How much do you share on Facebook?

[jgall]

I'm curious about something. To set the stage, I only have people on Facebook who are actual people I know and care about. My settings are private, so only friends can see my posts. Historically, we have not made cancer a facebook "event" but I do occasionally post something about it, and always post a link to our caringbridge site when DH posts to it.

Over the course of the last few months, we appear to have been turning a bad corner in the journey. We both know the most likely outcome and I am heartbroken about it. This weekend we ended up in the urgent care and it turned out that the tumors are starting to block the bile duct in his liver. With DH's permission, I posted the following to FaceBook: "Seattle to NYC to the urgent care. Not the way we wanted to come home. Chris is basically ok but some tumors have started to close off the liver bile duct. Stent will be placed early this week but for now it's not critical."

Then last night I got the following emails from my mother-in-law:
via private message in facebook:
Please do not post things of this sort on Facebook for MY sake. I CAN NOT stand the whole world knowing some of this stuff...........

via email to me:
I can not tolerate the recent type of info posted on Facebook about Chris. I consider most of it to be private information for certain people, not the public.
I know you guys think of it differently, but please be considerate of my feelings.
I can not handle it!!! I appreciate the care and concern you and your friend have for Chris and his cancer, but I can not handle this.
Caringbridge is one thing, this is another. Set up a separate grouping to sent this type of message to, not semi-public forum as on Facebook!

I wrote her a note telling her there was a simple solution and then I deleted her from my friends list. Obviously, as with all family drama, there's a lot of history here that I couldn't possibly cover here. Suffice it to say my MIL is incredibly self-centered, but I know she loves her son. In all the 16 years we've been married, she visited us once before cancer, and since cancer about 3-4 times. The biggest problem we (and all her children) have with her is that she's incredibly bossy and is always telling us the right or wrong way to do everything. DH and I have discussed the end-game, and sadly one of my biggest concerns is how to handle her when the end is near.

I suppose I'll be here posting about that in the future seeking everyone's support and guidance, but for now I'm most curious about what your opinions are about facebook and cancer?

Julia

[Carolinabluetec]

I don't have a Facebook account nor do I do anything on "general" social media sites.

[vilca11]

I do not have a Facebook account or participate in social sites either... There is Skype and possibility to share with your friends and relatives what is going on with you on that much more private and personal level... I think, Facebook, etc is just a huge window for the whole world into one's life. I also think, that both cancer patients and their caregivers have very little time to spend it on such media. And, in general, I do not understand, what good does it make a person feel to tell everyone everything? I certainly do not believe in this kind of sharing.... May be I am just old fashion person, but a private handwritten letters disappear with the emergence of the emails and now all this media - the world becomes more and more superficial, less and less private, the feelings and relationships "cheaper" in value, etc.. I personally do not want participate in such a "bazar" of personalities... No offence, please, jmo
Vilca

[texazgal]

If, as you said, you have the privacy set right and only friends can see your posts, there was nothing wrong in how you posted. Friends want and need to have this kind of updates to prepare and support you two. I don't think your MIL understands that this is more private than she knows. Maybe her account is not set to be private and she thinks everyone can see yours as well. I don't personally post much about my cancer as I hope it is 10 years in my rearview mirror. But a cousin who also had colon cancer before me(and beat it) is recently dxed with mouth cancer. We were just commenting between us this morning. Nothing wrong there. your MIL sounds like a drama queen and deleting her was probably wise, if she can't deal with it.

[JDinNC]

I do have an facebook account....but I will not post anything regarding my personal life. I feel that the only people that needs to know about my Cancer are my family members and very close friends. And if I don't talk to them by phone or FaceTime then they are not important enough to know about my health especially from Facebook

My husband is wrapped up in Facebook blogging and has posted everything regarding my cancer. Needles to say, it has upset me very much because this is my personal battle and I don't feel the whole world needs to know. I'm sorry, you might have a private account but this doesn't stop your friends from posting it on their Facebook page.....

[cathy123]

I have chosen not to put anything on Facebook because I dont really need high school friends from 25 years ago to know and because I don't want it on my public record in the future for job reasons. But if your husband is fine with it I think it is his and your decision not anyone else's.

[elise]

I post a little bit on Facebook but not a lot. Personally I find my caring bridge account to be a better place. But I certainly don't think that your post was a poor choice. It wasn't full of drama or anything! Do what feels right to you and use the unfriend button liberally!

[Julie YW]

Hi Julia,

Since I'm one of yours and Chris's Facebook friends, I very much appreciate any and all updates you provide about Chris. I'm the wrong person to ask about privacy issues, since I blog about my cancer travails. My mother would be appalled at what I share with the public (if she could read English). We've always disagreed about privacy issues. In my personal opinion, hiding means shame and I refuse to be ashamed of being sick or feel like I did something wrong. For me, hiding and keeping quiet is giving power to the cancer. I wrote about this early on in my blogging. You can read it if you're interested. Ultimately, what is to be shared is about Chris's comfort level and your MIL can just accept or not.

https://julieyipwilliams.wordpress.com/ ... not-crazy/

Recently, when I went back to Southern California for 2 days for a wedding in San Diego and posted pics of me with my brother and nephew (you may have seen them), my parents told me I shouldn't post stuff like that in the future because certain relatives would be offended that I hadn't visited them while there. I yelled at them and they shut up. I told them if anyone has an issue with what I'm doing, they can say it to my face. Stupid crap.

