Chronic disease impacts the bottom line and the lives of survivors
It’s a big pill to swallow. Never mind the words, “you have cancer,” but what comes with those three little words is something many don’t anticipate.
Labeled as a big expense, the true costs of cancer go far beyond the finances. What’s to say the psychological or relationship burden a cancer diagnosis brings with it doesn’t cost the same if not more than the treatment?
Richard Erlendson, an instructor at Mount Royal University, lost his wife Marj Erlendson to peritoneal cancer roughly a year and a half ago.
“It’s quite rare, you have a peritoneum, which is a sack at the front of your stomach and kind of holds the organs in and it’s lubricated,” Erlendson said. “The cancer cells move around on that lubricated peritoneum and then the cancer spreads to all the organs. It’s sort of cancer of everything in the end.”
Diagnosed in 2009 after she underwent a routine hernia surgery and lab samples came back positive for cancer, Erlendson described the few days after receiving the news as “anticlimactic.”
“[The doctors] didn’t describe it as a terminal cancer, they told us to think of it as having a chronic illness,” Erlendson said. “Since I’m an academic and a journalist, I started researching it and in the weeks and months that followed, I figured out that this is a terminal cancer.”
Dr. Linda C Watson, lead in person-centered care integration with CancerCare Alberta, describes the typical initial reaction among cancer patients as that moment of “everything is different, I don’t know what to do.”
Watson explained the first phase of a cancer diagnosis involves determining exactly what the cancer is.
“In that very first phase, you can’t make decisions because you have to wait to know what it is.
“There’s this terrible experience of not knowing what you can make decisions about,” Watson said.
Erlendson found after his wife’s diagnosis that doctors were more than willing to answer any questions they had, but as he put it, “you don’t even know what to know or ask,” he said.
“Oddly enough nothing changed,” Erlendson said. “In her case, my wife was an exceedingly upbeat, energetic person, positive and optimistic, so she carried on life completely normally.”
Nothing discontinued after his wife’s diagnosis, Erlendson said, “she said yes to all invitations, she was extremely social, we continued hosting people and being out and about.”
Erlendson found his wife’s positive attitude to be differing from his own a few weeks after the diagnosis and said he was “sad about my wife having cancer and seeing her slowly deteriorating, knowing she was dying with no hope of recovery.”
“For months on end I would be very close to tears at any given moment,” Erlendson said. “I was also – the word’s not confused or disoriented – but I would misplace the cars keys, I lost my wallet, or I put gas in the diesel Jetta, and I put diesel in the gas Civic.”
Erlendson described the feeling as being “present but not present.”
A New Normal
A 2012 study done by the Journal of Oncology Practice about the “physical, psychosocial, relationship, economic burden of caring for people with cancer: a review,” reported caregivers experiencing surprise, shock, disbelief, anger, distress, fear and depression in response to a cancer diagnosis.
“That (feeling) really continued throughout the entire process. I was focused on her as her major caregiver and I continued working full time,” Erlendson said.
The same study suggested that there is a greater impact on the caregiver and family members in wake of a cancer diagnosis than the patient.
Erlendson said it may be tougher for the loved ones of a patient since “we’re the ones who are going to be left here without the other one.”
Watson suggested a good way to bridge the gap between differing feelings was to have “good communication skills, understanding that that’s a common experience and normalizing that,” she said.
“Supporting each other in having conversations with each other around what they’re feeling and knowing that’s really healthy for families to do that,” Watson said.
Erlendson typically spent four or five days of the week taking his wife to appointments or blood tests, all while working full time.
Despite the chaotic schedule, the pair found ways to normalize life the best way possible. The two carried on with regular meals, took turns reading to one another – something they had done throughout their marriage – and watched movies.
“We would have fires, or my son’s a violinist so he would play for her a lot,” Erlendson said.
Watson described cancer patients very commonly finding “a new normal or a new everyday.”
“The family and the patient try to create some kind of familiarity in this new role that they’re in with cancer,” Watson said. “As they do that, they get healthier. It’s about creating a new normal, a new everyday.”
“My wife had literally hundreds of friends and kept in touch with people,” Erlendson said. “One of our friends created a meal plan for us and they made meals for us for at least a year and a half.”
Photo by Kassidy Christensen
Support systems were a plenty for the Erlendson’s, anywhere from their small family of three to a variety of groups the couple had joined over the years.
“[We had] enormous groups of people from our various communities: Our faith community, summer camp community, reading book club. We didn’t just have our communities from Calgary either, but also from Grande Prairie where we used to live,” Erlendson said.
Since Erlendson’s wife was terminal from diagnosis, they entered into the palliative care system in the final weeks of her life and found their nurse to be one of their biggest support systems.
