MBC and working
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harrow,
Thank you. We all handle mbc differently. Though I have chosen complete openness, I have absolute respect for each person’s right to medical privacy. The other piece about working is how you feel about your job. I adore being in the classroom and I find children to be simply amazing. My relationship with my school community, and small school district, spans more than 30 years and I knew they would be kind and supportive. That’s why I still sub but again, we are all different.
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harrow, you’re still basically a newbie, having been diagnosed less than a year ago. It shocks the body, the mind and the emotions to receive such news. It takes time to adapt to a “new normal”, and things don’t ever go back to before mbc. Definitely, I looked at everything in my life in a new light when this happened to me. Outwardly, it may have looked like I was carrying on as usual, but inwardly I was reassessing all of it: relationships, work, health, projects, housework, hobbies, religion; priorities. Some things I was able to sort out but some stuff I didn’t, and I got used to it being okay that not everything gets neatly resolved. I read that the opposite of uncertainty is not certainty; it’s open-mindedness. I found it helpful to think that even tho this bad thing happened, there was still room for good stuff to happen, too.
People knew I was dx with bc, but I only told family about the metastatic part. It felt too personal to share with too many when it was already hard enough for me to wrap my head around it. I worked as a teacher’s aid and continued for five years after dx. It was part time, four minutes from home with summers off, so that helped. I appreciated the distraction and the purpose it gave me. In time, the job became more physically demanding, so I retired.Along with reassessing everything, I began to simplify my life where I could. I stopped putting energy into meaningless relationships. I decluttered my house (an ongoing challenge!). I stopped doing things out of obligation (something I did way too much) and began to add more fun into my life in different ways: travel, trying new activities, pampering myself, etc. It’s all a process and takes time.
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Similar to exbrnxgrl, I told everyone at work that I have MBC. I worked in a medical center and had been with my team for close to 20 years, it was a highly supportive environment. And honestly, a lot of people sort of forgot about it as I continued to work, and I was able to schedule most of my appointments on my days off.
What was interesting was how some people responded after my husband died, about two years after I was diagnosed with MBC. The repeated comments among the lines of, "oh my GOD, you've been through SO MUCH, you just keep getting hit with TRAGEDY after TRAGEDY", said with sad teary eyes... good grief.
I ultimately decided to take early retirement last month. My energy level has taken a hit after nearly four years of ongoing treatments, and I needed spine surgery at the beginning of this year to correct a severe fracture (due to cancer). Also, while I loved my career, there were changes happening at work that were problematic. My days are now significantly less stressful.
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@amel_83 I feel the same way when I’m with people who don’t know about my diagnosis. I get to be just me. Not me with cancer. I’m glad you’ve been able to find your groove with work and ongoing treatments.
@exbrnxgrl what a great thing to have a career that you love and are passionate about. I like my job just fine, but I don’t have nearly the same affection for it as you did/do for yours haha!
@divinemrsm thank you for your response. I appreciate it! Your comment about the opposite of uncertainty being open-mindedness really struck me. I have never thought about it that way before. I’ve always strived for certainty, but will never have that again, so I need to adjust my thinking. I also find myself reassessing. It’ll be interesting how things go when I return to work. I’ve always been a bit of a people pleaser and since my diagnosis, I’m finding I don’t put up with the same things I did before. Including meaningless and unhealthy relationships.
@sf-cakes I’m glad you had such a supportive workplace. That can make all the difference in comfort level. Congratulations on the early retirement and it sounds like your enjoying your slower place. Less stress is always welcome!
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@exbrnxgrl thank you so much for educating people about it. I know from reading these boards that it is not an immediate death sentence, which most people do think it is. "Get your affairs in order".
As I mentioned, I don't want to be reminded of it when I am not thinking about it if that makes sense. I do have back troubles that I am very vocal about and there is one co-worker who always asks, "How ARE you?". I just hate that because my mind immediately goes to MBC, even though she is asking about my back. I go to work to relax, feel good about myself, keep busy and not think about MBC. Sounds crazy but it's true.
