One Hundred Days

Just a few days before the spring equinox and a couple of days shy of the Ides of March, I took this picture on the way home from work. The bare branches of the trees silhouetted against the deep blue evening in that half light after the sun has rested for the day, just as darkness begins to settle. A northern sky which held the promise of spring and lightening, lengthening days ahead, cloaked with the unseen threat of COVID-19.

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As I made my way homewards, I passed the shop, the houses and my neighbours, unknowingly, for what would be the last time in many days. Indeed, now one hundred days, and still counting.

This was the evening I took my regular journey home from work, knowing that the world was changing rapidly and drawing in around us. Not knowing that this would be the start of a strange and surreal period of lengthy isolation. That evening saw the long and emotional conversation with family which drew the inevitable conclusion that I would close my door on the outside world for the foreseeable future, if I wanted to stay safe from the hold which the virus was taking around us. That evening I captured this image of what I thought was an everyday moment, my last photo before everything changed.

I had been anticipating those longer evenings, and the days when I would arrive home from work in daylight. I had moved into my new home as autumn turned into winter, a few days after the autumnal equinox, as the days smartly shorten towards those long, dark days of Scottish winter. Six months later, I knew that I would soon be able to enjoy daylight time at home in the evening after the day at work.

But that certainty was lost in the new uncertainty that was isolation and lockdown.

It has been replaced with another certainty though, one which I hold on to tightly. While humankind has spun out of control in the most developed of contexts, nature has taken a firmer grip to remind us that we are guests on this earth. Around ten days into isolation, the weather brightened and I ventured out into my garden. My curiosity was piqued by a blaze of blue colour beneath a fruit tree. The beauty of newly moving into a home with a garden is that the coming year and seasons will bring surprises. Snowdrops and daffodils had welcomed me home as the year started, but hidden in weekday darkness I had missed much of their presence. This blueness was to be my first garden surprise, as the season continued to march forward, while humankind stood still, holding its breath and counting the R number.

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I am still not quite sure what these little blue heralds of hope were, my first excited thought as I spotted them at a distance was that they might be bluebells. I have always wished for a garden with bluebells. As they took their shape, they continued to puzzle me and I still don’t know exactly what they were. Perhaps some unusual crocus or another early spring flower. But not bluebells. For bluebells were starting to sprout elsewhere in the garden fulfilling my bluebell dreams.

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Gradually as the days determinedly lengthened, the outline of spindly branches on the trees softened and little growths appeared. Tiny blossom buds were forming, in shades of white and pink .Little promises of hope and regeneration.

I have always dreamed of a blossoming tree in my own garden. My dreams were taking life in front of my eyes.

The labours of an elderly woman over many years in a garden have gifted to me, a season of colour, surprise and even flavour.

Have you ever wondered how blossoms transform into fruits? I have followed the journey of these miracles over the past weeks, fascinated. As the petals gradually fell, I could see tiny promises form in the stalks. Baby pears the size of cotton buds, a cheeky miniature apple the size of a marble,

Through May and into June, the fruits continue to develop and mature. The young, tiny pears are slowly growing, cherries begin to ripen, delicate plums and apples take shape. Gooseberries appear. Gooseberries. I had forgotten about gooseberries, once a staple Scottish summer fruit, now rarely seen as more exotic imports take over popularity. I seem to have the makings of an orchard. I didn’t know I dreamed of having fruit trees in my garden, but my happiness suggests that secretly I did.

The surprises keep catching me. unawares. Just the other day I spotted a glimpse of red through the green foliage. The green berries which had been forming on the raspberry bushes, have been ripening. Smatterings of red appeared as I approached the bushes. The raspberries are quietly and studiously sweetening and maturing.

This is Day One Hundred, the summer solstice, a solar eclipse far over the horizon in the southern sphere and the seasons moving steadily forward as the planet continues to journey around the sun.

This is a day I could not have imagined back in March when I headed home, pausing to take a photograph of a wintry branches silhouetted against a changing sky. While the everyday activities we took for granted are paused, what more powerful reminder that we are guests on a moving, breathing earth.

This morning, my one hundredth morning in isolation, I enjoyed a handful of those fresh raspberries with my breakfast. Yoghurt streaked vibrant red, carrying a taste of childhood summers. I relish the flavour as much as I embrace the promise of hope and recovery that those raspberries have brought to me.

