December 27, 2012

Death by Facebook

Having cancer a couple of decades ago, I can only assume, must have been a private affair. Not so today. Cancer is everywhere; it has infiltrated our lives by touching many of our elderly, and increasingly, our young and fit. It now permeates our supermarkets, where items with pink packaging promise a better future, and our magazines, where celebrities have photo shoots under headlines that read ‘I’ll beat this in 6 weeks!’.

And increasingly, Facebook and the Internet are being used to communicate cancer and share the ways it changes our bodies and brains. The digital age allows cancer to leave the hospital and the confines of the beds in which we lay healing. The image of chemotherapeutics entering our veins is no longer the domain of the privileged few that choose to sit by our sides while we bathe in these medicines – anyone and everyone can update their status, pin a picture or write a blog entry and tell whomever is listening what cancer is like.

I’m of a generation that uses social media – that odd extension of human sociality that promises hyper-connectedness, but most likely only strengthens the connection between users, touch screens and keyboards. I used Facebook during cancer as a way to direct people to this blog, as this blog is more about my cancer, and less about me; it is where Ben with cancer lives.

Other people do it differently

Some people fully merge their e-self with their cancer self, and this is commonly done on Facebook.

Through Facebook I have been able to connect with people my age, who have the same cancer as me, and get what it’s like to be me. It is an invaluable tool for people thousands of kilometres apart to meet and discuss all that cancer is and is not. Part way into my cancer journey, some of these people I’d met started dying and it struck me that Facebook means I can be privy to it all, right up until the last breath.

I’ve witnessed different ways of dying on Facebook

Some people log off early in their final struggle. The posts and photos quietly dry up, just as their motivation, and the relative importance of Facebook to their lives, must.

But some people communicate until very close to the very end. Posts of pain and pain relief, damaged tissues, loss of appetite, people that have let them down and people that have surprised them, what matters most and what matters least – it’s all there for people to see, comment on and Like.

A family member or close friend eventually takes over the account and posts on the cancer patient’s behalf, and your heart sinks because the shift in ownership reflects the larger shift in life force. And then the page becomes about other people and their grief, and then sometimes things get complicated and distorted when loved ones want to close the account and meet resistance from the masses.

I’m confused by Facebook and dying

I'm most confused about how these two forces – one modern, the other ancient – are merging in this age of ours. It’s probably too early to tell anyway.

It is interesting though, especially when support services for young adults with cancer aren't as prevalent as they are for other groups with cancer. And those that are available for us make no mention of what it may be like to watch your friends, and cancer colleagues, die online.


  1. Another thoughtful and wise post Ben. I've thought a out this before when friends have passes on. Like never before we have a digital estate in addition to our physical one. And how we use and leave it someday still seems to be very uncharted territory. Thanks for getting my mind thinking this morning.

  2. Thought-provoking post, BB. Have you ever come across someone who has missed the 'coverage' this blog provides and was completely unaware of your diagnosis, treatment, recovery et al?

    Of late I've thought about how much information I accrue about someone online. Often I wonder what information our conversations are based and on and on what platform (plane of existence?). And some relationships function by way of watching the other person online. Weird.

  3. I also find my experiences in the eworld and real world become blurred. Was I there when X did Y or did I just see pictures on Facebook?

    I do encounter people that have no knowledge of what has happened to me, all the time. But these are usually people from my past that contact me out of the blue. If they have contacted me after doing a quick Google stalk they always know.

  4. Super interesting Ben. I've been lucky not to have to observe this yet. In some senses its seems a positive and powerful (as well as sad) development that such a real human step is chronicled along side all the other ones. Think of all the damn babies you have to see on Facebook after all. Maybe its the next step for Facebook's evolution to be the place where your better and worse coexists.

    It was also interesting how we both took different routes on how to manage other people's reactions to our cancer, right? You started this blog as a way to manage communications about your treatment. I suppose I chose to keep the whole thing offline as my way of managing communications about my treatment.

    1. Nice point.

      Just to clarify. I didn't really start this blog to communicate my treatment; I'm not that popular, nor do I have massive circles of extended friends that require a public blog to stay informed. I was just so damn curious about the science of cancer and aspects of cancer treatment for a late-20-something that I had to research and write about these topics and issues.

      My offline communication style has changed markedly since diagnosis. Several close members of my family have actually mentioned that they feel uninformed about my cancer - not the science and medical stuff, but the me and feelings side of it. But reading this blog you probably wouldn't think that possible right?

    2. I for one am glad you did. I think were all quite choosey about who we want to be vulnerable with, I just always found your openness (even if it was about scientific and social aspects of the process) quite brave.

  5. Another great post Ben!

    I agree with Crystal, I'm so glad you shared this blog. The times that I felt down were the times I came online to read about brave Ben. Brave Ben = braver Michelle!

    I don't think we should ever have to feel brave to be able to share, but unfortunately it all goes back to what we want people to think about us which is a disease in itself.

    At the end of the day Cancer taught me not to place too much importance on what others might think, and to place more emphasis on the sort of person that I want myself to be.

    Keep up the great work :)

  6. Your site has been very helpful with the material you provided. It certainly seems to be informative to help other readers get a lot out of the content.I am looking forward to more future postings. Thank you very much

    1. Thanks for the feedback, keep up your good work.