Musings on my patient/caregiver relationship

by Staci Wills

From the day I was diagnosed until the day I rang the closing bell on chemo, I tried my best to avoid hearing the statistics, small percentages, possible side effects associated with my cancer, but I also avoided other colorectal cancer patients.  That sounds harsh, but I didn’t want to hear what could, might, or would happen to me.  I didn’t want to hear what the statistics said about Stage III rectal cancer.  I didn’t want to hear what I would experience before it happened.  I wanted to go through the battle with unbiased expectations, and work through things as they arose.

My husband Chris, on the other hand, was quickly getting a Google medical degree and becoming a Colon Club addict.  He knew better than to tell me what others were describing, but if ever asked he could quickly give me the opinion or describe the experience of five colorectal patients.  In fact, it was my husband who burst into the bathroom one day to announce that I had to perform the “tampon test.”  At that moment, I was pretty sure the stress was too much for him and he was losing his mind.  Then he explained that radiation can cause vaginal stenosis, and I needed to insert a tampon to make sure that wasn’t happening.

I understood early on that Chris and I had different needs during this battle.  I needed to keep my focus on my experience, and not overwhelm myself with the details of reality, and he needed to emotionally prepare each step of the way and familiarize himself with all the possible outcomes ahead of time.  In short, I wore earmuffs and buried my head in the sand, and he became our local authority on colorectal cancer.

It wasn’t until I finished my last round of chemo that I finally wanted to hear what other patients had been describing, and then I wanted to know everything.  I quickly found out why my husband was on The Colon Club forum so often, and I realized that other people had my same concerns. How long would the lingering side effects last?  When would I feel like myself again?  Why did I feel so awful?  Why did everything still seem to hurt?  Why did my joints ache so badly?  Why did I have so much unexplained pain in my rectum – after all, I didn’t even have a rectum anymore!  I was ready to jump back into life, but my body was only ready for baby steps, miles away from even thinking about jumping.

One year later, at the 2012 Colondar photo shoot, I met an amazing group of people all affected by colorectal cancer. For the first time I met other young women who had the same concerns and issues that I did.  I could openly discuss menopause with a 25 year old, and she “got it”  For the first time, someone understood the heartache of losing my fertility to a cancer that had nothing to do with my ovaries.  In this group I did not feel like I was an oddity – I felt normal again. For the first time, I was able to talk about anything and everything without having to provide an explanation for background and context.

The photo shoot weekend made me realize how important it was and is to have that connection with others.  While not everyone will be as lucky as I was to have the opportunity to be one of the Colondar models, it’s important that one have people with whom they can discuss the entire cancer experience.  If you don’t have that group yet, please keep looking for it – there are people who have “been there, done that” and will absolutely “get it” when you talk about things that normal young people would never even consider!