Cancer, internet and unexpected emotions

It’s been a rather odd past few days.  I am settling back into routine after my Chiang Mai adventure (and yes there are still more updates on that in the pipeline).  I am at that lovely place just after a fairly big check and therefore at my least anxious about my health.  However, I have been prompted to reflect (again) on how much our lives, and in particular our lives since cancer, are affected by the internet.

It is obvious that the internet and social networking can play a considerable role in the whole cancer experience.  It has played a huge part in my own experience, being fairly isolated and far from my roots and family. There is a wealth of information (and mis-information) available on the net ranging from Dr Google’s viral approach to providing information through to the focused and detailed information and discussions on Breast Cancer and other dedicated websites.  There is lively and passionate debate on issues connected with Breast Cancer, particularly around the Pink branding and lack of progress on cause, prevention and cure. This debate is clearly enriched through wider internet reach.  Naively I used to think I was an advocate for breast cancer until I began to engage with and follow the debates and discussions and now I realise that I am a junior when it comes to advocacy and understanding of the issues.  I also believe that in a sense, Cancer unites us, in providing a common enemy.  The internet enables us to garner that unity and use it constructively.  For me personally, social networking and this blog have played a massive role in my cancer experience and do so increasingly.

There’s nothing particularly new in any of that, so what has prompted my sudden standstill?  I’ll tell you what.  Relationships and emotional connection with people I have never met.  That is what has made me stop and think.  I have made “friends” with a number of people through the internet – particularly thanks to the blog and Facebook, and to a lesser extent Twitter.  Some of these friends I have come to know pretty well, even though we have never met either in person or spoken.  When one of my cyber friends was stolen by cancer last year, I found that it affected me enormously.  I did not even know her name, yet we had connected through our respective blogs and been quite close.  Her death was a great shock and I found that I was unprepared and ill equipped to handle it.

Last week I read the very powerful post by another blogging pal, the Carcinista,  where she shared and discussed her decision to stop treatment.  What an honest, emotional and inspirational post from an amazing woman.  The blogosphere, Facebookworld and twittersphere shared her post and we seemed to share a sense of admiration along with the deep sadness at the stage of her illness.  Yesterday, I came online to the news that she had died.  Another young, remarkable woman had been stolen by cancer from her family and friends.  It took me right back to the grief I had experienced last year, and from the prolific messages of condolence it was clear that I was far from alone.  Yet, again, this was someone I had never met, and in this instance we had hardly communicated directly.

It seems that the internet brings us a whole added dimension which I feel is outside my familiarity zone and for which I am not equipped.  That is the emotional attachment to online friends.  How can such strong emotions come from connections which are in one sense actually quite impersonal?  It really strikes me as powerful that I shed tears for someone yet I do not know their name.  I must stress that this is not in the way that a film or death of a famous person can prompt tears and grief, but a deep and real sense of personal loss.   I also wonder how it feels for the family and loved ones who receive outpourings and numerous messages of condolence from way outside the traditional sphere.

While I will never be glad that I was one of those who was dealt the cancer card, I am thankful that I was diagnosed at a time when the internet has brought this added facet to the experience.  And if I do not feel prepared to deal with the added emotional dimension, then I need to do something about that.  I reckon that acknowledgement and reflection of this is a good first step.  It might be a new and strange experience bringing unexpected emotions, but I am truly glad to embrace it.

I am really not sure if it is appropriate or not to dedicate a blog post.  In case it is,  I would like to dedicate this post to the special people I have connected with “thanks” to cancer and thanks to the internet, in particular those who have been taken by cancer.

38 thoughts on “Cancer, internet and unexpected emotions

  1. I’ve been following your blog off and since its beginning. I tend to be looking in and not contributing much; I also wonder how I would have coped with cancer before the internet age.
    Take care

    • Thanks S – and good to hear your thoughts. I can’t imagine how different and more difficult it would have been without internet. You take care too, hugs P

    • Thanks Katie – isn’t it such a new world – and so good to connect with you in through this new dimension. P

  2. What a perfectly written post which expresses perfectly how I feel as well. I have also posted about this same topic because like you, I too am a bit amazed at how deep these internet friendships and bonds become. Hearing about this latest loss made me incredibly sad. I am grateful for the connections we make online, even though pain and sadness too often also come with them.

