Back in 2011, I visited my GP for a general check-up. At the time, I was given the all-clear – only now, after a diagnosis of post PV – myelofibrosis, I discovered my blood test results were abnormal even then. My haematologist looked at those results and saw my numbers were already amiss. Had I been referred then, I would’ve probably been diagnosed with PV and treated. Instead it sat in me, undiagnosed, for a decade.
Despite high counts I was asymptomatic and busy raising my children, I continued to live a full life on the outskirts of Adelaide. I returned to my GP five years ago with gynaecological issues, my blood tests again delivered abnormal results – anomalies that were assumed to be a lab error.
With nothing else found, I put symptoms I was now experiencing – including extreme fatigue, intense headaches and hot flushes – down to a combination of perimenopause and stress.
After a fall at work resulted in a haematoma from hip to knee, I headed to the emergency room, only to be sent home without a blood test. When a resulting elbow injury blew up all the way to my armpit, my GP was alarmed enough to order complete bloodwork. The resulting blood counts led to a referral for an urgent hospital appointment – a referral that was then lost in the system.
Over the following weeks, I had began to actively advocate for myself as I struggled to receive answers. Eventually contacting a private haematologist, I began a process that resulted in a diagnosis of post-polycythemia vera myelofibrosis.
I am currently taking part in a clinical trial that combines two palliative drugs. I hope to become a suitable candidate for a stem-cell transplant. In the meantime, I am focused on appreciating every moment of life with my husband and children.
This diagnosis has been a huge learning curve and I found that advocating and educating for myself and the MPN community has been key to accepting and dealing with my diagnosis.
In 2022 my family and I decided to start fundraising and to date have raised over $30,000 for the Leukaemia Foundation. I have participated in patient story and patient webinars with the Leukaemia Foundation and have also founded a local support group based in South Australia.
I was invited to be a patient representative for MPN Optimal care pathways both for health care professionals and patients, undertaken by the Blood Cancer Taskforce.
I accepted the invitation to join the MPN AA team in February 2024.
