I wonder… Do the trees sing in Africa at the tail end of the day, as the sun drifts to the west, dragging the light, the colour bleeding from the sky in its wake, causing such rejoicing from the branches? Does the African kingfisher wear a smart, shiny cobalt jacket, slung over his shoulders, catching the early morning light, just like his cousin in Yangon? Does the frangipani blossom peep shyly up towards the African sky, pleading for just a few drops of rain, in return promising to release their scent into the surrounding air? Does the water lean to the right when it slips downwards from an emptying washbowl just like it does further north on the other side of the equator ? Does it rain at four in the afternoon in Africa, flooding lanes, prompting laughter and annoyance in equal mix? I wonder… What language do the frogs speak in Africa? Would they understand their Burmese friends as they revel and splash in the mud? I wonder so much about this continent that I have yet to properly meet. And soon I will wonder no more. Yangon, June 2016
I never tire of gazing upwards. Every sight is different. Stars may be set in well known families and formations, documented on parchment, yet each viewing of the night sky is different. Clouds and moodily lit skies tell new stories with each breath of air.
The skies remind me that despite our belief otherwise, individually we are tiny and insignificant. Despite what we are doing to the planet as a race, we are almost non existent in the face of the elements.
Recently I was returning from Bangkok from my last round of medical checks, and as always opted to sit in a aisle seat. Those monsoon flights may be short but the rain and attitude-filled skies can be alarming to fly through. Better not to look at those clouds too closely as we fly through them.
My late afternoon flight was approaching Yangon, and I could see that the the cabin was taking on a golden hue. Appropriate for arrival in the Golden Land. I glanced across the empty seat beside me past my fellow passenger at the window seat and was immediately captivated by the skyscape outside. There were layers of cloud, and the setting sun reflecting on the waters far below of the Gulf of Martaban, the northern part of the Andaman Sea.
Automatically, my hand was reaching into my bag for my camera to capture the magic in front of my eyes.
Whereupon I came face to face, quite literally, with a bit of a challenge. In the form of the passenger across the empty seat, who was comfortably eating her spicy Thai in flight meal in her window seat. It is impossible to be unobtrusive in these situations, but I did try, leaning over and angling the camera so that I did not capture her shoulders and noodles. She also looked up and snapped some pictures on her phone.
Within a few moments, the scene had changed. The light had altered, the reflection dimmed and the other-wordly scene outside taken on a much more familiar look. By happy coincidence, and the good nature of my fellow passenger, however, I had been able to capture and preserve the sight.
It has been a while since I have changed my background image here, and photograph of that moment provides just the right opportunity to change that right now, and share that moment right now.
In these days when we stare into our phones and devices oblivious to our surroundings, there is a stronger reminder than ever to pause, look upwards and drink in the free, ever changing moving pictures in the skies above us.
I have written in recent weeks, about my three words for the year. That has surprised me a little, as I usually revisit them later in the year to take the pulse on how they are working. But this year, there has been an unexpected nudge to check in early in the year.
Perhaps there is a greater need than ever for me to be guided by my words, and this is why prompts have come my way. And a lunar eclipse is a pretty impressive prompt!
It is especially timely for me to talk about my third word, realise. And I need to muster a little courage for this.
I have been writing this in my hideaway in the Laos hills, in the space where I found peace, inspiration and healing over the New Year. We have a week of leave over the Thingyan Water Festival and New Year, in Myannar, and I knew that I needed an escape from the intensity of recent weeks and months, and from the watery mayhem which takes over much of the region. As soon as the medical checks were over and Dr W2 and his flowery Songkran shirt had given me welcome news, I moved to firm up arrangements for a break I eagerly sought back in the hills near Luang Prabang.
The perfect creative space.
This is a very special space, not for everyone. If you are seeking entertainment and sophistication, gala dinners and spectacle then this is probably not for you. Entertainment is largely self made – there are treks to nearby villages, waterfalls and hillsides, a swimming pool and surroundings which draw serious numbers of butterflies which need to be watched as they go about their butterfly work. There are games such as scrabble, and puzzles. The food menu does not span a large number of pages, but the food is fresh, delicious and the vegetables grown in the organisc farm which is part of the project. Here there is no television, but there is a small library with books in a number of languages. Here there are no selfie sticks and gadgets are rare. People chat instead of gazing into smartphones while their thumbs do aerobics. In fact there is not even any wifi here so it is truly disconnected from the buzz of the outside and online world. And I find that enormously refreshing.
