To Tell or Not to Tell

After a cancer diagnosis, it’s not always easy to decide first who to tell and then how much to tell them. Some want to keep it private and only tell a few select people. Others may decide to keep the information given to a bare minimum. In my case, I’d had a fairly active social life before I got sick and my absence and subsequent hospital stay were noticeable. In fact, I was texting a friend from my ER bed to pass the time. Two years earlier I had been diagnosed with bipolar disorder and I learned that I did better when I had my “tribe” of friends and family. So when I was diagnosed with cancer, I was open from the beginning about what was happening to me. When I was diagnosed, I spent a week in the hospital undergoing tests. Even if I had wanted to keep my diagnosis a secret, it would have been difficult. A week long stint in the hospital is hard to hide or explain away.

I also knew I needed friends and family to get through what was to come. Breast cancer runs in the family, so the effects of chemotherapy in general were not an unknown. Then as I got more information from my doctors in the hospital, I really understood I was in for a fight. Those around me couldn’t do it for me, but they could be there for me. They could help me feel less alone. They could pick me up when I was down. But they could only do that if they knew.

The biggest reason, at least in the beginning, that I was so open about my diagnosis was that talking about it made it real to me. A cancer diagnosis, especially at such a late stage and at such a young age, can be very surreal. I was a week from my 33rd birthday and suddenly I had both a surgeon and an oncologist talking about surgery and chemotherapy. I wasn’t yet 33 and I was about to fight for my life. That’s not supposed to happen at 32. Colon cancer isn’t supposed to happen to a 32 year old. But it was, and I couldn’t go back in time to keep it from happening. So I had to move forward and move beyond the surreal nature of the situation. Talking about it helped me make that transition.

So from the very beginning, I was open with everyone about my diagnosis and treatment. I started a CaringBridge website (here). CaringBridge also allowed me to keep friends and family updated all at once. That even included friends of my parents as well. While there were certainly friends I kept up to date personally, having a CaringBridge website made giving medical updates easier. There have also been nights in the months since that I’ll go back and read it and read the comments people have made. It reminds me both of how far I’ve come and how many people are rooting for me.

I talk about it now because I want people to know it can happen to anyone. It happened to me because I have a genetic mutation in the MLH1 gene, which is one of the genes tied to Lynch Syndrome. But it’s happening to more and more young people as time moves on. I’m sure the statistics have changed in the two years since my oncologist first mentioned them, but at the time he told me that 1 in 10 new cases of colon cancer involved a patient under the age of 50. Right now, colonoscopies are recommended for those over 50, though there are those moving for that age to be lowered. Even in the over 50 population, not enough people get a colonoscopy. I know the prep for a colonoscopy isn’t fun. I’ve had one. Yes, there are easier tests that look for colon cancer, but if it spots anything, you’ll need a colonoscopy anyway. And only a colonoscopy can remove polyps before they ever become cancerous.

I talk about it now because I want people to talk about it. Talking about poop isn’t a cool thing. It’s thought of as private, but it can save your life. Colon cancer and Lynch Syndrome left me with a permanent ileostomy bag. I poop into a bag and will for the rest of my life. But you know what? The ability to poop into a bag saved my life. It comes with its own challenges. But I’ve learned that as human beings, we can get used to anything if we approach it with an open mind. So I’m going to keep talking about it until everyone listens.

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