Disclosure of health to “everyone”

[Ginevra]

I’m struggling a little bit with this decision about sharing my cancer diagnosis with “everyone else.” I have told all the important people, the main groups I am a part of, and a few “straggler” friends who are not part of my groups and don’t see me often IRL. I have not yet done so, but I plan to inform my first cousins, because they might need to know this if they go through a cancer diagnosis. There are a couple other “straggler” friends I have thought about telling but haven’t yet. 

I have considered putting up a post on FB to just sort of cover it with “everyone else.” I partially don’t want to do this, though, because I...don’t really know why; something about making a blanket announcement to “everyone” just makes me terribly uncomfortable. It might be true that anyone who doesn’t know by now doesn’t really need to know that badly. OTOH, it could definitely be awkward later if people are like, “What do you mean you’re a breast cancer survivor? When did you have bc?” Also, though...maybe I don’t care about what those people may think. If they don’t know about it, they aren’t central to my life maybe. Maybe? I’m not sure. 

Is this really just for me to decide? Or is there an etiquette I don’t know about that would be proper? 

P.S. it again strikes me as ironic that I talk about this struggle with strangers on the WWW, yet I’m talking about feelings of privacy. ☺️

[Pawz4me]

I think it really is up to you. Do whatever will make you feel better, if you can identify what that is.

[Liz CA]

I am a rather private person and guard the little privacy that we have these days. This is not how most people handle it. Paradoxically, I never think those who do share are too open, too whatever. Maybe they have more energy to deal with the fallout and have more courage than I did.

I would not announce anything (but I don't think others are wrong if they do) to any one who "does not need to know." And even that term is debatable. When I had surgery with early ovarian cancer 11 years ago, I told nobody except my dh and my best friend. My son knew about it too.

I didn't even tell my mother because I would have had to put up with endless questions and "oh my, oh dear..." When I was in the middle of it I did not have the energy to deal with other people's surprise and possible shock. We did not tell ILs either because I did not see any reason to worry anyone. Had things gone downhill for me, I suppose I would have had to say something sooner or later. If it somehow came out now, I could deal with it much better because it's in the past now - even though there is no way of knowing if something will rear its ugly head again or something new will crop up. 

All this to say I think you have a right to decide whom to tell and you need not make any excuses. If someone later finds out and comments on it, I suppose I would say something along the lines of "It was a stressful time and I had little energy / or needed to just focus on this one thing." The whole world is not entitled to every bit of news about someone.

[Liz CA]

3 minutes ago, Pawz4me said:

I think it really is up to you. Do whatever will make you feel better, if you can identify what that is.

 

Oh look! I could have said what I did with just one sentence.  ??

[Rachel]

An acquaintance of mine went through a very similar situation to yours last year. She only disclosed it to those closest to her and a few others. I happened to be in a bible study with her and she requested prayer before the first surgery. She told us that while it wasn’t a secret, she didn’t feel like announcing it to the world at large.

After her lump was surgically removed she had a few rounds of radiation. After the last treatment when she was declared cancer free, she posted a picture on FB of a bracelet her daughter had bought for her celebrating that treatment was over. Then she briefly explained her journey and thanked those who had helped her with doctor appointments and such. I thought it was a nice compromise between letting people know and maintaining privacy while in the midst of things.

 

[Arcadia]

Facebook (and other social media) is just too permanent in its retention of posts. With close relatives, it has always been a kindness to inform due to possible genetic factors. However my relatives have informed relatives after treatment because they don’t want hundred and one well meaning opinions on treatment. There is no etiquette that I know of.

When my late cousin had leukemia, their church congregation, and my aunt’s dept. colleagues knew. My uncle is self employed so there wasn’t a need to take leave.

[prairiewindmomma]

It is really up to you.

Dh did not tell his co-workers when our daughter was diagnosed with terminal cancer.  Most people outside of our immediate circles really have no clue of any of the details of our personal lives. I have shared way more here than I ever would to people in real life, and even then, it's only a portion of all that goes down inside of my own walls.  I think most people have some curtain of privacy that they draw around themselves, and that's ok.  There's a reason we have different levels of intimacy with people, right--casual acquaintances, "good friends", and those who we just assume will be there when we need them, right? I tell my friends who I would show up at 3 am for most things, and my casual acquaintances get the annual Christmas card photo. My good friends know some things, but not all.

