Return to work or disability

Now that my husband is out a ways and recovering we are discovering how hard it is for him to get back to work. How does anyone do it? For him, the fatigue is pretty severe and we're still transitioning to solid foods, so getting adequate nutrtion and hydration takes a lot of time during our day. He is considering early retirement. I've heard that he could get on disability, but my only question is what about insurance? I know that we'd be going into one of the health exchange plans once he retires.  

I've read that once you get on disability there's a two year wait for Medicare. What do people do in the meantime? COBRA is way too expensive. I'm looking for work, but it's hard for me to get decent pay and benefits in the job market where we live. 

How do most people do this?

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    I don't think getting on

    disability takes 2 years if a person is suffering from cancer treatment.  Head and neck cancer is on the list of quicker paying disabilities.  I'm sure someone here has done it.

    I went back to work 6 weeks after treatment, and I was very fatigued.  Treatment ended the end of August, and I started coming back to my regular self about March....Food was still iffy and I was using my tube...plus I had to have water everywhere I went.  I worked a desk job...night shift....but it could be very stressful.  One thing it did do was put my life back into a normalicy, and I had to think of things other than cancer.  That was a plus.  I didn't come all the way back until the next June, tho.

    p

  • kdot2003
    kdot2003 Member Posts: 143
    I finished TX Dec 15 and I am

    I finished TX Dec 15 and I am already worrying about my job.  How in the world can I run around being a nurse for 12 hours.  I'm a L&D nurse.  What else would I do.  I already had Thyroid Cancer and that left me tired even treated.  I want to work.  I am only 49.

  • wmc
    wmc Member Posts: 1,804
    Yes it can make you worry.

    I had my larynx removed and neck dissection on both sides, but didn't have Chemo or Radiation. I also am stage 3 COPD and have both conditions, emphysema and bronchitis. I do have a prosthesis in my throat so I can talk and went back in 10 weeks. I did good but my emphysema got worse so my doctor took me out on disability, and I can't go back to work. I was lucky in that I was 62 at the time. I also had a great company to work for. I thought I had to retire, but was told by my company. I was to go out on short term Disability [6 months] then I will be swithced to long term which is 24 months. By doing that I stay on the books and under their insurance, and I only pay the same as when I worked and they pay for all my benefits, life, vission, dental, and medical.

    Some of the H&N cancers can go out on disability and to the front of the line in a way. Where is is and if you have chemo and radiation does matter. Cobra is expensive and you have to really watch out on "Obama" care as it costs a lot and does very little. You can go online and check Social Security and see how much it will pay. If you have enough hours to qualify, and what you would get monthly [which is close to what full age retirement is. Now you need to understand that the "Two" year wait is from when you were first, disabled with a max of 12 months back +5 months wait for dissability. Which means if you were first taken off work over more than a year ago, they count that time so the wait might be only one year. Not much but it could help as you can be long term disabled from work for 24 months and SSDI will count that time. It is very complated but it can shorten the wait. Not sure if this will even help. You can sometimes get insurance less than cobra, but watch out for the deductables. My Son had what they called insurance through work, but it had a $7500 deductable then it only would pay 60% when it was met.

    I hope someone that is younger like in there 40's and 50's might have some help.

    Bill

  • lornal
    lornal Member Posts: 428

    I had H&N cancer twice.  First time was tonsil cancer in 2007 (I was 45).  I had surgery, chemo and rads.  My company has short term and long term disability.  I was on both.  For LTD, I had to sign up for soc sec disability.  Was on it for a month before I went back to work full time.  For about a year - work, eat, and sleep was all I could handle. 

    2 years after I got onto soc sec disability, I was placed on medicare A & B.  I declined, as I had insurance through work - what I didn't know - is that I was still on A this whole time...  And then, in 2012, my work insurance company decided that I HAD to sign up for B else they wouldn't cover me except for 20%.  So I signed up (I will be on through Oct of this year).

    My 2nd cancer in 2014 (I was 51) I had a total laryngectomy w/ reconstruction of my esophagus.  No chemo or rads.  Working for same company, I was on short term disability and long term disability again.  However, I was able to get back to work part time after 2 months.  And, to this day, I only work parttime -  24 hours a week.  3 8-hour days.  The LTD and STD contracts allow part-time work - up to 80%.  After almost 2 years - I have not been able to increase my time working.  I have tried on several occasions, and it just breaks me.  9.5 hours one day - shot the rest of my week.  4 hours one day on a day I usually don't work anymore - ruined the rest of my week.  If I go beyond the 8 hours or 3 days (M-T-TH - no more than 2 contiguous), my company won't get what they are paying me for, I make mistakes, and I just don't feel well and takes longer to recover).  Because I am on disability status - my company continues to cover my health insurance.  They have cut back on my personal on vacationt time - which is only fair.

