Support network takes to social media to push for fair and equal cancer treatment in southwestern N.S.

In September 2014 her husband Raymond Doucette was diagnosed with brain cancer. The first trip to Halifax to meet with neurosurgeons was a four-night stay. He slept in a hospital bed. She slept in chairs in a family room because she couldn’t afford the hotel stay, nor did she know her way around the city.

It wasn’t the last time a chair in a hospital lounge would be her bed.

Then came the day the family got word that Raymond would require six months of chemotherapy and 33 rounds of radiation. Cancer radiation services are not available at the Yarmouth Regional Hospital. And so the couple would leave their Yarmouth County home on Monday and come back on Friday.

Repeat.

Repeat.

Repeat for six weeks.

“It was such a financial burden for us, but even worse was the pain and heartache of having to leave our children for weeks on end. Not easy for a 4 and an 11 year old to go through,” says Jeffery.

While he was undergoing treatment, Doucette’s stay at the Canadian Cancer Society’s Lodge That Gives was covered. Hers was not. So they spent thousands of dollars on lodging, not to mention other expenses such as food, gas and parking that quickly add up. And then there was the cost of oral cancer medications that weren’t fully covered through Pharmacare and aren’t covered by the province’s public health plan, which led to difficult decisions surrounding treatment.

The couple knew from the start the cancer was not curable. They were hoping for, at least, five years. In February 2017 Raymond died. He was 42.

Financially the family spent thousands upon thousands of dollars during his treatment, but his wife said they lost even more as a family. They lost precious time.

“He spent so much of it away from the people he loved . . . He had to spend so much time in a car travelling, or fighting for more time, away from his kids, in a city that wasn't his home, a room that wasn't our safe heaven, eating meals around a table that wasn't ours. The Lodge That Gives is a wonderful place and you meet people and make special friendships because you have to be there, but it's not home. Why should people have to leave their homes for treatment? Aren't they suffering enough?”

WHY INDEED?

It’s a question many people ask.

Why can’t more cancer services be offered in Yarmouth as they are in Halifax and Cape Breton? Why can’t radiation treatment be available in southwestern Nova Scotia? Why is treatment that comes through an IV covered, whereas treatment that comes in a pill is not?

A new grassroots group has sprung on Facebook hoping to change this narrative. The Yarmouth Cancer Support Network was started on Facebook and within a day or so already had 1,000 members. A few days later when a call went out for more members, more than 700 joined in 25 minutes, pushing the group total beyond 2,000. And the numbers keep climbing. The person who started the group is Yarmouth resident Derek Lesser. He says he was inspired to start the group because of Yarmouth resident and town councillor Sandy Dennis who, despite battling cancer herself, still has the drive in her to tackle the radiation services issue.

She brought the issue to a town council meeting prior to her own weeks of radiation treatments in Halifax, where during other appointments she heard stories from many people about the financial, physical and emotional burden of having to receive treatment away from home.

“I felt it was time to get a larger group together to find out what all the obstacles for cancer care that exists in Yarmouth and how we can collectively solve the issues,” says Lesser, who is also a close friend to Jennifer Jeffery and saw what her family had to deal with to access treatment in Halifax and leave their children behind.

Lesser’s daughter Julia has a form of leukemia she’s been battling. She’s doing well because of the oral medications she takes. But like others controlling their treatment with  pills she’s not immune to the financial stress of her drug not be covered by the province.

And then Lesser sees other people who have the financial, emotional and physical stress of having to leave their community to access some of their treatment.

“Yarmouth needs a larger cancer center with radiation. This type of treatment causes lots of sickness and yet all these brave people spend so much time travelling and away from their family and familiar environments,” says Lesser. “The fact that so many people are joining the Facebook group shows how many are, and have been, affected by cancer and even more impressive is how many people are willing to step up and help solve the problem.”

On June 14 Lesser met with Yarmouth Mayor Pam Mood to discuss what supports local government can provide.  Lesser says area MLAs Zach Churchill and Chris d’Entremont already recognize the importance of more cancer treatment access. The newly formed Facebook group is looking to convince all of government of this as well. To do so people are prepared to share how their lives have been impacted.

BEING HOURS AWAY

Jennifer Jeffery isn’t the only family member who has slept in a chair.

On the Yarmouth Cancer Support Network Facebook group others describe the impacts of having to travel away from home for treatment.

“I spent many nights sleeping in chairs at the hospital because I couldn't afford a hotel room,” writes Carmen Hattie-Thibeau, talking about the times her husband had to make trips back and forth, back and forth, for treatment. “And you can't put a price on the stress and anxiety of wondering if you can afford to take time off to always be there with a loved one.”

“Being told you have cancer is just the first part of the journey and the fight you have to endure,” shares Billy Bain. “The trips to Halifax for 10-minute meetings. Then you start your treatments in Halifax and the cost is unreal. It's hard to keep up the fight to survive when you have so many other things to worry about. I feel so sorry for the people that have to go through this ordeal . . . It's a hard road.”

Denise Miller writes about the financial stress when you don’t know if you can cover the costs of treatments –  “It’s scary enough having cancer, but to have to worry about the cost of treatment,” she says. Then add to this toll of travel.

