My husband has CLL. One day he was fit and healthy. The next, he was not. At age 64 he was diagnosed with CLL. As with most diagnoses, this came as a complete surprise nearly 10 years ago.
I can’t stand the phrase “caregiver.” I’m a supporter, a researcher, a cheerleader. I supply an extra set of hands and an extra set of ears when needed. I am there to listen to tough discussions. I am there to enjoy each and every good day with my husband. This is where I see my role.
Patients often don’t have the wherewithal to digest everything they are thrown when meeting with doctors. This journey is often long and arduous and difficult to navigate. I carry a steno-pad with me for doctor’s appointments. I ask copious questions (there are no bad questions, and I continue to ask until I completely understand the answer). My husband is not focused on his disease. He is focused on living every day to the fullest – playing tennis, hiking, bowling, biking, travelling. His CLL is aggressive, and he is already on a third line of treatment (venetoclax).
It is hard to project the future, his future. So, each day is precious. My role is to read what patients and doctors are saying about CLL. To join groups with information (CLL Society has been invaluable), to ask questions, to try and understand what new research is on the horizon, to find a second opinion, and to attend webinars to learn.
But, most importantly, my role is to live life with my husband as normally as possible.
Scottsdale AZ/Toronto Canada
Nancy Simpson is the former Director of Communications for pharmaceutical giant Sanofi Pasteur in Toronto. She took early retirement in 2016 so that she could spend more time with her husband. They split their time in Arizona and Toronto.
Originally published in The CLL Society Tribune Q4 2021: Caregiver Edition.