    Look into what your company has for disability.  Maybe they can work with you to cut your hours and still keep your insurance.  With my company, it helps that it is small (30 people), and I have been there 25+ years).  Your's might suprise you and work with you.

     

    Lorna 2007 & 2014

  • the_wife
    the_wife Member Posts: 184
    lornal said:

    I had H&N cancer twice.  First time was tonsil cancer in 2007 (I was 45).  I had surgery, chemo and rads.  My company has short term and long term disability.  I was on both.  For LTD, I had to sign up for soc sec disability.  Was on it for a month before I went back to work full time.  For about a year - work, eat, and sleep was all I could handle. 

    2 years after I got onto soc sec disability, I was placed on medicare A & B.  I declined, as I had insurance through work - what I didn't know - is that I was still on A this whole time...  And then, in 2012, my work insurance company decided that I HAD to sign up for B else they wouldn't cover me except for 20%.  So I signed up (I will be on through Oct of this year).

    My 2nd cancer in 2014 (I was 51) I had a total laryngectomy w/ reconstruction of my esophagus.  No chemo or rads.  Working for same company, I was on short term disability and long term disability again.  However, I was able to get back to work part time after 2 months.  And, to this day, I only work parttime -  24 hours a week.  3 8-hour days.  The LTD and STD contracts allow part-time work - up to 80%.  After almost 2 years - I have not been able to increase my time working.  I have tried on several occasions, and it just breaks me.  9.5 hours one day - shot the rest of my week.  4 hours one day on a day I usually don't work anymore - ruined the rest of my week.  If I go beyond the 8 hours or 3 days (M-T-TH - no more than 2 contiguous), my company won't get what they are paying me for, I make mistakes, and I just don't feel well and takes longer to recover).  Because I am on disability status - my company continues to cover my health insurance.  They have cut back on my personal on vacationt time - which is only fair.

    Look into what your company has for disability.  Maybe they can work with you to cut your hours and still keep your insurance.  With my company, it helps that it is small (30 people), and I have been there 25+ years).  Your's might suprise you and work with you.

     

    Lorna 2007 & 2014

    Thank you everyone for your

    Thank you everyone for your input. I really appreciate it! 

    This is all very overwhelming - the uncertainty and the not knowing keeps me up at night. But the good thing is that his employer seems willing to work with him on a flexible schedule, so I think he'll just continue to do part time for now and see how it goes. I'm hoping he gets his strength back before too long. I just hate to see him go through this. You guys have all been through the ringer - having such major surgeries and then having to go through it twice. I can't imagine what that's like.

    Lots of inspiring folks here!

     

  • wmc
    wmc Member Posts: 1,804
    the_wife said:

    Thank you everyone for your

    Thank you everyone for your input. I really appreciate it! 

    This is all very overwhelming - the uncertainty and the not knowing keeps me up at night. But the good thing is that his employer seems willing to work with him on a flexible schedule, so I think he'll just continue to do part time for now and see how it goes. I'm hoping he gets his strength back before too long. I just hate to see him go through this. You guys have all been through the ringer - having such major surgeries and then having to go through it twice. I can't imagine what that's like.

    Lots of inspiring folks here!

     

    Just one day at a time...........

    Then, it's one foot in front in front of the other.  I feel many, especially men, try to go beck to work a bit early. It is something I needed to do. I needed to prove just for me, that I could do it and this was not going to beat me. Like I said it was just for me, as when I lost my voice it was major to lose your voice. Yes I can still talk and 98%  95% lets go with 80% of the time I do just fine. It is my "New" voice, but in my mind it isn't and never will be "my" voice. Maybe it is pride or just plain silly, but when they cut my larynx, they took part of me as well. In a way it is like loosing some of "your manhood" was cut as well. This is something that I am remined of every day, as I lift something, to even simple things like mowing the yard. My son has offered to do it or just help. I seem to always to turn it down, and know I should take him up on it, but my pride won't let me. As my COPD progressis I loose more small things that I could do. Like today, I don't know why I feel tired and week, but I do. This does not happen ofted but I have been on oxygen for the last 4 hours. 

