Swings and roundabouts

Do you remember those old-fashioned roundabouts which were in swing parks and playgrounds?  I remember that they were wooden usually, and set on a concrete patch in the middle of the grass.  We used to run round, pushing the roundabout, jumping on at the last minute when we could no longer keep up as it gathered speed.  It would fly around so fast we had no option to stay on it until it slowed down, amidst squeals of fear and exhilaration. I feel dizzy just remembering those playground days.

CHILDREN PLAYING IN PLAYGROUND - 1950SLife these days often feels like that speeding roundabout.  It tears round and round and we hold on, knuckles white, the momentum keeping it spinning. We cling on, knowing that it is going too fast for us to be able to get off. As the roundabout whizzes round, we catch sight of patches of life around us.  Tasks we need to do, people we want to speak to and spend time with, fun things we want to do………… Then they are gone, out of sight and too often out of mind as new matters catch our attention.

These past months, I feel as if I have been living on this speeding roundabout, dizzy and unable to focus on one spot as everything flies round around me.  No sooner do I catch sight of one important element than it disappears replaced by others, many others. Round and round it goes. Too fast to step off. Far too fast to clamber back on if I were to manage to disengage. Frightening and exhausting.

This is why I have been somewhat silent.  My mind is both empty and full.  Or perhaps rather it has just been simply that, I have been mentally, emotionally and physically overwhelmed.  How hard it is to find focus and clarity when I feel as if I am living in a moving abstract canvas.

Abstract - Mark Chadwick

Abstract – Mark Chadwick

But I have somehow stepped off the roundabout, while it continues to whirl around. I do not have either the energy or inclination to go anywhere near it right now.  I have also moved physically away so that it is not in my field of vision for the time being.  That helps enormously. There are still a few things reaching me, but with the merry-go-round at a distance, I feel a lessening of the nauseating dizziness.

Abstract - Andre Eleazer

Abstract – Andre Eleazer

I have spent the past days in Bangkok, in a beautiful, quiet space, even though there is turmoil not so far over the threshold.  Firstly I am just trying to still my mind and rest physically.

I have felt such a resistance to doing anything, even to planning the next days of my break when I will head out of Bangkok. I have been unable to write even a seasonal message to those who I have horribly neglected these past months.  I have not yet managed to get down those thoughts and reflections on the past year, one which has been one of the most difficult for many of us, that has taken people cruelly and relentlessly.  Those who we knew had limited precious time, and those who should have had a great deal longer.  These thoughts are still in my mind but not yet articulated nor shared with those who matter.

And then there is the writing backlog.  The blog space has been unusually quiet.  Not a shortage of ideas, but some inertia and muddle which needs calming time and gradual refocus.  Our Wednesday Writing Group writings have been neglected.  Work on my bigger writing projects has been put to the side. Having moved away from the speeding roundabout, I can pick up these remnants, strewn around and start to make sense of them again.

Soon I will physically remove myself even further, for a week or so. I also trust that the roundabout is actually going to slow a little over the next couple of weeks.  It won’t come to a complete standstill, but the more it slows down while I am on terra firma, the easier it will be when that time comes to try and leap back on.

While it is out of sight, I MUST try and erase it from my mind.  I must distance myself from its terrifying dizziness even though I know it is unavoidable, that I climb back on after my break.

But that is for later.  Right now, all that I need and want is that to provide a space for my body and soul to revitalise, refresh and attain optimum healing rest.

Pausing in an alley in Bangkok's Chinatown

Pausing in an alley in Bangkok’s Chinatown

Roundabouts can fun and exciting, but we cannot live on them all the time. In this fast modern world we live in, sometimes we just need to step aside and take the time to breathe.

After Words

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

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

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

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

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

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

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

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

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

It is what it is.

Sometimes even geckoes have to rant.

Image

All over the place

I am not sure where to start with this.  I am all over the place, and I have been all over the place.  And tomorrow I am going more all over the place.