This is a truly tranquil space, and I occupy my time by walking, swimming (the temperatures are much warmer now and the water welcoming), photographing butterflies, reading and writing. I have especially been writing, and writing in such an inspiring place, where the distractions are mainly in the form of butterflies.
And that is where realise comes in. I have promised to myself that I will deliver on my main writing project by the end of the year. This is where I need courage because if I share here what my plan is, then I have an additional responsibility to make it real and deliver.
So here goes. Deep breath………
I have alluded in passing to my writing goal. Publication of Dragonfruit last year was a major life achievement for me, in having some of my writing appear in a proper book. This has pushed me to take this a stage further and produce a book with my name on the front and that is what I have been working on in the Laos hills, in tea shops in Yangon and green and inspiring spaces such as Bago.
Now I want to share a little more detail as the work takes shape.
There are two key aspects to this memoir. Firstly, insights and accounts of life and work in the 2009/10 Myanmar when none of us had any inkling of the changes ahead are told through my first year there and accounts of ways of life which have evaporated and disappeared. And of course, the diagnosis and treatment of breast cancer in this setting.
My aim is to produce a memoir of (a little over) my first year in Myanmar. It will span from June 2009 when we were waiting for our paperwork, through settling in Myanmar when things were very different, travelling extensively through the country in my first three months before being diagnosed with breast cancer. The work then charts the experience of single-breasted, bald, wheelchair-using, frequent flier commuting between Yangon and Bangkok for treatment, in an environment where I did not speak the language, and there were considerable practical, logistical and paperwork challenges. The memoir takes us through to November 2010 and my first visit to Bangkok following treatment which is not for medical reasons, as the world watches the Lady, Aung San Suu Kyi being released from house arrest following the first elections in two decades in Myanmar.
Back when I was diagnosed in October 2009, I don’t think that anyone had any idea of the changes ahead either personally or contextually. This is a combined account of a country facing unexpected and enormous change, and that of an individual woman facing an unexpected journey. In addition to sharing the detail of the disease and the treatment, this memoir will delve into the emotional and psychological facets of a cancer diagnosis and the unexpected elements – special friendships formed through a common cancer experience, the world of internet cancer and social media and its role in 21st century cancer yet in an environment which was closed and enigmatic to the outside world. A real example of tropical cancer, and in fact cancer in the unknown and mysterious Myanmar/Burma.
Living in Myanmar (Burma) and being treated in Bangkok provided a background ranging from the amusing – (such as trying to find a prosthesis when the market is focused on perky boobs which are perhaps more targeted for Thai Lady Boys, or a wig when the colour options are black or black making a chemo pale foreigner look like a Goth or aging rock star) – to the heart rending (being on the other side of the planet from family, the shock and disbelief upon hearing the cancer word), and to the bizarre (undergoing radiation therapy while Bangkok was on the international stage during the “Red Shirt” protests in May 2010) when Bangkok erupted in violence and flames which caused additional stress and uncertainty and added an unexpected perspective to those days.
I have a working title for the memoir, which needs a little refining before I can share, but here is a clue…
The commitment I have made to myself to realise, is to produce a draft manuscript for the end of the year. To be a maor step forward in making this real.
Just over a week ago, we celebrated the full moon festival of Tazaungmon in Myanmar. Throughout the wettest days of the monsoon, between the July and the October full moons of Waso and Thadingyut, there is a period which is often called “Buddhist Lent” in Myanmar. During this period, it is usual not to begin new ventures – not to start a new job or move house and not to get married. At the Thadingyut Full Moon (usually in October) there is a great sense of festivity and the city is bathed in lights and candles. The temples are packed and shops full of gift packs of monk robes and appropriate gifts. The night sky is punctuated with lanterns floating upwards.
The whole month following Thadindgyut has a festive air, and as the next full moon, Tazaungmon approaches we see preparations for this festival. At the end of our lane a stall appears, with wooden frames where people pin brand new 1000 Kyat notes and other donations.
