LIVING WITH ACUTE LYMPHOBLASTIC LEUKAEMIA
“I was given the shock diagnosis that I had blood cancer“
“I had just passed my 6-month probationary period at work and life was great. Suddenly, I began to feel unwell and very quickly my life turned upside down.”
Road to Diagnosis
On a Friday night whilst cooking dinner, my general practitioner called after having been for some routine blood tests, and said I had to immediately go to Emergency, as I was at risk of bleeding out. I spent the weekend in hospital undergoing a multitude of exploratory tests.
I was given the shock diagnosis that I had blood cancer.
On Monday, I was given the shock diagnosis that I had blood cancer.
My journey living with Acute Lymphoblastic Leukaemia (ALL) began. From meeting my treating team, to learning about treatments such as chemotherapy, management of side effects and the supports available, I began to realise what lay ahead. I felt fortunate to have a reassuring and supportive haematologist looking after my care.
I felt every physical and emotional pain along the way. I started journaling all of the information and treatment plans that I was being given, as it was a lot to take in.
Connection came through meeting another person living with ALL…
During treatment, close friends and family were with me daily, either through face time, phone calls or daily visits. Daily routines were important, along with artwork from my daughters (aged 11 and 12 yrs at the time) placed around the hospital room and an essential oil diffuser.
There were many tough times including writing a will, talking openly with my daughters that I may not survive and coming to terms with death. Losing my hair due to treatment was also a big shock and I struggled with this loss of identity.
Connection came through meeting another person living with ALL and we developed a close friendship, sharing our feelings, treatment challenges and walking the ward together each day.
Stem Cell Transplant
In April 2021, I travelled to Sydney from Wollongong, to start preparing for my Stem Cell Transplant (SCT).^ This was an incredibly tough time, as I was isolated from friends and family. While the SCT felt like an anti-climax after previous chemotherapy treatment, I prepared myself for the nasal tube and the following months of low energy and constant fatigue.
During this time, the Leukaemia Foundation provided wonderful support, housing myself and my family in an apartment close to the hospital, as our home was too far away from the hospital to travel back and forth.
Post SCT,^ I was slowly navigating my way back to work when I was diagnosed with respiratory syncytial virus (RSV), which lead to pneumonia. During this time, my platelets dropped quite significantly and my doctor was concerned the ALL had returned. Two weeks of trying to be positive followed, waiting until my RSV was negative, so I could have my bone marrow biopsy. Thankfully, the test was negative although it identified that I had immune thrombocytopenia (ITP) and am now on medication to suppress my immune system. It’s a waiting game but not life threatening!
The New Normal
I consider myself a positive person, have always been relatively healthy and have a good outlook on life. While my return to work has been delayed, I am hopeful I will be able to transition back soon.
Today I can say that I feel the joy has come back into my life, I take each day as it comes and enjoy the simple things in life that some take for granted.
^ Stem Cell Transplant, sometimes referred to as bone marrow transplant, is a procedure in which a patient receives healthy stem cells to replace damaged stem cells. Blood stem cells are produced in the bone marrow and can become any kind of blood cell the body needs.