“This nurse was amazing, she and my wife met spirit to spirit and were very similar, outgoing, sharp, funny, and witty,” Erlendson said. “She met my son, and he just worships the ground she walks on.”
Erlendson, as the spouse of a cancer patient, also felt a connection with their nurse.
“I count those final weeks and days as a beautiful experience. It was the hardest thing I’ll ever experience I’m sure, but I can only describe it as beautiful,” Erlendson said.
You’re Not Alone
Although cancer survival rates are now three out of four diagnoses, based on statistics from the Canadian Cancer Society, one quarter of diagnoses go down the palliative care route.
Dr.Eric Wasylenko, a palliative care physician with Alberta Health Services, describes palliative care as “helping people to be as functional as they can be with the other aspects of their lives, the relationships, their legacy,” after receiving a terminal cancer diagnosis.
Palliative care focuses around how to cope with the diagnosis and the potential of losing a life, Wasylenko explained.
“People didn’t know what to say so they stopped calling”
-Dr. Linda C. Watson
Through palliative care, patients have access to a whole team of professionals, including nurses, occupational therapists, physiotherapists, respiratory therapists, or social workers.
“We’re hopefully, in an appropriate way, attending all the health aspects,” Wasylenko said. “We say never use the language, ‘I can not help you anymore,’ I might not be able to cure your illness, but I can always help you.”
“We’re trying to help people manage their symptoms so that they don’t suffer,” Wasylenko said. “We also want to help them manage their symptoms physically, spiritually, relationships wise or psychologically so they can accomplish their aims as well as they can with the time or life they have left.”
Wasylenko said palliative care work is about normalizing the experience by “still recognizing the uniqueness of their loved one and their own experience and bringing together a community of support, rather than somebody who has to do this on their own,” he said.
“You don’t have to experience this alone, I think it should be shared and I think that’s one of the things that helped me through it,” Erlendson said. “It’s an exceedingly difficult period for me.”
From a financial standpoint, Watson explained it’s tough to quantify the actual cost of a cancer treatment since they vary from one type of cancer to another.
“The bigger challenge is around lost income,” she said.
Based on a study from Current Oncology, “Estimating the national wage loss from cancer in Canada,” in 2009 the average loss of income for Canadian households after receiving a cancer diagnosis amounted to $3.18 billion. This meant an average annual drop in income of 26.5 per cent, or $4,518, compared to general households.
Fortunately, throughout his wife’s battle with cancer, Erlendson could keep his finances in check since he worked full time and his wife was receiving her teacher’s pension.
For many Canadians, being able to manage the expenses comes down to whether or not they have third-party insurance. Although insurance can be the saving point for families, there are still out-of-pocket costs that can lead to their financial downfall.
Additional costs can amount to drugs that are so new they aren’t on any pre-approved drug lists, specialized equipment that has to be paid out-of-pocket, or surprise costs, for example paying for parking at the hospital.
In a study done by the Canadian Cancer Society in 2009, analyzing cancer drug access for Canadians, it detailed newer cancer drugs taken at home can cost more than $20,000 a year.
“There’s no end of syringes and tubing for the IV drip at home,” Erlendson said. “I would go to pick up this enormous order, which would be about every third day and there’d be quite a long list of things that weren’t covered, like gauzes or sanitary wipes. If I had kept the receipts it would have been thousands of dollars.”
Although the costs weren’t debilitating, they were “for sure a surprise,” Erlendson said.
The difference would have been if Erlendson’s wife was still working and had to discontinue work due to her illness.
“That would have been crippling,” he said.
When faced with insurmountable expenses, patients sometimes opt for lower-dose treatments so they can cover the cost of symptom-managing drugs, Watson said.
“Some people can’t afford to pay for that so we have to give a lower-dose treatment, which ultimately may have less-positive outcomes,” Watson said.
With varying true costs of cancer for patients and their families, it is important to include people in the journey, regardless of whether it is a positive or negative outcome.
“Rather than holding out I think people should reach out to friends and family members, include them, and normalize it,” Erlendson said. “It (death) is a normal part of life.”
Watson explains in wake of a cancer diagnosis or possible death, people don’t know how to approach the patients.
“People didn’t know what to say so they stopped calling and a lot of people say they really know where their true friends are because lots of people get this sense of being talked about behind their back about what’s going on,”Watson said.
Cora Carter, a brain tumour survivor, has known her fair share of battling cancer.
“I was diagnosed in 2006 with an atypical meningioma brain tumour,” Carter said. “It’s a brain tumour that is not benign and it’s not malignant, it invades the meninges of the brain.”