What bothers me the most is the treatment from nurses, doctors, dentists, etc. They treat me SO different now and that pisses me off. I thought those people would be a bit more knowledgeable and maybe even ask questions, but no. They treat me like "why would you fix your teeth/back/cholesterol since you are going to die?". Their demeanor is so negative.
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Dulcea, I feel outrage that any nurse/doctor/dentist would treat you with anything other than professionalism and respect! We are living much longer and deserve to have everything else taken care of, like our teeth and our cholesterol.
When I had my consult with the spine surgeon, I quickly asked him, "does the fact that I have Stage 4 MBC make me ineligible for this surgery?" He immediately answered, no, of course not, you're doing well (other than having a severe fracture, which he fixed). It's ridiculous for any current medical professional to give up on us.
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@sf-cakes I know! It's upsetting. No more joking during office visits.
Maybe I should start opening up the lines of communication about it and start educating the medical professionals. I'm pretty sure I'll be around long enough to benefit from Invisilign since it takes about a year to complete the treatment. Jeesh!
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I have had the exact opposite experience, doctors want me to tackle issues and I'm thinking why bother I have stage IV cancer.
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Sending you hugs, @sunnidays. People can live long lives with MBC, thanks to treatment advances! Educating health professionals is so depressing and frustrating. And maintaining a forward-thinking attitude can be very challenging. But surrounding yourselves with others who "get it" can be helpful. We're here for you and sending you all strength and love.
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@dulcea I’m sorry to hear about how those medical “professionals” are treating you. That’s incredibly upsetting. I don’t understand people sometimes.
@sunnidays I can relate to the “why bother” thoughts, particularly about going back to work for me or saving for retirement. I don’t have any advice. I just wanted you to know you’re not alone.
For those of you who wore a wig to work, did anyone say anything to you about it? I’m very nervous that people will be able to tell I’m wearing a wig and ask me about it. It’s hard to know how to respond when you’re keeping the diagnosis and treatment private.
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I’m going to say one thing on “Why bother, I have mbc…” issue. The thing is, neither you nor your mo knows how your mbc will unfold over time. When I was dx’ed, over 12 years ago, could I or anyone have imagined that I’d still be chugging along 12+ years later? No, of course not but I’m sure glad I didn’t put my life on hold. While I am not typical, neither am I unique.
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@dulcea, my experience with my doctors and dentists has been the opposite - they are very caring. My dentist was distressed when he realised that none of the painkillers he typically prescribes for pain after extraction work for me. He is pedantic about reading up on metastatic cancer and we joke about how very hard my jawbone is. He is wonderful. My doctor is the same. She knows my aversion to medication, and we joke about a lifetime of medication - we always laugh during my appointments, and they are good belly laughs, not polite titters.
@sunnidays, I get the "why bother" approach. I have an IUD that has been residing in me for far too long and my GP really wants it out - as does onc team. Every scan it is mentioned - even down to the brand. I said to my GP - "I have stage iv cancer - and you think i should worry about an iud that might go rogue?" We laughed and agreed that when my tumour markers have settled down we will revisit the situation. As @exbrnxgrl said - we never know how this will unfold and what it will do - so I live my life as normally as I can - I just have more medical appointments than I did previously.
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@exbrnxgrl thank you for those words. I need to save them somewhere and read them repeatedly, especially when I’m feeling not very hopeful. And you’re right - no one knows how it’s going to play out for any of us….cancer diagnosis or not.
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@harrow @exbrnxgrl is right. No one knows who will have years left or an easy or hard time with side effects from treatment.