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Opening Up

Every time I think that the wild welsh poppies in my garden have finished blooming, I spot another blaze of orange, and more little buds shyly opening up. Just a few more days of colour, these persistent little poppies tell me as they gradually fade, and their petals fall. And the cycle continues, as I spot another few buds, the orange crumpled colour pushing the bud open for tomorrow’s bloom

Opening up crop

All the while, discussions continue and changes are announced of a wider opening up. Doors are opening, faces peeping out and families making tentative plans to gather. At an appropriate distance, and in small numbers. The world which closed so abruptly more than two months ago is slowly starting to open up, gingerly and not so gingerly.

I have mixed feelings about the opening up of the world, and the easing of lockdown. I am not ready. And I feel embarrassed to admit it. When I went into isolation it was sudden, and complete. Not a soul has been in my home, and my face to face interactions with other humans have been few and on my turf quite literally. Food is delivered on my doorstep, with my door closed. Anything which has been touched by the hands of another is subjected to careful sanitising and its own period of isolation. Conversations over the fence rely on warmth of words to compensate for physical closeness. Closeness and warmth on screens and blinking phones have strengthened and sustained. I have become surprisingly present in this new reality. Throughout these past weeks, I have become less fearful as I have built this safety shield around me. I find that I am not ready to dismantle it and allow the danger which is still lurking in invisibility to contaminate my safe space.

I am not officially shielding. I did not receive a nine-page letter which advised me to stay at home for 12 weeks and avoid contact with others. However, the public health announcements which I now know by heart speak directly to me and those who have health issues. Issues which make us highly vulnerable and at risk of very severe illness if we were to become infected with the virus. My shielding might not have been official, but it has been faithful.

I know that I am not ready to open up until I know how the pandemic responds to this easing of lockdown. This doesn’t mean that I find isolation easy. It means that my fear of the virus is greater than my struggles with isolation. I do not want to take steps which could place me at risk. Even if that risk is very low, the effect of the virus is no less dangerous. That is my rationale and emotionale.

I know many others who feel differently, and who are anxious to start opening up their lives and making those baby steps towards that elusive new reality. It is heart-warming to see plans announced and pictures of small gatherings, tears and smiles. Photographs and videos on social media of this new found freedom sing with the happiness of opening up.

Others are making bolder, nay riskier, step. Steps which cause intakes of breath, tutterings and mutterings. Steps which strike fear into the hearts of the cautious souls who are afraid of what cannot be seen.

None of us can truly understand what it has been like for others as we have experienced isolation and lockdown. For most of us, it has been emotionally demanding, tears appearing unexpectedly and inappropriately. Reactions disproportionate to their cause. For many, a difficult domestic situation suddenly became a dangerous one in precarious situation. Reports of domestic violence increased drastically. None of knows what is happening behind the closed doors of others. And none of us knows, how each of us feels about the uncertainty of the future as the lockdown starts to ease.

And so, while I can, I would like to open up at the pace which works for me. I don’t want to burst into colour suddenly. I am happy to peep out through the opening bud and just see how the land lies.

Once I feel that the outside is a place I feel safe, I will push through and step back into the world. But until I reach that point of confidence, I will stay in my safe haven, watching with joy as those who do feel ready, are taking those steps.

Corona Times – learning a new language

Learn a new language while you are in lockdown, they said. Or how to play an instrument. Make the most of this gift of time. Learn some new skill. Bake sourdough or become a yogi. Read those books lying covered with dust on your shelves. Zoom your friends and family. Yes Zoom is a thing, and the world now functions on this new thing. Stay up till midnight for three nights running to try to secure a Tesco delivery slot. Weep each time you fail.

It seems I have been learning a new language. Some words I had not heard of ,or expressions made up from a string of known words forming to create a new expressions which have suddenly taken a very clear and specific meaning. Not a foreign language, the words are already familiar. The meaning, however, is not. This is the language of Corona, incomprehensible before spring 2020. Now it is the basis of most of our conversations.

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I imagine parallel conversations pre and during the corona weeks. Pre Corona, I imagine to be something like this …

Pre Corona – Have you been furloughed?

Pre corona response – blank stare. Is this an agricultural expression? Do I look as if I have been furloughed? Am I covered in mud?

 

Pre Corona – Our aim is to flatten the curve.

Response – blank stare. What curve? Is there a bump in the road?

 

Pre Corona – Are you shielding?

Response – guilty expression. How do they know I am hiding an escaped bank robber under the stairs?

 

Pre Corona – You need to self isolate.

Response – confused expression. What have I done wrong? What on earth do you mean by that? Isolate myself?

