Precarious

While the intensity of the past months continues, so to does the cycle of life. Weeks ago we were complaining of the oppressive heat and praying for rain.

This year rainy season was hesitant, somewhat reticent in its arrival. Last year the rains arrived in the early afternoon of May 9th, and the season switched decisively. Dry season and blue skies were replaced instantly by grey and black clouds and torrential downpours. This year, in late April we had three days of rain, and sighed relief. Yes the rains are here, thank goodness. Then the skies cleared again, and the temperatures and tempers would rise dramatically. Where had rainy season gone? A week or so later, more grey clouds would sweep in, and more torrents of rain would fall, to be replaced once more by teasing blue skies. This happened on a loop, on a repeat mode. Rain, pause, sun, pause, rain, repeat……

There was no decisive start to rainy season this year, instead the blue sky pauses became shorter and the rainy interludes longer. Until we realised that the rainy season had indeed arrived, through some back door rather than with its usual flamboyant entrance.

There is one sure signal of rainy season, however. That is seen particularly in the fattening of jackfruit on the trees. Jackfruit and their cousins, durian.

jackfruit 1

Jackfruit appearing

These are fruits I had never heard of before I arrived in Asia, and my first introduction to the durian was through its reputation rather than its taste. On my first visit to Thailand over a decade ago, I was puzzled by signs in hotels and other public places that durian were banned. What kind of fruit is banned from hotels and buses? It turns out that it is a very stinky fruit which is banned. Durian and jackfruit have a pungent smell, which seems to linger for months, long after its taste has been relished. It is enormously popular, in fact I have yet to meet anyone from here who does not break into a wide grin when there is talk of jackfruit and durian.

BKK Durian

Durian for sale in Bangkok

Jackfruit is especially prolific in Myanmar. At this time of year, there are jackfruit stalls on every corner, and jackfruit sellers at the traffic lights. Jackfruit are created with single portion size pockets contained within their skin and already packaged ready for sale as soon as the thick skin is split open and the perfect little portions are extracted.

Every year, I am surprised at the appearance of the jackfruit as rainy season approaches. I never notice them when they are small, orange or grapefruit sized. I only begin to spot them on the trees once they are bigger than your average watermelon. Then I see them everywhere, as they continue to swell and grow. According to Professor Wikipedia, the Jackfruit is the largest tree-borne fruit in the world. Its weight can range from 10 lbs to over 100 lbs. (5 kg upwards roughly).

What astounds me most of all though is that these massive fruit are delicately attached to the tree by a thin spindly stalk, as is the durian.

jackfruit 2

It looks incredibly precarious, but I have yet to see a jackfruit lying damaged on the ground, having fallen from its stalk. These stalks might look fragile and weak, but there is a strength within them which belies their appearance.

Life is precarious and uncertain. We are thrown curve balls when least expecting them. We feel fragile and unable to hold on to our burdens. Yet somehow we find the strength. Mostly.

A number of people dear to me are going through tough times. The air feels as if it is thick with curve balls. May we all find inner strength to hold on and move forwards, despite how weak and fragile we feel and how enormous the burden.

Deeply personal

I have no wish to add to the commentary on the disaster in Nepal caused by a major earthquake yesterday, and followed by numerous aftershocks and at least two other significant quakes of well over 6 magnitude on the Richter Scale.

There is a wealth of information, distressing and tragic images and news updates as casualty figures rise. It is an overwhelming tragedy and the coming days critical as a picture emerges of the extent of the situation, including the remoter areas nearer the epicentre. Information is aplenty and I do not plan to add to it.

My words are about how deeply personal this tragedy is, and that is for me at a distance, physically removed from the situation. However, I am strongly connected having lived in Nepal for approaching six years. Nepal, and especially Kathmandu hold a very precious place in my heart. I am struggling to process this.

This earthquake is not unexpected. We have long known that a major earthquake is due, or even overdue. Nepal sits on a highly seismic line, which give us the spectacular Himalayas as a result of the tectonic plates shifting through history. We have long feared an earthquake of this scale but we have always hoped that it would not happen.

