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Getting back to work.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I was wondering how many of you were able to get back to work after this ordeal? I have not been able to go back to my job. I was a manager of a shoe store. My job was very physical, and long hours. I had to work 48hrs a week, and had to close the store 3 nights per week. I would do two 12.5 hr days a week. There is no way at 92lbs, with the pain I am in, and not being able to eat and drink much, i can work like that. My neck still hurts daily from the dissection, and I have limmited range of motion dispite excercising my neck. I am still in pain with my mouth, and I am on 50 mcgs of Fentanyl daily.

I am still collecting on my insurance policy, but I know that is coming to an end soon. They think that I should apply for disability. I have been feeling inappropriate guilt about my lack of work this past year. Probably because of my insane work ethic. I am the type that crawls to work when sick. I worked until the day before my neck dissection. The job before this I worked 60 to 65 hrs a week. I have no college degree and I am afraid because even if I could work part time, it is not enough income. And also what about insurance? My COBRA will be running out soon too?

The woman who handles my disability insurance says I should apply for disability, I don't know how I feel about this. I am so scared that I will be unable to work and support myself. Thank God I bought and paid for insurance in case I got sick.

I realize this is sort of personal stuff, but my friends do not seem to understand the amount of pain I am still in, and that there is no way I can do the job I used to do. As a matter of fact one friend just called to let me know that the census is looking for people to hire, and drive around. I don't think that is a plan since I am still on a pain patch. :( Most people I know are amazed that I have not gone back to work.

I don't know why I feel guilty applying for disability. Not like I am faking all this crap. I think maybe I also expected my recovery to be much faster than this. I thought I would be back to work by last August latest when I started this journey. I never counted on so much pain, and the side effects of radiation lasting so long.

I am a perfectionist, I think. Also, being a manager for so long it's a control thing. I don't like not being in control. That was one thing God and I worked on this past year. I think I am closer to getting the whole, "Thy will be done." and not MY will. Maybe I am just too hard on myself. I am still struggling with some things.

ratface's picture
ratface
Posts: 1238
Joined: Aug 2009

What your feeling is normal. I am fortunate to work for someone who has allowed me paid sick leave since July of 2009. It will soon run out and I am scheduled to go back on March 1st. I do not feel guilty as I never abused that benefit and certainly needed it this time around. You should explore the disability claim as your medical bills are not over and still can add up. Scans are very expensive.

Head and neck cancer has some of the worst side effects of any cancer because of its location.. The only worst I've read is anal cancer. Some folks take several years to recover so don't rush things if you don't have to. Use every benefit you can to allow yourself to get stronger.

I can empathize with the manager and perfectionist attitude as I was both. I am also still struggling with some of the emotional aspects. Also be aware that employers are required to make reasonable accomodations according to ADA and that can include perhaps a lifting restriction to help you get back to work. Your not the same person you were before and should not expect to funtion at that same level.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I am not a cryer, but I am sitting here, balling. It feeels good to get a liitle validation. I have always been the suck it up and do it kind of person, both mentally and physically, and now that I cannot do certain things, it really bothers me.

It is so true about head and neck cancer. I am BY NO MEANS saying that any other cancer is a walk in the park, or not as bad. It just so many people don't understand about the fact that many head and neck cancer patients die of malnutrition. I have had so many co-workers, collegues, friends, and others tell me about their friend, "so and so" that had cancer and THEY worked through radiation. THEY never stopped working. THEY went right back to work, etc. Awesome for them. I could not. I am glad that they did well during treatment and recovered well. Having to go through this I would never want to see a person suffer through cancer.

I worked myself to death even though I had Fanconis Anemia, I had to make money. I never manifested any problems as far as my blood counts went, but I was still very tired all the time. I had a brother that died because of his FA just shy of his 21st birthday, back in 1993. He had a bone marrow transplant, and did not survive.

I think I have just been through so much and we all have our limits. I have had a lot to deal with emotionally after my divorce, which can knock a person's self esteem into the toilet. Now, I am skinny, and scarred, and not feeling so hot about me. I could not find a date before the cancer. And the way I look and feel now? Forget it. My friends tell me not to think about dating. Just get well. And they go home and can get a hug from their spouse. I have my dog. LOL. It gets lonely.

I am more upset now, than when I was diagnosed. I just handled everything then. I think I am just having problems adjusting to the fact that I am not the same person I used to be. Maybe I will feel better and prettier and more like me if I can get my weight back on.