 

Pre Corona – social distancing must be observed.

Response – utter bewilderment. How can distancing be social? Is it not anti-social? Have I said something offensive? What does it even mean?

 

It is fascinating that society morphs rapidly to adapt to the threat which the pandemic has thrown on to many of us. We have quickly become used to a life which finds us speaking to people on screens rather in person and where our homes become places where we cannot even invite a close friend in for tea. While it is strange, we have become oddly accustomed to very different conventions even if they don’t quite sit comfortably. The rapid shift in language is another sign of resilience and adaptation of humankind as our expressions and vocabulary are shaped for the current context. A context which is new, sudden and which turns many longstanding conventions on their heads. It is an example of how we adapt to cope with a new, urgent situation.

Only a few short weeks into Corona times, we no longer blink when informed that certain activities will be permitted as long as we maintain social distance. We don’t need to ask what that means, it is solidly in our mindset. Social distance – 2 metres, the size of a double bed, or two shopping trolleys end to end, or an adult kangaroo. We are thankful that the furlough scheme is extended and understand its importance in protecting employees and the economy while we fear the eventual cost to society. We no longer think of muddy fields.

I do wonder how our vocabulary and language will be changed by this sudden influx of new vocabulary and very specific expressions and usage. Language does evolve and develop naturally, as we see when we hear the announcement of the ‘new words’ of the year which are added to the dictionaries. I will be fascinated to see how this turn of events will be reflected in new turns of phrase in the longer term.

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In the meantime, don’t worry about learning a new skill. You have already learned a new language. Focus on staying safe and staying well. And remember to wash your hands.

Forty days and forty nights

Today marks my fortieth day in isolation. Last night, my fortieth night, a night which saw me visited by disturbing and unusually violent dreams. It is some time since dreams of conflict and air raids have come to me, but last night I lived through serial dreaming of life-threatening attacks, fleeing and sheer terror. I was transported back to my humanitarian work in conflicts in South Asia and the deep basic fear living in such violent times. My recent anxiety dreams were humorous little vignettes in comparison.

I find myself divided. I can rationalise this experience and how my mind is dealing with the scale and uncertainty of such an unprecedented situation. I know and understand that our mental wellbeing is being tested to the very ends of its capacity. I know I have techniques at my fingertips such as meditation, taking control of what I can, escapist reading and when all else fails, the most tasteless of TV viewing. But where the conscious mind strives to stay dominant, the sub conscious and emotional side rise up when least expected and before I know it, I find myself tearful and fearful. I know it is a natural response, I know it is valid. And I know it will pass. Sooner or not so sooner.

What I am struggling with, is how to balance the ability to understand and rationalise the psychological process that I am going through, in the company of very many, with this desertion of my resilience and how that actually makes me feel. I know how I should feel. Thankful, resilient, safe and reasonably well. And know how I do feel. Frightened, alone, distraught and tearful. I am not looking for advice or sympathy. I am purely looking for this to pass, and for this emotional fragility to be validated. It’s ok to not be ok.

I do want to emphasise that it is not so much the isolation, and being on my own that is troubling me at the moment. Though I do not deny that it is odd and disconcerting not being able to go out at all and interact with people in so many walks of daily life. No, it is more that I have no idea when this will end, and what the broader future looks like. So much is impossible to predict while the pandemic is in these early days. Big questions trouble me. The economic shakeout, especially for someone of my age; the health scenario and the prospect of being unable to go about daily life again for some considerable time, especially for those with age and underlying health conditions, again, again like myself; the shock that this will place on society in broader terms as the fingers of this virus dig into already existing divides in our communities; the fact that this is the first truly global emergency I have ever seen, there is no ‘outside help’ to rescue us. We will not see a return to the way things were, but gradually life will settle into its new normality. I just cannot envisage what on earth that might look like and the changes that we will need to adapt to.

I strive to see past this, despite its enormity, and keep a focus on nature and growth around me. Some days it works better than others.

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Forty days and forty nights, this is not a long time but nor is it insignificant. I cannot think of another time of life when I have been totally isolated for more than a few days or a couple of weeks. And quite why this emotional heaviness has come at this time, is a mystery. All I do know, is that this is real and I find myself struggling. But I also have a conviction that this too shall pass, and for now it is ok not to be ok.

None of us is truly alone.

Grounded: Poetry for these times

Grounded.

A punishment. A compliment. An observation. An instruction.

A sign of our times.

