Big C - taboo subject: I was just... - SHARE Metastatic ...

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Big C - taboo subject

Mindysooty profile image
36 Replies

I was just wondering if anyone else had experienced other people's adverse reaction to talking about your condition. Everyone is different and some people don't want to discuss it which of course is absolutely fine. I dont tell everyone but Im open with the people I work closely with. However, someone told me one of my Managers at work had made a comment that I shouldnt be telling people. It really upset me because I've been trying to be sort of matter of fact about it (Im far from that really its kind of a defense mechanism) and dont really see why it's a problem. If I think someone seems awkward I dont mention it to them but most of my work mates ask me so I tell them. Im usually quite feisty and wouldnt let it bother me but for some reason this really got to me and made me doubt myself. Has anyone had anything similar?

Thanks

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Mindysooty profile image
Mindysooty
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36 Replies
nstonerocks profile image
nstonerocks

I made a mistake and told too many people at work. If I had it to do over again I wouldn’t. Some of the administrators greet me like I’m a corpse. That bothers me. God knows what they say about it behind my back. If you are bothered by this persons reaction, tell them. If anything having this disease frees us up of worrying about the small stuff. Don’t doubt yourself. Stay strong. Follow your heart.

Mindysooty profile image
Mindysooty in reply tonstonerocks

Ah yeah, I wouldn't like that either. I certainly don't want - or need - pity. I do need support though and I've said all I ask is if they're feeling ill let me know and I'll go sit somewhere else away from them. I'd like to go and tell the lady in question but it might make it awkward for the person who told me - wish they'd not said anything really because it didn't serve any useful purpose. Also she's a Director of the law firm I work for so I daren't. That said, she can't exactly fire me can she lol. You are of course right about not worrying about the small stuff and yeah, in the grand scheme, who cares what she thinks! Thanks.

nstonerocks profile image
nstonerocks in reply toMindysooty

There’s the Americans with disabilities act that the head of your law firm should be well aware of. 😉

Mindysooty profile image
Mindysooty in reply tonstonerocks

Im in UK but we have similar laws . 😆 x

kearnan profile image
kearnan in reply tonstonerocks

That has nothing to do with what she is stating. She is going around telling people at work and telling people if they are feeling ill to tell her so she will sit somewhere. The disability act has nothing to do with what she is posting. That is so not necessary as so many stage iv women I know are working as teachers and as nurses. You may be making people uncomfortable and yet they feel they have to listen. People have their own problems also. People know and that is enough. They are coworkers, not friends, relatives or therapists. If a close coworker asks, tell her in private but not a good idea to expect your coworkers to be the support system you need. I also worked as a legal secretary for many years.

Mindysooty profile image
Mindysooty in reply tokearnan

Hi,

As per my other reply Im not 'going round telling people' , Im responding to people's queries. Also its part of my DSE assessment that co-workers advise if they are ill. The reference to employment law is in context with the thread.

Thanks for your input.

Regards

nstonerocks profile image
nstonerocks in reply tokearnan

Ouch!

Godbeforme profile image
Godbeforme in reply tonstonerocks

stupid ignorant people! sending love and prayers! <3 xo

Hi Mindy,

I don't see why your manager thinks you should keep your illness to yourself. It is up to you if you want to talk about it or not, and as you say you are mindful of people's reaction if they do not want to discuss it with you. You just want to know if people are ill so you can avoid them or ask for support if needed. I can see how it might be awkward to broach the subject, as that would mean the person who told you about your manager's reaction will then be exposed. It might just be better to let it go. People should not be treating you any differently because of your diagnosis.

I don't want people's pity either, but I am happy to talk about it from time to time, just not every conversation I have with people.

Sophie

Mindysooty profile image
Mindysooty in reply to

Yeah exactly that. If someone asks then Im open. I dont mention it otherwise. Theres far more things to talk about at work 😆. I just have to be a bit more thick skinned I think and have a 'so what' attitude. Like you say its up to me who I tell. Thanks. X

Barbteeth profile image
Barbteeth

Hi Mindysooty

I’ve had a similar situation...my husband decided to tell all and sundry about me after I was diagnosed...I fell out with him over this as it’s not his business to do so

People at work had to know as I couldn’t look after my patients and had to retire and I know some of them feel uncomfortable when I go in and they tend to avoid talking about it which is good

However my next door neighbor gives me the ‘look’ and says things like ‘you poor thing’ and ‘what treatment are you on?.. is it working?’...stuff like that..so I avoid her or just say I’m fine but I hate it

If I was you I would try and ignore what the insensitive person said..tricky I know..but they just don’t get it

Barb xx

Mindysooty profile image
Mindysooty in reply toBarbteeth

Oh god my dad did that. Told everyone in the village. I was fuming but he's 86 and I think it was his way of dealing with it so I bit my tongue.

