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Jamie Belair has been given only weeks to live, but at a time when life is anything but normal for the 36-year-old Ottawa man, staff at Bruyère Hospital and the Bruyère Foundation helped give him a little bit of normal just before Christmas: a night out with his buddies watching the new Star Wars movie The Force Awakens.
It was a welcome respite for Belair, a big science fiction fan who has seen every Star Wars movie multiple times. But he has one more wish to fulfil: Making sure other people diagnosed with rare appendix cancer have more resources and help than he has had fighting the deadly disease.
Belair says he believes he might have been able to push for earlier, more aggressive, treatment for his cancer if he was armed with more information immediately after being diagnosed.
Not only was he left to do much of his own research on international websites about the rare form of cancer, but Belair says he was forced to apply to his private insurance company to pay for a drug prescribed as part of a chemotherapy regime. If he had colon cancer, he says, OHIP would likely have covered the cost of the drug Avastin — at $4,000 a treatment. Instead, he applied through private insurance, which eventually covered the drug cost for multiple treatments, but the delay meant he missed three rounds of the drug because he couldn’t afford to pay for it himself.
A spokesman from the Ministry of Health said although Avastin is not currently covered through any of the province’s public drug programs for appendix cancer, the Ontario Steering Committee for Cancer Drugs is reviewing it for both appendix and small bowel cancer. “However, a final funding decision has not yet been made.” Ontario provides coverage for the drug under the New Drug Funding Program for first line treatment of metastatic colorectal cancer under some circumstances.
Belair said appendix cancer affects about 1,500 people a year in North America and is sometimes misdiagnosed or delayed because it is not as well understood as more common cancers. The fact that it is slow growing and causes symptoms also associated with other illnesses — such as bloating, loss of appetite, pelvic pain and weight loss — means it is often not detected until it has spread.
Belair and a friend are in the process of setting up the North American Appendix Cancer Association, which, among other things, will offer a website (appendixcancer.net) allowing patients to find information and specialists as well as to share information as part of a support group. Belair and a friend also hope the association will help raise money for research into the cancer and support for patients, similar to other types of cancer.
Belair, who worked in IT for an Ottawa company, says he had no particular health problems before he began experiencing extreme symptoms in September 2014. His abdomen was so bloated and distended that he ended up at an emergency department where it was discovered his abdomen was full of fluid.
He met with a gastroenterologist who had a hunch Belair might have a cancer called pseudomyxoma peritonei (PMP) which usually starts in the appendix and often spreads into the abdominal cavity. It took weeks to have that hunch confirmed through a biopsy.
Belair was given multiple treatments of chemotherapy, which were ultimately unsuccessful at slowing the cancer. By then, it was too late for him to undergo the surgical procedure that can extend some patients’ lives.
In mid-December, Belair was admitted to Élisabeth-Bruyère Hospital’s palliative care wing after being told there were no more treatment options to keep him alive.
In an interview from his room, Belair said he hopes in the future there are more options for patients like him with the cancer that, he says, often affects people between the ages of 20 and 40.
“I hadn’t even heard of it and wasn’t aware it was an option,” he said, when he was diagnosed. “I want to bring awareness and make sure people get the treatments they deserve and that they don’t have to jump through hoops.”
Meanwhile, Belair said, his friends and family are helping to keep him occupied with visits. The trip to see The Force Awakens, which was organized by his friends and the Bruyère Foundation just before Christmas, was really special he said.
Peggy Taillon, who heads the foundation, said staff went “above and beyond” to make it happen when they heard Belair wanted to see the movie with his buddies.
“They were really taken with Jamie. He is a really nice young man who has been dealt a devastating hand.”
Taillon said when she heard about his wish she thought: “We have got to be able to make this happen,” and got on the phone.
He and a few friends were given VIP tickets to see the movie at the Cineplex Cinemas at Lansdowne and other friends joined them. It was a night for Belair and his friends to be “a normal bunch of guys just goofing around and having fun,” said Taillon.
“It was a small thing for us to do, but it was just nice. If you were in his shoes, you would want to feel as normal as you can.”