Do what you want to do, and feel free to to say, "Some things are just private" to anyone who gives you h#ll about not sharing the details of your personal situation with everyone. You don't owe anyone in that level of friendship anything. (I would argue that you probably should tell your husband and children, once you know the details. ? )

[klmama]

Tell who you want to tell.  Be clear about how you want those people to handle the info, such as "Please share with your church's prayer chain" vs. "Please don't share this info with anyone else, including your 2,557 FB friends."   (There are too many people whose reaction to anyone else's difficult life situation is to post on their own FB about how stressful it is for them that their friend or sibling or distant cousin they haven't seen since 2nd grade is dealing with such-and-such problem... because it's all about them. ?)  

Praying for your journey.

 

 

[prairiewindmomma]

1 minute ago, klmama said:

Tell who you want to tell.  Be clear about how you want those people to handle the info, such as "Please share with your church's prayer chain" vs. "Please don't share this info with anyone else, including your 2,557 FB friends."   (There are too many people whose reaction to anyone else's difficult life situation is to post on their own FB about how stressful it is for them that their friend or sibling or distant cousin they haven't seen since 2nd grade is dealing with such-and-such problem... because it's all about them. ?)  

Praying for your journey.

 

 

Yes, this, exactly.....dealt with this dynamic way more times than I would like. 

[SKL]

Personally I probably would not share with everyone, but you should do what you feel best about doing.  Don't feel pressured to decide right now.  Nobody "deserves" to know outside of your family circle and closest friends.

[sassenach]

There are no rules or etiquette. You are never obligated to share anything about your health with anyone.

In my own life, I've found that I am very private about health info on social media, which is pretty different than my in-person interactions. I tend to be an open book in face-to-face interactions. I had a heart thing a few years back and my dh posted a picture from the waiting room. We had never discussed it before, but I was so upset by it. It's nothing that I would even hesitate to share in person but I really didn't like it being "out there".

My advice to you is to wait. You can always post something about it down the road, but once you open that door, it's open. Be sure that you want it open. 

[wintermom]

Firstly, I'm very sorry that you are dealing with this, and I sincerely hope that treatment, etc. goes really well for you. 

Secondly, you can do what ever you feel is right for you. Were I you, I would think very carefully about why I want/need to disclose this private information to the general public (give or take, because you have no idea how far and wide the "sharing" will go). 

[sassenach]

One more thing- my experience is that sharing this info is seen as a conversation. I said "I have this health issue" and now you get to respond with whatever you feel like saying. That could be nice like "Love you and praying for you" or it could be terribly unhelpful like "my aunt had that and it didn't go well" or "if you do this coffee enema, it will cure you."

That said, you might rather just get it over with and that's ok, too. We're all different and whatever you choose to do is completely ok.

Edited October 9, 2018 by sassenach

[Katy]

Decide not to decide until you know more.  When you have a good idea of stage and how you're responding to treatment then decide.  One plus to sharing widely is you never know who will become more supportive and get closer to you.  Disclosing my miscarriages led to some IRL friendships being renewed.  You might need that, you might not.  It's okay to not know yet.

[Pawz4me]

When DH was diagnosed we pretty much had to tell family and his employer. He was being whisked into major surgery very quickly, there would be a prolonged recovery period. So to some extent a lot of the "who/when do we tell" decision was made for us. But one thing he was adamant about was that nothing be put on social media (Facebook). He's a private person and hates FB with a fiery hot passion. He sure didn't want to be a topic of discussion. Thankfully everyone seemed to respect that, although in hindsight I wonder how much of that was due to DS22 issuing some pretty darn strong threats (for him) to the family members who are most active on FB, and letting them know that he'd be keeping a very close eye on them.

[regentrude]

This is entirely your decision.  You do not owe anyone a disclosure.  Act as you feel comfortable. 

I have a friend who copes with her by diagnosis through blogging and videos she shares publicly. She documents every step of her journey. This is how she is processing and how she finds strength and support.  But that is *her* way. Another woman may feel more comfortable sharing with her nuclear family only. 

You get to decide what feels best to you.

Edited October 9, 2018 by regentrude

[school17777]

If this journey is going to cause you to be missing things that you would normally participate in, I think I would go ahead and make an announcement on Facebook so people understand why you might be “flaky” (or however you want to describe it).  Plus, you may get encouragement from people you wouldn’t have expected to.

