How did Canadians with Stage IV navigate work and disability?

Sadiesservant · July 2020

Hi Everyone,

I'm reaching out to my fellow stage IV Canadians to understand how folks have managed work and if they chose to quit or reduce hours, how they initiated the process. I'm three and a half years into my stage IV diagnosis and have continued to work full time throughout (with the exception of the first couple of months after receiving my diagnosis). While, for the most part, I like my job, enjoy working and think it is best to stay active, I struggle with finding balance. I have spent the last couple of years in particular wondering if I should step back (perhaps to part time). Now, with COVID-19, I'm working more hours than ever in a management role that tends to be high stress. I have excellent benefits so do have access to long term disability which would carry me through to retirement if I am fortunate enough to get to that place (I'm 58 so a ways to go).

The challenge for me is that my MO, while marvelous, clearly leans towards having his patients live as normal a life as possible, which includes work. At my first appointment after the stage IV diagnosis one of his first comments was "We need to get you back to work". And, as far as he is concerned I'm doing great. I must admit that overall I am doing very well, currently on Faslodex/Verzenio. Not to say I don't have some issues including hip/back pain, neck issues including some facial numbness (may be due to bone mets or might be degenerative spinal changes) and the SEs from Verzenio. But I find I have little time for self care, have memory issues and feel exhausted as I lurch from one vacation to another. Financially, I don't want to voluntarily reduce hours on my own as that will impact any future long term disability and reduce my pension contribution. It makes no sense, particularly given that I am single so need to make sound financial decisions. It seems to me I need my MO to make the call but maybe I am overthinking this.

My question, if you chose to scale back or stop work, how did you go about it? Did you make the decision or did your doctor advise you to reduce work? Where were you at in terms of your symptoms at the time? Were you at a point that you simply couldn't do the job or, like me, were you just finding it too much? Did any of you experience issues trying to step back?

Any thoughts would be welcome and much appreciated. I've read through the SS thread already but the rules/supports are so different between the US and Canada that it didn't really help.

Thanks!

Sadiesservant · July 2020

Bumping this in the hopes that someone chimes in.

MissMonty · July 2020

Hi Sadiesservant,

I decided to take leave about a year and a half into my diagnosis. It was a very high pressure sales manager job, and although physically able, it was a pretty stressful job.

I was on short term initially and then moved to LTD after filling out the required paperwork. It was approved almost immediately. My MO has had to provide additional supporting information, only once since I’ve been off.

I am happy with my decision. With Covid, I have been at loose ends from time to time, but overall I keep myself busy.

My companies insurance provider is Sunlife and Cigna administers my LTD payments.

Anna

PS...I’m originally from BC. Have only been in Toronto for 4 years.

Sadiesservant · July 2020

Thanks Miss Monty. Did your MO push back at all? I find I struggle with the process as, in my mind, it should be a doctor say "she needs to work less" rather than me saying enough... As I said, likely over thinking this...

MissMonty · July 2020

My MO didn’t push back at all. He supports whatever decision his Stage IV make. Once you make the decision I’m sure your MO will fill out the necessary forms accordingly.

See how things go on STD and if you’re bored out of your mind, you can always go back??

I still “overthink” it. I wonder what people think when they find out I’m not working, because I look totally healthy. But I get over it and I recall this saying. Nobody on their death bed says “ I wish I worked more.”

Sadiesservant · July 2020

Thanks. This is helpful to hear. Your comment about folks wondering about you not working really resonates. I think this is the crux of the issue - not worried about what the average person thinks but for some reason I worry about my work colleagues/superiors and, oddly enough, my MO. Many of those closer to me think I’m nuts and should have stepped back ages ago.

Sary · July 2020

I have struggled with this topic since my MBC diagnosis over 4 years ago. I decided to work full time mostly because I didn't know what else to do and enjoyed the challenge of work and friendships from working at the same place for a long time. I think it was the right decision for me. In January of this year I decided to reduce my hours down to 3 days a week after a few scans with progression. I was fortunate to have very accommodating managers. I wasn't ready to walk away completely but realized I needed to take time and enjoy and also reduce stress. Again I think it was the right decision for me. It especially kept me sane through the quarantine. It was semi-effective in reducing stress as I still felt the responsibility of a full time role (that's one caution .. work load needs to decrease with hours!). I recently received some more bad news so it was clear it was time to walk away completely. Since I had scaled back gradually it was not too hard to do.

My MO has encouraged me to do whatever I want and the disability co (also Sun Life) approved my claim instantly. The best advice I was given was to make the decision that felt right at the time and not pull the trigger on anything before I was ready. I think I struggled with the same point as you both of not looking or feeling particularly sick for the first few years.