“I travelled back and forth so many times in the winter months. Sometimes it only took 15 minutes (for an appointment). To me that’s insane. The things that go through a person’s mind while taking that three-hour drive to Halifax turns into forever,” Miller says. “Once I had to travel back on the shuttle alone and sick. It shouldn't be that way. Family can’t make cancer go away but they sure can put their arms around you, hold your hand or just be their if things were in closer reach.”

WHAT ARE THE ODDS?

In April the Tri-County Vanguard interviewed Dr. Drew Bethune, medical director of the Provincial Program of Care for Cancer with the Nova Scotia Health Authority, about the possibility of expanding radiation services to southwestern Nova Scotia. At the time he said locating radiation services – specifically a linear accelerator, the type of machine needed – at the regional hospital in Yarmouth has been discussed, studied, contemplated and explored. And still there is no straight forward answer.

“I’ve discussed it with the (hospital) foundation in Yarmouth a couple of times over the past eight months or so, and I’ve discussed it with the radiation therapy department in Halifax here,” he said.

While the emotional answer is an easy one, the financial ones aren’t as straightforward. Bethune said a 2014 document estimated that to build the housing unit and then install a linear accelerator in Yarmouth the cost would be around $40 million. The annual cost of maintaining it would be about $3.5 million a year. At that time, the cost was seen to be too high and not feasible to proceed.  

Still, Bethune wasn’t prepared to outright dismiss the possibility in the future. However aside from cost the question also becomes the size of the population base that would access this treatment, although essentially the two go hand-in-hand. Population base is an important factor, especially when justifying costs.  

“The feasibility? It’s very borderline because of the population base and the cost of the machinery,” Bethune said in that interview. And as of yet the population base hasn't been high enough. The machines are also specialized and complicated. In Halifax there are 10 PhD physicists who run and adjust the linear accelerators there, Bethune noted.

Bethune, meanwhile, said a goal through the cancer care program is to try to deliver cancer care to patients at home, or as close to home, as much as possible. Examples he gives is improving consultation services for radiology therapy so people don’t have to travel to Halifax, having more visits by radiation oncologists to places like Yarmouth and enhancing the use of telemedicine/tele-oncology. Exploring transportation options is something else that's been looked at. In other words, you perhaps can't remove all of the burdens on patients, but you can try to ease it where possible.

COMMITTEE STRUCK

The Yarmouth Hospital Foundation, on average during the past 10 years, has contributed in excess of $390,000 annually towards hospital equipment and infrastructure through its fundraising. Since 1970, the foundation has successfully raised over $17 million in support of the regional health complex.  

Although no official campaign has been launched, the foundation has put radiation on its radar. It has a committee that is looking into the issue of a linear accelerator for the Yarmouth Regional Hospital.

“It’s definitely something that we’ve discussed,” says foundation chair Greg Barro, saying some of the first discussions came up around 2012 but didn’t go far. In June 2015, a meeting involving the foundation and hospital and health officials was held, with tours taken of the Yarmouth hospital. At the time, Barro says, the purchase of linear accelerators was being looked at for Halifax and Cape Breton. Again, not a whole lot came about out of that for Yarmouth.

But the discussion isn’t going away, he says.

In 2016 the foundation board approved a motion supporting the placement of radiation services at the hospital and pledging its support.

“It’s definitely something that we’re behind and are interested in. There is a committee that meets regularly to see what we can do to move it forward,” Barro says, adding the foundation hears a lot from the public about the need for this type of service in this part of the province.

“The benefits are obvious if you had that around here,” he says, noting they’ve heard stories where the cost, the travel and the inconvenience of not being able to access treatment close to home has affected how some people pursue the treatment they require, or, worse yet, don’t pursue it.

From a financial perspective, asked if bringing radiation services to this part of the province is beyond reality, Barro doesn’t think so. The government would pay a large share and he says the foundation could launch a campaign that he feels the community would strongly support. One of the hardest things, he says, is to actually figure out for certain what the cost would be. He says the foundation has looked into getting a more specific dollar figure to know exactly what they are dealing with. And not only quantify costs, but need as well.  

Barro believes if radiation services were available in southwestern Nova Scotia, the reach for radiation services could extend beyond the Yarmouth, Shelburne and Digby counties that are served by the regional hospital – perhaps into Queens and Annapolis counties as well, he says, if people don't want to be in the city.

(Note: We're removed an earlier stat about cancer cases in southwestern Nova Scotia. We want to seek more information on that before it's included in the story.)

THE GOALS, THE HOPES

Derek Lesser, meanwhile, strongly believes people would be willing to help fundraise. Lesser again notes goals of the grassroots Yarmouth Cancer Support Network Facebook group is for fair and equal access to cancer treatment – this includes pushing for radiation services, even though it could take years to realize – if it ever happened – and pushing to see the province cover the cost or cancer medications that are taken orally, just like it does when it comes to chemotherapy.

But another important goal of the new group is to provide support to one another. To provide information. To exchange ideas.

“We have some great cancer groups in our area that help cancer patients as well and we all need to see the great work they are doing and support them, “ says Lesser. “The other objective of the site is for people to share their stories and network and connect with others going through similar experiences.

“I am hoping in time it becomes a great online community for knowledge when someone is diagnosed. Groups like Gilles Boudreau are there for the financial support and we want to be there more emotional support,” says Lesser. “There are not many of us that have not been touched by this terrible disease.”