The Meaning of Life and the Why of Blogging

 

There is something going on in the blogosphere. There is a shifting in the breeze and a sense of unsettledness. The groundswell of a movement is still there but amidst it s a sense of questioning. Questioning, why we blog, for what purpose and with what aim? We seem to be drowning in questions, and struggling to find many answers.  A bit like the meaning of life, perhaps.

In many senses the blogsphere is awash with breast cancer related blogs. (My own blogroll miserably fails to capture too many brilliant blogs). Of course the scale of breast cancer blogging reflects the enormity and diversity of the disease on top of our own individuality. The fact that there is such variety in the approaches we each take to blogging, reflects the uniqueness of our own diagnosis and experience and what breast cancer means to us individually.

I can see that I am not alone in feeling the need to spring clean the blog, peeking into the dusty corners of the archives and emerge with a shiny new, squeaky clean refreshed Feisty Blue Gecko space. I worked on the visual side a few weeks ago, and am quite pleased with the revamped look, although it might experience some tweakings and refinement.

That is the easy part though. The visual side is far less complex and much clearer than the “what’s in it” aspect. So following some heavy weeks at work, residual tiredness and gradual recovery from the recent ill health, it has taken some time in this post taking shape. Added to that is the continued feed of posts from fellow blogesses who are also thinking about the Why of Blogging.

It is interesting to see how our blogs develop and evolve as time marches forward. I remember the thinking processes I went through as this blog entered the blogosphere in October 2009, not long after diagnosis. Being so far away from family, many friends and support networks, I wanted to keep folks informed and updated as I was propelled along the diagnosis-treatment path. I also wanted to record the tiny details that I knew I would forget as time wore on. This would be a record of my experience that I could revisit. And connected with that was the interest to revisit when I would be in a different place emotionally and physically. I find it very powerful re-reading some of the posts from my earlier days following diagnosis. It is difficult to recall just how you felt long after the event. The level of detail I have written preserves that.


However, by far the biggest catalyst for my blogging about breast cancer was to try and get a grip on what was going on in my mind. I would lie awake at night, thinking, worrying and fearing. Starting to record everything and process it was incredibly cathartic, and still is. Having the blog to focus those thoughts and shape them into a post which would have to be coherent enough for others to read provided an outlet for the the scary thoughts, a kind of download button. Yes, blogging really helped to bring some meaning to life in the new cancer world that we are thrown into.

If my original Why of Blogging was multipurpose, then no wonder I am having difficulty making sense of the current Why of Blogging nearly three years on. And this is where I find myself far from alone.

Take Lauren’s blog,  After Five Years, for example. I would look forward to Sunday evenings and luxuriate in Lauren’s insightful and eloquent writing as I prepared for the new week ahead. On a Sunday even in Asia, I could time fairly accurately when the Tweet would arrive, which would tell me that Lauren had clicked publish on her latest post.  The end of last year brought a break in her weekly blogging, which I found quite unsettling and disconcerting. As the weeks turned into months, I would continue to click regularly on the link in the hope that there would be a new post. And then one day, there was. And her post was a discussion linked to the Why of Blogging and how this was shifting for Lauren.

Last month, within days of each other, Uneasy Pink and Bringing up Goliath published posts sharing very similar thoughts. Uneasy Pink expressed a tiredness. Tiredness of cancer, of the lack of real progress, and so tired of good people dying. And tiredness of trying to find some new to say when the nothing is really changing. Bringing Up Goliath shares a similar fatigue as she says she will be stepping back a bit to re-think.  She expresses a deep sense sadness, especially in seeing the progression of metastatic disease in women diagnosed at the same time as she was early in 2009.  Not long before I was diagnosed myself.

I feel as if I am in a kind of “cohort” amongst women who were diagnosed around the same time. A kind of “Class of 2009”. However, we are all in different places depending on our various diagnoses, stages, treatment paths and situations. I keenly feel injustice, guilt and uncomfortable relief simultaneously that so many are living with Stage 4 metastatic disease while I count my blessings daily that I am still in NED’s company. That very fact, that so many women are dying of metastatic breast cancer, despite advances and despite often early diagnosis and regular screening, is one of the drivers for many to advocate and shout for change through their blogs. There is a wealth of articulate, clearly argued and passionate debate in the breast cancer blogosphere which is a major Why of Blogging.

The Accidental Amazon is one such tireless advocate. She is the Queen of Snark and one very smart cookie. And she has told us that she is also feeling the fatigue and taking time to step back for a bit. She says:

“So, here’s the thing. I’m taking a break. No idea how long a break it will be. But I’m going to just live my life for a while — you know, that life I used to have before cancer. That life that has, in very large part, been on hold for four years”.

And that leads us to another kind of development in the blogosphere. Just a month ago, I was inspired to read news of another “blogging change of direction” from Second Base Dispatch.  She clearly articulates the complexity of finding her way, and the relationship between her new path and the breast cancer which probably put her back on the path and describes how she is now making her way forward:

“I’m going to have to devote time to poetry, likely at the expense of my breast cancer social media activity and blogging (unless I can figure out how to give up sleeping).

It might feel like you’re giving up if you don’t continue to fight for the friends you’ve lost, and we’ve all lost too many. But I also feel very strongly that if we don’t live the life that matters to us, we’re doing them an even bigger disservice. We owe it to them to make every minute count.