At various times, these are wheeled around the lanes and streets. I looked up one Sunday morning when I heard some lively music blaring from a megaphone, and saw a line of money trees and umbrellas passing along above the hedge outside. Quite surreal.
This year Tazaungmon fell on a Thursday. Which brought the opportunity of taking a day’s leave on the Friday and making a long weekend of it. Rainy season is usually behind us by this time which makes flying less of an ordeal for me and I could feel a relaxing weekend at the beach calling to me. A booking was quickly made and I continued to work flat out, secure in the knowledge that a peaceful break was ahead.
However, rainy season had decided to continue a little mischief and on the Tuesday we had some torrential downpours. By Wednesday morning, there was no break in the rains and the sky heavy and grey. This was far more like a Scottish November day than a Myanmar one! I had to visit the Clinic for my regular blood check and the streets were again waterlogged. I was glad I was not flying that day and relieved that there were 24 hours before my flight.
When I returned from the clinic things took a turn for the unexpected and unwelcome. Firstly I received a text message alerting me that a friend was considering cancelling their seaside break due to a weather system developing in the Bay of Bengal. At almost the same time, I received an email alert about the possibility of a tropical storm or cyclone developing. My stomach flipped. Partly out of fear (flying in stormy weather, danger if the system were to develop and were to head in our direction) and partly from anger at the injustice of my badly needed break being in jeopardy.
I desperately tried to get any information and advice, but it was consistently inconsistent! The storm was expected to weaken, or strengthen. It might head towards Myanmar or it might decide to tootle off towards India. Some folks were cancelling and others were pushing ahead with plans. I was utterly incapacitated and had less than 24 hours to make a decision.
Now I am not the world’s most decisive person at the best of times, and in this instance I excelled myself. I did not want to make myself miserable and anxious by going ahead, but nor did I want to make myself miserable and resentful by cancelling. And the crystal ball continued to taunt me with its lack of information.
Hence, on the Thursday morning, with the torrential rain continued to batter down outside, and a sky promising plenty more, I was perched on the end of my bed only two hours from the flight’s departure. I had hardly slept, had not yet showered, breakfasted or even dressed and was still nowhere near making that decision. The fact that everywhere was closed for the holiday did not help, and the only information I could glean suggested that the while the storm was strengthening it was predicted to head westwards, India-bound. Ironically I had persuaded a friend to join me at the beach, and now the situation was reversed as she encouraged me not to cancel.
I had nothing to lose and no further information, so within half an hour had finished packing my little bag (no point in packing the sunscreen or sunhat though), showered, dressed, breakfasted and was putting my umbrella in my bag and throwing on my raincoat to head to the airport and see if the flights were running.
The streets were quieter than I had expected, in terms of traffic, apart from a few Tazaungmon trucks with Gangnam Style belting out from massive speakers draped with plastic sheeting and filled with young folks drenched and dancing, seemingly oblivious to the rains and their dripping clothing.
There was mayhem at the airport, the floors were slippery and there were crowds of people. I headed towards the check-in desk, pleading to the invisible that the flight would be cancelled. I had seen a forecast of rains and thunderstorms and hate flying in these conditions.
The fates had decided otherwise and when I approached the desk, I was asked where I was flying to. When I replied I was escorted immediately to the front and my bag taken to be weighed.
“But will the flight be all right?” I asked.
“Oh yes, it’s a new aircraft” was the reply.
“But the weather………”
“Fine in Thandwe. The bad weather is here in Yangon only”
And I realised I had a boarding card in my hand and my bag was being wheeled off on its own through security.
And so, it happened that I was on my way by default. The departures area was packed and many flights delayed, which did nothing to calm my agitated state. The ground staff from the airline I was travelling wore purple t-shirts so it was clear that one of the two flights they were running would be departing soon and sure enough, only a few minutes late, our flight was called. Getting up and moving to the departure gate reminded me of going to chemo. There was no way I wanted to be heading, but when bidden I would follow like a puppy. The rains were showing no sign of abating, and as the bus pulled up beside the aircraft we were met by a guard of honour formed by a line of airline-branded umbrellas. And then I was on the plane, questioning my lack of gall.
Take-off was predictably slithery but soon we were levelling off at 16,000 feet and travelling through a thick sky, surreally reminiscent of the frothy top of a cappuccino. Happily I had requested a direct flight (there is another long story in there – suffice to say that many flights in Myanmar fly on a kind of circular route and might have two or even three stops before you reach your destination). A forty minute flight with no extra landings and take-offs was about as much as I could handle.