My physical and mental beings are in limbo and transit all at once.  My mind feels as if it is the spin cycle of a washing machine.  Everything churning and spinning with no time to stop and reflect. No moment or opening to move forward.

I have just returned from a very short, intense and emotional visit to Scotland, with highs and lows.  Precious time with family, especially my father who continues to display incredible strength despite his frailty and years.  The sudden, cruel loss of my brother in law, stolen by a hiding cancer, believed to have been eradicated by the best of treatment completed only a few weeks ago. A long haul flight nursing a dramatically coloured and swollen leg, damaged thanks to pavement aerobics caused by an unfortunate combination of numb and clumsy Taxotere toes and a sneaky paving stone peeking up over its allocated territory. The rare gathering of close family over steaming mugs of tea and coffee and delicious comfort food. Hushed conversations. Rushed purchases. Heavy skies. Welcome laughter. Heart-wrenching smiles patchworked over wounds.

And as an unseasonal challenge Scotland organised blankets of snow over brave crocuses and daffodils as a  picturesque backdrop.

My return travel deposited me back in hot and sultry Yangon some 28 hours or so after I had left family in Scotland before sunrise in sub zero temperatures and into a sky full of snow waiting to fall.

Now, only a few days later, I am still not quite able to rest.  My half unpacked bag is now being re-packed ready for the short flight to Bangkok.  And the main reason for this unrest is the prospect of yet more checks. More blood draws from an arm so bruised I cannot see my own vein, scans to seek out anything which might be hiding and the usual investigation into anything which might hint at something sinister. I am exhausted with it all, yet I know it is what I need.  I know that without these checks, my mind darts into those dark, frightening places.  My Doctors and I are on the same page.  By the end of the week, I hope that I will be n the other side of this heaviness and limbo and able to move on in whatever direction that might be.  I know that my physical and emotional fatigue is colouring my spirit and mood.  I understand it. It just is what it is.

In all this turmoil and shift, this feels like the right time to change my background image.  While everything is so thrown up in the air, taking its own time for the different elements to drift back down and settle.

The sun sets on another workingn day at Yangon Central Railway station

This image speaks to me right now.  The sun is setting on a heavy day’s work in Yangon outside the Central Railway Station.  This woman is carrying her burden on her head, keeping her hands free and her posture proud. Her silhouette speaks of determination and strength, as it absorbs the soft rays of the sinking sun.

And of inspiration and clear direction.               In direct contrast to being all over the place.

Birth days and death days

 

Birthdays are a strange thing.  In our family we have a guarded attitude towards the special days because they are tinged with sadness and poignancy.

In 1998, my mother died on her 65th birthday. Every year I struggle to get through that day.  Then in 2007, my step-mother, with whom I was also very close, died. On her 75th birthday.   When birthdays approach in our family, we half joke (in that totally inappropriate way which Scots are rather good at) that we hope we get through the day.  Not so deep down, we are very nervous about our own and each others’ birthdays.

When I woke up yesterday, on my birthday, I was in a strange mood.  My recent unexpected health escapade meant that I cancelled my plan to celebrate my birthday somewhere new.  I would be spending my day in Yangon and it was impossible not to associate the day with the birthday I marked not long after arriving in Myanmar in 2009.  It was a Big Birthday – one ending with a zero, and due to paperwork difficulties we were not able to travel, so any wish bucket plans were not possible to realise.  Furthermore, being in the middle of rainy season it meant that travel anyway even nearby was not really a great idea.  So we marked the day in Yangon, visiting the beautiful Shwe Dagon temple in the daytime, and then with a small group of friends in the evening.

I was totally oblivious to the fact that I was nurturing two already significant tumours and was blissfully unaware of the turn life was going to take in a few short weeks.  Now, on my birthday, in addition to the association of birth days with death days, I have the added association of my 2009 birthday with Breast Cancer.  And that starts to explain my mood yesterday, when I found myself fighting back tears before I had even got out of bed.

However, I had decided to take a day’s leave and was determined to have a relaxing and indulgent day.  I opened up my constant companion (my laptop) in anticipation of birthday greetings through email and Facebook.  And it was wonderful – messages had arrived overnight, and more were streaming in from around the world.  There are some things which Facebook is very good at.

