Difficulty with work
Hi ladies,
I have read a lot on these forums, but haven't written anything yet. I was diagnosed triple negative bc with 3 lymph nodes involved in April this year. Had 2 surgeries, lumpectomy and lymph node removal. Two weeks ago I finished dose dense chemo - A/C x 4 every 2 weeks and Taxol x 4 every 2 weeks. I worked through chemo, except for two days each chemo round.
My problem is "chemo brain". I kind of dismissed it when I read it about it at first, but I've really found that my brain just doesn't work properly. I make silly mistakes at work, I can't remember things, I get easily overwhelmed etc. My boss told me at my diagnosis that everyone would support me, and I should just do what I need to do to get better. He also said he wanted me to work through it if I could. In reality though, he gets very frustrated when I make a mistake and has been pretty insensitive and showed little understanding of what I have been through. He told me that my support of him (I'm his admin) has been "erratic" and that my work quality has decreased.
I still have to go through 6 1/2 weeks of radiation, and I'm getting to the point where I wonder if I should just take Short Term Disability instead of trying to keep hanging in at work and be subjected to his lack of understanding. I feel (and everyone else has told me) that I've done a remarkable job under very difficult circumstances, but he's my boss and doesn't seem to feel that way. I've talked to him, tried to explain to him what I'm going through, but his attitude just continues.
Does anyone have any experience of working with "chemo brain" and dealing with people who don't understand the problem? I'd appreciate any advice.
DR
Comments
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You are singing my song!!!!! Chemo brain is REAL and that ain't no lie. I finished chemo in January of this year and I swear my brain still doesn't function properly. I'm forgetful. Tell the same story twice, catch mistakes I make at work..........ALL the time. Dr's will tell you that chemo brain can last up to 2 years or longer. Luckily for me I have a great boss (she's a WOMAN, which I also thinks makes a difference) and everyone is so understanding.
I'm kinda the class clown at work (I work at a hospital......NOT a nurse......thank goodness for our patients..lol) and when I can't remember or say something off the wall or can't find something I KNOW I just did we just laugh and move on. That's really all you can do.
My suggestion to you would be to talk to your boss alone and tell him you are concerned that he feels your job performance is suffering and that it bothers you. Chemo brain is real and I hope it gets better for you!!!!
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Thank you for the reply Tabatha. My god, I hope it doesn't take two years for my brain to work better. I guess the problem is, that I know my job performance is suffering, I know I'm making mistakes, and he has told me my job performance it is suffering - but what do I do about it? I can't make my brain work any better. The more mistakes I make, the more he picks, and the more stress I feel. The more stress I"m under, the more mistakes I make. It's a vicious circle. The only thing I can think of is to ask for understanding, which clearly he has none of, or very little if any.
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Chemo brain is real.....I didn't really understand it and didn't think much about it when I read about before starting chemo, but found out it is reall and is extremely frustating AND FUNNY.
I'm sorry your boss isn't understanding of what you're going through. If you're feeling overwhelmed and feel you need a break, take STD for peace of mind. You really do need to focus on your health. I thought I'd be able to work and kept trying, but I ended up staying out for 6 months and glad I did. Although my concentration is getting better and my memory is returning - I still have some "chemo brain" moments. I am 8 months PFC.
Good luck.
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I feel like I had/have significant chemo brain as well. I finished chemo/rads a little over year ago and worked through it all as much as possible. I found rads to not be as hard as far as physical recovery- I think I estimated overall the amt of feeling bad was (for me) roughly equal to about a round and half of chemo- the main difference for me was that I didn't feel I could predict when I feel bad- some days I was fine and some days I I just felt horrible despite having rads 5 days a week for 5 weeks.
With chemo at least I knew when I would feel bad- it was a fairly predictable progression with each round and I took roughly a week off work after each round. I didn't take any time off during rads, but I did get sick for about a week right as I finished up. I think I had been just hanging on trying to make it through and once I finally did, my system collapsed and gave into a sinus infection. Now looking back on it all, I kinda wish I had just taken STD through the whole thing and not put myself through so much stress. The chemobrain will get better. I had to write a lot more things down.
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Deb..everyone has great advice for you and they are so right...I am an admn. also but my boss was a sweetie through the whole thing...Your chemo brain is there and there is nothing you can do about it..but every day it will get better..really! I too made mistakes..wondered why in the heck I did some of the stuff I did...I'm now over one year from chemo and I can tell you that I feel back to almost 100%....it really did get better every day....the good thing about rads is that it doesn't affect your MIND..like chemo does...no drugs...explain to your boss that you do have chemo brain and that it is real!
