'If I have to die, so be it': Advocating for change, Délı̨nę elder with advanced cancer heads home

When Délı̨nę elder Morris Neyelle woke up from emergency surgery to remove a pop can-sized tumour from his colon, the world seemed painted in fluorescent green.

He was in the most pain he had ever felt. After a few minutes, colours returned to normal and he could see again. He asked the doctors at Stanton Territorial Hospital in Yellowknife: 'Why did you bring me back here for? Why didn't you just let me go?'

"I think they said, 'That's not our job. Our job is to make you survive,'" Neyelle, who is 71, recalled.

Neyelle — an artist, photographer and former band councillor — returned to Délı̨nę this past week, more than a month after paying his own way to Yellowknife to see a doctor about terrible stomach pain. He found out he has stage four cancer, a type of advanced cancer that requires surgery or radiation.

With his arm around his wife, Bernice, Neyelle told CBC News so far he's opted not to go down to Edmonton for radiation treatments. 

"If I have to die, so be it, because I don't want to go through all this unless something comes up that tells me I should go, because I have my own beliefs with my elders and culture as well," he said.

He added he'd rather stay in the N.W.T., where he has supports.

"Through the month we've been [at Stanton], and even way back, I learned how to accept death, how to cope," he said.

"I don't want to be afraid. Why should you be afraid? It's always around us. We need to learn that ahead of time, because if you don't, you suffer great. I learned that from my parents."

Cancer akin to a 'death sentence' in some communities

Neyelle has used his situation to draw awareness to the lack of health services in smaller N.W.T. communities. Bloodwork and stool tests done at the health centre in Délı̨nę had come back without detecting his cancer, and there were no specialists there to diagnose his pain.

The pain in his stomach had been getting worse, and grew unbearable after he spent a week scraping hides to make traditional drums.

He said at that point, his doctor told him the only way he could get a full check-up was to go to Inuvik or Yellowknife.

"I know I always complained about my stomach, but it's never been really looked at until the very last second. And now I'm on stage four," he said. 

"I figured I need to do something, and this is one of the things — I want to make people realize what's wrong, what's happened with the government. They need to push for more facilities for early detection of cancer."

Neyelle wonders whether his cancer is connected to his experiences mining silver at the Port Radium mine in 1978. The mine opened in 1929 and operated for decades, first as a uranium mine and then as a silver mine, employing many people from Délı̨nę.

He pointed to a federal report from 2005 about the Port Radium mine site, which had 26 recommendations on what should be done about the mine's legacy, looking at environmental, health and community impacts. Some of those recommendations called for more resources at Délı̨nę's health centre.

Danny Gaudet, Neyelle's son-in-law, was involved in creating that report. He said the health system in smaller communities needs to shift toward offering preventative health care instead of reactive care. He said right now the health centre in Délı̨nę isn't equipped to provide specialist care, and focused on managing Neyelle's pain instead of getting to the root cause.

"Why are we always dealing with it after the fact, and it's probably too far gone already?" he said. 

"Anybody who gets cancer, it's almost an automatic death sentence just because of the way the system's set up."

Gaudet said the recommendations from that 2005 report have been neglected over the years and should be revisited by the territorial government.

Territorial response

After Neyelle decided to pay for a flight to Yellowknife, it didn't take long for the doctor at Stanton to get him in for emergency surgery. He said the doctor told him he wouldn't have lasted another weekend if he hadn't flown out.

CBC had previously given the N.W.T. Health and Social Services Authority a consent form from Neyelle waiving his privacy rights to discuss his case. At that time, spokesperson David Maguire said they will not comment about his case but would speak to Neyelle directly. 

Neyelle said on Monday he has not received any follow-up yet, though he and his wife said they expect they'll get reimbursed for the cost of their flight.

Maguire said in an email medevacs are available based on the condition and stability of patients, and patients need to be accepted by a physician at the facility they're going to in order to have one.

He wrote there is no appeal process for medevac flights, though they have a quality review process that looks at individual complaints.

Maguire also laid out what cancer detection services are available in smaller communities: pap tests, for instance, are done at all clinics in the territory; breast cancer screening is available in Hay River, Inuvik and Yellowknife.

All community heath centres offer tests for stool samples to detect colorectal cancer, though those tests didn't work in Neyelle's case.

In January 2020, the health authority launched an organized screening program for colorectal cancer, proactively mailing stool sample kits directly to the mailboxes of eligible people in the Beaufort Delta, Sahtu, Hay River and most recently Dehcho regions. Maguire said there are plans to continue to expand to the remaining regions in the coming year.

Patients within the N.W.T. can submit their concerns and complaints on medical and hospital experiences through Health and Social Services.