Always on my mind

This blog started life very much as a breast cancer blog, in its own discrete space.  Gradually it has morphed into a “life and work in Asia with the cancer thing thrown in” blog with more talk about life and moments here than previously.  I realise that the past few posts have in fact contained “no talk about cancer” since the last round of checks in late March.  And that has to be a good thing.  It shows that cancer has a space in my life (unwanted obviously) but that it is not “my life”.  Life on the blog has been about Water Festival, changing seasons and the very exciting Dragonfruit news. But that does not mean that cancer is not in my mind and recently I read an article which really resonated.

The writer articulates how she thinks of cancer every day, more than three years since diagnosis. It is a wonderfully balanced article and sets out the ways in which cancer filters through, and not necessarily in a “gloom and doom” way. And that is why it resonated so clearly with me. If we think about cancer, it is not necessarily about fear but it is also about change, adjustment and loss. But there is a perception that to think of cancer frequently is unhealthy and negative and I realise that it is important to emphasise that is not necessarily so.

Similarly to the writer, I am reminded of cancer as soon as I wake. Firstly I lean over to take my synthetic thyroid before I get up to go and put on my swimsuit, stuffing my prosthesis in the left side. That’s my routine. I am not filled with fear or grief, but it is a nuisance and uncomfortable. How can I not be reminded of cancer? Even the act of swimming and cycling in the morning is motivated by the knowledge that I improve my odds with regular exercise. So before I start my day, there are Big Cancer Reminders right in front of my nose.

Cancer is somewhere in my mind when I make plans, particularly holidays or visits. I find it extremely difficult to commit to anything around the time of the six monthly checks and once I pass those milestones, my diary and planner suddenly spring to life. I was diagnosed in 2009 and dates far into the future felt beyond my own lifetime. I didn’t even realise that I thought to myself “well, I probably won’t be here to see that” when the announcement came that Rio would host the 2016 Olympics. But I did, with a pang of something akin to mild regret. By some cruel quirk of fate, that announcement was made the very day I met my surgeon for the first time and he told me that the masses were highly suspicious of cancer. Now as time moves on, even the Tokyo 2020 Olympics do not feel quite so unreachable.  Yet still I take nothing for granted. There are a lot of milestones on the cancer side of things, never mind other ways that I can be felled.

I am reminded of cancer as I walk gingerly, picking my way carefully with toes awkward due to residual neuropathy. Perhaps it is not cancer as such on my mind, but there is a firm link to chemo after effects and everyday mobility.

I am reminded of cancer as I prepare my weekly cocktail of medications, counting the days and making sure that the alternate doses of warfarin, 5 mg one day, 6 mg the next, are correctly calculated, looking at those innocent little Femara pills, which are so costly and which cause so many unpleasant side effects. It’s not being negative. It just is what it is.

I am even reminded of cancer when I reach into the kitchen cupboard for a tea cup and have to use my right arm because Twang Arm can only get there if I am on my tiptoes.

In fact I cannot count all of the reminders, and I do not need to. It is clear that the invasive nature of surgery, effects of treatment past and present, never mind the risk of recurrence, all contribute to visible and less visible reminders. The critical thing is to manage these and adjust. And for it to be understood that I am not being negative or tempting fate. My thoughts are valid and my fears, when they come, are valid too. And sometimes I am just really grumpy that I have to wear a prosthesis at all, fed up that it irritates my skin in a way that a natural breast never does and I just want to toss the wretched thing into the bin. Or I am frustrated that I always have to wear a high neck camisole vest to hide the scars. Everywhere I turn, it is staring me in the face.

Yes, the reminders are many and varied and essentially constant. How can cancer not be on my mind daily? But that does not mean I cannot and do not dream of being an old woman who wears purple! I have every intention of being that woman!

yangon rainy season 2

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Waves

It’s a strange thing, grief.  We think of it as a process which moves in a linear way.  We think we are making progress forwards.  And then there is a moment, a memory, a scent, or piece of music.  Even the sight of a familiar food, and we are again ambushed by a wave of grief, washing over us.