    So, just one day at a time, and one foot in front of the other,and don't let pride get in you way.

    Bill

  • NelsonOng
    NelsonOng Member Posts: 47
    Glad your hubby gets flexibility hours

    Yes indeed its tough getting back to work after treatment as I believe ALL will be fighting with fatigue. I can recalled mine As well.  For the first 2 weeks, I just kept on sleeping and eating, though mouth was dry and food sucks due to lost of taste buds.  I finished my treatment in May 2013 (left mandibular tumour) and I was extremely fed up of the fatigue that I'm encountering. I decided on my running hobby and started to exercise. Start slow n just add on a little time to time. Im glad i did as my energy level slowly claws back.  Today I have finished 3 marathons and am running 6 times a week, minimum 10km per session.  My energy level has came back even stronger. All this was done with determination and I'm really happy to get my butt out of that fatigue zone.  Also try getting some old ginger n boil them and drink.  It certainly helps.  Find out more about Origin Point Medicine Or some may call it Origin Point Therapy By Dr Chang.

    Hope your hubby can get back his energy level soon. Hugs and positive prayers sent.

  • the_wife
    the_wife Member Posts: 184
    Yes, determination is a big

    Yes, determination is a big part of getting well, isn't it? You guys are really an inspiration. My hubby really wants to get back into the routine despite the fatigue and other roadblocks. Although he's constantly surprised by how much he can't do compared to "before", he doesn't want to give in to the fatigue. I'm not ready to throw in the towel either, although we are both close to retirement, we're not ready to go yet. It's not just about the jobs. Sure - we need to work to keep the money rolling in and pay the bills, but we also have to work at overcoming, getting well and staying healthy as survivors and caregivers. I love hearing your success stories and how others have done it. It really helps - thanks for sharing!

  • Hondo
    Hondo Member Posts: 6,636 Member
    Call American Cancer Society

    Contact the American Cancer Society , you can get their phone number or just do it through CSN. They can give you a lot of help. You are correct he will be able to get Medicare 2 years from the date he went on disability, I have the same problem and just hope & pray I don’t get sick in the meantime.

     

    Will be keeping you both in my prayers

    Tim

  • hwt
    hwt Member Posts: 2,328 Member
    Hondo said:

    Call American Cancer Society

    Contact the American Cancer Society , you can get their phone number or just do it through CSN. They can give you a lot of help. You are correct he will be able to get Medicare 2 years from the date he went on disability, I have the same problem and just hope & pray I don’t get sick in the meantime.

     

    Will be keeping you both in my prayers

    Tim

    Mixed emotions

    Getting back to work helped in my recovery and I was happy at the time. Now that I have actually retired, I regret not having done it sooner. Only because i have since lost my sister, my Mom and my hiusband and i would give anything to have spent more time with them.

  • the_wife
    the_wife Member Posts: 184
    hwt said:

    Mixed emotions

    Getting back to work helped in my recovery and I was happy at the time. Now that I have actually retired, I regret not having done it sooner. Only because i have since lost my sister, my Mom and my hiusband and i would give anything to have spent more time with them.

    You just never know

    hwt, I'm so sorry for your loss. That must have been so hard. I'd be lost wtihout my hubby, mom, and siblings.

    It's always too soon to lose someone we love. The trouble with life is that we always think there's time. What we learn from cancer is that nothing is guaranteed and time is precious.

    You did the best you could at the time and so do we all.

    HUGS!

  • Heather_Lynn
    Heather_Lynn Member Posts: 7
    kdot2003 said:

    I finished TX Dec 15 and I am

    I finished TX Dec 15 and I am already worrying about my job.  How in the world can I run around being a nurse for 12 hours.  I'm a L&D nurse.  What else would I do.  I already had Thyroid Cancer and that left me tired even treated.  I want to work.  I am only 49.

    Hi!  I am still getting

    Hi!  I am still getting treatment-surgery is done and radiation will begin next week.  I am also a nurse, although I left the NICU 12 years ago and switched to an office job dealing with Quality Improvement/Public Reporting and electronic health records, healthcare intelligence we call it.  I understand your concerns though about going back to the hospital, but there are other jobs as a nurse that you could switch to if you find L&D is too demanding after you have more time to recover.  Can you ask about starting with 4 hour shifts (covering gaps between 8 hour and 12 hour staff), and then 8 hour, to help ease into it and build up your strength and endurance again?  Maybe space out your days so you don't work more than one or two in a row at first?  I am lucky my employer is very accomodating, and I can work from home if I am not feeling up to being in the office even before I was diagnoses with ENB.  I know you don't have that option in your current role-but perhaps they would have a different role you could fill for a period of time?  Something to consider.  I hope you are able to find an option that will let you return to work but that doesn't push you too much too fast-make sure you keep your health as your priority as well as the need to work.

