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What Do YOU Disclose? Cancer Survivors in the Workplace

Phyllis Johnson Health Guide August 17, 2009
  •   A few weeks ago I found myself with twenty of my colleagues in a classroom doing chest compressions on plastic dummies.  Our school thinks we should know CPR, so there I was pressing away on a dummy's chest when my own chest and side muscles on the right started to cramp.   I was ...

21 Comments
  • PJ Hamel
    Health Guide
    Aug. 17, 2009

    Phyllis, I was just thinking about this very subject tonight. I'm having increasing trouble pulling words out of my head like I used to - have to struggle to find the vocabulary that used to come so naturally. I'm a writer by trade; do I mention this to my employer, in these times of potential layoffs and cutbacks? N-O! No way. I'll struggle in silence, because...

    RHMLucky777

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    Phyllis, I was just thinking about this very subject tonight. I'm having increasing trouble pulling words out of my head like I used to - have to struggle to find the vocabulary that used to come so naturally. I'm a writer by trade; do I mention this to my employer, in these times of potential layoffs and cutbacks? N-O! No way. I'll struggle in silence, because a single chink in the armor might be the difference between earning a paycheck or standing in the unemployment line... and i've been treated wonderfully well by my employer, beginning when I was first diagnosed and they bought me a laptop, so I could stay home if I wanted to work from home. But I've found it's often best to say little, and listen a lot. Hardr to get in trouble that way!

     

    Thanks for this post - it does make you think.

     

    PJH

    • Phyllis Johnson
      Health Guide
      Aug. 18, 2009

      I agree, in the workplace it's usually best not to mention problems unless you need to ask for specific accommodations to be able to do your job.  I bet your finished product (even with the occasional problem with finding a word) demonstrates your experience and wisdom in ways that your potential replacement wouldn't have.  You do a great job of finding...

      RHMLucky777

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      I agree, in the workplace it's usually best not to mention problems unless you need to ask for specific accommodations to be able to do your job.  I bet your finished product (even with the occasional problem with finding a word) demonstrates your experience and wisdom in ways that your potential replacement wouldn't have.  You do a great job of finding the right words here.

    • PJ Hamel
      Health Guide
      Aug. 18, 2009

      Thanks so much, Phyllis - encouragement is always welcome! PJ

  • Anonymous
    Sandi
    Aug. 22, 2009

    Boy can I relate. My memory and speed of thought is not what it used to be, by any means. I too had just started a new job, as a dental assistant. My employer was great, up until about a week after all my treatment. At that point he tought I should be back, mentally where I was when I started (fresh out of school). Needless to say I was not. Unfortunately,...

    RHMLucky777

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    Boy can I relate. My memory and speed of thought is not what it used to be, by any means. I too had just started a new job, as a dental assistant. My employer was great, up until about a week after all my treatment. At that point he tought I should be back, mentally where I was when I started (fresh out of school). Needless to say I was not. Unfortunately, no one told me I may have memory and concentration problems, and I internalized my problems. I changed jobs, only to have the same problems, especially with numbers.

    Fortunately for me, I learned that I was not dumb, but having these problems as a result of the chemo.

    I am now happily retired, and good thing, because the Chemo Brain is still here, but I not longer feel stupid.

    Wish someone had told me.

    • Phyllis Johnson
      Health Guide
      Aug. 22, 2009

      I've seen the occasional article in newspapers, etc.  Maybe doctors are afraid that suggesting we might have cognition problems from the treatment will actually cause them by the power of suggestion.  It is true that when I was in my foggiest chemo brain phase, I panicked every time I couldn't think of a work or focus on a task.  My husband had...

      RHMLucky777

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      I've seen the occasional article in newspapers, etc.  Maybe doctors are afraid that suggesting we might have cognition problems from the treatment will actually cause them by the power of suggestion.  It is true that when I was in my foggiest chemo brain phase, I panicked every time I couldn't think of a work or focus on a task.  My husband had to keep reminding me that I had those lapses before, and that not every forgotten phone number was a crisis.  For me it was, and I may have shed as many tears over the years during moments of mental frustration as from my actual cancer diagnosis.  I'm glad you are enjoying your retirement.

    • Andrea
      Aug. 23, 2009

      Two workplaces, two experiences with BC.  And the first one wasn't mine.

