By Naomi Collins, VIC

5 minutes

When I was diagnosed with myeloma, I was fortunate enough to have a best friend I had grown up with in New Zealand pave the way for me. Miranda had been diagnosed a year before me and had been living in Victoria for decades after marrying an Aussie. We kept in close touch and naturally compared our treatment journeys.

When I first began this journey, I would seek out others with myeloma and would latch on to people whose journey mirrored mine in some way (similar age, demographic, myeloma levels etc) and I would risk thinking my path might be similar. It never ever is! If I could, I would go back to tell my newly diagnosed self to never start the practice of comparing with others. It’s very unhelpful! Everyone’s myeloma is different and their treatment paths also vary.

I also Googled myeloma extensively. When you’re going from not knowing anything about myeloma, it’s somewhat helpful, but my haematologist pointed out that google and AI draw their information from a wide range of sources which cannot be trusted. Again, because no two myelomas are the same, trusting what is provided via Google or other AI can unnecessarily raise or diminish hope.

I was diagnosed with myeloma in March 2023 after visiting my doctor to investigate the persistent bone pain. I was having in my femur (large bone in the upper leg). Blood tests revealed that my light chains and paraprotein were both very high and so myeloma was confirmed and treatment started immediately.

Due to myeloma bone disease, I had issues with fractures. I had fractures in my pelvis (just from sitting on the e-bike I got for my 60th birthday) and impending fractures in two of the vertebrae in my lower neck area which were treated with radiotherapy. I was also told that I have a genetic mutation that is not yet well understood but not thought to be ‘high-risk’.

In September 2023, I had an autologous stem cell transplant. I was nervous leading up to my transplant, having heard some stories of people who really struggled. But it wasn’t too bad for me. Unfortunately, I didn’t get the response I was hoping for- a ‘poor partial response‘. It was a low day receiving that news.

The emotional roller coaster continued with further treatment and tests. I tried not to dwell too much while I waited for results and then tried not to catastrophise each time I didn’t get the news I was hoping for (‘Oh my goodness this treatment hasn’t worked – that’s it for me – woe is me -why does nothing seem to work?’). I’ve certainly picked up some extra life skills along this journey. The ability to compartmentalise was not in my skill set. I’m better at it now for sure. Thanks myeloma!

A year later, I relapsed. I am a proud New Zealander, but things are tough in New Zealand in terms of the treatments that specialists can offer to myeloma patients. Treatment options can ‘run out’ quickly if you’re someone like me who keeps ending up on the wrong side of the statistics. Miranda suggested I consult with her specialist at St Vincent’s hospital in Melbourne. I did exactly that, and by March 2025 I was on my way to Melbourne to join a clinical trial. My hope then, and now, is to get to the point with whatever trial I am on, where I can base myself at home in New Zealand and travel periodically to Melbourne for check-ups and on-going treatments. I love Melbourne, but my heart is still in New Zealand.

I want Kiwis to know that there is so much hope here in Australia for myeloma patients. For me the hope comes through clinical trials. I have been reminded that clinical trial teams need candidates who meet trials criteria to advance research and treatment options in the future. There are other pathways as well. New Zealand and Australia have several reciprocal agreements which work in our favour, compared to friends I know from other countries. The process was quite straight forward to access Medicare in Australia, and I was able to start a clinical trial and treatment straight away.

Although the access to treatments here is much better, it does come at a cost. I miss my four children and their partners, my pets, my endlessly supportive friends and my home in New Zealand. WhatsApp and Facebook Messenger are great – I spend a lot of time on the phone with my children, and they like to visit us here in Melbourne.

I have found a fantastic community of loving supportive people in the local church, and a sense of purpose working to prepare weekly meals for people in the St Kilda community. A feeling I’m sure I share with many in the myeloma community, is that of having been robbed of being able to work or engage in other activities that give us purpose – at least in the initial stages. My work in the Community Kitchen, and my contributions at church are part of what make me feel useful again. I’ve even found two surrogate pet dogs who I walk and cuddle whenever I want – or whenever their owners need me to. Bonus!

I have a great life here. I know how privileged I am to be able to do this. I didn’t have huge responsibilities in New Zealand. My kids are all independent, there are no grandchildren (yet – would you hurry up already guys!) and I have a husband who can keep working in New Zealand yet still be with me often.

Everyone’s situation is different, but I want people to know that the logistical barriers to moving from New Zealand to Australia to access myeloma treatment options are not too great to overcome. Not at all!