I feel privileged to be part of some people’s journey through treatment.  It is so much easier to follow on Facebook or caringbridge and then we can sort of figure out when they might need help with meals or other ways.  

Also, if you are the one to share your information, it doesn’t lead to gossip because so and so didn’t realize that whoziewhatsit didn’t know and wondered how you were.

[alisoncooks]

We used FB as a way to keep DH's large network of profession-related friends up-to-date with his treatment. He has strong connections to many of these people, but they often don't see each other but 1-2x a year. So FB was good for us in that regard. 

DH also liked it because it lessened the need for him to go through the *whole spiel from the beginning* every time he saw someone. Most people had, at least, a rough idea of what was going on. None of the stricken surprise at his diagnosis. 

[Guest]

3 minutes ago, school17777 said:

If this journey is going to cause you to be missing things that you would normally participate in, I think I would go ahead and make an announcement on Facebook so people understand why you might be “flaky” (or however you want to describe it).  Plus, you may get encouragement from people you wouldn’t have expected to.

I feel privileged to be part of some people’s journey through treatment.  It is so much easier to follow on Facebook or caringbridge and then we can sort of figure out when they might need help with meals or other ways.  

Also, if you are the one to share your information, it doesn’t lead to gossip because so and so didn’t realize that whoziewhatsit didn’t know and wondered how you were.

The funny thing is, I already know that I do not want to use caringbridge, no matter what turn this might take. Here’s my rationale: I love to write and I care about writing things well and I care about how people will respond to what I write. I am absolutely certain that a caringbridge blog would turn into...not the needed thing...for me. I would feel like I have to amuse or entertain my audience. 

I mentally decided this several years ago when my SIL went through cancer. Some readers commented on her excellant writing and I thought, “Oh my, that would be a pitfall for me!” Because then I would feel like I have to live up to my readers’ expectations. 

[Guest]

22 minutes ago, sassenach said:

One more thing- my experience is that sharing this info is seen as a conversation. I said "I have this health issue" and now you get to respond with whatever you feel like saying. That could be nice like "Love you and praying for you" or it could be terribly unhelpful like "my aunt had that and it didn't go well" or "if you do this coffee enema, it will cure you."

That said, you might rather just get it over with and that's ok, too. We're all different and whatever you choose to do is completely ok.

Yes, this. This is a big part of what I hope to avoid. 

[happypamama]

You tell whomever you do or don’t want to tell. Nobody is entitled to that formation. 

 

I find that sometimes I will share more info in a forum like this one than on FB. But I also use filters a lot on FB. There are some people who don’t need all the details but I don’t necessarily want to be rude by turning down a friend request so they just get filtered out of most stuff. I’m very careful about what I tell and to whom and when, and that’s my business and nobody else’s. 

 

Maybe you would prefer to make a FB post, but maybe you’d prefer not to. You might want to tell a few close friends and let them spread the word as needed. There’s no right or wrong way. 

[Lang Syne Boardie]

4 minutes ago, Quill said:

The funny thing is, I already know that I do not want to use caringbridge, no matter what turn this might take. Here’s my rationale: I love to write and I care about writing things well and I care about how people will respond to what I write. I am absolutely certain that a caringbridge blog would turn into...not the needed thing...for me. I would feel like I have to amuse or entertain my audience. 

I mentally decided this several years ago when my SIL went through cancer. Some readers commented on her excellant writing and I thought, “Oh my, that would be a pitfall for me!” Because then I would feel like I have to live up to my readers’ expectations. 

 

When my son got sick, I did a lot of FB'ing about it - he was just-turned-18 and didn't mind, and my FB was very, very active back then. So we had a lot of friends and family who really wanted to know what was going on. I didn't really have to put up with a lot of nonsense, thankfully (dumb comments, bad advice). 

But you know what, when the crisis had passed and it was down to a long-term, serious illness that my son would need to manage for himself, as an adult, I made the decision to stop writing about it. It was no longer an ICU situation, and he deserved his privacy as he began to *live with* the illness that he didn't die from (yet). 

Well, people didn't like that! They'd behaved well during the crisis, but they didn't want that door to be shut. I was surprised that anyone would feel entitled to someone else's story like that. Thankfully, they remembered their manners and did not start pursuing my son for information, that I'm aware of. But there are still people mad at me because I didn't give them any further details.

