Introducing Catherine, Claire and Clare…….

This is turning into the week of the Sisterhood!  The very Sisterhood prompted by breast cancer, enabled by the internet but brought to life by the true connections that we have. On Saturday I met Kirsty in real life, which was a rare and precious experience.

Today, I want to talk about another virtual friend – my peer, Catherine.  Catherine blogs at her own site –  Bumpyboobs as well as being one of the regular writers on Facing Cancer Together.

catherine

I am not sure when I first connected with Catherine, but I know that we found ourselves in the same batch of  bewlidered breast cancer interns appointed around the same time frame. Through our blogs, the Twitter #bcsm discussions and other online connections we soon realised that we shared a great deal more than the breast cancer catalyst which had introduced us.  No sirreeee – we have way more than that in common!  Catherine and I are both lovers of the written word, and more than that, aspiring writers.  We have both lived in countries very different to the one of our origins and embraced those new cultures with an open heart and eager eyes.  We each married a man from a different culture, with another mother tongue with the rich and beautiful family relationships which that brings.  We each appreciate and love photography and capturing those special everyday images as well as the extraordinary.

Indeed, there is a great deal more to our connection than that initial catalyst.

Catherine and I are indeed peers in the breast cancer world, our diagnoses and treatment paths were in a similar time frame.  Surrounded by a warm and caring community, we were siblings in this mire of post cancer diagnosis that we wade through. So recently, when the slow reveal of tests and diagnostics showed that Catherine’s cancer has metastised, we sisters gathered round in a bid to show our solidarity and support in any way in which we could.

And what did Catherine do?  Of course she swore a bit.  A healthy curseload of expletives and anger directed straight at cancer.  And then she set herself a goal.  A target for the coming months.  She re-evaluated the variety of plans and dreams that she has, and set herself a revised, clear target.

And that is what her Guest Post is about.  Catherine has been working on a very special project.  Of course the cancery stuff is there, meds are being trialled and the Big Thing that is a Stage 4 diagnosis is very much in the day to day.  But Catherine is not letting that take over.  She has turned her focus to a very clear and specific writing goal.

And that is the topic of an inspiring Guest Post about “Claire and Clare” which will be on Feisty Blue Gecko in the coming hours.

bumpyboobs3

We promise you more, very, very soon………

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Westering home

So, after 24 days living out of my suitcase, changing plans and generally following a nomadic lifestyle, I spent Monday attempting to cram all of my belongings into my bags in an attempt to shrink them into the allowable weight allowance for my return to Yangon.  This involved a few naughty tricks, such as planting some of my heavier documents and materials in beside laundry in the expectation that this would make them lighter, if not totally weight free.  The heavier papers I squeezed into a large carry on bag, and still I had a number of books which refused to fit in any of these bags.  My task had been complicated by the fact that I had some weighty things for family in India, and of course having had to cancel that visit, I would be taking them to Yangon instead of Darjeeling.  I try to travel fairly light, but with the different purposes of the various parts of my 24 day shufty I inevitably had quite a collection of goods.  I had so much that the usual compulsory Bangkok shopping items such as Thai curry paste, various cheeses, Boots shampoos and shower gels and other essentials had to be sacrificed (as in not bought, rather than offered up to some airport gods).  Somehow that did not appear to have applied to a few books, which I had managed to accidentally buy.  Interesting these laws of nature!

My flight was early so I had a taxi ordered for 5.45 am.  I was generally faffing around the room at 5.10 am, juggling with the various permutations of where to stash away the various bits and pieces which still had to be stashed when the phone rang.    My taxi was waiting for me!  Now I am happy to be on the early side, but this was not helpful!  Still, with the last final touches to the art composition that was my luggage, including an impromptu piece which was formed by stuffing a number of books into a carrier bag, I closed the door and left what had unexpectedly been my home for the past days.

