Blind Enthusiasm. The Blog.

“You have a large tumour in your rectum.”, he said. Two thoughts ran through my head. “I knew it.” and “Why is he smiling?”.

I Knew It (Part One)

I remember with perfect clarity the moment I started feeling ill. It was February of 2014 and we had gotten up at an un-godly hour of the morning to watch the Olympic gold medal hockey game. When the game was over and Canada had declared victory, the sun wasn’t even up yet and I didn’t feel well. You know that achy, exhausted feeling of the flu? The kind where your bones are on fire? That’s what I felt. I mentally shrugged it off and went to take a nap. 4 months later, the ache and fatigue was still there. I was constantly unwell, experiencing strange neurological symptoms, I could barely make it through the day without needing to lie down and I’d lost over 20 pounds. By April of 2014 I’d been to the doctor dozens of times. I’d been poked, prodded, placated and patronized. Every test was negative.

Then one day I started bleeding. I started bleeding from a hole you’re not supposed to bleed from.

Tip #1

The human body has one hole that is designed to bleed regularly and only 50% of us have that hole. If you start bleeding significantly from any other hole on your body, for the love of God, see a doctor. I know this seems like common sense, but you’d be surprised how many people don’t. If you were bleeding from your eye you’d likely rush yourself to the emergency room faster than, I don’t know, a person who is bleeding from their eye, but suddenly our nether-regions become involved and we don’t want anyone to know. I know because this is how it was for me, but holy shit, if you start bleeding from your rectum you need to get over the embarrassment and tell a medical professional. It might just save your life.

I went to see my doctor and thanks to my good Catholic upbringing, I could barely get the words out of my mouth. Blushing with awkwardness, I tried to emphasize that this was not a “spotting problem”, it was a “heavy flow problem”. His response was to say that “it’s probably just hemorrhoids” and to shoo me out of his office while patting me on the head like a small child.

*Note* He never actually physically patted me on the head but by all emotional measures, he may as well have.

I am so grateful my husband was there with me that day.

Tip #2

Take someone with you to your medical appointments. You need another human being there to help you remember all the stuff they tell you and to help you remember all the stuff you wanted to ask about. More importantly, you need someone there who will help you stand your ground when you know something is wrong but you’re not being taken seriously. I’m not saying all doctors are patronizing, eye-rolling, know-it-alls but they spend all day talking to people who are complaining about all sorts of things and a lot of the time it turns out to be nothing. They are human beings who get tired and complacent, they make assumptions and judgements, and they make mistakes. THEY’RE HUMAN and that’s ok but if you go in bleeding from your ass and don’t speak up for yourself when you feel like they’re not listening, then you’d better have someone in that room who will.

When we finally did ask for a colonoscopy my doctor said he didn’t think it was necessary. Let me repeat that in bold letters. I went to my doctor because I was bleeding from my rectum and he said he didn’t think that warranted further investigation.

Tip #3

Trust your intuition. Since my own diagnosis and treatment, I have read several memoirs written by women who have survived cancer.* In each of these stories, including my own, there is a theme that plays out time and time again – we are told that we are tired, stressed, depressed; we are told that we are not sick; we are told that the issues are all in our heads. Our symptoms are dismissed and we face long, frustrating battles with our care providers in order to get the testing needed for a diagnosis. I was continually told to “drink more water”, “reduce stress”, “get more sleep” and my personal favourite, “try exercising more”. If you know me at ALL, that last one is laughable.

In addition to this my mental health was repeatedly questioned. The more aggravated I became at my doctor’s inability to listen and the more I expressed strong emotions towards him, the more he dug into the notion that I did not have a physical problem. The tears streaming down my face during my appointments were the tell tale sign of clinical depression and my heightened emotional state was proof that I just needed rest. The worst part was, I started to believe him. I questioned my own sanity, my own intuition and the things my body was telling me. The darkest days of cancer for me were not the surgeries or the months of chemo and radiation. The darkest days were the months leading up to my diagnosis where I knew something was wrong but I felt like no one would listen. I was like a wounded animal, cowering and snarling, backed into a corner. I didn’t trust anyone. Not even myself.

The darkest days of cancer for me were not the surgeries or the months of chemo and radiation. The darkest days were the months leading up to my diagnosis where I knew something was wrong but I felt like no one would listen.

By the time my diagnosis came along I was stage 3, which means that it had spread into the lymph nodes around my colon. I was 34 years old. Had I given up on what my body was telling me, the cancer would have metastasized and by the time they found it, it could have been too late. I cannot stress enough how important it is that you listen to your body. If it helps, buy this sign, hang it in your house and read it every damn day.

Fast Forward

The details from the moment where we finally convinced my doctor to refer me for a colonoscopy to the moment where I awoke from my twilight sedation are muddled. It’s hard to remember what happened in those weeks. The memories exist as feelings rather than particulars. I was still sick, exhausted, angry, and absolutely terrified. What I do remember is that it didn’t take long for me to be scheduled for the exam. The referral was made in April and less than a month later, I met the doctor who would eventually tell me that I had a large tumour in my rectum.

Why is he smiling?

