How did you know it was time to quit your job?

RosesToeses

I know there are several really helpful threads about SSDI and Medicare and the logistics, but I'm hoping for a little feedback on deciding when it's time.

For me, my job is an office job and I worked it through my stage III chemo with 1 or 3 days off every 2 weeks (ACT Chemo) but that had a 16 week end date.  Now I'm facing the end of my Xeloda days and starting up on (I think) Gemzar and Taxol tomorrow.  I have some high grade spread to my lungs and right now I'm coughing all the time and need to limit exertion.  

Part of me thinks I should just see see how it goes, part of me is just stressed out and ready to be done with one more thing when I already feel pretty crappy.

But what happens, especially with SSDI, if the treatment works well and I'm feeling better and not disabled?  I've heard several ladies here have had reviews to see if they're "still" disabled.  And I'm not sure how I'd feel sitting around if I felt fine while my poor husband continued to work every day.

I'd love to hear your thoughts on this!

Strong65

I quit working mainly to get the clock rolling for Medicare, I also had a desk job. I have bone mets. its been almost 3 years and have finally decided I'm getting bored sitting around, I am now working part time and supplementing my SSDI and LTD. I'm glad I made the decision as it gave me plenty of down time to go thru treatment with less stress. Trying to juggle time off for my infusions and bad days, time for our sons activities and needs, as well as work was pretty stressful...

Kandy

For me, it was an easy decision, I was no longer able to do my job. I did have to go through a review that it seemed like they were going to take it away, but in the end they approved it. I think each person must make this decision for their self. Every situation is so different. Sending you lots of prayers to help you decide. Enjoy the moment.

RosesToeses

Thank you, luv2fish, I really appreciate your feedback!  How many hours can you work without effecting your SSDI and was it hard to find a job that would work around your treatments?

I've probably watched 1 too many 48-Hours specials on people who were on disability and going to the gym and stuff--is that something that happens with cancer disability?  If I'm feeling better, I want to walk and garden, etc.; clearly I'm not someone hidden cameras are likely to cover but still!

ETA: Kandy we were posting at the same time, thank you!  My job isn't physical, but lately the time off is starting to add up and I'm getting concerned about getting my stuff done.

Chicagoan

I quit working when I felt like my life was at stake due to difficulty breathing and weakness that was increasing every day. I also knew my performance was declining since my energy was so low. My disability benefits were a pleasant surprise-I had never checked them out b/c I never thought I would be on disability. I am feeling so much better now without the stress of the job I left and also treasure the gift of time I have received to focus on healing and enjoying life. I know it may be difficult to get another full-time job with insurance if I am kicked off of SSDI but that would be a happy problem compared to the alternative.

I do exercise with more and more vigor as my health improves as part of my treatment plan and sometimes wonder if people think I shouldn't be on disability but I am nowhere near where I was even a few years ago. We have Stage 4 cancer-I don't think we need to feel guilty about being on disability. If a cure comes and I feel how I used to, I would gladly return to work.

RosesToeses

Very true about the "happy problem", Chicagoan!  Right now my breathing is rough and my focus is scattered, but boy would it be a good problem to feel well enough that that wasn't the case.  Still, I'm kind of a worrier at heart and I'm having a hard time turning that off.

Zillsnot4me

I left work the day of my surgery. I was a preschool teacher. I didn't want to be too sick and tired of taking care of someone else's kids and not be able to take care of mine.

My first approval for disability went thru quickly. I have been reviewed since. It was no big deal. Just more paperwork. I felt like someone needed to get their numbers up so mine was an easy case to review. It still caused some anxiety.

At times I would love to go back to work and be an adult not just a mommy or cancer patient. I did try volunteering but it wasn't a good fit. I have chemo brain and fatigue. I'm glad to help out at my children's school but it all depends on that day/week.

I'm still trying to conserve my energy to keep up with my primary school kids with after school activities, homework, etc...

It's a big change to stop working. I'm not sorry. I can be off whenever my kids need me without any hassle over snow days, sick days, holidays. We can even play hooky:

Good luck with your decision.