 

You’re grounded!

You’ve been naughty!

You can’t go out, and see your friends,

no cinema,

or chatting at the corner

Until I say!

 

You’re grounded.

Setting stress to the side.

Breathing in.

Eyelids resting.

The mind’s eye,

unseeing the pain and torment.

 

You’re grounded.

So serene.

Centred.

Settled.

Calm.

How do you do it?

I guess you meditate?

 

You’re grounded.

Stay in, save lives!

For now.

For many days,

and weeks

to come.

 

You’re grounded.

A time to still the soul,

put anxiety to the side,

and try to listen,

watch,

breathe.

 

Do you hear the birds,

as they gather in the timbers?

The bees flitting from shrub to hedge,

checking freshly sprouting buds and blossoms?

Can I hear the breeze

whispering

in the overgrown undergrowth?

I can feel

the late spring sunshine

pushing aside

the winter chill,

trying to warm

my anxious soul.

 

Much is unknown.

New.

Fearful.

Sorrowful.

Tragic.

Unprecedented, all voices say.

Yet the days move along

unaware of mankind’s distress .

 

Still the soul.

Be grounded.

Each day

new buds unfurl,

newborn lambs emerge, surprised innocence in their wide eyes.

Each day

the sun climbs higher in the northern sky

towards summer

and beyond.

 

Towards the days of a new, renewed now.

 

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Paralysis – reflection and reminiscence

I feel as if I have been here before.

Over 10 years ago, I heard words which were to rock my world. The landscape around me shifted seismically and everything I thought was certain, was no longer so. In a state of shock and disbelief, I embarked on a path step by step. Tiny step by tiny step. Mostly forwards but not always. A line in the sand had been drawn – when I heard the surgeon say “this is highly suspicious of cancer“.

I remember in those early days following diagnosis, being astounded that the world continued as normal all around me. As I moved through the treatments and procedures my focus was on survival and on moving from one step to another. I became gradually used to the new landscape, and was able to continue to function.

However, I was aware that as I garnered my emotional, physical and psychological strength and resilience, I felt as if life was on pause. I was completely unable to think beyond the immediate, let alone plan. I counted time in increments through treatments, unable to consider making arrangements for what we all think of as social and personal activities. It was like a paralysis, I was cocooned, unable to move.

And the realisation has dawned on me that the emotional space I am in right now, as the pandemic is taking its hold, is uncannily like that space 10 years ago. This is day 22 of self isolation and shielding. I arrived home from work 22 days ago, having agreed that afternoon that I would work from home from then on to reduce risk while travelling to work on busy buses. I picked up a couple of items from the shop on my way home. Excellent stocking up – a jar of red pesto, a small packet of macaroni and some miso soups. I had no idea when I shut the front door, that I would not be leaving again for the foreseeable future. Family conversations that evening were frank and sobering. We talked through the risks that I faced. Age and underlying health conditions meant that I would not fare well if I contracted COVID-19. Additionally, as the pandemic took hold, the health service would be placed under extreme pressure to accommodate very ill patients. We realised at that point that I should immediately self isolate. And so, on Friday 13 March, I closed my doors to the outside world.

In many ways, life continues. The sun rises, it travels across the sky and taking a little longer each day, it sets again. I work from home, hold meetings and discussions online. Life has been transferred predominantly online. I have FaceTime, Zoom and Skype chats in the evening with friends, sometimes in small groups. Our Book Club and Writing Group now meet online. But even though life is continuing, it has been changed irrevocably. We don’t know when it will settle and resume and in particular, we don’t know what the new world will look like when it does settle. 

The aspect which is so difficult to comprehend, is the enormity of this. This is not a personal or localised crisis. This is a crisis for humanity across the globe. And if the most developed and sophisticated health and social support systems are buckling under the pressure, the challenges which the most vulnerable communities face is terrifying.

This is not an individual trauma, we are in a collective state of shock and I believe that we are just at the start.

So again, I find myself in this strange paralysis. This is not a pause where we can make the most of this new “free time”. I am finding that this is a time for adjustment to this new altered reality we find ourselves in. And I am finding that we are responding and reacting in different ways. This is bringing out the very best in many with heart wrenching accounts of kindness and selflessness, and sadly the worst in a small minority.