I approached the check in counter rather apprehensively with all my bags, and handed over ticket and passport along with a big smile. I waved my bulging carry on bag at the ground staff and asked if it was ok for carry on.  (Quite what I would have done if she has said no, I am not quite sure – though part of my keenness in being early is to be able to regroup in the event of something like that happening).  She gave it a cursory nod and asked if it had any liquids in it.  Being completely dry it was apparently fine for carry on.  Along with the carrier bag of books and my handbag.  And the fleece and pashmina that I was carrying.  You get the picture!  It was not much fun going through security, taking out my laptop and placing all of these into the trays.  The staff were quite bemused to see me fill four trays!  Still, I was though and able to head to the airline lounge.

Bangkok Airways has a policy (I am not sure if it is new or not, but it is certainly most welcome) of providing lounge access to all passengers not just those with posh tickets.  So I was very happy to head to the lounge and its free internet and free flow tea.

I was especially happy because the timing of my fight, and the access to internet meant that I could join the #BCSM (Breast Cancer Social Media) Twitter discussion for half an hour before I had to go to the departure gate.  I particularly wanted to join this discussion too…………..

And that leads me towards a very different topic, one which will be the subject of its own post very soon and one which is very much on my mind as I am back home.  This week’s discussion focused on renewal and featured my friend Terri of A Fresh Chapter.  Terri spoke about her “Adventure of Hope” which she has embarked upon, following a period volunteering in Africa after her cancer treatment finished. Please read the transcript – it is very powerful.  In the discussion, she highlighted how cancer is seen in developing countries, and this is something very close to my own heart, having been diagnosed in Asia.  In fact, I have had a number of preliminary conversations about my own possible venture into “doing something” in this part of the world.  And to give you a flavour of why I feel so strongly, I am going to share a Tweet from Terri, which hit me with a force that was almost physical.  She tweeted:

“We can’t imagine the stigma around cancer in the developing world. Women would rather get HIV than cancer in Africa.”

This does not underplay the enormity and fear of HIV (which is immense) but rather shows just the level of fear, taboo and stigma around cancer and the challenges in accessing good standards of information, treatment and care.

And this is why I will be thinking and talking a whole lot more about this in coming days and weeks now that I am back home.

Out there

My eyes were caught by a very interesting tweet this week, from blogging friend Bringing up Goliath where she asked “Wondering when to tell a new friend my breast cancer story. Has this happened to anyone else? How did you bring it up?”

This is something I immediately identified with, and there followed a flurry of tweets and Facebook discussion which quickly revealed that this is a dilemma faced by many of us.  This was developed into her blog post which appeared later the same day.  The post beautifully describes the quandary we find ourselves in when connecting with someone new, developing a friendship and when and how to “disclose” such an important piece of personal information.

At the crux of this is the fact that although many of us are not in the midst of heavy treatment, we have been and we live with the knowledge that we may again be.  That is just the reality of the diagnosis.  It is not about being negative or positive, it is just a fact.  It might not be visible but it is there.  so this means it is an important part of who we are now, it is a Big Deal and it is Never Over.

This is a predicament I often find myself in, living overseas and amongst a community of transient people.   In my professional and personal life I meet new people regularly.  One of the first questions we tend to be asked, after name and what are we doing here, is “how long have you been here?”  And that is where it starts to become difficult for me.  I have been here, in Myanmar, for over 2 years.  But my first year was the lost year and I don’t really feel that I can truly say I have “been here” that long.    But the question is usually asked far too early on to be able to clarify.  Depending on how much I feel I connect with this person I might say nothing, or I might drop a bland “I missed most of my first year due to ill health”.  And then I try to move the conversation in another direction so that I don’t have to “come out” so soon in a possible friendship.  But that then gives the problem that if I connect with that person more regularly, if we develop a friendship, then when is the right time and how on earth do I disclose this?  I have a strong urge to share this Big Important Fact, which has become an elephant in the room.  But I am the only one who knows it is there.