MissMonty · July 2020

Hi Sary,

I’m sorry about yourbad news of progression. I hope you’re managing as well as you can be.

Anna

Sadiesservant · July 2020

Hi Sary,

I too am sorry to hear about your progression. I progressed early on despite the fact that I am expected to have a good run given the long period between my initial diagnosis and stage IV. I’ve been stable since late 2017 but it rattled me and has added to my angst around when to step away. I don’t want to wait until I am too sick to enjoy the time I have!

I also don’t regret continuing to work over the last few years. When I found out I was stage IV I did take time off, thinking well, that’s it if I’m honest. Once I found out that it wasn’t quite that imminent And the fluid in my lung was under control I quickly wanted to get back to work. I didn’t know what todo with myself. But now I find the pace is a bit too much particularly as I am also single with a big house, garden and am the sole support for my 89 year old mom. As it happens, I too am thinking a reduction to three days a week might be the ticket. (And yes, I need to ensure that I am not just reducing my hours on paper, a significant risk in my role. Originally I thought reduced hours each day would be best but I can see trouble sticking with that!)

Interesting that all three of us had it return to our lungs initially. Sary, I was also 38 at diagnosis but was fortunate to beat it back for many years.

Wishing you both well. Thanks for responding. Your comments are very helpful as I grapple with a decision as to my next steps.

Pat

moth · July 2020

I was going to just lurk (to see if I'm missing any govt benefits I could get but i dont think I am as our houehold income is too high)

I wasn't working when dx, I was 1/2 way through a full time year round 36 mos bachelors of nursing program. My MO asked me to withdraw from school at our first appointment. I guess theoretically if my condition improved as miraculously as a few peoples' did in the prev phase of my clinical trial I could go back eventually but would/should I? The original plan was predicated on working to 66, but was also based on assumption I'd live healthily till 86+. Now I'm thinking Freedom 55 was a damn good retirement slogan.

Fwiw, I think you're giving your MO too much weight in this decision. I'd consider: Is your work the most important thing in your life, inextricably linked with your sense of self and your identity? Do you want to work possibly right to the grave? Are there other things you want to do? What do YOU want, not others, not based on how you look or what others think.

Just a reminder too that if your benefits contributions were structured with after tax income, then your LTD (standard 60%) is income tax free. Honestly, it's such a huge jackpot to have a good LTD plan and I'd take the $ and run away to live the rest of my life.

moth · July 2020

RBG otoh has a reason to stay on so she's gonna hang on

Sadiesservant · July 2020

Thanks Moth. Yes, LTD is a jackpot. I know I’m very fortunate although in my case it will not be tax free. I do need to be cautious given I am single and will need to ensure I can cover my expenses, particularly given that my health benefits will be reduced somewhat on LTD and then significantly if I make it to 65. It has also been nice having a full income - I don’t worry about spending money on things I want now!

The working to the grave question made me chuckle. That’s been an overriding concern for me. I like work, like my job most of the time and have been happy to carry on while I am doing well. However, things can change fast for us and i will be supremely pissed if things suddenly go sideways and I have spent all my “good days” working my bit off!

Really appreciate your comments. It’s hugely beneficial and somewhat surprising to me how someone who is normally so assertive and decisive can be so tied up in knots about this. 🙄

MissMonty · November 2020

Hi,

Hoping to bump this thread for another insurance related question. I have been off on LTD for almost 2 years, and my company’s extended health plan contract states that after an employee has been on LTD for two years, they will no longer be eligible for extended health. (Dental, prescriptions, etc.) I appealed to my company....(a huge multinational organization, that made 27 Billion in profit last year, but I digress) for flexibility to stay on the plan. I have been paying my own premiums since the outset of my LTD leave. They said NOPE!! Human Resources offered me a few options to bridge my current plan, which really won’t be helpful from a drug reimbursement perspective. The best plan (without a medical questionnaire) will cover 80% of an annual limit of $2000. For those who know, they will know this won’t cover much.

Anyways, I just wondering if anyone else has been in this situation, and if so, were you successful in getting your extended health benefits extended past any expiration date?

My MO has advised that my province does have a drug reimbursement program (Trillium) and Kisqali has just been added to the approved list of drugs. This will be Plan B, which I do think is looking more likely. I don’t know much about this program, so I hope it’s a good option, should my company say “no” again. I’m not even sure it’s worth trying to have them reconsider their initial decline, hence this post.

And advice, feedback would be great.

Thanks,

Anna

Sadiesservant · November 2020

Wow Anna,

I'm so sorry to hear this. I'm fortunate in that I am covered as long as I am on LTD (although they may ultimately scale back the gold plated plan I signed up for before being diagnosed as stage IV) but once I turn 65 I shift to being retired and the retiree plan is pretty abysmal.

