The gift of time in the face of death
Because of a brain tumour Joen Gingell has been told she has five months to live. Quality over quantity, she says.
Joen Gingell is a firm believer in quality over quantity. It's this philosophy that will get the 68-year-old woman through the rest of her life. Time is not on her side. Recently diagnosed with a brain tumour, she and her husband Robert were told she had five months to live.
Surgery was an option. But it was dangerous with no guarantee of survival.
She could die on the operating table.
If not, she could be paralyzed. She could lose the ability to speak. She would do six months of chemotherapy and dozens of rounds of radiation. If all ‘went well' she might see 16 months.
Do the surgery, her husband said, wanting as much time together as they could get.
She said yes.
But that night back home, her thoughts kept her awake. The next morning she looked out the window and saw two chickadees skipping through the snow.
“I said, I want to die here. We love this place. Why would I want to die in a hospital?” she says about their dream home on the lake in the Municipality of Clare in southwestern Nova Scotia. Radiation isn't done in Yarmouth, so they'd have to spend much of their time in Halifax. She didn't want that. Her husband understood.
Telling their son Jason was hard. But he understood too.
THE CHANGES
It all started four years ago. When walking, Joen says it often felt like she was slipping on ice. Around two years later, she lost control of her bladder. She'd wet herself but couldn't feel it happening.
The couple had long ago lost their family doctor, so she went to clinics. It's easy to get lost in the shuffle when you don't have a family doctor. Follow-ups aren't happening. Dots aren't connected.
She was put on different meds. They didn't help. They made her tired, and they didn't ease the back pain she was also having. Things kept progressing in the wrong direction.
“I'd get fuzzy-headed. It feels like my whole right side is gone. Dull, dull, dull,” she says.
She remembers a friend visiting one day when it happened. Joen got up to do something and froze in place. “Did you forget what you were going to do?” her friend asked.
She had. But not only that – until she heard her friend's voice, she had forgotten she was there too.
“I'll be making supper and it comes over me. What was I doing? Making supper. What was I making? Chicken is on the counter. What was I doing with the chicken?” she says.
In November, during another clinic visit, she was seen by Dr. Alain Blinn, to whom the couple is indebted. He couldn't believe she'd never been sent for an MRI. He ordered one, and a CT scan, which was done first. He wondered if she had MS. The scan showed she had cysts on her ovaries and a tumour in her brain. The MRI appointment was pushed up.
In Halifax, they met with neurosurgeon Dr. Adrienne Weeks, who said the tumor was six-by-four centimetres. Not only was it large. It was baffling.
“She said, ‘see this part here, that's one type of cancer. See this part here, it's another type of cancer. You've had two different tumours that joined',” Joen recalls.
Even with surgery, there was no way it could all be removed.
LIFE IS A HIGHWAY
Throughout their 45 years of marriage, the couple has moved a lot because of Robert's work.
They've lived in Montreal, Labrador City, Calgary, Bermuda and numerous places in Ontario.
Their son was born in Labrador City. They moved there not knowing a soul. When their landlord heard of this, he spread the word. Suddenly 15 strangers arrived bearing gifts.
They had never met people as kind as those in Newfoundland – that is, they say, until they met the Acadians in southwestern Nova Scotia, and that warmth and sense of community was back in their lives.
Eight years ago, they had been seeking a place to retire. It would be their 18th, and final, move. Ontario is expensive, so they expanded their search east. Quebec. New Brunswick. Cape Breton.
One day on Google Earth, Robert saw all of the lakes in
southwestern Nova Scotia. It was instant love.
They came for a visit and saw five houses. One they were drawn to. It had been used as a camp and hadn't been lived in for years. They made arrangements to purchase it.
They knew it would require work. Still, they were excited.
Robert retired on a Friday in July 2014. By that Monday, the movers had come, and the couple was en route to Nova Scotia with their two dogs. Earlier in the month, the remnants of post-tropical storm Arthur had passed through. When they arrived at their new home, water was pouring down the basement
wall.
The person they purchased the property from helped them a lot, hiring workers to fix the issue. It was discovered there was no weeping tile, so it was installed. The person they bought the home from covered the costs and contributed towards the cost of storing their furniture.
There had been an inspection of the property, but after the couple moved in they noticed holes in the insulation. They found carpenter ants. Between that and water damage, the home's front was rotting away. It had to be replaced. Support beams too.
Over time windows needed replacement. The roof had leaks and was replaced. New plumbing was needed. The hot water tank went kaput. And on it went.
“Here we thought we'd move in and only have to do the kitchen,” Joen says. “Instead, it became a money pit.”
They maxed out a line of credit and their credit card.
And yet, not once did they regret their move.
“The best thing we ever did was move here,” Robert says.
“Every day, we'd wake up and look outside over the lake and say, ‘How lucky are we?' Look at where we live,'” says Joen.
It wasn't just the location; it was the people. They started making wonderful friendships. There were gatherings, suppers, ATV rides and an introduction to rappie pie.
Both being pensioners and low income, they had a timeline figured out to pay off the renovation debts. Joen's mom lived to be 88. Her mother's sister was 103. Robert's grandparents lived to be 95 and 98. Longevity runs in the family.
“We thought, we'll have it paid off by the time we're 75,” says Joen. “But then life goes, Hello!”
And now, within months, she'll have to say goodbye.
HER DYING WISH
With her income mostly paying down the debt, Joen fears that after she dies, Robert, in his early 70s, will have to sell the house and rent an apartment.
He's prepared to do that. Her heart can't bear for that to happen.
There's a sign over their front door that reads: Living the dream. Her dream is that he stays.
Joen started a GoFundMe page asking for donations. It wasn't an easy decision. They are both very uncomfortable asking for help. What would people say, or think?
Eventually, Robert relented. “I'm doing this because this is her dying wish.”
Some people have been cruel in their comments, saying they dug the hole they're in.
Others have been generous and compassionate.
“We bought this place because Robert wanted pine trees. I wanted it because it has a beach by the lake. Robert wants to be cremated and put under the pine trees. Me, being a swimmer and loving the water, I wanted my ashes sprinkled on the lake,” she says. “Robert said, ‘But then I'd miss you. You'd float away.'”
He suggested sprinkling her ashes in one of the flower gardens she's planted. Then every morning, he could sit there with his cup of coffee and talk to her.
“I said that's beautiful. I like that,” says Joen, adding, with her trademark humour, “So that's another reason I don't want to sell the house. Because I'll be left behind.”
THE GIFT OF TIME
While some people may not want to know they're on borrowed time, the couple says it's a blessing. Bills and their truck, which were in Joen's name, have been switched into Robert's name. They've been making arrangements for palliative care and also assisted dying if it comes to that. Funeral arrangements are being looked after. Joen is teaching Robert to cook her favourite recipes.
She feels it's important to remove burdens from her family.
“People ask about me. But what about the ones left behind?” she says.
Joen has had cancer twice before. Twenty years ago, she had breast cancer and almost didn't survive.
“I've never been afraid of dying,” she says. “Now that I'm 68, I've lived a good life. I feel I've lived a long time. Having breast cancer and surviving it, I had 20 more years that I didn't think I'd have. So I was given the gift of time.”
Because of Dr. Blinn, they say they've been given the gift of time again. Time to prepare. Time to be together.
“Quality over quantity, that's what matters,” says Joen.
“I am at peace.”