  • chriscoxx
    chriscoxx Member Posts: 3 Member
    Work/SSDI/Insurance

    Hello there,

    In my experience and from what I have learned,  disability can have an advantage (as long as you have a historical paying job that has paid into YOUR fund :) ) over worrying about going back to work earlier than your body wants you too.  I want to go back to work so badly that 4 walls are breaking me down and cabin fever is running through me.  Without disclosing everything not needed, I can tell you that my SSDI is equal to working for almost $15 an hour based on 160 work hours a month. Increased a little because it is tax free and you don't pay taxes at the end of the year. That's a rough 20-23% pay increase on the payout side of it. I have 2 stage 4 metastatic cancers and going back to work is not on my list indefinitely although there are programs to work to get out of the house and be somewhat productive for those with pride issues, including myself.  

    My Cobra insurance was going to be $660 a month (that's crazy!!!) as I was only paying $43 bi-weekly through my employer. Once I had exhausted short term benefits my SSDI had kicked in and that payout was greater than long term benefits and it was decided I could not return to work a month later and FMLA ran out so my employer had no obligations left for me and terminated me.  Luckily, that was last December and in January I went to private insurance (while waiting for Medicare to come available) and through the state program my insurance premium is matched (because of the disability) by the state 50/50. So, in all I will share my insurance is $127 a month with a better deductible plan than  my employer had and I really am not paying much more ( a little) and what I am I have exchanged for a lower deductible. 

    I have only been out of treatment since Christmas Eve. 35 radiation treatments, 4 rounds of chemo (7 weeks per round) so I am still in recovery mode and searching for options to work that will allow me to make additional income. All I know about that is that the limits are that you cannot make more than $810 (gross) a month and you have to register with the Ticket to Work program or your SSDI benefits will be reduced or suddenly taken away from you.

    My point to this all is that there are ways to improve your financial securities and options available for those who can't sit still. There are just ways to go about making it happen so you can have a little better peace of mind, be productive and recover specifically to your case. Wish you all well.

  • rcaulder
    rcaulder Member Posts: 70
    Work

    I worked all the way through treatment. My treatment included 35 radiation treatments and 7 Erbitux for stage 4 tonsil cancer. Treatment ended this past July.  I missed a total of 70 hours. We are all different. I just choose not to allow this disease to debilitate me.   

  • Barbaraek
    Barbaraek Member Posts: 626
    rcaulder said:

    Work

    I worked all the way through treatment. My treatment included 35 radiation treatments and 7 Erbitux for stage 4 tonsil cancer. Treatment ended this past July.  I missed a total of 70 hours. We are all different. I just choose not to allow this disease to debilitate me.   

    Not one of us would choose

    to let this disease be debilitating. It is more complex than a "mind over matter" equation. As you said we are all different, and our bodies respond to treatment in different ways. My husband also worked through much of his treatment and missed time when he had to be hospitalized for neutropenia, twice. He battles fatigue everyday now that he is 6 months out - due in part to the fact that dry mouth and secondary side effects prevent him from sleeping well. We are hoping things improve with time.

    Barbara

  • the_wife
    the_wife Member Posts: 184
    Barbaraek said:

    Not one of us would choose

    to let this disease be debilitating. It is more complex than a "mind over matter" equation. As you said we are all different, and our bodies respond to treatment in different ways. My husband also worked through much of his treatment and missed time when he had to be hospitalized for neutropenia, twice. He battles fatigue everyday now that he is 6 months out - due in part to the fact that dry mouth and secondary side effects prevent him from sleeping well. We are hoping things improve with time.

    Barbara

    Thank you for all your

    Thank you for all your comments. It's interesting to hear what others are doing. Actually, filing for disability wouldn't make sense right now as he is very close to retirement, so we are exploring all our options. Insurance is the biggest factor as it is for most of us. I've never followed politics more closely than I have this year! Thankfully, my hubby is progressing in his recovery and on the home stretch for the most part. If worse comes to worse, he'll bite the bullet and take early retirement.