       

      I worked in the admin office of a University department.  Four women, and we were a tight unit.  We ranged in age from twentysomething to fiftysomething (me).  As a group we had chemistry (why do people think this concept only applies to romantic relationships?). ...

      RHMLucky777

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      Two workplaces, two experiences with BC.  And the first one wasn't mine.

       

      I worked in the admin office of a University department.  Four women, and we were a tight unit.  We ranged in age from twentysomething to fiftysomething (me).  As a group we had chemistry (why do people think this concept only applies to romantic relationships?).  We were like family.  As the saying goes, you can't choose your relatives, and you don't usually choose your workmates either.  But in both cases, sometimes you get lucky.

       

      One of our group, whom I'll call CA, was diagnosed with BC.  She concealed nothing from the rest of us and she had our complete support.  It's not overstating the case to say that we all went through the experience together.  I will always remember the distress when CA decided to go ahead with chemo knowing it was just a preventive measure (she had no affected nodes).  She is a small person and we could barely stand the idea of that little body being bombarded with toxic chemicals when it might not even be necessary.

       

      Fast forward to about a year and a half later.  I was working in a a different department when I was diagnosed with BC myself.  It's ironic to use the concept "lucky," as you all know, but I did feel lucky to have gone through CA's experience before having to go through my own.  Like her, I concealed nothing from my workmates.  My new team wasn't close like my old one, but it included mostly women, mostly younger than me, and I figured if I was the first person they knew with BC, I wouldn't be the last.  The reaction was mixed.  Those who had other experience with BC - friends, family etc. - were easier to deal with.  Others seemed a bit afraid of me.  Throughout chemo and radiation I continued to drag myself in most days, though for much of the time I was "present but absent."  (I should note that CA came with me to my first three chemo treatments.)

       

      My manager, a brilliant overachiever 10+ years younger than me, had no experience with BC but was great throughout.  She even negotiated more sick leave for me when I had exhausted the standard allocation.  But when my treatment was finished, her attitude changed: a noticeable hostility crept in, and grew as I struggled with chemo brain, neuropathy and fatigue. These were aggravated by problems at home with my husband and teenage son.  She and I had never discussed such things before (our working relationship lacking the aforementioned chemistry), so I figured that introducing them in the context of my BC-related problems would seem like making excuses.  After I had made some noticeable mistakes, she announced that she had requested a meeting with our HR manager to discuss "some performance issues."  I went prepared, so I thought - I printed out some material about chemo brain to give them both and was prepared to discuss it.  It didn't go at all as I'd imagined.  She went on the attack immediately, I was defensive and flustered, and the HR manager (also female) did not mediate.  In the end I didn't even mention chemo brain and came away furious and demoralised. 

       

      As it happens our working relationship has improved since then; that was the low point.  But ever since, I have been keeping an eye out for other jobs, and I wonder what I'll say if I'm actually invited for an interview and the subject of health and fitness comes up.  My instinct is to say nothing.

    • PJ Hamel
      Health Guide
      Aug. 23, 2009

      Thanks for this detailed example of the way people around you "handle" your breast cancer and its after-effects, Andrea. My advice? Say nothing. First of all, you're not required to say anything. Second, HR isn't supposed to ask you about personal issues like health. If they ask "Are ou a healthy person?", simply reply in the affirmative. I don't believe chemobrain...

      RHMLucky777

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      Thanks for this detailed example of the way people around you "handle" your breast cancer and its after-effects, Andrea. My advice? Say nothing. First of all, you're not required to say anything. Second, HR isn't supposed to ask you about personal issues like health. If they ask "Are ou a healthy person?", simply reply in the affirmative. I don't believe chemobrain qualifies as "not healthy," any more than menopause being "unhealthy," when all hell breaks loose in so many ways! It's a temporary condition, healed with time. I believe you'll be better in time - it took me maybe 5 years all told, but I AM better. Not as sharp as before, but who knows if that's age, mental-pause, or chemo... I'm sorry you lost your original group of colleagues; that sounded like the ideal situation. But I'm a believer in things happening for a reason, and better outcomes waiting in the wings. So, good luck - and write yorself lots of lists. That's STILL my coping strategy... PJH

  • Debz
    Aug. 21, 2009

    When I was Diagnosed with cancer 9 years ago I worked at the Middle School of my youngest son, (not a teacher) it was part time, and it just so happened that when I was Dx'd it was summer.  Well about 1 year later after chemo and radiation I was working for a major cell phone company, one morning I woke up with a wild fever, my left arm was bright red,...