Lynnwood1960

I just went on short term disability from my job in June. I'm a nurse and just could not physically do my job anymore. My onc does not want me lifting or pulling on patients due to my widespread bone mets. I will admit that I feel SO much better physically since I stopped working, pain is much less and when I am tired I can rest. When I worked, I would come home and hit the couch, felt like I was giving the best of myself to my employer rather then my family. The financial aspect scares me but at this point it's one day at a time...more decisions to make at a later dates.

Strong65

I am working at Menards, you can work up to the limit set by SSDI. I am earning about $800 a month. No way could I do FT, even at my old desk job. Just don't have the stamina for it. The most physical part of my job is being on my feet on the cement, I do a 4 hour shift typically. I have neuropathy in both my hands and feet so it can be a little tough. But emotionally and mentally it's great to be out amongst the living instead of sitting at home with the chickens. My son's are 16 and 17 and have started kicking me to the curb...

gramen

Thanks for posting this...same boat here. Went on short term disability July 1st, after finding out about brain Mets. I just couldn't focus at work.

I did work full time 1 year and 4 months after my diagnosis with liver Mets. My employer wasn't the most supportive though. I had to request ADA accommodation to take an afternoon off every now and then to go to treatment/appts. They slowly took me off projects and demoted me to junior tasks, even though I worked my butt off and completed assignments efficently and with good quality.

Like Lynnwood said, more decisions to be made later (short term disability runs out Oct 1) but right now it feels like the right decision even with the financial pinch.

pwilmarth

I decided to stop working because I was more concerned about my psychological quality of life, but stood to gain financially by getting the clock rolling on Medicare. My date of disability is 6/4/2015. You become eligible for Medicare during the 25th month after you started receiving SSDI payments. So you would think that means I should be eligible now, but you don't start receiving benefits until the fifth month after your date of disability, so that means you have to wait until the 30th month after your date of disability. So Dec 2017 will be the month. Because the Republicans are dying to screw the pooch on Medicaid, I'm looking forward to the day I receive my Medicare cards in December.

artistatheart

I just can't do my job effectively anymore. And the great point Lynnwood makes is I don't want to give the best of myself everyday and miss the other passions in my life. Family, art, nature. I want to stop and finally smell the roses. I am very concerned about surrendering our health benefits but really have no choice. I just pray there is a way for me to get them another way. I am excited to focus on feeling better and I guess we will take what comes.....

Jodi040812

I work full time as a computer teacher for grades PK3-6th. I also coach 3 cheer teams at the same school. It is exhausting. I have three daughters who are 13,9 and 4 with activities and homework. I hate coming home and knowing that as soon as I sit down that is it! I would rather be taking care of me during the day either by exercise or resting and being there for my girls. I just need someone to explain all of the disability to me really. If this could be my last year teaching, that would be great. I do know that once you are stage 4, that you are eligible for disabitly. Part of me says keep working to stay normal, but with the wait time for medicare it really would Be better to get that ball rolling. So conflicted

RosesToeses

Thanks everyone, really appreciate all the perspectives and help!  

While I was there for the first new chemo yesterday I talked to my NP (onc is on vacation) and a social worker; Nurse Practitioner basically told me that if I felt it was too much to work and do the treatments that they would support me with that in the paperwork they would need to fill out.  Social worker seemed a bit flakey but she was nice enough to come to me where I was in the infusion bay; I was all Benadryl and Ativan-ed up so it's entirely possible the real flakey one wasn't her  

I need to see if part time might be possible or even advisable from a payment/payroll standpoint.  It would mean my boss would need to bring in someone to help but maybe?  I'm also really daunted by the idea of making notes and teaching someone else (help or replacement) what I do in this job I've had for a decade now. 

Lots to figure out and you viewpoints are so helpful.

Jodi, there are a few threads on the board about SSDI and oftentimes hospitals will also have a point person to help.  I went to ssa.gov to sent up an account (not same as applying, you can just get info if you want) which told me my estimated monthly payment and linked to some brochures.

Lumpie

Posting this to several threads: I wanted to encourage other MBC'ers to share your workplace stories at this new discussion:

MBC and Your Job -- what's your story?

https://community.breastcancer.org/forum/8/topics/...

Interesting thread!