my side for my entire life. Still in shock, I held her hand the whole way, praying that there had been some mistake or that I would wake up from this nightmare. I thought, things like this don’t happen to me! Tears were running down my face, but my mom was strangely calm, she just smiled back at me. This peacefulness while those around her were in a total state of panic was SO unlike her. The brain tumor had changed her personality, it prevented her from processing emotion. Which was ironic… Mom was the only person who wasn’t devastated.
My mom, Jane Sargeant, was all sunshine. She was bubbly and warm, she was brimming with personality and was always interested in others. Never for a moment quiet, there was always something she had to share with us. I still pull out her notes of encouragement and her letters, and am struck by how deeply she loved, especially her kids and her golden retrievers.
Within days, Mom lost her ability to speak. April 7th was my 22nd birthday and we spent the day in the hospital. It must have been with help from my aunt, but my mom had a birthday card for me. In it she wrote, “I was put on this Earth to be your mother.” Mom’s eyes filled with tears as she watched me read it. At that moment, I sensed that on some level she understood what was happening.
After four short months, on July 2, 2003, Mom lost her battle with brain cancer. For all of you who were by my side during this devastating period, there are not enough words to thank you. In the years since, nothing makes me happier than when old friends tell me stories about her or new friends ask me what she was like. It brings her back to life.
As does B*CURED. Joining this wonderful organization has not only connected me with so many others that have shared a devastating loss, it has given me fresh purpose to honor my mom’s life and to help end this horrible disease for all of us.