KREW KUTS: CBC Cancer Story
By Bernie Krewski
BACKGROUND
As some Echo readers may know, I was diagnosed with throat cancer twenty years ago this fall – October 2024. My cancer experience has been notable for several reasons, one being accessibility to treatment facilities in Edmonton. The distance from our residence to University Hospital is about the same distance between the Seniors’ Lodge and the golf course in Oyen. No one needs to remind me how fortunate that alone has been – I feel it every day! Access to health services, as all of us know, is now a major challenge for everyone!
Throughout these intervening years, Diana Walker and I have had an unusual triadic relationship – she, The Echo, and me. Emails back and forth like a hand saw cutting a thick board! Thus, sending her a CBC news story on June 13 was not unusual. It concerned three of us, long-time patients at iRSM. The Institute for Rehabilitative Sciences in Medicine, world renowned, operates out of Edmonton’s Misericordia Hospital, one of seventeen sites in the Covenant Health Network. Its future, the focus of this story, is uncertain.
Diana’s reaction was immediate: “The CBC story is riveting” - worthy of being republished in the Echo, as is. To seek permission to do so, however, would likely take several weeks. We decided to provide a link to the story for those whose reading habits are online. It begins: “Cancer survivors demand clarity….”
For others accustomed to reading a physical newspaper, the following is an abbreviated summary of the CBC article but in my words, respecting copyright.
MICHELLE FULLER
Michelle Fuller, 55, of Canmore AB, was diagnosed with cancer at age 30. It began with numbness under her right eye followed by a sharp pain in her cheek. The cancer’s primary source, she learned, was in her sinus cavity. During fifteen hours of surgery, she lost her right eye, cheekbone, some teeth, and part of the roof of her mouth.
Michelle became a patient at iRSM in 1999, one of its earliest. Reconstruction of the head & neck following a cancer diagnoses and such radical treatments as she experienced was then new and groundbreaking. IRSM was only six years old, an internationally known pioneer, founded by a dentist/scientist from South Africa and an Edmonton surgeon.
The iRSM interdisciplinary team constructed a remarkable medical device made of medal and plastic, “in house,” called an obturator. It allows Michelle to speak, eat and swallow. However, like many prosthetic devices, it carries risks of infection and requires life-long regular maintenance.
Michelle’s last appointment at iRSM was in May. Her obturator needs to be replaced now. But she learned that the contract of the only specialist at iRSM capable of constructing it ends on June 30, despite his desire to remain practicing there.
Replacement costs are substantial. Michelle doesn’t know where she can go and who can provide ongoing care. “This issue is larger than me,” she says, fearing she may need to travel elsewhere which will incur exorbitant expenses.
BRENDA FREDERICK
Brenda Frederick, 67, diagnosed with bone cancer 23 years ago, also became a patient at iRSM. The cancerous area was in the right side of her upper jaw and cheekbone. During eighteen hours of surgery, these bones were removed and replaced by bone from her leg and hip. Surgical posts were secured in her mouth so she could be fitted with a prosthetic replacement. While there are no clearly visible scars on the exterior skin of her face, the interior of her mouth tells a much different story.
The surgical site is prone to infections, necessitating constant care. Surgical posts deteriorate and require replacement. Dental hygienists conducting regular check-ups are hesitant to clean this area due to its sensitivity. Twice a year she visits iRSM to assess the healthiness of the tissue in that area of her mouth.
Two months ago, she left the Clinic without an appointment, the first time in 23 years. She is shocked and in disbelief about these developments, wondering where she can go for ongoing care. The care she needs, she emphasizes, extends far beyond the care most of us receive when we visit our dentist.
ME
Pat, my wife, interpreted for me during the CBC interview because my prosthetic voice is unclear on Zoom.
I turned 85 a few days ago. Despite one round of surgery and 32 radiation treatments, it took a year to find the primary source of my cancer. That led to a laryngectomy in October 2005, leaving me with no natural voice, impaired swallowing, and a stoma - a hole in my throat through which I breathe.
Radiation helped to preserve my life but destroyed my teeth, all of which were extracted in 2007. Instead of being referred to iRSM, I was sent to a private denturist. The dentures he constructed at a cost of $3,000 didn’t fit. I lived without teeth, pureeing my food for seven years.
I became a patient at iRSM in March 2014. A major barrier was my restricted “jaw opening” – the side effects of radiation. Mine is half the normal amount. Thanks to the skill of the staff and two surgeries to rebuild my mouth, I received dental implants two years later. The result was transformative, leading to a life filled with activism and advocacy – and co-writing in The Echo with Diana Walker.
RESPONSE FROM HEALTH OFFICIALS
Until the Edmonton Journal published a story on April 16, an interview with Pat and me, Covenant Health has been silent. The staff at iRSM have received no information about changes that are occurring and the future of the Institute. They are bewildered. Some were in tears at my last appointment on June 4.
The response by health officials to media inquiries is that “service is continuing” and they are recruiting new staff. Alberta Health Services has declined to comment on this story.
The unanswered question is why Covenant Health, with the apparent support of the current government, is deconstructing an internationally recognized reconstructive treatment facility – a pillar for head & neck cancer patients.
This concludes my summary of the CBC story.
We are deeply grateful to the CBC for publishing our stories and especially to Wallis Snowdon, the reporter. Writing about people like Michelle and Brenda who have lived such painful lives is not easy. If you, like Diana, appreciated the depth of Ms. Snowdon’s account, a brief email to her at wallis.snowdon@cbc.ca would be greatly appreciated.
I also want to extend a special thanks to Diana Walker for acknowledging the relevance of this story and to Kate Winquist for publishing it. You are immensely enriching our prosthetic-driven voices.
POSTSCRIPT
There are dentists and prosthodontists. The latter are dentists who specialize in treating more complex dental matters - restoration and replacement of missing or damaged teeth, dental implants, crowns, bridges, and dentures.
Maxillofacial Prosthetics is a subspecialty of Prosthodontics. It requires years of additional training to rehabilitate patients with defects or disabilities due to disease or trauma. Prostheses are often needed to replace missing areas of bone or tissue and restore oral functions such as swallowing, speech, and chewing.
Maxillofacial Prosthodontists are accustomed to working cooperatively as a team with ENTs, oral surgeons, general and specialty dentists, plastic surgeons, neurologists, radiation oncologists, speech pathologists, anaplastologists and various ancillary personnel.
Dr. Suresh Nayar and Dr. Martin Osswald have been long-time maxillofacial prosthodontists practicing at iRSM. A few days after the Alberta Provincial Election on May 29, 2023, the director and assistant director at the Institute were crudely dismissed – marched to the exit doors of the Misericordia Hospital within the hour. Dr. Nayar and Osswald, normally having five-year contracts, were given a one-year extension, ending June 30, 2024. Dr. Osswald resigned immediately for financial reasons. Dr. Nayar’s last day, as far as we know, is June 28.
We have started a petition to make others aware of this disheartening situation. If you would like to support our initiative, please consider signing the petition at https://chng.it/LBKNqHz7YP.
“DO NO HARM” is a centuries-old mantra in medicine. What is happening in this instance is exactly the opposite of that!