I don’t plan to walk away from breast cancer advocacy completely. The community I’ve found online means too much to me. I may not be blogging as often and instead of focusing on breast cancer, I may want to share what I’ve learned in case anyone wants to try their hand at writing as therapy.”

Being Sarah, for example, has been a launchpad for things broader than breast cancer, such as the wonderful sounding “Friday Walks which she and her partner have developed into a protected and precious Friday routine, and reports from Pot 44 which is a vital part of her life. This is amidst the grief she is reeling from, since losing Rachel earlier this year and most certainly does not mean she does not continue to shout when the need arises.  This is abundantly clear in her latest post. At the start of the year, she launched her new Shine like a Bee blog to share things creative, as well as gardening and updates from plot 44. Being Sarah, meanwhile, is focused on her breast cancer advocacy and experience, and matters related to her authorship. The Friday walks have now moved to A Sense of Place. She is also in a stage of thinking and organising how she keeps the content of the blogs discrete and focused. Questions, more questions.</

Time is a major factor too.  Blogging is a time-consuming lark.  It involves a great deal of thinking, writing and refining words carefully, selecting (and uploading which can take ages here) the right images, and then the tidying of links and tags and then often a great many deep breaths before the “publish” button can be hit.  This process can be sabotaged by breaks in connection and although I usually write most of my posts offline, there are times when I find myself on a roll, craft the best words and exactly the right tone only to have it all disappear in the ether when connection cuts.  I really should learn, and promise myself to every time it happens.  Until the next time……  Furthermore, I find myself pretty busy trying to fill my days with non cancery stuff and carpe the diem, so time can be pretty tight at weekends and evenings.  I have the latest Book Club book to read, writing exercises for the Writing Group, and Masterchef Australia to keep up with.  Not to mention the day job….  So the balance of trying to keep the blog alive and fresh, while living for the day is also tricky.

And that brings me neatly back round to my own personal Why of Blogging and how that fits with this recent overhaul of things gecko. I started blogging in April 2007, with the original Feisty Blue Gecko intended to note and document aspects of life and work in Asia. There were so many details, which would make me smile or surprise me and partly I did not want to forget them, but also I wanted to share these gems. When I was diagnosed in 2009, I created the current blog as I felt the clear need to create a different space dedicated to the breast cancer experience. However, I did not want to maintain the previous space. Nor do I want to return to it now.

I had no idea when I started blogging that I would become part of a community of bloggers and others online and become so emotionally involved and feel so supported and connected.  That is a very important Why of my Blogging.

All that brings me to the present day. As life moves forward, I know I will not return to the life I had back in Feisty Blue Gecko Days because my life is different now that it is lived through the breast cancer lens. It just is. So in terms of blogging, I might have posts which reflect or rant about on breast cancery stuff. I will also be updating and recording how things are going with health stuff generally, as well as the cancery stuff specifically. I am in fairly good health now, but I realise how fragile this is as I recover from the recent embolic escapade, and when I look at the cocktail of daily drugs I have to take. And there will undoubtedly be times when I feel I have nothing new or original to say.

However, I am in a fortunate position. I live in a fascinating environment at a very interesting time. I live in a culture in which I learn and observe new things constantly. There is a great deal to share as I experience and see new things.

Thus, the plan is to continue to blog in a similar vein, but perhaps to share more of the “life and work of a Scottish Woman in Asia” part of the new strapline. Who knows what will happen in my breast cancer future. It is impossible to predict. No matter what does happen to me, you can be assured that I will be blogging about it. When I see something that lights my touchpaper, you will be seeing a rant on here. When I go through checks and scans, or experience other steps in the path forwards, yes, that will be here too. I will aim to share the snippets and images of life and work here and the moments which make me stop and pinch myself in wonder that I am following the path that I am.

So in fact there may probably not be a great deal of change here. But then again, there just might be …..

 

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Doctorates in online gobsmackery

My fascination in the whole matter of internet and online social relationships continues to build and is a consistent theme which runs through my blog.  It was warming and affirming to see that my thoughts on trust really struck a chord too.  And I loved the quip from my online mentor (newly appointed 😉 ) and guru  Marie of Journeying Beyond Breast Cancer which suggested that a PhD in internet friendships and their complexity.  What a dream that would be to follow.  Can you imagine the amazing field research that would involve?  Reading all the blogs from my new-found friends and then arranging to meet as many as I could.  A study proposal is forming far too easily in my mind!

But all of that is fantasy.  Well for now it is…..  But I was keen to revisit briefly the them of trust and reflect on the many comments which came in.  What I found particularly interesting is that although the topic is potentially controversial (or so I had thought),  there was clear consensus around our online community.  That does not mean that it is not a complex and sensitive topic but this did reaffirm for me the very essence which was in my original discussion.  That of the strength and overwhelming sincerity in our community. The post and discussion brought out fairly consistent points.