This reminds me so much of a similar disclosure question which I also struggle with.  Someone very important, close to me, is gay.  Lets call that person A.   In our own home context, disclosure, while never easy, is familiar ground.  However, in different parts of the world this is not an easy subject to broach and it requires a very sensitive reading of a context and situation.  As friendships and working relationships span a wealth of diversity in terms of nationality and background, so too do the values and beliefs held.  And that is something which must be respected and understood.  I remember misjudging a situation horribly in one country I lived.  I had been there for a number of years and developed some very close friendships.  One particular friend and I were very close.  We worked together on issues of diversity and equity which were deeply rooted and challenging.  We had also supported each other through a number of personal crises and problems.   So following a visit from the aforementioned A with their partner, I had a long chat with my friend.  Now A is very open and comfortable about disclosure, and I have “carte blanche” to be open about their status.  A signal was given and I shared with my friend the fact that A is gay.  To say that my friend was visibly shocked is an understatement.  I instantly realised that I had misjudged the situation and that she was most uncomfortable.  But like a disclosure about breast cancer, it cannot be retracted.  Once revealed it is well and truly out there.  We both changed the subject, and did not return to it.  I felt dreadful for having made her so uncomfortable and for not respecting and realising just how deep rooted beliefs are, even though we had worked together on diversity and discrimination.  But the incredible thing was, that months later, she raised the subject with me herself.  She asked if the friend who had visited with A was in fact their partner.  I confirmed that they were in a relationship and we were able to move forward.  It taught me such a lot about the complexity and diversity of deep rooted beliefs.  And she is still one of my closest friends nearly a decade later. But with every new friendship, if the topic of friends and families comes up, I always have to stop and think whether it is appropriate or not to disclose that A is gay or whether a little white lie is easier for everyone.

The awkwardness of sharing the fact that I have been diagnosed with Breast Cancer might have different reasons for its discomfort, but the result is similar. This is often further complicated in this overseas context where friendships are formed with people I might not connect with in different circumstances.  I live in quite a small city and in terms of expats (I really try and avoid using that term but find no choice here) it is like a small village.  And that means that word gets round.  It is no secret in social and professional circles that I am “the woman who was treated with breast cancer” but that does not mean I know who knows it, and that makes it more complicated.  And let’s face it, over a year after the end of the visible treatment and sick leave, it is not necessarily something which is still mentioned.

Another aspect of this mobile and transient life when coupled with the internet and technological advance, is the reconnection with people I may have lost contact with.  This has happened a number of times, thanks to Facebook and Twitter particularly and I am delighted to reconnect with friends around the globe.  But the same question arises, and is really difficult.  When and how do I tell them that I am not the same person in many was, as I was before.  And I am not talking about the differences due to surgery and treatment, but the difference in my mindset and psychology.

In all of these situations, I find that when I get to a stage that I feel that it is like “keeping a secret” not to have disclosed, then I try and seek a signal or opening.  I also drop little hints, being on long term medication, having been medivacked, having a serious illness hep to lay the foundation for the Big Disclosure.

This is a situation which keeps coming up and is not likely to stop doing so any time soon.  So when I am introduced to someone new here, and I am asked “How long have you been here?” I feel myself hesitate before I hear myself reply “Around 2 years……..”

A sinister business partnership? Or a conspiracy?

As I settle back into the swing of things, I know that not far on the horizon is my next round of checks.  For now though, I am still in an upbeat frame of mind following my break and the appointments are far enough ahead not to feel imminent.  So that means that Captain Paranoia is also on a bit of a break.  Although he may not be lurking on my shoulder at the moment, I know he is causing his mischief in many other lives.

With this slight distance I am feeling more rational than can happen at other times regarding the future.  A clear indicator is a glimpse at my web browsing history.  It is immediately obvious that I have not consulted Dr Google for a while.  In fact, not since Dr W laughed at the wirple, back in early July.

This is when I spot a rather interesting connection.  There appears to be some kind of business relationship between Dr Google and Captain P.  A rather sinister one at that.  And they both appear to benefit and feed on each other in this arrangement.

