Accept Disability, or not?

embur102 · 09-30-2014, 08:06 AM

Hello everyone,

Do any of you have experience with receiving disability? I was recently awarded disability under the Compassionate Care Allowance, (with Stage 4 brain mets they dont expect you to live a long time) It's a small amount, not enough to live on but it is a guaranteed monthly income. if I accept it, I am then limited to how much income I can bring in each month from employment.

My dilemma is: do I accept the guaranteed amount, and then limit my work hours, or do I turn it down with the belief that I will be one of the long term survivors who is still able to work?

Either way, my income still won't cover all the bills. And, I have no sick pay or vacation, so no work=no pay.

Ladies with mets.....are you still able to work? What has been your experience with long term treatment effects? I am just beginning this mets journey....not sure what to expect.

Thanks!!

annettchen · 09-30-2014, 11:59 AM

I'm also early on, but thought I'd reply anyway for what it's worth.
I have bone mets, went thru 6 cycles of THP and am now on Herceptin and Perjeta, plus Xgeva. I continue to work full time, but am lucky because I started working from the home office prior to my diagnosis in March this year.

So far, I think the impact on work is not big - some more doctors appointments than other people, and for a while I was not able to travel for work, but this is on the way to resolve. I have to say, though, that my boss has been absolutely amazing all thru this - he really tries to work around whatever limitations there are, and this approach has been profitable for both sides so far.

Side effects of Herceptin / Perjeta on their own are WAY less than with the Taxotere. So far just some big D, but easily manageable with occasional Immodium. Some bone and joint pain (but I still go horseback riding 3 times a week, and move as much as I can, as that makes me feel better). Some itch. But really - nothing to write home about.

I intend to continue working as long as I can - not only for financial reasons, but also because it helps me keep my sanity and instills some much needed normalcy into our family life...

Overall I think it depends on the amount of effects or side effects you experience, and also on the type of work... I'm a "pencil pusher", so if I don't function 100%, no one will come to harm from it, and there's not much physical strength needed for what I do...

Adriana Mangus · 09-30-2014, 04:22 PM

Embur, I tend to agree with Annett.

It's basically up to you, how are you feeling? do you feel like you can continue working? You are entitled to attend all of your doctor's appointments, your employer has no choice, but to abide.

I worked until my husband suffered a stroke in 2007. I was dx in 2003 with mets to lung- rt side- and continue working with minimum side effects and I really enjoyed work, it gave me a purpose in life. I believe I'd continue working if not for my husband's disability.

My doctor isn't concerned at all with brain mets, people like you can live for a long, long time; 10-20 years - -who knows. You seem real young, maybe disability can wait for awhile?

Best of all to you and your family.

Addie

Saygoon · 09-30-2014, 09:54 PM

I had to weigh the pros and cons when it came to disability. For me it was worth it but I live in South Dakota and I there are alot of other programs that are available for those on disability to help pay bills etc. You might want to check and see what is available in your state as well. Plus you don't have to stay on disability. Social Security has a program designed to let you work and eventually get off disability. Check their website and also call your local Employment office. I guess the bottom line is - you have options. As others have said it depends on how you feel as well. No I dont have as much money but I do have alot more time for family etc and pursuing other interest. Keep the faith girl - you may live a long wonderful life!

yanyan · 10-01-2014, 09:38 AM

I stopped working last September after being on chemo for 3 years straight. I have a young kid and spending more time with her is important to me. I purchased a long term disability insurance through work after I was diagnosed which covers 70% of my previous income. If you can, I would suggest purchasing an insurance policy of such. So when you decide to stop working , this is very helpful. Another thing to consider is your medical insurance. After being on social security disability, you will qualify for Medicare.

Jackie07 · 10-05-2014, 02:36 PM

I believe you can still work while drawing disability as long as the amount of income does not exceed certain limit.

I worked continuously for nearly 20 years after my first brain (tumor) surgery and 7 years after the 2nd brain surgery/4 years after the first breast cancer diagnosis/treatment and was working during the 2nd breast cancer treatment.

I finally called it quit in 2009 - not because I wanted to quit, but because I kept being let go. I figured the emotional damage is just not worth it even though accepting my own disability (mainly in the short-term memory region and easy fatigue ability) was a tougher hurdle for myself.

Ceesun · 10-05-2014, 05:26 PM

I was a teacher and worked for two years (after stage 4) and did some of my best work while on xeloda and tykerb. My kids were grown and I was tired after work. But I did it. After I had to have a mastectomy ( same breast as lumpectomy) I decided it was time to end my teaching career and retired. I had 31 years of teaching so I qualified. Did not know then I could qualify for SS..applied in 2011 and received one year retro and get my monthly check now. My vote would be to do it and as Jackie said you can still work, but I don't know what the formula is....best wishes to you. Cathy