In trust we blog

When I first entered this strange new place known as “life after hearing the you have cancer words”, I realise that I had expectations of how life would be playing out from then on.  I vaguely expected that I would go through the treatment, share the emotional turmoil with family, friends and colleagues and then resume some kind of life as it had been “before”.  Needless to say, it hasn’t quite turned out like that.  The basics were there, but life changed beyond recognition.  And life has never been the same since, for better and for not so better.

There has been one dimension of the cancer experience which has been totally unexpected.  And that dimension is the rich, supportive environment I stumbled upon online, particularly through blogging.  I could never have imagined the number of people I have connected with, and particularly the depth of many of those friendships. Now, this is not something new to my posts.  I have previously (and often) discussed how emotionally involved I have become with friends I have connected with online. I have described how taken aback at the level of distress when one of our number is taken. The raw grief of loss, and the unexpected tears on learning that someone you have never “met” has been taken simply crashes through the boundaries we are accustomed to. I have previously, and more than once talked about how much that has surprised me.  I have been moved beyond any imaginable expectations when one of my online friends was dealing with the toughest of times.  So this is not a new topic in my mind, but I continue to be astounded at the warmth and genuine friendship which has developed with friends online and value this more than I can express in words.  Utterly heart-warming.

In the past few weeks, however, I have been nudged to revisit some of these thoughts. I was shocked when reading a post from Nancy where she shared her shock when she learned that another blogger had taken her posts and copied them almost word for word.  This made me reflect on how much we expose ourselves online and lay ourselves open emotionally.  Just because what we write is completely genuine, we take it that all other similar blogs are similarly true.  We generally accept what we read by fellow bloggers and bloggesses at face value in such areas as cancer blogging.  Yet the internet is an unpoliced medium and as far as I am aware, there are no checks to ensure that what is written is true if that is what is implied or stated.

And then, this week I was I was catching up on Chez’s blog when I was stopped in my tracks wen I read her post about “Annie”.  Chez and Anne had connected online, guest posted on each other’s blogs and after some time “Annie” abruptly broke contact.   Given her secondary diagnosis, Chez feared the worst and thanks to social media and perseverance was able to get in touch with one of her friends.  She was shocked beyond belief to discover that “Annie” had in fact fabricated her diagnosis and whole blog.

The point which I come back to again and again in this is the extent to which we trust.  Nancy trusted her readers yet one chose to lift her words, and use them as her own.  Chez trusted that “Annie” was being honest.  Yet we find that this virtual layer of our friendships has the potential to be deceptive.

Essentially, we are trusting strangers, unknown entities, and opening our hearts and minds.  We share our fears, our hopes and intricate details of what we go through in the cancer experience.  Some of this is highly personal, but the supportive environment and strength of friendship reassures us and we feel able to trust.  And then our world is rocked when something we trusted and believed turns out to be smoke and mirrors.  That reflection in the mirror is of the complicated and inter-connected online lives and relationships we develop.  And how much trust we place on the basis of the information in front of us, often because we share so much of our own personal self online.  Something like this knocks that trust.

However, this has to be put in balance with the depth and number of genuine friendships and individuals in our online community.  A good number of bloggers have posted accounts of real-life 3D meet-ups.  The variety of social media we use also means that we have a kind of triangulation which must make it more difficult, but in no way impossible, to be duplicitous.  Perhaps we have a sense of additional false security because we are after all living with our breast cancer diagnoses. But many of the signals that protect us in the “real” world are not there in the virtual world.  We are far more vulnerable and exposed than we realise, and perhaps the very depth of genuine friendship we find online further lulls us into that sense of security.

The whole issue of trust was one which was very much on my mind a few weeks ago when I was making plans to met Terri in “real life”, my first chance to meet another breast cancer bloggess.  I remember thinking that on the rational side, travelling to another city half a day away in another country, was somewhat risky.  Was I being naïve in trusting that Terri was who she said she was?  We had only known each other online.  We read on and commented on each other’s blogs, had connected on Facebook, had emailed a number of times and I felt a true connection and shared values.  But we had not actually spoken.  I remember thinking quite clearly that in terms of a methodically calculated risk analysis, this would have to be considered rash and high risk.

However, although these “rational” questions went through my mind as I booked time off work and tickets, I did not seriously for a moment believe that Terri would be anyone other than who I had met online.  I was sure she would be exactly who she said she was online.  And of course she was!

