I read an article in March that generously gave me the language of the Long Middle. It fitted like a glove. In a curious way, I identified with the author who is a person with Stage IV lung cancer on targeted therapy. For me, a person living with metastatic cholangiocarcinoma and a Specialist Lung Cancer Nurse caring for lung cancer and mesothelioma patients, I had never liked the term ‘survivor’ in the metastatic setting. I always felt that the term survivor set up the person to fail when their disease came tumbling back.
The Long Middle sits between a terminal cancer diagnosis and end-of-life care. It's how we live and what we do during this time where our language mostly runs dry. We have words for the crisis of diagnosis and the gravity of the end. We have far fewer for everything in between.
Precision oncology, genomics and personalised care have gifted me the privilege of my long middle. Being a lung cancer nurse managing patients in the early days of genomics gave me the privilege of insights that could be possible for me, and how I have thrived in the long middle, not just lived. I am in awe of these remarkable people and think of them as shining stars in my story. This presentation will explore what it means not simply to live in the Long Middle, but to thrive within it, and what clinicians and cancer services can do to help more people do the same.