As I read more and more from fellow cancer veterans, that they are shaken by how much they are reminded of the times of shock when diagnosed, I have been reflecting back on my own diagnosis time. When I look back over my blog posts from those days, I could quite easily do a “find and replace” exercise, replacing “cancer” with COVID19. Back then, I would lurch from fear and anxiety to grim determination to beat this thing (as if I had any choice in the matter). But through it all, I was bathed in this numbing paralysis. And that is how I find these days, and weeks ahead. I can deal with the immediate. Working from my kitchen table, eating from the contents of my fridge and cupboards, household tasks, working out how to get an online shop, being humbled by the kindness of family, friends, colleagues and neighbours dropping off care and food packages, and even birthday cake on my doorstep. But I cannot shake off this sense of being on hold, paused as we are moved forwards through this evolving crisis.

The sense of deja vu prompted me to re-read an old blog post where I had commented on the extent that my world and landscape had been so drastically altered. And this is what I wrote, over 10 years ago:

There are two things which shape the way I see this diagnosis.  Firstly is the fact that life is less about what happens to us, than how we deal with what happens to us.  I can’t change the diagnosis but I am in charge of how I handle what is coming.  So be prepared for inappropriate humour and oodles of feistiness.  The other thing is hard to describe.  Life changes with such a diagnosis, and you can’t go back to what it was before.  From the day I googled galore and realised that there was a real possibility that this was breast cancer, I realised also that there are many things I can no longer take for granted.  All plans change, in fact all plans are cancelled or put on hold.  It is a bit like the sun rising every morning – you know you can rely on it, you know it will come up and some days are sunnier than others and you can see it clearly, some days cloudier but it is light so you know that the sun did rise again.  But imagine if suddenly, one day the sun doesn’t rise.  Everything changes.  Everything fundamental you take for granted, suddenly shifts.  No daylight, no warmth, no growth and the colours all change.  But, after the shock and with human resilience, the will to survive, creativity and technology, ways are developed of dealing with it and life continues.  But it can never be the same, it can never go back to the way it was before.  All right, that is an extreme and dramatic analogy, but there is something about this diagnosis that feels similar to me.

December 2009

And  I realise that I don’t need to shake off this feeling of paralysis. I need to embrace this as my own way of coping through this. It won’t last for ever. This too shall pass. And life will gradually settle. The cancer experience means that I know that it won’t be the same, and it could be very different. And, as long as COVID19 does not take me, then life will gradually resume in its new formhope

And indeed, life does continue. New shoots, buds and flowers are appearing as spring moves forward towards summer. And the sun rises, it travels across the sky taking a little longer each day, and sets again, in preparation for the new day and days to come.

African sunset

An epiphany

IMG_2644Those days of the Big Checks in Bangkok are in the past in many ways. Many years were punctuated by three monthly check ups, and then six monthly with more thorough checks annually. These were a Big Deal in my post diagnosis life. I was fortunate to have such thorough follow up from the end of the heavy treatment in mid 2010 until I left Asia in mid 2016. Another world, another lifetime, it often seems. Now checking is different in frequency and nature. The past is indeed a different country.

Every year in October, in addition to the three month or six monthly checks, I would turn up at the hospital for what Dr W fondly called the “Big Check”. He had explained to me at diagnosis, that once the active treatment was completed I would be called back for checks every three months for the first two years, and every six months after that until I reached the five year point. Then I would graduate on to annual checks. The three and six monthly checks would be lighter, but at the one year point I would additionally have a mammogram, ultrasound and any other checks indicated.

Those checks were a mixed blessing. I approached each round of checks with trepidation, and the annual Big Check with nothing short of dread and fear. I knew that I was incredibly fortunate to have a variety of bloodwork, physical examinations, mammogram and ultrasound and if indicated, further scans such as CT. I knew that if there were any nasty activities underway and any signs of progression or recurrence, there was a very high chance that these would be spotted during the Big Checks. And of course, that was my greatest fear. That there was some nasty malignant beavering away of cell multiplication out of view. Yet, alongside that Big Fear, there was the attraction of knowing that if the checks all came back without any worrisome results, then in all likelihood I was in very good health and the designation of NED (No Evidence of Disease). And NED is exactly in whose company I wanted to be.  If I passed through these major checks with no worrying results, then I would be rewarded with enormous relief and reassurance.  l could then breathe out and get on with some serious living until the next round. My first followup checks were in early July of 2010, thus by by strange coincidence my first Big Check took place in October 2010. Exactly a year from diagnosis. And also the start of the visible Breast Cancer Awareness month which was even present in Bangkok.

