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

Silence, a haircut and flowery shirts

I have been too quiet recently.  Silence usually means one thing in my world.  Worry. This week has seen the culmination of some full-on worry.  So I am very happy now to be able to provide an update. An update which does not contain bad news.

The key elements of the update are:

– A haircut.
– A Doctor in a flowery shirt, nay, an oncologist in a flowery Songkran shirt.  Because a Doc in a festive shirt can’t give bad news, can he?

Last year when I arrived in Bangkok Airport at the start of the Thai Songkran Water Festival, my passport was stamped by an immigration official wearing a flowery shirt.  That’s a first and I can tell you it made me smile.  All of the immigration officials were wearing flowery shirts and broad smiles. So a flowery shirt is a Good Thing. An oncologist in a flowery shirt is an unexpected thing. And indeed he cooperated by not giving bad news in his flowery shirt.

SongkranShirts
I still don’t now what is causing the spinal pain which has been troubling me recently, but a bone scan has ruled out metastasis to my bones.  Causes could be an old injury, calcium depletion (thanks to cancer meds) or old age.  Onc suggests old age.  I high five him.

Hence the hair cut. I never get my hair cut before hearing the NED words. NED – No Evidence of Disease. A haircut is an acceptance of NED. An acknowledgement that there is no imminence of nasty treatment.  Treatment which might cause hair loss.

As always, my preferred way of processing this mess that goes on emotionally is by writing it and there is a heap of blah coming in this space.  I have been scrawling in freehand in the waiting room, in my room at night and even in Starbucks after the injection of radioactive dye before the bone scan. Those scrawls capture what happens in a mind which does not know what the future holds.  They will be shared here very shortly.

But for now, there is no bad news. Just a very long overdue haircut and a Doctor in a flowery shirt and big smile.

Happy Songkran, Pi Mai and Thingyan Water Festivals to all.

Stargazing

I was on my home way last night from a regular supermarket trip, when I glanced out of the taxi window. My stomach turned over. There was a beautifully low lit half moon in the sky. Why did my stomach flip?  The previous evening when leaving the office, I had remarked to a colleague that the moon looked as if it was almost full. Yes, she replied, it would be full on April 4. eclipse 2The moon is important here, and we keep note of lunar phases.  Most festivals are based on the lunar calendar and we are in the final days of run up into the biggest festival here – Thingyan, famously known as the Water Festival. I was puzzling about the status of the moon and its relation to Thingyan when I saw the almost full moon on Friday and in my mind I thought meant that it would probably be New Moon for Myanmar New Year which falls immediately after Thingyan.

So I was more than a little freaked by the sight of a half moon last night. Firstly, I questioned whether the moon had indeed been almost full when I had remarked on it the previous evening. The conversation with my colleague was fresh and clear in my mind. I knew the moon had looked full.  Seeing something dramatically unexpected about the moon rocks our foundations and most basic beliefs and truths. My thoughts then moved to Murakami’s IQ84 where the parallel world had two moons. I did not want to take that train of thought any further and vowed to Google this weirdness as soon as I got home.

When I got out of the taxi, a couple of neighbours were lingering, chatting in the lane as happens most evenings. One pointed to the moon and showed me that he was taking a photograph on his phone. He knows that I am wont to take pictures of the moon and I thought he was suggesting I photograph it. I obligingly (I would have been doing this anyway) took out my camera and captured a few images, while staring at the moon and pondering the mystery of its sudden regression or progression to half moon status.  It was so clear in the sky and I could see the shadow of the other half of the moon quite clearly when realisation hit.  This was not a half moon shadow, because the moon had a “bite” out of it!  This was a lunar eclipse!

I watched as the shadow passed across the moon, the orange glow faded and the full moon I had sought appeared gradually again. I remember seeing pictures of the solar eclipse recently, and delighted for friends who had seen their first eclipse, posting their awe on Facebook.  This was not visible in South East Asia, but I admit to being secretly envious.  There was a total eclipse on my birthday in 2008 but I could hardly see it because of cloud cover as I waited patiently on the rooftop of the apartment block I lived in at the time in Colombo, Sri Lanka,, taking photographs of cloud and trying to convince myself that I could see a shadow. And apart from the tail end of a solar eclipse in Myanmar in 2010 which I could not really see properly I have never truly seen either a solar or lunar eclipse.