As we descended into Thandwe, the light suddenly brightened in the cabin and I realised we were no longer in thick cloud. Vibrant green paddy fields, and thick jungle punctuated by winding brown rivers were immediately below and in minutes we were touching down on a dry runway.
The sky was still angry and the usually azure sea was more grey than usual, but I had arrived and if truth be told, the flight had actually been fine. I did not need to worry about flying again for three whole days, by which time the storm would have decided what it was doing and where it was heading.
As it turned out, the storm did form into a cyclone and turned towards India, but weakened and fortunately did not cause as much damage and harm as it might have. Although the Friday at the beach continued to be cloudy, Saturday saw a dramatic transformation to blue skies and continuous sunshine matched with the realisation that it is never wise to make a decision about what to pack without being that bit flexible. I am happy in the shade, but still it would have been wise to have had sunscreen, and throughout the whole break my raincoat stayed in the room! The rest of the break passed uneventfully, which was exactly what I had been seeking, quietly reading, people watching, walking and swimming.
It has been another week of packing, unpacking, checking in, checking out, locking and unlocking the little travel bag which drew such a short straw when it was selected by me, and flying through soupy clouds. I have been offline most of the past three days while participating in a conference in Bangkok. I am returning to Yangon with a head full of ideas, a file full of papers and a wallet bulging with visiting cards. I have connected and re-connected with like minds and am wrapped in a blanket of enthusiasm and motivation.
As I move along, feet hardly touching the ground I realise that it is many weeks since I have changed my background picture. That says such a great deal about how much the image from the Malaysian jungle resonated with me and how long I wanted to continue to soak in those healing images and memories. But now it is time for a change, and the image I am drawn to is one I took some time ago, in fact probably around the time that I attended the first conference on this topic, weeks after finishing my heavy treatment and when I connected with Kirsty for the first time.
I love wandering around downtown Yangon amidst the living heritage architecture. I remember seeing this building, where the Bombay Burma Press was housed and being fascinated by it and taking many photographs. It just has to be shared.
It is a glorious building and conveys the sentiment I want to share for the coming days and weeks as a background.
Welcome again to my world. 🙂
October on the breast cancer blogosphere has often been tense and as we step gently into November I feel a release of that tension. There has been much discussion about pink and whether pink and the pink ribbon are appropriate, exploitative and ineffective. A great deal of focus has been on moving conversations forward towards action and education and away from awareness. Awareness is yesterday. Awareness is unneeded. Awareness misses the point. Many bloggers who are usually very active and vocal took a recess during October. Others used the opportunity to shout. There has been a great deal of articulate, passionate and thought-provoking debate.
I struggle with these discussions. Not because I disagree with the concern that pink campaigns focus on profit and an unbalanced view of breast cancer. I find it completely inappropriate that certain products claim to support breast cancer initiatives and often a tiny proportion of the proceeds or profits is used for breast cancer work. Nor do I struggle because I find some campaigns distasteful – after all a certain shocking image even prompted me to leap off my comfortable fence and rant!
No, my issues with the feisty debate stems from the fact that I have a particular perspective on breast cancer, awareness and equity from my place on the planet. I see and hear, and try to understand, the significant different levels of awareness and the very different concerns which people have in my part of the world. I struggle with the fact that I had access to excellent care and treatment and a reasonable level of understanding of breast cancer yet a woman I might sit next to in the course of my life and work here has a very different level of awareness, considerable traditional taboos and for whom access to care and treatment is not easy. The discussions in the wider blogosphere are relevant and critical. But they often do not have relevance from where I am standing.
This is something which I have been struggling with since I stepped over the line in the sand into breast cancer world. Inequity in any form ruffles my feathers and my personal and professional life are driven by this passionate need to play even a tiny role to cause any tiny shift in this balance. But apart from the blog, it is difficult to see what I can really do in my neck of the woods. So recently, I learned of an initiative underway to bring women and men together, raise awareness and understanding about breast cancer and of course I leapt at the opportunity. There are a very small number of expat/international women I know here who have been through diagnosis and treatment and who are currently here so we came together to look at two things. Firstly, how we could support and contribute to the efforts of the local group, and secondly how we could connect as a small group ourselves.
