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.

 

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!”

The birthday present

I’m afraid it is time for another small confession.

One of the prompts for my visit to Cambodia was to continue a strange practice which started on my trans-siberian epic journey 12 years ago.  Wait a minute, how many years ago?  Impossible!  Well, however many years ago it was, it sparked the practice of spending my birthdays in Asia.  Over the past 12 years I have spent my birthdays in Nepal (several), Thailand, Mongolia, India, Sri Lanka, Myanmar and of course the one where it started – China.  I have a strange pull to spend the day in a different Asian country each year if possible.  Hence the Cambodia visit.

When I revisit my thoughts from this time last year, I realise how far I really have come.  Last year I spent a quiet and reflective day, and I can see just how much I was still wrapped up in a cancery space emotionally and physically.  I had only just started going “topless” a couple of weeks previously, braving my scalp stubble to the world, and was still suffering from the later stages of shingles.

For the first time since starting to blog, I am going to do something really radical just to highlight how far I have come indeed……..

This is a photo.  Of me.  Last year.  On my birthday.

I am becoming less precious about being anonymous, and while I do not like photos of myself (especially the ones where I have “cancer” stamped clearly on my forehead), I do feel more able to come out from behind my protective barrier.  And one big reason is that I feel able to share a picture from my birthday this year, here in Cambodia.

My day was firmly about living in the present.  None of know what is ahead and with the cancer lens in front of our eyes, fear and anxiety are never far away.  So I grasped the mettle and decided to do something I have long wanted to do and not think of the distant future and what might or might not happen.  I booked myself an “off the beaten track” trip for the day and despite torrential monsoon rain, I had an incredible day, slithering around villages and clambering over temples like an aging, bespectacled female Indiana Jones!

I still have my anxieties, and I still fear the return of cancer.  I know that won’t change and will intensify and fluctuate with scares and checks.  But for today I have discovered that I can live in the immediate, here-and-now present.  And that is the best birthday present possible.