[Suzanne in ABQ]

You can keep it on a "need to know" basis.  It's totally okay to just keep it with near-strangers on the internet, and only the most intimate family and friends.  "I'm still figuring out how to deal with this.  I need to keep it to myself for now.  Maybe I'll tell 'those folks' later."  After you've dealt with it awhile, it may not seem like such a crisis -- more like just a major pain in the butt.  You may decide to let more people in at that point, to sort of spread it around.  Eventually, your cousins should know it's in their family, with advice to be more watchful, maybe start a campaign to get all the females in the family checked for genetic predisposition.  But no, you are not obligated to share your private health information with everyone you know.

My friend was diagnosed with a blood cancer last spring.  He's a teacher in my dd's school, and we're in a carpool with 12 other families.  Well, he told me what was going on because he needed to travel for treatment, and wanted me to feed their animals, but he asked me not to tell my daughter, or the other families in carpool.  He was pretty freaked out about the whole thing, and didn't want the kids at school whispering about him.  By the end of summer, though, he was much more comfortable with the treatments and prognosis, and he told the other carpool parents because he knew he was going to be out of carpool once a month when he had his treatments, and wanted to explain why he wasn't driving as much.  By the time school started, he was comfortable with the kids knowing.  

[barnwife]

I'm firmly in the "tell whom you want, when you want" camp. If that means telling your BFF six months before your siblings (or vice versa), so be it. In this case, it's all about you. If you feel someone would be a great support, tell them.

That's what I told my dad after his diagnosis of pancreatic cancer. I haven't changed my opinion since.

[Pawz4me]

44 minutes ago, Quill said:

Yes, this. This is a big part of what I hope to avoid. 

Unfortunately, in our experience you may at best be able to minimize it.

Be prepared to deal with the crazy, no matter how you try to keep a lid on info. And IMO how you want to deal with the crazy is totally up to you. DH and I decided from diagnosis day that as much as possible we'd treat all comments with grace and politeness. In the past we've been the ones struggling to find something to say that was kind/helpful/at least not offensive. We know how hard it can be. So we went in prepared to take comments in stride and to thank people for their concern, at least as much as possible. But this is another of those areas where you get to do it the way you want.

[SKL]

1 hour ago, sassenach said:

One more thing- my experience is that sharing this info is seen as a conversation. I said "I have this health issue" and now you get to respond with whatever you feel like saying. That could be nice like "Love you and praying for you" or it could be terribly unhelpful like "my aunt had that and it didn't go well" or "if you do this coffee enema, it will cure you."

That said, you might rather just get it over with and that's ok, too. We're all different and whatever you choose to do is completely ok.

I think you can turn off comments if you don't want them.  Though I guess you might still get PMs and such.

[Rachel]

One thing to keep in mind is if you choose to tell, decide how much detail you want to share. I was so frustrated when my son was in the NICU and my well meaning family would tell extended family incorrect info. I finally requested that my husband not give any details to my in laws other than things went well today or things didn’t go well. My son had a fairly minor issue, but by the time to made it down the line it sounded like he was on his deathbed. 

[Andromeda]

There is no etiquette for this. Nobody is entitled to highly personal information.

Sometimes it is nice to just enter certain circles, such as the wider acquaintance and friend environment as if life is normal. I've had my share of challenges, and really, there are people for whom I ceased to be a person and became the circumstance. They no longer could see *me.* Honestly, they probably did not know how to handle these things, and I don't begrudge them for that at all.  For that reason, I chose to share less and less with each situation. 

There are people on whom you can depend to really care what the answer to "how are you today?" is, and who will try to help. For others it is more of a curiosity and discomfort. 

[Annie G]

You get to share or not share...it’s your choice.  After seeing how many well meaning comments upset a dear friend w cancer, we opted to not go public with some things we have faced. I don’t regret it at all. Our close circle of friends knew and supported us and those casual acquaintances didn’t need to know. I didn’t want to deal with being told to try things like chiropractic or supplements or yoga or whatever. I just didn’t. 

‘People who go public w their cancer battle are brave, and I respect them, but it’s not ‘not brave’ to keep things private, at least until you feel comfortable sharing them. 

[Bambam]

I consider stuff like this your business. You can share with as many or as few as you feel comfortable with. Period. This is yours to deal with as you desire. 

