‘I couldn’t explain what was happening’: Survivor speaks out on life after cancer

More than 90 per cent of people living with or after cancer experience cancer-related fatigue.

After successfully battling breast cancer for five years, Ottawa-based Elvira Spremo didn’t feel like her fight was over. She was so consumed by chronic fatigue that she became a shell of her formal herself.

“I was having a hard time going back to work because I was tired,” she told CTV News Toronto. “And I couldn’t explain what was happening, I had to extend my sick leave.”

She came across an ad on social media for a Toronto clinic called Cancer Fatigue Services, which piqued her interest. After reaching out, she completed some online tests that analyzed her symptoms.

“It actually showed that I was really dealing with a lot of fatigue on different levels,” she said.

After a doctor’s referral, the clinic assessed Spremo’s physical conditions and arranged an exercise program that was intended to help her build strength and energy.

“I was a bit skeptical…but then I was committed because I just wanted to do anything to take myself from that despair of chronic tiredness,” she said. “I wanted to give it a try because I was tired of being tired.”

At the beginning, Spremo admits that it was a challenge.

“I wasn’t able to even property do a squat,” she said. “I was in pain.”

She started with riding a stationary bike at a slow pace, then progressed to high intensity training.

Now, a year later, she feels like herself again. The lingering fatigue is gone, thanks to various programs offered through the clinic, which are mostly covered by OHIP.

Spermo has also attended a social worker-led peer group, offered by the clinic, which has helped teach her how to preserve her energy.

“In the end, it really reflected what was going on with me,” Spremo said

Clinic started to provide help to fill treatment gap

Dr. Scott Adams is the CEO of Cancer Fatigue Services, the clinic which Spremo attended near Yonge Street and Sheppard Avenue. He said he started the service to connect with patients who weren’t getting the right help.

“I have spent my career watching people living with and after cancer get dismissed every time they talked about how exhausted they were,” he said.

Adams said when attending conferences, people would come up to different professionals to discus common cancer symptoms, like psychosocial oncology or nutritional related concerns.

But there was a gap when it came to cancer-related fatigue.

“Fatigue had been the one thing that there was consistently never a place for anyone to go,” he said. “I think the lack of action really is the product of its complexity and the current way our healthcare system is structured.”

He explained that the limited amount of time a patient has with an oncologist doesn’t allow for them to meaningfully dig into all the likely contributing factors behind the fatigue. In turn, the patient is transitioned back to their general practitioner, who often can’t identify the issue.

“Part of the solution is making sure that we assess things comprehensively and give people the time they need to digest the information, so that they can actually have meaningful conversations about it and really understand the challenges that are before them,” Adams said.

A toolkit is needed, but doesn’t exist

Lindsay Timm is the executive director of the Canadian Cancer Survivor Network, which includes Cancer Fatigue Services in their network.

She said having specialized care for something as commonplace and debilitating as fatigue in cancer patients and survivors is a gamechanger, especially since the latter don’t often have a lot of options for in-depth extended care. That can leave survivors who are still experiencing the effects of cancer to feel overwhelmed.

“Essentially, it’s like a mother bird pushing their baby out of the nest and saying ‘Fly,” she said.

The clinic’s focus on exercise as a first line of treatment is hugely beneficial for overall wellness, Timm said.

“They don’t just jump to a prescription, because often it’s sleeping medications that are quite addictive and hard on the body,” she said. “So, using exercise as an intervention is a natural way to like increase energy.”

While there are specialists that cancer patients and survivors can see to treat specific symptoms related to things like nutrition, swelling and skin conditions, Timm said they aren’t found in one place. That means, the patients have to do all the research themselves.

Timm wants to see a directory for physicians who treat cancer survivors, so they know where to send them for continued specialized rehab treatment.

“They do get a small amount of time of rehab given to them, but after that it’s like ‘you’re on your own, kid,’” she said. “They need that toolkit from their physician, but that doesn’t exist.”