We contacted the key folks involved in the initiative here and asked if we could support. We know that our understanding and experience is different, but we also know that we have all heard the same or similar words. We have all felt that fear when confronted with our mortality and the dread of aggressive, difficult treatments. As individuals, of course our experience is different but this is compounded considerably by our backgrounds.
So, it is complicated. What follows is my understanding and reflection, and I know it is more shallow and superficial than I would like. But it is a start in this broader attempt to convey just how different our cancer experiences are, yet how much we have in common. No matter where we are on the planet. And how critical it is to respect these, no matter how much or little we understand.
Our cultural reference points bring differing levels of understanding wherever we are. I quickly learned that it was even more complex and subtle here than I had imagined. Many people were hesitant or uncomfortable to talk openly about their cancer, or even to be identified as having been diagnosed. Gentle conversations gradually helped us, outsiders, to understand that there is a significant stigma associated with cancer. Belief grounded in karma means that a cancer diagnosis seems to bring with it a judgement that this is a punishment for a wrongdoing either earlier in this life or a previous one. There also are important issues over privacy and sharing private information, similar to the situation which Kirsty discussed in her post from Timor-Leste where the woman she spoke of was unable to raise her concerns with a doctor due to shyness.
So it has been a path which we have been treading along gingerly, trying to understand unspoken concerns and beliefs in solidarity.
Our initial aim has been to support the group in organising and promoting a Pink Ribbon Awareness Day which was being planned. And that is the event which was held last Saturday and which I promised to share details and reflections.
In preparation for the day a few women worked together to prepare a leaflet in Myanmar language, sound in information yet sensitive and appropriate to the context. We took care of the practical and logistical arrangements such as venue, refreshments, shade, seating and translation. We prepared for our own roles on the day and did our best to spread the word.
Although rainy season should be nearing its end our planning had an added edge with the promise of thunderstorms and the day did indeed start under a very moody sky.
The message which the group were anxious to convey was to dispel the utter fear of breast cancer which causes many not to seek medical advice. The message that a diagnosis of cancer is not necessarily a life sentence and that early detection is critical. I found myself struggling to a certain extent, knowing the importance of not reinforcing the belief that early detection guarantees that the cancer will be “cured”. But the discussions soon showed how complicated this is in the global context and the importance of that very early detection message here. For various reasons, potential breast cancer symptoms are often presented at an advanced stage when prognosis is much poorer. Generally, if detection were earlier here, then many lives would be saved. Many, many women and men do not know many of the symptoms of breast cancer. Many are afraid to know – treatment is not easily accessible or affordable. Many prefer to see if symptoms disappear on their own, and take traditional medication. By the time it is clear that the symptom is not going away, the disease could be much more advanced. Many are afraid of the treatment itself, or do not trust it and unsure of where to get reliable information. So it is complicated indeed.
The group decided to have a “programme” which would provide information, encouragement and the opportunity to ask questions as well as learning how to do a self examination in a private space after the main discussions. We provided a “goodie bag” with information leaflets and fans and ribbons were provided for each participant.
After a short introduction, a panel was introduced of four women who shared their experiences and answered questions put by a facilitator. The four women comprised two Myanmar women, one Australian and one Scot. It is probably not hard to guess who the Scot might have been!
We each described our own experience, focusing on how we felt when we discovered the sign that we might have cancer, what we did, what was our treatment and how did we cope. We were also asked to say how much we knew about cancer before our diagnosis. I was asked if I had had treatment options, and who decided what my treatment would be. We were also asked who broke the news to us that we had cancer – was it family or the doctor? It seemed that the Myanmar participants shared their concerns with friends or family some time before seeking medical help on their advice. One spoke of the difficulty in finding an oncologist and when she did, was not comfortable to share her concerns with a male doctor and it took further time to seek a female oncologist.
After we had spoken and answered individual questions, a gentleman sitting in the front row was invited to speak. We very quickly learned that he had been diagnosed with breast cancer and he shared his account with enormous openness and detail. He described finding blood on his shirt one day and when he sought medical advice, was highly surprised to find that this was breast cancer. From my place in the panel, I could not see him clearly, but there was no mistaking what was happening when he started to unbutton his shirt so that people could see his scar.