Yes I just need to rise above it don't I, there's more important thongs to worry about really. Thanks x

Barbteeth profile image
Barbteeth in reply toMindysooty

Yes just put yourself first...if people can’t deal with it that’s their problem....difficult though if you’re a sensitive soul like I am

All the best

Barb xx

Stage4Gir profile image
Stage4Gir

I had the opposite with my boss. I’m in a very small company about 15 people and he was chafing at the bit to tell as he said he didn’t want secrets. He did ask if it was ok to send an email and I didn’t really caress I said yes although I could have just told people myself. He basically said I had a serious illness and I would be transitioning out of my job in 1-2 years and that if anyone wanted to talk to me personally I was ok with that. I almost laughed. The 1-2 years was based on average prognosis but seeing it in writing was a little weird. He has been great about all the appointments though and even cut my hours so that I now leave at 4 instead of 6. That was a godsend. The employees were all concerned but now that everyone is used to it they really don’t treat me any differently other than offering help if I need it. My boss said he wanted them to have the opportunity to support me.

Mindysooty profile image
Mindysooty in reply toStage4Gir

Wow, I've never heard of that approach. Im a Manager and would never even think to do that; it's your news to share and with whom should be your choice - as long as you were ok with it I guess it's ok but doesn't sound like you had much choice. I have to say I'd have been mortified at the 1-2 years reference. No one can predict these things and god willing we'll all have many years to come. Happy for you that you get to finish at 4, those couple of hours make a world of difference to you. Also re the appointments, we do have rights and should be allowed to go without fuss but appreciate in reality, some businesses dont make it easy. Apart from that one blip with the one Manager/Director, my firm have been very supportive, they take employee welfare very seriously and really look after us so Im very lucky in that respect. X

blms profile image
blms

That person is stupid. You do what feels right to you! You are the one with MBC! I am free to tell everyone because I have found the more I say it , the less scary it is.! After a while I think,” no big deal!!” Fooling the brain a bit

Mindysooty profile image
Mindysooty in reply toblms

Yes I know what you mean by that. Its like you're normalising it isn't it. Its like everything else, everyone has a different take on it . Cant really believe someone would be mean enough to say it tbh. As if I've not got enough to worry about. Thanks to the support on here though Im over it. I'll rise above it. Might even tell someone while she's in earshot just to p her off 😆. Lol. Thanks and take care. X

blms profile image
blms in reply toMindysooty

Sounds good to me! After let it go

kearnan profile image
kearnan in reply toMindysooty

Don't do that. Someone told you privately what was said about you talking too much about it. She was trying to help you and if you want to be petty and let the other lady "know" that you are aware, than could be the person who told you in a bad position and quite frankly, it is petty.

Mindysooty profile image
Mindysooty in reply tokearnan

I was joking 😆

Pollingxx profile image
Pollingxx

A manger once said to me !! You haven’t had a mastectomy have you !! ( Only a wide excision sorry ) 😭

Libra48 profile image
Libra48

Hi Mindysooty... when I was diagnosed in December 2018 besides being in shock and in denial my first reaction was to tell the world! The month of December and part of January 2019 I was having test after test after test. I work for a government agency and the government shut down for a month and although that added to the stress it did give me the opportunity to go to all of my doctor appointments and not have to take leave from work. When I returned to work at the end of January I was a completely different person and made a decision NOT to share my diagnosis at work. I have decided that if God forbid I become seriously ill or hospitalized THEN I will let my boss know what’s going on. I work from home part of the week which is great. My immediate family knows and a handful of friends and neighbors know. I came to realize that as much as you explain our diagnosis people still do not understand what MBC really means. People will still ask “when are you having surgery” or will say “the drugs will work and you will be cancer free”. I have also learned to say I have advanced breast cancer. When you mention “Stage 4”, you get the look like oh my god she’s going to die soon. There are still moments where I am struggling with my diagnosis but I’m learning to take it day by day, stay positive and pray. I also thank god I found this site as it has helped me tremendously!

