Before I got cancer, I had a very cinematic idea of what it's like to be a survivor. I watched a lot of dramas involving cancer. You can tell when it's coming up as a plot point - the soulful music, the inexplicable cough or headache or nosebleed. If it's a happy ending, there’s the afterward: growing out your hair, putting weight back on, and having a new lease on life, ideally set to a musical montage.
When I was diagnosed with Stage 3a colorectal cancer, I knew so little about what my day-to-day reality would be like on the other side of treatment because there is nothing cinematic about colorectal cancer. I can't remember ever encountering it in a movie or a TV show.
In the days leading up to my surgery - a laparoscopic low anterior resection of the rectosigmoid junction - the information I got from my surgeon and oncologist was of the short-term variety. We had a plan of attack: operate to remove the ping pong ball-sized tumor, followed by eight weeks of recovery and then chemotherapy. That would consist of oxaliplatin infusions and capecitabine pills, a regimen called CapOx.
After it was over, I knew there would be five years of biannual follow-up scans and oncologist visits, plus whatever physical recovery was needed from the ravages of the chemo. But I was told very little about the changes to my system that might linger long after that initial work was done, beyond a single sheet of dietary suggestions.
As an anxiety-prone person, I like to be prepared for what’s coming. But as much as I am an inquisitive patient – I can’t tell you the number of times doctors have sighed wearily as I got out my list of questions – there are a lot of things I simply didn’t know to ask about life after colorectal cancer. What I was told was that there would be a “new normal,” digestively, but that eventually I would carry on more or less as I had before. That it might take a little bit of time for my bowels to normalize, but I shouldn’t sweat it.
So imagine my surprise when, many months after chemotherapy ended, I was still spending a significant amount of my life in the bathroom (justify-your-New-Yorker-subscription amounts of time). One of the weirdest things to adjust to is how much you have to arrange your life around pooping – and how much you have to talk about it. If you are incredibly reticent to discuss that stuff, like I used to be, this can be a rude awakening.
But what makes it even weirder is when doctors treat you like you’re out of the ordinary. When they would ask about frequency, and I would tell them 10 to 15 times a day, they’d look at me with surprise. “That’s pretty high,” I’d hear. You think? “Take a fiber supplement,” I was told. “Stock up on Imodium.” Done and done. Nothing really changed. Every time I’d go back with the same story. Every time they were surprised.
Then, I stumbled onto a Facebook group called Living with Low Anterior Resection Syndrome, which is defined as a varying array of symptoms or issues resulting from the surgical procedure of that name. What I found out on that page was: it wasn’t just me. Who knew? Here were thousands of people attesting that this was happening to them, too. I also learned I had it comparatively easy. Though my surgeon had warned that I might wake up with an ostomy bag, either short-term or permanent, he was able to complete the surgery without it. Many low anterior resection patients spend time with an ostomy, then go through a reversal procedure that’s often followed by harrowing gastrointestinal problems. Some in my group even choose to go back to the ostomy bag, preferring that to a life of never knowing when they’ll have to sprint to the bathroom.
United in having had our lives upended in ways we hadn’t anticipated – and definitely hadn’t thought would last for years or forever - we bonded about the disconnect between our reality and the little we’d been told. Swapped bleak humor about quality time in the bathroom. Shared our frustration that so few medical professionals were willing to talk about this condition. “We don’t really like that term,” was my surgeon’s response to my asking him about low anterior resection syndrome – though he didn’t deny my symptoms aligned with it.
My fellow FB group members on their thoughts about what they wish they’d had known ahead of time.
“I'm so grateful to still be here, but I wish I'd known my life was never going to be the same again especially after the reversal,” writes Chrystina Stockdale. “I wouldn't have just waited for things to get better. I would’ve been more proactive and less self-critical.”
One member that wish to remain anonymous explained “I would have liked to have known more about LARS before I had my surgery. My surgeon kind of hinted at it a few times, saying my bowels would be kind of ‘wonky’ and that it could take up to a year for them to heal. Apparently, after coming on here, that’s not the case.”
“Where do I start?” writes Rachael Dillon. “There is almost ZERO patient education as to what to expect long-term. My surgeon, who is one of the best, said it’s only been in the past six months that medical professionals have recognized LARS and termed it. Why is this just now coming to light?”
“My surgeon and oncologist never once mentioned LARS or the lasting side effects from the chemo, radiation and surgery would have on me,” wrote Sandra Bishop Sheridan. “Definitely would have been helpful to be informed. I didn’t find this wonderful group until after my surgery.”
Jeanee Wright, founder of the page, weighed in, too. “I had to start a Facebook group to get an understanding of what, why and how to deal with LARS,” she writes, because “I took the sole advice of medical professionals on how to treat the cancer itself.”
It might not have changed anything, but I wish I had known my life would be altered in a significant way. It might have allowed me to say goodbye to my former existence, and to better prepare for what lay ahead. Of course, I also wish I had known I had such a warm and giving community of people waiting on the other side of treatment. I might have breathed a little easier, knowing I wouldn’t feel like I was alone in this.