Today, by some unseen alignment, two different posts arrived in my feed, both about grief and loss.  And at a time when there are seasonal prompts and reminders of my own grief. The birthday my father would have celebrated earlier this month.  The season reminding me that this time last year I made the sudden decision to return to Scotland to spend final days with my father.

Marie writes in her post, Still alive in a wound still fresh, about those unexpected moments when we see or read something which speaks to us with a strength which takes our breath away.  The other post I read today, beautifully titled Live forever, provides a privileged insight into the influences and memories of a mother and grandfather:

Two people who live forever in my heart had birthdays last week, my Grandfather and my Mother. Both were very dear to me during the time we shared and both continue to play a role in my life. They’re in my thoughts, my memories, my sense of who I am and how I want to lead my life

This resonates too with my own processing and coming to terms with that strangeness of grief.  I wrote last year that grief is within us, not without.  And that means that the love and memory for those we have lost lives on within us, along with the values and influences which shape and guide us.

Signs of spring - Lismore

Signs of spring – Lismore

The wound is indeed still fresh, our hearts still grieve.  Yet there is a gold nugget of life, that which lives on within us and which we must hold on to and cherish.

Within. Without.

As I was walking down our lane the other evening, I spotted several fireflies darting about.  One of those little moments, when the ordinary is exquisite, I immediately stored the sight mentally, adding it to a little list I keep. This is the list of snippets and experiences I keep, to share with my father when I phone or see him. It must have been no more than a nanosecond before I of course remembered that I would no longer have the opportunity to share these little moments. I was almost physically winded by the thud of realisation.

I had thought when I returned to Yangon that perhaps grief might be a little kinder given that I am not surrounded by daily reminders of my father.  I am not living in the same physical space and  do not have those shared routines constantly prompting and reminding. Such naivety.  Of course I am surrounded by reminders.  Loss is not something external, it is within us.  Contained within our emotions and memories. Losing someone does not mean that the emotional ties are gone.  They are there forever.

Those reminders are everywhere.  Because they are within me not without.  When I received a Father’s Day marketing email from Pinterest yesterday, telling me that it is not too late and I “still have time to plan something for dad”, I found it hard to contain a mix of grief and anger.  I do not still have time.  It is too late. This is one of those gruelling hurdles, the first Father’s Day “without”.  Without my father.  I never will again have the opportunity to have that Father’s Day phone conversation, the line crackling across the distance, as I share those little snippets which I have saved up.  But I can’t fairly accuse Pinterest of being insensitive.  It is my association and emotions which prompt the reaction it does, rubbing invisible little sprinklings of salt into my too raw wounds.  It is within me, not without.

Nancy’s Point talks insightfully about loss, and shares important lessons, such as:

Grief’s intensity lessens, but the loss is for a lifetime.

Indeed.

monsoon droplets, captured like teardrops

Loss is something we experience from within.  Not without. 

Gradually adjusting to living without the person we have lost.

Re-entry. Accomplished? Kind of……….

Re-entry back into the spheres of life and work has been accomplished.  I guess. At least physically.

re-entry

Re-entry into Asia, Myanmar and Yangon took place on Sunday.  I travelled on the overnight flight from Amsterdam to Bangkok and for once the flight was smooth with minimal turbulence. Towards the end of the flight, and as we were flying over Myanmar (ironically) the pilot advised us that we would be starting our descent into Bangkok shortly.  Almost as an aside he mentioned that there were thunderstorms in the vicinity of Suvarnibhumi Airport so there could be some turbulence. Now thunderstorms and flying as a combination freak me out a little, so I decided to instantly file the information in the large “denial” folder in my mind.

lightning and plane
That worked initially as we started the descent, and I even managed to stay detached when we had a few pretty bumpy encounters with soupy clouds.  Then – BANG! There was a huge ”THWOOOOMP” kind of noise at the window and the cabin lit up as we air-kissed a bolt of lightning.  Inside the cabin there a lot of squeals and exclamations (although I didn’t understand the words as they were mostly in Dutch, I clearly understood what they meant), and great gripping of the arm rests.  The stewardess did not seem as alarmed as we were, and told us that we were safer in the sky than on the ground.  To say that this seemed counter-intuitive is an understatement, as we all know that lightning seeks out the highest point.  Plane.  Sky.  High…………  (I have since consulted Prof Google about this and it seems correct, would you believe?) The following fifteen minutes as we approached the runway lasted at least three hours, but finally we landed safely to an audible and collective exhale of breath. Re-entry into Asia?  Accomplished.

