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Being open about cancer
Sadie12
174 Posts

As I find myself heading back to employment, I am questioning myself about how much to share or not about the reason I've been off for the last 18 months. Management knew that I was leaving because of cancer, but many of my colleagues don't know why I was off, or if they do know, the don't know much, other than I had surgery and chemo.

So, this is a general question…

Do you think it's better to be open (without graphic details or too personal details) about things you are comfortable sharing or best just to answer questions vaguely or deflect when the conversations come up?

I'm not specifically talking about the workplace, but even with non-work people.

Part of me thinks talking about cancer makes it less ‘weird' for people…like those people who moved away from us when we were going through our cancer fight. I also don't like putting ‘shame’ on having cancer…is that what we do when we don't name it? That it can still be talked about in hushed tones…especially gynecological.

I read a quote today…"When we recover loudly, we keep others from dying quietly".

No judgement and I don't have the answers. I am trying to answer this for myself.

Sadie

30 Replies

Hello @Sadie12

Such a great topic - thanks for getting the conversation going. My gut is to do what is most comfortable to you. Give as much or as little as you deem appropriate.

For myself, I was super open right from the get-go. i had been off for a few days when I heard my diagnosis. I phoned my manager and asked her to share it with the office. I then kept those who were interested, updated via emails througout my treatment. So when I went back, I didn't really have to say much - they were all just happy to have me back ( I did not work for CCS then )

What I found was that people thanked me for being so open and in turn it gave them “permission” to talk openly about it too. Since then, so many people have confided in me and felt they had a better understanding of what it means to go through cancer.

I love that quote you shared. I am sure you will hear from others but it seems like you are leaning towards sharing - how much is entirely up to you.

There is a great website about returning to work after cancer that you might find useful.

Here is the link: https://www.cancerandwork.ca/

Let us know what you decide to do.

Lianne

Runner Girl
2730 Posts

@Sadie12

It's a tough call. Best to do what you feel you are most comfortable with.

I share. I want people to know and leave the door open if any of them need to have someone to talk to because of a situation in their own lives. Much like I do on this site.

Runner Girl

@Sadie12 I have been quite open with people. If people had questions I would answer them. I think when I went through chemo and no hair, I think every one knew then. It's weird though, some people (not all) when I told them about my breast cancer diagnosis, they would look at my boobs. I was tempted to say, “yes, they're still there, just different”.

I even posted on my work's Facebook social club, this way everyone gets the same information and you don't get a bunch of the same questions over and over again. I find now that I can't get away from hearing the word “cancer”. I hear it in conversations and there are more tv characters then ever before. I think it's important for people to know that there has been a lot of medical advances and it's not your grandma's chemo anymore. Breast reconstruction I think never happened in the past.

I also know that there's nothing I did that caused my diagnosis and there's nothing I could have done to prevent it. It was just bad luck, so why keep it quiet. On Wednesday, I had a woman come up to me during the local hockey game intermission. She had just recently been diagnosed as having breast cancer, her surgery was in January. She is still in the overwhelmed stage and had some questions. If I hadn't been open with her in the past, I wouldn't have been able to help her now.

@Sadie12 I even have a t-shirt that I have worn out in public.

cc2af88952c0ce2489f973eda18368f0-huge-br
supersu
1108 Posts

@Sadie12

congrats on return to work….so exciting for you!!! I could.not.wait. to get back….ha ha ha
(then a few months in, I wished I was off again 😂)

I work in a health care setting, and actually had my mammogram, U/S, biopsy, wire placement at the clinic where I work.
so obvs, some folks knew exactly where I was and what I was doing. but my diagnosis and treatment all happened thru COVID, so I was one of many who were off during that time.

I shared with my direct team…we actually had a #notdeadyet BBQ after my radiation was finished.

it is easy for me…I wasn't offered chemo, so I look the same, and really it rarely comes up.
if someone would ask me directly, I would talk about it all.
hasn't happened yet!

you do you. whatever you are comfortable with is the ‘right’ way.

enjoy your return to the workplace…that is a huge milestone. congratulations.
su

#returntowork #realtalk #lifeaftercancer

Cedar
41 Posts
As others have said, this is a personal decision, everyone has to do what's right for them.