[MEmama]

When I was diagnosed with a rare, deep tissue sarcoma, I didn't tell anyone other than DH. After my surgery I ended up immobile for several weeks and I needed my in laws to take care of my then-toddler, so we told them at that point. There was literally no other reason for them to know. I can't remember now if I've ever told my parents. It's not like they could do anything about it.

Same when my husband had pancreatitis, and after that a cancerous tumor was found on his kidney. He eventually had to let his folks know and just a few other people, but other than those who *needed* to know, we didn't have any reason to publicize it. 

Everyone's comfort level is different. You get to the make the rules and you get to change them as you see fit. You have no obligation to explain yourself to anyone else at any point. Do what feels right to you, whatever that might be. 

Edited October 9, 2018 by MEmama

[Lady Florida.]

This is totally your decision and you don't owe anyone an explanation if they later find out. If their feelings are hurt because you didn't tell them that is on them. 

 

[lavender's green]

Totally your decision.

My extended family, and a church I used to go to, can get pretty crazy about illness and blow things out of proportion - or get all coffee enema on you (LOL, good one, Sassenach!). I would probably keep things on a need to know basis, but that's just me and my particular circles. 

I think talking about it after the fact can be a good happy medium, if you're so inclined.

[Penguin]

2 hours ago, HeighHo said:

There is some etiquette. If you are stage 0 or 1, think before speaking to someone that is 3 or 4 ...they likely are on round two or are on oral chemo for life. Its just not the same distance from death's door and they've changed their lives to a more short term plan. 

I think this is an important point. 

I agree with what pretty much everyone else said - you get to do this your way. 

Oh, and I found that even some of the people closest to me managed to say very-much-the-wrong-thing. 

[Ravin]

It's 100% your business and you can decide for yourself who and when you want to tell.

[El...]

I really like the advice about making your decision now based on how you feel now, and then leaving yourself free to alter your plan in the future.  You can share whatever you want, and expand that list if you want to do so later.  No one is entitled to know NOW, or to get upset that you didn't tell her earlier.  You are the one handling this; it is completely polite for you to do whatever you want.  

Big hugs, Quill.

[catz]

4 hours ago, Liz CA said:

I am a rather private person and guard the little privacy that we have these days. This is not how most people handle it. Paradoxically, I never think those who do share are too open, too whatever. Maybe they have more energy to deal with the fallout and have more courage than I did.

I would not announce anything (but I don't think others are wrong if they do) to any one who "does not need to know." And even that term is debatable. When I had surgery with early ovarian cancer 11 years ago, I told nobody except my dh and my best friend. My son knew about it too.

I didn't even tell my mother because I would have had to put up with endless questions and "oh my, oh dear..." When I was in the middle of it I did not have the energy to deal with other people's surprise and possible shock. We did not tell ILs either because I did not see any reason to worry anyone. Had things gone downhill for me, I suppose I would have had to say something sooner or later. If it somehow came out now, I could deal with it much better because it's in the past now - even though there is no way of knowing if something will rear its ugly head again or something new will crop up. 

All this to say I think you have a right to decide whom to tell and you need not make any excuses. If someone later finds out and comments on it, I suppose I would say something along the lines of "It was a stressful time and I had little energy / or needed to just focus on this one thing." The whole world is not entitled to every bit of news about someone.

 

I totally agree with most of this.  I think it's fine not to share if you don't want to.  If something compels you to share more widely later, that's fine too.  The only thing in this I don't necessarily agree with is that most people don't handle stuff like this with privacy.  I don't know if that's necessarily true.  I don't think you know if people are keeping the dark things in their life quiet because they aren't sharing them.   I think more people have blogs these days etc.  But I know people who don't too where I maybe just over heard they were going through some sort of crises but never got details.

Off topic, but I'm always surprised her when people seem to get jealous or annoyed of people's facebook feeds because it's all sunshine and flowers.  Well, the only things I share on FB are positive things.  I use it as a living photo album.  I have plenty of sadness and darkness in my life, but I don't necessarily have the mental energy as someone who tends toward depression at times to deal with everyone else's emotions on a topic.  I find it overwhelming.  I think I made one general post when my father died on my mom's request.   I don't assume people who don't share bad things aren't experiencing them at all.  I just assume for their own mental health they keep things closer to the vest.  

