I took control after becoming adrift in the system
The long wait for a diagnosis took its toll on Bronwyn Bisley, but her biggest challenges lay ahead as the information she desperately needed dried up.
After feeling run-down and noticing swelling in her neck, the mother-of-three visited her doctor where a CT scan seemed to show Bronwyn had breast cancer.
It was an opinion that set in motion a significant series of events: a referral to an oncologist, more appointments and scans, biopsies and, eventually, surgery.
But breast cancer was eventually ruled out and Bronwyn was instead referred to a haematologist 200km away in Melbourne.
Bronwyn said: “Finally, about three months after my first CT scan scare, my blood cancer diagnosis arrived – by Skype.
The haematologist said I would need chemotherapy, six months leave from work and she asked if I had questions. I had absolutely no idea what to ask.
“Then I didn’t see her again for a really long time.”
Bronwyn was unsure about what lay ahead. She faced “distressing” chemotherapy sessions and debilitating side effects, felt like she didn’t have enough information or support, and had to wait two months between seeing her haematologist.
Overwhelmed, Bronwyn took the frightening decision to press pause on her life-saving treatment.
“I didn’t want to be on that factory line for months, having no discussions with my haematologist, being so sick and only feeling worse.”
Bronwyn decided to take control. She dedicated time to get the information she needed. She spoke to experts and friends and eventually travelled to Melbourne, two hours from her hometown, to meet another haematologist.
Feeling empowered and supported, it wasn’t long before Bronwyn was back having more individualised treatment in a way that better managed her side effects.
The information she gathered also saw her make positive changes to her lifestyle that helped her recovery.
The 50-year-old from regional Victoria, now back at work, said: “I never experienced those horrendous symptoms or side effects again. I was more informed, and everything became a lot better.
“It would make a huge difference if everyone with blood cancer was given the information, ideas, connections and support they needed right from the get-go.”