#TMIFiles: The Socials in These Foolish Things

  • April 28, 2021, 10:54 a.m.
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  • Public

Glorious Off-Week Wednesday!

I have a whole week until my next chemo infusion and I couldn’t be more happy. It’s the in-between weeks that give me life and then during the infusion week I know that the in-between week is coming and that gives me life. So many little things giving me life!

I’ve been doing a lot of connecting with fellow colon cancer patients on social media because it somehow helps. I think it’s that I’m finding people who can relate to this very specific issue. I suppose I’m just looking for…well, I’m not quite sure…a sense of normalcy in what feels something like uncontrollable disorder in my life?

I’ve found several people who are a couple of steps ahead of me in their treatment, and I find myself watching their posts to see how they are faring and what they are doing that brings them joy. Or comfort. Or other things.

Today, a woman I follow had a rare moment of “why me” during her workout (she’s doing this incredible fitness program while she goes through her chemo treatment - WOW!), and she cried right in the middle of lifting weights and then posted it, and it made me just tear up in solidarity with her.

Yesterday, I messaged a guy who is battling stage iv and had gone in for CT scans after 6 rounds of chemo. His scans show that his metastasized tumors are shrinking and some have gone away - that means that his chemo is working! And he was heading into his 7th treatment and got emotional and posted it and it moved me to the point of crying tears of joy for him.

Anyway, he’s doing the same icing treatment that I described in this entry (about halfway down), and has done it for seven treatments now and I had some questions for him. He was soooooo incredibly generous with his information. He took time to send me videos in my DMs to explain what he was talking about rather than trying to type it all out on his phone.

Amazing.

And yet. I find myself sort of cringing sometimes when I go on FB because I’ve also signed up for special private groups to get information on how to deal with chemo side effects and techniques to try, etc. and find so many people are suffering and confused and in pain. I am thinking of somehow muting some of that noise so that I only see the helpful information. Reading about suffering does not help. Reading about suffering makes me suffer.

It’s interesting the difference in socials when researching cancer.

  • Facebook has typically older, typically frantic-leaning or worried or confused seekers of information and a LOT of people spouting off almost too much information.

  • Instagram has people my age and younger going through treatment and posting real, sometimes very raw, mostly extremely helpful and uplifting (sometimes even funny) information.

  • TikTok has a younger generation going through treatments, and though I don’t really participate in Tik Tok that much, there’s some good info there, like informative videos on what to pack in the bag that you take to infusions and how to deal with chemo hair.

I know I spend too much time on the socials, but I swear they’ve given me such helpful tips and tricks and much better understanding of what’s happening with me. It’s also a good outlet (like this is), for me to post my own story and my own information so I can let my friends and family know what’s going on.

OK. Gotta get going. Prepping for meetings and need to get a walk in at lunchtime and thinking about ordering lunch at the Lebanese restaurant down the road…yum.

Love yous!
GS


Invisible Me April 28, 2021

Good luck. Keep fighting.

Dana by Night April 28, 2021

After my mom's cancer, she gave me this advice: She said if you get sick, make plans and look forward to doing them.

Deleted user April 28, 2021

Taking what you need and leaving the rest is an excellent strategy.

FWIW, I ran into the same thing on Facebook in groups about birds, so it's not just you or cancer groups. Every day there would be posts like, "my bird is doing this, what does it mean?" and "my bird is fluffed up on the bottom of the cage and having a hard time breathing, what do I do?" Between my own impatience (Oh, your bird is FLYING? That means it's a bird!) and the heartbreak of seeing posts about birds for whom I know it is already too late and the inevitable rest-in-peace post a day or two later--both of which usually had me frustrated with wondering why the hell they didn't they do at least some rudimentary research about birds and their care before getting one--I had to bow out. I have a lot of good information to give but I find the audience on Instagram to be much more engaged and educated so the information isn't lost on them. Sounds like it's the same with cancer.

Jinn April 28, 2021

Whatever is helpful to you or comforting is wonderful. Go for it. Hoping you can avoid whatever is not . ❤️

colder April 28, 2021

The socials are gross outside of Insta, I agree. I'm glad you are finding some helpful people and community there!

Complicated Disaster April 29, 2021

People spouting off too much information on FB??? I find that hard to believe!! :-P xx

Ginger Snap Complicated Disaster ⋅ April 29, 2021

hahah! Right?

Marg April 30, 2021

When I was going through the worst of my illness and stuck in bed weak as a kitten and only sleeping an hour a night, I would go on one particular forum to connect with others going through the same hell. It helped so much. But once I started to get better I couldn’t face the pain and agony people were going through - it brought it all back and I didn’t want reminded. I have messaged a couple of people since but still can’t trawl through it and I feel rotten about that. So I get that bit. Enjoy your infusion-free week!

Kate May 04, 2021

I guess there is a community for everything. Facebook can be so toxic. I'm glad you are cutting that out of your consumption. Support and information is NEVER a bad thing. You are so strong, you know how to take care of yourself. I am really, really proud of you. Love yous, toos.

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