Social Media

skittenskitten Member Posts: 5
Hi :)  I'm new to these forums, so hopefully I'm posting in the right place!  I did a quick search and couldn't find anything else on this topic.

The first post on the Being Young thread mentioned the idea of "coming out" on social media.  I'm struggling with that at the moment, and was just wondering what other people have done?  I'm coming up to my 2nd chemo session, so my hair is currently at the falling out stage (we shaved it last night) so it's getting pretty obvious now!  But I feel uncomfortable doing an announcement type post on facebook, just imagining the kind of sympathy responses it would get.. but I also feel weird making it some kind of secret, which seems to be the only alternative.  What did you do?

A bit about me.. I'm 34, and have 2 little kids.  My bc was stage 1, grade 3 triple negative, I've had surgery and am 1/6 through chemo.


  • Molly001Molly001 Member Posts: 419
    I, too, wasn't keen to share on social media. I'm a bit shy & don't love attention, let alone sympathy. Honestly, I don't feel distant FB friends really need to know, not that I mind if they do, but I feel no need to share. Having already told my close friends & fam I simply posted a pic of myself & my daughter doing something cool whilst wearing my chemo turban. People can make of it what they will.
  • skittenskitten Member Posts: 5
    Thanks so much for your replies.  I think I will do a photo tomorrow when I have my second chemo, and just keep it light and positive.  I love your idea of encouraging people to get checked, definitely adding that!

  • LucyELucyE Member Posts: 295
    edited June 2017
    I avoided sharing too much on Facebook as my family was reading it and I worried that it would distress them. I just texted/ phoned people who I wanted to know about it. I found moving on from cancer with workmates and friends was easier without sharing on social media. It also opened up some space to focus on other things. :) It's just the way I approached it. I only have 2 photos from chemo and I like it that way. 

     I have had a number of people in my family affected by cancer so perhaps this affected my decision making. I was pretty up front from the start with workmates and friends, then kept what I wanted private. Best of luck. x 
  • gurneysgurneys MelbourneMember Posts: 224
    Hi, I approached it a little differently. I did announce it on social media. My reasoning was that I didn't want to have to repeat the news over and over to people's faces. That would have been too much of an emotional nightmare for me - to see that look of sympathy etc over and over. No, I had to do it all in one (after telling my family personally of course). I wanted people to know - to know that I wouldn't be myself for a while, that my husband was going to be carrying a huge load for a while, that we would probably need some help, that my two kids would need a distraction every now and then, that it wasn't a topic I wanted people to avoid with me, I wanted people to talk to me about it, to ask me questions, be open. It was never going to be a taboo subject with me. I needed people to understand, to be aware. It was a very personal choice to do that - a well thought out one that I discussed at length with my husband. It's not everyone's choice but it worked for me. Best of luck.
  • Molly001Molly001 Member Posts: 419
    Well done @gurneys. Making your choice must be a huge weight off your shoulders. And you've probably increased your support networks too. Each to their own, it's whatever you're comfortable with for sure.
  • skittenskitten Member Posts: 5
    Thanks for all the replies!  I did end up doing a short and light post on facebook, I had a lot of similar thoughts to @gurneys

    I didn't want it to be a secret, and because of the hair loss it's so obvious to everyone that you can't really hide it.  So rather than suddenly wearing scarves in photos here and there, and people wondering and talking about without talking to you directly, I just wanted to get it over an done with in one go.  Made me anxious doing it, but so much better now it's done!
  • gurneysgurneys MelbourneMember Posts: 224
    Well done, @skitten. It worked really well for me, opening the door for people to talk openly about it with me. It actually lightened the situation for me - removed the 'stigma' a little and lessened the nervousness that people felt around me. Don't get me wrong, I fully understand why some people choose not to let people know and keep it a private matter. I get it 100%. But this is what worked for me. I also have two little kids and I needed all the help I could get! Best of luck with it all.
  • LucyELucyE Member Posts: 295
    edited June 2017
    Good on you @skitten, it's good to do what suits you. I let everyone know, just in a different way. You can also limit the privacy on your FB page. I have encountered some discrimination at work from my boss since having cancer (I worked the whole way through) and a lot of people at my work are on social media. It shouldn't be that way, but it can be at times. 
  • Kelly88Kelly88 Member Posts: 5
    Well done @skitten. It does feel like it should be private journey, however, from having tumors when I was 14 and 26 and I didnt tell anyone, it was sooooo much harder. I had invest mental energy in keeping it from people.  And having those inner thoughts of 'if only you knew what I am going through'.
    I am glad that you were able to share what you are going through and encourage people to get checked.
    I have been pointing people to the pink hope charity, as they assist people like us (I am assuming you are under 40, I am 29) who are in the younger group get checked and know more about their breast health. 
  • SalpalSalpal Member Posts: 43
    This has been on my mind too. Thank you for asking the question and thank you for the tips. I, like others do not want to keep repeating and it is overwhelming.   
  • LarabarLarabar Member Posts: 4
    I couldn't keep up with the updates to people almost instantly after/during being diagnosed. I didn't want to tell everyone either so announcing on Facebook wasn't an option at the time (maybe later). 
    A good friend of mine who's been struggling with cancer for a couple of years suggested I set up a Facebook group with "secret" security level (meaning I invite certain people and no one else can even see the group). I did that. 
    first I sent a message to people explaining that what was happening and that I was adding them to a group for updates. 
    Then I only posted 1 update in the group. 

    This really helped me. It may not be for everyone. But my mind was in shock and I just couldn't manage the replies, or remembering who I'd told what. It got too much too fast, and the group made it easier. it also gave me a forum to write about how I was feeling and purge a little. 
    i guess it just depends on who and what you want people to know. 
  • ChipoChipo Member Posts: 20
    Wow you lovlies are brave . I unfriended everyone on face book including relatives . l was going through a phase .( had a tantrum ) . 
  • InkPetalInkPetal You are valuable, beautiful, extraordinary.Member Posts: 499
    Yeah, dealing with this online social presence it's a brand new hurdle and heck how do we do it? It varies so much from person to person. There are those who want everyone to know and hear about it and those who would rather not invite the fuss. It's hard to find a middle ground because once you've opened the packet you're going to eat all the Malteasers. My Facebook announcement came in the form of a haircut update, with no explanation, and a lot of people hadn't put 2 and 2 together before I made a post about having an all-clear at my first review. My openness changed with the platform; Facebook heard nothing but anyone following my Instagram (mostly strangers) got full updates. To be perfectly honest, I wish I had made YouTube diaries, just in private for myself and eventually for anyone who might need one [Hey, what was your first chemo like? Well, it was like I said in this video]. There's no right or wrong way to handle this stuff, just do what you're comfortable doing... nobody is forcing you to share anything, although it can feel that way. 

    One good option might be to start a group chat with people who you want to be in on anything that's happening. There's no real commitment there and that way you don't have to say the same thing ten different times. You can always be more public once you're comfortable with the idea, that's what's important. :heart:
  • nikovnikov Melbourne, VICMember Posts: 81
    Okay, so I may be a little late in posting in these forums but my God do I have so much catching up on. I've been super active on social media regarding my diagnosis. Like many of the other young women who have commented on this, it vary's from person to person. I am yet to meet another young women at my age with microinvasive DCIS so I used social media (Instagram) as a platform to voice my journey. I think it's really important especially for young women to reach out to each other young women regarding their experience. No journey is exactly the same but it's the whole "hey, she's going through something too...and she's young". I noticed on Facebook (I don't have it) but some people are more likely to get negative responses then on the IG. If you have IG, what's your handle? Would love to send a follow :) 
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