My late husband, The Laundry King, is part of a grim set of statistics. He had glioblastoma, an aggressive infiltrative form of brain cancer that has no cure. The median survival for glioblastoma is 12-15 months. That is, even with treatment, just 50% of glioblastoma patients survive this long after diagnosis. Only 5% of patients survive more than five years.
Living with a brain tumour is no picnic either. Depending on size and location, brain tumours bring neurological symptoms (seizures, headaches, progressive paralysis); cognitive decline affecting memory, concentration, decision-making and speech; physical fatigue; vision and sensory changes; and emotional, social and psychological effects.
Brain tumours represent a neglected illness, which places enormous challenges on the patient and family. It requires a much-increased research effort supported by the community and governments and more timely response so people can access support services. We were fortunate to be financially stable with practical family support but so many people do not have these resources.
Behind the statistics, every person has a story. That is why I sent the Laundry King’s beach sandals to Brain Tumour Alliance Australia to be part of today’s Head for the Hill awareness raising event at Parliament House in Canberra.
These shoes reflect my husband’s love for the beach – both swimming and sun bathing. The blood encrusted on his left shoe is from when he badly stubbed his toe as his mobility declined and tumour(s) disrupted the signals from his brain to his feet. I thought about cleaning them off but that seemed like erasing part of the story about how quickly a fit and healthy person can experience a precipitous decline. You never know which split second might be the zigzag bolt dividing all that went before from the everything that comes next.
I hope there are treatment breakthroughs to improve both survival and quality of life for brain tumour patients. In the meantime, I hope sharing a little of the Laundry King’s story helps raise awareness about this devastating disease.