lightning and planes theory

I had over three hours in the airport before my onward flight to Yangon, so collapsed into the secret comfy armchairs near the departure gates for a bit and concentrated on staying awake and not thinking about the stormy sky outside. Finally we departed, the skies had cleared and our short flight was uneventful and pleasant. In no time, I was through arrivals and heading homewards to a waiting cup of tea!  Sunday afternoon was heading into Sunday evening. Re-entry into Myanmar and Yangon?  Accomplished.

The time difference between Yangon and the UK is 5.5 hours at the moment, thanks to British Summer Time. Returning to Asia, I usually find more difficult to adjust to than the travel to Europe as you lose several hours and morning in my corner of the world is late night in the place I have just left.  Thanks to the overnight flight and the intensity of the overall visit, I was physically and emotionally exhausted, so managed to sleep fairly early on the Sunday evening.  Which was fortunate as most folks in the UK would just have gone to bed when it was time for me to get up for work on the Monday morning!  Which I did manage to do.  Although it did require a very deep breath to face my desk which had been abandoned so hurriedly when I left for Scotland a lifetime earlier. Re-entry into work?  Accomplished.  Pretty much.

Overnight on Sunday and Monday, my sleep was broken however, by a sound which I did not recognise.  It was certainly some kind of animal, emitting a noise a bit like a throaty bray of a donkey crossed with a deep quack of a duck.  It was so strange and I was so disoriented that I disturbed hubby to ask what it was!  He was naturally not so amused to be quizzed on wildlife in the small hours but was able to tell me that it was a kind of bullfrog.  This is not the usual “happy party” frog noises I hear during monsoon, and I learned the following day that this is the noise which the Big Frogs make to call for the rains because they have had enough of the oppressive heat and want their monsoon parties to begin.

bullfrog

This seemed to work.  I was not long home on Tuesday evening and had realised that the frogs were silent.  However, in the distance I could hear thunder rattling around and before long it was clear it was heading towards us.  I could feel the air cool and thicken and a wind picked up, agitating the trees as the thunder became louder and the flashes of lightning more persistent.  The rain started abruptly, pounding through the trees and beating against the windows as the storm passed overhead, thunder and lightning simultaneously crashing around.  And then, with no surprise at all, the lights all went out.  The power was gone and I was in the midst of a quadrophonic water symphony, orchestrated by a group of actors including the rain, wind, thunder and of course the lightning conductor.  (ouch!)

Now sometimes power comes back quickly, and other times it doesn’t.  It is just a case of get hold of the torches, blackout bits and pieces and wait and see.  After about an hour the lights flickered back on.  You could hear the collective sigh of relief and blowing out of candles across the neighbourhood, followed by another collective “oh no” as they flickered off again less than a minute later.  Usually that is a good sign.  It means that the power is almost fixed and should come on again soon. All the while, the mugginess and humidity seemed to intensify and the lights stayed off.  And, all the while, the power stayed stubbornly off.  In fact it stayed off all night.  Which meant very little sleep.  Hardly great when combined with jetlag.  Especially unhelpful for productivity or energy throughout a demanding working day.  The power was still off when I headed out to work and was still off late in the afternoon when I phoned home.

Wednesday evening saw writing group, so I was later home than usual that evening. And to be honest, the thought of another night in that discomfort was not pulling me home.  When I did arrive home the lights were on and I could hear music playing!  What a great welcome!  Short-lived unfortunately. Hubby gently broke the news to me that the lock mechanism in the bedroom door had broken and the bedroom (and small attached bathroom were inaccessible)!  My first thought was that my swimming stuff was in there and the morning swim now sabotaged.  Next thought was for my toothbrush!  Then for everything I needed for the next morning to be able to turn up at work.  Isn’t it just typical that the day you can’t access your everything, is the day you have an Important Meeting and need to be looking the part! There was no way that door could be opened though, at that time in the evening and the only choice was to sleep in the spare room, wearing random pieces of laundry and breaking into the spare toothbrush supply from our last visit to Bangkok.  Another sticky and uncomfortable night, though slightly more sleep than the eve. The lack of morning swim though, really did make an impact – it is always amazing just how much more energy it gives getting up an hour and a half earlier for the swim and cycle.

