Fill Out Your Profile to share more about you. Learn more...

Telling people??

tack33 Member Posts: 3

Just diagnosed with Mets to spine after being 4 years out from Stage 1. Blindsided and devastated to say the least. Just told my kids tonight (husband and immediate family also know) and it went ok, but wondering about work and other friends. I’ve been lurking for a while and I know you ladies are a wealth of information. Can you please tell me how/when or pros/cons of telling/not telling work colleagues and friends?? Any other advice on getting through the first few months of despair? Thank you..



  • moth
    moth Member Posts: 3,293

    Hi Tack, I'm sorry this is happening to you.

    I told everyone very quickly (using social media and designating people to tell others not online.. making the calls was too hard for me so I asked people to tell others)

    There are others here who have not disclosed their dx to many. I've heard some people believe it could affect their status at work. So that is one thing to consider- do you need to work? Do you plan to keep working? & if so, how supportive a workplace is it? Your proposed treatments will also be part of the equation- some treatments have huge side effects, others less so...

    It's really hard stuff. We all get it. I don't think there's any one way to get through the shock of it. It left me reeling.

    Where are your mets? If you fill out your profile and make it public we can point you to specific threads for your mets & treatments.

    Hang in there. One day at a time

  • sondraf
    sondraf Member Posts: 1,545

    Work doesn't know my status mostly because 1) the drugs I am on have kept it all steady for two years now and I look/operate as normal and 2) I don't want the pity looks or comments or ongoing questions. MBC is a mystery/confusing to a lot of people and while yes, there is a place for advocacy, at this time its not a role I look to fulfill nor is my current workplace somewhere I would be interested in educating people.

    I think it comes down to balancing your workplace and responses they may have made to others with long term illnesses (supportive? Not supportive?), how long youve been there, if you are in pain and need to manage some time off vs the type of work you do (lotta stress? not much?). You could also wait and see how this goes with your treatment plan and working and if its something you want to continue. I kept working because I was so blindsided I didn't know what else to do so just kept going, including taking work calls laying flat on my back after rads to my sacrum. For me work is a constant and something that takes my mind off the unpredictability of treatment and gives me money to do things or spoil family while I still can.

    As for telling others - someone on here posted about this circle approach - you only tell your closest people and they (if they share the same circles) tell others further out, etc so that you only need to manage updating a small number of people. There is a different name for this, but hopefully someone else will come along and explain it better!

    Ultimately, its your choice. There is no obligation to tell anyone anything. Only my immediate family know my diagnosis, and only my parents know that it is incurable (and even then I didn't tell them for 18 months because my brother was going through tongue cancer treatment and mom's best friend from HS got BC). That may seem odd to some people, but based on family and friend dynamics, thats been the most comfortable for me.

    As for dealing with the despair - its definitely a tough time, and your emotions are going to be all over the place. Let yourself feel them and then let them pass. Also be aware that once you get on a solid treatment plan, and see it working, your mental state will get clearer, but the MBC anxiety can drop in at any time. Just acknowledge it when it happens in a same manner. If you find yourself getting stuck in anger or depression or sadness, seek out a solid therapist - mine helped a lot last year. And don't forget to stick around and engage with the Stage IV community here, lots of info to share!

  • finallyoverit
    finallyoverit Member Posts: 131

    Tack33 ~ First let me say I am so sorry that you’ve joined us. Those first few months are brutal, but I promise, things will settle down and a new normal will emerge.

    I’m almost 5 years into bone only mets and outside of my medical team, exactly 3 people know. For me, I didn’t see the need for everyone in the world to know. I still look the same, act (on the outside, definitely have changed internally) and can do all of the things I did before. I was really not up for all of the “how are you doing really?” And “you look good!” comments, so I told virtually no one.

    Once you tell, you can’t untell. I know my friends and family would want to help and that it would come from a good place, but for me, the best thing they could do to help is not know and treat me normally, let me live normally (or as close as I could) for as long as I can. The ladies here are amazing.. ask anything.. we’ve all been in your shoes and are here for you.

