Tomorrow

When I arrived back in Yangon in November 2010, following my diagnosis, surgery and the first two rounds of chemo, I remember sinking into the chair in our living room with a sense of exhaustion and relief. We had spent hardly any time in our new home before our sudden departure and did not know if we would be able to return. But return we did, almost 2 months later and to a very different Yangon. We had left while monsoon was drenching the earth and when we returned, the rains had evaporated, the earth was already dry and the sky clear blue. And our garden was glorious. The rains had nurtured the mature trees, the bamboo, the hibiscus and frangipani and we were surrounded by lush greens of every shade, punctuated by flashes of tropical colour. Our little home has large windows and the greenery outside brought a sense of calm and healing. I had not consciously craved such tranquillity until I found myself overwhelmed by the comfort it brought.

home sweet home 3For some reason, I was taken by a compulsion to plant a banana tree in our garden. I had long wanted to have a banana tree in my garden since living in Asia. That is something you don’t see in many Scottish gardens. I remember friends in Nepal planting a banana tree in their home in the southern plains and I was astounded at how quickly it grew, blossomed and then produced fruit. Now, returning to Yangon I felt an urgency in planting my own banana trees.

Happily, such things are easily done here and in no time there were a number of young banana trees in the garden, keeping the mango tree, the lime tree and the papaya tree company. They grew easily and I kept an eye on their progress as we moved through the gruelling triathlon of treatment, travelling back and forth between Yangon and Bangkok.

home sweet home 1

home sweet home 2

A few weeks ago, I saw a quote on social media which transported me instantly to the time and emotion of that need to plant the banana tree. I realised that there was something subtle and primal within that compulsion. While I was facing my mortality and the demons which accompany these thoughts, something within me was rising above that place. I was investing time and emotion in my own future, in the shape of a banana tree.

tomorrow More than ever I needed to believe in tomorrow.

And I still do. The cycle of growth, the seasons, the rising and the setting of the sun and the moon are things we take for granted but which are at the very essence of our existence. When I wanted to plant those banana trees, this was in the belief and desire of seeing them grow and flourish. That belief in tomorrow.

We still have our banana trees. They produced healthy red bananas the following year and the plants now tower above me. A tropical climate provides rapid results but the same would apply to any growth, whether flora of fauna, rooted in the principle of tomorrow.

Of course I still believe in tomorrow, though I no longer treat it with the same cavalier attitude.  None of us know how many tomorrows we have, and cancer pushes our belief in tomorrow in our face and laughs.  But we can smile back gently and plant our trees while we invest in the belief of all of our tomorrows.

Homo Sapiens?

These days I often find out more about news commentary or updates through my Facebook feed than the traditional news sources. These can be mundane commentaries on American Idol or the Eurovision Song Contest through to the highest profile of news events, natural disasters and tragedies. I learned of the MH17 crash on a kind of slow reveal on my Facebook feed on Friday morning, the day taking on a suddenly very different tone to the one expected. First was a reference to MH17 and expressions of disbelief which drove me to scroll through a night’s worth of newsfeed to learn of the tragic loss of an airliner making its way routinely across the globe from Amsterdam towards Kuala Lumpur. A route which I will be travelling in a week’s time, though my departure point will be Bangkok.

I know that the investigations and time will tell us what was behind this, but for the moment I am working on what is known.  That some incredibly sophisticated surface to air missile or some such weapon appears to have been launched at a commercial airliner and resulted in its destruction along with the loss of the almost 300 lives on board.  I had no idea that there was such weaponry in existence which had the capacity to reach, never mind destroy an airliner at cruising altitude. How naive am I?

The day was heavy, thoughts of this unimaginable event uppermost in our minds and conversations. News that many on board were travelling to Melbourne for AIDS 2014, the 20th international AIDS Conference in Melbourne came at some point in the day.  This was getting a bit more personal now, as many of my friends and colleagues work in this field.  And more than the personal connection, the loss of people dedicated and specialist where these are so needed.  Any life lost is unacceptable but to lose brilliant minds unnecessarily is even more difficult to absorb.

I arrived home last evening, and stepped back online to catch up with any news or progress.  And my heart stopped when I read a post from a very dear friend, who I will meet in the UK next month. He had arrived in Melbourne for the conference and was utterly distraught to find out about the crash when he had arrived. His distress was all the more as he had been given two options for his travel to Melbourne.  He had opted not to fly on Malaysian, but on the other flight.  I have no idea what the reason would be, and often our choices (after cost) are based on flight timings, connections and routes.  It is a choice which he will never forget, I am sure.  And I simply cannot get my head round this. That by some possibly arbitrary quirk, some have lived and others not.  This is just so close to home and I am having trouble processing it.