My gastroenterologist is a tall, thin man in his mid-thirties with a very gentle demeanour. When we first met, he gave me grief about my low weight but he did so with a kind voice and a curious grin on his face. This grin, I would come to learn, is his most distinguishing feature. I don’t think he is conscious of the fact that he is smiling when he speaks. It’s as if his mouth can’t help but spread outward and upward to reveal two rows of perfectly white, straight teeth. It’s like his lips require the action to speak words. This, combined with his docile nature, soft voice and slightly oversized ears, makes him easy to be around and to talk to.

We chatted about my symptoms – weight loss, nausea, bleeding, joint & muscle pain, stomach pain, diarrhea, fatigue and unbelievable weakness. He listened carefully, asked questions and explained the possible diagnoses responsible. He outlined the procedure, what he expected (hoped?) to find, and what the worst case scenario would be. For the first time since I had gotten sick I felt confident that I had finally found a specialist who was on my side. I remember thinking, “This man should teach bedside manner in medical school.”

On the day of my colonoscopy he was no different. His kind demeanour and ever present grin soothed my fears of having a large tube inserted into my rectum and pushed through the span of my colon. It’s a strange thing to say on an occasion such as this, but I felt at ease with him. If you’ve ever had a colonoscopy, you know the procedure itself isn’t really a big deal. You’re basically asleep and wake with very little memory of the whole affair. Afterwards, you’re wheeled into a room with half a dozen other partially sedated patients, all of whom have air in their colons that they need to pass before they can go home.** Following the scope, my gastroenterologist asked to have my husband join us in the “farting room”, where he closed the curtain, clasped his hands and began to speak. It is an unusual thing to deliver awful news to a patient with a smile on your face.

“You have a large tumour in your rectum and it is bleeding” he said gently through his boyish grin. “It is likely cancer” he finished. Although I was accustomed to his manner, I could not stop myself from wondering, “Why is he smiling? This is the worst possible news I could receive and this guy is fucking smiling??” The thought was fleeting.

I Knew It – Part Two

No one else’s loved ones were brought into the back room. No one else had the curtain pulled to share their test results. The doctor hadn’t even delivered the results to the other patients. A nurse had come and given them a report signed by the attending specialist. She asked if they had any questions, gave them follow up information and sent them on their way. I watched half a dozen other people leave in this way. When my doctor appeared and asked the nurse to get my husband, I knew I was not about to be given the all clear and sent home to eat the best tasting dry toast known to humankind.

As he continued to smile and explain the next steps, I couldn’t help but reflect on how much I appreciated his manner. It was reassuring and his delivery really did add whatever levity it is possible to add to a situation like that. I often look back on the moment and laugh to myself. Imagine that, being able to smile and chuckle about the moment you were told that you had cancer. Reflecting on it now I wonder if maybe he knows exactly what he’s doing with that grin.

Faster And More Forward

It has been 8 years since that day. I spent a year in treatment, including chemotherapy, radiation, a surgery to remove my rectum, more chemo, 8 months with an ostomy bag, and a second surgery to put my guts back together. Every year since 2014 I have had a colonoscopy and with the exception of a few polyps, the results have been normal. At this moment, I am cancer free. I still see my gastroenterologist regularly and I look forward to catching a glimpse of his smile every year. I turfed that first family doctor and found a new one that I trust. I am no longer shy about my body and it’s functions. I am learning to speak up and advocate for myself but I still struggle so I make sure I have my husband with me at the important appointments.

I spent a year in treatment, including chemotherapy, radiation, a surgery to remove my rectum, more chemo, 8 months with an ostomy bag, and a second surgery to put my guts back together.

Tip #4

Know the risk factors for and get screened. March is Colorectal Cancer Awareness Month. According to the Canadian Cancer Society “Colorectal cancer is the second leading cause of death from cancer in men and the third leading cause of death from cancer in women in Canada.” It is estimated that about 1 in 14 Canadian men and 1 in 18 Canadian women will develop colorectal cancer during their lifetime. Translation – a colorectal cancer diagnosis is not a particularly rare thing. There are many risk factors that pre-dispose a person to having colorectal cancer such as family history, age and the presence of certain genetic conditions. Other risk factors include smoking, alcohol use, a diet high in red meat, inflammatory bowel disease and type 2 diabetes. This is not about pointing fingers or assigning blame because you like steak and wine or struggle with your blood sugar levels. My last tip is simply about knowing what the risk factors are, being aware as to whether or not they apply to you and developing an open dialogue with your trusted medical professional in regards to early screening.

Will those conversations be uncomfortable? Yup.

Will you have to talk about poop and butt holes all while trying to stifle your own personal mortification? Absolutely.

Will they look at the areas of your body you would rather they didn’t? Probably.

Is all of this worth the peace of mind knowing you have healthy guts or maybe you don’t but they caught it early and you have a better chance of living a long and healthy life? You bet your ass it is!

Resources

For more information about Colorectal Cancer risk factors and screening visit www.cancer.ca or www.colorectalcancercanada.com

*Two incredible stories written by women about their cancer journeys that I cannot say enough good things about are “Between Two Kingdoms” by Suleika Jaouad and “Everything Happens for a Reason: And Other Lies I’ve Loved by Kate Bowler.

**For hilarious stories, including one about the embarrassment of colonoscopies and the “farting room” I highly recommend “Let’s Explore Diabetes With Owls” by David Sedaris.