A terminal diagnosis. With those words from a physician, life as you know it, changes – and in a way only those who have experienced it can possibly understand.
It stops people in their tracks. It raises the big questions of life – and death.
What is the meaning of life?
What is the meaning of my life – from here on?
How do I find hope?
How do I stay connected to life – when facing death?
What will my legacy be?
It’s these kinds of questions, in the midst of these kinds of situations, which prompted a new support group offered jointly by the Pastoral Care service and the Social Work program at the Dr. H. Bliss Murphy Cancer Care Centre.
“Living Well, While Living With” brings together individuals who have been diagnosed with advanced cancer. Their passing may not be imminent…but these sessions offer a pathway to follow as they face that reality.
“I felt it was a rare opportunity to interact with others in the same situation as myself,” says Karen Green, who is living with advanced kidney cancer. “I thought I’d gather some ‘coping strategies’ from the experiences of others – and I needed a safe place to share my feelings and concerns.”
Bill Haynes is one of the session facilitators. He’s been a social worker with the cancer care program for 16 years – and says the idea for this support group actually came from cancer specialists.
Oncologists and radiologists say when they give a terminal diagnosis to a patient, it often prompts questions about the meaning of life, or death, or spirituality, questions the physicians feel are outside their medical expertise. When one of them approached the Pastoral Care Service, wondering if this kind of specialized support might be offered to patients in these unique circumstances, Pastoral Care teamed up with Bill at the Cancer Care Centre.
Eastern Health is only the second health organization in the country (after Sunnybrook in Toronto) to offer this kind of support to individuals who find themselves in a unique place of need: between news of a terminal diagnosis – but not ready for palliative care.
“With a late-stage diagnosis, it can be easy for people to detach from the world they know,” Bill says. “This kind of support group really meets a need, allowing men and women to be open about their hopes and fears.
“In fact ‘hope’ is the operative word here – not necessarily for recovery, but to re-infuse hope and meaning into a person’s life – until their last breath.”
The first sessions were held in the fall of 2016 at the Botanical Gardens in St. John’s. Participants came from all walks of life, all backgrounds and spiritual beliefs. What they had in common was a late stage cancer diagnosis – and a willingness to talk about it. Or simply to listen.
Karen says she found the sessions to be exactly what she needed.
“The facilitators were quick to create a welcoming environment, and I felt comfortable sharing my thoughts and listening to the comments of others,” she added.
“The sessions provided a good balance of information and discussion – and I’ve gained a sense of control and optimism in light of the process of examining what is meaningful in the context of the life I’m living – and the legacy I will leave.”
It was easier for some than for others, says Paul Grimes, a pastoral care clinician, based at the Health Sciences Centre. He says a terminal diagnosis leaves many people in shock.
He says the sessions were understandably intense – not unlike archeology – with a lot of ‘digging deep’ into people’s thoughts and feelings.
“Life is lived in the here and now – and even when faced with a terminal diagnosis, it’s how you live – not how you die.”
Bill agrees. “The mind/body/spirit connection within a person gets ‘split apart’ with a terminal diagnosis,” he added. “The body is taken up with numerous medical appointments; the mind can’t think clearly – and the spirit is frozen with trauma. The natural connection is like a system on a computer – you take it all for granted – until it crashes.”
But even then, there is meaning – and hope. One of the sessions’ key questions is, ‘what meaning do people ascribe to their lives that threatens to get lost when disease moves in?’
The sessions are based largely on the teachings of Viktor Frankl – a Holocaust survivor – who maintained that individuals always have a choice as to how they live each day. The facilitators didn’t want the sessions to occupy a dark space – with no expectation of hope. And they use hope as a verb, more than a noun.
“It’s important to see your life as a ‘monument’ – and to remember that the good you have done in your life is secured forever – no one can take that way,” Paul says.
It all resonated strongly with Karen. As the weeks went by, the group discussions and reflection exercises helped her gain new perspectives.
“I thought about the sources of meaning in my life, and then I was able to think about life as a legacy that we live – and will give, one that’s based on what’s meaningful to me. I choose hope as my reaction to my illness.”
Living Well, While Living With is about to offer its second group of eight-week sessions, starting May 8, again at the Botanical Gardens. Some patients have registered already – but there’s still room for others who wish to participate.
Bill and Paul have also shared their approach with employees at Eastern Health, to enhance both their professional practice and their personal lives – holding a number of information sessions for frontline staff at the Dr. H. Bliss Murphy Cancer Centre – including the medical and radiation oncology teams and oncology nurses. Plans are currently underway to offer an extended education session for the oncology nursing staff.
They’ve also been invited to do a half-day information session on the program next month in Grand Bank, for Pastoral Care and Social Workers throughout the Burin Peninsula, and to present at the 18th Annual NL Breast Cancer Conference at the Capital Hotel in St. John’s on May 6.
But the primary focus remains on those who have received a difficult diagnosis and are unsure of where to turn for help. And here’s what Karen Green would say to them:
“I would simply say, ‘you are not alone.’ These group sessions provide an opportunity to express your feelings and concerns.
I’m living well while living with advanced cancer.
I’ve chosen to do that.
You can choose this as your reaction to your illness, as well.”
For more information on Living Well, While Living With, or to register for the upcoming sessions, please call: 777-7604
This story was written by Deborah Collins, a communications manager with Eastern Health, based in St. John’s.