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Deb, I am just starting chemo, so I can't advise you about chemo brain.....ask me again in a few months! But I do know that you probably don't need extra stress right now in terms of a demanding boss. If you can get by on STD, you might want to take it. That's what I'm planning to do.
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Deb...chemo brain is real - although it has been 10 years since mine, I did manage to work through it all. It does not instantly go away once chemo stops either. I was a single parent at the time and std was not available to me as I was a contractor at the time and had no choice but to keep working. If it is available to you, you might want to take it - I would have! Best wishes...LowRider
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Deb,
I'm so glad you posted. I'm on STD now from a DIEP reconstruction procedure last Friday, scheduled to return to work in 2 weeks. Problem - I can't perform my old job due to chemobrain issues. Prior to chemo, had job w/ long hours, much responsibility, stress, multi-tasking, constantly shifting priorities, much 'urgent' items incoming during the day to juggle/act quickly on. I did it well.... Worked thru chemo, tho' they worked with me to transition me to a lesser stress job - worked great. Did rads. Job ended (for everyone on the program) - had to find new one within same company. Couldn't find one at the lower pace, as that's not my qualifications. 3 weeks ago took new job - was like the old. Can no longer do it. Can't think fast. Can't remember multiple things so well...and taking the extra time to take notes and type them up and refer to them...well, I can't get my work done in time needed. End up working nearly round the clock - early AM, late PM at home to stay caught up. Physically exhausted me to breakdown point. Question is - what to do? How do I convince folks I need a different type job? How do I educate them that the effects of chemobrain on me are very real? How do I go about finding one when the only jobs I'm really qualified to do are the ones I can no longer do? I have 2 weeks to figure it out.
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Thanks ladies, for all of your posts. I don't feel quite so alone now, I just wish there was more information out there about "chemo brain". I feel like it isn't as well known an SE as the nausea and so on, and so other people tend not to know about it and dismiss it as an excuse or something. I did, however, send my boss an email with an article attached that talked about scans that were done on the brains of women going through chemo that showed that certain parts of the brain just don't work on chemo. Unfortunately, he's either forgotten that, or dismissed it. Thriceblessed, I'm so sorry you are in the situation you are in, and I absolutely know where you are. That's how I have been feeling. I can't multi-task anymore. If I can just concentrate on one thing it's OK, but any little interruption or anything completely throws me and I make mistakes, can't remember what I was doing etc. etc. When the mistake is pointed out to me, I can't believe I did that - sometimes it's things I know so well, like the back of my hand. So frustrated, and feel like my bosses patience is running out. I doubt he'd be able to fire me over this (I work in healthcare, so it would look pretty bad), but he can make life absolute hell until I decide to go.
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Feel for you Deb - It is so hard to explain whats going on inside your head to people who havent been there. The fact is Cehmobrain does exist and it's clearly disabling or there wouldn't be a forum here. I think the posh name is somthing like Cognitive Dysfunction and it relates to hormone imbalance (middle-age in a week!), brain/drug interactions and Post-Traumatic Stress DIsorder which apparently at least 25% of BC sufferers get. (What, only 25%??) For you, well I think you are a hero to have worked through so far and to be tackling the high stress again. Maybe its time to be kind to yourself and take whatever allowances you are entitled to. From your boss's point of view, well he just doesn't get it does he: but if you were to leave outright, he would just have to get on with a new starter that doesn't know him at all, probably got not half your experience in the field etc. Really would he be better off that way? Really are you worse than a new starter? I,m sure you are not. Now, how to get him to see that.. maybe a few weeks off, with your role filled by a temp with no clue, would help him appreciate you a bit more. You have been through a serious illness, you are entitled to be a bit below for a while! Good luck!
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Hello,Wow, it's so easy to start thinking you are the only one, or you are just going a little nuts. I am off work right now post reconstruction surgery, but I worked this summer and, Thricedblessed, it was like you were me writing that post. I am pretty troubled about my return to the same position, but unsure how to negotiate for something different.Deborrob, I would suggest that you might take some time to problem solve. Perhaps find someone who would be a good sounding board for this or write your thoughts down. It is hard to be objective. But I found when I knew my perfomance was affecting others at work, it really helped to think systematically about the effects and to think about potential solutions for them. I don't think you will find perfect answers, but if you could come up with suggestions for your boss for getting appropriate support for you and him, it may help. For example, this summer I was not able to keep up with all the correspondence my postition entailed. It reached a crises before I could let go of the feeling that I had to do everything just as I had in the past. Once I got to the crises, I realized that people could help if I gave them specifics and if I let go enough. I had to keep reminding myself that my contribution was still helpful even if I was not working at full capacity and that it was ok to pass tasks to others when I could not reasonably do them.Best luck with your boss and decision about STD.Sharkey
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I can empathize. I went the disability route when I realized that I didn't have either the mental clarity or the ability to multitask that my sales/marketing position required. In fact, something as simple as someone talking to me when I was doing anything else created overwhelmingly frustration. But the good news is, 2 years since starting chemo, I feel like I'm 90% back to normal, and have very recently have been able to pick up some of my old business again, which I have the luxury of going back to because it's a commission-only situation.