I stayed away from sharing anything on social media, but talked about my cancer openly with friends and family. I had endometrial cancer, with minimal symptoms, just an annoying discharge, no pain. I had it checked out, it was early stage, so I had a complete hysterectomy & 3 rounds of Brachytherapy radiation. I am currently cancer free. I share my story because if I can encourage other women to listen to their bodies & get things checked out if something doesn't seem right, rather than waiting or ignoring symptoms, then maybe others will have the fortunate outcome that I have.
Sadie12
174 Posts

@supersu …love that #notdeadyet BBQ…I have that dark sense of humour

So, on the topic of return to work. I was always looking forward to getting this part of my life back…signifying that I had won the battle and after feeling so isolated at home (COVID, baby, cancer). I like my job and only work part-time.

I hoped to be back mid-February, but it didn't work out.

I am due to start back graduated at the end of March. At this point, not being involved in discussions between my employer and my LTD rehab consultant, but seeing some of the emails between them…I am no longer looking forward to it. I won't vent here, but this has probably ruined my relationship with my management team. I've been proactive and asked for a meeting on Tuesday to try to resolve/repair/go forward. I have some accommodations to ask for that I feel were not represented by my LTD person…which means I will need to discuss some of my new realities.

Sadie

@Sadie12

I've been pretty open about my cancer. Guess you can't get much more public than having a mugshot plastered all over the back of a bus? But a couple of thoughts. I had two very different work situations.

One was as a first aid attendant on a high risk job site. I regularly led the stretch and flex at the morning toolbox meeting. I warned the superintendent and then I just made a blunt announcement. #notdeadyet . I invited questions and only had one person tell me I should cut sugar out of my diet. I did it to short circuit the rumour mill. I did not need anybody questioning my ability to do my job. When I went back to doing temporary fill in stuff, I played it by ear. Some employers knew, others didn't. Unfortunately covid put an end to that work.

The second was my web clients. These folks were much like friends. My primary concern here was to make smooth transitions to new web designers. So I was open about what I knew and have successfully moved all of them to other folk. I have one client left.

I was on the other end of this type of technical transition when a client's graphic designer died suddenly and left no instructions or access to a massive collection of graphic assets. His widow wanted to help but all she could do was give me access to the physical equipment and let me recover the files. Massive intrusion and hassle. That taught me to leave clear instructions in case the proverbial bus ever happened.

One last thought - be clear about what your “Best Alternative to a Negotiated Agreement” is. Also known as the bottom line. Where are you willing to negotiate and what is not negotiable.

Angus

Sadie12
174 Posts

Thanks for that, @WestCoastSailor . Mugshot on the back of the bus, eh? You really are the poster boy then?

Otterjam
99 Posts

@Sadie12 this is such an important dialogue. I relate to @supersu - I had a gradual transition back and trusted the process (I had nothing to compare it to) but reflecting back there was some real trauma and challenges returning. I was overwhelmed and - I now understand - dealing with some pretty heavy mental health/ cognitive stuff (it’s embarrassing how emotionally raw I was). I don’t think I was ready; but the isolation was unhealthy and I wanted to be back with my colleagues, team, at the office. I disclosed everything to everyone but I think that was my own healing process. I don’t think my executive decision-making was fully switched on so I made some poor choices - I did not always properly ‘read the room‘. There were some interactions that were very weird/hurtful/insensitive/ cruel, but some that were wonderfully supportive. Some people did not want to know or help, some didn’t care and said some pretty ignorant things, some were rockstar cheerleaders and advocates. I believe there was some gaslighting. So I think each case will be different and you will have to judge accordingly, which can be hard if your brain isn’t working 100%. Executives and managers may only be thinking of the ‘legal’ or ‘HR’ stuff, approaching you from that perspective. Some will marginalize, some will respect. It’s a mixed bag really, so just hoping for you that you are prepared and emotionally resilient to cope with whatever comes your way. I wasn’t. I feel some people’s negative actions and words negatively impacted/ delayed my recovery/progress, and I’m still healing from that. I would approach things differently now, if I had a do-over, but obviously I’m praying that opportunity doesn‘t present itself. Not sure if any of these sharings help. This is a really difficult topic for me personally. I love my job, the organization I work for and it’s leaders are really caring people; most of those few toxic individuals have since left the organization and with COVID I was able to avoid running into those few remaining others. Silver linings with working from home. Thanks for this discussion And heartfelt congratulations on this amazing milestone! Best of luck.