  • We would rather trust and enjoy the many wonderful friendships and connections that we gain, albeit running the risk of being taken in, than miss out on a new friendship.
  • However, trusting is not easy and having been betrayed in a variety of ways, it can take time to allow ourselves to trust, especially where there are not the signs and corroborating back up which we are used to in our face to face or traditional interactions.
  • We are not equipped for the complexities and dimensions of social relationships which the internet brings.  But we are learning quickly and developing those skills!
  • Where trust is broken or we are deceived, there is a whole swathe of online support and back up to help us through.
  • We would far rather be the one who is at risk of being deceived than the one who deceives for whatever reason or motivation is behind their actions

This I am sure will continue to fascinate me and warm the cockles of my heart as time wears on and our community and interactions develop.

However, I wanted to highlight another gem which came out of the comments.  In the midst of our discussion about trust, there was a comment from my respected bloggess friend which included the word “gobsmacked”.  One of my favourite expressions.  A few comments further down one very wise and wonderful bloggess noted that she was hearing this word twice in one day and never encountered it before.  Now there are (dare I say rather boring?) definitions in the various online dictionaries for gobsmacked, such as:

Gobsmacked: adjective (British informal)

Definition:  utterly astonished; astounded: 1980s: from gob + smack, with reference to being shocked by a blow to the mouth, or to clapping a hand to one’s mouth in astonishment

I prefer this World Wide Words definition:

Gobsmacked combines the northern English and Scottish slang term gob, mouth, with the verb smack. It suggests the speaker is utterly astonished or astounded. It’s much stronger than just being surprised; it’s used for something that leaves you speechless, or otherwise stops you dead in your tracks. It suggests that something is as surprising as being suddenly hit in the face.

The gecko definition which came to being in my response is consistent with the detail on the above reference.

I know it is used a lot in the UK (especially in the north east of England and in Scotland particularly) and is a colloquialism for being totally astounded or shocked, kind of stunned into silence. The beautifully eloquent term “gob” is a crass word for “mouth” – “shut yer gob” is a particularly delightful expression to request someone to be quiet! I think that “gobsmacked” conveys the sense of being so taken aback and shocked at something that it feels like a physical blow.

Interesting enough, I clearly remember a message from a friend on hearing my diagnosis, which, thanks to technology (deep bow), I could call up.  He said:

….I’m gobsmacked about what you’re going through. I can’t believe it. But Scottish lasses are more than resilient, so I know you’ll sort this out nae bother. What are the next steps?

To which I replied:

sorry to smack your gob!! i know – it was totally unexpected, but i am in the best of places. Looks like we will be in Bangkok for a wee while for treatment, but early pathology is fairly optimistic…

So indeed there is a documented relationship between gobsmacking and cancer!  And my interpretation of gobsmacked as a bonus!
However, on top of my love of language and expression there is something which I love even more.  And that is prompted by my commenter referring to her lack of familiarity with “gobsmacked” by saying  “shows how little I know”.  Now she is one of the wisest and most eloquent bloggesses  I have been fortunate to connect with.  And she is enormously unassuming in the most humbling way. No, this is not about how little we know, but rather, how much there is still to learn no matter who we re or where we are in our lives and in the world.  And that was in the remainder of my comment reply.
Working in the field that I do, I have a kind of “mantra” which I try to live by as well as relentlessly reminding those around me – “you learn something new every day”. I love the fact that today’s learning is about “gobsmacked”!
We do learn something new every day, as long as we are open to it.  And we never know who our “teacher” might be – I often learn things from my 6 year old neighbour.  I am especially delighted to be part of a discussion in which an octogenarian embraces something new and looks for ways to adopt this.  How refreshing and humbling.
I continue to be gobsmacked at the great deal ofnew learning, as well as heartwarming and inspiring activity continually within this online circle, and a great deal of learning.  Now I think I will head off to look into doctorate opportunities at the University of the InterWeb 😉

Happy Blogaversary dear gecko

It’s a Happy Landmark Day today and what’s more, I’m in some great company as at least two blogging friends (Bringing up Goliath and In the land of new normal) have been marking “blogaversaries” in the past few days!

Two years ago, after weeks of lying awake at night, dark thoughts and questions swirling around in my head, I took the step of starting this blog.  It was important to keep people updated with what was happening, but the key thing for me was to process what was happening to me and the blog was a critical outlet.  Like many of my blogging friends, I have now found that this is an important part of my life, particularly in relation to my breast cancer experience.  I have gained an incredible amount through this blog, especially some close and special friendships.

I realise that in the past months, there are a number of characters and expressions which I have adopted and coined which have become almost like characters in the blog.  They have become part of my life since The Day That Everything Changed.   So I thought that a nice way of marking my blogaversary would be to put together a kind of cast list come glossary to fill out the details. I realise that I refer glibly to good old Twang Arm and back to the Groundhog Days.  So this will be a kind of Gecko Glossary.  And if we are honest, it is actually as much to remind and entertain me too!!  Looking back it is interesting to see what has taken on a firm place in my life and what has faded into oblivion and insignificance.

Throughout my blog, and in line with the approach I took with the original Feisty Blue Gecko blog, I use initials for family and friends in order to protect privacy.  This includes my Doctors, and I have to start with them as they are the heroes who have guided me through this.

Doctor Y

I started on this path with a consultation with my Dr in Yangon, Dr Y, who referred me to Bangkok and has tirelessly looked after me since then.  Through some very dark days and unpleasant procedures it has to be said.  She told me once that I never walk into the surgery with something trivial (I have walked into her surgery with pneumonia, shingles – oh, and cancer!)  I am threatening to come in with a severe dose of hypochondria!

