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Odds are you know someone with cancer. Someone in treatment. A survivor or someone who died from it. Since statistics say one out of two Canadians are expected to be diagnosed with cancer in their lifetime, most Nova Scotians are touched by the disease. We’re sharing personal interviews of three people who are dealing with cancer at different stages of life: last week was a senior, today an adult and next week a child. Finally, Drew Bethune, head of cancer care in the province, will answer questions about treatment, new technology, prevention and how a major project is going to change care for cancer patients in Nova Scotia.
Robin McGee knows how to fight.
She’s fighting a losing battle with cancer, sure, but she’s also fighting battles and winning: against negligent doctors, for better cancer treatments and for other cancer patients too.
McGee talks with her hands, and she talks fast. She’s a psychologist who works in schools with kids who have behavioural problems. On this winter day, she’s sitting at a table in front of the windows in a lounge room at the Lodge That Gives, where she stays when she travels from her Annapolis Valley home to Halifax for medical procedures.
She recounts her story like she’s told it many times before and doesn’t give much time for someone to digest the incredulity of it all before moving onto the next hard-to-believe moment.
“If this was a movie you’d send it back to the writers and say this could never happen in real life,” she says.
But it’s real. And it happened to her.
The battle before the cancer battle
In 2008 at age 46, McGee went to a doctor with symptoms and an immediate-family history of colorectal cancer. That doctor, and three others, dismissed her. They said she was under 50 and too young. They said it must be a benign condition, an antibiotic reaction, or an inflammation.
“They said ‘no scope for you’ for two years.”
But she was persistent, especially with worsening symptoms and terrible pain. She knows now it was stage four colorectal cancer.
After she received a diagnosis in 2010, she launched a complaint and an investigation with the College of Physicians and Surgeons which ended in disciplinary action for three out of the four doctors.
But she also took on the provincial government.
“It’s also about something remarkable that happened after I had this terribly delayed and bungled diagnostic situation,” McGee says. “When it was time for my chemotherapy, Nova Scotia did not have the best practice chemotherapy for my kind of cancer. It was available everywhere else in the western world, just not Nova Scotia.”
McGee gathered support and lobbied the NDP government of the day and won — but too late for her to use the drug.
“I’m kind of a martyr to my own cause,” she says. “But I’m pleased and proud to tell you since those days, over 1,000 Nova Scotians have had access to the best practice drugs since the days of our advocacy.”
Remission and admission
"Right now those cells appear to be sleeping so they’re not actively growing... That will happen and it is just a question of when."
In a positive twist, McGee’s went into remission for about seven years. In that time, McGee wrote a book in 2014 on her experiences called The Cancer Olympics.
But the hurdles were far from over: The cancer returned in 2017.
“And disturbingly I had yet another bad medical error story.”
A two-centimetre tumour was missed on a routine CT scan. When the tumour was discovered six months later on another scan, it was nine cm.
“Remarkably, I’m a victim of medical error a second time.”
Her surgery last January got the tumour but a biopsy found cancer cells deep in her pelvic side walls.
“That’s not operable, that’s a terminal situation eventually. Right now those cells appear to be sleeping so they’re not actively growing right now, but they will. They’ll just turn on and take over. That will happen and it is just a question of when.”
When her cancer came back, somehow again she needed a medication that was not offered in Nova Scotia. But this time there was more attention on her case and she quickly received a special exemption for the drug she needed.
That massive surgery in January necessitated another major reconstructive surgery (as she puts it: the first one was for the cancer and the second one is to put her back together). The second surgery was so complex she needed to travel to Toronto.
Today and beyond
"one of the worst things said to cancer patients is 'you have to stay positive because if you don’t you’re going to kill yourself.' But, as a psychologist, this is something that does invite despair."
McGee tells her story while in Halifax preparing for the reconstructive surgery. Since much of her tissue is radiated, she needs hyperbaric oxygen therapy (breathing oxygen under pressure for 90 minutes a day) to improve the quality of the tissue to withstand the surgery.
Weeks after the interview, McGee reports the 13-hour reconstructive surgery in Toronto went well, but left her with complications including terrible nerve pain.
McGee, who is very active on social media connecting with other cancer patients, wrote a blog post soon after her surgery in Toronto. She spared little detail, as her audience knows well what it’s like to go through surgery with the pain, the tubes and all the complications. The comments poured in, including this one from one of her followers, Patsy Wilson:
“Robin, you are always a pillar of strength, positivity, courageous sharing and teaching. There is no trophy for such bravery and perseverance, your trophy is your life, your family and all those you have touched and continue to give hope to.
“There is no mantle big enough to hold such a trophy. You are thought of always and by many.”
“They have little neighbourhoods where there’s a ville for people who are at stage four, a ville for radiation, whatever. People support each other on that and you can see the responses,” McGee said. “If you have chemo or something and you can’t get out of the house or can’t possibly go to a support group … these kinds of methods are great.”McGee says there’s simply no substitute for the support she finds through the connection with other cancer patients. She recommends a Facebook group called Colontown, a community for people with colorectal cancer.
As a psychologist, McGee knows better than most how to handle the feelings that come with a cancer diagnosis. And what to do when some says “stay positive.”
She says it’s OK to feel despair and wallow in it for a few days.
“I find that very healthy permission because one of the worst things said to cancer patients is ‘you have to stay positive because if you don’t you’re going to kill yourself.’ But, as a psychologist, this is something that does invite despair. Of course it does,” McGee says. “People should feel their feelings and just have them, don’t fight them. If you feel despair, feel it, don’t fight it and then let it run its course and move on.”
Trust doctors, improve healthcare
On top of a cancer diagnosis and surgeries, McGee has dealt with multiple failings of the health care system. But McGee has come up fighting. She gives talks at post-secondary institutions for students preparing for the medical sector, she’s involved with Patients for Patient Safety Canada and she’s worked as a patient representative on several working groups to improve standards of care. She pushes for change.
When asked what changes are needed in Nova Scotia health care, she laughs.
“You better get out your pajamas because I could keep you here all night talking about what needs to improve in Nova Scotia and Canadian health care.”
Most important is there should be standards of care for everything including cancer care, end of life and diagnostic care, she says.
“So that someone in Cape Breton is going to get the same kind of work up someone here in Halifax would get.”
Even after all she’s been through, McGee says she doesn’t want people to mistrust doctors because most of them are wonderful.
“But people need to know not all of them are,” she said.
If something doesn’t feel right and keeps getting worse, then keep trying to figure it out, she says.
“You just have to keep going. My story teaches us you can’t always believe what you’re told.”