When I first arrived in Kathmandu in July 2000, fresh off an overnight flight from Scotland, to take up a new job in a country I had never been to, I was spellbound by the city. But even in my first few days, I started hearing about “the earthquake”. I quickly learned that Nepal is highly vulnerable, and that Kathmandu particularly was in a highly precarious position. The population density, fragility of many buildings and concentrated construction on top of a ground which used to be the floor of a lake and now prone to liquefaction all being factors which would intensify the impact of an earthquake. I soon became very aware of earthquake risk, but did not know what to do in the event of a tremor. I did not have to wait long before I was pushed into action. The deep Gujurat earthquake in January 2001 caused swaying of buildings and dizziness in beings even as far as Nepal. Not long after, in July we had a rattling 5.9 earthquake while I was lying in my bed dozing off one Monday night. As the shaking intensified, I realised I had no clue what to do and I was lying there thinking”what-do-I-do-I-need-to-shelter-in-a-doorway-or-is-it-under-the-bed-or-should-I-run-outside?” when I realised that the shaking had stopped. Nothing had been damaged, but there were shouts of “bhuichalo” (earthquake in Nepali) outside, dogs were frantic, people gathering outside and I settled on my rooftop balcony feeling safer on top of a building than in it, and unwilling go to back to bed in case a bigger one came.

That night there was no further seismic action, nor was there much sleep. My paralysis when the earthquake started galvanised me to learn more and without doubt prepared me for future earthquake experiences, and in particular the 2004 quake which caused the massive tsunami. We were in Port Blair in the Andaman Islands on that day and returned to Kathmandu a few days later, with an intensified dread of the anticipated “big one” which we knew was already overdue.

There have been a number of deadly quakes in Nepal in recent decades, but the last massive one was in 1934 measuring 8.4. Seismology experts have calculated that a quake above 7 on the Richter scale is likely every 60 – 80 years. Hence the sense that a “big one” was overdue or imminent. Returning from a major earthquake, into a vulnerable area caused incredible stress. This was not an irrational fear, but a very real likelihood. We just had no idea when it might happen. We developed a plan of action for when such an earthquake came including a rendez vous point and communication back up. One particular friend and I worked through which supplies to hold, and which necessities to stock and a plan of action.  When she visited me in Yangon, she told me how that had now become a plan which she had jointly developed with a small number of friends in Kathmandu. They would join forces, each with different supplies if needed.

We left Nepal in November 2005, and a major reason was the vulnerability to earthquake. We had moved house to a safer place, but still felt that the risk was high and when the opportunity arose for work in Mongolia this was welcome. But I am still highly aware, and have written of earthquakes and mentioned more than once, that one of the reasons we are so taken with our home here is because it is small and likely to be safer in the event of a quake.

I was in a car heading home yesterday lunchtime, when hubby phoned and broke the news of the earthquake. As soon as I got home, I spent most of my time checking up online, seeking news of family and friends in the affected area. Having lived there for so long, and with family across the whole affected region, it was an overwhelming task trying to seek reassurance about so many people. There were so many updates from friends, family and former colleagues all over the world, desperately looking for information and sharing any updates they found. Thank heavens for social media. Although phone lines were mostly down, internet was more functional and soon messages came through from those who were safe and knew of others on Twitter and Facebook. In no time, #nepal and #earthquake were trending on Twitter. This morning we continued to receive news that loved ones are mostly unhurt. After the initial relief, we realise that many are homeless. Most spent the night outside, either under tents or on the roadside either because homes are destroyed or unsafe, or due to fear because of the aftershocks.

A great deal has been done in terms of preparedness in recent years, but the geography of the Kathmandu valley and population density are fundamental features which intensify the impact of the earthquake.  Hospital patients are being treated outside as there is no more space inside. Water and food will urgently become limited. One piece of welcome information was that although Kathmandu airport was closed to regular traffic, it was still able to function and late last night the first relief supplies arrived from India. The national and international communities have mobilised and a humanitarian effort underway with emergency coordination mechanisms already activated. A State of Emergency has been declared.

