Disclaimer: This article is not intended as medical or legal advice. We are not against medicine or healthcare in general. Criticism here is directed specifically at the Canadian healthcare system and my experience within it. We still firmly believe that professional medical advice should always be prioritized above all else.
It has taken me a long time to write this—about 4 years. It's painful to go back to those memories; those who have lost a loved one can probably attest that the scars of grief can last a long time. Despite that, it does get better. Now, with a clearer (though still angry) head, I hope that sharing my story may help you or anyone else going through something similar.
1 year and 3 months. That's how long my dad spent in the healthcare system. Much of that time, I believe, was wasted—as I'll explain. And even more of that time was spent waiting. Waiting and hoping. Like many Canadians, I was proud of and trusted our healthcare system. We had a family doctor[1]. We had access. We were told that modern medicine has come far and that we should have the utmost confidence that my dad will get the best care.
But it didn't turn out that way.
At first, my dad started noticing blood in his stool. A lot of blood. He also had severe constipation. His family doctor was initially dismissive, told him it was probably just large bowel movements—nothing serious. But when he started spending half an hour to hours in the bathroom, the family doctor finally started to look into things more seriously.
She pushed for tests. We waited. A couple more weeks passed, and we got the confirmation:
It was stage 4 colon cancer.
My mom was devastated. Cancer. You always hear it as the worst thing that can happen to you. But I was hopeful. As I mentioned, I was Mr. Rational, confident that all of our systems would work. You can find a lot of reassurance online and from medical staff that things will go alright. So, we got to work.
We got a referral to an oncologist from our family doctor and had our first appointment. He was... okay. I don't remember exactly why my mom didn't connect with him, though I think it had to do with his office being especially far from our home. But the most damning thing he said was that he wouldn't come up with a treatment plan for another 2 weeks. 2 weeks!? We had already spent weeks being misdiagnosed by a family doctor and an entire month waiting for a cancer diagnosis. Now we have to wait longer still just to start treatment? His cancer was already so advanced, and we didn't want to waste any more time.
This was unbelievable. We searched online and found a doctor who could see us within a week, so we immediately switched. It turns out that one can change doctors through a combination of online research, cold calling, and doctor referrals. This new doctor had better reviews than our current one and was at a hospital closer to our home. Excellent!
Okay, we shaved off a week. We did intensive research online and made sure to ask plenty of questions to the doctor. We even had a friend who was a doctor look over my dad's medical documents and review all the questions and jargon with us[2]. Anecdotally, we found that doctors and other medical professionals took us more seriously when we spoke with more medical knowledge and the right jargon. Although it was their job to take us seriously and respectfully, regardless of our level of medical knowledge.
This preparation also led to questions about more state-of-the-art treatments like immunotherapy, likely requiring genetic testing. The doctor said he would look into it. It also made sense—after all, they had just done a biopsy on my dad to confirm the presence of cancer and had his genetic material. We didn't know why at the time, but that specific question would turn out to be crucial later on.
The next 6 months were grueling. Two lines of chemotherapy, and nothing was working. The doctor never really seemed to know any answers. Why was nothing working? “I don't know”. The cancer seems to be spreading quite aggressively. Why? “I don't know”. This isn’t to say that doctors don’t have a right to not know, but it was heavier every time he kept coming in with treatments that didn’t work each time. It felt like there was no map, no clarity, and the driver kept shrugging.
As time passed, we started to notice a frustrating trend. Our meetings with the doctor began to feel like he was reading from an instruction manual. Paraphrasing, it was like: "If this happens, keep doing this treatment; if that happens, reduce treatment." Most of the time, my dad and I could predict what the doctor was going to say just by reading his tumor size reports. We started regretting our choice of doctor. Each meeting felt more like flipping through a booklet than actually getting personalized care[3].
Of course, doctors follow guidelines, but this approach sets the tone for a lack of personal care. It felt like he wasn’t considering my dad’s specific symptoms, and that led to bigger problems down the road.
All we knew was that the doctor didn't seem to know why the treatments weren't working. He recommended a common third-line chemotherapy, and we were getting fed up. We did more research and asked him again if he knew his genetic profile. To our shock, it turns out he never requested it. Just forgot, or didn't want to. I still don't know to this day.
He asked us if he wanted us to pay for it ourselves. What the fuck is going on? We asked for this six months ago, and now he's asking for payment? Of course, we agreed to pay. Until then, however, the doctor insisted we take this third-line chemotherapy. He said it had minimal side effects and was a go-to third-line chemotherapy. We relented, may as well get something done right?
It eviscerated him. Previous treatments did give him the typical side effects we were warned about, but this time was different. For one, he started getting major fevers. Despite the doctor not telling us that such high fevers were a possible side effect, he brushed it off. He just told him to take extra doses of Tylenol. Despite having multiple in-person appointments, the doctor didn't examine him and just told him it was nothing to worry about.
One night, his fevers got more severe. So bad that I thought he might die. I used the little guidebook the hospital gave us on what to do. Being instructed to call, we waited 4 hours in the middle of the night until we finally got a call back from a nurse who just told us to go to the emergency room. My dad didn't want to go. He had already gone to the ER several times in the past (for other reasons I don’t have the bandwidth to get into), and he hated the experience. He felt like they were just leaving him there to be dosed with drugs, feeling "tortured". He had already seen the oncologist several times before about the fevers, and wasn't given any real advice. So he didn't see the point. He wanted to wait it out. I couldn't stop him; it was frustrating, but it was his choice.