    RHMLucky777

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    When I was Diagnosed with cancer 9 years ago I worked at the Middle School of my youngest son, (not a teacher) it was part time, and it just so happened that when I was Dx'd it was summer.  Well about 1 year later after chemo and radiation I was working for a major cell phone company, one morning I woke up with a wild fever, my left arm was bright red, and I couldn't move it.  I called to say I was sick, and unable to come in, however I was told as there was no one to cover me, I had to come in.  being young and stupid I went in, but left shortly after. finding out I was now going to have to deal with Cellulitus (sp?) I quit that position, as many would have. 

     

    Go one year forward, I am working for a major greeting card company, it was 2 days before Valentines Day, this time my left arm was HUGE! 3 times the size it should be, I went to the Dr. the following day, (regular Appointment) and he immediatly put me on dissability for lymphodemia.  My boss was so upset she said I couldn't do this to her at this time, I needed to ignore the pain and keep working until after the holiday, She didn't care.  I was mortified when she let me go, saying I refused to come to work. 

     

    Now I work the high school my children graduated from, have for 5 years.  They are wonderful, if I have a problem they are right behind me.  I have had to come to work wearing the full bandaged arm, and after that the sleeve.  They never question why.  They know and they know what complications come with it.  Many of the teachers and staff have been through it or have a family member taht has been through it. 

     

    I work with the parents of the students and I am concious of not telling them about my cancer, but am very vocal on self examination, and mamograms.  I will tell them they need to go and have them done regularly. 

     

    Even though I had a bad experience at work, I have found a place where I can not worry about loosing my job.

    • PJ Hamel
      Health Guide
      Aug. 21, 2009

      Deb, I'm SO glad you've found someplace that understands the challenges that come with cancer. Those other places obviously have bad karma, and it WILL come back around and bite them! thanks for sharing - PJH

  • Haralee
    Aug. 20, 2009

    Since I was in the health care buisiness I thought I was safe. I was, but too much disclosure about chemo brain and sudden menopause symptoms to those not familiar with cancer brought some skeptisim. I was once questioned if I really was unprepared rather than just suffring "some made up cancer treatment symptom"! Chemo brain does sound funny, if it was...

    RHMLucky777

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    Since I was in the health care buisiness I thought I was safe. I was, but too much disclosure about chemo brain and sudden menopause symptoms to those not familiar with cancer brought some skeptisim. I was once questioned if I really was unprepared rather than just suffring "some made up cancer treatment symptom"! Chemo brain does sound funny, if it was call hypocamusamnesia fatigue syndrome maybe it would be more easily acknowledged.

    It is a fine line of too much information and to what end that we all tread.

    • Phyllis Johnson
      Health Guide
      Aug. 20, 2009

      There is good documentation about chemobrain, and it is hard to know where the chemo ends and old age "senior moments" start.  I know that at least some of my problem was definitely treatment related because about five years out, it started to get better.  I could finally remember a seven digit phone number without looking at my paper three times!...

      RHMLucky777

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      There is good documentation about chemobrain, and it is hard to know where the chemo ends and old age "senior moments" start.  I know that at least some of my problem was definitely treatment related because about five years out, it started to get better.  I could finally remember a seven digit phone number without looking at my paper three times!  

  • Jan
    Jan
    Aug. 20, 2009

    Since my attorney job did not require any physical effort, fellow employees seemed fine with my lymphedema. One time, however, a male attorney asked me to carry a heavy briefcase for him, and I had to tell him I couldn't do so.  When it came to thinking skills, I avoided any mention to my colleagues of chemobrain or other mental fogs.  People judged...

    RHMLucky777

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    Since my attorney job did not require any physical effort, fellow employees seemed fine with my lymphedema. One time, however, a male attorney asked me to carry a heavy briefcase for him, and I had to tell him I couldn't do so.  When it came to thinking skills, I avoided any mention to my colleagues of chemobrain or other mental fogs.  People judged others on their intellectual prowess, and I certainly didn't want to be listed among those considered cranially challenged.  At a sensitivity training class when I misspelled the word "rhythm" on the board, someone pointed it out with obvious derision.  I thought it was insensitive of him to bring that up, but at the same time was surprised that I couldn't come up with the spelling right away.  So it is refreshing to read that other cancer survivors are similarly challenged mentally long after the completion of their chemotherapy.