Following our own stories, there was the opportunity to ask questions. Pieces of paper had been distributed so that people could write their questions down and not feel embarrassed or shy in front of the large group. The panel was joined by one of the international doctors who gave up his Saturday afternoon to provide accurate and up to date information and answer questions from a medical perspective.
The questions themselves show how important the cultural context, the levels of understanding is and how different to many places. I share a few of the questions from memory:
• Are you more likely to have breast cancer if your breasts are very large or very small?
• What were your eating and sleeping habits before you had cancer?
• What is meant by stages and grades of cancer?
• Is it more likely to have cancer in the left than the right breast?
• What counselling support did you have to help you after diagnosis?
• How long does chemotherapy last and how much does it cost?
• What different treatments are there and how much do they cost?
• Are there options other than surgery for a tumour?
Thus, as the discussion ensued I realised that the messages of early detection and awareness of signs and symptoms are critical in this context as many women will seek support and information from friends and family long before consulting a doctor. Thus many present very late and prognosis is much poorer. It is so important to understand and respect the differing places we are all coming from.
I know that there is in many places pink and pink ribbon fatigue. I know that there are calls that the pink ribbon has outlived its use. It is evident that pinkness masks the ugly reality that is breast cancer. I understand these but from where I am I do believe that there is an important place for a unifying pink ribbon. It is sad that the ribbon has been abused and exploited in many places. It is critical to recognise and respect the reality that the pink ribbon excludes the most important group of the breast cancer community – those with metastatic cancer. But it is complicated. The organisers of the event on Saturday were more comfortable working on the symbolic pink by making ribbons, and setting up flowers and providing fans with a message of vigilance. They were far less comfortable sharing personal details or being identified as having been diagnosed. And as outsiders to the context, we must respect that.
Cancer cells do not care what our citizenship is, they are programmed to destroy. The major surgery often required to eradicate tumours is physically disfiguring on any body and psychologically destructive on any mind. Chemotherapy does not care if our hair is fair or dark, long or short, curly or straight, thick or fine – it will still fall as a result of many chemo regimes. Cancer is a psychological diagnosis as much as a physical one, no matter where on the planet we are.
And wherever or whoever we are we must respect and recognise how much we have in common and how much differs.
What an amazing world we live in, instantly connected around the globe through our little screens or devices. However, more than this, I am reminded of the amazing world which I am lucky enough to be part of. This weekend many people in Myanmar have been in festive mode with the Thadingyut Festival of Lights which is celebrated on the full moon of October. I have written about Thadingyut before – it is a very spiritual and beautiful festival.
I decided to head out in the early evening on Saturday, the full moon day and first day of Thadingyut, just as the light was fading. I wanted to wander around my neighbourhood with my new toy – a Nikon SLR which I hardly know how to work. This would be a bit of practice, but also a lovely way to start the evening and the opportunity to see the way the different houses and buildings were festooned in lights and candles to mark the festival.
And crowds gathering at the temples.
As I was walking down the road, watching my step carefully as this was where I fell badly earlier this year, I spotted something moving on the pavement. I could not see it clearly, but it looked like a very hair caterpillar and that called for some further investigation.
As I looked more closely and trained my lens on the critter, I realised that there was a highly interesting specimen in front of me. This was no ordinary caterpillar – this was a very shiny being, wearing a luminous green outfit and set in a body which seemed to impersonate pine foliage. It was the weirdest shape and did not look as if it belonged to the world we know.
I must have looked extremely odd, crouching over this beastie, taking photo after photo. People slowed down and I learned the Myanmar word for caterpillar and more importantly, that this little fellow bites! He was also camera shy and continued his trek across the pavement, ignoring the fact that his pic would later be shared on Facebook and generate a fair bit of interest.
It seems that he is some kind of banana tree resident and has quite a vicious sting with poison-tipped spikes. I have consulted Professor Google but not yet been able to conclusively give him an accurate label. I showed his picture to friends and colleagues here and it seems he is a fairly elusive chap too as no one had seen anything quite like him.
Despite his alien appearance he is very much of the world that I live in. What a reminder that we live in a fascinating and surprising world indeed. And this is yet another reminder that my own surroundings have a particularly exotic flavour.