At first Millie McConnell was told it was irritable bowel syndrome.
Doctors said the bloating, abdominal pain, constipation and diarrhea were all common symptoms of the gastrointestinal disorder.
But as McConnell’s condition worsened, and she began losing five pounds a month despite eating, doctors realized her condition went far beyond IBS.
She had stomach cancer.
At the time of her diagnosis, doctors didn’t know much about her disease, McConnell said.
She had a juvenile and aggressive form of Stage 3B Signet Ring, and there was no standard method of treatment, making her the “guinea pig.”
She was given three months to live.
Now, 15 years later, McConnell, 59, is only getting stronger, and is considered one of the longest survivors of this form of cancer, thanks in part to an experimental surgery that gave her a new pouch for a stomach.
“Anybody that seems to get this cancer is given a notice … I had a death sentence 15 years ago,” McConnell said.
“The stats are astounding, absolutely astounding … It’s what nightmares are made of.”
Now, McConnell is doing everything in her power to educate the public on this disease, and is facilitating a brand new support group for those living with, or recovering from, stomach cancer.
“My goal for the past year and a half, two years, (has been) to bring more awareness,” McConnell said.
“What is stomach cancer? What do I look for? What do I do? If I am diagnosed, what do I ask? All those big questions.”
The support group meetings are free to attend, and outside of Vancouver, they are the only meetings of this type in B.C.
“A stomach cancer diagnosis often results in emotional stress and a myriad of questions from the person with cancer and their loved ones,” said Gail Attara, president and CEO of the GI Society.
“Our support group offers those who attend an opportunity to exchange information and share their experiences and management strategies in a supportive, laid back environment.”
According to the GI Society, stomach cancer is the second leading cause of cancer-related deaths worldwide, after lung cancer.
If caught early, it is reasonably treatable. However, in the later stages, stomach cancer has a five-year survival rate of 23 per cent, meaning that 77 per cent of patients die within five years of being diagnosed.
In Canada, it affects 2.1 per cent of male cancer patients and 1.3 per cent of female cancer patients.
One of the biggest challenges is that the symptoms of stomach cancer are often the same as other gastrointestinal disorders — a trap McConnell was caught in.
“I am an excellent example. I had irritable bowel probably for four or five years. And I was treated as irritable bowel,” McConnell said.
“But by the time they diagnosed it (as cancer), it was me losing five pounds a month … So by the time it gets to that stage, it’s too late. So the people need to be aware, IBS and stomach cancer, you have to pay attention to your health.”
McConnell’s advocacy work began close to five years ago, when she became involved with the Debbie’s Dream Foundation in the United States. Founded by Debbie Zelman, the non-profit raises awareness about stomach cancer, offers patient support, and lobbies for funding to find a cure.
McConnell has been flown to Washington DC and other parts of the United States on behalf of Debbie’s Dream, to help in their quest for more research and funding.
Seeing the success down south, McConnell knew there was more outreach she could do here in Canada. She came up with the idea for a support group while manning a Debbie’s Dream booth at Willowbrook Shopping Centre, which garnered a lot of interest from those passing by. But she struggled with getting support from the medical community, until she met Attara at a conference last year.
From there, “the doors started opening,” and McConnell facilitated her first support group in Langley last month.
“Oh my god, we had a powerful meeting last night — powerful,” she said, reflecting on the first meeting the next morning.
“All of the information that was shared last night. It was like, oh my god, it was like filling a book,” added McConnell’s sister, Sheila Ormrod.
Ormrod cared for McConnell as she was going through her cancer treatments, and McConnell says had it not been for the help of her sister, her sister’s husband, and her own husband, she would not have made it through.
As a caregiver, Ormrod had to educate herself on how to make nutritious, high-calorie foods that McConnell would be able to eat, considering she had dysfunctional stomach, no appetite and no ability to feel if she was full. These are lessons that she will pass on to other caregivers through the GI support group.
“One of the things about our group is that they’ve (caregivers) got a place to come to, because they are concerned about taking care of the person that’s going through it,” Ormrod said.
“Those people don’t have a lot of support. I had no one, other than the Surrey Memorial Hospital. My sister had me, and my husband, and her husband. But the one who did the biggest amount of work was her.”
The next support group meeting is on Thursday, Oct. 27.
For more information on the meetings, contact the GI Society by calling 604-873-4876 or emailing firstname.lastname@example.org.
To learn more about stomach cancer, visit the website www.badgut.org.