Every time I sit down to write an entry, I get sidetracked. I think I’m becoming ADHD by working from home. It’s just too easy to flit from task to task, place to place, work to personal stuff…
Regardless, a couple of you have asked about the cancer patient who reached out to me for support and then snubbed me several times.
After my own diagnosis, I was so shocked and lost, trying to navigate the spaghetti tangle that is information online about cancer. In sharp contrast to my carotid artery dissection diagnosis (for which there is limited information anywhere - it’s a somewhat rare issue), the absolute flood of cancer information overload was a stark contrast and had my head reeling. And I was beyond confused. I needed someone to explain it to me like I was five years old.
That’s when I learned the magic of social media, and Instagram in particular. I looked up hashtags for colon cancer and found organizations, and that’s fine and good - but when I started clicking on actual human beings going through treatment (and sharing their experiences online), that’s when I started to understand how powerful this social media tool could be.
It took me some time, but after finding dozens and dozens of people who looked like me (my age and younger - not your “typical old man with colon cancer”) - some who seemed like they were either at the same stage of treatment or a little further along than me - I DM’d a couple of women who looked as though they were gracefully moving through surgeries and then chemotherapies and even radiation treatments.
Little by little, I poked my head into this world, and lo and behold, the people I reached out to were literal life savers. They offered words of advice and encouragement and even asked me to share my experiences with them. Soon, we were more than penpals - we were each other’s lifelines.
One woman in particular had her chemo treatments scheduled one day before my cycles were scheduled. That meant that I could wish her good luck on her days, and she could wish me good luck the following day and tell me how she was feeling and what she was going through. And we quickly found a third woman who was right behind the two of us. We became cancer buddies, sharing our stories and experiences, though one of us was in Canada, another of us was in Georgia, and I was in [my city]. We’d post stories of ourselves with our chemo pole selfies and tag each other to wish each other the best of luck on our chemo days.
Soon enough, I found myself with dozens of fellow cancer patient friends all over the world. Several men joined my circle too. I was messaging multiple fellow cancer patients a day and we were all going through the same experiences. I was grateful for their messages when other people really just didn’t get it. Sure, I had friends and family supporting me the whole time (and I’m beyond grateful for their love and kindness), but unless you’re going through the thick of this hell, you really don’t get the full effect.
ALL of that to say, when I found myself on the other side of chemotherapy and in a good-ish place, I also found myself wanting to help others going through the same thing. Several people reached out to me for help with their own family and friends, and thus began even more cancer relationships via text and phone calls, and that’s when I knew it was super important for me to pay it forward with anyone who wanted or needed support.
You may remember me writing about how I erased a lot of my cancer posts on Instagram when I found myself unemployed in 2022 (shortly after my active treatment was done). I know it’s not legal, but companies see cancer peeps as a risk. I found it hard to get interviews and I also know that HR personnel definitely look at socials. I tried to wipe that phase from the public eye in order to find a JOB. It sucks so hard that our medical insurance is tied to our places of employment here in the United States. And I NEED medical insurance! So…most of my public traces of cancer disappeared.
But I kept my cancer friends and little by little, and after a few years, I found myself more comfortable posting again about my experience. After all, it’s been a very important part of my story.
And occasionally, people will find some of my posts or see a comment I’ve left on someone else’s post and we’ll start following each other and even noting each other.
This happened a few weeks ago with a woman I’ll call Emily. I don’t even remember who found whom, but I remember seeing a few photos and then one day, a message from her popped up in my inbox.
Emily asked me simply, “How did you get through treatment? Emotionally, I mean.”
And my heart just flooded with empathy for her. I could just feel she needed support pretty quickly. The vibe just felt so strong.
So instead of tap, tap, tapping out a long-ass response, I decided to walk and talk (I was on my long dog walk), and I left her four or five voice messages telling her from start to finish about really leaning into the friends and family who want to help and not to feel guilty about it. and I added little details about the things my beautiful circle of folks did to support my experience. And I told her that she’s likely still in shock simply from the diagnosis and told her that it’s okay to get through your treatment in a disassociated daze.