Re working with mbc - the beginning of starting ibrance and fulvestrant were not easy emotionally as I was terrified and in shock from the stage 4 dx. As time marched on and scans showed remarkable improvement plus I found the medication easy to tolerate, I settled in to this new mbc life. In a weird way Covid helped me as we could continue to sell homes but the open houses and typical office gatherings stopped . Work allows me to not think about cancer all the time and I love selling real estate . In 11/2019 when I was dx I thought I had to quit work. My oncologist encouraged me to wait and see how I felt. I'm really happy I didn't quit .Re: wigs . I did not lose my hair but it has thinned a lot. I don't know of anyone will ask but you can say it's from cancer treatment. You don't have to explain stages etc - many people I work with know I've had breast cancer in (stage 1 in 2008) but don't know I had a recurrence or what stage I'm at. It wasn't obvious and my job is really to be out showing houses or on my computer writing offers/ listing homes. Close friends/ family of course know. They also know I have scans often AND that I'm doing well on my treatment . I chose not to discuss stage 4 and a lot of details but there is no shame in that decision - totally up to you as many have shared.
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@aprilgirl1 I too have quite thin hair. I don't know why I am not bald due to the amount of hair in the shower. I found some colored dry shampoo which is helping to spray paint the very bare spots for now. I also bought two wig toppers. One was covered by insurance and one I bought on Amazon and I actually like that one better!
I recently had someone at work ask my about my thinning hair and my weight loss. I just had my gallbladder removed that I put off for ten years. So for now, I have blamed the weight loss on that (it was due to Verzenio) and then the lack of nutrition for my hair loss. I am such a liar! But no one at work knows about any of my cancer diagnoses and I want to keep it that way for as long as I can.
I work in education so I'll have the summer off and I suspect I will be needing a wig very soon so I have the summer to get one and get used to it and I am hoping people don't notice when I return to work in the fall. We'll see what happens. I had the thought of lying further and saying I have alopecia but I hate lying.
If people know you had cancer the first time, you could blame your AI on hair loss, since I lost a ton on Arimidex. Good luck with your wig.
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@dulcea , I have thought about hair toppers!
It's a relief for me to not discuss mbc in my work life. Back in 2008 I was very open about my dx and received a LOT of unwanted / unexpected opinions and random people telling me sad tales of their grandma who died a horrible death from breast cancer (in 1970 etc etc ).
Menopause has caused a lot of hair loss amongst my peers. So far no one seems to have noticed but it's been gradual . I do use spray in hair color at times :) enjoy your summer off !0 -
I have three wigs that are all the same color, one that is past shoulder length and two that are much shorter. I used to work in an office with lots of women who wear wigs, weaves, hair extensions... they were very complimentary anytime I wore one and no one ever asked "why". I don't wear them often (I still have short yet thinning hair), but it's lovely to have the option.
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@aprilgirl1 I am hoping that returning to work will help me not think about cancer all the time too. My MO also told me that going back to work would be a good idea and would be helpful for me. Since I am choosing to keep my diagnosis private, maybe I’ll use menopause and stress from my leave as the reason if pushed. Or I could just say that I don’t want to discuss it.
@dulcea I have a human hair wig and it’s alright. Some days I don’t mind wearing it and others I can’t wait to take it off. I’m constantly on edge when I have it on and am fearful someone will notice or it will come off. I wear it with a hat most of the time so it’s harder for people to tell it’s a wig, but I won’t be able to do that at work. I’m trying a bunch of different ways to adhere it to my head and see which one I feel most comfortable with. Regardless of what I do, it still looks fake to me even though my family says it looks real. I hope you’re able to find a wig that you feel confident in!
@sf-cakes that’s nice to hear everyone was so complimentary about your wigs! That must have made things so much easier for you. I hope I am as lucky.
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Re: wigs. On the day I began chemo, a very kind, considerate, informative nurse gave me something like a tutorial on what to expect while going through chemo treatments. She thoroughly covered all the bases, including the topic of wigs. She started out addressing hair loss, then said, “When you start wearing a wig, scarf or other head covering, you’ll begin to notice other people wearing them, too. But people were wearing wigs and head coverings before that; you just didn’t really notice.” She said that’s because wig wearers and those with head coverings really do blend in with everyone else. Her point was that I need not be self conscious about it because most people would not realize I was wearing a wig. And I learned the nurse was exactly right!