And the part which is really troubling me is this.  We are homo sapiens. We are the race which has been gifted with intellect.  We deliberate and think.  We study and write. We are able to design and invent.  We are capable of abstract thought.  Quite how engineers and scientists are able to create what they do is always beyond me.  I cannot comprehend how planners and architects can create plans for bridges and houses and that they actually work.  How do physicists know that their theories will work when they are all on paper? It is a mystery to me.  They have brilliant minds which work in a way very different to my own.  And homo sapiens has created some pretty amazing stuff.  The car, telephone, computers, incredible communication technology and of course changed our world and lives through mass transportation.  Such as aeroplanes. Amazing indeed.

genius 2

But what is it in our race that uses brilliant minds to create things which cause destruction, death, pain and fear?  How is possible that minds of genius can be diverted to such destruction? How can this be possible when we live in a world that is unable to ensure that all have access to clean water, or basic health and education services?

How is this possible in a world where we have been spectacularly unable to find a cure for so many illnesses and diseases?  Lethal illnesses including AIDS and cancer? Are we such a wise race after all?

 

A silly cut finger and fast growing cells

The most inane and banal of incidents can set off a trail into unexpected territory both familiar and unfamiliar…….

Just over a week ago, hubby came home with a gift he had received.  A proper Swiss Army Knife.  Those ones with all the gadgets and tools all artfully contained in the body of the knife.

swiss army knife

These are fascinating little things, and I could not resist having a look and exploring what tricks it would contain.  I gently pulled out a little penknife blade, taking care with my crumbly finger nails which have no capacity to grip. I teased out the little scissors and looked around for some paper to test them on.  Then I pulled out another mystery implement, wondering what it would be. Snap! The small blade which it belonged to flicked open and caught my finger tip, slicing a neat but deep cut into the finger. There is an instant of regret at such a careless action which is rapidly taken over by the need to act.  Thanks to warfarin, this small but deep cut was producing rather a lot of the red stuff and I needed to stanch the flow as quickly as possible.  With my arm elevated and the wound held firm, I finally managed to stem the bleeding and carefully cleaned the damage.

I was very quick to blame cancer for the greatest part of this unfortunate incident.  Residual peripheral neuropathy, thanks to chemotherapy (Taxotere) has brought me numbness in my fingers and toes numb toes.  Numb fingertips cause clumsiness.  It is not a very good idea to explore a Swiss Army Knife with numb fingertips, especially with added crumbly fingernails. Adding warfarin and its blood-thinning qualities adds a frisson of excitement to the mix. That is also directly attributable to cancer and its treatment.  And if I really want to push it,  I can also blame the lack of wisdom in meddling with the knife on the cognitive afters of chemo.

It never fails to amaze me, how much a tiny nick somewhere like the top of the index finger can impact on so many every day actions.  Getting dressed, eating, typing and holding a pen all became awkward and uncomfortable with the damaged finger.

The following day, I struggled through (happily it was a Friday) and was glad to get to the weekend.  I was especially worried that the cut might get infected in this climate, and that it would not heal given its depth.

So I was very surprised that on the Sunday, I noticed that the cut was healing particularly well and cleanly.  By the Monday you could hardly see the cut at all and now there is just a trail of dry skin which marks the scar.

And that’s a good thing, isn’t it?  Fast healing, clean barely visible scar?  All good.  So why did my head turn this into something worrying?  Why did I find it so hard not to associate the rapidity of healing cells with the rapidity of multiplying sinister cells.  How does a good fast growing cell differ from a bad fast growing cell?

It shows how vulnerable we are to those paranoiac thoughts, to those trains of thought that are barely logical or sensible yet take over a rational mind. A mind which is especially fragile in the run up to the next round of regular but scary scans and checks.

This is the story of a tiny cut finger.  This is also the tale of a tiny scared soul, about to pack the fatigued travel bag, braced for whatever is ahead and barely able to contain the fear and anxiety.  The afters and sides of cancer and its treatments indeed continue to wreak havoc on the body way beyond diagnosis.

