I was diagnosed in February and have a target date for SCT June 21st. I used all of my sick/vacation time from work and am currently on a private disability and catastrophic leave from work. If sufficient catastrophic leave is donated from my co-workers, I have until around October 15th to get back to work full time.
I am currently living in a second home in order to be close to my medical care, which is about an hour commute to work each way. My primary home is about 1/2 hour to work, which is where I would move back to, but is 1 1/2 hours to medical treatment.
Apart from all of the typical angst this diagnosis has caused, I have had considerable angst about getting back to work. I really like my job and really would like to be in a great position to be able to return to work mid October or before. I am also devising plan "B", which is to retire and go on SSD. Financially, it would be less desirable, but we'd make do and it would not be devastating. Emotionally it might be, because my plan "A" is to get back to my "normal" life and back to work.
My PA from my doctor's office insists that none of her patients work and I should just go on SSD. My doctor says wait and see.
I will be 60 in August.
I would like to hear from people who have had the SCT and have returned to work and also those who have not and what they would do differently. I am feeling good and am in good physical shape and praying for a smooth transplant and will do all I can do to be physically up to par.
Forums
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Carol D. - Name: Carol D.
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: February 2013
- Age at diagnosis: 59
Re: Time to get back to work?
Hi Carol My husband was diagnosed in Jan 2012, and had a sct last May. Next weekend is his "birthday" He too wanted to go back to work Between sick,vac and catastrophic pay. we were set till the end of the year. His transplant went great,but he was pretty wiped out for a few months. Mike was 54 at the time .I am 6 yrs older. To be perfectly honest, I did not want him to return to work.My feeling was ,and is that we were given a second chance at life. I told him him, that I didn't want to see him go back to work hard for a few years,and have to take early retirement, only to relapse 
. He decided in Nov to apply for SSD. His job supplements it, giving us enough to live on and be comfortable. It took a bit of adjustment for him,but now he is enjoying "retirement" We travel a bit and enjoy life together. It is a personal decision, but 1 you will make on your own,no matter what any one else says.Best of luck to you and yours, Karen
. He decided in Nov to apply for SSD. His job supplements it, giving us enough to live on and be comfortable. It took a bit of adjustment for him,but now he is enjoying "retirement" We travel a bit and enjoy life together. It is a personal decision, but 1 you will make on your own,no matter what any one else says.Best of luck to you and yours, Karen-
klamm922
Re: Time to get back to work?
Hey my situation is abit different, since I am fairly young and retirement was not an option.
I was on leave from work (first short term disability, but it ran out and I applied and was granted long term disability)
In my case my dr. said she could write that the average recovery time/ time off work after transplant is one year. But could not come up with other evidence to strengthen my case. (through my own determination I am in good health now. I have spend a lot of time working out to gain back my strength and stamina, but an ongoing concern is the frequency I get sick, and lingering neuropathy)
My LTIP (long term disability) has a clause that after 2 years they investigate and determine that you are not only disabled from your job, but any other job for which you are qualified. They determined I was no longer disabled and terminated my coverage, as I was qualified to work in less "demanding" jobs so not truly disabled. It made more sense for me to maintain my career then take a less demanding job (with less money too!)
What screwed me over-
Like you I wanted to go back to work at least part time, so I was accommodated and paid part time work and part time disability. This came back to bite me in the a$$ as disability determined since I could work part time so I can work full time. They do not recognize cancer fatigue as an issue and told me I should just take a nap after work.
I am now back at work full time for almost a year (3 years post transplant) and I'm not going to lie, all I do is go to work, then go home and watch TV during the week as I have no energy to do much else at night. I go to bed earlyish in order to get up at 7:30am and do it all again (catch the commuter train go to work all day 8 hours etc)
I was on leave from work (first short term disability, but it ran out and I applied and was granted long term disability)
In my case my dr. said she could write that the average recovery time/ time off work after transplant is one year. But could not come up with other evidence to strengthen my case. (through my own determination I am in good health now. I have spend a lot of time working out to gain back my strength and stamina, but an ongoing concern is the frequency I get sick, and lingering neuropathy)
My LTIP (long term disability) has a clause that after 2 years they investigate and determine that you are not only disabled from your job, but any other job for which you are qualified. They determined I was no longer disabled and terminated my coverage, as I was qualified to work in less "demanding" jobs so not truly disabled. It made more sense for me to maintain my career then take a less demanding job (with less money too!)
What screwed me over-
Like you I wanted to go back to work at least part time, so I was accommodated and paid part time work and part time disability. This came back to bite me in the a$$ as disability determined since I could work part time so I can work full time. They do not recognize cancer fatigue as an issue and told me I should just take a nap after work.
I am now back at work full time for almost a year (3 years post transplant) and I'm not going to lie, all I do is go to work, then go home and watch TV during the week as I have no energy to do much else at night. I go to bed earlyish in order to get up at 7:30am and do it all again (catch the commuter train go to work all day 8 hours etc)
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Time to get back to work?
My husband was 55 when he had his auto-transplant. He went back to work 6 months post-transplant. For the last year he has been working 2 days a week. He is enjoying his now part-time status.
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Time to get back to work?
