I’m now residing in Australia but was diagnosed and treated for acute myeloid leukaemia (AML, Inversion 16) in Newcastle, UK in 2017/2018. I was 34 years old at the time of my diagnosis. I hope my story about how I was diagnosed helps and encourages people to advocate for their health, especially when the system appears to be ignoring them.
I moved to Durham from Melbourne, Australia with my husband and young son in July 2017 for a new lifestyle and to be closer to my husband’s family. I managed to settle and secure an Occupational Therapy position at a local hospice.
In September 2017, my health started to go downhill. I thought I had caught a bad cold, but this progressed quickly into a terrible, persistent cough.
The GP told me on two separate occasions that I had the flu, but wouldn’t formally test for this because I was presenting with flu symptoms outside of the ‘normal season’. A blood test was scheduled in a few days later at the GP clinic but I was too unwell to get to the appointment. Looking back, I should have gone to A&E, but instead I contacted 111 on two separate occasions over one week because of my distressing cough. The first time I was advised to inhale steam; the second time I called, an appointment was made to attend an Urgent Care clinic. The nurse that assessed me told me I had a bad virus and to rest; my husband had to almost carry me in and out of this appointment. I asked if I could have a blood test, but was told that Urgent Care don’t do blood tests, and so was directed back to my GP.
I attended my GP appointment and by this stage my health had worsened in a matter of days. I became bed bound with debilitating headaches, bruises, drenching night sweats, fatigue, no appetite, nausea, weight loss, nose bleeds and bone pain. I was in clear emotional distress, holding a tissue to my bloody nose and still no clear advice or plan.
My husband urged the GP clinic to book me in for an urgent blood test, which happened. I had this test in the afternoon, then three hours later the lab called me to say that I needed to get to Urgent Care immediately to be assessed for hospitalisation because my bone marrow wasn’t functioning normally. My haemoglobin and platelet levels had plummeted, and my white cell count was dangerously high. This was the first time I was listened to.
The doctor at the Urgent Care clinic reviewed me with concern and compassion and he told me I was seriously unwell. He admitted me to the Haematology ward at the Freeman Hospital almost instantly. I arrived at the Freeman via ambulance and, after numerous tests, was told I had pneumonia, sepsis and there were leukaemia cells in my blood. I started life saving chemotherapy within 48 hours and received countless blood transfusions to complement the side effects of treatment. A bone marrow biopsy confirmed the life shattering diagnosis, that I had AML, and further testing later on during my treatment confirmed that I had AML Inversion 16, I was FLT 3 negative, NPM1 negative and no evidence of KIT mutation, so overall I had the ‘good type’ because the risk of relapse is low and it responds well to chemotherapy.
My family back in Australia felt helpless. They had no idea what to do, and couldn’t physically be there, but we were in contact every day. At the time, it felt like the world could not be bigger. My husband’s family were truly amazing at this time and completely swooped around our son and took over his care, supporting us immensely during the fight of our lives. We will be forever grateful to them all.
I finished my fourth and final round of chemotherapy in March 2018, resigned from my Occupational Therapy role that I was never able to return to and returned back home to Melbourne in June 2018 to reboot and rebuild. I have been in remission for just over one year at this time of writing and each day is a milestone. The Alfred Hospital in Melbourne is monitoring me and, as part of their policy in case of relapse, searched for and found an unrelated bone marrow match for me! So, a kind stranger in the world could potentially save my life. This is insurance I never thought I would need, and never knew it existed.
I now have a new perspective on life and want to raise awareness and give hope to those diagnosed with AML. I don’t think this type of cancer is publicised enough. It can affect any gender at any age across the lifespan and there’s no known way to prevent it. When it strikes, it’s impact and treatment is brutal, isolating and there are so many long-term effects post treatment, both physically and psychologically. Being told you have cancer at any age is horrible, but it is particularly shocking when you are young, embedded in a career you love, have financial responsibilities, a partner, huge plans for your future and young children to care for (or you’re yet to start a family of your own). I am lucky that I had my son and wasn’t planning for any more children, but this isn’t the case for so many people, and it’s still not easy having your choice stripped from you in an instant.
I hope my story encourages people to advocate for their own health and for those that you care about, especially if the primary care services appear to be dismissive. I also hope it encourages people to donate blood, register to be a bone marrow donor and to donate to charities such as Leukaemia Care because, without vital research and support, the survival rate would be even more devastating.