Interestingly, our CPA, who was dx'd with another type of cancer about a year ago, reports having to step back from his practice due to the same issues (mistake-prone, inability to concentrate, easily frustrated by multiple stimuli) -- and he didn't have chemo, just radiation. He and I have talked about it, and he theorizes that it's probably due as much to stress as to something chemo is doing to our brains, which makes sense in his case.
There's a great thread here that I think will give you some laughs and make you realize you're not alone! It's called something like, "You know you're a cancer patient when...," and is full of chemobrain or chemo-tard (love that term!) lapses.
Good luck whatever you decide to do, and be assured the condition, as frustrating as it is, is almost always temporary. Deanna
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I say if you have an option for STD, go for it. At least that is what I am doing. I figured I have paid into it, PLUS supplemental disability coverage, for almost 20 years and if having BC/chemo/surgery/radiation/ isn't a reason to take advantage of STD, then I don't know what is.
Colleen
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Hi,
Chemo brain is a topic I know quite a bit about (I went through it and I've coauthored a book about it) and I have a blog on it. Deb and everyone, please feel free to visit my blog where you'll find a lot of information that I think may really help you. I also have experts in the field of cancer and cognition who write guest blogs and answer questions when followers write in. In the last few weeks I've started a series about how chemotherapy affects the way we make decisions, multitask, concentrate, retrieve words, and process information.
I think the blog will answer many of your questions.
All the best to everyone.
www.YourBrainAfterChemo.blogspot.com.
Idelle
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http://www.cancerandcareers.org/women/working/
http://www.cancerlegalresourcecenter.org
Hi Deb
I can't address chemobrain. I have had radiation and the last two weeks I was dragging. Plus it was mentally exhausting having to go to treatment every day.
If STD is an option, I would consider it. (I was able to work from home during rads. Nap from home may have been closer to the mark!)
Note that cancer is considered a disability under ADA. (If you work at a very small office, ADA might not apply, but over 50 employees (don't quote me), I believe it does.)
Your HR department is responsbible for ensuring your supervisor is acting in accordance with company policy and the law. If you need clarification, ask for their help. Merely having a meeting with HR may do wonders for your boss' understanding.
Eariler this year I attended "Balancing Cancer & Careers" a free seminar held at Loyola Law school. I found this very helpful in terms of understanding my rights under FMLA & ADA.
The seminar covered health insurance options, employment rights and protection and government benefits. You can attend the online/teleconference version of it (also free) on Sept 14. In the interim, see the above sites. If you have a specific question, the Cancer Legal Resource may be able to help.
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Thanks Idelle and EnglishMajor for the good reading material. I hope I would never have to resort to legal recourse, but it makes me feel better to know that it is there if I need it. It is so disappointing that people who, in the beginning, pledge theie support etc. etc. end up being so insensitive and not understanding. I think one of the problems is that the treatment and the aftermath goes on for such a long time. I think my boss never thought about the length of time this thing takes, and about the SE's afterwards that can go on and on.
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deborrob,
English Major offers some excellent advice. I have to say, when I read your post and you said your boss wanted you to work through it if you could...I was very taken aback. Now the internet is not one for true translation
but it worried me. I have always worked for larger organizations, and there are very clear lines when it comes to work and medical issues. It sounds like you have gone beyond what you can do for others, and now need to take care of yourself. Chemo brain is well documented.
It is very sad when someone's pledges of support are conditional. I'm sorry you are having this experience, and it seems like he has more of a brain block than you. My chemo brain was wordfinding, and it's quite a bit better 5 months out. I used my FMLA (16 weeks),was granted an additional 4 weeks. I qualified for STD and am on a return to work program with my LTD due to fatigue. I work 20-25 hours and they (LTD) pay the difference. I wish you the absolute best! (do you have Human Resources?)
Please let us know how you do,
traci
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