In 2009, my husband Chris was diagnosed with kidney cancer. What started as a suspected case of appendicitis turned out to be renal cell carcinoma. We felt blindsided, unable to make rational decisions, forced to aimlessly follow whatever the doctors told us.
What changed things for us was when we started sharing our story through our blog and connecting with other patients dealing with the same diagnosis. Those actions empowered us to advocate for ourselves.
Even though Chris ultimately died of kidney cancer five years after his diagnosis, his voice lives on. Chris believed in the power of words and in the power of connecting people together. Since our launch in 2016, hundreds of patients have shared their stories with KCCure. And our patient communities have grown exponentially, giving people a safe space to grieve, to share, to learn.
When a patient shares their story – it does more than just help individuals. Stories inform the field. Similar to a case that a doctor might present at a medical conference, stories shared with KCCure provide a fuller, richer description of what it means to live with kidney cancer. Patient stories reveal the hope that new treatment options offer. And they expose the fissures and cracks in care that still desperately need to be addressed.
Once again, for the month of March, we will be commemorating kidney cancer awareness with a new story every day. These stories serves as a reminder that kidney cancer is not one disease, but many diseases. That experiences vary significantly based on stage and subtype. That experiences vary from person to person because of their age, where they live, because of the color of their skin.
- To the providers in the field, oncologists, urologists, radiologists, pathologists – please take a moment every day to read each story. Let’s celebrate what has been achieved, but also remember how much more work needs to be done. If you’re on social media, we hope you’ll consider sharing, retweeting with the hashtags #kccure #kidneycancerawareness.
- To our kidney cancer community members, we hope this month will further empower you to make your voice heard!