Does it sound familiar?  At the first sign of an ache or pain, appearance of a strange shape or bumpy area, development of a rash or spot, Capt P appears and starts whispering (or shouting) that Houston, we have a problem.  And what do we do?  Too often we run straight to Dr Google who is waiting, grinning malevolently in his 24/7 online consulting room with far too much information, much of it ill organised and not necessarily current.  He overwhelms us with graphic images and what appears to be terrifying confirmation of our worst fears.  Our minds freeze with another round of fears and worries.

We eventually log off.  Sleep is elusive, as the information from Dr Google churns around in our minds.  Capt P takes over another shift and cranks up his efforts to maintain a wearing and ongoing onslaught on our thoughts.

In this welcome space of clarity which I find myself in just now, it is abundantly clear that if Dr Google’s online Diagnostic Service was unavailable, then Capt P would not have such a great hold over us.  Similarly, if Capt P could be kept at bay, we would not be so compelled to consult Dr Google.  The challenge is then how to try and break this cast iron partnership and weaken the power which they wield over us.

In my view, having this knowledge is in itself power.

This week’s Twitter discussion focused on Post Treatment depression and there was a very lively and open sharing of the emotional fragility we have following a cancer diagnosis.  My own view is that while depression is very much a reality for many people post diagnosis, I feel that one thing we all have in common is what I would call a post diagnosis “frame of mind”.  This reflects the fact that we live life differently after diagnosis and we are generally very vulnerable to fear and anxiety.  We are far more prone to worry about our future.  The checks and regular monitoring are massively reassuring – but only if they show nothing worrisome.

This frame of mind is a fertile ground for the sinister partnership of Dr G and the Captain.

We do have tools at our disposal to stand up to the evil duo however.  In particular, we have each other in the online breast cancer community.  We understand each other and respect the harrowing worries that we encounter.  Many a time have I had my hand held across the divide.  We also have a number of reliable sources of internet information and we should ensure that we do not consult Dr Google indiscriminately.  We should turn up at the virtual waiting rooms where we know our consultation will be fair and credible, such as the Breast Cancer sites and not that terrifying Google images search engine!

So what do we have then?  We have an evil duo who are in all likelihood working in cahoots – Dr Google and Captain Paranoia.  They are supported by an arsenal of information and detail which we cannot begin to interpret without a very smart medical head.  To counteract this we have a wide reaching and sensitive community who “get it”, and understand our fears and anxieties.  We also have our “real life” Doctors – our oncologists and our surgeons for example.  They not only know their stuff, they know us, and mostly can guide us through the minefield of distressing and baffling details dropped in front of us.  We usually only see them at our checks and they are subjected to the collection of questions which we have been saving up in anticipation of our reunion with them.  Often we are waylaid by unexpected blood results of other questions and realise in the days following our appointment that we still have unanswered questions.  And Capt P just loves to latch on to these questions and twist them around in our minds.  He refers us directly to Dr Google……..

We need to try and break this cycle, fed by the Capt P and Dr G alliance.  I know that is far easier said than done.  Dr Google is far too accessible and Capt P ensures that his visitations are as distant as possible from our real life support.  We must therefore make a concerted effort to resist Dr Google.  Capt P will then be weakened in his efforts to derail our thinking.  We have helpful guidelines, such as the 2 week rule (if a pain, ache or suspicious bump lasts for 2 weeks it needs to be taken to a Doctor).  We have our online support.  Oh, did I already mention that?  I guess that out of the sinister partnership, Capt P could possibly be credited with having a modicum of use.  He keeps us alert.  It is critical for us to be aware of our bodies and any changes that could be significant.  But to go any further than that sees him as a trouble maker who needs to be kept in his place.

I hope that this exposure of this intimidating duo can prompt us to do one thing.  To enable us to take firm control of our situations and enable us to strike a balance of being vigilant, sensitive and proactive without being obsessive.

Knowledge is indeed power.  So listen here Dr Google and Captain P – you guys are  RUMBLED!!!

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!”

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.