Sadie12
174 Posts

@Otterjam - Thanks for sharing. It is very helpful to know that others ‘get it’.

Regarding ‘trusting the process’, I was, I am not. I realize that my LTD insurer has one priority, my employer has another and I need to advocate strongly for myself so that my return to work can be a positive one…or at least, not a damaging one.

Doing this while emotionally raw is tough. I have prided myself on being incredibly strong during some pretty difficult life events and remaining strong during my ‘Cancer with little kids during Covid vacation'. Isolation certainly was unhealthy. Now, I find myself practicing my ‘speech’ prior to my return-to-work meeting, so that I don't lose my professionalism and start blubbering. I think by talking about it, I am looking at things more objectively, so hoping that I can pull it off.

Regarding my co-workers…I think ‘reading the room’ is a good rule. I think I know my co-workers enough to know who to share with, if they open the door.

Cancer is such an emotional journey. Thank you again for sharing.

Sadie

Otterjam
99 Posts

@Sadie12 I am cheering for you! I hope you accomplish all you set out to do. I tried advocating for myself, but in some cases this further isolated/marginalized (by those few odd ducks, too young/ inexperienced in their respective roles maybe or compassion fatigued). I blubbered in unpredictable fashion in front of different people. Always in front of my manager (why???), which was equally humiliating and frustrating. Usually I’m pretty controlled. My doctor tells me it was the chemicals in my brain and hormones at the time (treatment sterilized me), which were out of control after treatment. I was not allowed hormone replacement therapy (they worried about a secondary cancer forming). I was riding things on my own. it was a pretty scary out of control time, which some understood. Others did not. I wish all the best for you with your ‘speech’. My fingers and toes are crossed for you. You‘ve got this!! Your strength and determination is inspiring!! ❤️

Essjay
1956 Posts

@Sadie12 congrats on recovering and being ready to go back to work 🙌

I was open from diagnosis - I’m a senior manager in my workplace so my absence for appointments was noticeable and it was easier to explain what was going on than to hide it. Plus I would never remember who knew! I was also worried about the hushed conversations behind my back (seen that enough times).

Being open made it easier to visit for lunch/birthday celebrations through treatment and my return without hair was less of a surprise. I roped my colleagues in to help me fundraise for Run for the Cure - running was part of my recovery (hadn’t run since high school)…

I shared my diagnosis and treatment via Facebook with family and friends. I had multiple messages that it demystified the process of diagnosis and how treatment affects you for people, so I believe I did the right thing.

How much detail - well I would just say ‘I’ve had breast cancer - I had surgery, chemotherapy and radiation to make sure it’s gone’. Beyond that if people asked I would tell them. Most didn’t, although I had a few questions from colleagues who had been through it themselves around side effects, whether I was on hormone suppressing therapy (I’m not) etc, and I discovered a few new friends among the cancer survivors…

halfass
19 Posts

Sadie: I like to just be open about what I'm going through. Why not? Then if anyone wants to ask me about it, they know it isn't forbidden. If there is someone around me who has a similar issue, they will feel more comfortable to talk about it. Also, I had some nasty surgery right beside my anus, and now, I can't stop my “toots” from just happening, so I think it is important for others to recognize that I can't help it, and to have a sense of humor about it. I call myself half assed all the time so no one needs to be uncomfortable about what they can say to me. I never did understand why people want to keep health issues secret. (unless it affects their workplace treatment- which is horrible if that happens, and shouldn't be an issue) Of course I don't share other's struggles unless they are OK with it, but I always tell my friends that my cancer is not a secret and they can tell anyone they want to. A few weeks ago, my kids and I were joking about “using the cancer card”. LOL. Sense of humour is sooooo good for coping.