I found a $90 wig that looked much like my own hair style and color. I couldn’t believe it even had a side part like I wore. People who knew I was wearing it still couldn’t believe it was a wig. So anyone else probably never even knew! My son, a high school senior at the time, had a friend who saw me in the wig and later said to my son,” I thought you said your mom lost her hair.” and he said, “She did, she’s wearing a wig.” At home I had a favorite snug cap I wore, but I was glad to wear the wig when I went out so I didn’t look sickly,
Imo, I think it’s rude for someone to ask if you’re wearing a wig. However, there’s all kinds of people out there, and some push the boundaries. I think you need to have several prepared responses if someone asks.
Person: Is that a wig you’re wearing?
WW (wig-wearer): Yes. Is there a reason you ask?
Person: You got a wig on?WW: Yes, and I love it! *changes subject
Person: Are you wearing a wig?WW: *slowly nods head, smiles knowingly and says nothing.
Person: I notice you’re wearing a wig. Why is that?
WW: (smiles) If you don’t mind, it’s not something I really care to discuss. *changes subject
Person: You’re wearing a wig. Is everything alright?WW: Yes it is! * changes subject.
And so on. I feel pretty strongly that we are allowed to create a boundary with how much, if anything, we want to reveal to others. Sure, some people are understanding but I dislike the people who pry. Social conditioning sometimes lead women into oversharing to make others feel comfortable, but we are under no obligation to discuss our personal health issues with anyone.1 -
@divinemrsm love these responses to anyone asking about hair or hair loss. Most people have enough going on that they don't seem to notice mine (I did have extra thick hair before ).
Sometimes I think a wig would be a good way for me to ease away from having my hair colored. I could get a nice quality brunette wig , stop coloring my hair and then once it is chin length and past the mixed skunk grow out , cut it and lose the wig …I'll wait until winter :)0 -
Hi all, thank you to everyone for sharing your stories. So helpful. I’ve been working full time throughout, but remotely. I go into the office once a month for meetings, otherwise I mostly work from home on Zoom. Have been thinking about going in mor frequently for the normalization it brings… but I love working from home. All of my colleagues know of my bc, only a few close friends and staff that it is mbc. It’s still new the recurrence and changing so I’m taking it one step ,one scan,one day at a time. I love my work and plan to stay at it till retirement at 70 .. 4 more years. I manage the meds well and my boss is very compassionate but expects a lot so working from home helps me be efficient. Sharing the mbc is hard , I don’t want my life to be all cancer all the time. And also don’t want to bottle up my emotions and keep it a secret, so I share a little one person at a time and that has been helpful. No social media announcements though, as I see some do on Facebook. I don’t want to blog about it either, just send love and receive love. Create, meditate, and do good work, love my family and friends and live with gratitude for each new day, each new season. Doesn’t mean I don’t have overwhelm days or sad days, but I do believe that everyday in every way I am better and better! And that helps!
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@divinemrsm thank you for the suggestions on responses to those who try to pry. I also hope the advice the nurse gave you about no one noticing is correct!
@rlschaller thank you for sharing your working story! I’m glad to hear that you have found compassion at work and can work remotely. I imagine that helps immensely. I hope I will get to work from home as well at least part of the time.
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At work, I take the halfway approach I tell colleagues I have cancer, and I dont say it is stage IV however I say I have cancer and leave it at that.
That way I find I am not hiding it, nor am I over-sharing, work colleagues are not friends or family.
I know everyone is different but I have a strong dislike of whispering and gossiping that someone has cancer so I try to be upfront and present it as no big mystery.
I have discovered that people often do not understand exactly what stage 4 cancer is so why go into details with people who are not family and friends?
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@sunnidays I like your approach, thank you for sharing. I am starting a new job and I also feel inclined to say that I have cancer or I live with cancer…I was sharing the news with friends when I got the recurrence and I agree, not everyone understands and many believe you are dying and I don't want to get that from people - especially at work.
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