Happily the locksmith arrived early and had removed the whole mechanism and opened the door within minutes.  With a whoop of happiness, I was able to access my appropriate attire for the day and make a start not too much later than usual.  Re-entry into sleep patterns and acclimatisation?  In progress.

So now, thank goodness it is the weekend and the chance to regroup a little.  Saturday morning saw me draw up a very quick five sticky plan to guide the weekend, the first one in a while as this has not been relevant the past few weeks.

IMG_0645

So re-entry has at least physically been accomplished, though it is remarkable how different the landscape looks following our bereavement.  I guess it just takes time for our senses and emotions to readjust.

Slowly looking ahead

I am attempting to reconnect slowly.  There are so many heartfelt messages to respond to, the practical tasks to take care of, the need to take time with each other and the understanding that we are moving through this grieving process.

My father has been laid to rest, and I believe he is at peace on the island which was home. The winds howled, cancelling ferries the day before, the rains hammered down, warm words of comfort were shared and tears were shed.  It was surely a day to remember, for a multitude of reasons.  Those memories evoke a complex mix of sadness, loss, love, peace and thankfulness.

I am sharing here some of the words which were spoken, and some of the images of the day.

He is Gone

You can shed tears that he is gone,
or you can smile because he has lived.
You can close your eyes and pray that he’ll come back,
or you can open your eyes and see all he’s left.
Your heart can be empty because you can’t see him,
or you can be full of the love you shared.
You can turn your back on tomorrow and live yesterday,
or you can be happy for tomorrow because of yesterday.
You can remember him only that he is gone,
or you can cherish his memory and let it live on.
You can cry and close your mind,
be empty and turn your back.
Or you can do what he’d want:
smile, open your eyes, love and go on.”

(David Harkins)

***

 They are not dead,
Who leave us this great heritage of remembering joy.

They still live in our hearts,
In the happiness we knew, in the dreams we shared.

They still breathe,
In the lingering fragrance, windblown, from their favourite flowers.

They still smile in the moonlight’s silver,
And laugh in the sunlight’s sparking gold.

They still speak in the echoes of the words we’ve heard them say again and again.

They still move,
In the rhythm of waving grasses, in the dance of the tossing branches.

They are not dead;
Their memory is warm in our hearts, comfort in our sorrow.

They are not apart from us, but part of us,

For love is eternal,
And those we love shall be with us throughout all eternity.
Anon

***

Celtic Blessing
May the roads rise to meet you,
May the wind be always at your back,
May the sun shine warm upon your face,
The rain fall soft upon your fields
And, until we meet again,
May God hold you in the hollow of his hand.
Anon

Leaving Oban as the dawn breaks, over quieter waters than the eve

Leaving Oban as the dawn breaks, over quieter waters than the eve

DSC_0148 DSC_0149 DSC_0156

In this spirit, we are looking forward and preparing a fitting and meaningful plan in his memory.

The Malcolm Miller, of the former Sail Training Association (now Tall Ships Youth Trust) Image from http://www.orpheusweb.co.uk/bob.williams/sailtrain/1998-2001.htm

The Malcolm Miller, of the former Sail Training Association (now Tall Ships Youth Trust)
Image from http://www.orpheusweb.co.uk/bob.williams/sailtrain/1998-2001.htm

Transience

Seven days of incredible intensity.

Tears, peals of laughter, loss, gains, snowflakes, heartaches, woolly socks, biting winds, apologies, reflections, poignancy, hot steaming mugs of tea…….

a snowy welcome

A week in Scotland

IMG_0123

Packing now for warmth and tropical sunshine again -unimaginable in these blizzards.

Back again soon, for sure.

Ethereal voices

It is approaching one month since the online community I spend a great deal of time in was convulsed by the shocking loss of two smart, articulate and wonderfully snarky women on one day.

