Confused and Discouraged - Need Advice

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CharlotteMe
CharlotteMe Member Posts: 42
edited June 2014 in Stage III Breast Cancer

Sisters and Friends,

After Stage 3 diagnosis in Nov 2010, I had bilateral mastectomy, 29 weekly chemo treatments over 7 months, 6 weeks of radiation, followed by Femara. During treatment I experienced just about every serious side effect know. I am hugely grateful that treatment has had a positive outcome in that I show no evidence of disease! However, I am "much worse for the wear." I suffer from significant memory problems, neuropathy, joint/tendon pain and problems, lung scarring from radiation, diminished stamina and other lingering side effects. I have gone through a survivor care therapy program at my medical center and I have improved quite a lot since finishing treatment, but I know I will never be the same person I once was. I can accept that.

I was emotionally strong and positive through treatment and immediately after. I grieved for my losses and felt fear of recurrance (still do), but I was able to somehow keep my perspective and not succumb to depression.

Lately I have been struggling with feeling overwhelmed and discouraged. Much of this has been triggered by our financial situation and with trying to return to employment. As you know, the medical costs of cancer are staggering and I was working very part-time at the time of my diagnosis and could not work during treatment. I continue to have very high medical expenses and we have a son in college.

I applied for social security disability and was turned down! Big discouragement as others seem to get approved for far less that what I've been through. Our financial situation is such that I cannot afford to spend years waiting and fighting for something that I am not guaranteed. So I need to find any job that is mostly desk work, something that I am mentally and physically capable of doing.

I am in my mid 50's and formerly worked as a graphic artist. I took some time off to raise my family/care for our special needs child. Many of my skills are outdated and employers seems to want web design skills rather than traditional print graphic arts skills now. I also doubt I can handle the learning curve, deadlines, and stress of the field I formerly worked in. I have a BA in Communications and about 15 years of work experience.

So I have decided to simply look for a customer service type job with a local hospital or other similar job. The pay is much, much lower, but enjoy helping people and I think I could actually do this type of job. The reality is that I am no longer the "star performer" that I once was. When I tell some of my friends and family they simply don't get it! A few members of my medical team also don't seem to want to admit that after all I've been through I am not the same as the person I was when I walked in 3.5 years ago. Many days I consciously struggle to simply walk normally and not look like a 90 year old lady! I feel like some people I know will look down on me for taking this level of job thinking it is a waste of my talent, experience, and skills.

I feel like people who have never experienced cancer treatment sometimes think I now lack ambition or am lazy. I once ran my own business, was successful as an administrator in higher education, and functioned as a talented graphic artist. Now I know I am no longer capable of these positions and just want to earn consistent income, contribute towards social sec retirement, benefits, and even just be successful at getting hired. My resume looks like I am over qualified for many positions I apply for so I find that I "dumb it down" because I am truly not capable of what my past experience would lead to believe.

Should I look for part-time positions just to pay some of our bills and continue to try to regain/rebuild my own business in an etsy type arts and crafts field or should I just accept that I need to work full-time at a less demanding office job for a few years until we can get out of the financial mess we are in and have the money to buy a newer car, fix things around our house, and have additional benefits?

I am so discouraged and easily fall apart emotionally some days! Why is all this employment stuff and financial stress so much harder for me than treatment was?

Sorry for the long post. I just had to ask for help from others that "get it" and most other people simply don't!!!

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  • overjoyed4life
    overjoyed4life Member Posts: 239
    edited August 2013

    Dear  CharlotteMe,

    I truly understand what you are going through.  I am not the same person I was in 2010. I was halfway through my nursing classes when it hit me. I feel like I am 50 going on 90. Fortunately I was approved for ssdl in March of this year but it took a while.  Stage 3C. Even though we are down we must not ever give up the fight. I just wanted to let you know you that you are not alone. 

    Love and Blessings

    Sharon

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  • karen1956
    karen1956 Member Posts: 6,503
    edited August 2013

    Listen to your heart and do what you feel is right for you.