Mindysooty profile image
Mindysooty in reply toLibra48

You're bang on there, people don't understand MBC . To be fair I didn't until my dx. I've not had any of the pitying looks yet, maybe thats to come. I had to tell work cos of all the appointments. I also take each day as it comes. Monday and Tuesday I felt so good, really well but Ive just got up today feeling meh. Its my birthday on Thursday and Ive got a full week of meals and catchups with friends and family which is lovely but tiring and I think Ive over indulged. Have to make wise choices for the rest of the week lol. You take care now and thanks for response. X

nstonerocks profile image
nstonerocks in reply toLibra48

I wish I had not told so many people at work. Not that isnhas interferes with my job, but I too get “the look” Barbs describes from some people and I think some of them are expecting me to drop any day. Have developed a slightly thicker skin Mindysotty talks about. Not easy.

Kimr2081 profile image
Kimr2081

I think people don't know how to react and then react in an insensitive way. And the things that people have said to me - I thought really - just how big of an idiot are you. I have a friend who was told she got breast cancer because she didn't pray enough. For crying out loud, she's a pastor's wife and besides that is not why she got it. And its not like its contagious. I am really sorry they are making you feel that way.

Hang in there.

Kim

Mindysooty profile image
Mindysooty in reply toKimr2081

Thanks Kim. OMG as if someone said that to your friend. Talk about forcing your beliefs on people. Actually I'd not really thought about it like that, ie not knowing how to react. Hmm you could be onto something there. That's made me feel not so annoyed at her because she's usually ok so maybe that's the answer. Thanks for that. Take care x

Ok, I’m going to add that the ADA prohibits employers from doing what your boss is doing. It requires employers to accommodate your disability. Unfortunately employers spend efforts training about sexual harassment— when everyone knows they should keep their darn hands to themselves— but do little to train managers on how to work with employees like us. I’m retired now but my job was to navigate people through this thicket. I encourage you to look at this website about accommodations wwwaskjan.org. I also encourage you to email HR, explain your dilemma, ask for accommodations and for HR to pleasantly educate your manager going forward. Good luck.

Mindysooty profile image
Mindysooty

Ah thanks for the advice. To be honest, the business as a whole are being really supportive, it was just the one comment that upset me. Usually the Director in question is ok so I think that's what upset me more cos I thought it was a bit mean and didnt understand why she'd said it. All the support and suggestions on here have helped so thankyou so much for your response and advice. Take care x

RLN-overcomer profile image
RLN-overcomer

Greetings: Sister/warrior I was cautious about who I told about my triple negative metastatic breast cancer diagnosis. I told my closest loved ones, who were my prayer warriors. My biological ( sister/minister) ran a prayer/bible class at her job on her lunch hour. She asked people at her job to pray for me. My neighbors daughters girlfriend who I don't know, was at one of these bible/prayer meetings. My neighbors daughters girlfriend called, and asked her friend who is (my former neighbor I grew up with who use to live down the hall from me, to pray for me, and my family after their work hours. The neighbor who grew up with me now tells her mom, who still lives down the hall from me. Suffice to say I made sure I looked as healthy, as humanly possible. I put on the prescription moisturizer, makeup to take away the grey skin, eye liner to help my bald lashes, and eyebrows. I painted my nails to cover the black dead appearance. I even wore a wig that looked exactly like my natural hair would have looked before chemo made me bald. Even when I was in severe pain I made sure I walked upright like I was fine. I had the most aggressive chemo, and there were no pain killers in 2007, no CBD oils, or capsules, pills or brownies/candies. Long story short my former neighbors mom who still lives down the hall who I exchange pleasantries who at the time I thought knew nothing about my diagnosis sees me, and she let out a loud gasp. You would have thought I died and fell in her arms. There was a long awkward pause, and, she finally said are you okay. Again I thought wow who said I died. Was she looking at a ghost image of me, or was I a walking corpse. Small world huh. This same neighbors other daughter who was also a minister, who moved out years ago, was diagnosed with breast cancer unbeknownst to me, and had a recurrence. I was told by my next door neighbor who I am close to, my next door neighbors daughter who was friends with my (neighbor/minister) who was diagnosed , and from my sister who ran the prayer bible class of her diagnosis/prognosis. I found out 3 weeks before she went to heaven a year, and a half ago. My former neighbor who was also a minister, who is now an angel in heaven didn't want anybody to know except her closest loved ones. My oncologist back then said I wouldn't live to see 2009, even with the aggressive treatment. Who can explain why I am still living in this NED body, and my minister/now angel is in heaven.. I believe ( DR. Lord/God ) works in signs, and wonders. Jehovah Rapha, my/our healer, and deliverer. Here or heaven God willing. For now I am going to enjoy the here, and now until hopefully heaven is ready for me. Forgive me, I write books XoXoXo