As I skimmed through my newsfeed, however, my eye caught an update which I struggled to understand initially.  Then the realisation sank in.  My blogging sister Jenny, author of Get out Gertrude, had passed away the previous evening.  We knew that time was limited for her, but as her family said in the notice it was far sooner than expected.  Those tears which had been on standby behind my eyes sprang into action.

Jenny and I had connected through our blogs and twitter interactions based on our (albeit different) breast cancer diagnoses.  Jenny had been diagnosed with Inflammatory Breast Cancer (IBC) which is notoriously aggressive and although Stage 4, she was leading a very full and meaningful life.  She was studying, blogging regularly and a tireless active advocate on IBC.  She tells the full story on her blog.  As the disease has progressed and treatment options limited, we knew that her time with us was limited.  But with regular activity online and her incisive and wise insights, the severity of her physical health was hidden behind a strong vibrant voice.  I will miss her enormously, but value how much I learned from her. Her post on talking to her youngest daughter, who has special needs, is one which will always stay with me and shows her strength, humanity, openness and selflessness.  The fact that she documented and shared this when time and energy were precious, and sadly limited, shows her generosity.

As I am based in Asia, and Jenny in New Zealand we are in a small number of bloggers/tweeters in this side of the planet.  So, for example, while the weekly #bcsm discussion would be underway on Monday evenings in the US, Jenny and I would be joining from Tuesday morning/lunchtime.  I think of us as the “Tuesday bloggers”.  Her passing on a Tuesday is strangely meaningful and comforting to me personally.

It was probably a good thing that I had decided to take the day of my birthday off work.  In my poignant and pensive frame of mind, I could focus on Jenny as well as the preoccupations which had already been crowding my thoughts.  So I moved back to my Facebook feed and the greetings, so that I could attempt to respond to each message individually.  When I was young I was always brought up to send a thank you note for presents and cards, and never seemed to quite finish the task.  So I have tried to redress the balance in this Facebook era.  As messages came through from different parts of the world, the phrase “many returns of the day” and its inference echoed round and round in my mind.  And then one message hit me with an almost physical force as it resonated so much with my emotional place.

“Happy Birthday! I’m so glad you are around for another one!!! :)”

And that was it in a nutshell.  When I found the lump in September 2009, I thought I would not be around for the forthcoming Christmas, never mind birthdays one, two or even three years hence.  None of us has any idea how many more “returns of the day” we will have, but to have three is something I am incredibly thankful for. My relationship with mortality has matured and changed beyond recognition and I do not take these “returns” for granted any more.

So, today is August 2nd.  And here’s another strange coincidence.  Today is Rachel’s birthday. Her close friend Sarah has shared a post which Rachel’s mother has written.  My fears and associations connected with my own birthday, Jenny’s passing and Rachel’s birthday are all joining together in an emotional whirlpool.

But mixed with that emotion is a sense of bittersweet gratitude.  It is the day after my birthday. and I am overwhelmingly thankful.  Thankful that I did indeed wake up today!  Thankful that there have been returns of the day which I feared there would not be.  I am thankful that I am most clearly around for another one!

And most of all, I am thankful for the rich friendship of very special women like Jenny and Rachel.

 

My first proper haircut since the Dr Evil days

The last time I had my hair cut, was in preparation to losing my locks after chemo 1, and a quick buzz with a razor in Scotland to even up the fluff which was sticking out above my ears.  I have been resisting getting my haircut, partly because it has taken so long to re-grow (it is six months since the last chemo) and partly because I want to see how these crazy curls turn out.  But over the past couple of weeks, I have been sprouting wings above my ears.  My hair is getting longer and the curls make my hair stick out untidily, bringing an unwelcome toilet brush look.  Added to that, the main colour which seems to be coming back now is darker brown.  So I decided to get a bit of a trim to get rid of the wings and the frosted silver topping.