Yet that is not a fraction of the sabotage it introduces into a sensitive and frightened mind.

shadow selfie blog

After Words

I was astonished by the level of interest and response to my “thanks, but no thanks” rant last week.  I was in part reassured to know that I am not alone in the physical and emotional space and that these “afters” and “sides” of cancer and its treatment are very real and encroaching.  However, at the same time I was saddened and frustrated that so many of us are struggling.  Often silently, because we do not want to appear ungrateful or to upset family, friends and those around us.

From the outset in this cancer experience I have always reminded myself that there are many things which are not in my control, but many which are.  And how I live the cancer deal is one of those in my control.  I would rather be flippant and feisty, and poke fun at cancer than dwell in the doldrums and feel unhappy with my lot.  It just is what it is and I get on with it.  Mostly.

What came across clearly in the comments and conversations prompted by the rant, was the fact that amidst this weariness, we feel compelled to maintain a positive outlook and we feel guilty when we sometimes want to scream and stamp our feet.  Well perhaps not stamp the feet as they hurt too much!  There was a widely shared sense that we do not allow ourselves to have off days, and times of frustration or anguish.

I have been adjusting to these side effects of these meds for some time, and last week reached the point where I lifted my head out of the sand and realised that the pain and discomfort are such that there are many things which physically I can no longer do.  I have had to acknowledge with some resistance, that the break I have booked for next month will be far more physically challenging than I have prepared myself for and that is beyond frustrating.  This is not about inconvenience, this is about debilitating physical effects which are stopping me doing what I have long taken for granted.   For example, one of the favourite parts of my work, visits to our project sites are increasingly difficult – I used to hop on and off of boats, sit on the floor in villages and walk for days in the Himalayas.  Much of that is now too painful, unsafe or, sadly, beyond my capacity now.

That is when I reached that tipping point and this rant took shape.  I feel better for venting, but nothing of course changes the physical deal, the side effects are still there, and I still have difficulty walking. But it is what it is.  I deal with it. I get on with it and adjust as far as possible.  Mostly with a smile, but sometimes, it just gets too much and I weep.  Not often, but sometimes.

These past weeks have been tough ones, and the prospect of more of the same in terms of side effects feels heavy.  But I do work hard to balance this and make the most of what I DO have, and carpe that diem.

Most days I am incredulous that I have been able to realise my dream and ambition to live and work overseas, in such extraordinary places.  I have now been in Asia for 13 years, and am humbled and moved by the incredible experiences I have been through and the wealth of inspiring and amazing people I have known.  I love my life, and I have no significant regrets.  There are of course a heap of things I still would love to do, sitting in my wish bucket.  But, I have so much to be thankful for and if someone called “time” tomorrow, I would not plead for the chance to do that something I have not managed to get round to.

Even as I sit here, looking out onto the lush garden, the wind whispering in the mango tree, frogs croaking as more rains approach, I still have that sense of naïve wonder and fresh enthusiasm at being in such a place.

However, some days it just takes that extra energy and determination to get on with the day to day, and I find that the reserves have run low and it is just out of reach.

It is what it is.

Sometimes even geckoes have to rant.

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Living and dying across cultures

There’s one thing about cancer that is undeniable. And that is that it abruptly confronts you with your mortality. Which is interesting, because many cultures, have so many taboos around death. We don’t talk about it. We remain in denial, about our own deaths, and of those close to us. We use euphemisms when a person dies. We too often avoid the topic. We even hide it from our own minds.

However, when you step over the line in the sand when we learn we have cancer, or if someone close to us is diagnosed, that taboo seems to melt away. Being part of a close cancerhood which includes too many with metastatic cancer, means that the subject of death is always there.

I learned a great deal about death and grieving when my father in law died nine years ago in north eastern India where my husband’s family is from. The family belongs to the “Tamang” ethnic Himalayan hill people and are very devout Buddhists. As a foreigner (and new daughter in law) in such an intense situation there was the potential for a very difficult time. I had no understanding of the rituals, or what would happen and my own cultural block prevented me from asking. This was eased enormously for me, when one of my husband’s aunts took me to one side and passed me “The Tibetan Book of Living and Dying” and pointed me to the chapters on ritual and belief around death.

As well as being enormously helpful and enabling me to understand and engage as appropriate in the rituals, I learned a great deal from that book as well as from being with the family throughout these rituals. I recount this from my memory of that time and what I have retained from the explanations from family and the book which accompanied me throughout. This is my own understanding and I trust that it is accurate, and am happy to be corrected if I err at all.

I am a complete novice in the teachings of Buddhism, so please be gentle with me if I either over-simplify or misconstrue. It is well known that Buddhism is based on the principle of reincarnation. This is where the way we have acted in this life influences and shapes where we head in the next one. As such the process of death is one of the soul passing to the next life and very important. It is critical that the process is carried out properly.