I appreciate the feedback. I suppose a half time or 3/4 time option is available, but financially it would be a wash, so don't know if it would be worth it. I'm not sure if I'm fighting so hard to get back to work because I like my job so much, or if it's because I feel "robbed" of the life I had planned of retiring on my terms at my appointed time, not due to this completely unanticipated situation. I'm also assuming that SSD would be approved and would kick in shortly after the retirement kicked in. So much to think about....
In the meantime, I would appreciate even more people's comments! I know it's different for everyone and even the most fit and quickest recovered people will have their challenges, which I'd like to hear about.
In the meantime, I would appreciate even more people's comments! I know it's different for everyone and even the most fit and quickest recovered people will have their challenges, which I'd like to hear about.
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Carol D. - Name: Carol D.
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: February 2013
- Age at diagnosis: 59
Re: Time to get back to work?
hI Carol, I work part time from home and so probably have the most flexible type of work around! I just kept working throughout my whole illness. I needed a lot of help at times and also was exhausted much of the time. I dropped all extra 'fun' activities except for walking...I was quite injured at the time of dx so that was an additional factor that I had to contend with.
Now, four years later, I am still working part time with my husband. it's a family business, and I didn't want to give up contributing to that...I didn't have any unemployment insurance since my work is not at 'arms length', and to be honest, I never got around to taking out disability insurance or 'critical illness' insurance. I could have delegated this work (book keeping) to another, but wanted to keep working. i think it helped to pull me through the whole process psychologically! I could also have started taking my Canada Pension at age 60, but have decided to wait until 65. I don't need it just yet!
Now am back to a number of interesting activities, and am having to juggle with too much to do and too little time. My hubby and I are in our early sixties and we will retire sometime this decade! The cancer fatigue that Lys describes is real for me also, but I have a chance to get extra rest when I need it.
I was frightened that I might not survive very long after the dx, but so far I am doing well. I have the 'low risk' sort of myeloma, and didn't have any kidney involvement or other other serious co-morbidities...just fractured bones and a high level of 'M' protein in my blood.
So I do think it is entirely individual as to how one approaches taking time off for the treatments, or retiring altogether. The people I know with myeloma either went on a disability insurance, or retired, or in some cases just took time off and then got back to work. Unfortunately, a few also have passed away, which is the saddest aspect to this whole disease, IMHO.
Now, four years later, I am still working part time with my husband. it's a family business, and I didn't want to give up contributing to that...I didn't have any unemployment insurance since my work is not at 'arms length', and to be honest, I never got around to taking out disability insurance or 'critical illness' insurance. I could have delegated this work (book keeping) to another, but wanted to keep working. i think it helped to pull me through the whole process psychologically! I could also have started taking my Canada Pension at age 60, but have decided to wait until 65. I don't need it just yet!
Now am back to a number of interesting activities, and am having to juggle with too much to do and too little time. My hubby and I are in our early sixties and we will retire sometime this decade! The cancer fatigue that Lys describes is real for me also, but I have a chance to get extra rest when I need it.
I was frightened that I might not survive very long after the dx, but so far I am doing well. I have the 'low risk' sort of myeloma, and didn't have any kidney involvement or other other serious co-morbidities...just fractured bones and a high level of 'M' protein in my blood.
So I do think it is entirely individual as to how one approaches taking time off for the treatments, or retiring altogether. The people I know with myeloma either went on a disability insurance, or retired, or in some cases just took time off and then got back to work. Unfortunately, a few also have passed away, which is the saddest aspect to this whole disease, IMHO.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Time to get back to work?
I had my SCT on January 21st. Went back to work full-time five weeks after that. Ya it was tough and yes I get tired in the afternoon but I keep pushing myself and I get better each week. For me work was important because its been part of my life for over 30 years. Plus, we are not yet financially able to retire and still do what we do today. My wife was dead set on me retiring and us moving down the food chain and retiring. But, I told her we were too young to retire just yet.
Disability for me would be 50% of my pay and SSD would be even less so I did not consider those as viable options unless we significantly down sized. I'm holding disability in the back pocket in case turn South in the future.
I'm on maintenance chemo now and that does not help the fatigue. But over time I expect to be at least 80% of normal. Which beats being dead! Jerry.
Disability for me would be 50% of my pay and SSD would be even less so I did not consider those as viable options unless we significantly down sized. I'm holding disability in the back pocket in case turn South in the future.
I'm on maintenance chemo now and that does not help the fatigue. But over time I expect to be at least 80% of normal. Which beats being dead! Jerry.
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Time to get back to work?
Thanks, Jerry! I had read your blog previously and was encouraged by that. How far is your commute?
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Carol D. - Name: Carol D.
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: February 2013
- Age at diagnosis: 59
Re: Time to get back to work?
My commute to work is about 40 minutes. Don't give up work until you are sure you can't do it. Assume you can, give it a try and worse case take disability. The SCT will wipe you out, you need some goals to motivate you to get off the couch after the SCT. A good sense of humor helps also! Keep us posted on your progress. Jerry
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Time to get back to work?
When I said that my husband went back to work part-time after 6 months ... he probably could have after 6 weeks. He just kind of liked the time off!
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
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