J1f2s3
42 Posts

Hello @Sadie12

I’m retired from the Navy, and no longer work,with that said I volunteer with a lot of groups. I got cancer during COVID. My wife was attending a Legion meeting and I told her she can announce that I have cancer for the reason I was not there.

My family and friends were also told,with updates as I progressed through my journey. So when I attended a meeting and I was a bit fuddled all were understanding. Speaking up right away has helped me be real, and a couple of people in my community ( live in a small town) have come forward with there cancer to talk with me . I think Whatever your comfortable with telling about you do it.
Jeff

margareth
23 Posts

I am over 70 and retired.. I would point out that you are the only one who knows your workplace culture… I have told only those closest to me… yes there are some know it alls out there… some have informed me that my cancer was caused by my having vaccine… They are no longer on my Christmas card list.

chrys21
153 Posts

Hi @Sadie12

congrats on returning to work! It is a big step. I went back gradually - beginning with some weeks at half time - and then some vacation. This allowed me to ease up to full time over a couple of months.

my manager knew I was away due to cancer but I only told a few close friends at work the details. When I returned, I only shared with a few people and now it’s become a non issue.

in my personal life I still have family and friends who don’t know. I’m a very private person - I found it hard during COVID to share - I’ve been sharing a little as I begin to see people.

I am realizing that this is a part of my life now and I want to be more open about it so that I can be supported and support others. But it’s tough after keeping it so close for so long.

this has been my experience so far.


Sadie12
174 Posts

Well, last week, I went in for a Return to Work meeting that I requested. I had to advocate hard to get some schedule accommodations from my employer who I have worked for for 10+ years. The meeting was over an hour long and I was exhausted and emotionally drained by the end. I was able to maintain my emotions, but at the end of the meeting, I did calmly tell them how difficult the past 18 months had been, how hard I had worked to get to the point of returning, how I had been excited about returning and how I was floored by their last minute major change to my work schedule (that I had been the same for 10+ years) emailed to me without any conversation. I needed them to appreciate that.

So, I returned to work for a short shift today. My supervisor seemed genuinely happy to see me, even after I had spoke my mind. My workplace was quiet today and I was able to do things like clean out 2850 unread emails, check out the new software changes, etc.

No one except my supervisor brought up my reason for leave in our chats. My co-workers welcomed me back warmly.

COVID has changed my workplace (public library) and how co-workers engage with each other and with our patrons. I hope it gets back to a vibrant community hub that I enjoyed working at.

@chrys21 …We are similar. I told very few people that I had cancer early on, really only people who I needed to support me. I had left work for another reason actually days before my cancer diagnosis…so most people believed I was off for another reason. I did not want the ‘word’ out about my cancer at the beginning, because I was in the middle of a business\legal decision that may have had my cancer sway the outcome against me (I live in a small city, people know people). And with COVID, I really didn't run into anyone while I was bald from chemo…plus, being winter, I would have had a toque on anyway. I am way more open about it now when it comes up…but, it never really comes up.

Sadie

Essjay
1956 Posts

@sadie I’m sorry they made it hard to go back! That shows a real lack of understanding…

My return to work was fairly casual - the insurance company was in charge and we agreed hours per week over 12 weeks and we checked in every 3 weeks to see if it was working for me. I found I needed my rest days and weekends, and I was definitely pushing myself, but it felt good to make progress and feel stronger. I rewarded myself with a vacation when I returned to fulltime.

My boss was great. The only push back I had to give him was when he wanted me to start a time-heavy project straight away when I was back. I asked if we could delay until I was back fulltime so I could balance my work better. He smiled because he’d forgotten I was only there part-time and we agreed a new schedule.