However, we still do not know the scale of the situation. The coming days are indeed critical, particularly given the strength and number of aftershocks on the weakened and fragile structures. Gradually we are learning more, and each new piece of information cuts deeper.

While I am protected from the immediacy of this catastrophe being at a distance, I cannot say that I am not affected.  This post is a personal, selfish catharsis from an individual trying to process and deal with the scale of this disaster. It is deeply personal.

We are holding the people of this Himalayan region close in our hearts at this time and holding out hope for a rapid, effective response reaching and treating casualties quickly and for a strong recovery.

Namaste.

Realise – a review and a commitment

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.

LP April 1

The perfect creative space.

LP April 2

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.

LP April 3

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…

LP butterflies 1

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. 

LP butterflies 2The Laos hills and their butterflies have provided a particularly inspirational space to take this forward considerably away from the distractions of the outside world.

Part 3 or so. The Long Wait (continues), over-thinking and onwards

The Long Wait continued….. my thoughts on Thursday 9 April – afternoon….

After the scan – Over-thinking. Or interpreting?

So now I am over-thinking it all. And what’s worse – I knew I would.

The beeps. First of all, those electronic “beep” noises during the scan. The noise just like the one that sounds when an electronic message has arrived in my inbox. I don’t remember hearing beeps last time I had a bone scan. My overdriven mind says it’s an “oh here’s some cancer” alert. It’s far more likely that it is a tone to note the end of that bit of scanning. Try telling my mind that though.

Then the real over-thinker material, which comes as the scan comes to an end. The Doctor asks when I will see my referring Doctor at Samitivej. ALARM BELLS!! I reply, tomorrow or maybe today as I think he consults on a Thursday too. She says she will send the report over. Unless I want to take it with me, she asks”? I rewind back 2 years but with a tweak. Oh heavens no, I think. That would be agony, and I would be sure to open it eventually. Or much sooner. “If you give it to me I will read it”, I reply, and I think I add “and that might not be a good idea. It’s fine to send it over”. She says it will go over, but may take a little time. I must have displayed my fear. She added that it would take 2 – 3 hours after the results come back.

So this time, I do not have the report to look at in the waiting room, and do not wait for it. I do not have reassurance. Nor have I had to read bad news myself. In that open, waiting space where I feel so vulnerable and visible.

The tears came though, not in the waiting room this time. Firstly they came in the taxi, while the driver chatted on about water festival and traffic, seemingly oblivious to my minor meltdown. They came again in the lift as I headed up to my hotel room, and again on the phone. Tears of pressure and fear. I know I am over-thinking. I also know that I am steeling myself, based on the lack of reassurance immediately after the scan. I am sure that they had told me last time back in October 2012, even before I left the scanning bunker, to wait for the report last time, when the technician brought the report to me and I said that I was frightened. She said, then “it’s ok. You can read it”. She obviously couldn’t tell me outright but she nonetheless reassured me. That didn’t happen this time in the 2015 re-run. It could be because of what the scan images say,  and that there is a problem. Or it could simply be that this is another Doctor who has a different way of working.

As I left the bunker, I looked over at the screen and the Doctor concentrating on the skeleton on the screen. I know that I am totally unequipped to interpret or understand anything, but am still ready to put my own interpretation to the picture. From the quick glace I could see a bigger area highlighted. Perhaps my full bladder? Perhaps something worrying at the base of my spine. Right where the pain is.

I walked out of the bunker.

I wonder whether I will get a phone call this afternoon or evening if there is unwelcome news, but in any case I know that in 24 hours or so I will know.

Right now, I am steeling myself for the worst. I feel that there are too many clues which are worrying and not enough reassuring signs.

But then again. Maybe I am just over-thinking again.

 

Friday 10 April, early morning

When I woke up on Friday morning, I forgot briefly that I was still “waiting”. Just for a second or so, but long enough for a cloak of confusion and darkness to descend.