    Some of the side effects you are experiencing might be from the AI's.  I had lots and lots of problems on AI's and aftering enduring for 3 1/2 years said enough is enough...QOL is more important!!! 

    Reapply for disability....they often deny people....and people sometimes win the second time around.

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  • jennyboog
    jennyboog Member Posts: 1,322
    edited August 2013

    Sorry to hear you are struggling sweetie.  I'm sitting here now with a heating pad on my back and have taken a pain pill...just as I do many nights.  So, yes I totally agree, we are not the same as before dx. I have a 7 and 5 yr old it is tough some days.  I have returned to work and even though its stressful and physically demanding at times I'm glad I did it.  I can only speak for myself but going back has made my life feel normal again and has taken my mind off BC.  I was in a horrible spot right after tx., depressed, angry, bitter, etc.  Going back to work saved me as weird as that might sound.  When I mention my aches and pains at times to my family they say well you are getting older.  Yeah, I know that!  They don't understand these pains are different, I'm sure age is a factor but these pains didn't happen gradually they happened overnight, I'm 37 not 90.  Anyway, sorry for the rant....could you apply again for ssdi, maybe with a lawyer (I think that helps).  Do what you know you can handle, what your heart guides you to do.  Life is too short to be miserable, get something you can handle and are happy doing. Hugs.

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  • CharlotteMe
    CharlotteMe Member Posts: 42
    edited August 2013

    Thanks for the words of encouragement! It makes all the difference just being understood, and really, nobody other than my fellow sisters on this journey can possibly know how we feel at times. My husband is wonderful about all this for the most part but I know in my heart of hearts I might as well be speaking a foreign language to him when I try to explain some BC related feelings, thoughts, and disappointments. And my mother, well, let's not even go there!



    I think I've been feeling the "piling on" of multiple issues (mostly physical + financial) and it all gets to be too much sometimes!



    I especially appreciate the comments about following my heart and doing what I think is best for me and my family. I will simply have to live with the fact that some people will not and cannot understand what it's like to live post BC because they've never experienced it.



    I would welcome your input if you have something more to share!



    Thanks again for listening.

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  • rozem
    rozem Member Posts: 1,375
    edited August 2013

    i could have written the exact same post!  i am in the same spot career wise.  I am fortunate that i live in canada and we have public healthcare so no medical expenses but i did have a loss of income of almost 2years.  While we arent struggling we need 2 incomes, kids and life are expensive.  I have had just about every complication aswell and the surgery last year was the icing on the preverbial shitty cake.  Shutting down my ovaries has just added another blow to my body.  I feel 90 and am only 44.  Some days I find it hard to get out of bed because my joints/bones/muscles ache so much. I am exhausted like never before 

    I recently got a call from my ex-employer asking if i was ready to come back "you must be feeling great!" ah no - i feel like shit every day. I dont think i can go back to what i was doing - lots of travelling,  attending trade shows where im on my feet for hours on end.  I was a buyer and responsible for millions, I think i would bankrupt them if i went back -my brain feels fried, I am no where as "quick" as I used to be.  I can barely remember what someone said to me 5 mins ago. 

    So i did find a job...I start in september. The job is in sales but im considered an independant so i dont need to go to an office every day.  I set my own appts and while i will be on the road the territory is manageable.  Yes this is not at the level that i was working - i had an entire dept reporting to me.  Right now its all i can handle - it allows me to make my own schedule and work when im feeling good - and work from home the rest of the time.  I wont be making the income i was previously but i figure i need to ease into it and this made the most sense to me.

    i am terrified of starting, I am hoping once i start i will exercise my mind which has been blasted by chemo and focused on the big C for too long.

    i think we just need to start slow,  keep our expectations in check and know that although we are not the same people thats ok too

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  • pupfoster1
    pupfoster1 Member Posts: 1,484
    edited August 2013

    ((((HUGSSS Charolette)))),



    You've been through the ringer! I am not sure what might happen, but you should at least appeal the denial. I can't remember what their guideline is, but Stage II or lower may not be eligible, which is poppycock in my eyes for exactly what you have experienced! I would reiterate ALL the SE's you have experienced, as well as the ones you are experiencing now as a direct result of tx. And be sure to say you do not feel mentally or physically able to work full time. I am Stage III and was denied my first time, but was granted the appeal, and even got retro. It's definitely worth a try.