I realise that the last time I had a proper haircut was over a year ago, and was actually quite an experience.  So much so, that in my previous life, I wrote about it on my earlier blog. This is my account of the experience then, last August.

31 August 2009

I didn’t think it would be such a big deal. After a couple of months here and a lot of putting off, I finally decided that I had to do something about my hair. Not difficult, you would think.

 

The first challenge came on Wednesday morning, sitting having breakfast, when I learned (the hard way) that it is not auspicious to wash your hair on a Wednesday here. Apparently I was setting myself up to get the burdens of the world on my shoulders. Definitely something to be avoided – but a bit too late, as I sat with my hair dripping!

 

I had a recollection from living in Mongolia that haircutting was inauspicious on either a Monday or Tuesday, so I began research on haircutting and washing issues here.

 

It is even more complicated. Certain days are good, bad or neutral for hair washing and a different set of days is auspicious or not for hair cutting.  So in order to identify when I could have a shampoo and cut, I had to develop a complicated matrix to guide my choice of day.

 

On Saturday I was finalising my research with the intent of getting my hair cut at long last. In summary, Wednesday is not good for hair washing, and Tuesday, Saturday and Sunday are good. Fine so far. For cutting – Monday and Friday are the bad days. So I confirmed with my source that Saturday is good so that I could go ahead with the cut? It was confirmed. Saturday is good. The days to be avoided are Monday and Friday – oh – and the day you are born. You’ve guessed it – I was born on a Saturday, so the day’s plan suddenly disintegrated. Even phoning for an appointment was sabotaged as a recorded message informed me that the selected hairdressing salon had not paid their phone bill and the phone was disconnected.

 

On Sunday I therefore embarked on phase 2 of Project Haircut. This involved a pleasant walk to the Hairdresser’s, making an appointment for a shampoo and cut for myself and a friend, and returning later.

 

Arriving later for the appointment, there were more surprises to come. For the shampooing, I was a bit alarmed to be led into a room with a couch (like a doctor’s examination room) where my friend was already tucked up – and lying having her hair washed! It felt, surreal, bizarre and slightly discomforting.

I was not prepared for the most amazing shampoo of my life. For the next hour I experienced an incredible hair wash and shampoo, which included head, neck and upper back massage – totally unexpected and completely relaxing.

 

I am never, ever going to put off getting my hair cut again. In fact, I am consulting my diary right now to see when it will be the next auspicious date for a hair wash!

 

The irony of the last sentence hit me full force when I re-read it today.  How on earth was I to know that it would be my last haircut for a very long time?  How could I possibly have known that my next actual cut would be to crop my hair ready for the shave?  How much I had taken for my hair for granted.

Last weekend, I fortunately remembered that a Saturday haircut was out of the question, since I am “Saturday-born”.  However, I am sure it is not inauspicious to book a haircut on a Saturday, so that is what I did.  I made an appointment with the same Salon where I had had the delicious shampooing experience over a year ago and basked in the anticipation of my first salon shampoo in such a long while.

On Sunday I was actually slightly nervous when I arrived at the Salon.  I was concerned that Twang Arm could get too much attention, and it is difficult to explain that gentle massage in certain areas of my shoulder and back is fine but other areas near the surgery and lymphatic area should be avoided.  But the overriding sense was one of eager anticipation.

I was not disappointed, and was led into the same dimly lit room with the same three couches with a sink at the head.  I settled down and let the hairdresser start the massage, after showing her the areas not to touch.

Again the shampoo massage lasted for around 45 minutes, which is quite impressive when you consider how little hair there is to shampoo!.  It included gentle upper back and shoulder massage and even a quick massage of my feet and legs (since I had asked for my arms not to be touched). I realised at one point that the water temperature seemed to be perfect, neither too hot nor cold.  I have so many recollections of shampooing experiences where I have leapt off the seat when scalded with water that is too hot, or trying to suppress an animal like roar when freezing cold water has hit my scalp, while being asked “is the temperature ok, madam?”.  Perhaps it is one of the benefits of living in a climate which is temperate and tropical and when we rarely need to use a heater for the water but it certainly adds to the comfort of the shampoo massage.

