I have stage 4 kidney cancer, clear cell Renal Cell Carcinoma. I was convinced most of my life I would never be a cancer patient. I can’t really explain why, just not something I ever worried about. My life, my normal, has changed completely since my diagnosis. Right now, I can tell you that in some ways my life is better than it was, more fulfilling. I appreciate it more. I have more time with family. I have pursued interests that were on the back burner and made some great new friends. I don’t know what the future will bring, and I don’t dwell on it. In the end no one knows the future, right?
In the past three years, I think I have had many experiences common to cancer patients.
I’ve learned so much about loss. Loss of health. Loss of control. Loss of employment. Loss of contact with some family and friends. I was surprised to find not everyone I knew stuck around after my diagnosis. I don’t fully understand why some of my family and friends backed off, but I am sure they still care. Do I feel hurt sometimes? Of course. But cancer is scary, and people’s lives are busy. I will say it has made me appreciate all the more the people that did stick by my side.
I’ve learned more about deep friendships that start based on common experience. You are always a cancer patient once diagnosed. Others with cancer understand that even when you are NED and feeling great, there are always stressful moments. Many even use the term scanxiety to describe how we feel prior to routine scans to monitor cancer. Even those scans done years after diagnosis. The friendships I have made, that started from a similar diagnosis, do come with one risk. The risk of loss.
I experienced this kind of loss recently. I became friends with a woman I will call B. She and I were both stage 4 cancer patients, with different cancers. We talked online at first, then on the phone daily, building a friendship. We managed to meet in person at a ‘girl’s weekend’ setup for a small group of us in our shared cancer group. As B’s health went downhill, I suffered with her each step of the way, traveling out to be with her and her family at the end. While I miss her terribly, I do not regret a moment of the friendship. Others in our cancer group reacted in various ways, some considering whether or not to remain in the group, not wanting to go through the loss of another friend. I understand why they felt this way, and it also gave me more insight into those who didn’t stay by my side when I was diagnosed. The thought of losing people is hard, whatever the circumstances.
Patient communities and the relationships formed there make a difference. For me, they keep me connected to others and to the world. They show us we are not alone. They are there whenever you need them, late at night when you can’t sleep or while you are in a doctor’s office. I especially appreciate them at my doctor’s appointments. I am single and often go alone to appointments. I can bring the community along with me on my phone, to keep me company.
I’ve am fortunate that I live local to a place with top cancer care, Dana Farber, and my cancer has been stable the past few years. Lucky as it allows me to participate actively in on-line patient communities. I found I have a passion for being a kidney cancer patient advocate. I found sharing my experiences, and what I have learned about kidney cancer, helps others. It allows me to still feel like I contribute, have a way to make a difference, and it is something I can do as my health allows. KCCure has given me the opportunity to advocate for kidney cancer patients, representing their voice.
I have a new normal, one I never expected. Maybe you do too? Let’s make it a good one!