Dr W

On arrival in Bangkok, I met Dr W and later his colleague Dr S, my wonderful surgeons, great experts in the field of breast cancer.  Dr W consults on Tuesdays and Thursdays but when he received the referral stating that I was arriving in Bangkok on the Friday evening, he arranged to come in that evening to review the results of the mammogram and ultrasound.  He was the one who showed me the spaceship and changed my life with his gentle but irrevocable words, “this is highly suspicious of cancer”.  He offered to operate the next morning along with Dr S.  They both looked after me during those first weeks and I bear the marks of their expert craftsmanship.  I still see Dr W every three months and I think we are both surprised how far I have come since that first day.

Dr W2

Once I received the pathology results from Dr W, he introduced me to Dr W2, my oncologist.  Dr W2 bounced into the consulting room with one of the grandest and loudest entrances I had ever experienced.  He continues to display his personality which is far greater than his stature, with his honest and direct approach.  He has led me through my treatment plan and also continues to monitor how I am doing with his wit and warmth an integral part to his consultations.

The Oncology Angels

I first met the oncology nurses of Floor 5 when I was wheeled along for Chemo 1.  From that day forward I have been cared for and treated with the highest level imaginable of professional and warmth.  These angels were able to take blood from my veins when I was dithering with fear, wired me and my port up and administered the whole chemo and more recently cleaning procedures, in the most comfortable way possible.  I hero worship these women, they were at the cutting edge of the treatment and I have been a very nervous patient.

The Spaceship

I will never forget the strange shape which Dr W showed me on his large screen.  It looked like a spaceship.  It was a cigar shape, and from the main body there were four strange shapes growing outwards, each one a bit like a cloud shape on a thick stalk.  The fact it was irregular and growing in different directions was a very strong indicator that this was malignant.  The spaceship was ceremoniously removed and analysed but not before it had made a takeover bid and lodged in 6 of my lymph nodes.  The Spaceship has gone, but I am living with its results every day.

Twang Arm

Twang Arm was an unexpected arrival.  I had expected great discomfort from the after effects of the mastectomy.  I had not expected to experience numbness, pain and a limit on movement in my left arm as a result of the lymph node removal.  I had not expected to have a set of tightly pulled guitar strings running from under my arm to my finger tips.  I had not expected a strange interconnected set of pains, numbness and sensations in places far away from my arm (my cheek and ankle for example) as a result of nerve damage.    However, that is what I got.  Twang Arm took up residence from the day of my surgery and has been an unwelcome guest since then.  We have entered a long term engagement.  I would stress that this is an engagement between adversaries in conflict rather than preparation for a long and happy marriage!  Despite regular exercises and my swimming obsession Twang Arm is still making its presence felt.  However, if I look back I have to see that its place in my life is less significant and certainly less painful and uncomfortable.  I have a much better range of motion, I have much more strength and the strange numbness is only in an area very local to the surgery site instead of being in satellite locations all around my body.   Twang Arm almost has the last laugh though – it is exempt from blood tests, injections and even blood pressure testing while poor old other arm has to take all the bashing and pricking in its place.

The Groundhog days

Early on after my first cycles of chemotherapy, I realised that the first days after each cycle were Groundhog days, just like the film.  I would wake up in the morning, for a second would be in ignorant bliss.  Then the side effects would catch up on me and I would realise that I had yet another day in front of me, which would be just like the previous days.  I found that I had around 5 Groundhog Days after each chemo cycle.  When I asked for a cup of tea family recognised this as the signal which showed I was starting to see through the groundhog fog and see a bit more clearly.

The Triathlon from Hell

While I was undergoing chemo, I read a description of cancer treatment as a Triathlon From Hell.  Wow did that strike a chord!.   It was indeed a triathlon and it was in many ways an experience from hell.  The first event was surgery, and it was followed by the chemo event.  Graduation from chemo led to the third radiation event.  It pushed me to the limits of endurance.  But I got through the Triathlon, I was able to move through each event and now it is well behind me. I do not rest on any laurels however, I have no idea if I will have to go through another series in the event of the cancer beast making a come-back.  I am also too keenly aware that for many the triathlon is a way of life.

Rocky and Rocky 2

If the three phases of treatment were a triathlon, then I felt that 8 cycles of chemo over 6 months represented a Boxing Match!  This was a Boxing Match with 2 massively unequal opponents.

Dr Evil

One of the most difficult days I faced, and one which I found disproportionately upsetting, was the day I met Dr Evil.  I met him in the mirror.  Three weeks after the first chemo my hair was falling out in handfuls, and I could no longer put off the inevitable.  I went to the hairdresser and any notions that I would look kind of cute, like Sigourney Weaver were blasted into oblivion by the appearance of Dr Evil (from the Austi Powers films) in the mirror.  I never quite got used to seeing him and never ever welcomed him.

Grizzly

I had a hilarious time (well with hindsight it is amusing, it was not so funny at the time) trying to get a wig in Bangkok.  Options were very limited, most were for Asian colouring and made me look like a Goth, and wigs are feel like a bit carpet on your head.  My wig was quickly christened Grizzy because I felt like a scruffy bear in my wig.  I ended up hardly wearing the rug and was much happier with scarves!