I had asked my boss last year if I could come back slowly and work less hours, and they basically said no. They were never flexible employers. The company has a hard time keeping managers.

Thanks for your understanding and imput. I am glad I found this site. I am not one for group stuff and support groups, but I am really struggling right now. Just knowing that there are others out there that have been through all this makes me feel like I am not so alone.

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Sweetblood- returned to work as an Inspector at a metalworking factory approximately one month after my last rad. All of my damage was to the mouth, by then, and was only dealing with dry mouth and starting to eat again. Did work a couple partial-days that first week, and my employer was real good about easing me back. All told, I missed 12 weeks of work. I am a workaholic, though, and typically only take 2-3 vacation days/year of the 16 days I could take.

As for your friends and what they know- they obviously did not know about head and neck. My Onco and Rad Drs. advised me from the start that work would not be possible- just the exposure to a virus carried by others while getting the chemo would have nixed it; and, with the way things turned-out, it would not have been possible (morphine, etc.).

And as for dating, and the social life- girl, you've survived cancer. Don't know about your Spirituality, but the stigma of cancer, alone, is a rather large thing to overcome, and one must get beyond the superficial. Such as getting back into the social circles will likely take some time. What really counts is that you feel good about you. Doesn't matter what others think of you- they will think whatever they want to, which, ultimately, makes them feel better about themselves. As a man, I didn't have much of any problem with the superficial, but I do understand how such might be more of an issue with a woman. I would only advise you to search for the beautiful woman and person you are, and be happy with that for awhile longer. As a cancer survivor, perhaps it would help for you to realize how much easier so many others have had it in life of recent, as compared to you, and all of us on this forum. I hope and pray you find the beautiful woman and person you are, now, Sweetblood. You are.

Believe.

kcass

Hondo's picture
Hondo
Posts: 5738
Joined: Apr 2009

I was very lucky the company I work for would let me come in after treatment and leave when I needed too no questions asked. There were times I felt so bad all I could do was to lay my head on a pillow I had in my office and sleep, one of the Ladies would come and close the door so no one would disturb me until it was time to leave.

One day at the treatment center I was feeling so bad and complaining to God about all my trials I was going through, when in came this man and his wife. I could read on his face the struggles and wars this man was fighting with in his self, they called him in as soon as he arrived. While sitting there I was able to talk to his wife, and she almost broke down crying telling me all the pain and suffering her husband was going through. After he came out and they left, all I could do was to pray for them both and thank God for his mercy, because I had nothing to complain about.

It’s hard to understand what a person is going through unless you can walk in there shoes. I will tell you this; you may not be big but you are a very strong person to go through what you have by your self. I remember when I hit paydirt I started reaching up and I was so glad to see God and my Wife reaching down to help me. God brought her into my life and She was the one who I cried with when my world fell apart and I will love her forever for being there with me these three times through Cancer.

Let your strength turn into faith and ask God to open the door for you in the direction he wants your life to go in.

Do not feel guilty about applying for disability you paid into it all your life and that is what it is there for, to help you now when you need it most.

Also now that you found CSN remember this is a place where we all understand your pains and frustrations, sometimes just talking about your problems help in the healing process of our lives.

God be with you

Skiffin16's picture
Skiffin16
Posts: 8071
Joined: Sep 2009

I was lucky enough to have over 1200 hours of sick time available. Even luckier to have only needed to use 300 of those.

But my greatest fortune was having a company that really pulled through for me. I have an IT degree and the majority of work I do is computer related (database generation forecast modeling) for the local government.

They set me up to connect to my work computers over the internet allowing me to do all of my work from home. The majority of my work is rather routine as far as schedules go. Quarterly, Semi-Annual and Annual Reporting with a few projects or scenarios here and there.

They allowed me to do everything from home between January 2nd - September Labor Day Week-end. I did go in for occasional meetings and functions. Then they allowed me to work in office part time (half in the office half from home)for a few months.

Like you and many, if I had to follow a regime as rigid as you it would have been very rough. There were plenty of times that I was just too exhausted. But mainly I had trouble working for more than a few hours at a time before needing to rest.

While doing Chemo, I had so much steroids in me that day, I'd be up until 4AM (working usually) then crash all of the next day.

I often wondered what it would have been like to had to work at some of the jobs I had prior. I don't think I could have made it...it's definitely tough.

It's still hard at times, I still have issues with fatigue occasionally.

