Michel was a fit and healthy 42-year-old when he almost passed out while walking to work one day. The father-of-two had been experiencing neck pain, but no other symptoms pointed to any sign of trouble. After many tests, Michel was diagnosed with Non-Small Cell Lung Cancer (NSCLC), EGFR mutation by chance in May 2017. Now, Michel calls himself a patient advocate, fighting for change in the lung cancer space. And he is encouraging you to be an advocate, too.
Michel recently attended a two-day International Lung Cancer Survivorship Conference in Washington, DC designed for people living with lung cancer and their carers to connect, hear from experts and learn ways to manage lung cancer and the journey.
“My experience means I have a better understanding of what cancer is in general and I’m excited to bring awareness to not only Australia, but the world on how lung cancer patients need the same investment in research and access to treatment and support as any other cancer,” Michel said.
Michel sat down with Lung Foundation Australia to talk about what motivates him to undertake his advocacy efforts and what this means as a husband and father to two beautiful daughters.
How can someone get involved as a patient advocate?
This is an interesting question because you become an advocate by default as your knowledge grows – you go through stages of evolution. As advocacy comes in many forms, always ask yourself, ‘What can I do? What am I capable of? Can I do all of these things?’. The answer will be different for everyone.
For me, the first stage was when I was diagnosed – I was advocating for myself and building my knowledge so I could understand exactly what I had. Through this journey you may find there is an area that interests you and forms part of your advocacy efforts. This could be by sharing your story via a submission to the Pharmaceutical Benefits Advisory Committee (PBAC) or through fundraising. It may be via a trip across the world – like me when I attended a conference in Washington, DC to connect with other people and learn about the latest research and treatments available.
What I’ve learnt along the way is how important it is for me to make sure I balance my advocacy work with what I want to do with my family. I don’t want to lose precious time with my wife and daughters. So, think about the people around you that it impacts and make sure you’re fulfilling your personal needs first and foremost.
What do you feel needs to change in the lung cancer space?
It’s not a good sport to be playing, this one. It’s tough – there is a lot that needs to change and there is a lot to be learnt. The way research is supported and how we get trials and medications to market quicker, particularly new medications, is an area that needs improvement. Some medications are allowed for one thing, but not another, even though researchers think it could work. Why not try it? It might mean more people could benefit from these medications sooner, in two years rather than 10.
Another much-needed change is eliminating the stigma that’s constantly there. I have never smoked yet I’m constantly confronted. It shouldn’t even come into the conversation. It doesn’t matter if you have or haven’t smoked, you still deserve equal access to support, care and treatment.
What has been the most rewarding aspect on your journey?
As strange as it sounds, there are many positives I can see now, from both a personal perspective and within our family. It has certainly brought more drive to what we want to do in our lives, the simple things have become more significant and I feel more grateful for them.
I’ve found I am looking at my loved ones through different eyes. I want to make sure I witness everything with my girls – from the big to the small – make the most of the time I have with them and enjoy it. I’m more focused on goals like travelling with my wife and being a parent with her.
Having the disease has also revealed a new path for me and what I want to do in the advocacy space, it’s like being part of a new club. It excites me having commonality with other people and seeing what’s ahead. If you’re open to it, a personal hardship like this can become the catalyst to extend yourself further in your life than you thought you were able to. It can show you what you’re made of. That’s what it’s done for me.
What are your goals?
I am lucky that I feel normal, apart from side effects of my medication, and I’m hoping it stays like this for a while. People say to me, ‘Michel, what is that one thing you want to do in life?’. I feel a bit funny about that question. When you’re told you have a limited number of years to live, you want to fit your whole life into that. It’s not just one big thing I want to do, there are many!
After my diagnosis we went through this painful process of letting go of some dreams. But we’ve since learned that this is not the end, so now we’re dreaming up new ones. I have goals for my family and with my wife, plans to travel, and visions for my career. I considered studying nuclear engineering, even after I was diagnosed.
How do you stay motivated, passionate and a keen advocate even on the hard days?
It took me a year or so to really come to terms with my diagnosis. You tell yourself you’re ok, but it takes time. Through my initial diagnosis and treatment journey, there were many moving parts. For me this meant more than just me feeling alright – it also included how my wife and my children felt. That was just as important to me. It has been hard, but we’ve seen the light and how good life can be, even when living with cancer.
To keep perspective, I reflect on when I was first diagnosed and how I felt versus how I feel now. At first, I didn’t know what was happening, now I do and feel reassured that my health professionals are monitoring me – I’m in great hands and the moment my health status changes, my healthcare team will be ready to act. This helps me to feel prepared and gives me some sense of control. Being mindful of how I look at things and challenging myself to take a different view helps to keep the negative thoughts at bay most days.
I feel blessed that I have my wife, Jen, by my side on this journey. We encourage each other through our faith and try to keep each other motivated. To us that’s really important. Some days she is feeling hopeful and positive and I gain strength from that, and other days it’s vice versa. It’s important to allow yourself to feel whatever you’re feeling, knowing that feelings come and go. I take time out for myself when I need to, and then remind myself of the bigger picture and what I want to contribute through my advocacy. This balance helps me to stay motivated and keeps that passion for advocacy alive within me.
We’re here to support you on your journey. Contact our Lung Cancer Support Nurse via freecall 1800 654 301.