    Keep on pushing. I know people say it gets better with time, and a lot of it truly does but be sure to be kind with yourself and if need be see a counselor/doc for therapy and perhaps meds. Many of us suffer from PTSD and as such deserve the help others receive with it.



    Keep us posted.



    Love,

    Sharon

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  • hopefour
    hopefour Member Posts: 459
    edited August 2013

    CharlotteMe...I agree that you decided what course you want to take concerning a career based on what is best for you! Remember no one else showed up for 29 weeks and took your chemo for you, no one else showed up for your 6 weeks of rads...it was you who  showed up and sat in that chair while poison was dripped into your body, it was you who showed up and  laid on that table everyday for 6 weeks...so this is YOUR hard earned life that you're showing up for each day from this day forward!! 

    People mean well and I am sure care very deeply for you, but whatever their perceptive of you is does not mean that its the perceptive you now have of yourself. Breast Cancer changes you, but its not your job to change everyone's perceptive of who you are now...some can grasp the changes, some deny the changes, some can't relate ( I understand..I didn't before BC either) and some are just clueless!

    Thankful you feel like you can share with your sisters here...I feel the same! 

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited August 2013

    Charlotte, I think its wonderful that you are considering a less demanding job.

     I am also not the same and could not work at the same level nor do I want to.  I've made my 'miracles' happen at work--I did it, i'm glad i had the chance, but I don't want to work that hard again.  time for me.

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  • J9W
    J9W Member Posts: 395
    edited August 2013

    Hi Charlotte,  I think working in customer service at a hospital would be a great fit. You would have compassion for anyone walking in the door or calling for help. I know that if I had to ask for service in a hospital setting, I'd like to work with someone who understands what it's like to be on the other side of the customer service counter.

    I agree with all the others, YOU do what's right for YOU and yours.  J9

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  • CharlotteMe
    CharlotteMe Member Posts: 42
    edited August 2013

    All your comments are helping me gain perspective. I also don't feel so alone knowing other's with similar diagnosis have faced many of the same challenges and feelings! You truly "get it!"



    I am more hopeful to know some of you were successful at getting hired post treatment. Working at less demanding jobs has been necessary and a good thing for others here. I am going to persue those types of jobs and hope and pray someone will hire me, even if only part time at first.



    I cannot tell you what your comments have meant to me. I WISH I COULD HUG YOU ALL!!!

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  • Liz52
    Liz52 Member Posts: 3
    edited August 2013

    Hi Charlotte,

    Wow, Your story parallels mine so closely that I could have written it! I completely understand how you feel. You are not alone. I have talked to other cancer survivors who are in the same situation. When we're in our 50's or later, I guess we sometimes don't bounce back so easily. It is harder when there are financial pressures on you. 

    You can only do what you can do. We all do the best we can. It may be a good idea to take a job with less pressure, at least for a few years. Then see how you feel. That's what I'm doing!

    Good luck!

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  • lkc
    lkc Member Posts: 1,203
    edited August 2013

    Hi Charlotte, As an oldster perhaps I can chime in. I do remember feeling exactly like you back in the " early days". I felt I would nevr regain 'Me" back. Memory issues, lak of stamina, painiful joints, lung scaring, you name it. I decided to leave an extremely demanding and unfulfillinh job, and floundered abit and thn took a job which was superfluous , just to get my feet wet and to see if I was able to perform. Got my confidence back and then went for it, by starting my own company which is related to breast cancer. Sucess for me is living and doing the best I can. I am mentally strong and physically much much better. I still hve pretty bad memory problems, so I write everthing down. I treally don't care what people think anymore, I know I am blessed everyday. You willefinitley get there too. Take it day, by day, the rieght road will present its self and you will now what to do. It does get easier with time dear.

    God Bless and congratulations on getting through the Treatment!

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