I felt humbled and privileged to be part of this when my father in law died. I found this process enormously respectful and helpful in that it guides the bereaved through a process where they focus on the transition of their loved on in stages and helped me to understand how differently we deal with death in different contexts.

The time of death is believed to be very traumatic for the soul of the one who has died and there is a transition stage known as “bardo” which the soul passes through. It is very important that Buddhist monks guide the departing soul through this process, with rituals known as the “phowa”. This is intended to help the soul understand that they have died and to support them to gradually come to terms with this. Over these early hours and first days following death there is chanting to comfort the soul, and the family say kind things about their lost one, leaving out their favourite foods and drinks to make sure they feel loved and not distressed. The funeral takes place very soon after death, at a place and time identified by the monks.

The 49 days following death are very important in the Buddhist rituals and beliefs, representing seven periods of seven days each. At each seven day point, rituals will be held in the home, Buddhist monks chanting and carrying out the appropriate “puja” to support the soul on their journey towards their next incarnation or next life. At the third seven day period, that is on the 21st day, an important “puja” is held. At this point the soul moves from the stage where they are newly passed, to that where they are preparing for their next incarnation. While in the first 21 days, the soul is believed to be nearby and moving through this “adjustment” phase, after that it is believed that on one of the next seven day points, the soul will pass to the next life, therefore either at the 28th, 35th or the 42nd day.

When the 49th day comes, it is known that the soul has moved on and there is a major day of rituals and puja, with family and friends coming from far and wide to pay respects and to grieve. It is a painful and highly emotional day, for it is on the 49th day, the family and close ones know that their loved one has moved on and they grieve their loss.

loss

Today marks the 49th day since my father’s death.

Post Script

Strangely I dreamed of my father last night, after I had written this.  Strangely, because this is unusual.  I do not dream often of my father, I never have.  I think of him frequently but rarely dream.  Last night, in my dream, he came to visit us in our home.  He was looking so well, was dressed in his usual everyday “countryside smart but casual” clothes and standing in the garden near our door.  I was pleased to see him standing and walking unaided, and out and about as he had been so frail when I last saw him. Memory was clearly blurring with reality.

He didn’t come into the house, but we stood outside and chatted.  Small talk.  Chit chat.  Nothing of substance, but pleasant and lighthearted.

Writing this post and thoughts of the 49 days perhaps prompted my subconscious to form this dream. Or perhaps not?

What if…………

Equity

Dignity

Respect

These are principles which are at my core, which fire my soul more than I care to admit. They underpin all that drives me.

And I am driven by two critical injustices in the world.

There is no cure for cancer.

Access to a good education is out of reach for far too many.

cancer and education

So this very simple statement doing the rounds on Facebook has hit me with breathtaking force and unusually prompted me to stick my head way over the parapet and shout.

What if…………………?

From a Writing Prompt to a spat out Ugly Truth

Sometimes we can be trundling along, just getting on with what we get on with when something stops us abruptly in our tracks.

Two weeks ago, I was preparing for the fortnightly writing group, planning to go along even though I had no writing to share.  I had even confessed to the other writing group folks that I would be a passenger that evening, soaking in their creativity and critiquing in one direction.  Not only had I nothing prepared, I had not had the slightest idea or spark of inspiration. On top of that, I had just returned from Bangkok and the latest round of exhausting tests.  Nope, I was under no illusions that I would be taking anything with me that evening, in the shape of words on a page.

Then I received an email from one of our cosy number, Becky in Burma, in which she mentioned the e-course she was part of and saying that she would probably bring something she had written as one of the exercises.  With her email was an appeal to print a paper copy as that is always easier to share.  Attached to the email was her writing, along with the exercise details.

Of course I had a look at her poem, a heartfelt and powerful piece of writing.  Then I looked at the prompt, and realised that a strange thing was happening.  My mind was whirling and before I knew it, everything around me was strangely disconnected .  Oblivious to my surroundings, I was scribbling away furiously, words pouring out, emotions running amok, struggling to keep back tears.  Within less than fifteen minutes, I put my pen down, dazed, stunned and spent and I looked at what was on the page

Out of absolutely nowhere, and with less than hour to go until our meeting time I suddenly had something to share.  Not a piece of eloquent writing, nor a passage of creative or experimental prose but a page of raw, ugly emotion and truth which had been lurking not so far from the surface, only to be spat out violently.