  • dancemom
    dancemom Member Posts: 404

    I am telling on an as needed basis.

    One job where I have been my whole career, knows I have breast cancer because I told them I had to take time off for surgery twice. 1st when I originally was scheduled for mastectomy before Mets. When that was canceled I told them my treatment change which they all took as good news. Now I'm actually off because I had surgery last week. I didn't go into details about the diagnosis. Before I was diagnosed, I didn't understand all the nuances of different types and stages. I don't expect them to either. It's not important as long as I can do my job.

    one job, my boss had a mastectomy 5 years ago, so she has been very kind and helpful since diagnosis and she knows more.

    One job, I didn't mention why I had surgery, only that the dates changed. I don't know them as well there yet.

    However, DH told EVERYONE immediately! Good thing I didn't tell him the stage.

    Edit to add that has mental health resources. They offer free short term counseling.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,638

    Very personal decision as has been pointed out. I was essentially de novo and was completely open about my condition. I was working at the time and by being open, I avoided gossip, rumors, and speculation. I made it clear that if someone “heard” about my condition they could come directly to me. No looks of pity, no stigmatization etc. It was also important to me that breast cancer should be talked about openly and honestly.

    What I got in return was a loving and supportive school community. I was also able to be a support for a few parents who were dx’ed with bc. I worked with mbc for ten years and retired this past June. I’m a very open person so this worked for me and my openness was repaid by ten fold by kind and loving support by my school community. Not everyone would be comfortable with this approach but I knew my audience and the best way to control rumors is with the truth.

  • parakeetsrule
    parakeetsrule Member Posts: 605

    So sorry you have joined us here. I'm also a recent member of the Stage IV club, the worst club ever. I was diagnosed in November and I'm still figuring out who and what to tell too! My main piece of advice is to wait for the initial shock to wear off before deciding. Tell only who you need to tell and depending on the person, only what they need to know right now. Later on after you get a treatment plan in place and your brain starts to settle into your new norm, you'll be thinking more clearly and will be able to make better decisions. Like others have said, once you tell people you can't un-tell them. I'll share what I've done so far in case it's helpful for you.

    When I first started experiencing suspicious symptoms, I told no one. Once it became clear that the most likely explanation was cancer, I told my closest parental-level relatives, several of whom previously had breast cancer. At first I didn't want to tell them until I knew for sure, but after a few days the strain of not being able to talk to anybody became too much so I told them. After cancer was confirmed, I also told my boss everything. But I have The World's Greatest Boss. She was my boss the first time I had cancer, she helped our team through losing another coworker to cancer, I trust her completely, and like I said, she's the world's greatest boss. She shared the news with the inner ring of coworkers I interact with the most and that's it so far. Nobody else up or down the chain knows. It would have been possible to get away with sharing nothing, but these are also people I trust and some were there for my last cancer treatment.

    I waited until after Thanksgiving to tell my closest siblings. I had JUST found out and didn't want a super uncomfortable holiday gathering where everybody was freaking out and I had no answers for them because I didn't have a treatment plan yet. But after treatment was decided I told them and after they knew, they told their respective spouses and families. They also shared it with a few important mutual friends that I wanted to tell. We decided NOT to tell my 90+ grandma for now. Her short-term memory is terrible and the stress would affect her health, and she won't be able to see any changes in me. If changes become obvious later, then we'd probably tell her my cancer was back and not much else. As far as I know the rest of the extended family doesn't know yet. I wouldn't really mind if word spread though.

    With my first cancer diagnosis, I shared an update on Facebook with my entire group of friends, family, and acquaintances after I finished chemo and surgery. I told them everything I wanted them to know and what I thought people would have questions about. I haven't decided yet if I will do that this time, partly because metastatic cancer is not well understood and I don't want a bunch of pink fluffy cheerleading, partly because there's nothing they can do right now and nothing I need, and partly because I don't want people to act strange or treat me differently. At a minimum, I plan to wait to see if my treatment is working before deciding to tell more people.