With hindsight, I’d have liked longer than 12 weeks to ease back in - this would have given me better quality of life and work-life balance but it did work out.

Good luck with the next few weeks - rest up when you need to and if it’s not working do speak up. Best wishes, Essjay

Sadie12
174 Posts

Thanks @Essjay

How great that you rewarded yourself with a vacation after getting through your return to work.

I had my second short shift yesterday. No change to time length, but I had a lot more interaction with people. I came home exhausted this time. Today, I rest.

I am hoping that my stamina increases…perhaps losing the social anxiety gained during being at home with cancer\COVID. Part of it, for sure, is the stress of being back amongst people, in general and the added stress of potential COVID exposure.

It's a good time to get ‘out there’, though, with spring in the air!

Sadie

Skye2
223 Posts

@Sadie12 @Lianne_Moderator

Lianne and I are twins! That is exactly my story as well…. I was very open, but I’m also an OR nurse and had 2 of my surgeries in my own OR, so hard to hide it! I also wear my heart on my sleeve, and couldn’t keep that in if I tried! I needed and wanted the support of my work family, and they were there in spades for me.

Its entirely your choice as to what you are comfortable sharing. As with most work places, the employer is entitled to know you will be off, but not your medical history, so it’s up to you how much you disclose. Having said that, if you have chemo and lose your hair (like I did), it’s hard to explain a bald head, or super short hair when you go back!! Ha, ha!

Anyway… no right or wrong answers here. Do what feels right for you is my 2 cents worth.

Sue

Skye2
223 Posts

@Sadie12 @Essjay

OMG! My hospital / insurer gave me such a hard time about my return to work. I was off a year, 2 surgeries, 5 months of chemo plus radiation and they wanted me to start back on 8 hour days and be back full time in 6 weeks. I got a letter from my oncologist saying start at 4 hours and work up gradually… they let me work 4 hours for the first week only, then I had to go to 8 hours. They refused to let me work 6 hours in between, and I knew I would crash , which I did… ( we are not allowed to sit in the OR, and having to start back at 8 hours on my feet caused me so much back and leg pain it’s not funny. I’m also 60 years old, and have worked as a nurse going on 38 years now).

I did it, barely… I have to have an Epsom salt bath when I get home, and sleep pretty much 10-12 hours, but I did it. (I also had my right kidney out for kidney cancer 10 months before being diagnosed with my bilateral breast cancer).

They also made it clear I had no vacation or sick time until I was back full time, and if I have to be off anytime in the next 3 months related to my breast cancer- it’s back to disability, not sick time. I will also need to save my vacation time for medical appointments. There was literally no accommodation at all. My coworkers are lovely, but my employer/insurer not so much….

Sadie12
174 Posts

@Skye2

I am so sorry that you have had to go through this…and you work in HEALTHCARE(!), no less. How is it that the health care industry can be so ruthless when their own employees need better care in the form of accommodation?

I feel like a whiner, advocating for my accommodations, after reading your story. My job is nowhere even close as demanding as an OR nurse's must be…either physically, mentally or emotionally. I am glad that your ‘work family’ are there for you.

Sadie

Skye2
223 Posts

Hi @Sadie12

…not to worry…! I wish I could have taken it slower, but what can you do?! My saving grace is I plan to retire this time next year. I love my job, but like any large institution- hospital or otherwise, we are simply numbers to them. It’s like all my nurse coworkers say, we love our patients, love our work, it’s the admin / management and bureaucracy that kills us.

I’m thinking I might try some other kind of nursing part time after! 🤷‍♀️
I hope you are well taken care of at your work☺️. If you can take it slow, do!!!

