Written by Ken Guy, QLD
The warning of serious illness came during a visit to Sydney in mid- 2000, when I experienced chronic back pain that forced me to return immediately to Brisbane. My general practitioner (GP) referred me to a clinical haematologist at the Mater Hospital. I was initially given 4 years and was told I was lucky if I lived to 2005. That was 26 years ago now.
A day later, after an MRI scan at the Mater Private Hospital arranged by my specialist, my diagnosis of myeloma was confirmed. I began chemotherapy, using an old treatment protocol called VAD (vincristine, doxorubicin and dexamethasone). Despite this VAD treatment, my paraprotein remained high. My specialist advised I start preparation for an autologous stem cell transplant.I entered the Mater Hospital in 2002 and underwent my stem-cell collection (also called stem cell harvest) which took over two days. 3.65 million of my cells were collected and sent to the Wesley Hospital to be frozen at -150c. I began the conditioning phase of the stem cell transplant in 2003 the day after my 65th birthday! This involved an infusion of chemotherapy called melphalan which reduced my immune cells to zero. This increased my risk of getting an infection. I also had constant nausea and the only food I could keep down was a chocolate flavoured nutrition drink called Sustagen. Even cleaning my teeth would cause vomiting!
Four weeks later I emerged from the Wesley 19 kilograms lighter, and not feeling well at all. I had more ambulance trips to the Mater as I would have recurring rigours. However, the transplant did control my myeloma for five years.
The entire process put a heavy burden on my wife, Gracie. Gracie at the time was not on any pension, having left her 40 years of employment with the government and was now taking care of me 24/7. She has been my primary carer since the day I was diagnosed. 
Fortunately, in some ways, being a couple unable to have children meant we could focus fully on my health. Soon after I returned home from my transplant, things suddenly worsened. I collapsed again, and was found to have three bacterial infections (Seratia, E Coli, and Salmonella). An ambulance took me to hospital where I stayed for a week including three days in intensive care (ICU).
I had already begun monthly infusions of a “bone strengthening” medicine known as a bisphosphonate, its brand name Aredia, (pomidronate). These appointments continued as monthly visits to hospitals in Brisbane and Nambour.
My wife and I had plenty on our plates with appointments, blood tests and bone marrow biopsies. During my treatments, my wife had to stroll around the supermarket opposite the hospital for several hours, trying to stay awake so she could drive me home. At the time we lived in a town called Maleny in the Sunshine Coast Hinterland. With the regular long drives to Brisbane and having to dodge speeding vehicles, Gracie finally said, ‘I can’t do that drive anymore’, so we transferred my treatment sessions to our local hospital, Nambour General.
My myeloma situation appeared to be in a state of temporary remission for quite a while. I was monitored throughout this time with blood tests. I was taking lenalidomide (Revlimid) tablets and was eventually told by my Nambour haematologist that my paraprotein levels were steady. 
Suddenly unsightly secondary skin cancers began appearing on my scalp. My radiation oncologist at the Adem Crosby Centre at the Sunshine Coast University Hospital (SCUH), prescribed treatment using radiation. Over two years, I underwent 70 days of radiation treatment. At the end of radiation my scalp was clear, and the radiation oncologist told me the treatment was a success. Unfortunately, the skin cancers erupted again, causing my scalp to become non-healing over the past year. My myeloma drug lenalidomide, was stopped and I was not on any myeloma treatment. My Nambour haematologist continued to monitor my myeloma and has assured me that if she notices a ‘spike’ she will put me back on the lenalidomide.
In Apri l 2025 a graft operation was performed, but unfortunately the graft did not take. As a result, I have had a non-healing scalp wound for just over a year. Nurses from Range Care have been dressing my wound three times a week, and its expected these will continue indefinitely. My wife and I have been assessed for My Aged Care Level 2 packages that help us with our home care. We use Range Care transport to take us both to Nambour and SCUH, and other medical appointments. Our home and social lives are largely centred around those appointments.
We’re fortunate to have close friends within our Resort who invite us to their social gatherings. Trips by road to visit other family members are now becoming rare. Gracie still drives our small Honda Jazz, but I surrendered my driver’s licence three years ago. Being an ex-Radio TV journalist, I have been keeping busy with writing my own memoir book, ‘One Voice Among Many’. 