Round the Twist: Facing the Abdominable shares your story about fighting for your life against Stage-4C Colon Cancer and the hurdles you faced from people in the healthcare field and your personal life. Why was this an important book for you to write?
First, it seemed as if there was a recent wave of younger cancer patients (under 50) being diagnosed, and as soon as I got my diagnosis and tried to research what was going on, I discovered that most of the information (including memoirs and biographies) mostly dealt with 50+ patients. Colon cancer historically affects older adults (in their early 70s), so much of the information didn’t apply to me. I actually didn’t set out to write a book at first, I was just blogging about my experience, but then another writer suggested I turn it into a book—I might reach a larger audience of younger cancer patients who needed to hear my story so they could have someone to relate to.
Second, my issues with the healthcare field at the beginning are not uncommon. Since publication last fall, I’ve been contacted by many younger women, so I’ve heard too many stories from these women with colon cancer that they, too, had difficulty getting a proper diagnosis. I was very lucky that my gynecologist and primary physician were on top of my symptoms and tried their best to get me into the proper hands. Unfortunately, the first oncologists I met with were not as invested in my well-being. I think this is pretty common. I wanted other patients (women in particular) to know that they don’t have to accept the word of a doctor they don’t fully trust. It’s ok to walk away and start over again with a new doctor. Your life could depend on it, but we live in a society where we often feel we need to please people, and that doctors are somehow gods among men. This isn’t true! We, the patients, need to find our voices and speak up. It’s ok. No one is going to be insulted, but you will get better care.
What were some ideas that were important for you to share in this book?
I wanted mostly for people to understand that the experience of cancer is many-layered. We’re not just sad that we have cancer, or sick because we have chemo, or happy when we get a clear scan. There are so many facets to our new reality that it can be hard for people even to talk to their spouses about it. I’m lucky in that my husband and I are so open and honest in our communication that I could tell him exactly what I was feeling and know that he would try his best to understand. Not everyone has that (that doesn’t mean they’re not in a loving relationship, it’s just that sometimes talking about hard things can be, well, hard) and I felt that if I could lay myself out there open and honest to the world, then someone might point to a chapter and say, “If you read this chapter, you’ll understand how I feel right now.”
I also wanted to point out how difficult it is to go through something as private as cancer in a world with social media. I made the conscious decision to go through my treatments in the public eye—again because I thought it would ultimately help someone else who was feeling alone. They could point to my blog or a post or a photo. I could be their voice so they didn’t have to share.
What was most important, though, was to impress upon people that no matter how scary or dark the prognosis may be, there is a beautiful world going on all around us. It is a gift to sit in the grass, to pet the dogs, to eat a good meal, to hold your children in your arms, or be held by your lover. There is always hope. If you surround yourself with people who also believe in that hope, magical things can happen. I don’t mean friendship cures cancer! But it sure helps keep your mental state positive so that you can focus on getting better knowing you’re loved.
What is a common misconception you feel people have about how to support family and friends who receive a diagnosis of cancer, and what is one thing they can do that actually helps?
The first thing some people said to me was, “Let me know what I can do to help.” Cancer is so overwhelming, we often can’t think of much more than what we’re doing right at that moment. My husband was the one who decided what I would eat for meals because trying to decide for myself was too much. There was no way I could anticipate my own needs. So although the offer sounds great, it really is overwhelming—and I never ever told people what they could do to help because I didn’t know what I needed.
What was actually helpful were those who said, “I’m coming over to do your laundry,” and “Look on your front porch, I left some food.” There were countless mornings where people left bags of food on our porch. Offering something specific, like “Can I run to the grocery store for you?” is way more helpful. People stepped up and said things like, “Don’t worry about getting to your next radiation treatment, I’ll be there at 12:30 to pick you up.” My friends who did not take “no” for an answer were the most helpful of all!
And the one thing people can always do is check in often. Simple messages to say “I’m thinking of you,” have a huge effect. Especially when I was feeling down, and someone would text, “Just wanted to let you know I love you,” I would pop out of my dark cloud. There’s never a wrong moment to check on your friend.
What do you hope is one thing readers take away from your story?
I hope that they understand that my outcome was unique, I still haven’t met the 5-year survival statistic, and that I count my lucky stars every day that I’m still here. I’ve already lost two friends to colon cancer (who were also under 50) so I know how quickly these situations go wrong. Hold on to hope, but also hold on to facts, and face reality. Life is a gift, every single day, live to the fullest and never miss an opportunity to tell someone you love them.
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