Luckily, he didn't die. It was actually a home care worker, later on, who looked over him and pinpointed one of his symptoms: mouth sores. They looked infected. After notifying our doctor, we were prescribed medication to fix the mouth sores, and voila, the fevers went away. Weeks of suffering, and no one listened to him, and it was someone unrelated to the hospital who cared to examine him and helped fix his problems.
In addition, the genetic test finally came back. Turns out, he has a rare genetic variation, one that made his cancer complex and aggressive enough that general chemotherapy treatments likely wouldn't have had much effect. The recommendation was to seek a clinical trial. In fact, there was a clinical trial less than 300 km away. The doctor finally exclaimed, "We finally know why his cancer was so aggressive!".
Holy shit. It really felt like this guy didn't care. He recommended we seek palliative care and continue the third-line chemotherapy that he had terrible side effects with, we were just done with him. Now, as I can explain in another article, palliative care isn’t as bad as the reputation it has, but at the time, we were just done with this doctor. We wanted something curative, and we were just tired, angry, and fed up with his lack of communication and care.
We decided to go for that clinical trial, a city away. The doctor was extremely reluctant to help. He discouraged us from pursuing the clinical trial (or any others), saying that it probably won't work anyway. He even initially refused to send a letter to the clinical trial team, telling us we should handle it ourselves, even though we lacked the medical knowledge.
Again, we were done with him. After dragging him to do something, he finally relented and sent the letter.
We drove 3 hours over there, even though my dad was gaunt and could barely walk at this point. During our appointment, oh boy, I'll tell ya—this was the first time we had someone who actually made sense. He was eccentric, but honest, and didn't treat us like we were stupid. He walked us through how his treatment worked, even explaining to us how it worked on a scientific level. He told us how others went through it, and most importantly, he seemed like he really listened to my father and me.
I just appreciated how much I didn't need to "smarten up" my questions with endless research just to get a respectful response. We went home confident that things could work out, with treatment starting in 2 weeks.
When we came back, however, something was wrong. His skin started to turn yellow. His bilirubin levels were too high—bilirubin being the chemical released by the liver and added into urine—he had jaundice. Hearing this, our oncologist said his liver was failing. The cancer spread to his liver, which also meant he wasn't qualified for the clinical trial.
We begged the clinical trial doctor to just take him anyway. What's the harm in one more sample? In our province, it was against regulations. We asked if we could do something similar in the U.S. He replied, "You could probably get anything done in the US with enough money", but at this point, it may be too late.
I didn't know what to do. The clinical trial doctor, noticing my grief, told me (and I will never forget this) how his father died in front of him due to cancer, just collapsed. "I get it".
I don't know why, but for some reason, that was the most empathetic thing I ever heard from a medical professional in my life. No pretending that everything was okay, no selling, no downplaying of our feelings, no condescension. Just the truth.
What happened to him happened to me, too. My dad collapsed two weeks later. If we had shaved off even a week or two, maybe he could have gotten into the clinical trial. I'm not saying it would have cured him, but at least we could have given him everything our system offers.
Did he get the best treatment our country could offer? Did our system work to its best?
He passed as a (medically young) 56-year-old man who didn't smoke, overeat, drink, or have any other unhealthy habits. He was reasonably fit, able to walk for long periods, and could hike decently. When he passed, he became a skeleton; he lost most of the flesh on his body, and you could see much of his bones. He could barely walk, lost all his vitality, and slept most of the day. He spent most of the time drugged up, feeling tired and dysfunctional. He presented well—he was a very stoic man who never complained about the treatments. Maybe too stoic. We learned, during our time with the medical system, that sometimes, assertive advocacy was needed to get taken seriously.
He couldn't eat any of his favorite foods—strangely, this was one of the most painful things to me. To this day, I cannot stand the look of some protein shakes. He had to drink them every day because anything else tasted too sweet due to his treatment. His body had wasted away, suffering immensely from treatment, and I can't even say it was all worth it.
He had to suffer through weeks of misdiagnosis, weeks of waiting for tests and imaging, weeks of trying to see a doctor, and countless hours and days suffering and waiting in emergency rooms. We wasted hours calling nurses and doctors, and he was given months of treatment that likely wouldn't have worked. He suffered needlessly through curable symptoms that weren't given the respect or care he needed, except by a few medical professionals. He was not given testing that could have led to better, personalized care for little apparent reason. He was not able to go into a "Hail Mary" clinical trial that might have at least made a difference due to wasting all this time.
There are several other bouts of wasted time and suffering I can go into, but I think you get the point. The suffering culminated in a year and three months of wasted time in the healthcare system.
To be clear, I'm not saying the doctor or any other medical professional was necessarily wrong. I'm sure many tried their best, and I don't see what they see. I also claim to know every underlying process or inefficiency that causes severe waiting and distress to Canadians (yet). What I am asking for is respect, clarity, and attention to my father's situation and a reasonable explanation for actions. I wanted the best for him, and we weren't getting it.
I don't think I'm the only one who feels our system is broken. Despite my grief, I have recently started to make more efforts to see if I can do anything about it. I have interviewed multiple medical professionals, talked to experts in our system, and connected with others who have gone through similar tragedies as mine. What I’ve discovered is that many people may not know certain things about our system or how to navigate its myriad difficult situations.
I want to share those experiences and pieces of knowledge with people, and I want to hear your stories too. I want to build a place where we can help each other navigate this system, so that no one else has to suffer like my family did.
If you even have an iota of spirit that drives you to help out, please contact me. This platform is in development and will likely always be evolving. I don't just need stories; I need feedback on the platform, news, thoughts, and ideas on what this place can be. I likely can't do much myself, but together, maybe we can.