In March, after 3 months on bedrest, Jean Guy had a heart attack, followed by 6 pneumonias, each of which resulted in hospital admissions. At that point, he had not yet received any diagnosis.

It was a living nightmare that found us feeling left behind by the medical system. I call this time “the black hole of Covid”. No one seemed to care about anything else, and if you were sick, you were thought to be infected by the virus and shunned even more.

In August, Jean Guy had several visits to the local ER with sudden and random chest pains that were sharp and stabbing. He had X-rays done and was told that it’s “just some inflammation” and was sent home.

We later found out that these X-rays showed multiple fractured (broken) ribs. But for what I call “the Covid effect”, we were never notified of this and would not learn about these fractures until his myeloma diagnosis 3 months later, in November. 

In September, Jean Guy also started to experience sudden ice pic headaches that would drop him to his knees. He had several visits to both, the ER and his family doctor yet, still no diagnosis. Because of the pandemic, I was locked out of his medical care.

By October, Jean Guy had significant blatant neurological signs. He awoke with tongue deviation, slurred speech, and facial drooping. When I brought him to the ER, he finally had a CT and an MRI. That’s when he was told, in a private room alone, that he had some form of cancer, with a tumour at the base of his skull. At this point, we didn’t know what cancer he had. To be told this devastating, life changing news alone and left there was an unacceptable experience.

When it came time for Jean Guy’s transplant in Sudbury, I was advised not to stay with family since they had school age children. I had thought I could stay at the Daffodil Lodge, a place attached to the cancer centre and hospital. It was affordable simple accommodations for families of cancer patients. When I went to arrange my stay, the space was closed and being used for the growing drug addiction problem during the pandemic. The Northeast Cancer Centre (NECC) of Health Sciences said I could stay at the hotel next door for a 10% reduced rate, which would bring the nightly charge to $129 per night x 30 nights = $3,870. Imagine? Who could afford that? This amount didn’t even cover food! 

We found the 10% to be an insult, especially since living in North Bay, we are just 30 km short of qualifying for government financial assistance for accommodations. Yet, our reality is that the treatment centre is still a 1 1/2 hour drive each way; it's not possible for us to travel this distance -– there and back -– daily in the winter, for a month. This too added to the anxiety with which we were living.

Both Jean Guy and I are retired and on a fixed income. We are aware of how difficult a cancer diagnosis is, and even more so if you are still working and financially need to work. I am very thankful to have insurance for Jean Guy’s treatment otherwise we would have never been able to afford the cost for his stem cell transplant in Sudbury.

In most rural areas, oncologists are caring for multiple types of cancers. As such, and through no fault of their own, they sort of become a “Jack of all trades and master of none” in my opinion.

Being in an isolated northern city, we unfortunately encountered situations that were alienating and non-supportive. As a result, we made the decision to seek out a myeloma specialist during Jean Guy's treatment.

The good news is that the pandemic has opened access to remote areas from major treatment centres. Video appointments have been instrumental in accessing specialists that previously were geographically difficult to consult with.

My heart goes out to those that cannot. But that doesn’t mean that you stop advocating for the best possible treatment and care you can get in this great country.

I would be remiss if I did not mention the huge support we received from Myeloma Canada. I reached out to them when we felt lost and they offered great advice. We cannot thank them enough for the ongoing work they do for Canadians with multiple myeloma.

Also, if I was to recommend another resource that was, and continues to be invaluable, it is the Facebook support group for all Canadians: “Myeloma Canada Patient & Caregiver Support Group”. It made us realize the struggles other rural patients were experiencing.