    Telling people is exhausting!! Consider telling only a few trusted people and have them share the news for you, like I did with my siblings and boss. I'm trying to restrict me sharing the news myself to only people with no connection to my family or other friends.

    This isn't for everyone, but when you have to tell someone yourself, consider sharing it via written word: text, email, dm/message, letter, etc. That way people get the initial shock out of the way without you having to absorb their reaction on the spot. You are also able to share only what you want without fielding a bunch of immediate follow-up questions or having to help them deal with their feelings. I did this but my friends and family are mostly text people not phone people, so it wasn't unusual or weird. (and even if it WAS weird, I don't care. It was the best way for ME to share MY news)

  • tina2
    tina2 Member Posts: 753


    Everyone handles this differently. You must do what is best for you and can take your time figuring out what that is. Just remember, as finallyoverit says, you can't un-tell it. You are still in shock. Wait until your world stops spinning--and it will--to decide what is comfortable for you now and going forward.

    I realized when I was diagnosed with Stage I and still working that it would be best to tell only my employees and very close friends, asking them to keep the confidence. That worked well for me, allowing me to proceed through life and work without pitying looks and questions. I did the same ten years ago when I was diagnosed with Stage IV and have ever since. This helps me feel in some control, which is essential to my well being.

    Please don't despair. There are many of us in this forum who have been doing well for many years, thanks to science and good care. There is every chance you could be one of us!


  • sadiesservant
    sadiesservant Member Posts: 1,875


    I'm also sorry that you find yourself here but agree that you will be in a better place once you are on treatment. There have been so many advances in the last decade with many treatment options to keep us going with a good quality of life.

    Like exbrnxgrl, I have been very open about my diagnosis from day one. I believed this was the best approach for me given that I was still working full time (I've recently reduced my hours, more than four years after diagnosis). It just seemed easier to be up front as it avoids people wondering what's going on behind the scenes. In my case, I also felt it would lead to understanding if I needed time for appointments, or recovery from treatment. I had much the same attitude when I was originally diagnosed with BC in 2001.

    As others have noted, the need to make people aware may depend somewhat on your treatments. I have lost hair twice due to chemo and am not a fan of wigs so it was pretty hard to hide that something is going on. I have also had monthly infusions of a bone strengthener which was delivered through a portable IV. It was great as it allowed me to carry on with my day rather than spending two hours hooked up to the IV in the hospital but... it was certainly noticeable and I had to have someone at the office help me to take it out. :-)

    Throughout the last five years I have never felt pitied. Rather, I have also received much care and compassion. If anything, I get a lot of "You're amazing!" because people expect folks with MBC to be frail and weak. I do run across people that don't quite understand the disease, some of whom have had early stage BC but I don't find them intrusive.

    Take your time to figure out what works best for you. Wishing you a speedy and effective treatment.

  • aprilgirl1
    aprilgirl1 Member Posts: 743

    Tack33 - I am so sorry you are joining us but please know we are here for you and you will find great support from others who are in the same situation. I still work full time, having had stage 1 node negative BC in 2008, my stage IV occurred in 2019. I was devastated with the recurrence. I also work full time at a career I worked hard to establish in 2010. It's really a personal decision on how much to share. When I was waiting for my biopsy results, my business partner started to freak out and said we should cancel a lot of appointments and contracts. My response was immediately, " HOLD ON. Let me see what I am dealing with and what the treatment will look like, I am not dead yet". At that point, I decided to hold off on sharing my new dx until I started treatment and could gauge how it was working and how I was feeling. My oncologist told me that she expected me to live for years, there are many treatments for me and we would not start with IV chemo, which is what I was expecting. I took her statement to mean 2- 5 years and my husband took it as 20 years but that is a discussion for another time;)

    I started fulvestrant and Ibrance and it has worked extremely well. I am also fortunate that I have not experienced side effects so feel honestly really good right now. I have had dose reductions due to the impact on my white blood cells, which is almost expected with Ibrance. There is absolutely nothing wrong with telling everyone and there is nothing wrong with telling no one, outside your family members who already know. IT IS VERY PERSONAL.