I'm thinking of Chris and wishing him the best possible outcome (even if I don't comment). He and I have had some nice chats along the way and he's been so supportive of me, which I of course appreciate deeply.

Julie

[skypup]

Sounds like MIL is ashamed that someone in her family has cancer. Tell her to find one family who hasn't been affected by cancer, and if she can you might reconsider going into "hide" mode.What a dream she must be to have lived with! I love it that you unfriended her...

[ams5796]

It's a matter of personal choice. (and especially your husband's choice) Some people get support from posting personal information on social media. And, I'm sure folks feel that it's a convenient way to get information out to a lot their friends, family and acquaintances at one time. I'm not one of those people. I have never posted anything on FB about my cancer. I feel that there are a lot of other places online (such as this site) to get support. The people who I want to know about my situation I tell by other means.

Ann

[ziggymonster]

I think posting on Facebook is a personal choice and what you post is a part of that. As Julie said Facebook can be a valuable conduit to get information out...just control your privacy settings. First change eliminate your MIL !!!!! In my view it is not her business who you share information.....if she can't stand it then don't look at it....end of story.Chris is a grownup and not her little boy anymore !!

[BrianMc7]

When I started all of this, I made the decision to go all open about my CC on Facebook. I have a pretty tight list of friends on FB. These are people that I have shared some meaningful time with, even though I may have not seen them in over 25 years. I opened up my profile so that all can read about. I sent out a blast email from my linkedin account basically saying what I was going through and if they wanted to keep abreast of the situation they can go to my FB page. I did this for the following reasons:

1) at the time I was completely numb and wanted to write about what I was going through. Some suggested CaringBridge, but since I was already pretty out in the open on FB, I decided to go that route.

2) Advocacy. I do not want anyone I know to have to go through this. So I wanted a platform to encourage my family and friends to get their colon's checked out.

3) I have found out too late about 3 people that I've known during some part of my life passing on. Had I had known, I would have reached out to them. I wanted others to have the ability to do the same with me.

I have received so much love through my honesty on FB, that if anybody complained to me that I was sharing too much, I would bring up my FB page and ask them which "friend" I should apologize to for having been so open?

Brian

[KWT]

The only safe thing to do on Facebook is post pictures of your pets and what you eat at every meal.

[Voxx66]

I post what I feel like posting. Sometimes that is an update. Sometimes it's a complaint. More often it's a cryptic comment. I have some friends who are very interested and others that would prefer to pretend it isn't happening. The easy answer is just like on here: Don't read a post/discussion that offends or annoys you.

[DK37]

In terms of FB, I think the only "right answer' is YOU do what YOU are comfortable doing. Of my CRC friends & their significant others on FB, there is a wide spectrum of the choices they make. If any friend is uncomfortable with what you chose to post (cancer or otherwise) they can easily "unfollow you" or unfriend you whenever they want. Problem solved.

My personal decision (where I ended up on the spectrum): I agree with BrianMc7's comment - I am very open with my CRC (in person, in email, on FB, speaking engagements in front of hundreds of people, videotaped, soon to be Colondar model) for many of the reasons he stated. When I was Stage 3 and my cancer news was pretty sporadic, I used FB to keep people up to date on my cancer situation details like quarterly. Now that I am early Stage IV, I have many more personal cancer updates, so I decided to split my posts. I still make general CRC posts on Facebook (I am very open about my disease and very pro-patient advocacy!) but in terms of my medical update details, I use my public blog - and then I do a short post on FB e.g. something like "I just posted a medical update on my blog for those of you that want to know the latest details (and paste the blog hyperlink - the automatic preview blurb gives them an even more specific view of what my blog post is about). Then they can chose whether or not to click & read. BTW I intentionally chose a public blog instead of a private one because early in my diagnosis I actually was helped A LOT by reading public cancer blogs - so I wanted to give back to the cancer community when it became my turn to choose...

I don't let cancer 100% define me - so I kind of have two groups of friends on FB - those that I e.g. chat music with (my hobby) etc etc etc "social" friends (life goes on...) and a larger group of closer "more serious" friends. My rationale included that I knew I had some close friends/family members that had had a lot of cancer pain in their family - they care about me & support me in my cancer journey but hearing too many details brings up too much pain for them. As an example, my Sister & I both were end-off-life caregivers for our Mother as she died of cancer. My sister loves me but there is a lot of remaining emotional pain for her from that care giving and now her little brother in serious medical trouble. Even though she is my Sister & she loves me, in general she doesn't read my blog - she calls to see how I am doing & to hear the latest "big picture update" but she emotionally can't handle hearing every little detail of my disease. I try to be understanding of her (and I know some other old friend's) emotional scars along those lines. But they are in the minority, a majority of my FB friends do read my blog

That was the compromise I personally made but I say clearly - everyone's posting decisions are up to THEM, not up to a mother-in-law (to use an example...) - most of your closest friends will want to know the details of what is going on in your & Chris's life so that they know how best to support you! My current system works well for ME (at this time) but I envision the possibility of a later time when like you, my wife will be posting updates on me on FB because it is a fast & easy way to disseminate important information efficiently to all the people that matter most in your lives. At this time point, I think you are doing exactly the right thing Julie!

-Tom