My name is Jay. I was diagnosed with Stage 4 Adenocarcinoma Non-small cell lung cancer at age 39 in 2011. The cancer was in my lungs, lymph nodes, bones, and muscles. Since my diagnosis I have also had cancerous fluid around my heart, in the lining of my lung that needed to be drained, and brain metastases. I have had five lines of treatment including chemotherapy, radiation and drugs in clinical trials. In 2013 I found out that my lung cancer was had the ALK positive gene mutation
The diagnosis of lung cancer was devastating. It was a totally nerve wringing experience. Our family and friends were equally shocked, confused and devastated. Without any real standout risk factors, lung cancer simply wasn’t expected, anticipated or even remotely contemplated. I was a young, healthy and generally fit person. The day I was diagnosed I felt like I had been hit by big piece of space junk that had simply come out of nowhere! What were the chances of me getting cancer?
My wife was 37 weeks pregnant with our second daughter when I was diagnosed. It was a whirlwind of emotions dealing with the diagnosis, yet also celebrating the birth of our second daughter and also finding the courage to be brave for my eight year old at the time. My ultimate instinctive goal in all of it was to just protect my child. The use of the word, and diagnosis of cancer, in general can evoke fear in a child. But lung cancer in particular was something I felt I needed to protect her from more so because of the negative visual images of this disease that she had been exposed to through media over the years.
My initial response was to just get up, and get on with my treatment. I didn’t grieve straight away. I began my grieving process 2-3 years down the track when several treatments had failed me, and I was running out of time and treatment options.
Throughout my journey with lung cancer I chose to surround myself with close family and friends. Socialising with anyone and everyone became difficult as fatigue was (and still is) a huge issue for me. My lungs don’t cope well with the colds and flus, so protecting myself from these complications has restricted me somewhat in some social circumstances. At times and during some treatments where fatigue has been a big issue I have made the decision to preserve my energy for my children and my wife.
I became very protective of my hope. My hope was like gold to me and not something I would allow anyone to take from me. I didn’t feel like I wanted to see people who didn’t share my feelings of a hopeful future. I didn’t want to be influenced with their “face of defeat”, “sadness”, or sympathy. I choose to live my life positively despite what stands before me and threatens me, I chose to make the most of all my capabilities, and see all capabilities no matter how limited at times, in a positive way.
I was inspired by the words “Who Dares Wins”, and I learnt to transform this in my daily life by “daring myself” to have a go. My dares were not big, grand desires or dreams. Mostly they were sensible, achievable goals within my capability. In fact, I believe that smaller goals are harder to achieve – some would question if a goal so small is worth it, or rewarding enough to even bother. I learnt to think small and rejoice in small successes and goal accomplishment. For example, I would dare myself to go for a walk, when I could only walk for one or two minutes, I would tell myself two minutes is good, two minutes is still worth it, my goal is a good one! I would then dare myself to do it again the next day. Before I knew it, I would have a great week. I met goals, I made new goals and I wasn’t doing nothing.
Living with lung cancer has challenged me physically, mentally, and economically. The economical and physical impacts have been long term. Physically I cannot do what I used to. I get short of breath easily, cannot walk inclines, get fatigued quickly (especially if exposed to heat or sun), and I am unable to travel internationally. I have missed events in my children’s lives and in the lives of many of our families and friends due to being hospitalised at certain times. One year I was in hospital for Easter – that was quite tough. I always chose to see hospital however as the place that actually got me better, and well again, not just as a place where I go when I am sick. All these things have been manageable, they are adjustments, and I choose to see them as my “new normal”. Mentally this disease has challenged me intermittently – usually when I stop responding to my treatment and I deal with once again my life under direct threat, unless I could move to another treatment that might work to control my disease again. Spiritually I am stronger and my faith has only grown and enriched my life! My faith has been a pivotal part not only of my survival, but in my being able to live with the ongoing uncertainty of this disease.
I am a great believer that where there is hope, there is life in trying. I don’t believe “hope” is false. Hope is what keeps me going every day. I believe in scientific breakthroughs. I am a testament to scientific advances already. Over half of the treatments provided to me in my near five years survival have been drugs in clinical trials. My experience of clinical trials has been excellent and I personally owe my life to them.
My wife has been my rock through my journey with cancer. She taught me to become my own advocate. This has helped me so much when hospitalised as I learnt to voice my concerns, and to ask questions. She taught me it is okay to get second opinions and to seek treatments beyond standard care. It was my wife who encouraged me to explore clinical trials as a valid option for treatment.
What I have learnt from being affected by lung cancer: Find your new norm, embrace it and run your own race!