Those first checks set me on a path of appointments, blood taking and other checks regularly until I left Yangon in June 2016 to my new life in Rwanda, saying goodbye fondly to Drs W and W2, and the teams which had looked after me. We had been a team for 7 years and had been through a lot of hiccups and nastier moments together.

As well as the checks, my ongoing followup consisted of taking Tamoxifen once the active treatment was completed in the May of 2010. This was not a pleasant experience with its many side effects including the very nasty one which tried to do away with me altogether – the pulmonary embolism which appeared in July 2012. When I was first prescribed Tamoxifen, research and trials indicated that the prognosis was best when patients took the drug for 5 years. The prospect of 5 years on a medication with such heavy side effects is daunting. When the embolism happened I was taken off Tamoxifen immediately. And prescribed Femara/Letrozole. This is an aromatase inhibitor and works in a different way to Tamoxifen which is a selective estrogen-receptor modulator (the wiki link is need to explain that as I am not able to do so!) Femara is more usually prescribed for women who are post menopausal. It has just as many side effects, equally heavy and unpleasant such as joint pain, weight gain, fatigue, dizziness, increased cholesterol just to name a few and I was both thankful and frustrated about these “extras“.

As I was approaching four years of taking the hormone therapy Tamoxifen and then Femara, and almost able to touch the five year point when I would be able to stop, new research findings were hitting the breast cancer headlines. What an ironic blow to learn that women who took the medications for ten years had better outcomes than those who did not, or who took them for five years. I knew what was ahead before the next round of checks. And sure enough. Dr W2 recommended that I keep on taking the Femara. For an additional five years. Five. Whole. Years. That felt like for ever! Or until mid 2020 …

Leaving Asia and the attention of Drs W and W2 with the reassurance of the Big Checks, was a massive step out of a comfort zone which I loved to hate, and really valued. Moving to Rwanda, meant that I had an annual mammogram in Scotland around the time of the checks in 2016 and my unexpected return to Scotland in 2017 meant a very different approach to cancer follow up, particularly as I approached the ten year point from diagnosis. This involves an annual mammo and a letter to let me know if there is any need for follow up, and a separate check up with the breast nurse. No single day to focus on both with dread, and knowing that clarity would be provided. No bloodwork and tumour markers with my record and trends. Instead, lighter checks over several days or weeks. A very different experience, particularly psychologically.

This year, I had to juggle the dates around as my nurse appointment was scheduled earlier than the mammo so results would not have been available at the consultation. So with some phone conversations, and a house move all underway, it was agreed that I would have the mammo and then see the consultant prior to moving to a new area. This took place, ten years to the day from my formal diagnosis and surgery by some very bizarre coincidence. These checks are not nearly as stressful as the Big Checks in Bangkok because they do not include bloodwork so I have no idea if tumour markers are within the trend that was clear throughout the regular testing in Asia. Occasional testing of markers is not useful, so I did not miss the results, just the ongoing knowledge that these were stable. The significantly lessened stress of these checks is balanced by the limited reassurance. A little sigh of relief, but the underlying nagging uncertainty of NED status.

So after a very short wait, the  consultant invited me into his consulting room, and noted that I had had much of my treatment overseas, asking me if it had been Paris or Singapore? I began to explain …

The mammo result was unremarkable, happily and we talked through my general health and the worries that I always harbour. Then we talked about the Femara. I was fully expecting there to be some new research which indicated that results for women who took the medication for 15 years had better outcomes … and prepared for that news. To my surprise, he said that the latest research and analysis shows that there is no marked benefit in staying on Femara beyond 10 years. He also said that there was a kind of a ‘hangover’ of the medication as the benefits stay in the system for some time after it is stopped. This was the precursor to him advising me that I could stop taking Femara. After TEN YEARS. He asked how many tablets I had left before I would need a new prescription. I had around 3 months, and that would take me through to early January. “Then, I suggest, that you continue to take these until they are finished. And then stop. There is no benefit in getting a new prescription, you can stop when they run out”.

And  just like that, I was given permission and the advice to move forward by a giant step.

I have been taking this feeling of lethargy, joint pain, and general effort needed for everything I do for granted for so many years, I did not actually believe the day would come when I would no longer be taking this heavy, albeit probably life preserving medication.

And so around 20 days ago, on Twelfth Night, 6 January,  I had my own personal epiphany. The realisation that this ten year phase had come to a close. As I prepared to go to bed, I took my glass of water and the last Femara in the packet. Hopefully, my last ever Femara. The end of an era indeed.