Pinnochio Legs

One of the side effects of Taxotere was a kind of leaden leg effect.  My legs were unbelievably heavy and very weak.  They felt wooden and as the cycles progressed they became quite unbiddable and awkward.  It took a few weeks for them to get some semblance of biddability back.

Barbie toes

One of the delights of Tamoxifen is the sudden onset of excruciating cramps.  These come on unpredictably and force my feet and legs into very strange distorted shapes.  My toes head in different directions and look as if they are on artificial tippie-toes, just like Barbie dolls.  Ouch!

Captain Paranoia

I am not quite sure when Captain Paranoia made his first appearance.  Rather he kind of sneakily moved into my life, and before I knew it he had taken up residence.  He is not exclusive to me though, I know he causes his mischief all over the place, convincing us that we have the most worrying signs of recurrence.  He tends particularly to enjoy the period before checks and works in partnership with Dr Google.

Dr Google

No matter how hard I try, I am too often tempted to consult Dr Google.  The problem is that he is too easily available and loves to respond to questions like “I have a funny mark on my heel, is it cancer?” with “ooh more than likely it is heel cancer”, and he produces pictures for added hysteria.  We know that we should not consult him, we know that he is unregulated and unethical, but we are still tempted.  Interestingly, the more Captain Paranoia leaves me alone, the less likely I am to be tempted to approach Dr Google.

Chemo treats

Just before my first chemo, my friend J suggested that I get myself a treat after each cycle.  That was a brilliant suggestion, and one which I took away and developed further.  The chemo treat system became an integral component of the chemo cycle.  Planning my treat was something which occupied my mind before and immediately after each chemo.  I found that I developed an unwritten set of “guidelines” for the treats.  It had to be something which I would keep, and not a perishable like chocolate or a sweet.  It was usually something which I could use frequently, and something which would motivate me to do things which I would bth enjoy and which were good for me.  Chemo treats included a new swim suit, art materials and the famous I pod library disaster!  Interestingly I still love my swim suit (chemo treat 4) yet the Jamie Cullum jazz (chemo treat 6) I still cannot listen to as it transports me right back to the chemo days!

So it has been quite a busy couple of years with all this going on!

Throughout this blogging experience, I continue to be humbled and truly touched by the number of warm friendships I have developed, by the amount I have learned and by the level of feisty debate.  I will never ever be thankful for cancer for picking me, but I have many other side benefits which I truly value.

Cancer truly sucks.  But Blogging ROCKS!!

Happy Birthday Blog!


Off on a tandem!

You can see from my blogroll on the right that I follow a large number of blogs, most of them Breast Cancer related.  Keeping up to date with the diverse and rich postings might take time but never fails to move me. I am humbled and inspired, I laugh and cry, I am inspired and challenged.  Through this I have “met” some phenomenal women (and a few men too, of course, but this domain is very much dominated by women).  Everyone has a powerful story to tell and there is an incredible level of spirit, intellect, snark, feist and debate.

When I first started this blog, it was an outlet to help me process the extreme stuff I was being faced with, and focused mainly on the immediate.  While I was in the thick of treatment in the months following diagnosis it formed a detailed account of diagnosis and treatment in my rather unusual setting.  Blogging was a lifeline.

Over a year later and in a different space, when I step back and look at it, I find that the blog has a different character too.  Now I find there are still some updates, but my ramblings are more reflective and often trying to make sense of life lived through the Breast Cancer lens.  I find that many of my thoughts are inspired by the rich material there is in each other’s blog posts. I love the variety in our posts, in our approaches and styles, reflecting how different we all are and our experience is.  I have special “thinking time” when I let my mind develop some of the thoughts which are stirred.  I love to let my thoughts develop during my daily swim, though it is a bit difficult then to note down any nuggets which I really want to remember, so I find myself repeating and mentally refining these ideas as I plough up and down the pool, mixing ideas with the number of lengths swum.  I also love that time after I put my book down at night and switch off the bedside light before I fall asleep for thinking creatively.  That is also a challenge in terms of somehow recording these ideas as they often disappear into a dream world rather too quickly!

So recently, when I read about Terri’s Big Dream, my mind started firing with a barrage of random ideas and thoughts.  Terri dreams, (which I believe means plans and will find a way of doing) of establishing a non-profit to help other cancer survivors volunteer internationally.  A vey exciting project, and one which we will connect about to chat and perhaps brainstorm a bit.

My mind however, went careering off on its own “tandem” ( as I love to say 😉 ) It made me think of the very different experiences which women have, depending on where they happen to be.  There can be quite a variation within countries, even where there are policies and guidelines such as the NICE guidelines in the UK. Living in Asia has given me an acute kind of better sweet cancer experience.  I personally have had an incredibly sophisticated treatment and care plan, with state of the art medical facilities and practice, the latest medication and no waiting time for surgery and results.

Very many are not nearly so fortunate though.  Facilities, diagnostics, pathology can be limited and medical specialists not easily accessible.  The costs of care can be completely out of the reach of many.  There but for the grace of God, go I indeed.

