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https://www.infirmiere-canadienne.com/blogs/ic-contenu/2016/04/02/en-harmonie-avec-la-vie

Marj McNeil’s goal for a support group for those with advanced cancer is to reduce isolation and to celebrate life

Apr 02, 2016, By: Christine D. LeBlanc

Marj McNeil has a photograph of herself as an eight-year-old, wearing a nurse’s cap, taking her sister’s pulse. Her family lived with an elderly aunt who needed round-the-clock care, so she grew up with nurses in her New Glasgow, N.S., home. Hers was a musical family. “My sisters and I all played music, and we all sang. It’s just the way it is in Nova Scotia.”

McNeil earned a diploma from the Brockville General Hospital school of nursing in eastern Ontario and started a career that has included staff nurse positions in surgery, maternity and hospice. She moved around with her family, eventually settling in Alberta. Although she took time off to raise two daughters and work as a real estate agent, she kept coming back to nursing.

Twelve years ago, McNeil became the coordinator for the Living with Cancer Program at Hospice Calgary’s Sage Centre. Originally a respite day program, it has evolved into a weekly support group for adults living with advanced cancer and for their caregivers. Working three days a week, McNeil is in charge of program planning, initial intake visits, charting and weekly phone calls to check in with participants. She is supported by two family counsellors, a minister who acts as a spiritual counsellor and multiple volunteers.

She describes her role as one of providing a safe place for participants to be themselves. She plans sessions three months in advance, listening carefully to what’s on the minds of participants and looking for opportunities to celebrate life. A typical session might include a meditation, a song, a drumming circle or a shared memory of someone who has died. Massage, reiki and reflexology therapists volunteer their time and skills on a regular basis, and local musicians often perform for the group. Once a month, a palliative care physician comes in for a question and answer period and the discussion turns to what end of life looks like and how to make informed decisions about care.

To ensure that participants never go home feeling low, there is music at every session. McNeil, who has belonged to some kind of chorus or choir all her life, is ready to harmonize when the occasion arises.

A firm believer in music’s power, she mentions a man with a brain tumour who had lost the ability to speak. On the day before he died, he managed to attend the session and was able to sing. “He sang every word, holding the hand of an elderly woman he had come to know and love.”

The newly renovated room at the Sage Centre has been set up to pamper, with recliners and warm blankets. Snacks and a hearty lunch are provided. Once the doors of the room are closed, participants know they can open up to people who can relate. “They line up for hugs — even the ones you wouldn’t expect to — and we often have hospice staff drop by for a few minutes who say they experience a feeling of peace in the room.”

On the other two days of the week, McNeil visits the participants in hospice or hospital or makes arrangements to connect them with palliative care nurses. When the renovations put the program on hold for three weeks, she mobilized the volunteers to start home visits. These were so successful, she’s continuing the practice.

Patients no longer hoping for a cure have different needs than those in the early stages of cancer, who are trying to beat it and survive, she says. “I’ve found that when people know they’re actually dying, most want to talk about it. They don’t want to hear that they should keep fighting. They want to learn how to live fully and die the way they want to.”

McNeil has always been comfortable with patients who are at the end of life. She says people are more honest and kind when they know they’re dying. “And I get to see our participants at their absolute best,” she adds. Knowing they will be remembered after they are gone is one of the reasons. “They quickly bond and become a community.”

She loves how the program has brought out her creativity, encouraged her to be authentic and given her purpose. Working part time also suits her, allowing her to dote on her five grandchildren and attend their practices and competitions in various sports. She spends a month each summer at her cottage on Nova Scotia’s north shore, where she rejuvenates. “As long as I have the energy, I’ll continue with the program.”

10 questions with Marj McNeil

What is one word you would use to describe yourself?
Resilient

If you could change anything about yourself, what would it be?
I would like to feel more confident when speaking about my program on the bigger stage

What are you most proud of having accomplished?
Raising two respectful, high-achieving daughters

What is one thing about you that people would be surprised to learn?
I am taking a creative writing course and have started to write a book

Where did you go on your last vacation?
To my little cottage in Nova Scotia. It’s right on the ocean

Name one place in the world you’d most like to visit.
I would love to take a riverboat cruise down the Danube

What is the last good book you read?
The Fountain, written and published by my daughter Suzy Vadori

What is the best piece of career advice you’ve received?
I was hesitant to apply for this job, but my last supervisor said, “Marj, just do it — you are perfect for it.”

“If I had more free time, I would…”
Travel across Canada to help others establish programs like ours

What is the best thing about your current job?
The authenticity and openness of participants

Christine D. LeBlanc is a freelance journalist in Ottawa.