Ebb and Flow; A Critique of Social Media

I’ve written before about the pros and cons of social media. A while ago, approximately 6 years ago now, I deleted all of my social accounts. I only really used Facebook anyway and never had a Twitter or Instagram account. It was a very liberating process for me. I was never too into these platforms, so I didn’t find it too difficult to split with them. The anxieties mainly came from wondering whether I would have kept the social connections I had alive without it and whether I’d miss the random photos I was tagged in, the events that people plan etc. None of these concerns really materialised in the end. My relationships needed to mean more to me than indifferently scrolling through a newsfeed, getting updates on people’s lives that I mostly knew via tenuous links and convincing myself that the relationship was somehow meaningful. In reality, I decided that I needed to nurture the relationships that mattered and allow the others to drop off. I slowly realised that part of the con of social media is this idea that you constantly need to be involved in everyone’s lives all of the time. You don’t. I seldom speak to some of my best friends, and all that means is that when we do speak, we have a lot to talk about. We don’t need to constantly message or update a status to keep our relationship strong and meaningful.

However, with a desire for this blog to reach as many people as possible, I created a Twitter account. This was new ground for me. I’m not sure why the idea of Twitter appealed to me more than the other platforms; I just knew that I couldn’t be bothered to manage multiple social accounts. It’s hard enough for me to want to log in to one and post regularly, something which I most definitely do not do. Each time I write a blog post, I write a blurb on WordPress, and it is automatically posted on Twitter; I rarely post anything outside of this process. I try and check it each time I open up my laptop, though, to respond to any comments and look at my feed a bit. I follow a few people there, and I like to see how they are doing. Most of them are involved in pancreatic cancer in some capacity.

The draw to particular accounts on Twitter may be for a variety of reasons. Sometimes it is because someone has survived cancer, sometimes it is someone who has been fighting cancer for a while and so have good knowledge to share in their posts, sometimes it is a researcher posting about cancer. I do follow some accounts for other purposes, such as Artfinder, a website where you can buy art from individual artists, which I absolutely love; still, the account is primarily to engage with an audience about cancer, so I mostly keep it to this purpose.

This is where the pros and cons of social media come back into the frame. A year ago, I would have debated all day and night that social media only has cons; I still mostly have this opinion, if I’m honest. There are so many things about social media that I find terrible. One social media platform (of sorts) I have never managed to delete is Youtube. It is a bottomless source of entertainment, mostly mindless. I watch some educational stuff on there, too, such as The B1M channel, which produces fascinating videos on engineering challenges and successes around the globe. 95% of what I watch on there, though, I could stop watching today, and all it would do is grant me back time to commit to more productive hobbies I have such as reading, cooking or, basically, anything else. Sometimes it is valuable to just sit down and watch something mindless. I spend approximately 2 hours on Youtube a day, though, a lot of this time in lieu of watching actual TV. I’d like to bring it down a bit, at least on days when I’m not feeling devoid of energy from the chemotherapy.

A significant con is the commentary that you see on social media, in my humble opinion. There is something about being a faceless individual armed with a keyboard that seems to turn people into psychopaths, incapable of being reasonable and of displaying empathy. Similar to the effect that driving has on people – clutching a steering wheel also manages to turn reasonable people into ego-maniacs who can do no wrong, blaming the external world for every fault. I don’t believe that this many people exist in the world who scan the internet, leaving inflammatory comments on even the most innocent of videos. People will get angry and disagree over anything on the internet, and the level they then sink to belittle and shock each other is unfounded in any other area of human communication or, even, life. If you spend 5 minutes in the comment section of almost any video on Youtube, you are likely to encounter at least one comment or reply that is so horrifically racist, homophobic, hateful or a combination of all of these things, that it genuinely shocks you. They are only a few examples of the specific type of hate to be had on these platforms, too. It comes in all sorts of forms, against virtually anyone who dares post on any of these platforms, never mind just Youtube.

The thing that got me thinking about the pros and cons of social media on Saturday, though, was far more innocent than all of these things. It was a woman in her mid-40s who has been fighting pancreatic cancer since 2020 posting on Twitter. She posted a series of tweets detailing the timeline of her diagnosis. In summary, she was diagnosed in early 2020, was in remission a year later after a successful Whipple procedure, then a few months ago was diagnosed as stage 4, the cancer not only coming back, but spreading out of control. Her prognosis is not good as far as I can tell, and it seems that she has been given about 12 months to live. This is where things get complex for me personally with social media.

I’ve chosen to follow this woman, firstly. I knew her prognosis from her previous tweets, but I did not realise that she was actually in remission at some point and that this was until quite recently. It is heartbreaking to read. I always tell people who say that they can’t imagine how they would cope in my situation that it is impossible to know unless it happens to you. I’m going to be one of those people and say that I can’t imagine how it must feel to be in this person’s shoes, but it has forced me to really think about it over the past few days. Unfortunately, her story can easily become my story, and I may have to face that grim reality. The story highlighted that I may have to face it sooner than I even realised. It sounds like her remission lasted at most a year, if not less. That is a scary thing to consider.

I’ve felt so good recently that I really have managed to mostly shrug off the cancer. C’est La Vie; it’s so easy to say when things are going your way. I’m developing a thick skin developing and I am used to attending the hospital appointments, speaking about the cancer and dealing with the uncomfortable aspects of chemotherapy. I’ve always been someone who takes steps to adapt to whatever environment I’m in, so I think I’ve taken fairly well to the cancer lifestyle so far. The reality sunk in fairly quickly and, if anything, I overreacted to it initially. That is useful for my mindset, though, as once I manage to drag myself back a bit, I recognise that there is actually more potential in the situation than I am giving credit. It’s a nice way round to do things I think, as opposed to being numb to the news upon first hearing it, then spending weeks slowly unwinding the reality and dealing with the emotional burden that would place on me. Besides, I’ve always dealt with things this way, so I’m bound to think it is a better strategy.

