She needs surgery to remove a tumour, but has no idea where she is on N.S. waitlist
'You have bad days when you are waiting for a surgery like this,' says Janet Forsyth
A Nova Scotia woman waiting for cancer surgery says patients are being left in the dark about their own health care as COVID-19 continues to cause delays within the system.
Janet Forsyth needs two procedures: an operation to remove a tumour from her kidney, and a procedure known as a catheter ablation to treat irregular heart rhythms. The cancer has to be removed before doctors can fix her heart condition, known as atrial fibrillation.
In January, she was told her first surgery would be in four to six months. But that was before the Omicron variant forced the cancellation of procedures and put hundreds of medical staff on sick leave.
Forsyth said she has received no updates and has no idea if her operation has been delayed.
'Worrisome' lack of information
"You have bad days when you are waiting for a surgery like this," said Forsyth, one of 26,300 Nova Scotians in line for operations in the province.
"It's worrisome. You just feel out of the loop. You don't feel part of your own health-care team because the information is not back and forth."
Forsyth said she was sent for a followup scan in early April that showed the cancer had not spread, but she was not given an appointment to talk to anyone, including her surgeon, about the results.
She said she's turned to online medical journals for guidance.
"I found data for a three-month [surgery] delay, but I don't think there's a lot of research because surgeons haven't had to ration care this way before, so how do they know?" she said.
"Usually if they see this tumour in my age, it's to come out. And so, are we in unknown territory?"
There is a website for surgical wait time estimates in Nova Scotia, but those statistics haven't been updated since March. The data gives Forsyth no indication of where she is on the wait-list.
Patient calls for more support
She is calling on Nova Scotia Health to set up some sort of communication team to provide support for those who are waiting for surgeries.
"We have to do something as a society to value how we care for our sick," she said.
Dr. Greg Hirsch, the medical director for the perioperative network at Nova Scotia Health, said he feels empathy for patients in situations like Forsyth.
"We're not in a position to reach out to every patient waiting with an updated estimate of time because it's just too dynamic to predict, because we thought we were out of this three times now," he said.
"It's deep concern for patients."
Hirsch said if patients feel their symptoms are worsening, they need to contact their surgeon's office immediately.
But that doesn't help Forsyth, who said she can't plan anything until she knows when she's receiving help. Her youngest daughter is getting married in September.
"I want to be healed up for that," she said. "I want to be recovered and present."