Edited October 9, 2018 by FuzzyCatz

[Loowit]

Like others have said, it is really up to you and what you are comfortable with.  When DH was going through cancer surgery, we didn't tell a lot of people ahead of time.  Part of it was that we didn't have a lot of answers until the surgery was done because that is when they biopsied and knew what kind of tumor it was and what stage.  After we had more answers then DH let people know.  He is now looking at having another biopsy on a different organ, and he is not telling anyone.  It is his choice, and I will respect that.

If you do decide to tell people, be prepared for really (at least to me) annoying responses.  DH got all kinds of "advice" from people that was really out there.

[fairfarmhand]

Also if you choose to share, be prepared for intrusive questions. I know several of the "old biddy" type who will nosily presume that they are entitled to every detail of treatment, side effects, etc. 

Honestly, I would not share this kind of news on Facebook. I really would rather people find out through word of mouth than to have it out there to every third cousin and acquaintance. But that's me. i just couldn't bear the well meaning questions and "praying for you" posts on my wall. I'd feel obligated to answer and respond, and I probably wouldn't want to.

I just made a note to tell my kids and dh that I forbid them to give private information to anyone if I have some sort of medical deal. One relative felt like she could give every gory detail about her spouses cancer treatment to every Joe Schmo that called. "Well he's not so good. He's badly constipated and had to go to the emergency room because the catheter wasn't working right..." No thank you.

[elegantlion]

It really is up to you. When I had cancer, I allowed my then MIL to tell her side of the family. She's a medical professional, so she was great about keeping nonsense at bay. 

I would suggest that when you feel like it, find some survivors to commiserate with. I glibly didn't think I needed a support group of any kind, but there were times I needed to talk about it with someone who wasn't themselves scared about my treatment. Now 20+ years later, I'm part of a facebook group of long-term survivors. It's refreshing in a way. 

My ex is a piece of work, but when I was going through tx, he was my guard. If I didn't want to talk to family, he took the call. If I couldn't make it into work, he'd call in for me. 

You will have good days and bad days, it helps to have someone that will listen and pass tissues on those bad days. But who you choose to let into that circle is solely your decision. 

 

[Guest]

I really greatly appreciate all the assurances in this thread. I have decided not to post about it on FB and I am also not going to worry about those “straggler” friends I mentioned. 

Interesting point, @elegantlion about a survivor support group. It’s not something I considered much and I brushed it off in my “Cancer Welcome Packet” (lol), but I might avtually consider it after all. 

[Murphy101]

You’ve told more than I would so that colors my perspective that you don’t have to share your health information with anyone you don’t want to. 

[HS Mom in NC]

SIL shared on FB and Caringbridge.  It worked for her. I have another FB friend who is sharing on FB now. Do whatever you want and feel free to change what you do as you see fit.If it were me I'd work through some worst case scenarios before I decided. How would I react if people made stupid comments? Asked intrusive questions? What about annoying advice? What if I had to deal with people  pushing their nonsense miracle cures that, "doctors don't want people to know about because it would put them out of business" ?  What if people spread inaccurate information? How would I react if people stopped communicating with me because they didn't want to say the wrong thing or were uncomfortable with illness?

[J-rap]

Do what makes you feel good....  No worries about etiquette!

I'm a private person so I for sure wouldn't announce it.  I'd figure it'd get around anyway, eventually, and that's fine too.

When my dh had his massive injury, my dd started a caringbridge page because he was so active in the community and that seemed easier than answering everyone's (concerned) questions all the time.  I didn't have energy to do it myself, so was glad that my dd did it for us.  I do update it once/year now.

[Storygirl]

When my mother had breast cancer, she did not tell anyone other than my dad and her children. It's possible that she told her employer, since she had to take a little time off for medical appointments (though she continued to work throughout). Her parents and sister were no longer living, so I don't know if she would have shared with them, but she did not tell my dad's side of the family.

From the perspective of the child of the cancer patient, I found it difficult to be under the "don't tell anyone" dictate, because I needed to talk through my own feelings about it. I happened to live several hours away from her, and my friends did not know her, so I did confide in them and ask for prayers. It did not affect her sense of privacy but gave me comfort.

So while I absolutely think people have the right to keep their medical information private, I think it's good to be aware that the loved ones also have feelings about it and may need a way to talk through them with someone. Each family will need to address this in whatever way works best, but I think it's something to keep in mind.

I'm sorry, Quill, and I hope your treatment goes very well. For what it's worth, I think you have already shared with more people that I would choose to, and you don't have an obligation to tell anyone else. Don't be surprised, however, if additional people find out through the grapevine.

