This story is a first-person account of a journey with acute myeloid leukaemia (AML), contributed by a member of our wonderful community – all words are their own.
I relapsed on Wednesday, 12 February 2019.
We had been seeing a steady drop in my platelet levels during my monthly check-ups. I had a bone marrow biopsy and there it was: my blood cancer, acute myeloid leukaemia (AML) was back. Two days later, I was back in Canberra for more chemotherapy. I was told I would need a bone marrow transplant and the global search began for an unrelated matched donor.
I would also need to move to Sydney to have the transplant. My family were so lucky to have a Leukaemia Foundation unit to stay in, provided completely free-of-charge. In June I had my transplant from a perfect match from the UK, who we nicknamed ‘Mr Potter’, after the boy wizard himself.
Relationship breakdown
During the two-year period I was in remission, the relationship with my partner, Trevor, completely broke down. When I was in hospital, he had to take on the brunt of working full time and looking after our little girl, Haylee. It eventually clicked that I wasn’t who I was anymore, and he couldn’t be who he was anymore. We went through a lot …but my relapse seemed to put everything back into perspective. The minute we found out my blood cancer was back, he told me, “I’m here and I’m not going anywhere” and he has been ever since.
Out of sight, out of mind
Up until the point I was diagnosed in 2016, my toddler, Haylee, and I were constantly together. She was with me 24 hours a day, seven days a week from the time she was born. And then, suddenly I was gone. Sometimes I would try video chats from hospital, but she’d get so upset because she’d see me and then, next second, she wouldn’t see me. Sometimes it was just better to be out of sight, out of mind.
The pain of isolation
Having to move to Sydney, a two-and-a-half-hour drive from my hometown, Goulburn, was incredibly isolating. My whole world was back home; my friends and my family. My mum and dad had even moved there in 2017 just after my first diagnosis. I was in so much physical pain that I didn’t want to see anyone. I really retreated into myself during my transplant. I was on a lot of medication to manage the pain; pressing the button every five minutes for more relief. My memory of my entire time in hospital is so cloudy.
Identity crisis
I had a little bit of an identity crisis when I was in hospital because of what my body went through. I didn’t even recognise myself in the mirror anymore. I swelled up. I ballooned. I was huge. I had mucositis and huge welts on my mouth. I couldn’t physically talk for about three or four weeks. I had no way left to communicate with my little girl back home.
The transplant dragged me to hell and back, but I eventually came back on top and was told I was in remission. I thought again I was AML-free…but sadly that’s not the end of this journey. This time, I would only enjoy a year before it came for me again.
