Erinn Monture, who is Mohawk of the Six Nations of the Grand River Territory, is founder of the Ewadadadrihwanokwa:k Indigenous Cancer and Awareness Centre in Ohsweken, Ont.
In March, 2015, I was coming home to Ohsweken, Ont., from working in Ottawa, and my stomach was really big. I thought, “This is not normal.” So I went to the doctors and I kept telling them I’m sick. It took them nine months to actually diagnose me.
Twice a week, I’d take my briefcase to the hospital, check in and demand to be seen. They’d tell me, “Oh, you’re fine,” or “you just have an infection.” Whatever. Honestly, these were not the answers.
Ovarian cancer is one of the least acknowledged cancers to begin with. There could be a hundred different reasons why your stomach is swelling up or you have pain. So it’s really hard to diagnose. Very few people get diagnosed with ovarian cancer at the early stages. It’s a silent killer.
So the doctors looked at other issues. My gynecologist actually said, “Just face the fact: you’re getting older. You’re getting fat.”
I don’t know why I suspected I had cancer, but I couldn’t figure out why else I was the way I was. Something just told me I was sick. I just knew.
Eventually, they did a CT – a computed tomography scan – on me, and they found the first tumour. When they did, I jumped up and down because someone actually listened to me. I found it!
I went back to my gynecologist and asked for a biopsy and I packed my bags and waited.
Six weeks went by. In that six weeks, I ended up getting another CT, and found I had another seven tumours. That day, I was in the hospital waiting for someone to explain what was going on. My gynecologist saw me and said, “There’s nothing wrong with you. Go home.”
I stayed at the hospital anyway, and found out I had these other tumours. I waited for my gynecologist to call me the next day. He did not, so I took myself to the hospital and said, “Can you help me? Here’s my paperwork. I have all these tumours. Can you help?”
Within 24 hours, they figured out I had ovarian cancer.
On Dec. 5, I was supposed to have surgery. My daughter had flown in from Chicago. My mom was there. Two hours past my scheduled surgery time, I said, “I bet I’m not going to have surgery.”
And sure enough, the doctor comes out and says, “What do you think you have?”
I said, “On paper, it says ovarian.”
He replied that the results of the blood test used as a biomarker for ovarian cancer were not that high. He kicked me out and sent me home because they don’t work overtime.
I screamed up and down that hospital for a week, and finally, I got surgery. Tumours were removed all the way up to my heart. I was covered in cancer. The doctor actually said to my mom, “It’s a good thing she has a big mouth.”
Right then and there, I knew I had to become a voice for others. I know a lot of Indigenous people are very quiet, and they listen to what their doctor says. When they leave their territory, they’re not secure in their surroundings. I had to show it’s okay to stand up and fight for yourself.
Indigenous patients are diagnosed with cancer at later stages [than the general population], because you’ve got the residential school issue, you’ve got the Sixties Scoop, you’ve got the fact that we don’t have a lot of doctors on reserve, so people don’t trust what happens outside of the reserve.
And then you have the communities up north, including fly-in communities, that don’t have access to steady medical services to begin with. And then people have to leave the places where they feel secure to fly to a hospital that is many, many miles away. And maybe they don’t speak the same language. There’s a lot of cultural barriers that need to be addressed when it comes to Indigenous health.
Even my friends, who have passed away, would take that first answer. Or they’d have an infection and they’d be swelling up with lymphedema, or whatever. I’d say,"‘Go back to the doctor."
“No, the doctor said to wait. It’s okay.”
So then I would advocate for them. I took that on as a full-time job. It’s teaching patients to have that voice for themselves, and letting them know they can question. If you know you’re not well, then you stand up for yourself. Doctors may get mad because you’re irritating them, but if you can save your own life, then why wouldn’t you?
At the Indigenous cancer resource centre I founded, we have hospital beds, we have prostheses, we have head scarves, we have wigs, we have books. We have all those things to lend or give to people and help.
I just turned 50 in August. A year ago, did I think I would make my 50th? Six months ago, did I? Yet here I am. I actually made it.
You can only go on chemotherapy for so long before your body rejects it. That’s where my body’s at right now. I’m called “platinum-sensitive.” So I can go on chemo, but it’s only going to keep it at bay for so long. You have options: Do you stay on chemo and then it doesn’t work after a while? Do you not go on chemo and live with it? Do you hope a trial comes along? There are all these what ifs, but the bottom line is how long do I have? How long until the tumours come back? How long till it spreads? How long?
So every day, you go out do what you can, you advocate, you do your work and live your life to the fullest.
– As told to Wency Leung
Wency Leung