Dear Bernie

Written by Lars Haakon Soraas
30
Jan

I got the news of your passing this morning. Jo had received an email from your beautiful wife, Florence, stating you died in yesterday morning in London. Even if we all knew this was coming, tears roll from my eyes writing these words. I remember reading your posts on inspire.com in the spring of 2015, shortly after Dyanne was diagnosed with this nasty disease. I remember being awed by your knowledge, intelligence and dedication. I remember meeting you in London in May 2015. Your style, gentleness, humility. So typical French, yet you had made London your home.

The way you fought this disease inspired us and countless others. You did not tell people what to do. You led the way by sharing with the world what you did, and why you did it. People could then choose to follow the same path, or go in a different direction. We, and many others you have inspired, chose your way, Bernie. We chose Bernie’s way.

What is Bernie’s way? Bernie’s way is a filled with hope and aspirations. Hope that this disease can be overcome. Aspirations for a better tomorrow, where we are alive and happy, and rid of this disease. Bernie’s way is driven by science and data. It is fueled by knowledge andresearch. But when the data stops, when there are no more treatments that are proven to work, at that junction, when most oncologists give up and send their patients home to die, there Bernie’s way does not stop. It continues. Bernie’s way then postulates that one should track the disease closely, with tumor markers and other means. And one should try novel and innovative treatments and measure their effect on the disease. Try the treatments with the most promising risk-reward profile, given the evidence, often indirect and uncertain, that one can manage to dig up. Test it, measure, test again, measure, and move to the next treatment if it does not work. Never give up. Be careful, guided by data and reason. But be also brave. When people tell you “there is no evidence showing this treatment will work in your situation”, trust your own brain and reason and dare to go down the unbeaten path. Fight the disease, fight against the dying of the light.

We will miss you, Bernie. We will remember your gentleness. Your humility. Your dedication. Your intelligence. Your bravery. We will remember you. We will follow down this road that you showed us. We will follow Bernie’s way. Never giving up. Hoping for a better tomorrow. Raging, raging against the dying of the light.

Thank you for all you have given us, Bernie.

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