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I am looking forward to seeing if there is any change in how I feel. Let’s see. One thing is for sure – I am bound to tell you.

Envisioning 2020 with a three word mantra

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It was ten years ago, on New Year’s Eve in Bangkok that I first spotted that Tweet about three words which revolutionised my approach to the coming year from then onwards. It is no secret that this resonated immediately with me and three words formed with incredible clarity and haste. I am still quietly astounded how this practice has embedded itself firmly as I now embark on this process for the eleventh year running.

I am always astounded by how well my words serve their purpose, guiding, reminding and encouraging me through the year. This year has been no different and my mantra of “script, nestle and nourish” have been by my side through another year of transition. I have been reluctant to lay them gently to the side this year though. The transition has been far slower than I could ever have imagined, and I could quite comfortably take these words with me through another year and I did consider this. However, the prospect of this emotional and psychological review and cleanse is valuable and I again have found the process of identifying my priorities and the right three words one of enormous benefit. So, I will keep my 2019 words tucked away, behind my new words, reminding me that none of my words are ever discarded. In fact I believe that they build on each other, and I now have a wonderful foundation of words and mantras that remind me how greatly I have travelled since December 2009 and how much there is to be thankful for.

2010                Recovery, discovery and laughter

2011                Harmony, vitality and adventure

2012                Resilience, escapade and wonder

2013                Focus, treasure and design

2014                Dedication, integrity and flair

2015                Breathe, stargaze and realise

2016                Reorient, nurture and crystalize

2017                Emerge, explore and intend

2018                Search, settle and weave

2019                Script, nestle and nourish

These words tell the story of my life over the past decade. In particular a decade since my cancer diagnosis, but so much more than that. I can recognise each year and with it, the feelings and emotions of those times as much as the significant events in each mantra.

Before I introduce the mantra for 2020, the new year and indeed the new decade, I like to reflect briefly on those words which have accompanied me through 2019, “script, nestle and nourish“.

Script

Writing continues to play a key part in my lift. I have found a wonderful writing tribe in Edinburgh, and although I do not spend nearly as much time as I would like writing, this hour weekly provides so much more than a space to shut up and write. It provides friendship, like minds, new faces and encouragement. I still have my writing project alive, but needing an infusion of deliberate effort to move it forward and, dare I hope, complete it. I have set the path for the coming year by reconnecting with my writing mentor in a commitment to dedicating time and energy to this. Having my own space finally, and establishing a creative place in that is part of that commitment and motivation.

Script was also about being intentional in shaping my life. It meant putting effort into the things I wanted to change, and writing my own story. And that is also apparent in the other two words.

Nestle

This has been the central word to the year, appropriately in the heart of my 2019 mantra. The transition from overseas life to finding a forever home has been complex and my eagerness to finally settle in a space that I intend to stay in the very long term has taken long to realise. I finally found myself able to start searching properly in the spring of this year. This was both exciting and daunting. I knew in my heart what I was looking for – a quaint little cottage-type home, close to the city, easy to commute, in a nice neighbourhood with character and some history and tradition. Some green space and a place for a bird table and feeders. When I was looking for a place to call home in Rwanda, I put my thoughts together, and apart from a dearth of jacaranda and challenges in getting frangipani to thrive in Scotland the rest is incredibly apt.

My wishes were clear, and the search started in earnest. With it came the abrupt realisation that there was an incompatibility with many of these requirements within the means I had available. My search was wide, and weekends and some weekday evenings I would be on a bus, exploring new communities and potential homes. And there were very few which came anywhere near what I was looking for. The process was draining, but invaluable. I learned what was available and what were the key priorities for me. I knew which areas I needed to compromise. I came close to thinking about putting in an offer, but something always stopped me. I was not ready to commit, just in case the perfect home was round the corner. None of the 29 places I viewed were quite right and not how they were portrayed in the advertising. Camera angles are very deceiving and can make tiny rooms look cavernous. I had entered the year eager to settle, and now midsummer was approaching with no sign of my forever home. In early June, I arranged a viewing at another property, a quirky wee place, which looked really promising, and spotted that there was an open viewing at another place, a dear looking little cottage, nearby just beforehand so thought I would pop in there too while I was near. And it quite took me by surprise. It ticked many of the boxes that I knew were important to me, but I had to look beyond the fact that it needed a great deal of work to make it home. but I knew that the other option was more promising, so I headed to view it with high expectations. And it was also suitable, but I felt a sense of very slight, almost intangible, disappointment. It also needed work but had incredible character.