I was quite delighted to have seen my surprise lunar eclipse.  There had been no anticipation and with the lack of planning and expectation there could only be satisfaction. If we put this in perspective, this has more meaning than just a fifty-something woman seeing her first clear eclipse.  If you look at my wish bucket it is pretty clear that I have a fascination with the night sky.  I want to see the rings on Saturn, and I would dearly love to witness the Aurora Borealis or Northern Lights. I was fascinated by the night sky as a child and still love to gaze upwards in innocent wonder.  That is very clear too, in the second of my three words of the year too – breathe, stargaze and realise. How apt that just after writing about breathing a couple of weeks ago, and with a vague plan to write about stargazing next, that the planets should align to gift me a lunar eclipse!

eclipse 1

Watching the shadow slowly move to reveal the full moon again

As I approach my next round of medical checks with some questions which I expect to be explored, and as life continues to throw challenges in my direction this is a timely and keen reminder that I need to strive to stargaze and stretch my creativity. Life is less about what happens to us, but how we deal with what happens to us. I must remember to breathe, to stargaze and to realise.

Breathing in Bago

My three words are with me all of the time. They guide me and moreso, remind me why they are chosen.  It is not always easy to follow them and that reminds me that this is the very reason I need them.

Breathe ………..

Stargaze ………….

Realise ……………    they remind me.

Life continues to be intense here, the pace rapid and pressure too high.  “Breathe“, my mantra whispers to me.  “I know“, I reply to myself.  “I know.  I’m trying“.

My weekends have glimpses of rest and escape from the frenzy, but recently I found the weekends were increasingly squeezed and the weeks stretching.  Breathing was an effort.

Respite eventually came the first weekend of March with two public holidays – one on a Monday, another the Wednesday.  It was easy to take a leave day for the Tuesday and plan an retreat and space to breathe.

Energy levels were low, time was fairly short and the nervous investment as well as financial for flights to be kept at a minimum.  I decided to head out of town to Bago, a city just over an hour north of Yangon, and one which for a number of reasons I had never properly visited.

Bago is rich in temples and history.  From 1369–1539 it served as capital of the Mon Hanthawaddy Kingdom, which covered all of what is now Lower Myanmar.

I opted to stay out of town, in a tranquil haven with understated style and views across the plains. A small swimming pool and surrounds of trees, crowded with busy birds provided what I craved. The space to breathe, and gradually unwind.  I could feel tense muscles starting to relax and my thoughts begin to slow as I focused more on my surroundings and less on the mental baggage I was attempting to shed.

For two whole days I focused on breathing. I read. I swam. I wrote. I pondered.  I watched the colours of the sky change and the birds chit chat as they flitted from branch to branch and tree to tree.

Breathing

Breathing

As the hours of the third day moved forwards, I decided to venture into Bago City itself.  You can’t visit Bago and not soak in the atmosphere of the temples. The heat was already gone from the afternoon sun and soft golden rays reaching lazily across the landscape.  The perfect time to visit temples.

Impressive Shwe Maw Daw Temple is reminiscent of Shwe Dagon in Yangon.

Shwe Maw Daw Temple in the late afternoon sun

Shwe Maw Daw Temple in the late afternoon sun

bago 3

 

bago 4

bago 5

bago 6

A visit to the  famous python, said to be 123 years old and revered as a nat reincarnation is important.  Money is given and prayers chanted.  Happily the python seemed to bee sleepy, even if watching carefully.

he famous python, said to be 123 years old and revered as a nat reincarnation. Happily sleepy

he famous python, said to be 123 years old and revered as a nat reincarnation. Happily sleepy

bago 8

bago 9

A visit to Hintha Gon Temple was perfectly time as the sun was now orange, and throwing deep, soft beams into the corners of the temple and creating a glow in the sky.

bago 10

Steps into HIntha Gon Temple

Steps into HIntha Gon Temple

Looking over to Shwe Maw Daw as the light fades

Looking over to Shwe Maw Daw as the light fades

The view over to Shwe Maw Daw was breathtaking from Hintha Gon and I spent as long as I could, breathing and watching.

Shwe Maw Daw from Hintha Gon at sunset

Shwe Maw Daw from Hintha Gon at sunset

 

Sun streaming in HIntha Gon temple

Sun streaming in HIntha Gon temple

Setting sun through wooden carving - HIntha Gon

Setting sun through wooden carving – HIntha Gon

 

Sun setting through the wooden carving at Hintha Gon

Sun setting through the wooden carving at Hintha Gon

The light was slowly bleeding from the sky as I called in at the reclining Buddha before retuning to Bago under a night sky.

bago 17

bago 18

The following afternoon, after another evening of pondering and breathing, it was time to return to Yangon. I was refreshed and revitalised and more than ever bow to the importance of breathing.

I learned that B is for breathe. B is for Bago.

breathing in bago

Thank you, Bago, and for providing this space to breathe.