A GoFundMe account in Belair’s name can be found at www.gofundme.com/ybmpr8. Money raised will be used to help pay for his medical expenses.
epayne@ottawacitizen.com
查看原文...
It was a welcome respite for Belair, a big science fiction fan who has seen every Star Wars movie multiple times. But he has one more wish to fulfil: Making sure other people diagnosed with rare appendix cancer have more resources and help than he has had fighting the deadly disease.
Belair says he believes he might have been able to push for earlier, more aggressive, treatment for his cancer if he was armed with more information immediately after being diagnosed.
Not only was he left to do much of his own research on international websites about the rare form of cancer, but Belair says he was forced to apply to his private insurance company to pay for a drug prescribed as part of a chemotherapy regime. If he had colon cancer, he says, OHIP would likely have covered the cost of the drug Avastin — at $4,000 a treatment. Instead, he applied through private insurance, which eventually covered the drug cost for multiple treatments, but the delay meant he missed three rounds of the drug because he couldn’t afford to pay for it himself.
A spokesman from the Ministry of Health said although Avastin is not currently covered through any of the province’s public drug programs for appendix cancer, the Ontario Steering Committee for Cancer Drugs is reviewing it for both appendix and small bowel cancer. “However, a final funding decision has not yet been made.” Ontario provides coverage for the drug under the New Drug Funding Program for first line treatment of metastatic colorectal cancer under some circumstances.
Belair said appendix cancer affects about 1,500 people a year in North America and is sometimes misdiagnosed or delayed because it is not as well understood as more common cancers. The fact that it is slow growing and causes symptoms also associated with other illnesses — such as bloating, loss of appetite, pelvic pain and weight loss — means it is often not detected until it has spread.
Belair and a friend are in the process of setting up the North American Appendix Cancer Association, which, among other things, will offer a website (appendixcancer.net) allowing patients to find information and specialists as well as to share information as part of a support group. Belair and a friend also hope the association will help raise money for research into the cancer and support for patients, similar to other types of cancer.
Belair, who worked in IT for an Ottawa company, says he had no particular health problems before he began experiencing extreme symptoms in September 2014. His abdomen was so bloated and distended that he ended up at an emergency department where it was discovered his abdomen was full of fluid.
He met with a gastroenterologist who had a hunch Belair might have a cancer called pseudomyxoma peritonei (PMP) which usually starts in the appendix and often spreads into the abdominal cavity. It took weeks to have that hunch confirmed through a biopsy.
Belair was given multiple treatments of chemotherapy, which were ultimately unsuccessful at slowing the cancer. By then, it was too late for him to undergo the surgical procedure that can extend some patients’ lives.
In mid-December, Belair was admitted to Élisabeth-Bruyère Hospital’s palliative care wing after being told there were no more treatment options to keep him alive.
In an interview from his room, Belair said he hopes in the future there are more options for patients like him with the cancer that, he says, often affects people between the ages of 20 and 40.
“I hadn’t even heard of it and wasn’t aware it was an option,” he said, when he was diagnosed. “I want to bring awareness and make sure people get the treatments they deserve and that they don’t have to jump through hoops.”
Meanwhile, Belair said, his friends and family are helping to keep him occupied with visits. The trip to see The Force Awakens, which was organized by his friends and the Bruyère Foundation just before Christmas, was really special he said.
Peggy Taillon, who heads the foundation, said staff went “above and beyond” to make it happen when they heard Belair wanted to see the movie with his buddies.
“They were really taken with Jamie. He is a really nice young man who has been dealt a devastating hand.”
Taillon said when she heard about his wish she thought: “We have got to be able to make this happen,” and got on the phone.
He and a few friends were given VIP tickets to see the movie at the Cineplex Cinemas at Lansdowne and other friends joined them. It was a night for Belair and his friends to be “a normal bunch of guys just goofing around and having fun,” said Taillon.
“It was a small thing for us to do, but it was just nice. If you were in his shoes, you would want to feel as normal as you can.”
A GoFundMe account in Belair’s name can be found at www.gofundme.com/ybmpr8. Money raised will be used to help pay for his medical expenses.
epayne@ottawacitizen.com
查看原文...
