Warrior for Life

The last tattoo to complete my arm sleeve is a warrior woman. She’s holding an intricately crafted hilt.  Staring forward with an expression that suggests she is calm, considered, resilient, and ready for battle.

I chose a warrior woman as a symbol of my commitment to protecting myself from the actions of others, and more importantly from myself in response to these actions. Having navigated my toughest year, she was to be my daily reminder that I have the tools and strength to once again be vulnerable. To connect, to protect, and ultimately, to flourish.  

My warrior woman became a part of me in February 2023. After the year that was to deliver my greatest and most valuable life lessons. Or at least, so I thought. Little did I know that such a year would lay ahead of me.

We are here for one short lifetime. One story. With each chapter in our story fundamentally created by a single seemingly fleeting moment, and each fleeting moment having the capacity to create a different storyline. I have learnt that we must respect the gravity of every moment, big and small. And whilst we can’t control who or what come into our lives, with the right mindset and support systems we can largely control how these things impact us.

Some chapters in our life bring us the purest of joy and fulfilment. Others, unfathomable sadness, anguish, and all the emotions in between. All delivering lessons and tools that provide the foundations to make the most of our one journey. To help us navigate pathways that serve us best. Our experiences, our achievements, and our relationships. Our connections, to self and to others.

I, like many, thrive on connection. To connect with myself, enriching my own existence. And to touch the lives of others in a positive way. Connection that extends much deeper than the law of reciprocity, as reciprocation need not be obtained. But to behave in a manner that simply honours me and my values.

As my latest tattoo sitting proudly in isolation on my other forearm reminds me many times a day, “LET THEM”. Let them do them, you do you. Choosing to behave in a manner that honours you, rather than considering what you may face in return. Maintaining a mindset that can turn others’ actions that would otherwise lead to negative emotions such as disappointment, anger, sadness, or anguish, into nothing more than an understanding that another person’s behaviour has nothing to do with you and everything to do with them. And that’s ok. Learning to cut free what doesn’t serve you, and to forgive that which otherwise should or could.

My greatest learning has been to love and respect myself above the selflessness of connections that are underpinned by such a mindset. This is critical to a true warrior’s success. Setting boundaries that protect you and those you have been given the privilege to protect. Letting them do them does not mean you allow selflessness to lead to self-depravation, or forgiveness to be embraced at your own detriment.

I am so incredibly grateful for each chapter in my story. I have thrown 200% at everything life has to offer from a very young age. I’ve proactively prioritised being strong, but kind. Hard, but soft. Steadfast, but flexible. Successful, but humble. I have valued every connection and every lesson. This proudly underpins my story.

Whilst I may not have control over how each chapter starts, I have spent my life prioritising being the best version I can present, and the last eighteen plus months in particular building the skills to better author each of my chapters to a desirable close. I have learnt that although the fleeting moments may be serendipitous, the pathways can be somewhat controlled. Through control over your faith in self, your behaviour, and your mindset. Skills that have hopefully best prepared me for my most challenging chapter yet.  A chapter that will be defined by my ability to remain calm, considered, and resilient. To be a warrior.

On the 11th of October I was diagnosed with Stage 3 Multiple Myeloma. Treatment commenced two days later. Based on my type and genetic subtype of myeloma, my disease is deemed “high risk”. My treatment plan is aggressive.

Myeloma is a relatively rare blood cancer arising from plasma cells within bone marrow. In keeping with my affinity for minority groups, I have now joined the 15% of blood cancer patients and 1% of all cancer patients that share this diagnosis. The 2,500 or so Australians each year that learn this fate. The 250 or so whom would fit within two decades of my age bracket. Minority badges I could have done without. But here we are, with this chapter already in draft. And whilst I can’t control what this chapter entails, I have complete control over how I will navigate it.

Currently a terminal cancer, the truth is that this is likely to feature in all remaining chapters of my story. Without a cure, I will live with myeloma and all that it entails for the rest of my life. Targeted chemotherapy, stem cell transplants, clinical trials, and an assortment of other drugs and therapies are all part of my new normal. Treatments are rapidly evolving. The diagnosis and prognosis of myeloma is diverse. Increasingly, people with myeloma can live longer and healthier lives. Terminal has become incurable. Incurable is becoming chronic. One day, chronic will become curable.

Whilst myeloma sounds depressingly bleak, I’ve committed to the belief that it isn’t, regardless of the journey ahead.

We are all terminal. Not one of us is getting out of this lifetime alive. Our time will end. For many, the end won’t come naturally. There will be intervention of some means. Some stories will be shockingly cut short. Too short. Some will involve battles of survival. So many of us will be directly or indirectly impacted by journeys like the one I now face.