    Personally, I am really happy that I waited to see how I felt on treatment before I shared my stage IV because it gave me time to get used to my "new normal" and continue to focus on my health, my family and my personal life/work balance. I am now trying to figure out when I "retire" . I sell residential real estate and had my highest sales in 2020 (I got my stage IV dx 11/2019) and 2021 was a great year, too. If I change treatment and don't feel up to working, I will retire and most likely share my dx but once again, I will wait and see how this all happens. I also don't have long term disability insurance benefits as I am self employed. That could also factor in the decision to continue to work.

    When I was stage 1 I was bombarded with "well intentioned" friends and neighbors that ended up needing a lot of reassurance from me that I was ok, and also shared horrifying and often incorrect info and fake remedies - not helpful. I have read that some stage IV women feel that by keeping a dx private, we are not helping people see how widespread stage IV breast cancer is and how many people are dx. When I am ready, which most likely means I need to change treatment and/ or retire, I will focus my efforts on showing the world. Right now I need to protect my energy.

    Edited to add: sending you love and please know we are here for you as you navigate this challenging time.

  • moth
    moth Member Posts: 3,293

    I think this thread demonstrates the wide range of experiences which is dependent on hormonal markers and location of mets. That drives aggressiveness and treatment and affects very much what your life will look like and what changes you might want to make. It was strong chemo and immunotherapy right out the door for me plus participation in a clinical trial which is quite time instensive. I had to let go of tons of things & it needed explaining to people but you'll see here that others have been able to sort of get back to norm

    So a lot depends really on your disease...and of course how you respond to treatment.


  • illimae
    illimae Member Posts: 5,514

    Like Moth, I told people quickly. I got the biopsy results by phone while at work, so I left for the day and had my “work husband” tell my team for me. I was the lead and knew I’d be out a lot and with no previous cancer and still young, I anticipated being bald from chemo, so no hiding that, lol. Close friends, family and coworkers were told within days but I decided to wait a couple of weeks to Facebook it, as I wanted to include the plan in the update. Everyone was great, bosses were exceptional and easy (basically whatever I want and whatever I need), coworkers were great too and the ones who needed to step up, finally did. The first few months were shocking and sad at times but treatment, tests and work kept me busy and after a few months of adjusting, while still feeling good, I was able to find balance, enjoy life and move on from the “I’m gonna die!” state of mind. 5 years later, with great meds and a lot of luck, I have almost no complaints. I know it sounds crazy or like denial but I honestly just enjoy my days as they come and try not to worry until I really need to. Good luck to you.

  • seeq
    seeq Member Posts: 1,060

    Tack33- sorry you find yourself in the worst club ever (spot on, Parakeetsrule). I told very few people early on, because I knew I couldn't field questions very well, as I had more questions than answers, myself. I told my sibs by email, because I have six and we're spread out all over. About the time I was considering opening up about it, a good friend was dx'd with esophageal cancer with multiple mets, and I felt the timing would be bad. In hindsight, I'm glad I kept it quiet. When my friend circle found out, inadvertently, I let it be known that I really didn't want to talk too much about it: I'm normally a very private person; I don't like being the center of attention - especially the swarm effect a cancer dx has; and I didn't want a bunch of unsolicited medical advice, inquiries as to my spiritual status, and endless questions.

    Since we've recently moved to a small town, I don't intend to share this information with anyone until I have to. Moth is right - physical status plays into that. I don't appear to be sick, though my husband and I know the toll it takes. I prefer to keep an I'm okay until I'm not okay mindset. And I don't want , "That's e new lady; she's sick."

    All that being said, I have the emotional support I need from my dh, and a few others. Everyone's situation and needs are different, so you need to do what's best for you.

  • simone60
    simone60 Member Posts: 952

    Tack33, I'm sorry you find yourself on this forum.. I agree with other comments that it really depends on your circumstances. I immediately told my family and close friends. I waited about 6 months, after the initial shock, to tell others. I did tell work when I went on short-term disability.