It was evening in Yangon, and I was already in a rather fragile frame of mind as it was only a few days since my father had taken ill.  I was just checking my email for family updates before sleeping that Monday evening, 6 February.  After checking email, I flicked quickly through news and updates from my online friends for the last news of the day. I caught sight of a few tweets which stopped my heart – they were messages of loss and condolence.  With a sense of dread mixed with a need to know, I scrolled down through the tweets, my fingers trembling.  My heart stopped.  Right across the world, in New Jersey, where it was early morning, our dear friend Rachel had been taken by cancer.  I was unable to read the flurry of tweets, and the Facebook tributes which were flooding in, because of the tears in my eyes.  I knew she had been very ill, but how could this happen when her online voice was so strong and full of vitality?  The words on her blog posts, her Facebook updates, Tweets and other online interactions told clearly and factually of the toll which metastatic disease was taking on her body.  But her voice was another matter.  A combination of humour and a feisty spirit formed a voice belying the gravity of her illness.  It was simply inconceivable that such a voice be silenced.

Sleep eluded me that Monday night, unsurprisingly as I tried to rationalise and process this.  Still I headed for my dawn swim on Tuesday morning, ploughing up and down the pool, my mind on Rachel, my father, before returning home.  After breakfast, I opened up my window to the world, my laptop.  Because of the time difference, it was approaching time in my corner of the globe for the weekly #bcsm Tweetchat, which takes place on Monday evenings in the US.  I knew that we would have an emotional discussion, as Rachel has been a vocal and lively participant in the sessions and I steeled myself as I signed into the discussion.  Nothing, however, prepared me for the tweets in front of me. Tweets full of pain, disbelief and anguish broke the news to me of the unbelievable loss in one day, of Susan as well as Rachel.  The discussion was dedicated to these remarkable women, both of whom advocated tirelessly and tenaciously on the subject of metastatic breast cancer.  How on earth could these women, whose words were written with such passion and vitality, be taken?

This transported me back over a year in time, but to a similar emotional space. That of a crushing disbelief when I learned that my friend Bad Fairy had been taken by metastatic breast cancer in October 2010.  Bad Fairy and I had been diagnosed a few weeks apart in 2009 and started blogging around the same time.  Our experiences were very different but we connected through our blogs.  She would call by my blog and leave a sprinkling of fairy dust, and I would leave a classy gecko calling card when I visited her blog.  Her writing was refreshing, her ideas original and although she was dealing with metastatic cancer her voice was strong and full of life. At the time I did not realise that I would read her words, not truly comprehending the gravity of her disease.  The words told me how ill she was, but told with such a bright voice I missed signals that she was terribly ill.  I was unable to access blogspot at that time, and missed the last couple of posts she wrote.  When I learned finally through her husband’s post that she had been taken, I was bereft and utterly unable to comprehend her loss.  I could not equate the strength of her voice with the frailty of her physical body.

Another contradiction in my connection with Bad Fairy, was that I did not even know her name.  This reminds me of my friendship with Rachel.  We initially knew her as Anna, Anna Rachnel.  And then one day, I read her post about chest pains.  I was so caught up in her account of the investigations, fear and trauma of the chest pains that I almost missed her revelation.   I had to read it through more than once to catch the enormous step she was taking.  This was when we learned that her name was in fact Rachel, and not Anna.  Her footnote to that blog posting, written some time after the event, talked through the big step she had made of opening up and revealing her real name.  it took me quite some time to make the shift, but now I find it hard to think of her as Anna.  And I only learned Bad Fairy’s name in the last comments on her blog. There are so many complexities in our online relationships.

That sense of disbelief and even misunderstanding does not abate.  That disconnect between the voice and what it reports.  It compels me to question why I have difficulty in relating a voice with the actual language and content of the story.  Why is it that the unwritten elements of our communications convey such a strength and vitality and how can it be that they override the actual words?  I cannot pretend to understand why, but I most definitely know that it is so.

That contradiction between voice and body brings us something tangible though and that is a powerful and enduring legacy left of and by our voices.  The words have been written and cannot be erased.  The voices of our friends live on, in the online and other spaces storing them, but more than anything else, those strong voices live on in our hearts and minds.