Going through chemotherapy treatment was extremely difficult, and eventually I learned that sometimes, it’s OK to not be OK.
In my cancer journey, one of the best statements I have ever heard was “It’s OKto not be OK. Just don’t live there very long.”
When I was in treatment for my stage 3b colorectal cancer, I would lay around most of the time feeling guilty because I was so sick from the side effects of chemotherapy. I would hide in my room because I felt disgusted and just did not want people to see the shape I was in at the time. It was like all those stories I would read as a child about the troll who lived under the bridge or the ogre in the cave. I felt that I quickly became something frightening, cruel and difficult to deal with at times to my family and friends.
If it wasn’t for my dog,Wren, I probably would not have left the house at all during those dark days of chemotherapy treatments. It was that kind of emotional turmoil that prevented me from seeking support in the beginning of my cancer journey.
Cancer is not pretty, and it's not meant to be, no matter how much the media may glamorize it. Always being positive and staying strong isn’t the reality of a cancer patient no matter how much people try to convince us we should be at times. When you are in treatment you just feel sick and tired of being sick and tired. People tell you that you are an inspiration for what you are going through with your cancer treatments but in the back of your mind you know they are just hoping it never happens to them. I say that because I did the same thing before I was diagnosed with my own cancer.
My wife has been a nurse at our local hospital for over 30 years. Early in our marriage and before we had kids, I would go visit her for lunch. I would walk on to the hospital campus and often watch people, hoping I would never find myself in that situation. I would smile as I walked by and offer assistance when I could, at times thinking I would want someone to do that for me.
I remember telling them “God bless” or “stay strong,” if only to just appease myself but not really to encourage them. I even had a scare with testicular cancer in my mid-20s and feared I would be the one getting so sick because of all the images I had seen of what men go through with this type of cancer. I remember that if I even mention to my male friends the possibility that I might have cancer they would cringe, and the conversation shifted quickly to another topic. Even though at the time, I really needed to talk to someone about the fear I felt of being diagnosed with cancer at the time.
I think a lot of times as a cancer survivor we live in the “seen-and-not-heard’ mentality. People see us or know we are a cancer patient; they just don’t want to hear about the struggles and pain we are going through. We are typically ghosted on social media for that reason.
I’ll admit I did the same thing before I was diagnosed with cancer myself. It’s just the fear of the unknown and it’s something we understand even more with worry of recurrence with cancer.
I think the first time I heard the saying,“It’s OK to not be OK.Just don't live there very long,” I think it gave me the ability to face my own sorrow in my cancer. There were times during chemotherapy treatments that I would spend most of the day in tears.
My therapist would encourage me to get up and go for walks, take a shower, play with my dogs and go outside to sit in the sun. I guess that's where the“not living there very long” comes into play. I would even do crazy stuff like put a bag of frozen peas on my head to change my body temperature. Honestly the last thing I wanted to do was to talk to someone about my cancer.
I would finally open up to my therapist to not burden my wife because it was becoming hard for her to be my only sounding board. I would eventually join a cancer support group at my cancer center, seek support through a couple of online and Facebook cancer support groups. I slowly started to understand as a cancer survivor there are days when I just am not going to be OK but I can choose to not live there very long.
I did start to open up to more people about my cancer, but it was all just a process. Today I lead a men’s cancer group on Facebook called The Howling Place group created by my friend Trevor Maxwell as a part of manuptocancer.com webpage. We encourage men to share what they are going through in a private space that is for men only. We have grown to about 2,000 members since we started it in early 2020. It given me purpose in my survivorship and a way to offer support that was hard for me to find in treatment.
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