It all started in 1999. Dam and I were living in London enjoying life, travelling, working and spending time with friends and family. Occasionally Dam would come home from work and say “I had this funny feeling today, I can’t describe it but I had a metal taste in my mouth afterwards and I’ve had a headache since”.
We left the UK in May 2000 and took a 6 week trip through the US on the way home. The frequency of these episodes had increased over the past year from every now and then to daily. I remember wondering if Dam had Epilepsy. We arrived home late June, after 2 ½ years away. Within a few days we had Dam booked in to see our local GP. He didn’t let on too much but straight away and he sent us to see Dr John Cameron, a Neurologist. John ran some tests and told us that Dam had Epilepsy. We were shattered, we both still clearly remember catching the train home and thinking our world was crashing down.
"I still laugh at how naive we were"
John told us Dam had to have an MRI and then see a Neurosurgeon. Similarly to Gary, our GP, John didn’t let on that there was anything else to worry about. Dam had the MRI and we went to see Dr. Leigh Atkinson. Leigh was very straight forward and to the point, he took a piece of paper and a black pen and wrote in really big letters “CANCER”. He said something along the lines of ‘Damian has a Brain Tumour, we will have to resect part of his brain, give him some radiation therapy, possible some chemo and then see how long he lives”.
Needless to say we were shocked to the core, neither of us expected this, it made Epilepsy seem like a walk in the park compared to the death sentence Dam had been given. Dam was diagnosed with a low grade Oligodenroglioma. Within a few weeks he was to undergo the removal of the better part of his left temporal lobe. We passed the time getting his affairs in order, creating Wills etc, which is a sobering life experience for anyone but particularly someone just a few months shy of their 30th birthday. We tried, but failed, to stay away from the sobering statistics of Dam’s long term survival. The statistics indicated that only a small minority of those diagnosed with this type of brain tumour would survive more than 8-10 years. However Dam has never fallen victim to the statistics and for the past 15 years has shown incredible positivity through everything that has been thrown at him.
Dam came home the day before his operation with a shaved head before having to deal with losing his hair. He was overcome when photo’s arrived of “Griff’s Barber Shop”. Dam’s mates, who were still in London, had all shaved their heads in support of him and have continued to be a pillar of strength for him. June 30, 2000 arrived and Dam went in for an operation to remove as much of the tumour as possible. The operation proceeded without complication. Dam spent the night in intensive care at the Princess Alexandria hospital. After 2 nights in hospital Leigh decided Dam would be better off recouping at home. He was definitely a site with around 30 big staples snaking around his left ear and scalp. It took him a while to rebuild his strength and even longer to regain his coordination. As a keen sportsman he struggled with this but persisted and eventually regained most of his skill.
Six weeks post-op, after the swelling had subsided, Dam started radiation therapy under Dr Guy Bryant, Radiation Oncologist. Every night for 6 weeks we went to the Radium Institute in South Brisbane for Dam’s radiation therapy. It seemed really obvious to everyone that Dam was out of place, he was decades younger than all the other patients. Eventually the cumulative effects of radiation caught up with Dam treatment and he seemed to sleep a great deal of the time. Eventually Dam completed all the recommended therapy, we had to wait a few months until all the swelling subsided and then it was time for another MRI. We were to see how effective the treatment had been. It seemed to be good news, although it’s always hard to know, when looking at a scan, what is tumour and what is scar tissue. The Dr’s informed us they’d have a better idea in another 3 months as they could compare the scans and see if the tumour was still growing.
So we got on with our lives. Dam’s slowly returned to work rebuilding his strength and every three months he had another scan. Three monthly scans become six monthly, six monthly became yearly and eventually every other year. The result was always “No noticeable change in the tumour”.
We were blessed with two gorgeous healthy children, Phoebe and Finn, we built a few houses, changed jobs, took some great holidays. Dam continued to take medication for his epilepsy which has had long term affects on his energy levels, his appetite and moods but he was alive and cancer free.
"Everything came crashing down in March 2009."
Dam had a routine MRI check up but this time the results were different. The tumour had recurred, it was more aggressive than before and it had now moved into the Parietal Lobe. It seemed unreal, we thought we had dealt with that chapter in our lives. It seemed even harder to comprehend and cope with now, with two small children. Surgery was too risky. It was decided that chemotherapy was really the only option, it wasn’t a cure but the plan was to try and stop the tumour growing. Dam became a patient at HOCA “Haematology Oncology Association” under the care of Dr Paul Mainwaring, Oncologist. Paul recommended two forms of Chemotherapy for Dam. An oral chemotherapy, “Temodol” which he took daily with nausea medication and an intravenous chemotherapy, “Avastin” which he had fortnightly.
Dam has continued bi-weekly Avastin therapy ever since. Paul calls Dam his ‘miracle boy’ as he has far exceeded the life expectancy that Paul had thought possible. The rollercoaster ride has continued. Easter 2012 Dam complained of a severe headache and had difficulty swallowing. One side of his body was stony cold. After a few days of persisting symptoms we went to the hospital on Easter Sunday. Dam was admitted and eventually diagnosed as having had a stroke. It seemed the Avastin had caused extremely high blood pressure which in turn caused a stroke. The side effects of the stroke took a little while to become apparent. Whilst fatigue has continued to been an issue since 2000, the stroke introduced a right side weakness which has caused lot’s of muscle deterioration and associated problems.
Dam became a regular patient at the Mater Rehabilitation Unit where he saw a team of Allied Health Professionals. An updated diagnosis late in 2011, where Paul advised Dam his life expectancy was 18 months at best, caused Dam to stop and reconsider his priorities. As a result Dam finished work in February 2012 in an effort to reduce stress and spend more time with his children. Unbelievably, the years have ticked by, every so often Dam has a health ‘setback’ and we adjust to the new ‘norm’. However Dam is still fighting the good fight and has survived long enough to reach a key milestone; that was to see Phoebe enter high school and Finn to commence at Dam’s old stomping ground, Gregory Terrace. He still has fantastic positivity and believes he is invincible.
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