The morning was long. I arrived in good time at Counter 2 and walked over to get my blood draw.  Straight past friends I know well from Yangon. It is not easy to miss a family of 4, all of whom you know, but that says quite a bit about my state of mind.

And was I glad to hear those reassuring words from Dr W2 in his happy, flowery Songkran shirt. Glad, exhausted and at last I could stop thinking

Water vessels are being filled as I write this, preparations for the various Water Festivals and New Yearin the region.  And I am retreating to be quietly thankful in a quiet healing place. Hiding from watery mayhem as I tend to do. Offline.

I will be back in a few days, but for now I am stepping away from the intensity of the past weeks.

LPQ2

Wishing all a refreshing Water Festival if you celebrate, and New Year of hope, health and happiness.

When I return to the online world, I plan to share some thoughts around my third word of 2015. Realise…. If I am brave, I will have some news to share.

Part 2 of the Long Wait

Thursday 9 April, 08.15 am.  Wattanosooth Cancer Centre, Bangkok Hospital

This is the second part of my blah.  I had just had the radioactive dye injected into my bloodstream and had 2 hours to wait for the scan.  I found a quiet space in Starbucks and started to write……..

Between the dye injection and the scan…

Here I am again. Mind racing. Heart racing. Blood pressure sky high, and that is according to the number on the “vitals” check rather than my own assessment. And radioactive dye seeping through my body, finding its way into my bloodstream, bones and, according to the information sheet, my urine. Nice.

I have to drink at least a litre of water, urinate as often as possible. And get this? (Sorry if this feels like too much information, but in cancerland there’s no such thing as too much information} – when I go to the bathroom I must use toilet tissue and not the water hose which is the norm in this part of the world. Apparently that could interfere with the reading.

Here I am again. A Bangkok Hospital wristband with my name, hospital reference, age in years, months and days and the date of “admission”.

Here I am again. In Starbucks. Downing gallons of water and drinking a bucket of Earl Grey tea, according to the instructions. And writing. Again writing. Just like I was in October 2012. Trying to process the extremes of thoughts in my mind, yet with that exhausted, fatigued sense of “whatever”. Yeah, whatever. Or whatever happens. Whatever, anyway. I am almost past caring, I want to know what is causing the pain. Yet I want to know it isn’t cancer. But even if it is, I want and need to know. It is the not knowing that is so exhausting.

This just doesn’t get any easier, for me at any rate. Five and a half years ago I was diagnosed. Almost exactly five years ago I had my eighth cycle of chemotherapy and was preparing for radiotherapy. That radiotherapy took place, here in this hospital in the bunker I walked past to change into today’s inauspicious peach coloured hospital gown. Then two and a half years later in October 2012, I was back (not counting a few 6 monthly checks with the radiology oncologist which were more of a social chit chat). I had found myself here after Dr Wirote expressed concern at raised tumour markers. That had been totally unexpected. Utterly out of the blue. Back in October 2012, he’d sent me for a CT scan, my most hated procedure in terms of diagnostics, and a bone scan. The CT scan was a familiar horror. The bone scan was an unknown terror. At my request, Dr Wirote packed me off to these procedures tightly clutching a pack of 10 Xanax. I had swallowed one before the dreaded CT, another that night to help me sleep, and another the following morning to see me through the unknown and uncharted territory that was a bone scan.

I was “pleasantly” (if you could go so far as to say that) surprised that the radioactive dye injection for the bone scan was way easier than the CT. No IV line in the hand, or instructions to hold your breath while you just wait for the electronic voice that tells you they are about to inject the dye. No rush of heat, no sensation of bladder release, dizziness sweeping over you. It does not last long but it is long enough. No electronic voice telling you to breathe in, hold your breath, breathe out, don’t move. Yuck I hate the CT contrast dye and was enormously relieved that the bone scan dye is so much gentler in comparison.

Or maybe that experience was aided by the 3 Xanax in 2 days in a body that is not familiar to Xanax. Whatever it was, with the dye injected, 2 hours before the scan and a dye with no reactive sensations, all there is to do, is lie there the whole time while the scanner does its work. It is a bit like a massage without the massage, if that makes any sense. Maybe that was the Xanax.

