“I decided to call my cancer the ‘little c’ rather than the ‘Big C’. I wasn’t giving it that much power over my life!” Cathy from Australia shares her AML Journey.
I had been feeling unwell for some time with low energy, bruising for no reason, and little appetite. Eventually, my worst fears were confirmed. The blood test showed way too many white blood cells. My GP told me to attend the emergency ward immediately as I probably had leukaemia. Two chromosomes, numbers 8 and 20, had gone rogue and made copies of themselves. I had a deep-seated aversion to medical procedures due to childhood hospitalisations but without immediate treatment, I would not survive this aggressive cancer called Acute Myeloid Leukaemia—this was not a great combination. Maybe this was not going to end well.
Melbourne’s Alfred Hospital was my life-saving mothership. My approach in the early days of treatment was often to freeze up and find solace in the rests between procedures, along with making my room a cosy visitor-free zone. Fred sent out group emails to keep everyone in the loop, which proved vitally important.
I had two rounds of gruelling chemotherapy. The treatment was overseen by Professor David Curtis, a noted haematologist who is still my specialist. I went into remission; however, right after the second round, I developed sepsis and came close to death as many of my organs began to fail. Fortunately, this happened at the Alfred Hospital. I went straight downstairs to ICU and was placed in an induced coma for a week. As I came into consciousness, I had the weirdest hallucinations which I can still recall in detail. I turned 60 in hospital and felt debilitated. I had to learn how to walk again in a rehabilitation hospital. The flat at Xavier College became the unlikely, but comforting, haven where I would spend my early days slowly recovering.
That first year was truly challenging. My elderly mother died, I gratefully underwent a stem cell transplant (SCT) from an unrelated Australia donor (I had two matches, one locally and another in Germany), and married Fred after 37 years together. The next year we travelled to Europe and Fred underwent a successful quadruple heart bypass.
I made a somewhat surreal list of all the various illnesses and issues I have contended with in my lifetime—tonsils removal, measles, and pneumonia in childhood. That was followed by good health for most of my adult life. Then, AML and its aftermath hit hard: sepsis leading to ICU, shingles, accidentally burning my arm, and then dealing with potentially life-threatening graft-versus-host disease (GvHD). I was hospitalised with steroid-induced type 2 diabetes and anxiety, and finally, had a small crack up and saw a therapist. I regularly experienced mouth ulcers, ongoing lung and kidney issues, mouth issues, chronic tiredness, and later dealt with heart palpitations, colon polyps, osteoporosis, and minor diverticulitis. I underwent five bone marrow biopsies, and four Hickman and PICC lines were inserted at different times. I have had at least 200 blood tests along with multiple blood and plasma transfusions, X-ray scans, and other tests, all the while learning to manage severe needle phobia.
But my AML is now cured!