Survivor Sadness
Last week was a huge milestone for me personally; I was declared ‘cured’ from my lymphoma, after 3 years of treatments and ultimately, the successful treatment in a clinical trial for CAR T-cell therapy. Among the many congratulations and messages of support, which were wonderful, was a constant refrain: “You must feel so happy.”
If only human emotions were that simple.
The reality is, emotions are a complex mix of sometimes opposing feelings. Yes, I feel happy. I also feel relieved. However, I also feel intensely sad. There isn’t a single word for all that emotion and it’s hard to describe, but I’ll try.
This or That
Have you undergone CAR-T cell therapy?
Survivor guilt? Or something else?
The surprising bit for some will be that I feel sad, so let me explain. Much has been written of the so-called ‘survivor guilt’, the idea that people who survive a terrible tragedy when others don’t have a sense of guilt that they got lucky, that they were spared. I’m not sure about guilt, but I do have a similar feeling. The sadness of realizing that so many others didn’t get the same results. That so many other families didn’t get to celebrate this outcome and are saddened when they see results from people like me. Perhaps they find it hard to understand why I was spared when their loved one wasn’t. Perhaps they feel bad about that feeling, and perhaps it stirs up a complex set of emotions in them also.
Remembering the others in the race
I imagine a running race, where my friends and I all set out together, and only I finished. I’m happy I did, but I also would rather be in a large excited group celebrating together, than being alone, looking back to see the others who had to pull out early. Since I was diagnosed and started my treatment, I’ve personally met more than ten people who were on the same journey as me, but who ultimately didn’t get to the finish line.
In a piece of cosmic symmetry, at precisely the same time I was meeting the doctor in Boston to receive my ‘all clear’, there was a family of a child I knew who were attending her funeral 10,000 miles away in my home country of New Zealand. Her mother had asked everyone attending to wear glitter, as her daughter would have loved. When I checked in to the hospital, I noticed that the nurse had colored dots and stones on her ID card. When I asked her why, she said it was her ‘glitter’. That little girl was watching out for me.
Making sense after cancer
The sadness I feel is acute (I’m crying as I write this), and yet at the same time, I know that I now have a responsibility – to live a good life, to be a good person, to help others where I can. Similarly, it doesn’t help to wallow in the sadness, but instead to allow it to be part of this great set of emotions which includes happiness, relief, and gratitude.
To survive cancer you need mental toughness, and that doesn’t finish on the day the doctor says the treatment was successful. It’s required every day after as well.
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