Disability

I have been on diaibility since my surgery in November. There is no way I coulld go back to work. I just don't have the energy for a full time job. I am 59 and feel that I will probably be on disability for quite awhile and maybe I will never go back to work, but would like to volunteer work at some point and give back to the world. Evelyn, I thought that you and I were close to the same age. Not sure, but I am impressed you are already working full time. Is there anyone else on disability and if so how long was it before you went back to work. I was in Pharmaceutical sales and getting in and out of the car in this Arizona heat is a killer, plus hauling around samples. Just can't do it right now. [ plus no one wants to hire an OLDER female Rep LOL]

Payson

Hi Payson:

As of June 19, I will be 48 years old. I am at work full time but it really does wear me out by the end of the week. This is a real tuff operation and everyone I know and my doctors are amazed at my recovery. I've always been one to fight hard and I love to work. I've worked 14-16 hour days for a majority of my life, but the last 7 I've reduced my hours to just 8-9 a day and now 8 or less. I do not do alot of the physical work I did previous to my dx and operation and don't think I ever could, but I am very lucky to have the support of my employer and she lets me rest when I need to and is very understanding. Some mornings I have to push myself to get out of bed and go to work, but I manage to do it with encouragement from my hubby who pushes me along also. I know if I could I would rather retire now but I can't so I do what I have to. Returning to work after this operation is not for everyone and you have to do what is best for you, only you can decide what is best in your situation. 

Take Care and Be Positive

Evelyn

Wow Evelyn, I have 10 + Years on you. Your still very young. Glad to hear you have a boss that is understanding. Keep up the positive outlook on life!

Payson

Husband has been out much of the time since his Ivor-Lewis. He was a locksmith and in spite of his age (53 now), he was never able to get back up to speed with work. He tried off and on, and was able to pick through the work that came our way and just do the easy, lighter work. He was sporadic at best, and could only do an hour or two at a time, had a really hard time in the heat in the summer (Arizona would be challenging for sure), had a hard time hauling tools up and down stairs, needed to eat frequently. We sold what was left of our business last fall after almost 3 years of trying to keep going. Our nephew is quite busy running it, and we do not have to turn away endless amounts of work. He was never able to work enough to make it an issue with the disability people, but it's hard to let go of work at such a young age. The 3-1/2 years since his stage 4 dx has been a roller coaster ride of treatments, surgeries, recoveries, remissions and recurrences. Don't think we thought about any of the work issues for a while since it was just about surviving so much of the time.

He took the hospice volunteer course and will be doing some volunteer work with them when he is done with his current treatment regimen, and he putters around the house and yard. There are definitely lots of volunteer opportunities so people can find an organization that fits their interests and still have something meaningful to put their energy into since they may not be able to keep up with their old pace. We feel like we have had a very positive outcome, in spite of his inability to do everything he used to do. You do heal more over time too, so you may find in time you are able to do more. 

 Payson:

 I would be an understanding boss if my employee put in 14-16 hour days! I cant believe the amount of time at work! I hope you were "on the clock" at least! That is murder on a healthy person, much less someone with carcinoid. 

I worked 7 years, through 3 surgeries, 2 experimental treatments from 02---08.I only took company time when I had my first surgery and they were looking for the primary- 2 months. Otherwise, I took vacation time.

There did come a time however,, that I was running as hard as I could at work and calling vbehind. Whether I was missing meetings or on phone to insurance., MD,. hospitals, lawyers, etc. I realized my memory was failing me and the stress and accumulated wear and tear on my body with the surgeries and drugs got me to a point I needed to file for disability or risk being put in a position where ,y problem becomes a "performance problem" which is what  you dont want in a large company that rates its employees every year and looks very hard at those on the bottom yearly. Disability helps to protect you on that front. However, everyone knows their situation and circumstances and company they work for. I think the key is to know when your body is telling you to "take a break, NO MAS" . It was very difficult  for me after being with same company since 82! Non working spouse had a harder time with it. But I did it and have never looked back and like another member wrote, I dont think I have the staimina, mental capability (I used to be a finance manager) and endurance to make it....its all I can go to makeit through the day with my very advanced disease.