I have deliberately not edited this in any major way.  I have made a couple of very minor adjustments, but have left it very much as the words formed.  And that is intentional.  The prompt was “What if I were to tell you”?

And clearly I had a lot that I wanted to tell.  Even if I hadn’t realised it.

I posted the words which had crowded in unbidden, as my own very first Poetry Friday. Judging from the many comments and reactions, it seemed to strike a chord. It appears to be not quite a universal truth, but seemingly a widely held one.

As a lay person, I can only speak of how this appears to me. I feel strongly that diagnosis brings what I see as a psychological isolation. The world we enter on hearing the “you have cancer” words frequently forces an unwanted gulf created between those diagnosed and all close and touched by that diagnosis.   And often we want to protect those close to us from the insidious reality.

WikiThe_Scream

 

And it is as difficult to articulate these ugly truths as it is to hear them.

Poetry Friday – “What if I were to tell you……”

What if I were to tell you……

What if I were to tell you, how scared I get.

What if I were to tell you, I think about it every day. At least once.  Though most days, so many times I lose count.

What if I were to tell you, it doesn’t get better.  Not really.  Just different.

What if I were to tell you, it makes me feel a hate so strong it stirs fear in my soul. Fear of my own hatred.

What if I were to tell you, I will never be the same again. I know.

What if I were to tell you, I wake in the night, wet tears reminding me. When I thought I had forgotten.

What if I were to tell you, that every twinge, every hint of pain brings a sweeping new dread.

What if I were to tell you, that hearing it is my fault ignites a fire of anger in my gut.

What if I were to tell you, it is just not as simple as “moving on”.

What if I were to tell you, that long after all around me have forgotten, it is my first waking thought.


What if I were to tell you, that once you hear that word, the mirror shatters.  The life you knew evaporates.  Replaced by a parallel, silent, world.  One built on assumptions.


What if I were to tell you.  And you were to hear me.

And understand.

Balinese lily illuminated by candle light

©  PCR 9 January 2013

Embracing and nurturing 2013 with a three word mantra

Whispers of cloud, streaked pink and gleaming are scattered across Yangon’s sky as the sun creeps over the horizon carrying promise and hope of a new day, of the first day of 2013.  The shrinking flames of the candle flicker at the shrine beside the tree where the Nat spirits live. It is the right time to share the three words which I have selected to encourage and guide me for the coming year …………

Yangon winter sunrise

This is now the fourth year which I have used the “three word” exercise instead of resolutions, to inspire the coming year and to use as a motivation for change.  In fact, I really did not make resolutions before then.  They did not hold much meaning for me.  Of course, there were things I wanted to do or change, but I did not necessarily find that the New Year was timely, or adequate, for that.

When I first saw the three word exercise, in the final hours of 2009, it instantly resonated with me.  The timing was exquisite, coming after my diagnosis and in the midst of chemo.  The words tumbled into my mind easily, singing encouragement and hope.  They formed a mantra which truly enabled me to think forward, and explore what my priorities should be for the coming year as I moved through treatment and into a new unknown.  It was motivational, affirming and inspiring.

And doing this exercise as the year closes has continued to be so. I feel that the three words chart my hopes and priorities for the year, and give me something to focus on. They whisper to me as I continue through the years, and I cherish them. I can tell so much about those years from these words:

2010               Recovery, discovery and laughter

2011               Harmony, vitality and adventure

2012               Resilience, escapade and wonder

It is fascinating to look back and see, through these words, where I was emotionally and physically this time last year.  And to reflect back on how apt they might have been for 2012.

In terms of resilience, oh my goodness that has been apt.  It has been a reminder throughout the year to really focus on emotional and physical wellbeing in order to have reserves to draw on when needed.  And how they have been needed. Serious health issues for me and close family members have led me to sink time and again into the bank of resilience and, I hope, have to a certain extent lessened the struggle.

I am glad I also selected escapade.  This has been a reminder to carpe that diem, and do things in the here and now.  My pulmonary embolism in July, and the fright in October, with the bone scan and raised tumour markers reaffirmed how important it is to do the things I want to and not have regrets.  These do not need to be Big Things, although trips to Hong Kong, Timor Leste, Indonesia, Cambodia and Norway are pretty big in the scheme of escapades!   Just as valid have been those spontaneous and smaller escapades, such as cycling off down unknown paths with my fantabulous bike, or taking the circular railway around Yangon on Christmas Day.