    I'm pretty open about it now. I sometimes look tired or decline social activities (thanks covid) and people will ask what's wrong and I tell them.

  • hjernt
    hjernt Member Posts: 20

    Joining in with the others on ‘welcome to the club no one wants to join’. Also agree that right after diagnosis is the WORST time. The shock, the fear, almost unbearable.
    Initially I shared with close family and friends and let them share to extended family, friends. I happened to be diagnosed on 12/13 and was just about to start two weeks off that I had already scheduled. It was perfect timing in some ways because my family and I could come to terms with it generally. Of course at that time we didn’t,‘r know about the Mets so we were still just dealing with BC in general. Got a whole ‘nuther shock in January with Mets.

    As far as work, I also took the open book approach. I told a small group in person and the sent a broader email. I knew I was going into Chemo treatments and my appearance was going to change. Also I wanted this to be talked about. I had a couple of people talk with me about family members that were diagnosed and one coworker was inspired to get a mammogram which led to her own diagnosis.

    I have been lucky to be NED for a year but I do have treatment every three weeks. Most people just know I am doing ok. If they ask if I am done, I just share that I am in remission (a term most seem to understand) but am still having ongoing treatment. I am glad the attention has died down but it was comforting how many people came to talk to me and looked me in the eye when they were asking “how are you really?”

    Thinking of you and it will get better.


  • seeq
    seeq Member Posts: 1,060

    hjernt- you reminded me of something else...I can't use my cancer dx as motivation for getting that mammogram to "catch it early", because it didn't work that way for me. I was on schedule for mammograms every year, even upgrading to 3D every other year (higher out of pocket cost). I do wholeheartedly support annual mammograms, they just didn't do the trick for me. Also, since I was diagnosed de novo, I don't have many words of wisdom for lower stage diagnoses, as mine was a completely different experience.

  • kbl
    kbl Member Posts: 2,637

    I told my family immediately. As for people outside of my close circle, I started a CaringBridge blog, where I invited coworkers and could say or tell people things in a group through that. It’s so much easier, and no one’s has to ask me questions. I write now once a month after my monthly doctor visit. I have about 20 people. I don’t have anyone close on Facebook, so I didn’t post it there. They have the ability to comment and are a source of support for me. I’m sorry you’re joining this club.

  • tack33
    tack33 Member Posts: 3

    Thank you all for your kind responses. This is really tough. I feel like I wake up to a nightmare every day. I appreciate the insight though and I’m going to wait until I settle into treatment before making any decisions on who to tell. Good advice :) Another question:What did you all do for support? Counseling? Anti-depressants? MBC support groups? I think I’m going to need all the support I can get.

  • parakeetsrule
    parakeetsrule Member Posts: 605

    It seems crazy but even only a few months later I now sometimes wake up in morning and don't immediately think "I have Stage IV cancer! ARGGHHHHH!" Usually I think "ugh, can I just go back to sleep instead of working?" :)

    I get most of my support here or talking to a few specific friends and family. I haven't had any luck with support groups because they all meet during working hours and I still have a full-time job. Lots of people take anti-depressants/anxiety meds. After a rough week last month I asked for some but the hospital wheels are turning slowly and I haven't gotten them yet. I'm not sure I need them all the time but several of the drugs I'm on can cause depression so I want to be ready if it happens again!

    If you haven't yet, check out all the other forums in the Stage IV part of this site. There are topics for almost anything, including non-cancer stuff and silly things. It's nice for when you have random questions or just want to exchange silly pet photos with people who know what you're going through.

  • dancemom
    dancemom Member Posts: 404

    If you are in a cancer center, they may have a person who can help with finding resources. That is how I found which has councelors, and also they set me up with a visiting nurse for post op and OT to help me get back to work. Asking questions here helps too.