BTW, ii just started PRRT treatment in Germany as my last hope and chance for buying time. If interested in this treatment, I have a lot of info on my blog at 

 http://renalcarcinoid.blogspot.com/

Start on May 14 through today. May 28 Friday has a video of the treatment. Very imformative and a good 1 hour investment in case you needed this in the future. Too early to tell anything in my case. . Also, my second blog entry describes my disease in detail. Thanks!

Take care

On 6/5/2009 payson[georgi] wrote:

Wow Evelyn, I have 10 + Years on you. Your still very young. Glad to hear you have a boss that is understanding. Keep up the positive outlook on life!

Payson

On 6/5/2009 payson[georgi] wrote:

I have been on diaibility since my surgery in November. There is no way I coulld go back to work. I just don't have the energy for a full time job. I am 59 and feel that I will probably be on disability for quite awhile and maybe I will never go back to work, but would like to volunteer work at some point and give back to the world. Evelyn, I thought that you and I were close to the same age. Not sure, but I am impressed you are already working full time. Is there anyone else on disability and if so how long was it before you went back to work. I was in Pharmaceutical sales and getting in and out of the car in this Arizona heat is a killer, plus hauling around samples. Just can't do it right now. [ plus no one wants to hire an OLDER female Rep LOL]

Payson

Hi Payson, I had my surgery in Nov also. I am returning to work on Monday after 11 months off. I am going back part time for now and I will see how it works out. I am 53 and feel pretty good concidering. Getting back to work will make me feel whole again. I am blessed to be in this position I know. Every one is different and has to do what makes sense to them. Good luck and God bless.

Hi Payson,

I just read your post and kind of answered in the previous post.  My doctor told me I would never work again after my surgery.  I had the McKeown surgery where they do 3 incisions, neck, abdomen, and side to back.  I cried because I absolutely loved my job and didn't want to retire until I was 70.

A good friend told me to file for SS Disability and if I got good again, they would take me off.  The first trip to SS, the agent said, No problem, we are very familiar with esophageal cancer and we'll put the paperwork through right away.  I got my first check 5 months later.  Just in the nick of time because that is when my sick leave ran out.  Then, I saw the State Disability doctor and they put me on Retirement Disability. I only got $10 a month more, but it helps.  It took me 2 years to adjust to being retired and disabled.  We have found that we can get along and aren't going to be gloomy about what we don't have, but we will be happy for what we DO have and what we CAN DO.

For anyone who needs to go on disability, look for the other things that are available for the disabled.  Federal Parks system issues permits and NYS parks issue a permit. 

I was operated on 3/7/07 for E.C.released from the hospital on my birthday 3/16.

I told the DR. that i was going back to work as soon as possible.The DR. said the odds were against me. I was a finish carpenter , worked 6 days a week for years and never sick . It has been 2 1/2 yrs only can  work a hr. or 2 at home  before I must take a long nap.  I do not think i will ever be what I was ,it has taken me a long time to except the fact that i may never  go back to work. I also must release I am 60 now not 30.

I pray every day to GOD that i will have a better day tomorrow than i had  today also pray that i will be a little stronger tomorrow  than I am  today. the prays are working for I am stronger, disease free since last OCT.  and most inportant still alive.I like to thank that some day i will go back to work a person can dream can't he. At times i get depressed because i am not what i was ,I must remember I am 60 not 20.  

                          life is great  Pete

Pete, I am really impressed with your ambition and determination.  My husband is, just today, working on his fourth course of chemo.  We just found out that his primary mass at the GE junction is completely gone and most of the ones that had metastasized to the liver are so much smaller now that they weren't even measured; all but two of them.  He is responding very well and even gained a few pounds.

His problem is like yours, where he is fatigued.  Did I mention he is 62?  He says he's like a quarter horse.  He goes like a house-a-fire until noon and then it's nap time.  He has tried to stay awake and still keep busy and even in the middle of a project he just simply is too tired to carry on.

He has been a heavy equipment mechanic up until March 30 of this year when he was diagnosed with esophageal cancer with mets to the liver.  He wants to go back to work, but it has taken all this time to figure out the disability and get it going which is supposed to start in a couple of weeks.  I think he should not even try to go back to work, but instead do what he can at home and just go for an early retirement.  He will find something to do, as he always does; perhaps just not in the work for pay force.

What do you think?  Have any of you besides Pete had circumstances similar?

 Good luck to you Pete, but when it's time for a nap, I believe you have earned it and don't even feel guilty about what you should or should not have done.

Pam