Ben Bravery was undergoing bowel cancer in his late 20s when he realised his aftercare left a lot to be desired.
His solution? To go to medical school, become a doctor and try to bring about change from within the industry.
He's now written a book, The Patient Doctor, to try to help both patients and doctors understand one another and improve the relationship.
Dr Ben Bravery Photo: Supplied
The Australian was mostly able to “explain away” his symptoms, like diarrhea, constipation, and bleeding, until he decided to discuss it with his father who came to visit him in China, where he worked as a zoologist.
“He comes over to China regularly to see me. We go snowboarding … I fall over way more than I spend gliding down the slopes, and I think all that activity really upset the tumor.
“So, I had a massive bleed one night after snowboarding and I decided I had to tell him.
“He was reasonably worried, and that was reassuring that I wasn't kind of imagining things and that I needed to act. He kind of prompted me on so then I disclosed to mum.
“So, she quickly said you need a colonoscopy, Benjamin, and when you come back next week for your visa, I'm going to book you in.”
Dr Bravery tells Kathryn Ryan that was a life-changing point, because his mother’s intuition was right.
“It’s really important to know here I was 28. I was really fit. I'd never broken a bone and I had no family history [of cancer], so this wasn't on my radar.”
After the diagnosis, his first surgeon was so optimistic that he and his mother “almost danced coming out of that consultation”, he says.
But their neighbour, who was a nurse, had by chance heard their conversation and suggested he seek a second opinion at a cancer hospital they had worked at.
“It wasn't raised by anybody that I might want to consider multiple opinions. Now myself as a doctor, I encourage all of my patients to get a second opinion even when one of those opinions is mine.
“It ended up being dramatically life altering again … they took me through a much more detailed process before they even committed to a treatment plan and what they found … is that the tumor was a bit more complicated.
“It was touching a whole bunch of other organs. It was more advanced than the CT scan or the colonoscopy had shown.”
Despite this specialist hospital having more expertise, it was a difficult choice to make on which doctor to follow, Dr Bravery says.
“You really do gravitate to the connection, to the facial expressions, to how your questions were answered, to a warm smile, because we're all people, right? And that's the thing we're looking for, and we often make decisions that way.
“The second surgeon was very technical, very precise, was clearly senior, had done hundreds and hundreds, maybe thousands of these surgeries. But wasn't connecting with me on that level. I didn't feel hopeful, I didn't feel listened to.
“In fact, when I informed him that he was the second opinion, he got a bit defensive and actually accused my mum and I of shopping around for a second opinion, which is a nasty term, isn't it?
“So, I almost didn't go with that surgeon because of that. But I did in the end, because I wanted the hospital, I wanted all those thousands of clinicians working in cancer.”
But his recovery didn’t go as expected, some of the stitching had busted open, his bowels were spewing out litres of green fluid, and he lost 12 kilos while unable to put food even near his lips, he says.
“So I'm getting more unwell, I'm in a lot of pain, no one knows what's going on, I'm next to this man every night that's pleading to die, and [in] this one particular ward round, someone I don't know, as a part of this big group standing over me, threatens me with this [nasogastric] tube.
“I just felt like the system had won. Here I was at my absolute lowest, hurting on the inside and the outside, and being blamed for getting worse.
“That was the lowest point in my care, and it's a point I want to make now as a doctor is that our routine is not routine for the patient in front of you. Our normal is their abnormal.
“That was just a regular ward round for that person, that was just numbers on a page they were trying to fix but that was my whole world and it was a complex world and because nobody had asked me how I was coping or how the experiences I was watching around me were affecting me, they had no idea how low I was actually getting.”
Dr Bravery believes there are empathetic medical students and doctors out there, but the system is letting them down, so they quickly become cynical, burnt out, and frustrated.
“I think all the individuals are entering the system in good faith, both patients and clinicians, but the system is doing its best to upset that dynamic, to really frustrate both sides of the doctor patient relationship.
“The fix is big. I don't pretend to have all the answers.
“What I'm trying to do with my experience as someone that was sick and became a doctor and still really see myself as a patient, carrying a stethoscope or a patient interacting with other patients, is to help both sides understand each other.
“There's a big divide at the moment. Both sides are frustrated. Both sides are unhappy with the care they're getting, in the care they’re providing, but if we understand each other's viewpoint, we can align and we can leverage the system to change.”
He says he is encouraged by the strong appetite for change and to deliver health care with more heart.
