I am wondering if you have posted your diagnoses on social media aka… Facebook, instagram etc… and how was that. Was it helpful or do you regret it?
Personally, no. I’ve very carefully curated who of my friends and family I’ve told. For me, it’s largely been down to not wanting to have every interaction with people be about cancer. Work and close friends had to know, and even at that I find myself getting annoyed with people dropping me a note asking how I’m doing - I know they’re being nice, but I find it tiresome.
Ultimately, though, it’s entirely up to you and how you feel about it. I admire greatly people who allow others to follow their journey on social media, it can be very helpful to others. But it’s only for some folk.
I did post something on Facebook after my operation, but it was in the context of doing Race for Life so many people didn’t pick up on it.
For me its a definite no …I would never do this…my privacy is very important to me… …but then I don’t post anything personal outside of cancer, either…but we are all very different
@Lololauri I have posted at several stages about my cancer. It is a rediagnosis for me and all my friends and family know o had cancer eight years ago. I live in a small rural village and at the beginning some people knew I had be rediagnosed and I knew I would lose my hair etc and so felt it was easier for me just to say it on fb so that people were not shocked when they saw me. I’ve had a huge amount of support and don’t regret it at all. But it’s not the way to go for everyone, we are all different and cope with our diagnosis in a way that we are comfortable with and what works best for us.
Hi
I’m with bookish. I won’t post on social media as there’s a limit on who I want to know and how unsettling (at best) all those bland comments and hearts you get when you post something so earth-shattering are (or worse, noticing who hasn’t responded at all!) I did post when I got the all clear from primary bc in 2019 and it was quite liberating, searching out a suitable illustration rather than my sparsely-clad head. I enjoyed the responses and didn’t care who ignored it because they didn’t want to spoil their shiny happy lives (there are friends who turn out to be like that).
I haven’t posted about my new diagnosis as I’m ok with people knowing I have bc again but don’t want the awkwardness of people trying to address the elephant in the room. This is too big and too personal for that. A select few know from me in person but I don’t feel social media are the right platforms for something so intensely personal and unpredictable.
I have, though, found my personal but public blog incredibly helpful. A few friends read it, most choose not to, surprisingly. Most readers are accidental discoverers from all over the globe or people from here, which is heartwarming. It helps me frame my thoughts in a way that makes them publicly acceptable and enables me to make sense of things for readers (and therefore myself). I can also have a safe rant! I’ve maintained that since my first chemo, Christmas Eve 2018!
I posted on Instagram last week when I was in A and E, I felt scared and alone and wanted to get out of the room I was in and just go home… so yes, I posted on there because not everyone on my Facebook is on there and it didn’t feel so personal if that makes sense. I got alot of beautiful caring supportive messages and it definitely helped take my mind off of the panic I had been feeling I followed someone on Instagram who went through chemotherapy and all their ups and downs and it helped me to support someone who was going through it and also helped me get my head around doing it myself if needed down the road, which it is, start 6 x Docetaxol Herceptin and Perjeta on the 2nd of March
Susan xx
I posted something similar to you a few weeks ago. I was diagnosed early January and had my lumpectomy and node removal over 2 weeks ago and know that I will be having chemo, herceptin, hormone blockers and radiotherapy and don’t want to let the fact I’ll look different stop me leaving the house because I’ll have to address questions.
I have a big group of friends and family and everyone I want to know knows, but my thinking is that if i put it on social media, I have control in a situation that isn’t feeling like I do.
I already feel like hiding incase I see people so just trying to gain some control in a crappy situation!
Hey there, I just wanted to chime in and say that I totally understand where you’re coming from with using social media to connect with others going through similar experiences. Also, I came across YoYo Media while browsing, it’s an SMM Panel that could be helpful if you want to expand your reach and connect with more people in your community. I haven’t personally used it but i thought I would mention it here just in case you haven’t heard of it before. You can check it out at yoyomedia.com if you want to know more. I’ve also found Instagram to be a really valuable resource, especially when it comes to following people who are sharing their own experiences with breast cancer.