After reading Chez’s revelation, it did make me stop and reflect on how trusting I am about what I read and how I connect online.  I without doubt take what my blogging friends write at face value and would not think to doubt that some blogs could be invention.  And how should I apply that to my own blog?  Let’s be honest here – my own tales must seem rather far fetched and I do not readily share personal information to corroborate my experience.  I think I have only ever posted one photo of myself and my name appears only in comments.  How credible is my blog?  A Scottish woman, living and working in one of the most enigmatic countries in the world, diagnosed with breast cancer, treated in Thailand, experiencing so much in all corners of Asia……..  Is this for real? If I were reading this myself, would I believe it?  I am not sure that I would!  But here I am, on a sticky pre-monsoonal Saturday morning in Yangon tapping away my thoughts while the fan is whirring overhead, a cheeky mynah bird calling out in a tree in the garden and a street hawker calling out “brooms for sale” as he passes by our hedge, along our lane. Yep, I am real– (pinches self) though in my PJs but don’t tell 😉

I find that when it comes to online trust, it is similar to online loss.  These new dimensions to relationships and interactions do not have rules or protocols.  We do not have the signs and signals we are used to which enable us to process and evaluate online dynamics. And in many cases we find we are not equipped to deal with the depth of emotion we experience in something which may have been experienced entirely in the virtual world.  Witness the incredible #bcsm discussions as one demonstration of online support and emotional connection in its discussions and debates. It is a new and strange territory, and one in which we find a wealth of unexpected characteristics.

The online world may be a fertile environment for duplicity without consequence.  More than ever we need to be aware of that while developing friendships and connections in the blogosphere. In this complex issue of trust in this new and evolving space, on one hand I know I should be wise in developing friendships.  However, I would rather risk and trust than not.  Otherwise I could well miss out on the wonderful connections and friendships that have been brought to me purely thanks to the online world. And I can’t imagine  a world without you!

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All over the place

It has been an unforgettable week, for reasons which are painful and upsetting, as well as ones which are inspiring and affirming. And a week which has seen me all over the place.  In every sense – geographically, physically and emotionally.

The Breast Cancer community around the globe is still reeling from loss which made it a particularly poignant and meaningful time for a rendez vous which I, for  one, had been scheming for some time.

It was a crazy kind of idea really, to meet up with someone I knew very well but only from our online connection.  Someone who I was sure was a kindred spirit – Terri of A Fresh Chapter who is volunteering around the world.  It was all the more crazy because my schedule meant that I had not been able to connect with Terri when she was in Vietnam, nearer to my neck of the woods, and reachable by a direct flight. No, I would head from Yangon early in the morning, transiting Bangkok and travel to Hong Kong for our meet up.  Travel which would take the best part of a day, and would take me to a city over 1000 kilometres from Yangon, to a place which was home for neither of us.  And this arrangement was made totally on trust.  Absolutely, completely and utterly on trust.  If someone had told me 3 years ago, that I would travel to another country, at a fair distance, to meet up with someone I had in fact never met before, and who I knew only from their online profile, I would simply not have believed it. What would have happened if it was all an elaborate hoax (spot the paranoia!)?  What would have happened if she had not turned up?  On the face of it, this was an extremely risky undertaking.  Yet, I had complete conviction that Terri would be there, and that we would have heaps to talk about.

My journey was a bit rushed.  I had been very busy at work, had been all over the place emotionally with my father’s ill health, Rachel and Susan’s loss and the diagnosis of my friend.  I threw a few things in my small case, gathered my travel papers and cash card, and after a cup of tea on Thursday morning I caught a taxi to the airport.  I even packed an umbrella to keep the sun off me while walking.

The morning was hazy, leaving our part of town, and Inya Lake looked mysterious in the early light.  When we reached the “Eight mile” junction, just over a mile from the airport, the mist thickened and by the time we reached the airport there was a thick blanket of fog.  The taxi driver was highly bemused by this, and told me he had never seen anything like it.  He told me that this must be like England.  Little did he know that a Scot would of course find that most amusing!

Unsurprisingly, my flight was delayed by an hour as the fog slowly cleared and enabled the incoming flight to land.  This cut my connection time considerably in Bangkok, but a smart sprint took me back to the same gate as I had arrived, and entirely coincidentally back on the same plane now with a different number, captain and crew in time for departure to Hong Kong.