And as for wonder, this lives in my very soul.  I am curious by nature, and my mind wanders off on trails of thought unbidden, leading me to fascinating destinations and passing through unexpected places.  Watching a kingfisher at the poolside took me on an incredible journey of wonder in every sense.  I know I need to hold on to that awe and appreciation in what is around me.  I know that a healthy curiosity is critical to my psychological and emotional wellbeing.  That is the way I rock and roll!

Truly, these words have both guided me, serving as a reminder of priorities and also served to preserve the essence of what turned out to be a tough year for me.

So as the year has drawn to a close, I have been wallowing in word choice again.  Last year I was awash with words and found it quite difficult to choose.   The process took me many days.  This year the words came to me with little searching.  I selected three words almost immediately and although I have tweaked and refined as I have taken time to deliberate and really live with those words, two out of the three are my original choice, and the one changed is very close to my original selection.  And those words for 2013 are:

Focus, treasure and design

Focus

Last year I spent a great deal of time selecting the right three words for the year – “resilience, escapade and wonder”. And of course, just a few days into the New Year, I was already wondering if I had made the right choice. I am a bit of a butterfly and flit from task to task, from idea to new idea and am easily drawn away in unplanned directions. I remember thinking that I needed to focus, to see projects through after the novelty wears off and to set clear goals and objectives as well as commit to seeing a task through.  I particularly like the fact that focus exists as a verb as well as a noun and thus expresses deliberate action as well as something tangible to aim for.  It will remind me that I must focus on my health, on ensuring a balance between work and leisure even in such an exciting, changing and increasingly demanding environment. Ensuring focus will also help to bring clarity, in the literal as well as the figurative sense.  Yes, focus is an important word to set the tone for my year.

Treasure

The second word has been a bit slippery!  My earlier choices included nurture, nourish, cherish and embrace.  With embrace, I wanted to capture that sense of not just accepting whatever comes my way, but moreover to grasp it fully and transform it into something positive and to my advantage.  In my mind is the shadow of my January checks and the checking of the tumour markers.  Whatever the tests and the future holds, I must own it.  I must accept and take control of all that I can. Embrace had appealed in that it conveys a sense of acceptance with the added element of taking control.  I had also been taken by nurture, with its essence of encouraging growth and creation through care.  If I had to select just one word for the world, then it would be nurture.  We need to nurture all around us, our children, our partners, parents and family, our colleagues, friends and acquaintances.  We need to praise and encourage. Then I settled on “cherish” which is a beautiful, rich word. I felt that it conveyed all of the previous aspects, as well as a beautiful sense of when caring for the most precious things to us, protecting and treasuring them.  And that is when “treasure” came rushing in from the wings and swept over cherish gently setting it to the side.  Treasure has been my final selection because it has a wider range of meanings, which include cherish.  I also love the fact that it is also a both a verb and a noun, and that symmetry really calls to me.  In its verbal form, it is very close to cherish, with the added sense that it is something very special. I love treasure as a noun too, because we are surrounded by treasure, in even the most ordinary, everyday entity.  I love to pick fallen frangipani blossom in the morning, and call it morning treasure.  As modern life becomes more sophisticated and complex, maintaining a sense of naivety and wonder is refreshing if not essential to our emotional well being.  I also apply this concept to my physical well-being and know that I must continue to focus on health and activity.  My wonderful morning swim and cycle routine is a treasure indeed.

It is so important to notice the simplest elements in our surroundings and value them.  We really are surrounded by treasures.

monsoon drops captured in leaves

Design

My third word is design.  Again it is a noun and a verb, and again it has a variety of meanings which speak to me for the coming year.  It represents the importance of creativity in my life and serves to remind me to prioritise those creative activities which I so enjoy. I need to ensure that there is space for art, reading, writing and imagining, and that I must ensure balance in my life. Design also conveys a sense of deliberate action, as in the phrase “by design”.  This chimes with me so much.  No matter what challenges are thrown in my way, I must retain control and make wise decisions as I follow the path I choose.  I must ensure that I invest effort and due consideration and don’t just allow myself to be swept along.  Life is not about what happens to us, but how we deal with what happens to us, and we must remember that.

IMG_5059

So these are my three beautiful words, my mantra for 2013 and my guiding star.  The past year has been tough in so many ways, and I hope for a year which is kinder.  I know that the dark shadow of the oncology review is in the first days of 2013. I move towards that, holding tightly onto these words, trusting that no matter what this brings I will be guided through it.

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!!!