‘Will I be OK?’

Hey there, time traveller!
This article was published 16/10/2017 (3218 days ago), so information in it may no longer be current.

Millions of people have experienced the terror of sitting across from a doctor who utters the word “cancer” while delivering their diagnosis.

Many of them are unable to remember anything after that.

Kathryn Hatcher went through it almost a decade ago when she found out she had breast cancer.

“At the time I walked out of the doctor’s office and it was surreal,” says the retired Winnipeg teacher. “I was a bit panicked because I had just watched my mom go through cancer and it was very fresh in my mind.”

Her mother died from a different cancer only months before, so there was some familiarity, but only in a general sense. The treatment road ahead was a big unknown.

“You’re so inundated with information, it’s like brain overload,” says Hatcher, now a patient peer-support volunteer. “You’re going through a lot of emotions — not just myself, but my husband, too.”

Absorbing and understanding any of the information that follows that stunning, life-altering moment is for some, impossible, unable to compete with the internal chaos: what does it mean for partners, children, careers…

And the big one. “Will I be OK?”

It’s often the first question asked of registered nurse Lori Santoro when she meets with just diagnosed patients at CancerCare Manitoba’s Breast and Gyne Cancer Centre of Hope.

“Then that’s usually followed by, ‘I don’t even know who to ask about what,’” says the breast cancer educator for patients and their families. She’s one of two facilitators at the centre; the other assists women with gynecological cancers).

“People are very overwhelmed by the word ‘cancer’ and they’re struggling to figure out what’s applicable in all of that information they’re given, materials full of medical terminology that feel like a new language.”

These challenges are nothing new. In fact, they are the raison d’être for the Centre of Hope, which was launched in 1997. Now celebrating 20 years, the centre has helped thousands of breast cancer patients — mostly women but a handful of men — navigate their own paths from diagnosis to treatment to recovery and, in some cases, to end-of-life decisions.

To mark the anniversary, CancerCare Manitoba has a number of special events planned, including celebrating the centre’s work at Tuesday’s annual Guardian Angel Benefit for Women’s Cancers.

And there’s plenty to celebrate.

The Centre of Hope — located in Wolseley, some distance from CancerCare Manitoba’s main site at Health Sciences Centre — has been a trailblazer in patient empowerment, says Lorena Gerl, program leader of patient information and resource services at CancerCare.

“Because of the difference we saw that this was making, we were able to then, with funding support from CancerCare Manitoba Foundation, expand and offer that same education for women with gynecological cancer,” she says.

“So really this was the cornerstone that made us realize just how important this type of education and support is.”

Hatcher is among the many who found the centre essential in helping her deal with a difficult and surprisingly long experience that took her from diagnosis to breast-reconstructive surgery.

“When I came to see Lori… she wasn’t telling me what to do — that’s my decision,” Hatcher says. “But she helped clarify terms, what’s available, what can I do, where can I go, and so forth.”

That assistance included helping her make a big post-treatment decision: whether to proceed with reconstructive surgery.

“At first I thought it was just vanity,” Hatcher says, adding some women aren’t interested in having surgery. “They can lose a breast or two, and they’re OK with it — I’ve peer-supported some who are like that.

But she is not among them.

“For me, it would be like an unending bad-hair day,” she says. “It would have been terrible.”

Santoro helped Hatcher realize the right answer was the one that would make her happiest.

Fast-forward a few years, Hatcher is giving back as one of about 50 women of all ages and backgrounds serving as peer-support volunteers at the centre.

“There is a very real benefit of talking to someone who has been through it before,” Santoro says.

And it’s not a one-way street. Health-care providers benefit as well. Hatcher and others helped improve the centre’s reconstruction surgery education materials.

“When I first came to the centre, there wasn’t a lot of information on reconstruction, but there was a lot of information on mastectomy,” she says, adding there was a steep learning curve. For example, no one told her reconstruction might involve multiple touch-up procedures, and would take longer than the treatment phase of her care.

That vacuum of information has ended, “thanks to people like me who had been through it saying ‘there is not enough information out there and there are the things we discovered along the way that can help others,’” she says, adding the centre now “has a fabulous education session.”

Much like breast cancer treatment, the centre’s services are constantly evolving.

What won’t change is its role as a source of calm and clarity for patients who are often confused and frightened as they are led through oncology’s fast-paced clinical care process, where time to ask questions and have them answered can be in short supply.

“You need to recognize the doctors and nurses are run off their feet, so you often have only X amount of time before they have to move on to the next person,” Hatcher says.

In contrast, the centre offers a more relaxed environment.

“I am sure I was here for over an hour asking questions, and it’s not like, ‘your hour is up. Get out.’”

 

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