Living in free fall – and fighting for better
My blood cancer diagnosis came as a shock, as it does for many. I was told I had a 40-50% chance of survival. Immediately, my life was in free fall.
At first, I thought the falling would continue for whatever time I had left. But then it didn’t. I was wrapped in support.
My family stepped up front and centre. Other blood cancer patients shared perspective and kindness. Blood Cancer NZ offered considered advice and a kind ear, and the medical team showed me there was a way through. Together, we got the cancer under some control.
But then I couldn’t recover from the treatment, so it couldn’t continue. Only one option remained: a stem cell transplant.
That’s when the mess started. I was put on a long waitlist, relying on compassionate access to an unfunded medicine to keep the cancer controlled in the meantime.
Seven months later, when my place on the waitlist finally came up, we found the cancer was back in force. I couldn’t have the transplant as planned.
I was in free fall again.
The medical team did everything they could, and 42 days later, they got me back to transplant readiness. I was relieved, but I was so sick that survival felt unlikely.
Stem cell transplant is brutal. I cannot even describe how hard it was on me, on my wife bearing the load beside me, and on my son.
But I lived. I am grateful.
Some patients I met during my time on the cancer ward have had their voices silenced. Some fell right through the cracks in our system, and they simply can’t tell their stories now.
Shortly after my transplant, my father was diagnosed with leukaemia, and his age meant a stem cell transplant wasn’t possible. He died just weeks ago as I sat by his side.
I now fear for my son. I need to know that if he ever finds himself in that same free fall after a blood cancer diagnosis, he will get the best shot at the best outcome.
Blood Cancer NZ helps our community to speak with one voice. They give a voice to those who haven’t made it. And they advocate for the New Zealand families who will face a blood cancer or a blood disorder in the future.