The other thing which I particularly like about the Myanmar style massage is that, for me, it is the right mix between firm and gentle.  Thai massages are definitely invigorating but often make me squeal and leave me bruised.  Gentle massage is definitely relaxing and pleasant, but the firmer massage does give the impression that it has been more beneficial.

So after the massage, I had to somehow stir myself from the blissed state I was in, and make my way back to the styling room.  The hairdresser may have been surprised that I was having a cut, since my hair was so short, but she did nothing to express that surprise, for which I was thankful.

 

There was a bit of confusion about the cut I wanted, but that is not surprising given my odd instructions.  “Clip my wings, take away the silvery topping but leave it as long as you can”!!

The result was fine, even though I realised I had been secretly hoping that it would bring a transformation to my pre- Dr Evil days.  My hair looked darker without the silvery bits, although still a bit too grey for my liking.  It was much tidier and looks almost like a hairstyle, rather than re-growth after baldness.  Or perhaps that is wishful thinking.

I have decided that I will delay on attempting to colour it at all.  There are two reasons for this.  Firstly, it is still extremely short and if coloured would quickly develop two tones as the new hair (hopefully) continues to grow and lengthen.  The second reason is a bit more sobering.  My Big Check is next month and the fear of discovering that some nasty cells or worse have survived or developed despite all the treatment is at the forefront of my mind.  Being blunt, there is no point in colouring my hair if I had to have chemo again and lose it all over again.  And it would be a waste of money (the shrewd Scottish perspective). If, however, the Big Check goes well and I am released back into real life until the following check, then I reckon that will be a very good time to hide the grey bits.

Now that was a very long story for a very short hair cut, and a reminder of how the most mundane things that we have taken for granted take on a very different meaning!

The guilt factor

Once that diagnosis touches you, every headline and news article about breast cancer is more immediate and poignant.  I was saddened to learn that Martina Navratilova has been diagnosed with breast cancer, and at the same time fascinated at how the news is used to convey different messages.

There is plenty of detail available about her diagnosis, and her very optimistic prognosis.  My interest is more in some of the underlying issues which a higher profile diagnosis brings to the surface.

The frankness and openness which Martina has displayed are very welcome, particularly when she talks about missing screening mammograms.  She was also very frank in her surprise at her diagnosis, because of her very fit and healthy lifestyle and was quoted saying  “I’m this healthy person, I’ve been healthy all my life, and all of a sudden I have cancer. Are you kidding me?”

This brings forward a whole discussion about the role we all play in our own cancer, or even more so, what we feel we could and should have done differently.  A wealth of information and research is available of how to prevent or decrease our risk factors and reduce our probability of getting cancer.  Healthy lifestyle, exercise and diet all clearly play a role in reducing the probability of getting cancer.  The difficulty with this is that it increases our feeling of guilt and responsibility of contributing to or causing our own cancer when we are diagnosed.  As soon as you get that diagnosis, you seek to understand why and we are too often quick to blame ourselves.  Guilt comes easily when we think of things we could have done differently.

I think I am a fairly well informed individual, yet I was unaware of some of the risk factors of breast cancer.  And my risk factors were mixed to low.  Furthermore, there are probably as many factors out of our control as well as within our control.  It is highly unlikely that we would know for sure what has been the cause or main causes of our own illness.

I feel that we have enough to deal with in our diagnosis, in the heavy treatment path and all it includes and in being faced abruptly with our mortality.  Of course there are lifestyle changes we can and probably have made, following our diagnosis.  But how do we make ourselves feel less guilty and as if we have brought this on ourselves?

On the move again

We are on the go again – and hopefully will reach home this afternoon.

I am pretty whacked still after chemo 5, but keen to get back to the garden, home, friends, gentle engagement with work, fresh food and lots of swimming.  All with a view to getting my strength up again for another zap in a couple of week’s time.

It may be that connectivity is limited – but I shall update however I can.