msmuffintop profile image
msmuffintop

yes I made the mistake: I thought if I were open about my condition I could circumvent people getting weird on me. Big mistake. I have since gone completely the other direction, I don't talk to anyone except my most inner circle about my BC.

Being open created a floodgate of people trying to "treat" me, telling me to drink carrot juice or do yoga to "cure" my Cancer (People without a shred of medical education.) In it's worst state people getting judgmental about my treatment choices, saying things like if I really wanted to get better I'd go to Mexico or I would smoke cannabis etc. etc. and also people feeling the need to tell me that if they had Cancer they wouldn't take treatment.

In retrospect I realized I don't want to talk to anyone except my doctor and my partner and one of my many friends about my treatment. I don't even talk to my son or other friends or family members about my treatment choices because I don't need their insecurities to become my problem

in reply tomsmuffintop

Hi,

It is not an easy decision to make. But the thing is once people know it is out there and you can't take it back. So my friends do not know that my breast cancer is metastatic. I don't talk to them much about it, but when people ask when cancer treatment is ending I tend to say it is ongoing and leave it at that. I have thought about being more open with people, but I can't bring myself to do it.

Sophie

msmuffintop profile image
msmuffintop in reply to

"ongoing" That is a very good way to put it. I will use that from now on, because, yes, people ask me "Aren't you done?" and "Are you all better now?" "Cured?" and awkward stuff like that. . .

I appreciate you talking to me and giving me advice. I find it hard to find people in my tribe. People who understand. You're a star

in reply tomsmuffintop

You're welcome! I just find it so tiring trying to explain things to people who don't understand what this disease is all about. I know so many women who have recovered from primary breast cancer and even they don't get it, so talking to them can be just as hard as talking to people who have never had cancer. One of my friends has a pink car with "survivor" plastered all over it.

kearnan profile image
kearnan

I kind of agree with the manager. If you have one or two close coworkers, that is one matter but if you are telling everybody they may not really want to hear it. People have their own problems or they may have someone in their family with cancer or it may scare them to think they may get it. If you feel the need to discuss, (and I mean this in a nice way), go to a therapist. And there may be people that have complained saying I really don't want to hear about her cancer but I feel bad saying anything to her. Not that they are unsympathetic but because they have their own problems.

Mindysooty profile image
Mindysooty in reply tokearnan

Hi

No I dont discuss it with everyone, I wouldnt dream of it, but if any of my team have asked me about it, then Im open. Quite often one or the other of them will say 'how's your treatment going' or 'how are you feeling today'. Im off sick at the mo and some of them have messaged me to check in with me bless them. There are a couple who havent said anything and I wouldnt raise it with them as I think like you say, for whatever their own reasons are, they obviously dont want to hear and of course thats absolutely fine too, I totally respect that.

Thanks for your input and perspective.

Tam-56 profile image
Tam-56

This is such a huge issue for us! Why does it have to be this huge dark cloud looming over our world. We’re trying to live our lives the best we can with what we have today for heavens sake! It does not help having a stigma attached to our diagnosis. Ok, let’s say I am a diabetic. I have a chronic disease, I take responsibility for my illness by taking meds and seeing professionals to treat my illness. Diabetes just doesn’t have the same connotation as stage 4 breast cancer. Meds are getting better, so what if we take a little brown pill every day and may need to rest or shorten out work day. I’m just tired of ppl giving me that look or avoid me altogether because they don’t want to “go there”. I’m tired of family members treating me like a fragile crystal glass that will crack if they speak too loudly to me! Ugh I hate it ...just treat me like a person. This is huge so what if I’m one in eight women who will get breast cancer...there are no guarantees in this life to anyone... I just want to scream GET OVER IT ALREADY! Sorry about the rant..... 🥺

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