There is another aspect though which I find fascinating given the level of sophistication to the debate and dialogue regarding Breast Cancer demonstrating that many women are empowered and informed with regard to their treatment and care.  I regularly stand in awe of many of my co-canceristas when I read complex analytical discussions, thought provoking and carefully researched posts, powerful personal accounts and challenging articles.  There is a very strong Breast Cancer lobby driven by articulate, intelligent and dedicated people, passionate about the plethora of issues.  There is a strong challenge to the pink marketing and lack of progress in research and debate.  There is a drive to move beyond awareness raising and address the lack of research, particularly into metastatic cancer.  This is critical, there is no question of it.  Too many are affected by metastatic disease.  Cancer is still stealing so many.

However, I would like to just stick my neck out a little, and share my thoughts about awareness raising from a different perspective.

After I was diagnosed, I returned to Yangon and buckled down for the long ride of treatment.  I was blown away by the amount of support and help from friends and colleagues here. Then one day I received a phone call from a colleague.  She was very upset about my diagnosis and wanted to send her love and prayers.  It was incredibly touching, and bear in mind I had only been in this new job (and country) just over three months.  Then she told me that everyone was really surprised that I had been diagnosed with breast cancer.  Apparently, it is believed to be a “spinster” disease which only (or usually) affects women who have never married or had children here.  I was totally taken aback and responded quite strongly.  Many traditional beliefs have their origins in in a remote truth and I can kind of see where that might have roots, after all apparently having children at a younger age and breast feed your babies are seen to be factors which relate to reduced likelihood of developing breast cancer.  But I was shocked that the belief was so strong and I immediately vowed to raise awareness as widely and appropriately as I could do in my local setting.

To me this is a reminder that there is and clear and pressing need for awareness raising in a number of contexts, and this is not limited to the example I have shared here.

Nor does this mean that the question of research and particularly understanding and treating metastasis should come later.  It is not an “either/or” question.  There is no doubt that there is an urgent need to shift emphasis in the more advanced contexts, while seeking contextually appropriate ways of raising awareness where this is clearly needed.  My aim here is to convey the message that there is enormous diversity in levels of awareness and debate and I for one need to be reminded of that and the role I can play in it.

I am intrigued to hear how Terri’s big dream develops and while I know that the direction that my mind took does not reflect how the dream will come to life, it just shows how much we inspire each other in every sense.

 

Auld claithes (old clothes), porridge and blogging – a relation of “new normal”?

I was back in Bangkok on Tuesday morning, on the homeward leg of my long leave, and waiting to see my endocrinologist, Dr A after four weeks on the road.  The metaphorical road that is, as well as the physical one.  My leave had seen me trail from Yangon, to Bangkok, to all corners of the UK – London, Bristol, West Lothian, Oban/Lismore, London, back via Bangkok to Siem Reap and back to Bangkok.  I had travelled on aeroplanes, buses, boats, trains, cars, ferries, underground trains and tuk tuks.

After my stop off in Bangkok to see Dr A and attempt to pack all of the bits and pieces I had accumulated over the course of the journey, I would return to home in Yangon.  Back to  “auld claithes and porridge”.  This is an expression from old Scots and it translates directly, as old clothes and porridge.  It essentially means that holidays are over and it’s time to get back to work.  After my gadding about the world, it certainly fits!

One of the tasks I had successfully accomplished on my travels was to replace my elderly and now sadly incapable laptop with a newer, young and highly attractive model from which I have since been inseparable.  Along with good internet connections.  So on Tuesday morning, I was sitting in the hospital waiting area, with my sleek notebook, rather excited as I knew that it was the set time for the weekly Twitter discussion “#bcsm” (which I think stands for Breast Cancer Social Media – but perhaps not, I am happy to be corrected) .  This discussion takes place over one hour on Mondays at 9 pm EST (US time zone).  Because of the time difference I have not yet managed to connect with the discussion but often saw the wrap up points.  I was delighted that I should be able to join the discussion for a good part of the hour while waiting for my appointment.  It took me a bit of time to work out the technicals to enable me to join the broader discussion, and remain able to post, but once able to do that I found myself joining in with a big smile across my face.  It was so good to be involved in this live and lively discussion.

This week the topic for discussion was on “”Is there a new normal after treatment is over?”  There are a number of questions in here, including recognition of the often unexpected strangeness of the period after the acute and heavy cancer treatment has finished, when everyone expects you to be “back to normal” and “all clear” from cancer.  Within the questions of whether there is such a thing as a “new normal” there is the squirming “can of worms” over how to label such a “new normal”.  There are as many takes on these points as there are feisty Bloggesses and Tweeters, each view as valid as the next and it was, indeed a lively and spirited discussion.

I have been unable to come up with a term which I feel comfortable with for the “new normal”.  Additionally, my own take on this is that it misses the very thing which we fear and which plays a large part in defining this strange time. Recurrence and metastasis.  There, I have said it out loud.  Living with and managing this fear is something we have to learn to do.  Of course that is part of a “new normal”.  This is fine so far, but the bit I have difficulty with is that for those who have recurrence and/or mets, or who have been Stage 4 from diagnosis, we are not talking about a period “post treatment”.  Treatment is a part of life.  although I am not in that situation myself, it doesn’t feel quite right.  So for me, the debate continues while a variety of vocabulary and language is shared.

But that is just my take on it.  I know that there are as many views on this as there are women diagnosed with breast cancer.  And no one is wrong, we are just different and feel differently.  As with everything else, it comes down to respect of each other’s view points.

