I was diagnosed with Stage IIB/IVA Hodgkin Lymphoma in September 2014 at 28 years old. Just three weeks earlier I had proposed to my wife Allison. We were new lawyers, starting out life in a new city, looking forward to our future together. It’s fair to say life was at an all-time high. But then cancer intervened. Instead of planning our wedding, we were scrambling to find an oncologist, learn about treatment options and side effects, deal with fertility issues, and break the news to our family and friends that I was sick. It was a steep learning curve transitioning from young professionals with a bright future, to being a young cancer patient and caregiver. A lot of life happened in a very short amount of time. The stakes were high: we had to make a lot of sad, tough decisions very quickly because my life depended on it. The good news is that I've been on the long road to recovery.
But I have learned an unfortunate truth: nearly every newly-diagnosed cancer patient and their families have to start from scratch like we did. Over the last two and a half years, we’ve met a lot of cancer patients and their families, all of whom tell a similar story of grappling with chaos. It’s INSANE. But it makes sense. Who expects to get diagnosed with cancer? Almost no one, and certainly not young people.
Here's why that happens.
Fantastic resources exist, but newly-diagnosed patients don’t know what to look for or where to look. It’s so hard to do research when you're an emotional wreck and the clock is ticking. Finding an oncologist is totally overwhelming. You need to choose from a group of strangers to decide who will be responsible for your survival. Where do you start? Maybe you're lucky and know someone who has had the same disease and can make a referral. But what if that doctor isn't for you? What if you don't click? Where do you turn?
I remember frantically googling my disease on the day I was diagnosed: YIKES! There were so many "magical cure" and "chemo is worse than cancer" articles. And when I came across reputable cancer organizations' websites, my heart was beating so fast that it was hard to read, let alone click through the massive menu until I found info that looked like it might be helpful. I had no idea what to look for anyway. It wasn't until I spoke with a friend of a friend who was a Hodkgin's survivor that I even began to have a clue about what to do. She calmed me down, explained what staging was and what PET/CT scans were, and helped me get a plan in place for finding the right doctor. That conversation was invaluable, but in the midst of the madness, we never spoke again.
There are still so many resources I wished I knew about when I was first diagnosed that would have made my life easier. For example, I didn’t know about Imerman Angels, an organization that matches patients with mentors who are survivors of the same disease, until eighteen months into my treatment. It would have been game-changing to have a dedicated mentor who had already been through treatment before I started chemo. Or, did you know that the American Cancer Society has a program where volunteers can give you a ride to treatment? I sure didn't and I found out about it with only one more infusion to go.
Since my diagnosis I've tried to pay it forward by talking to newly diagnosed-patients. And I am not alone; the cancer community is full of people looking to help others, to ease the burden of the disease. But we aren't available 24/7, which is why my wife and I created CSource.
We wanted to capture these intimate and important conversations between patients and help organize the information and resources that would have helped me so much when I was first diagnosed. Our first product - the CSource chatbot - is a straightforward text conversation from one patient to another. It's like talking to a knowledgeable friend who points you in the right direction.
But this product is only a skeleton, and we want to work with you to put meat on the bones. We hope to make CSource the trusted aggregator for navigating cancer care. Together we will identify the amazing resources, information, and services available - from one patient to another.
We also would like to say a massive thanks to Chatfuel and Master of Code Global!