    • I’ll check out your post – yes, it is a funny world which brings new benefits and challenges. It certainly enriches.

  3. What a wonderfully contemplative post. I’m with you, I’ve come to care about people I’ve only met online in ways that surprise me. And I’m affected by the loss of wonderful women like Sarah although I didn’t even know her online. I keep thinking of her family and of how we lost an amazing voice far too young.

    I’m also with you in that I’m fumbling with etiquette. I didn’t “like” Sarah’s page after she died so I could post condolences, since we didn’t have a relationship and I didn’t want to come off like some grief groupie. But I did post comments on pages of people I already know, and shared comments on mine. I also wondered if it’s okay to dedicate something to someone you don’t know, but went ahead and posted a poem on my blog that I dedicated to Sarah and two other women who died recently (one was a blogger I didn’t know and the other one I did know; she lived privately offline.)

    Such great food for thought. Thank you.

    • Exactly – it is so hard to know what is appropriate. The rules and ground are shifting and there is nothing to guide us except what we are used to. It is so good to have this discussion and know I am not alone. And what a beautiful dedication.

      Thanks so much

  4. Thank you for what you are describing. It is sometimes hard to capture, and put into words, these experiences and unexpected states of being. I, too, was hit hard by the Carcinista’s story, her decision, and the news of her death. It brought about grief, sadness, confusion, anxiety, and a sense of gratitude for our online community. But, I struggle to know how to process it all. You’re post is most helpful. Blessings.

  5. Thank you for this post. I completely understand your comment regarding the internet and online friends. I’m not exactly sure how I would be handling my own situation had it not been for a place online to seek out others like me, and to find information that wasn’t provided to me through my diagnosis/treatment.
    I shed many tears for Carcinista who, even though I didn’t know personally, had given me the feeling of solidarity in her writings. It is the same with all of you. Whether it is you, FeistyBlueGecko, or Nancy’s Point, Uneasy Pink, Cancer Culture Chronicles, Bringing Up Goliath, Chemobabe, The Cancer Assassin, and The Accidental Amazon(my apologies if I missed any), you all have given me a place to vent, to be heard, and to know I am not alone in my feelings.

    Do you all know just how powerful and how wonderful you all are? I’m telling you now because I didn’t get a chance to tell Carcinista that. I wish I had.

    • I too am very glad to have this space, and community and just because it is online does not mean it is not deep and meaningful. I just love your comment about this being powerful and wonderful – you are right, we must capture this and treasure it.

  6. YES, YES AND YES!!!! The internet has been a pure gift to me in terms of the connections I have made and the unending support through good times and bad. Suddenly the world seems a much smaller place doesn’t it, and it warms my soul. And I think it’s entirely appropriate to dedicate posts. I dedicated my post yesterday to The Carcinista. She was the Queen of Snark who taught me all I know. I miss her already.

    • So true thanks A – yes my soul is warmed too. I’m veyr touched to hear you have also dedicated your post to the Carcinista, it was such a privelege to have known her. P

  7. All this resonates powerfully with me too. Both the post check feeling and the power of online relationships. When the Storm Riders met in person for the first time it was as if we had known each other for years. I couldn’t stop crying the first time one of my online bc friends (not one of the SRs) died and each time it hits me hard.

    And you and I may have met in person many, many years ago, P, but we’d not have re-connected with online communities.

    E xx

      • So true E – and that reconnection is another dimension. Whoever would have dreamed that we would “meet” again thanks to the online world, and have shared such an experience! I’m so pleased that we did re-connect, xx

  8. I have got to know so many people online who have become friends, though we have and probably never will meet. It’s an astonishing thing that the internet lets us share fears, joys, hopes, fears, celebrations, sorrows, to get to know each other, and to feel love, for people who are on some level strangers. I think it’s wonderful – it can only be good for our sense of shared humanity. Even on those days when it also makes our hearts sad.