I find that I tend to see everything now through a different lens – the breast cancer lens, and this influences and affects planning and thinking in pretty much everything I do.  Up to now the nearest I have come to finding something to describe this time, perhaps influenced by working in the NGO world, is an acronym!  It is simply LPD – Life Post Diagnosis.  The defining moment for me was diagnosis, and nothing can turn the clock back nor revert to that time before hearing those words.

As I return home, and prepare to return to the routine of life, work, blogging I cannot help but ponder on the differences and similarities between the “auld claithes and porridge” and the ongoing LPD.

The underlying sentiment of “auld claithes and porridge” is that it represents a return to “normality” after a time of holiday, leisure, pleasure and perhaps even decadence. Well that certainly applies to my period of leave and there is plenty of photographic evidence to illustrate the point on the sister blog!  It often implies an upcoming period of frugality to compensate for overspending too!  Pretty much the opposite is true for that post treatment life.  After the mental, emotional and physical ordeal, we yearn for the chance to get back to normal.  And that is when it hits us that Life will never be the same again, that as we move forward, we tread rather differently and what we once considered “normal” is simply no longer there.  We have to find our space and our place.

Unsurprisingly there were many points of view expressed during the  Twitter discussion.  Happily the #bcsm session wrapped up just as I was called for my appointment to see Dr A. My consultation was fairly brief – bloodwork good, thyroid stabilised with the meds, sugar stable and not yet in the diabetic range, and cholesterol excellent (surprising given the number of eggs I have eaten in the last month.  One of the hazards of travel and breakfasting in different places).  Dr A was very happy with my progress, and signed me off for 6 months!  Now that does really help me feel as if I am moving forward.

I have returned to Yangon feeling refreshed and revitalised.  I have enjoyed special time with people close to me, have explored and adventured, finding most of all a confidence and strength I feared I had lost.  Now it is time to pick up the reins of regular life, Life  Post, and indeed Beyond, Diagnosis.  A critical element of of my LPD is without doubt the online engagement I depend on, so perhaps my version would have to be “auld claithes and blogging!”

Emotions stirred and thoughts provoked

Since writing about the unexpectedness and rawness of emotions sparked through friendships I have developed purely online, my mind has continued to ponder and I have found myself exploring this further at times at all sorts of times of day and night.  The reactions and varied comments, and even the flurry of twitter activity clearly told me that I am far, far from alone in this, and I guess that is at the heart of the matter.

There are a number of themes to emerge from the subsequent comments, discussions and blog postings and a couple of these have particularly taken my attention.  One theme to emerge is a comparison of the nature of online and “real life” friendships, or what I have seen termed “3D friendships” and the fact that they can feel in some ways as if they are more profound.

I also find the question of “overlap” fascinating.  This is where firm online friends meet in real life, or 3D.  The Accidental Amazon described meeting with 5 other feisty Breast Cancer Blogging Advocates at the recent  National Breast Cancer Coalition the US.  These women knew each other online, particularly through their blogs and it must have been a truly special if somewhat unreal experience to meet in person, as AA recounted in her comment on my unexpected emotions post.  On a similar vein, it was warming to read M of Journeying Beyond Breast Cancer as she blogged about meeting up with an online friend recently and talked about how different that face to face meeting was in comparison with her expectations.   I would love to meet my online cyber sisters and friends and wonder how we would get along if we did have the chance to connect in the real world.

The theme which has caused me the most reflection is that of why we become firm “stranger-friends”, sharing personal details about our illness and feelings, without knowing or even protecting our names and other identifying information.

When I reflect back over this whole cancer experience, I recall discussing my blog with family members, anxious to protect their privacy as well as using the blog as a way to update detail in a way which they could choose the level of detail they wanted to know.  I had realised that when I was sharing updates and news I would focus on the practical aspects of the diagnosis, treatment plans, side effects and of course, matters such as hair loss!  And let’s be honest there was plenty of that to talk about.   However, we never ventured far into the topics at the root of those scary, dark thoughts and fears which would keep me awake at night – being confronted with my mortality, my fears and my sense of vulnerability.  It is no secret that I started blogging mainly as an outlet for offloading those thoughts.  Rather than allowing them to feed on each other and grow, taking over my mind, I started to compose these thoughts into prose and the early thoughts even took a poetic form.   These enabled me to take control over thoughts, crafting them into something I could be proud of, rather than something to feed my fears.  Many of the words on this blog were formed during the hours when souls usually sleep and troubled minds make trouble.

How does this relate to our online relationships?  I find that the level of detail that I put on the blog is greater than I would or could discuss in person.  Without a stage to myself that is!  Let’s face it, if I were to recite or share a fraction of what I post here, it would resemble some long winded monologue!  In a regular conversation we tend not to talk in that level of detail.  A conversation usually does not allow the free rein that a blog posting does.  When you add the deeply personal writings which we put online with our interaction, a link is made, often a feeling of close friendship, generally reciprocal and one which can develop quickly into a deep emotional connection.  The fact that the words we share are not bound by the diversions of face to face discussions means that our thoughts and ideas can develop and be expressed in a continuous train of thought, without diversions, interruptions or the subtle body language signals that guide a spoken conversation.  There are no raised eyebrows, or sharp intakes of breath to tell us while we are posting that we should move onto another topic, or give the current one a rest.  Being able to process and express these ideas is enormously healthy and helpful.  The fact that our site stats tell us that someone is interested enough to read our thoughts, updates and rants often in great detail gives us the signal to follow through our train of thought.  We lay our hearts and minds out for all to read in the public domain.