I then apologized for spilling all of that information all at once, but I also told her about the circle of internet strangers who became cancer friends and were able to make the most out of a very dark experience.
AND THEN! I went back to her page and found her linktree. And I poked around on there and found that she’s been writing in a Substack account. And she’s an incredible writer! She’s blogging her whole cancer experience and it’s written in a beautiful way.
So I sent her one more message, telling her that I am blown away by her writing and told her that it’s the best therapy and to use her writing as a tool to release things she’s feeling.
And I got crickets.
Nothing back.
Which, I get it - when you’re going through the whole cancer thing, getting back to people is not necessarily a priority. And I expected nothing in return, except maybe a read receipt, ya know?
But I kept following her and watching her stories. I knew she was watching me too.
She started chemo. I watched her stories quietly. She noted in her stories, and even in her Substack writings, that she feels so all alone - that nobody understands. She wrote that even though she has a loving and supportive husband and parents, that she really wanted messages and phone calls from friends.
Now, in my book, internet friends count, but maybe not in hers.
A week or so later, she reached back out and messaged that she’s going back in for Round #2 and asked me how on earth I got through chemo.
I paused a minute and then thoughtfully typed out several messages. I got through all of my chemo sessions by doing things like:
But she stopped me at the 3 week thing because I found out that she’s not on the same treatment that I was. She’s actually on something different since her staging was different than mine. She is stage IIIA (and it might even be rectal cancer). I am stage IIIB (colon cancer). And the difference in treatment is significant.
So she asked me how many rounds I did, and when I said 12, she told me that I was a rockstar and that she was doing 4 rounds and didn’t think she was going to live through them. She said she couldn’t believe the people who had to go through TWELVE ROUNDS of HELL.
I didn’t have the heart to write her back to say that there are some people I follow on IG who have just gotten through their 100th round of chemo!! That would have blown her mind!! But I also didn’t want to start talking about the threat of metastasis, either.
So, I let all of that go, too. And I quietly watched her page.
And then the night before her second round of chemo, her stories started exploding with cries for help and how-am-I-going-to-get-through-this and “I NEED FRIENDS!” and page after page of “I wish my people would reach out!”
And that kind of hurt because I’d been trying to be there for her, but she obviously discounted everything I had to say. I always considered my instagram and internet friends who reached out (and still reach out to this day!) to be absolute lifelines - sometimes even more than my IRL people!
So then I clicked over to her Substack to see if she’d written over there, and she had. She was saying the same things - “nobody is reaching out to me…nobody cares!” and, “I’m going to be scarred for life!”
So I left her a note describing my experiences with cancer PTSD and followed it up with my thoughts about PTG (Post Traumatic Growth, which I’ve written about a few times before), and she was offended because I worded my comment in such a way that may have sounded like I was telling her that it’s a choice to either be traumatized by cancer or to grow from it. And that’s not what I meant at all!
At that moment I realized that she was going to either argue with me the whole way through her treatment or complain the whole time that no one cares, all the while reaching out to me to ask more questions and then disagree with my answers and my way of support.
This was a no-win situation. And it hurt my heart to do this, but I had to block her. I couldn’t get through to her in a way that didn’t seem to hurt us both. She was reaching out to me, but then lashing out AT me at the same time…and pretending that I didn’t exist!
I realize that some people think that no one is real when they are behind a keyboard, but we know differently, don’t we, PBers? Especially those of us who’ve met in real life. We are humans. We are not AI (well, most of us, anyway). We have feelings and we do our best.
I’m sad because it is an important mission of mine to help my fellow cancer people, but I’m also still very much going through it myself. I’m not out of the woods yet. I still feel the need for support sometimes. And I don’t have the energy to push to support someone who rejects it every time.
I wish her nothing but luck, health, and a very successful outcome. And I know my wishes will land on her silently, but just as powerfully.
xo,
GS
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