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one couple’s fight for blood cancer care in rural ontario: 'we were just lost'
9 minute read
jean guy, right, says he wouldn’t be alive today without his wife and caregiver erin belzile, a registered nurse who retired shortly after her husband.
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living with blood cancer is devastating.
living with blood cancer in a rural area, though, comes with increased challenges, costs and disease care inequities—making the day-to-day that much more difficult.
jean guy belzile, 67, was diagnosed with multiple myeloma in 2020, a blood cancer of infection-fighting plasma cells that affects bone marrow and causes problems such as low immunity, bone damage and kidney failure. the north bay, ont. former chief of emergency medical services for nipissing district is now on the other side of our healthcare system. he says he wouldn’t be alive today without his wife and caregiver erin belzile, a registered nurse who retired shortly after her husband.
“i’m very fortunate that erin was here to advocate for me. otherwise, i wouldn’t be here,” he says, acknowledging her love and commitment which mean the world in cancer care.
painkillers, narcotics and no clear diagnosis
it all started with severe back pain that got to a point where jean guy couldn’t walk. the explanation from doctors was, “you’ve been lifting stretchers for years [in ambulance service]. it’s just back pain that you have to deal with and we’ll give you something to help you with the pain.”
this happened in the early, dark days of the pandemic in 2020 with all the strangeness around getting health services for any issues that weren’t related to covid-19. fear was spreading as fast as the infectious disease. jean guy’s pain worsened and he became bedridden, with erin trying to manage on her own. the only way to get him back to hospital for help was by ambulance.
“he couldn’t walk and they just told him that his back had gotten worse. he had herniated discs but would be ‘best off at home instead of in hospital because of the pandemic,’” she recalls. “he couldn’t even get himself to the bathroom. those were awful days. i refer to it as the black hole, like we felt like we were in this hole where there was nobody available to us. we were just lost.”
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the other route was telling his family doctor that the pain had worsened, which led to prescriptions of medication narcotics. he was using fentanyl patches and oral opioids.
jean guy was reluctant to follow this treatment but saw no other way to find relief. he doesn’t remember much from that dark time because of the effect of the drugs. “i’d rather stand the pain, but the pain was too much. erin was speaking for me because i was totally out of it.”
erin had worked extensively in emergency, helping people in severe pain with heart and gallbladder attacks and kidney stones. she understands pain symptoms.
“the worst pain somebody could have. and that’s what he had. but he had it every day and every night.”
then he suffered a heart attack, possibly from extreme stress or from the cancer yet to be diagnosed. multiple myeloma, the most common blood cancer after leukemia, can cause blood clots. he was flown to sudbury for advanced care in case he needed a cardiac stent or other intervention. but he was discharged within 24 hours with multiple cardiac medications and little explanation.
that black hole became deeper and dark with uncertainty. jean guy developed several bouts of pneumonia. “nobody linked it, but it’s all related to his multiple myeloma. it was very scary,” erin says. “my mother died of pneumonia. so i’m well aware how serious it is.”
she was taking all his vital signs and had to return to emergency because he was struggling to breathe. he was tested for covid many times but all tests were negative. then a hospital neurologist was consulted who linked the back pain to nerve pain, noting narcotics are ineffective for nerve pain. back home with new medication for nerve pain, jean guy was able to walk again.
the reprieve didn’t last. he started having sharp stabbing pains in his chest while he was walking. another trip to emergency followed with x-rays, blood work and an electrocardiogram to measure heart function. nothing was detected. but then he started experiencing icepick headaches where he fell to his knees in pain. another trip to emergency and he was sent home and scheduled for a cat scan as an outpatient, but the wait would be three months. this was in october 2020, when he woke up one day with partial facial paralysis and slurring his words.
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as erin recalls, “i drove him to emerge and went in with him. i refused to leave him and then he finally had a cat scan and mri that showed a tumour at the base of his skull that had lesions all across his scalp that were causing this pain.”
looking back, erin says all his x-rays showed he had a fractured rib. each time he had the sharp pain, one rib broke. “so many things got missed. he could have been diagnosed earlier and treatment started earlier.” she learned that he had five fractured ribs along with fractured vertebrates. there were cancerous lesions on his damaged ribs and vertebrates.
would he have been diagnosed earlier at a teaching hospital in a larger centre? maybe, but erin recognizes that covid was a different world. the north bay hospital was in lockdown so she wasn’t allowed in when the specialist sat down with her husband to deliver the diagnosis of multiple myeloma. “it was a shock,” says jean guy, bewildered. the cancer had spread and he was sent for emergency radiation, in sudbury an hour and a half drive from north bay. it was explained to him this way: “there’s a lot of treatment for multiple myeloma, but i really don’t know, so we’ll refer you to sudbury where oncology will look after you.”
the couple also went to see his family doctor for his opinion who told them multiple myeloma “was one of the good cancers” because it could be treated. after digging for information on her own, erin recognized that there are no good cancers. multiple myeloma is terminal, there is no cure, “it is treatment full of drugs and side effects and money.”
jean guy went through five months of chemo followed by a successful stem cell transplant in april 2021 in sudbury.