My diagnosis is a mid-life reminder that time is uncertain. I have been put on notice. Notice that comes with a greater awareness of life’s uncertainty and fragility. Notice that my end is unlikely to come naturally, and intervention will be a lifelong commitment. I have had all but a fleeting glimpse of what this will entail. For the past three months I have had a taste of how awful this thing can be. I am acutely aware that much worse is yet to come. I will work for my survival. The success of which will be tragically dependent on new treatments linked to commercial and political plays largely beyond my control. And whilst my story may be cut short, I will not allow it to be too short. Because too short implies that it will be lived unfulfilled or incomplete, and neither could be further from my truth.

My diagnosis and everything that comes with it is my new normal, and I intend to embrace it like a warrior. I will ensure great outcomes come from this journey. For me, and for others.

I intend to educate, advocate, and represent my new community to the best of my ability. I intend to join those that lobby for Australians to access new treatments. It is incomprehensible that these doors open so slowly, too slowly. And sadly, to so few, too few. Over 1000 Australians die from myeloma every year. At around 40% of those diagnosed each year, these numbers are far too high. Australia is falling behind in treatments for myeloma, and we must catch up. A cure for myeloma will come in my lifespan, and I intend to play my part to help us get there.

As I navigate social groups that provide support networks for people with myeloma, I reflect on whether this was the chapter I had to write. With my previous chapters best preparing me to ensure that my story, and the story for many others, has a much happier ending. Referred to within the community as myeloma warriors, it seems that maybe this is where I was meant to be.

There is so much positivity in this community. Propelled by advances in treatments that are helping many live long and healthy lives. But without a cure the success stories are tainted by losses. Tragic losses. Underlying variables making every individual’s journey different. Uncertainty and the next blood test results always looming. Myeloma warriors navigate living under a dark cloud with the support of one another, their medical teams, community groups such as Myeloma Australia, the promise of further treatments, and ultimately the glimmer of hope for a cure.

Please follow my journey as I embark on living with myeloma. Once past the initial heaviness of my diagnosis, I hope you find nothing but inspiration. Inspiration for how you too can find a deeper appreciation for the truly important things in your one life. My hope is to bring you clearer perspective without the diagnosis. What a gift that would be.

For those of you who feel you want to help, I only ask for two things. Firstly, if I’m someone you care about, stay connected. Send the odd message, or call. I cannot tell you how much these connections mean to me and my journey. They are the foundation of the strength I’ve shown this diagnosis and treatment to date. Secondly, when the time arises and I ask for support to help create awareness, to assist organisations in delivering cutting edge treatments in Australia, or to strengthen the search for a cure, show your support through sharing posts or making the appropriate donations. 

Myeloma Australia is an amazing not-for-profit organisation focused on raising awareness, facilitating research, supporting through education and Myeloma nurses, and advocating for Australian governments to make advanced treatments available to Australians living with Myeloma. I will ask for support towards Myeloma Australia throughout my journey.

I will close with this message.

Whilst the average age of those diagnosed with myeloma is 70 years, the community of younger patients is growing. Our younger families, partners, and friends are scared and have every right to be. Having had the pleasure of recently meeting two other younger myeloma warriors, what struck me most was the commonality in our diagnosis. Whilst our conditions are all vastly different, our younger bodies were breaking down to this insidious disease. Our breaking bones, high cancer concentrations, and extreme blood results were all setting the scene for a fight. Each of us were ‘lucky’ to have found myeloma before much more extensive damage was done. Each of us now on very different journeys to try and secure the current myeloma nirvana - remission and maintenance. Hopeful that one day, we have access to a cure.

I vow to tackle myeloma with an unwavering focus on what I can control. My general health and wellness. What I eat, how I exercise, when I sleep, and what mindset I adopt. And whilst our ability to beat myeloma depends on much more than what we can control, these foundations will ensure my medical team face no limitations in treatments that are available to them. I am under no illusion that the treatment pathways will be challenging. As I embark on a tandem stem cell transplant this year, I am educated on what lays ahead for me. I have had a taste of what treatment can do to my body, and I wouldn’t wish that on anyone. I can see from the groups I have access to that this journey will be far from an easy one. But with my ongoing commitment to general health and wellness, and increasing access to the latest treatments, rest assured my journey can be a very long one.

Much love, S x

Please refer to the following resources for actual information and statistics.

1.       Multiple Myeloma Australia https://myeloma.org.au/

2.       Australian Government Cancer Australia https://www.canceraustralia.gov.au/cancer-types/myeloma/overview

3.       Cancer Council https://www.cancer.org.au/cancer-information/types-of-cancer/myeloma