Written by Anita La Forgia, VIC
I had just blown out the candles on my 40th birthday cake, with everyone telling me that “life begins at 40.” Yet I had a persistent niggle in my hip that wouldn’t go away. How does a sore hip lead to blood cancer? One moment I was sitting in my osteopath’s office, and before I knew it, after weeks of referrals and scans, I was in hospital undergoing radiation treatment with a plasmacytoma in my hip. All caused by myeloma, a blood cancer I had never heard of. Until now cancer was something that happened to other people.
Coming to terms and acknowledging you have cancer is one thing; accepting it is another. Myeloma requires you and those around you to constantly learn and adapt. It’s not an easy cancer to understand let alone explain. The treatments are as unique as the cancer itself. Little by little we told friends and family, each conversation brought a wave of emotion. To ease the burden of retelling, we eventually used group messages and social media updates, as suggested by a wonderful Specialist Myeloma Nurse from Myeloma Australia.
The logistics were daunting; I couldn’t just attend an appointment “tomorrow” with school runs and sports to manage. My haematologist and myeloma nurse were amazing, even explaining the diagnosis to my boys. My haematologist told them, “Mum has myeloma bullies in her body, and it’s my job to help her fight them.” My sons went on to create a comic called “Super Doctor Saves Mum”.Myeloma can feel like living in a COVID-style bubble, protecting your immunity while the world moves on. I found relationships can shift as other peoples’ lives move forward while yours feels paused. However, I found great support within the myeloma and cancer community. Just six days into treatment I joined Myeloma Australia’s Younger Persons Information and Support Group. Later, I connected with a small group of young women ‘Myeloma Warriors’ as well as a local ‘Mums who had faced cancer’ group. The bonds I made with people in these groups reduced my feelings of isolation, increased my feelings of support and answered my questions about the unknown.
As someone fiercely independent, it was a big lesson in accepting support. I learned to make treatment days memorable with something I enjoyed like a pedicure or facemask. My friends made my life brighter with my favourite things and even decorated the hospital room where I had my autologous stem cell transplant. Our tight-knit regional community became our lifeline- friends from the Country Women’s Association (CWA) dropped meals at our gate and school mums pulled together to buy me a wig and eyebrow tattoos, allowing me to feel “more human.”
Cancer Hub provided parenting support, counselling for me and my carers, and programs for our children through Camp Quality and Canteen. Feeling safe and trusting your medical team is essential. I found leaning on my GP who truly understands me helpful, she became a critical link to hold everything together. One of my sons now dreams of becoming a GP, inspired by ours.Life after diagnosis is never the same. The truth is all you can do is hope for a ‘new normal’. Even with good treatment responses, every blood test brings anxiety- What is my myeloma doing now? My haematologist said after my transplant, “you’ve just won your first myeloma war. Now you deal with the aftermath.” For me, that aftermath includes nine months on crutches due to fractures and a 10 cm hole in my pelvis, medically induced menopause, chronic pain, digestive issues, fatigue, maintenance therapies, bone hardening medicines and, surgeries after a difficult autologous stem cell transplant.