After a trip to the emergency room due to a seizure, Carter and her family found out she had a tumour in her right frontal lobe. A mere four days later Carter was hospitalized, she went under the knife to have the tumour removed.
“I don’t think we ever really discussed, ‘you have cancer,’ I think it was more just you have a brain tumour right now because they didn’t know what it was going to look like, they didn’t know until it was biopsied,” Carter said.
The reality of her brain tumour didn’t seem to be true until the night before her surgery and Carter was moved into the oncology ward.
“That really freaked me out because it was something we never discussed,” Carter said. “(It felt more real) when I moved into that ward. I kind of was like I don’t understand, when did this change from just a tumour to something more.”
During the 14-hour surgery, which initially was expected to be an “in-and-out surgery,” according to Carter, she stroked three times.
“They stroked me because the tumour had grown around the blood vessels, so they cut them to get rid of all it,” Carter said.
Carter explained since she stroked three times, she was temporarily paralyzed on her left side.
“(I was paralyzed) for about two days, slowly I started relearning how to use my left leg and my left hand,” Carter said.
Prior to the surgery, Carter’s fears were based around the unknown, which quickly changed post-surgery, when her feelings switched to frustration.
“After the surgery the feelings were frustration, learning how to rework my hand and leg, stuff that should be easy but wasn’t,” Carter said.
Roughly seven years later, Carter’s fears returned after a routine visit with her doctor.
“It was a little strange because we found it (a second tumour) in May of 2013, and then I completed the fourth year of my degree knowing that I had a tumour hanging out in there,” Carter said.
The tumour was removed a year later in May of 2014, because Carter wanted to complete her history degree in case after her second surgery she was left with brain deficits and was unable to finish.
The second time around, Carter’s fears centered on being left paralyzed, or not having the same brainpower as before.
“I think my brain function is the same, but I have to have more brain mapping done,” Carter said.
“I don’t notice any deficits.”
Throughout Carter’s battle with two brain tumours, her family was by her side to support her in all ways.
Although the financials were not a major concern for Carter and her family, the small town where she is from, came together and brought meals or other forms of support to the family.
“And then the second time around we were able to stay at a Ronald McDonald house for adults called Valor house,” Carter said. “It’s for military and RCMP serving and veterans and their families, there’s only one in Canada in Edmonton.”
Thanks to the care facility, Carter and her family had a place to stay during Carter’s treatment. “It ‘s a really great facility so we didn’t have to worry about hotel costs,” she said.
On top of having a care facility to stay in, Carter didn’t need any additional specialty equipment.
One of the struggles he faced was maintaining relationships during her second round of the brain tumour.
“I think it’s been hardest on my friendships because people kind of stop asking how you’re doing, or it’s more of a burden to have a sick friend than a healthy one,” Carter said.
Carter explained how she tried harder the first time she had the brain tumour to maintain relationships with friends, but the second time around she figured, “I’m an adult now, if you’re really not a true friend then see ya later.”
Despite struggles with friendships, Carter grew closer to her family, particularly her grandfather, who stayed by her side through her first brain tumour.
“I think having my grandpa there kept my spirits up,” Carter said. “My grandpa survived cancer three times, and then he wasn’t there for my last surgery because he passed away. But having him around the first time kept my spirits up.”
Carter remembers one of her favourite things about him was “seeing his smiling face there,” while she was recovering from surgery.
“I think I was more connected to him after that experience,” Carter said. “He understood more than other family members.”
Carter said her experiences having multiple brain tumours was nothing she’d ever expect, but nonetheless looks at it as a good experience.”I think of it as a good experience because it’s molded me into the person I am now,” Carter said.
“It taught me how to overcome challenges and how to be your own advocate through the medical system; when you’re not feeling well you have to push for what you need.”“it should never be a loss of dignity”
-Eric Wasylenko, Alberta Health Services
Not only has she overcome two brain tumour diagnoses, but Carter now helps out with the Pediatric Neurosurgery Kinds Fund.
“They run their own camp and it’s a really good opportunity to mentor the younger kids and show them that this is something you can overcome,” she said.
Carter is in the process of recovery from her second brain tumour surgery from May 2014.
Wasylenko said there are potential big losses with a cancer diagnosis, but there are also potential huge gains.
“Sometimes the cost is relationships, a personal sense of themselves. Sometimes it’s loss of economic wholeness, but in my view it should never be a loss of dignity,” Wasylenko said. “When people say they’re vulnerable, they lose dignity, they’re forgetting about the fact that we live as human beings and relate to each other.”
“A lot of people say after they’ve received their diagnosis that giving and receiving that much love and support is a revelation to them, they feel really loved, supported and wanted,” he said.
Ed. Note: Richard Erlendson is a professor for the faculty of Communications at Mount Royal University.