I think drug coverage is a huge issue in Canada. For those of us with company plans, we go merrily on our way thinking we're in good shape. And we're lulled into a sense of false security that our Canadian health care system is there to support us for the big things. Uh... no.. So far in my journey as stage IV I have been on Ibrance ($6500 per month covered by my plan), Faslodex ($1300 per month also covered - that's $650 per cheek) and Verzenio (not covered by our either the provincial or health plan but thankfully I was able to access it through the pharmaceutical company's compassionate access program - Assume it would be in the same cost range as Ibrance). Who can afford that?

I had a chat with my MO awhile back and told him I was going to need a strategy if there are so many treatments not covered. He assured me that this was it, the rest are covered under our provincial plan. Let's hope so as I hopefully have quite a few treatments ahead.

I hope you are able to sort it out with either your company (although it doesn't sound promising) or Trillium.

Wishing you all the best.

MissMonty · November 2020

Thanks Sadiesservant,

I agree! We do need a better system for people without company insurance plans. I would be more than happy to pay, and pay well, for a private plan, however cancer makes me uninsurable. Just frustrating, and I think I’m getting even more frustrated anticipating all the red tape I expect I have in front of me, trying to get coverage. Maybe it won’t be that bad. I am thankful though for the overall access we have in Canada to health care, ongoing imaging, etc. This will really the the first time since my diagnosis in 2017 there has been any type of blip. My care has been top notch. My company is just cheap. Lol

Novartis will likely cover the drug, as this is how I initially received it, waiting for my insurance company to approve it. I am doing quite well on the combo. So well that I could be in one of their commercials.

I have been thinking of a way to advocate for Stage IV cancer patients. Being an outward advocate is not a natural instinct for me, but being a pain in the ass is. Maybe this will be my purpose.

I hope all is well in BC, and that Verzenio is working, with manageable side effects.

Take care!

NewGardener · December 2020

Sadies' servant - I missed this thread when you first started it. I made my decision to leave work 10 years ago, after working with MBC for a year. Work was demanding without really any chance of reducing hours, and was really uncertain (investment banks like to fire people - and my instincts paid off, 3 years later they left Canada and fired everyone, but I digress). I did the math on how long my savings would last and applied for LTD. My family doctor actually did the forms for me and she was supportive of the decision. Working full time meant there was a lot of self care I couldn't do (like sleep, exercise, not eat take out). My job was really satisfying, which I miss, but it turns out there's lots to do outside work. And having time has allowed me to pursue clinical trials etc. And honestly, each progression for me has meant a decline in my capacity. Good luck as you sort out your next steps. A social worker at BCCA might be able to help with the discussions with your MO about your quality of life and why you need a break.

MissMonty - yes, when my firm left Canada I lost my extended benefits that I kept while initially on LTD, and the "Followme" type programs for individuals are, as you noted, very bad with actually insuring drug costs. While he was employed, my husband's insurance covered me (now he's a consultant). I had the good fortune of living in Calgary while I was on some of oral cancer drugs - the Prairies do cover them unlike Ontario. If you are interested in advocating for Canadians with MBC, both Rethink Breast Cancer and Canadian Breast Cancer Network have some active campaigns (we need all the help we can get!).

Sadiesservant · February 2021

NewGardener, thanks for the response but sorry for my late acknowledgment. In reading your message, you’ve given me some things to think about. To be honest, until today I thought I had made progress. In October my MO prepared the paperwork for me to go down to four shorter days per week. While the short days were still a work in progress, the extra day off has been a godsend. I felt I was finally able to get a bit of balance.

Well, unfortunately it was a bit too easy. The system where I work calls for six months of short term illness and then you have to switch to long term disability. While the system allows for part time, it is really designed as gradual return to work rather than slowly reducing your employment. I had a call with the LTD specialist today as I am at the halfway point and need to apply for LTD but had some questions. One concern I had was what happens when my capacities gradually diminish as one would expect. The good news is that the plan will adjust, working out my leave allowance on a biweekly basis. Great. The bad news is that once I am on LTD I receive zero special leave (like for appointments, family issues, etc) and no vacation. They will provide vacation pay, I assume on the hours actually worked, but this represents a huge loss in vacation days at my level and years of experience.

This has me ready to hit the pause button to go back full time despite the fact that I am likely facing progression. It’s not that I expect a hand out but I had based me decision on reducing my hours only marginally on still having my vacation, albeit at a prorated amount. It makes no sense for me to only reduce hours a bit to then wear myself to a frazzle with no restorative breaks. And so much for the bucket list once COVID ends. Frustrating to say the least....

Thanks again for your response.

How did Canadians with Stage IV navigate work and disability?

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