The downside of growing accustomed to the situation is that you can be knocked harder by things that mess with your perception of it. There have been many things making life feel normal again. I ran just under 30 miles last week, and the times are getting better. My last chemotherapy cycle had a tough first 4 days, but then it’s been fine. I’ve felt more energised than I have in a long time and I’ve been doing a lot. Walking the dogs, cooking, engaging in getting back to work and looking into any potential financial benefits that the government provide which may help someone in my situation. I feel motivated to do things, it’s refreshing. But that has meant that I’ve felt more ‘normal’ than ever.

Finding out that my platelets were low was the first kink in the armour. I don’t mind missing treatment for another week necessarily; it’s actually a good thing for me, really. More energy, more running, more feeling good. But it is still delaying the inevitable, and it makes me worried that if my platelets can be low in the cycle I consider the best one I’ve had so far, how can I be sure this isn’t now going to be a staple of my treatment? Every 2 weeks I fail the platelets test and have to be held back another week. My treatment drags out longer, I have to wait longer to get that all-important end of chemotherapy scan and I struggle for even longer to understand what the future holds for me. It’s bleak and frustrating, but there’s nothing to be done about it.

Reading these tweets, though, provided a blow that goes far beyond revealing a kink. It reminded me that there is an entirely different part of this journey, far beyond the chemotherapy stage. That journey is stacked with challenges, most of them completely out of my control. People go into remission, only to be brought back down to earth again by another, sometimes worse diagnosis. Whether it comes within 6 months, a year or 3 years later. Sometimes that diagnosis is so devastating that there isn’t anything else to be done. Even thinking about this is speculative in my situation as I haven’t even managed to get the operation yet; I haven’t even had it confirmed that I will get the operation yet. To get to that stage, I may have to enter a completely different treatment stage involving radiotherapy, nano-knife, or both. That is part of the reality which triggered in my mind as I considered her story.

What feels worst about the whole situation is how it strikes hope in me that I don’t end up in that position. It feels amoral given that the whole episode was triggered by someone sharing intricate details of their story. The fact that someone is dealing with that reality, and I am hoping that I never have to join them in it, is itself a bleak reflection of human psychology. Of course, it would be far more strange if I hoped to also be diagnosed as terminal as a form of atonement for feeling this way, especially when this is a person I do not know personally. The way that my mind immediately went to my own situation, though, makes me feel selfish, and like I am lacking the correct type of empathy in the situation. I hope the best for her and her family. She has mentioned having a young daughter and a husband. As I said earlier, it really is impossible for me to imagine what it must feel like, but I’ve spent a long time thinking about it since I read her words. I’m taken aback by her groundedness and humility, both traits which seem to come naturally to many of the people I have met who have been dealt a tough hand by cancer.

So, I feel both grateful and resentful of social media again. On one hand, it allows incredible people to share their stories and give others some perspective on life. This is a huge pro. I’ve met many people through the blog and Twitter, some of which have become good friends in real life too. But the cons are that the algorithm starts to know you, and starts to push things your way that it knows are more likely to gain your interest. For me, because most of what I share, like and engage with is about cancer, this is the key focus of my newsfeed. It provides a rich mix of both positive and negative perspectives on cancer, and some days I go on there and find plenty to smile about, whereas other days it can be a harbinger of the grim realities of cancer. That helps keep me grounded and humble too, though.

It reassures me that I am making the right decision by only signing up to Twitter with the blog, and shunning Facebook et al. The whole metaverse thing scares me anyway. I’m pretty sure Mark Zuckerberg is an alien sent to earth to examine our species and send the details back to whatever super-race he comes from, so they can learn how to better indoctrinate us. I’m suspicious of him and Elon Musk. For some reason, I’m less suspicious of Bill Gates. Maybe he just invests more in his PR budget, and I’m getting swept into the brand. He seems genuine in his want to contribute to the betterment of society; Mark Zuckerberg seems to want to contribute to the betterment of himself regardless of what effect it has on society. Every time I see an article stating that Facebook’s usership is dropping, I feel giddy and I chuckle to myself. Hopefully, Twitter will appreciate my dedication to them alone and give me a little blue tick, implying the blog is much bigger than it is. Maybe then I’ll be invited into the inner-circle of the elite and find out more about this super-race they’re working for. But maybe that would be on terms that I must never be cured of cancer to keep my role in the group relevant…hmm, is that a price worth paying? At least I’m not thinking about those Tweets anymore…

4 thoughts on “Ebb and Flow; A Critique of Social Media

  1. Julie says:

    Our paths would not have crossed without twitter so as much as there are many negatives, to myself and my family twitter has brought us you and your family. So we would say that’s one huge positive that can outway at least 100 negatives xx

    Liked by 1 person

  2. I am definitely convinced that both Zuckerberg and Musk are aliens; they don’t even hide it well– lol. Your post connects to much of what I’ve been writing about this year. I’m at about a year and a half into remission, and I’m still having trouble describing all the feelings that come with that. There is comfort and joy knowing I am okay in this moment, but also guilt for being one of the lucky ones, and worry not knowing if I will still be lucky at my next appointment. There’s sadness and fear in hearing about friends on social media who are dealing with recurrence and/or a bad prognosis, topped with more survivor guilt. My oncologist says recurrence is rare after five years, so I know many of us have our fingers crossed to make it to that “finish line” of sorts, though nothing is guaranteed and five years seems so very far away. The whole cancer experience is a mind game, especially for us who have our lives interrupted in our 20s and 30s.

    Like

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