So I am pretty chilled about the scan this time, although have still taken half a happy pill just in case there are any surprises in the procedure.

If I am chilled about the scan, what about the results? Now that is a different story altogether. This time there is a symptom which needs to be checked out. The spinal pain. My mind is doing what it did when I first found the lump in my breast. I veer from “it’ll be fine. Plenty of possible causes – old compression fracture, that fall from a horse in Mongolia which landed me right on the base of my spine, calcium depletion from Femara……” oh yes, plenty of possibilities. To the other extreme “shit. It is cancer in my spine”. There is a real possibility of that. And from there I enter a new and unwanted space.

And that is where I need to stop thinking, but also why this is such an excruciating space to be in.

home sweet home 3

I just want to know. I need to know.

The back story.

My usual round of checks took place on Tuesday (7 April). As usual, I turned up for the blood draw, the appointment with the Endocrinologist, Oncologist and Surgeon.  But this time, I also had to report some spinal pain.  I have pain when sitting, and especially when standing up from a sitting position.  I knew I had to report this.  I knew it could be worrying.

The bloodwork was mostly fine. Cholestorol stable, sugar still slowly rising, tumour markers stable, INR a little high. Mr W2 was concerned about the spinal pain though. He has always checked in on any bone pain as my type of cancer can metastasize to the bones. Thus he likes to keep a weather eye on bone stuff.

So, unsurprisingly, on Tuesday he referred me for a bone scan.

That is where the mind takes over and I find myself in a difficult place to navigate.  And so I resort to writing it out.  I write to “download” what is going on in my head.  Not quite to make sense of it, as that is not possible. It is what it is.  It is not about comprehending what is going on in my mind, but about trying to release it from inside my head and draw off some of the pressure. I find that it also captures those thoughts and fears when I am in that space.  Once results are in everything changes, and although I can remember what I felt, the territory has changed.  Irrespective of the results.  It is that space of the “unknown” which is the most difficult, in my view.  Not knowing is excruciating.

I only had 4 days of not knowing, but it feels like an eternity.  In the next couple of posts, I share what I wrote while in that space.  Firstly, I am sharing what I wrote on the evening of the checks, once I returned to my hotel room after seeing each of the Doctors, with a wait ahead for the bone scan, and then the results.

This, I guess, is Part One of the story.  And a spoiler alert – you already know what happens, and that there is no bad news.  But when I wrote this, I had no idea what was ahead.

Tuesday 7 April

8.15 pm

What do you call it when you are so exhausted, stressed, worried, scared that a contradictory calm descends? When you are “beyond” the familiar heightened, palpable stressedness, that peak of anxiety? When all you can feel is a sense of resignation. A space far beyond the spectrum which spans optimism and pessimism. Or hope and despair. I have no idea what it might be called. I just know that is where I am.

I just want to know.

Is this back, lower spinal pain sinister or not? Is it caused by calcium depletion? Is it connected to spinal injury from years ago?

Or is it cancer in my bones?

I just want to know.

I am beyond fear, beyond anxiety and even beyond worry.

I just want to know.

I feel fragile yet strong. Out of the eye of the public, unprotected by privacy, the tears are too near the surface. I blink them away, force my thoughts elsewhere and remove myself to space when I can release, give in to this uncertainty and simply let those tears fall. But when I am alone, unwatched, the tears retreat stubbornly, as if I must keep my composure. Until I know.

I just want to know.

And soon I will know. Only three more days or so. In some ways it stretches, impossibly ahead. Yet in other ways, it is so close I can feel no anxiety about the wait. The wait, the results. Both are bound together. Inseparable.

I just want to know.

In the past I have found myself clinging to the waiting time, knowing that it might be the last days and hours of innocence before test results change life and move me into an unwanted space. Again.

It is different this time. The agony of not knowing is more powerful than the fear of knowing “the worst”. No matter what is ahead, I am simply beyond it.

I just want to know.

I

need

to know.

Backyard butterfly