Des Smith has an outlandish sense of humour… the kind that makes you laugh out loud even though it’s totally inappropriate given the crushing details he’s sharing about his life careening off course in his 50s.
Life-threatening leukemia out of nowhere at age 53.
A job lay-off due to the pandemic less than a year before illness.
Mounting costs and no government funding.
How is this man cracking jokes?
“I recently went to Vancouver to visit my 83-year-old mom and 96-year-old stepdad and guess what? We are on exactly the same schedule!” cackles Des. “Get up late, eat something, go back to bed. Get up again, go the bank, write a cheque, come home exhausted, take a nap. Get up, eat supper, go to bed. It’s like I’m in my 90s.”
After two and a half years of intense cancer treatment, Des is the first to say, he’s lucky to be alive. Lucky seems like a stretch though, given the reality of his day-to-day challenges. Played out just by walking around the house, he’s a far cry from the sports-minded computer draftsman he once was.
“In 2022, I hit my ‘lifetime dose of chemotherapy’ and spent the better part of that year in bed,” said Des. “When you can’t get up and keep moving, you lose all your muscle and bone mass. I went from 165 pounds to 120 – my Grade 8 body weight, only bald.”
Now, a few months post-treatment and considered ‘in deep remission,’ Des fits the government classification of someone who “will be able to return to work in any job in the future.” This is how it’s stated on Des’s file.
“I know it’s still early after treatment, but right now I can barely walk due to severe neuropathy, my brain is totally fried, and I can only stay awake for four hours a day,” said Des. “I would say as an employee I’m pretty unreliable. I have energy one minute, then it evaporates. I’m a total flake.”
What Des gets fired up about, is the fact that because his partner has a job with a health plan, he hasn’t been able to qualify for any government funding, hence the pair have spent their entire retirement savings, and gone into debt to pay to stay afloat.
“Allison and I had just bought a small bungalow and moved in together after dating for a few years. Then Covid hit and I got laid off, and then I got sick. I was completely incapacitated. Allison had to take 10 months off work to look after me,” said Des. “For a while we were down to one reduced salary, and even with her medical coverage, we still had to pay $700 a month for prescriptions, plus parking at hospital, and all the other extra things I needed.”
Basically, Des says they learned the hard way that there is no public funding for the average person with an average income who gets sick. “You either need to be totally destitute to qualify, or you need to be extremely rich so you can afford the costs of cancer yourself,” said Des.
Wellspring Lends a Hand
Up until now, Des has had limited concentration and energy for Wellspring programs, but he says he is grateful Wellspring led him to the Alberta Cancer Exercise (ACE) program, which will help him to gradually rebuild his physical strength. Next month he will start taking Wellspring’s Brain Fog program, with hopes of regaining some of his diminished cognition.
“As a person facing cancer there are just so many things outside of medical that you need help with, and Wellspring is the only organization I know of that can help with those things. They do everything they can to help or direct you. If they don’t have a program you need, or the answers you are looking, they will bend over backwards to help you find it,” said Des.
So far, the Wellspring program Des is most grateful for, is Money Matters.
“This program is invaluable. [They] exhausted every possible avenue looking for funding for me, and [they] filled out all the forms – which was such a relief. When you are stressed and exhausted and taking all kinds of medication, you are clueless. Your brain literally fails to function,” said Des. “I couldn’t have looked into any funding, or done any of the paperwork without Wellspring.”
Sadly, Des was not eligible for any financial support, putting added strain on his cancer recovery. [Read a recent report about cancer-related financial toxicity affecting Canadians.]
“Even still, I feel very lucky and grateful. Everyone in my life has been supportive and fantastic,” said Des. “Allison always tries to be so positive. She just wants me to be well and if I can’t work, she says we will just have to change our plan and find a new way forward. For now, I try to do small house chores in the few hours I’m awake, and she just keeps working hard for both of us.”
One Response
So sad to hear nothing has changed in respect to funding for people with cancer. My dad always said it was a good thing he had money because the govt didnt pay for anything you needed for treatment or support. I would think you would at least qualify for cpp disability. You certainly cant work and your ability to do so is not just a few weeks away, it may be several years if ever. Try to find a Dr who will help you fill out the paperwork stating the reality and possibly get you some financial support which you should be entitled to. If you still have brain fog maybe even AISH funding.
Sadly my dad was terminal, he died in 1992, the treatment for his cancer is exactly the same now, nothing has changed. I lost my last 2 dogs to the same form of cancer, their treatment and drugs( chemo) were exactly the same, with the same result.