John

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey Sweet and John,
For me luck ,I guess is the word. I am a masonry superintendent, I do not have sick leave. The company I work for is paying me while I am off work. I went and talked to them about it today and every point I mentioned was rebutted with-- You have more important things to worry about right now.
To date I have missed 5 weeks. My Rads and chemo start actually next week. My concern is, will I be effective at what I do when I can return. Even though I do not "use my tools" any longer, my job does have a lot of physical requirements.
I wonder about it but I can't WORRY about it. I am sure it will in some way work itself out.
I guess I haven't really said much onthe subject of this post and I apologize for that. Just gettin a little off my chest I suppose.

Blessings on everyone here,
Steve

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I am happy to hear that you are getting paid while off and that your company knows that you have more important things to worry about. My company would not let me take my vacation either. I took my FMLA leave, for 90 days with no pay. Then after that 90 days I was allowed to put in my long term disability claim with my insurance company.

No reason to apologize. I know a lot of people might not really want to talk about the subject, and that is okay. Wasn't sure I should even post it, but as I said it was something that is really bothering me.

Steve, I also want to wish you the best of luck with starting your follow up care. I hope that you will have minimal side effects, and God's peace with you every step of the way.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

KCass, my doctors never said that I could not work. I sort of forgot about the fact that my job is working with the public. Hands on working with the public. That is not a plan when your immune system is comprimised. The specialist I saw that deals with Fanconis Anemia and Head and Neck Cancer had told me one of his FA/HNC patients died from a fungal infection. That scared me half to death. I could not go to that doctor in NYC because my insurance would not pay. I ended up being treated locally which was kind of scary, because they really do not understand my Fanconis that well. So even though I thought I would be able to work during treatment it was not possible.

I am a spiritual and religious person. I still go through my periods of being tested though. I know that should not worry about superfical things like looks, but somedays its hard, when you don't look the same, and you don't feel well, and you talk funny now. At least people can understand me now. :) That has gotten better, and the paralysis on my lower lip does not seem as bad. I only dribble while I drink sometimes. I seem to do better with a straw.

As a man it seems like you guys can get scarred, and go grey and it just looks more distinguished and gives you more character. No so much when it comes to we women. I have to figure out a way to connect with the more confident women I used to be somehow. The one before the divorce, and the cancer. I just have to figure out how to do that. Thanks for seeing I have that in me some where.

HONDO: I wish I had such an understanding boss. When I was working toward the end there, and my tumor on my neck was getting bigger, I was having trouble looking up, and moving my head. I was having a bit of trouble running the boxes of shoes into the walls, especially the higher shelves. Plus I am only 5' 2". So I had to use a step stool towards the end and I was slower than normal. My boss came to my store and was annoyed that I had shoes on the floor on a friday, and that they were not in the walls. That my tumor was not an excuse. Thanks. He also told me that the tumor did not look that bad. He said he thought it would be worse since I told him I had to have it biopsied, and that I had to have more scans, and that it was cancer. Meanwhile it was the size of a large lemon. Let's see how bad he would think it was if it was on his or his wife's neck, God forbid. When I found my tumor he would not let me take sick time to go to the doctor. I had to wait a week for my day off.

I wasn't even taking breaks at work. If I took a half hour break, you just need to make it up. So instead of being there 48 hrs, you were there for 50.5 hours a week. They really were not understanding.

Hondo, i love that picture of you and your wife. It makes me smile every time I see it. You look strong in each other and happy. I am glad that you had her to help support you. My ex was not a supportive man, and never so much as made a cup of tea for me if I was sick. Thank God I was divorced by the time I got cancer. He would not have taken care of me. Even what were his closest friends have told me that he would not have taken care of me. It would have been a bad situation, and I doubt I would have pulled through this if I had to rely on him. Sounds sad and harsh, but it is true.

You are right, I sometimes forget to ask God for guidance. Then I need to pay attention for the answer, lol. I can be pretty hard headed.

SKIFFIN: How awesome that you were able to work from home. Sounds like they were willing to work with you. That's great.

Thanks to all for the posts. I am sorry to post so much, but I have to say I am feeling a liitle better. I think that I have the tendancy to keep a lot of stuff bottled up until I get really upset. I just have to sometimes remember that you cannot jump across the pond in one huge jump. I just need to hop from one lilly pad to the other. Not worry about the other side of the lake. Just focus on the liily pad in front of me.

Thanks again all. Blessings.

cwcad's picture
cwcad
Posts: 117
Joined: Nov 2009

Hi there Sweetblood22!! Boy what a plate load you have on your table. I am glad that you are feeling better after a few posts. The more I read and the more I post the stronger I become. It does help to read and post. I am glad you realize it.

