"I'm so sorry floss, it's not my eyesight. It's a tumour the size of a plum on my brain," Dad told me on the phone after being given the devastating diagnosis.
Dad never ever got sick, so the diagnosis was a bolt from the blue. But we didn't have long to deal with the shock, because not even a week later, he was having brain surgery.
The diagnosis gave Dad no choice but to sell his successful real estate business, rely on family to make decisions for him and sell his beloved fishing boat while he underwent treatment. "I'll buy another boat once I'm better," he told us hopefully.
The primary tumour was a grade four glioblastoma multiforme in the temporal lobe. I never for a minute thought we'd lose him. But six short months after he was diagnosed, the disease took him from us -- a year ago last month. He was 61.
Dad knew something wasn't right when he returned from a fishing trip with a mate feeling nauseous, crashing into bed for three hours. He'd been struggling to read for a while -- he described it as being like missing jigsaw pieces on each page. "I can't read the words anymore, they all blur together," he told us. His eyesight worsened after surgery.
To us, Dad had been vague for the past three or so months. He'd been exhausted and absent-minded when he stayed with us at Christmas time. Post-diagnosis, close friends admitted he had been that way for a while.
My dear Dad had a long way to fall. He was a young 61-year-old. A philosophical fellow with a gentle heart. He hugged tight, and always packed two days' worth of living into one. He was an early riser with a long list of things to achieve. Life was too short to watch TV. He had things to do. Places to see. Jobs to tick off. Houses to sell. Fish to catch. A garden to tend to. Holidays to take.
But that all changed after the diagnosis and subsequent treatment. As brave as he was, and try as he might to fight this cruel disease, brain cancer got the better of him. I still can't believe he's not here with us.
The personality changes were hard to accept. Suddenly, Dad was suffering from depression. He cried constantly, and soon, he could no longer speak in sentences, which reduced him to tears. He was forgetful and confused, regularly asking for breakfast in the evening and vice versa. He was extremely sensitive to light and noise, angry, apathetic, paranoid, and at times, irritable and aggressive. And despite being warned by Dad's treating doctors that speech, behaviour, memory, vision and emotions are commonly affected with a temporal lobe malignant tumour, we prayed for a miracle.
Tasmanian neurosurgeon Andrew Hunn removed Dad's tumour. He says that personality changes can be a natural reaction to diagnosis, while treatments can also affect mood and cause irritability.
"Family often say once a patient has been diagnosed that they hadn't been themselves for eight months now, or hasn't been right since Christmas. They might not seem quite as sharp."
One of the countless personality changes we noticed in Dad was his diet. We were stunned to find that he woke up from surgery with a sweet tooth. After six decades of passing on dessert, suddenly Dad craved cake and lollies with reckless abandon.
The manipulation of the brain itself during surgery can also produce undetected micro-injury, which may be significant, Hunn adds.
Classic issues with temporal lobe tumours are seizures, partial seizures, complex partial seizures, memory and concentration issues and memory disturbances, Hunn explains.
"The totality of the interference in the brain may add up to something very real. Much along the lines of where people in recent months and years have become much more aware of the impact of repeated head injuries."
"Surgery on the brain causes quite significant emotional issues in the patient, but growth and swelling compresses and damages brain tissue, complicating things further," Hunn says.
WHAT YOU NEED TO KNOW
Around 1600 people are diagnosed with brain cancer in Australia annually, and approximately 1200 die from the disease every year.
Research shows changes in personality and behaviour occur in the majority of patients with brain tumours at some point during their treatment.
According to the American Brain Tumor Association, "common cognitive changes and personality-related problems experienced by patients with brain tumours are usually associated with:
- Language and Communication: Difficulty with verbal fluency; speaking, reading, and/or writing.
- Emotion and Personality: Psychiatric symptoms such as depression, anxiety, or obsessive-compulsive behaviours; changes in emotional control such as irritability, mood swings, or withdrawal; socially inappropriate behaviour; and/or denial that behaviour is a problem.
- Learning and Memory (particularly short-term memory): Difficulty processing, storing, and remembering information; short-term memory loss.
- Attention and Concentration: Confusion, easy distraction, difficulty multitasking and planning.
- Executive Functioning/General Intellectual Abilities: Decreased reasoning ability, impaired judgment, inability to connect cause and effect."
After surgery, Dad underwent radiation treatment, then oral chemotherapy treatment and was prescribed dexamethasone to control the swelling on the brain, among other medications. The disease itself combined with the cocktail of drugs and treatment can have a significant impact on personality, Hunn explains.
Radiation therapy can also produce sudden changes in a patient, usually as a result of the brain swelling from radiation, Hunn says.
Dexamethasone to reduce the swelling on the brain also has common side effects, including dizziness, mood changes, severe mood swings and personality changes, anxiety and tiredness. But knowing these side effects didn't make it any easier to witness.
Weeks after surgery, Dad fell head-first into a plaster wall at home, resulting in bleeding on the brain. He was re-admitted to hospital for three weeks. A scan revealed that, devastatingly, the aggressive tumour was growing like small seeds throughout his brain. Dad was also losing the use of his right side; unable to hold a fork or a pen. He was also unable to read.
"When seeding of the tumour occurs, it's a far more complex case, which is why the impact on your father's speech and ability to understand was so devastating. It's far more difficult to predict what he was able to understand. Aggression can occur, or patients might become moody, or prone to temper," Hunn explains.
Dad couldn't speak a sentence or comprehend what was being said to him, which is common, Hunn says. "People can start to have disturbance in speech performance, which can be understanding words, as well as production of words.
"Once you've got problems with speech, it becomes very difficult for patients, even if they're very slight, to fully understand what others are communicating to them. And it might not be apparent for some time that they're actually not understanding you," Hunn says.
Given the impaired judgement so common in brain cancer patients, Wills and other significant decisions should be considered before surgery.
"So many people have declining judgement or awareness of the significance of what they're dealing with and what's put in front of them. At the very least, there's the risk after tumour removal that judgement issues will decline. It's a very stressful time in a family."
My dear father -- whose mantra in life was 'have a little party every day' -- was now irritable, vomiting, fatigued and extremely sleepy, at times sleeping up to 18 hours a day.
Hunn explains: "Radiation is surprisingly noxious on a patient and their mental capability. So the possibility that there can be unintended consequences of radiation are very real," he says.
Radiation oncologist Dr Eng-Siew Koh treats patients at Sydney's Liverpool Hospital who present with a range of cognitive, behavioural and emotional changes. She pointed to research in this area to help other families understand. UK-based Brain Tumour Charity also has a handy fact sheet for families. This includes research around patients being egocentric, an inability to understand another's point of view and finding it hard to pick up on what others are feeling.
"Mood changes, irritability, changes in particularly short-term memory can occur. Confusion, apathy, intelligent high functioning individuals find difficulty in executive function, such as planning, organising and multi-tasking are common," Dr Koh says.
"Some people who are normally emotionally very steady can sometimes not just be irritable, but also aggressive. Whether that's verbally aggressive or physically aggressive. Someone who is normally very controlled and appropriate can become disinhibited or inappropriate to family members, which can be very distressing.
"The significant swelling from the tumour and the growth in the brain can put additional stress on the brain. Then the use of steroids to control brain swelling is commonly responsible for personality changes, irritability, aggression and other changes," she says.
Sometimes, the changes are more noticeable in far higher functioning individuals.
Research is improving in this area, she says.
For our family, we choose to remember Dad in happier times and the wonderful father and grandparent he was. Because the disease stole him from us well before his last day on this earth.