    • PJ Hamel
      Health Guide
      Aug. 20, 2009

      Thanks for jumping in here, Jan. I'm nearly 8 years past chemo, and have never regained my former mental facility. However, it could be the result of menopause, age... who knows if it's chemo-brain? I function just fine; but I'm aware I'm simply not as quick as I used to be.

       

      As for derision, try this: I was at a marketing conference that involved an...

      RHMLucky777

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      Thanks for jumping in here, Jan. I'm nearly 8 years past chemo, and have never regained my former mental facility. However, it could be the result of menopause, age... who knows if it's chemo-brain? I function just fine; but I'm aware I'm simply not as quick as I used to be.

       

      As for derision, try this: I was at a marketing conference that involved an "expert" critiquing catalogues. He flashed a page of the catalogue I write for up on the screen - about 350 people in attendance. I happened to be pictured on that page. He proceeded to make fun of how I looked - old, haggard... And he KNEW I was in the audience. I later wrote him that he should think twice about denigrating the appearance of ANY woman, let alone a middle-aged woman, let alone one who just happened to have come off of 4 months of chemo and barely had her hair back... he never responded.

       

      Good luck with your future spelling! Wink PJH

    • Phyllis Johnson
      Health Guide
      Aug. 20, 2009

      Is he a genuinely mean person?  If he consistently says things like that about women and/or older workers and he hasn't been sued yet, he will be.

    • Jan
      Jan
      Aug. 20, 2009

      That is very insensitive...I can't believe he said that.  But the older I get, the less shocked I am about human behavior.

  • jomo1960
    Aug. 20, 2009

    It will be one year ago on Sept 17th that I was told I had Inflammatory Breast Cancer. I started chemo on Oct 1st and at first I thought I was going to be able to work but my treatments were every other week and my blood count was always very low, even with Neulasta, so I went out on disability. My office called me on Oct 17th to say the office was closing...

    RHMLucky777

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    It will be one year ago on Sept 17th that I was told I had Inflammatory Breast Cancer. I started chemo on Oct 1st and at first I thought I was going to be able to work but my treatments were every other week and my blood count was always very low, even with Neulasta, so I went out on disability. My office called me on Oct 17th to say the office was closing on Dec 20th and the work going to another state. After 30 years with the company, I no longer could move when they did (I had moved 4 times to different states to save my job). I finished my treatments, had bilateral mastectomy, had 33 radiation treatments, and additional chemo, that all ended end of May. I was on short term disability until April 3rd (was only allowed 6 months) and officially retired. I have severe Neuropathy from Taxol. I would like to find a job but how do I do that in this economy with others that do not have BC trying to find a job? I would have to explain why I limp when I get up from sitting too long. I also have trouble concentrating. How am I going to learn a new company's policies and procedures? Like you, I have trouble with finding words sometimes. What if this would happen in an interview? Who is going to hire me? My hair came in curly and very gray in front. I can't color it yet. How much do you tell a prospective employer about your BC? I would be a liability, even if I don't need their healthcare benefits (I get that with my retirement). One saving grace is that my company hired an attorney as part of long term disability and I was approved for Social Security Disability. The attorney said that IBC was on the automatic approval. I make about 60% of my old pay with the SSD and retirement so I at least didn't have to sell my home. But, I want to work. I think the Neuropathy would be the real reason I can't work right now. I am hoping it will get better. I want to work but how do I get a company to hire me?

    • Phyllis Johnson
      Health Guide
      Aug. 20, 2009

      You will want to check into the details of your SS disability.  IBC is an automatic qualifier for it, but you might lose it if you go back to work full time.  Working full time would be great, but suppose it turns out that you aren't well enough to keep it up?  Would you have to start all over with the SS disability process?  I don't know...

      RHMLucky777

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      You will want to check into the details of your SS disability.  IBC is an automatic qualifier for it, but you might lose it if you go back to work full time.  Working full time would be great, but suppose it turns out that you aren't well enough to keep it up?  Would you have to start all over with the SS disability process?  I don't know the answer to that question.  It's just an example of the kind of thing you need to get the facts about.  Maybe you could find a steady volunteer position that would get you out of the house, help you feel useful, and give you an idea of whether you have the stamina and physical ability to go back to work.  If the volunteer work goes well, you would have a person to serve as a reference for your post-cancer abilities when you apply for a paying position.