The beauty of this is that it is so often reciprocal.  I greedily read the deeply, personal thoughts and accounts of so many blogs, often initially because our path is similar and then because we develop a bond of friendship.  By laying open our hearts and by reading and engaging with each other through comments, Facebook, twitter and sometimes personal messages, we quickly reach a level of intimacy and familiarity, deepened by a shared experience and in a context frequently of feelings of vulnerability.  I believe that this combination enables such a strong emotional connection,

When I look back at the thought process that I have followed even in this post, I can see that the act of articulating these ideas has enabled me to arrive at my own slightly clearer understanding of this unexpected phenomenon of the depth and powerful emotions of online friendships.  It has helped me to understand part of the question “why?” these friendships spark such deep emotions.  It does not even begin to explore the question “how” to handle these feelings.  However, that process of rationalising and attempting to understand and acknowledging in itself will prepare us and thus help to equip us to handle these emotions.

Even more powerful is the fact that so many of us feel similarly and this reassures us that we are not alone in far more ways than one.

Cancer sucks – but blogging rocks!!

The past couple of weeks has been really exciting for the blog.  This Feisty Blue Gecko seems to be getting about a bit!

I remain enchanted with my map tools which take me around the world and show that FBG has been to 76 countries since I installed them, the most recent new countries being Cambodia, Bahrain, Venezuela and Romania.  Interestingly, I have been to NONE of these countries myself!

I increasingly talk about how important it has been to connect with friends in the blogging community and how much I value the insights of our shared experiences of the Cancer Beast.  This has recently led to FBG slithering into other blogs as a scaly guest.  Thanks, J for sharing my thoughts on the Cancerversary on her blog, noboobsaboutit and M for featuring some of my words on the Poetry Friday spot in her blog Journeying Beyond Breast Cancer.

These latter lines describe the horrible night time worry time, post diagnosis and I know that it is something almost all of us experience.  That’s what cancer does to the mind.  It gloriously messes with it and invades waking and sleeping thought.  It has a particular strength in the night time hours.  These dark thoughts, however, proved to be the catalyst for the birth of the blog.  So I thought I would share the details of how this Feisty Gecko diversion was hatched.

From the time I found the lump last year, I would waken in the middle of the night.  Every night.  On first waking, everything would feel normal, but then the realisation that I might (and then of course, later that I did) have cancer would hit me like a metaphorical truck.  In the middle of the night, it is difficult to shake off fears and dark thoughts and things feel far more scary than they do in the light of day. And of course, you feel helpless to do anything in the middle of the night.  I would lie awake, tossing around the fears in my mind and trying to return to sleep, but in vain.  This continued after diagnosis and surgery and I started trying various tricks to divert my mind.  Music worked a bit, but I found myself composing lines of prose and even rhyme in a bid to preserve and record what I was going.  I spent those hours playing with the words, and crafting ideas and phrases to express what was in my mind.

My mind turned into a kind of incubator for words, thoughts and ideas and the solution about what to do with these formed in my mind for a good few days before I did anything about it.

The solution?  The more I thought about it, the more I felt compelled to blog about what was going on.  However, I was concerned thought that it could be too revealing, too personal and possibly too upsetting for friends and family if I downloaded everything from my mind straight onto the public domain.

My first step was to post a Facebook status update saying that my head was overflowing with thoughts and I had a compulsion to blog –

“FBG’s head is full processing all that’s going on and feeling a very strong urge to blog it – would I upset anyone if I did?”

The response was overwhelming – and unanimous – DO IT!!  And as one friend pointed out:

“Blog away! Anyone who doesn’t feel comfortable is free to not read!”

And the rest, as you would say, is history.  I had been blogging about life and work in Asia for some time, but this would be a new blog, albeit from the same Feisty Blue Gecko, which would focus on my encounter with Breast Cancer.

This new blog was hatched on 30 October last year and it rapidly took on a significance which was largely unexpected.  It took several weeks in fact to record the detail of those early days, not helped by Twang Arm, but I was also able to share the smaller details as they happened.

I have found over the last months that blogging has served several purposes.  It has helped me to rationalise everything which was happening.  I also wanted to document and record what was happening and how I felt about it, because I knew I would forget the detail and forget the sentiment.  Being so far from friends and family, it was also a way of updating the detail of what was happening.

I had not anticipated that it would be a marvellous way of connecting with so many other women in a similar position and making close, cyber friendships.  I had also not anticipated just how healing and constructive it would be through this past year.  I also believe that it did indeed “download” a lot of what was going on and prevent it from taking an unhelpful presence in my mind.  In other words, I did not anticipate how big a role it would take in my new post diagnosis life.

So when I saw this phrase last week ((I think it was on “Cancerbanter“), it leapt at me immediately.  It so beautifully communicates how these two relate to each other and to me!!  A great new motto!

 

“Cancer sucks, but blogging rocks!”