  • sf-cakes
    sf-cakes Member Posts: 503

    Tack33, I'm also sorry you're in this club, and I agree with so much of what's already been said about the panic and doom and earth-shattering fear getting better with time. I'm a year out tomorrow from my MBC diagnosis (which happened six months after my stage 2 diagnosis, just when I was spit out of the surgery/chemo/radiation merry-go-round!) and it is, surprisingly, better. Emotionally better, and I'm able to get in touch with gratitude every day. Not every moment of every day... but daily.

    For support, this site here has been amazingly supportive. I've learned more here about side effects, treatment options, and specific suggestions to help with just about everything MBC-related than from my doctor/treatment team. I also attend a virtual MBC support group that meets twice a month. I have one friend who I can talk to about any aspect of this, and then other friends who provide more general emotional support (but who can't really handle taking much about MBC). My job knows my diagnosis, but honestly most of my coworkers have kind of forgotten about it, since I'm able to work and seem fine to them. Having my supervisor know is helpful, though, because there are no questions about needing to get to appointments or continuing to work remotely.

    i also use a THC/CBD tincture that helps with anxiety, because I had a LOT of it. I couldn't relax and couldn't sleep, and since all these movies I've watched where folks with cancer are smoking marijuana, I reminded myself, hey, I have cancer, let me try some! I don't smoke it but the tincture put under the tongue is mild and I don't feel high. Just less freaked out.

  • simone60
    simone60 Member Posts: 952

    Tack33, I manage anxiety with a prescription. I only take one pill on scan days. Other days I do yoga, meditate, and sometimes take a gummy. I just started a gratitude journal so hopefully that will help also. There are several Facebook groups along with this site that I sign into once in awhile.

    I talked to a counselor in the beginning to help get over the initial depression that comes with a M BC diagnosis. You learn to live with cancer after awhile.

  • amontro
    amontro Member Posts: 184

    I was employed 10 years at my job when I was diagnosed with stage 4 denovo. I had to tell them, mostly supervisors, what I had because of all the time off I was taking at the beginning. After a while, I started telling other people. At first, they were solicitous because they saw me leave work at odd hours. But you know after a few years, they forgot about it and some thought I was cured.

    My daughter was with me over 13 years ago when I received the death sentence. My oncologist told me to get my affairs in order, travel a lot, and buy a wig, because I was not going to around for long. Fortunately, I did my travelling which was great because I can't now with loss of energy and covid. I pre-planned my funeral a few years ago so that my kids wouldn't have to (I even have my gravestone on my plot.). The $350 wig I bought is still in the closet because I didn't lose my hair.

    So as everyone else said it is an individual decision depending on how you feel and who you trust.

  • pbsoup
    pbsoup Member Posts: 17

    LOVE this thread. it is such a personal decision who to tell, how to get support etc. There is no right or wrong answer.

    The first time around, I wanted to keep it secret but my husband, who ran a public cultural institution, felt obligated to tell his board (God knows why...) That turned out to be amusing as all the old fogies immediately felt a bond with me and came up at events to chat about health issues. My daughter, then age 9, told all of her friends at school, so I had nosy PTA moms sidling up to me at school events saying things like "What KIND of cancer IS IT???" To one I said, "I thought no one knew..." to which she responded,"Everyone knows... it's the elephant in the room..." then gestured out over a room full of women swilling Chardonnay and gossiping as they supervised a square dance. (Note--no one sent the elephant flowers or casseroles...)

    That go round, I was thrown into a severe clinical depression brought on by chemo induced early menopause and Tamoxifen. I am normally pretty positive and strong, so this was really rough, especially as I felt my doctors dismissed me when I said I thought it was the meds. My oncologist prescribed antidepressants saying "Lots of successful women take them..". I am not diminishing antidepressants, they are lifesaving in many cases...but my belief--and experience, is they are very strong medicine that impacts brain chemistry, so need to be administered mindfully, alongside therapy and determination of what is causing the mood issues, not handed out like tic tacs.