    • Yes, J – and I find that I have probably shared more private details, especially of breast cancer with online friends than people not online. Perhaps it is because we seek out and can find those who we have something particular in common with. I agree that it is wonderful and the fact that we can be saddened just confirms this enrichment.

  9. I sometimes wonder how my life would be without internet connections. They’ve become an incredibly important part of my life now… and yes it would be much more difficult without them. I too think it’s truly wonderful to have all these amazing friends to share good and bad times with.

    • Me too S, I think it would have been hard to cope without the internet bringing this extra support. The thought of having had this and no longer having our online community is a rather frightening one! Let’s hope the internet never breaks! Again, I totally agree how wonderful it is – I am very thankful that I live in these amazing times. P

    • Thanks S – great to see you here, I have been following your blog for a long time. Warm wishes, P

  10. I am so glad I found your blog through someone’s comment on Twitter. You so gracefully describe the power of human connections. The loneliness I felt after my diagnosis and treatment is hard to describe, although I have a loving and supporting family.
    What’s interesting to me is why the virtual connections can be stronger then personal. My 6 week support group has not maintained contact after it was over.
    I believe in the “sisterhood” of survivors, just like the brotherhood of the Marines. I can immediately relate to another women survivor, and if we meet in person am always compelled to give her a hug. Of course, I ask permission first:)

    • Great to connect with you too F. Yes, I am pondering the whole question of online friendships and support compared with “real life” connections. I think I will be taking this forward in a another post. Your experience with the support group is interesting – I wonder why that is too.
      Thanks and warm wishes, P

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  12. Very good post. Yes, I’ve been amazed at how deeply I’ve been touched by people I’ve never met, some of whom I have no idea what they look like or even their name. Too often, I’ve found myself sitting with my computer on my lap, crying over another loss of a virtual “friend”.

    • Thanks J – yes, it’s hard to imagine that this would be a facet of the world with internet, who would have thought it. Warm wishes P

  13. Philippa, I feel very much the same. I’m blown away by the closeness I feel to women I’ve never met solely based on our shared experiences. I love knowing I can write anything about this cancer journey and someone will write that they understand. We’re not alone and these “friendships” have come to mean the world to me and like you, when we lose one, it’s heartbreaking. Thanks for writing this so beautifully.

    • So so true, S – I agree, and like you, cherish those close friendships which have developed. Cancer sucks, blogging rocks and online friends take my breath away 🙂 Thanks and hugs P xx

  14. Oh, this is so true, P. I felt the same way this week. I would not be sane had I not found some generous, compassionate, funny women in a breast cancer forum shortly after my diagnosis. And the connections just continue to grow. We share so much here, and the cancer experience in particular is something that resonates for so many of us. I was personally gobsmacked by discovering that dear Sarah, the Carcinista, lived probably about an hour away from me — something I didn’t realize until she died.

    The best is when, as I did last weekend, I actually get to meet my cyber-sisters in person. I met several other bloggers at the NBCC Conference, and one of the things we all chuckled at was how wonderfully strange it was to be there together, in 3D! Were we all really holigraphs? Were we all just part of the Matrix?? No! We were real!! LOL

    Hugs to you.

    • Yes, K – so true – it has made such a difference to my experience and I cannot imagine how it would have been without this incredible support. We share so much, and interact through blogs as well as facebook and it all builds a very strong bond. I love your description of your get together at NBCC conference – how I wish we had the chance to have these face to face meet ups more easily. Big hugs P x

  15. You’ve eloquently expressed the feelings of so many concerning the close bonds of friendships in the virtual world. Regardless of whether we know one another’s real name, we identify with shared experiences, cheer one another on with each treatment and completed victory and cry when one of us breaks ranks. I was going to write a similar blog, but after having read your words, you have more than said what is in my heart.

    Thank you,

    • So good to hear that we are so much on the same wavelength with this B, yes such a strong connection. I would be keen to hear your thoughts too, I am sure I have not used up all the words 😉 – in fact I keep thinking of more I want to say on the topic! Warm hugs P

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