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cancer can be more costly and challenging for people in rural areas
this is a bleak but realistic picture of living with multiple myeloma—and it can be even more costly and challenging to navigate for people who live in rural areas. dr. julie stakiw, a hematologist oncologist in saskatoon, sask., specializes in multiple myeloma and empathizes with patients dealing with cancer.
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“the distance that people have to travel from rural areas, particularly in canada, where they might be three to six hours away from a major centre,” she says. “i don’t think that we appreciate the amount of effort and expense that patients have to go through to be able to get care, particularly in cancer with the expense of drugs for cancer care.” that expense is not just the medication, but patients and caregivers taking time away from work, driving to a leading cancer centre and finding accommodation.
“even to get a cat scan or an mri or a pet scan means leaving to drive hours to a larger centre. there are disadvantages from a health perspective to not live in an urban centre.”
patients with multiple myeloma can have bone fractures and back factures, so sitting in a car for hours on often unpaved roads is difficult. for treatment, she says radiation is a specific challenge because it has to be delivered in a specific centre with all of the controls, machines and bunkers required. when patients need consecutive days of radiation treatment, they have to find a place to stay and get back and forth to the clinic.
while chemotherapy and immunotherapy medications are sometimes easier to give in a remote centres, delivering the most leading treatments typically means people need to travel. immunotherapy like car t-cell therapies, for example, are given in major centres because of some of the toxicities associated with the therapy. and while covid ushered in more virtual care delivery, not everyone in rural areas has internet access or the ability to get to a healthcare centre to use public telehealth computers.
she also talks about the allied healthcare supports available at major cancer centres, like social workers, counselling services, pharmacists and dietitians, that rural oncologists don’t have available. also, that rural oncologist will have the added challenge of keeping up with all the different types of cancer and specific treatment to provide appropriate care.
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step back further, and she raises the issue of lack of primary care in rural centres where having a family doctor isn’t a given, so getting referred for cancer care can happen later when the disease has advanced.
“i find patients are becoming or are actually sicker now when they present with their cancer, just because it’s taken a bit longer to get in the door, particularly in myeloma where it often takes a good six months from when a patient has a symptom to get a diagnosis. and by then they get a lot of bone fractures, their kidneys sometimes shut down, they have anemia. they can be in pretty rough shape, particularly if they’ve had to seek out medical attention that might not be readily available in smaller centres. that’s troubling because the sooner we get people in the door, the better shape they’re in to be able to tolerate the treatments that would be better for them.”
trying to trust the healthcare system and stay positive
the journey for jean guy and erin reflects many of these concerns, testing their confidence in the healthcare system which they both had been a part of in their careers. the couple had to stay in sudbury, far from their north bay home, where the radiation oncologist treated the base of jean guy’s skull and the lesions on his skull and back. the extensive radiation was followed by chemotherapy.
“we had to stay in sudbury because there’s nothing available in north bay,” erin says. “you’re in the north. you have limited access to healthcare.”
they had a designated oncologist in sudbury, but not a myeloma specialist who could identify the type of myeloma to plan the best treatment. they requested a second opinion from a myeloma specialist and were connected to princess margaret cancer centre in toronto.
“requesting a second opinion is every patient’s right in canada. and people don’t always do it because you’re in such a vulnerable state looking for help. you’re afraid you’re going to insult their ego and you possibly do for sure,” erin says, but it’s important and the couple has benefitted tremendously through mostly virtual appointments with the myeloma specialist.
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she recognized that jean guy was having severe symptoms like uncontrollable shaking and “steroid rage” mood swings and anger from the medications and doses should be reduced. they connected her with their sudbury oncologist so that she could advise and follow jean guy’s care with virtual appointments after the in-person visits with the sudbury oncologist.
he went through five months of chemo followed by a successful stem cell transplant in april 2021 in sudbury. he had low immunity and contracted c difficile in hospital, spending 18 days in isolation. but he got through it, including a period of just eating rice krispies because that’s all he could stomach.
in february, at toronto western hospital, he had a vertebral augmentation, a spinal procedure where bone cement is injected into a fractured vertebra to relieve back pain. “nothing short of miraculous for jean guy! we are so thankful,” says erin, who has seen her husband heal and enjoy his life again.
it’s not easy because the monitoring continues and cancer can come back. the other lurking issue is that if he relapses and needs more chemo he would not be able to use the north bay satellite chemo department or the closest cancer centre in sudbury, because the sudbury cancer centre is unable to coordinate with any oncologist outside their institution, erin says, adding jean guy is still monitored by the myeloma oncologist at princess margaret.
“this definitely will put us at a huge disadvantage, financially, physically and emotionally, with his future care. in our opinion, care should be coordinated with other cancer centres, especially when they do not have a myeloma specialist available for patients locally.”
erin is determined to make things easier for others in her shoes. she runs a support group for the nipissing district for myeloma canada. “i want to try to help advocates and patients out there who don’t know where to turn and perhaps aren’t getting assessments done by their physicians, which lets their disease go further into myeloma and they have worse outcomes.”
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