    Interestingly, my current oncologist said that up to 10% of women experience severe depression on Tamoxifen. I felt so vindicated when he said that. As if a weight lifted all these years later. If someone had told me that back then, I might have had an easier time as I would have known definitively that it wasn't "me" that was crazy, it was my body and mIind reacting to a medication...I try to get that message out now as I see women on these boards questioning why they feel so down... Cancer is inherently depressing, of course, but so is inflammation, a lot of the medications we're prescribed etc. The combination of things that may lead to clinical depression in cancer patients needs to be discussed and unpicked a lot more I believe. I sometimes wonder if the way I--and other women, are not taken seriously when discussing mental health side effects is a long term result of women being labeled as "weak" and "prone to hysteria" Just a thought...

    Fast forward a decade, Stage IV. I swore my husband to secrecy and said I would tell who I want when I want. This time he respected my desire. I told my daughter, so her college friends all know--some things never change... but otherwise I pick and chose who to tell. I am 2.5 years in, doing well, and outwardly seem fine, so I mostly keep it to myself. My British in-laws don't know--they are old and don't need the worry. Some of my barn mates where I ride know--horse people are tough and not prone to fussing which is bliss. My 3 best friends from high school don't know, and will probably be furious when they find out, but a few newer friends do--chosen for their discretion.

    When I sit quietly and think about why i don't talk about it, I think the root is denial. The less I talk about it, the more I can spend this time while my quality of life remains intact feeling "normal". It's as if by telling people, or talking about it, I give the Cancer the undeserved power and privilege of an identity. Does that make sense? I know logically that whether I tell people or not, things will play out as it will...but it is how I feel comfortable right now.

    Now, of course, not talking isn't a great way to build a support system. And terminal cancer is a profoundly lonely journey. I saw a therapist after my stage I diagnosis, during the worst of my depression, and it wasn't that helpful so I haven't done that. I am active in my church, and that helps. I did a silent meditation retreat a few years ago and want to do that again as it was profoundly helpful. I exercise--VERY helpful.

    My husband listens and cares, but is not overly engaged in the minutiae. I complain that it bothers me he isn't more in the weeds, then find myself snapping at him when he asks more than two or three questions.... My adult kids are sweet, but are in their own denial and are just launching their lives, so I don't want them preoccupied with me. Instead I am focusing on being together as much as possible--not "making memories" in any sort of contrived way, but having good talks and enjoying shared interests. I am blessed that after rough adolescences, they have become pleasant adults for the most part.

    So for day to ay support, I find these online forums to be incredibly helpful--here and a few others I participate in. I learn a tremendous amount, and it is good to be in a space where we're all on similar journeys. I also like that I can read posts, or not...respond, or not... These days, after a bit of progression from bone only to liver, I am protecting what I fill my head with, so other than practical, actionable posts about managing side effects and treatment for liver mets, I tend to focus on upbeat things--long term survival. good scans. ideas for clinical trials etc.

    Every so often I try to get practical with myself and think "I need to sit and face my fear of death." Then I think "nah, maybe not" and google "20 year MBC survivor story" ...

    On the other hand, I notice when I hear about people who are five years out from an MBC diagnosis I think "wow, five years is a LONG TIME" Then I realize I am only 58, so if it wasn't for MBC, I would be looking at perhaps 30 more years of useful life. Oh well... Not projecting out too many years (or months even) into the future has become a "new normal." I am used to it now, but sometimes wish I had the luxury of thinking I'm immortal.

    My belief, at least right now, is I am strong so will be able to handle things as they come, not a moment sooner. I don't want to look back and feel like I squandered a minute of this liminal moment between reasonable health and descent into proper illness.

    Long post, all about me, but there you have it...P

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,638

    I am not particularly good at hiding major things in my life, especially something life altering like an mbc diagnosis. As I mentioned earlier, I knew my school community would be very supportive. Personally, I have never felt that any cancer was something to be kept under wraps. It’s a medical condition period and for me carries no shame or stigma. Being open about it allowed me to control the narrative and perhaps helped some folks realize that there is no shame in speaking openly about. If I hid it, I felt I would be contributing to the perception that it requires secrecy.