Here’s to ALL of us, who rise above our cancer, our treatment and our limitations! We are a tough bunch!💪❤️

Zuma9+
17 Posts

i noticed during treatment quiet time in my house… cards and flowers arrived..no door bells . i was useless during chemo. allergic reactions mean i had to have benadryl and other meds to help. Left me very tired and out of it.. than radiation was every day .. so people around respected..and after would say good things and ask good questions. the ones who backed away i found out were fearful . Like it was catchy. i understand.

some want to know everything some want the word" fine" even amongst my children. Oddly enough the males want details on how the you and your body respond… could be the use of those big machines..not sure. my one daughter nothing..no boob talk.. respect..there wishes.

so yes you have to read the room as they say here. at the cancer centre..same .. some would help me get it going at the beginning of the treatment.. some turned away like i had spinach in my teeth…

at the end some would share others just stared at my question on how many treatments? like none of your business….

had a phone call from “ the canada tax” man over a tax thing and within minutes i was sobbing … couldn't answer the questions properly..could't talk… my husband had to take the phone. with my permission.. to help.

eventually i settled enought to talk and he was so kind.. his mom was going thru the same cancer procedures in ottawa. same.. and he understood and in the end it was me who had to get him off the phone.. but every time he would say something kind i would break down sobbing…. poor guy…

Cynthia Mac
3876 Posts
Rhetorical question:

What kind of empaths must we be when, in those times where WE break down sobbing with a stranger, we feel badly for THEM!?

Just a drive-by observation.

PS to Skye2‍ - I like your plan - there are so any people who need help in their homes with medication management, injections (I’d be one of of those), etc.
Zuma9+
17 Posts

looked up empath..my new favorite word.

at that time i was very emotional and sometimes a stranger gets the brunt..and for some reason sharing with a stranger sometimes is easier.doesn't come back to haunt you a family thing.

strangers in the waiting rooms or in the chemo treatments were always kind and i hope i reciprocated.

Sadie12
174 Posts

@Zuma9+

Good point, that sharing with a stranger doesn't come back to haunt you like family.

I'm not a big sharer (outside of this safe forum or with cancer-buddies)…but when I do get to have a very appropriate but personal conversation with a stranger, I do consider it a gift given and received. We are all human.

Sadie

PinkDaze
7 Posts

@Sadie12 First off, congratulations for hesitating before you responded to your supervisor. Since my recovery I seem to be a lot more vocal with my thoughts and it's often not good. 🫤

Secondly, I am heading back to my gradual return to work in a couple weeks and was thinking the same thing. What do I want to share? I'm not friends with these people. I work with them. And how do I respond when they make those light uncomfortable remarks because they don't know what to say?

I hope things have been going smoothly for you and you are not feeling too fatigued. You're number one, it's just a job.🤗

Sadie12
174 Posts

Thanks @PinkDaze … that's what we learn…"I am number one" :)

I have a very gradual return to work and sometimes feel indulgent about it. However, I just did my 2 short shifts in consecutive days and woke up feeling stiff/sore. Glad that I have this morning free to do yoga. I am thinking that it has more to do with emotions than actual physical output.

Going back to work is such emotional work. I took a Return to Work program with Wellspring - I highly recommend it for anyone in Ontario to take BEFORE planning your gradual return.

On the last day, one of the participants who had just started back to work said (I paraphrase) - that she has a lot of anxiety because as you go forward from the cocoon of cancer care/self care/in the process of recovering to actually taking that step back to your work, you get busy and focussed on work and in your mind, you think…WAIT, I can't take my mind off my cancer or it will sneakily come back when I'm not paying attention. That REALLY resonated with me.

I tried to explain this to my husband last night…he couldn't get it, of course. And truly, I didn't cause my cancer by not paying attention, so it's not logical. But, that is our brain!

As for comments from coworkers…most say that they really missed me and glad that I am back. Some say how are you…and the ones I can joke with, I say ‘Happy to be here!'. Some people will keep asking…'are you okay?'. I've finally just stared them down and they get the hint that they can stop asking that because it is annoying.

Don't worry, @PinkDaze - work and the people get familiar again very quickly. Best of luck to you as you prepare to get this part of your life back!!!

Sadie

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