The early evening sky was heavy as we approached Hong Kong and I could just make out the skyline and several boats in the bay as we landed.  As the plane doors were opened and we disembarked I was somewhat alarmed to see the staff wearing heavy winter jackets and warm clothing.  A skim of the in flight magazine and my usual study of the flight paths and route information had already informed me that Hong Kong was considerably further north in the physical world than it had been in my mind.  These two facts combined to remind me of the importance of rather more pre departure research than I had actually carried out – I had been far too blase about this trip, and had assumed it would not be much cooler than Yangon.  I was evidently wrong and that renown Meterology expert, Professor Google was clearly having fun at my expense.

I had taken all of my bags as carry on because of the tight connection so was able to head quickly through immigration and customs, and onto the Airport Express train and towards my hotel, sweeping up a sim card, local currency and a few maps on my way through.  I had another episode of “oh dear, I should have done my research” when I put my card into the ATM machine (the poor card has been on holiday since I was last travelling out of the country) and realised I had absolutely no idea of the exchange rate and how much cash to withdraw!

My concern about the temperature continued to grow as I saw that people were generally wearing quilted jackets, fur-lined boots and thick scarves covering the lower half of their faces.  They were most definitely feeling the cold.  And in a light cotton blouse, open sandals and cotton trousers I was too.  My only concession had been to bring a pashmina shawl in case I felt cool in air conditioned buildings!  Perhaps I have learned my lesson now!

With the early delay and the time differences, the journey had taken most of the day and I had a quiet evening, emailing Terri to let her know that the first part of Operation Meet up had been successfully accomplished and that I was in the right place and very much looking forward to her arrival the next day.  I received a similarly squealy excited email in response advising me that the second part of the Operation was proceeding to plan and she was similarly anticipating our meet up.

I had a quiet morning on the Saturday, getting my bearings and fretting a bit about the weather.  One of the advantages though of life on the hoof, is that you tend to have friends scattered across the region and I had arranged to meet a friend who is based in Hong Kong.  This was wonderful from many angles.  Firstly it was just lovely to see her again and chat.  Secondly, it meant that my mind was distracted during the day, as Terri was due to arrive in the later afternoon.  And thirdly, and this was entirely fortuitous – my friend had generously looked out some sensible garments for me to keep me cosy.

All too soon lunchtime disappeared behind us, and the afternoon progressed.  It was time to head back to the hotel in time for Terri’s arrival!  I went back to my room, my stomach knotted with anticipation and immediately saw that there was a flashing light on the phone in my room.  I dialled the voicemail recall and there it was – my first “real life” connection with Terri with the sound of her voice.  Operation “Meet a Fellow Blogging Sister in Hong Kong” had been accomplished.

And we did have heaps to talk about.  We talked all through drinks and dinner, picking up again the following morning, and chatted about all sorts of life/career/cancer details as we wove our way around the many obstacles of “Dried Seafood Street”, climbed the many steps between lanes, explored the winding streets of Hong Kong’s central district and power-shopped for essentials in the shiny new mall.  It was wonderful to be able to follow through discussions, talk through ideas, share our experiences, hopes and fears.  Terri has met up with a number of blogging and Twitter connections so was perhaps less bug-eyed than I was at this wild idea of meeting up. It was so interesting to hear her talking of her other meetings and hear more about the people I have become close to without having seen them in “real life”.

All too soon, it was time for Terri to pick up her bag, and keep moving forwards on her Adventure of Hope as she had a flight to catch to Delhi on the Saturday evening.  I am in awe of her undertaking and believe that we are indeed kindred spirits, both of us having experienced some of the challenges for people with cancer in developing contexts.  Terri’s posts from Vietnam tell of the disparity in access to information, care and treatment and my heart stopped as she talks about  “over-crowded hospitals, diagnoses that happen way too late, and the unthinkable travesty of children suffering from metastatic cancer with no access to morphine “. We cannot fail to be spurred into action.  There is a huge job to do, and through Terri’s work I have also connected with the Global Focus on Cancer organisation.   After less than a day sharing ideas and thoughts I remain convinced we share a common mission.

So any underlying thoughts of this being a rather reckless jaunt did not materialise.  The weekend affirmed my place in the breast cancer community and my beliefs in the changes that I want to work towards.  And I very aim for it to be the first of many meet ups………

However, I think that the most incredible aspect to our meeting was in the timing, just days after Rachel and Susan were taken by breast cancer and we were all hurting so badly.  To be able to spend time with someone who was similarly touched, and who understood the depth of emotion involved in our friendships, would have been utterly inconceivable for me, usually so geographically distant from most of the community.   So although I have indeed been all over the place, physically and emotionally this week, my meet up with Terri was clearly meant to be.