When I was 16, I moved from NSW to sunny Queensland to start a new chapter of my life, consisting of good times, sunny days and warm weather.
I had it too. I travelled, enjoyed time with friends and family and eventually started a family of my own. I am a wife to a wonderful man from Saibai in the Torres Strait Islands and the mother of three beautiful children, aged 15, 17 and 29.
I enjoyed a rewarding job working in the travel and tourism industry until 16 years ago when I was granted my dream job of working in Community Services, in particular working towards protecting and nurturing vulnerable children.
In 2016, my father succumbed to cancer. It devastated me as we were close. I nursed him for 12 months before he left us. Little did I know that my own body was preparing for an internal battle. One year to the month after Dad passed, I was rocked with my own diagnosis: incurable non-Hodgkins lymphoma and rare AL Amyloidosis. I had only just turned 45. While non-Hodgkin lymphoma is usually curable with treatment, sadly, mine is an incurable form of Lymphoplasmacytic Lymphoma which is an uncommon but aggressive form of B-Cell Lymphoma. AL Amyloidosis is an abnormal protein that is produced in the bone marrow and can be deposited in any tissue or organ, leading to its destruction. In my case, the Amyloid build-up affected my kidneys. Not much is known about it as there are only about 12 cases per million people. “Why me?” I asked. I am vegetarian, eat well, and lead a healthy and holistic lifestyle.
Sandi with her Mum and late Dad
And so began the roller coaster.
I underwent chemotherapy in Brisbane for 5 months leading to my cancer going into remission and thus allowing the Amyloidosis deposits to remain dormant. I truly thought with my healthy lifestyle and the changes that I had made to nurture my mind and body, that I could make the remission permanent, and that I had kicked it to the kerb. I continued to be monitored monthly. For the next four years, I was not only able to participate fully in the daily lives of my husband and children, but I was also able to further my career in the private sector of child safety, which although at times could be emotionally draining, enabled me to make a difference to young lives, which has always been a priority to me.
Covid affected my husband’s employment, so we eventually relocated to the Pilbara. One month after arriving I took up a position with the Department of Housing to manage a remote aboriginal community. While this position was not primarily child focused it gave me immense joy to know that I could make a difference in this community and help break down some of the barriers.
My Brisbane GP had referred me to visiting specialists in the region, so I was able to continue regular monitoring of my condition. Four weeks into my new position I received the dreaded phone call…’Sandi your kidneys are only functioning at 20%, you need to see a haematology specialist immediately.’
Sandi and her husband on their wedding day
Within two months I was flying weekly to Perth from Karratha to undergo Chemotherapy yet again. My kidneys continued to deteriorate at a rapid pace, and I was told the damage was already done and I would need to commence dialysis in the very near future. In September 2022, with my kidneys only functioning at 10% I began the journey of dialysis while continuing chemotherapy. This involved weeks away in Perth from my family to begin the training for home dialysis. There were many obstacles along the way, including an abnormal reaction to one of the chemotherapy drugs which resulted in ulceration and bleeding from the eyes and a gastrointestinal bleed caused by medications which resulted in me being airlifted to Perth by The Royal Flying Doctor Service. Due to my weakened immunity, I developed a serious infection in the dialysis entry point, leading to further
surgery and the removal of the existing port to be replaced by a temporary haemodialysis port through my neck and chest. These are just a few of the complications that I have experienced over the last three months and with my current diagnosis now being classed as end-stage renal failure (4% kidney function), I am constantly facing an uphill physical, emotional and financial battle.
Sandi asleep in her hospital bed
My health no longer allows me to work due to lethargy and continual travel for treatment because of the remote location we are living in. My husband takes time off work to get me to treatments, and while his employer is understanding and supportive, there is only so much paid leave he can take.
I am only 51 and I want to spend quality time with my family and friends and have the strength to get myself back into remission once again. My hope is now to go down the path of a kidney transplant within the next twelve months, which is in itself a daunting prospect and an uphill battle when you have an incurable disease. This can only happen if I am able to get back into remission.
Sandi with her family
Now I am here. An emotional yo-yo. I have supportive family and friends who have helped me emotionally and financially as much as they can. I am a private person and have never been one to ask for help as I am usually the person giving it myself. I don’t want more than anyone else. Just some quality time with my husband…. or to make memories with my kids, and see my kids have kids. A great outcome would be to shed some light on and gain more knowledge about my rare disease to allow fellow sufferers an easier journey.
Any help you can give is appreciated and as my health restores, I will pay it forward.