In regards to filing for SS benefits I think that you need to get the forms and fill them out. If you worked all of your life and the doctors say that you cannot work you are disabled. That is what SSI benefits were designed to do. Help people that had worked all of their life and through no fault of their own they are unable to work. You paid into this fund all of your work life. Go online and find out how. How do I know this you ask.... ? Well, it was not through my own volition but through the efforts of my wonderful wife that I am here both physically, mentally, and financially. She managed to file my retirement papers with my union and was also able to get SSI benefits. I cannot honestly say how she did it because the few times that I dealt with SS it was not good. In fact I had someone in SS threaten me with loss of my benefits if I continued to talk in a certain tone.Not the words that I was speaking but the tone of my voice which was squeaking from the radiation and chemo I was taking for tongue cancer. My wife will tell you I was not a happy guy. From that moment on all I did was sign papers and let my wife be my advocate. It worked. Try to get someone to go along with you to help process all of the information that will be needed in filling out your paperwork.

I guess I am lucky but whenever I had a job that provided sick leave I was never told when I could use it. You are tougher person than me for I would have taken the sick leave if I had it coming to me. I worked in construction and worked through many a fever but after the treatments to this very day I am but a shadow of my former self. I have asked my doctor about my inability to regain my strength. Siting examples of other cancer survivors that worked through the treatment or came back from treatment only in better form. He simply said, "They are not you." Then he asked me a question? "Do you feel good or do you feel bad?" I answered, "I feel bad." He went on to say, "I believe you and we are going to work through this."

I believe you Sweetblood. I hope those words give you as much strength as they did for me. Of course you and all of the other cancer member of this forum will be in my prayers this date.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Thanks so much for your post. Your post did give me strength and ease my mind a bit. I am glad that you have your lovely wife by your side.

I can understand the frustration about the conversation between you and the SSI employee. Man I would be hot. I think some people should not be allowed to work with the public, or get better training in dealing with people. You would think people would be more undertanding if you just explained to them that your speaking voice has been effected from HNC. People ask me if they woke me up whenever they call me now.

I got a letter today from Unum saying that they contacted their company that will help me apply for SSI. I can expect to hear from someone that will assist me with this process within two weeks.

Thanks for your story, and thanks for saying you belive in me.

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Again Sweetblood,

I just went back to work last week after 6 months since Diagnosis / Surgery / Treatment etc. from early August last year.

I was warned by a good friend and survivor NOT to go back too early so if you don't really feel ready, then employ whatever means you need for your body to be well enough to deal with a return to work.

I was fortunate to have an understanding Company and insurance to cover my down time.

You may have to settle for being less than a workaholic as per your previous life. Look to what is really important and be guided by your heart. Sometimes less is more.

Guilt shouldn't be in your vocabulary.

Cheers
Scambuster

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

You are right, guilt should not be in my vocab. It has been at times on and off through the years. I think I realize that I cannot be a workaholic anymore, but my friends and some family do not. Course, they are not in my skin, and able to feel my pain and fatigue. I sometimes take peoples comments way too personally. I need to get over that. Not care so much about what people think of me.

janymac
Posts: 31
Joined: Feb 2010

I had Nasopharygeal cancer coming up for 8 years ago. When I was diagnosed and the Dr said that my chemo would last 6 days continuous inpatient infusion in 3 weekly cycles and then followed by daily radio for 7 weeks, my comment was "well I am not going to get very much work done am I?" His reply was that I should take at least 6 months off as the treatment is so tough and damaging. boy am I glad I did - although also felt very guilty to hear of all these people who popped into oncology to have their chemo or radio in their lunch hour. Couldn't work out how they did it. When I did go back to work (8 months after - but that was too soon stil had my PEG, and was having really bad hearing and talking probs from dry mouth and secretions)it was hard work. Everytime tried to work full time it ended in complete exhaustion. I live in ENgland and we have more protection than US. I ended up having to make compromises and in the end took ill health retirement and got redeployed.Wasn't too happy with the job I ended up in but was a good stop gap. I then took a leisurely change of career for which I have just finished training for. It has been a long haul and at times I felt it was too much as exhastion still creeps in if I try to have anything like a social life as well as work. Don't know what your DDA entitlements are, but you must have some protection by "reasonable adjustments". Ask your boss if you can work in the admin side or something. Face to face is hard if you have dry mouth and have to talk alot and anything physical will drain you. Cehck out the "reasonable adjustments" bit , but please do not go back too soon.

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