    I am not suggesting that anyone adopt my approach. I honor everyone’s right to deal with the issue of telling in whatever way works for them. I would also like to add that my openness has allowed me to support a newly diagnosed parent at my school and to help people learn about bc (beyond the pink version). Not for everyone, but I’m a teacher (retired in June, lots of subbing right now).

  • anotherone
    anotherone Member Posts: 539

    support - online (here in particularly), friends ( all know , told them at different times , from within 30 minutes of diagnosis to within a month or so), significant other , penpals, books.

    I am lucky in that I am highly functioning and looking pretty normal.

    No medication- no need for it really.

  • olma61
    olma61 Member Posts: 1,016

    the cancer center where I began my treatment had tons of emotional support resources and I took advantage of as much as I could! I saw a therapist, I put my name down for the chaplain to visit during my infusions, got to know the volunteers who came to distribute snacks and comfort items, etc. I got an atavan prescription from my oncologist but never took them.

    I don't have a large circle of friends and I've lost touch with some I used to be very close to. Is there a greeting card one can send to inform them “ hey I know we've lost touch, I have cancer, the terminal kind"

    My family have been great so far and they're my main support system. I never wanted my neighbors to know, I just don't feel like chit-chatting about my health and never wanted to flaunt my bald head. I always hoped no one would pick up on my Tuesday routine of leaving the house and putting my cooler bag in the car. ( my freezing kit for chemo)It is true that people can surprise you with kindness and support when you open up...I may be missing opportunities but oh well.

    Several of my neighbors have died of various types of cancer in the last few years, sadly, and one woman who is the organizer type thinks we might have an environmental problem in the building. She passed around a letter asking if we know of other cases..l might out myself to her if she is really going to initiate an investigation. I've yet to go talk to her though

    Luckily I am self employed so no bosses or coworkers to tell.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,638

    In terms of telling and work, I do think it’s important to have a good read on the attitudes and policies regarding illness at your place of employment. Some have feared discrimination and even job loss when they have an extended illness. The thought of losing a livelihood or being regarded as a lesser employee does play into one’s decision to tell or not. Prior to retirement, I was a union member. Our contract prevented any adverse or punitive action due to extended illness

  • Kikomoon
    Kikomoon Member Posts: 358

    Olma- I am looking for a similar greeting card for long lost friends.

    I told my two best friends ( they are also coworkers) the extent of my cancer from the beginning. They took notes as we listened to the call about how extensive it was. We told immediate family and let them relay diagnosis and all updates to whoever they want. My mom told her whole church which is nice because the pray for me. I told my manager “BC, really bad” early because of all the Dr. Appointments. Once treatment started I told the whole (small) office, I have cancer. That’s it. So they were not surprised when I lost all my hair. After first round of treatment, I was doing better, but discovered brain Mets. Then I told my manager the extents of it since you know, it’s my noggin and all, my money maker if you will. So work is really flexible and I can work odd hours, stay home, and dowhat I need to do.

    I also told some neighbors “BC real bad” since I’m pretty active in our neighborhood association. It has spread to other neighbors and for awhile at the beginning, some were bringing gifts and food which was really touching and helpful. Those have since dropped off. I think if any of them asks about it I may tell them the extents. We told our immediate neighbors Stage IV and that news has spread to a few other neighbors. It’s nice because they ask DH about me and say they pray for me.

    I don’t want to broadcast it on social media, as I don’t broadcast anything at all, kind of a private person. Still deciding though how to let old close friends know. I don’t want them to find out I’m gone and wonder why I didn’t tell them.

  • dancemom
    dancemom Member Posts: 404

    yeah, I need that card. Life, covid, moves...I have a few very old friends I slowly lost touch with over the years, and I had started reaching out to during covid, then CANCER, so I stopped. You just can't update people with that news.

  • parakeetsrule
    parakeetsrule Member Posts: 605

    The "card" situation is one reason social media can be useful. I have people I haven't talked to in a really long time but most of them are still connected to me on Facebook, so posting a mass update keeps them in the loop. Even if they don't see it right away, if they happen to think of me and pull up my profile, they'll see it.