Myeloma didn't stop my game - Myeloma Australia

Written by Lynne Hayhow, NT

I consider myself to be one of the lucky ones! I had been a regular blood donor, donating over 100 times when they noted my ferritin was too low to donate. I wasn’t allowed to continue to donate until it was a normal level again. Followed up by my very diligent General practitioner (GP), I was eventually diagnosed with a renal cell carcinoma (RCC) in April 2021. Soon after my RCC diagnosis I had a radical nephrectomy (kidney and tumour removal). This was my introduction to the Alan Walker Cancer Care Centre in Darwin, where I would eventually also have treatment for my myeloma.

My husband, Wayne and I had moved to Darwin 14 years ago. Living in remote Australia worked for me as I didn’t feel lost in the system. My team were happy with my progress regarding my RCC but through routine blood tests in January 2024 and scans a small lytic lesion was found on my lower spine, this confirmed myeloma and so my journey began.

I was fit, well, working full time and not in any pain at all when I commenced radiotherapy. I had no pain, fatigue, nausea or any other symptoms. I am a ‘glass half full’ person and support from my amazing husband, my interstate family, my friends and my workmates ensured I stayed positive.

I am an avid lawn bowler and the encouragement from my club, and the state, meant I was still able to compete regularly and try out to represent Northern Territory (NT) in a national lawn bowls event. After a few months of bortezomib, lenalidomide and dexamethasone (VRD), I travelled interstate to Adelaide with Wayne for my autologous stem cell transplant. Luckily, the collection went well and we spent a few days in the wineries with family before returning to Darwin! I continued to exercise regularly, including walking, pool work and a home exercise program. I also continued to practice my bowls and was selected to represent NT at a bowling event in Queensland… providing I was well enough. What an incentive!

Wayne and I returned to Adelaide in August and of course because we were living in Darwin, we do not do cold! My transplant went very well; I didn’t stay in hospital but was visited in an apartment which was walking distance to the hospital by a nurse twice a day. This cut down my exposure to hospital bugs. I had one night in hospital due to having a temperature of 38-degrees which mean I had a night of intravenous hydration and antibiotics until I was well enough to return to the apartment.

Early on, a nurse told me to take the anti-nausea medication whenever I was going to eat anything, and I credit her with getting me through without any nausea. I was fatigued but also couldn’t sleep, which I put down to the dexamethasone and had all the other symptoms, except for pain. I tried chair aerobics and would meander around the apartment complex but that was the extent of my exercise. I couldn’t even walk the length of the bowls green!

We had six weeks in Adelaide and returned home four weeks before I was to compete in the four-day lawn bowls competition interstate, at Broadbeach, Queensland. I made it! And in the end, competed in two consecutive competitions over eight days. I was exhausted but I truly believe that having that carrot dangling ensured I did all I could to remain as fit and as well as possible. That, and the purchase of our new motor home the same week, were big incentives to keep pushing and not dwell on the negatives.

I have two bowling friends who also have myeloma, all of us at different stages, with different reactions and treatments, and all of us blaming chemo-brain for lots of stuff! While nothing is guaranteed of course, my future looks bright. We have just returned from Tassie, representing the Territory in bowls.

What next? Well, with the support from my medical team, Wayne & I are planning on a six-month road trip. It is on my bucket list that we swim with the Whale Sharks in Exmouth. Planning regular blood tests, pre-organised medications and telehealth appointments with my specialist will be part of the trip but it is a small price to pay. I may have myeloma, but it does not define me. It is simply part of my story.

Myeloma didn’t stop my game