    • jomo1960
      Aug. 20, 2009

      Thanks Phyllis. Yes, SSD has a Ticket to Work program for when I am ready. Part of that is allowing you to work 9 months and keep your benefits. After the 9 months, if you continue to work your benefits stop. At any point after that and you find you can not work, the benefits start back up without having to go through the approval process again. I would really...

      RHMLucky777

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      Thanks Phyllis. Yes, SSD has a Ticket to Work program for when I am ready. Part of that is allowing you to work 9 months and keep your benefits. After the 9 months, if you continue to work your benefits stop. At any point after that and you find you can not work, the benefits start back up without having to go through the approval process again. I would really love to go to work, but I know with the Neuropathy the way it is, I can't just yet. When I'm ready, I will use my Ticket. My thinking is that prospective employers may not want to hire someone recently diagnosed with BC, and also when I'm ready, my time away from work may not help. I actually thought about volunteering at the hospital though. I can volunteer 4 hours a week. But, you have to be able to walk alot, to start out, due to the 1st assignments are usually patient transport. I really would like to work with the babies, so I'm going to check into it further. Maybe they can make an exception because of my disability.

      thanks, Johanna

  • Jo-Ann
    Aug. 17, 2009

    When I was diagnosed with bc two years ago, I was working as a teacher in the same school I'm in now.  The staff, community and students were extremely supportive.  I  took four months off, and then I worked part time when I was recovering from my second mastectomy and reconstruction.  The janitor always helps me move things that are heavy,...

    RHMLucky777

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    When I was diagnosed with bc two years ago, I was working as a teacher in the same school I'm in now.  The staff, community and students were extremely supportive.  I  took four months off, and then I worked part time when I was recovering from my second mastectomy and reconstruction.  The janitor always helps me move things that are heavy, and my colleagues, help me when I need help.  While I felt comfortable being open about my cancer in the beginning, I now feel more shy about it.  I sense that people don't  want to talk about it.  It's like I've got something "flashy" they don't have.  Sometimes, it becomes the white elephant in the room.  I remember the first year being really excited about a big family trip we planned to celebrate my one year survival date, and one woman, who is normally quite nice, remarked, "Oh, it's all about you."  I also note that few none of them support me on cancer walks, even though they all make a good wage.  I work mostly with women, and I think they are scared, very scared of bc.  The same year I was diagnosed another woman from our staff died of inflamatory bc, so I can't blame them for their fear.

    Technically, I can't be fired, and my school district has been very supportive.  I agree with you though that sometimes I don't feel like I'm pulling my full weight, because I know that I was physically stronger before.  I take solace in the fact that the most important part of teaching, the interpersonal relationships with the students, doesn't require physical strength or stamina beyond my capabilities.  In fact, it is very healing.

    I am inspirted by your proactive approach, your determination to promote breast health education.  I think I will give it a try.  I am also fascinated by the fact that you explain your lympodema (which I also have) and cancer history to your new students.  I wonder how they handle it. 

    • Phyllis Johnson
      Health Guide
      Aug. 18, 2009

      My students handle information about my cancer history very well.  When I introduce myself to the class I mention some of the ways cancer may affect me in the classroom along with info about my learning style, my family, interests, etc.  Then I ask them to write me a letter telling me about themselves.  I think students feel more open about telling...

      RHMLucky777

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      My students handle information about my cancer history very well.  When I introduce myself to the class I mention some of the ways cancer may affect me in the classroom along with info about my learning style, my family, interests, etc.  Then I ask them to write me a letter telling me about themselves.  I think students feel more open about telling me about their own issues because I've mentioned mine.  At first I was very shy about saying I had breast cancer in a mixed class of 8th grade boys and girls.  Not because I can't say the word breast, but because I felt uncomfortable raising speculation about my own body.  Now it doesn't bother me as much.  I have had quite a few students come up to me privately later and tell me about a parent or relative who is a cancer survivor.  

    • Jo-Ann
      Aug. 20, 2009

      Your approach makes sense.  I'm going to try it, but I have to admit that I am feeling timid.