[Guest]

14 minutes ago, Storygirl said:

When my mother had breast cancer, she did not tell anyone other than my dad and her children. It's possible that she told her employer, since she had to take a little time off for medical appointments (though she continued to work throughout). Her parents and sister were no longer living, so I don't know if she would have shared with them, but she did not tell my dad's side of the family.

From the perspective of the child of the cancer patient, I found it difficult to be under the "don't tell anyone" dictate, because I needed to talk through my own feelings about it. I happened to live several hours away from her, and my friends did not know her, so I did confide in them and ask for prayers. It did not affect her sense of privacy but gave me comfort.

So while I absolutely think people have the right to keep their medical information private, I think it's good to be aware that the loved ones also have feelings about it and may need a way to talk through them with someone. Each family will need to address this in whatever way works best, but I think it's something to keep in mind.

I'm sorry, Quill, and I hope your treatment goes very well. For what it's worth, I think you have already shared with more people that I would choose to, and you don't have an obligation to tell anyone else. Don't be surprised, however, if additional people find out through the grapevine.

Yeah, I realize this and it doesn’t bother me. I don’t really think it’s a secret, I just don’t want to feel as though there are all these people waiting for updates or wanting to be involved but I don’t really need for them to be. And I don’t want scrutiny of my decisions. Fortunately, most people have been helpful and have treated me acknowledging that, within certain parameters, the decisions are mine to make. Most of the people I initially told were asked to keep it quiet and not post on social media sites, because I didn’t want important people to find out that way; I wanted to have a personal discussion with them. So far that strategy seems to be working to my benefit. 

[chiguirre]

I'm just going to throw this out there. You may lose your hair and everyone will notice. Especially if you don't have many side effects and can continue your normal routine for the most part. My mom worked and kept up her normal life while she was doing chemo but she looked noticeably different. I don't think she could have just not said anything to people who see her everyday without starting a whirlwind of rumor. OTOH, Facebook is completely optional.

[Guest]

Here’s a funny PS: my mother is a total extrovert, in constrast to me. When she went through breast cancer, she stayed at my house after surgery. It was so striking to me because she called friends, call after call, day after day. She was constantly talking to friends! They were constantly coming over! And when she was not on the phone or visiting with friends, she had Christian music CDs playing in a continuous loop. 

It was just so different to me! I kep thinking, “If I just had my boobs cut off, the last thing I would want is all this constant commotion and socializing! Just let me curl up on the couch for a week in relative silence!” ?

[Guest]

4 minutes ago, chiguirre said:

I'm just going to throw this out there. You may lose your hair and everyone will notice. Especially if you don't have many side effects and can continue your normal routine for the most part. My mom worked and kept up her normal life while she was doing chemo but she looked noticeably different. I don't think she could have just not said anything to people who see her everyday without starting a whirlwind of rumor. OTOH, Facebook is completely optional.

Yeah; at the moment, my team expects I can avoid chemo. There are still a couple wild cards that could change that plan but my case does not present as the type that absolutely calls for chemo. 

If that changes and chemo is necessary then, yes, I assume hair loss and other side effects will make it impossible to carry on like nothing is different. I have long, thick hair and that alone would be an obvious change; even if I wore wigs it would almost certainly be plain to everyone. So in that case more people will simply need to know. It’s possible I would even use FB, just because it is the more efficient way to bring a lot of people up to speed at once. I would guess I could word it in a way that indicates I am happy with my team, confident in the plan of action and positive about the outcome. That would probably go far to keep people from being obtuse. Maybe?!

(Some people are obtuse no matter what. Also worthy of note: my obnoxious SIL has happily been completely silent; she has not communicated with me at all since learning of the diagnosis. So maybe prayer works and my prayer warriors have build a force-field that repels a$$hats!) ?

[Garga]

16 hours ago, Quill said:

I really greatly appreciate all the assurances in this thread. I have decided not to post about it on FB and I am also not going to worry about those “straggler” friends I mentioned. 

Interesting point, @elegantlion about a survivor support group. It’s not something I considered much and I brushed it off in my “Cancer Welcome Packet” (lol), but I might avtually consider it after all. 

 

I think not-posting is a good decision.  If you’re waffling about whether or not to post (about anything), then always don’t post.  If you change your mind and feel confident that you want to tell everyone, then that would be fine at that time.  But while you’re on the fence, don’t post.