I decided that I would put in an offer. And with some deliberation and to-ing an fro-ing I decided to put in an offer on the other place too. The closing dates were adjacent, and I was almost frightened that my offer on the first would be accepted, as I realised, almost despite myself, that I seemed to be setting my heart on the little cottage. I was not disappointed that my offer for the quirky place was miles short of the one accepted. Now I had to go through the same process 24 hours later, but with a very different frame of mind. To cut a long story short, the process was not clear cut, but in the end on a midsummer’s day, that truly was the longest in many ways, my offer was successful. I was delighted. I knew I had found my home. I also knew I could not move into it until some essential work was done, but I was very much closer to nestling.

A month later, I had my keys just before I set off on my Voldemort trip, with the knowledge that I was returning to Scotland by train to the prospect of my own home and under my own terms, unlike my abrupt return two years earlier. This gentle train journey homewards was truly a “homecoming”. And a few days after the autumnal equinox, with the critical elements of the essential work completed. I was finally able to move in, unpack and begin to truly nestle.

Nourish

Now, the emphasis on nestling has probably indicated that while nourish has been an important guide, it has had to fit in alongside, “nestle”. Rushing around, getting ready to search, undertaking an extensive process of viewing and then readying my home to live in has nudged my focus on “nourish” slightly to the side. Not quite neglected, but it is not to be forgotten as I move forward to 2020.

As the day dawns on the new decade, what kind of 2020 do I envision? The past weeks have seen me pondering, contemplating the year ahead and how I want to shape it. As in recent years, I have travelled in different directions, playing with different ideas and words, reflecting on the aspects of the coming year which I want to focus on and I now have the words I feel will guide me forward. And the words which have emerged are:

Still, dwell and glisten

Still

My first word is “still”. Not the adjective but that beautiful verb which means to calm or become quiet. I feel the need to still my soul, my body and my mind. Much of 2019 as spent running around. A great deal of this was readying for the search for my home, those long weeks looking and covering a great deal of ground physically and emotionally, preparing to move and then starting to settle. My mind and body have not stopped. It is still to still, to allow myself to breathe again. It is time to quell my anxieties and focus on mindful and meaningful days. There is plenty to fill my time, I just don’t need to be constantly “on the go” to do so. Amidst this stillness, I believe I will be able to keep sight of what is important. The terrible pun would be to say this would be my 2020 vision.

Dwell

My second word is “dwell”. This feels the perfect way to guide how I settle in my new home and community with the definition “to become familiar with a place and feel happy and confident in it”.

Gradually I am shaping this as my home, while I trust, retaining respect and appreciation in the history of the home I have moved into. I am settling into a space which has an evident and warm history. While there is a natural pressure to quickly have all work finished and sit back, I am also happy with the gradual process that is necessitated. This gives me time to learn how I will settle into my new dwelling, bringing my eclectic collection of Asian, African and Scottish belongings and styles into this existing history. In particular, the well cared for garden contains so much history and life – plum, pear and apple trees, many flowers I do not know the name of, wild raspberries and gooseberries. A wise friend countered the main advice I had heard and counselled me “take time and sit in your garden, let it speak to you before you make any changes. It will tell you what to do”. Those words resonated powerfully. I am sure I will make some changes, but probably minor and these must be in keeping with the character of what is already in place. I can dwell in this space by being true to the garden and to myself. And wider afield, I am eager to make connections in this community. There is a book group, a writing group, a photography club and even links through a twinning arrangement. I look forward to dwelling in my community.

Glisten

My third word is “glisten”. It took me by surprise a little, as I had almost settled on either enlighten or illuminate when thinking of the wish to spend more time and energy shining a light on my creative pursuits. It was also articulating some of the wider context we find ourselves. In many ways these are times of polarity and negativity around us and it is important to have the courage to shine light in dark spaces. But then glisten arrived unexpectedly, and was perfect. It is more subtle, natural and everyday. It has the meaning of “shining with reflected light” and has an element of the ordinary and extraordinary about it. Most importantly, to me it emphasises cooperation and a relationship as two elements are needed (light and moisture) to make something glisten. Two simple, everyday elements that we overlook and take for granted, but which create something eye-catching and of wonder. How often are we taken aback by the twinkle of the sun on a frosty edged puddle, or the light captured in a raindrop? It is also about our attitude and approach. We all have light in us that shines, and means we all have the potential to make things glisten. This encourages me to be creative, solution focused and optimistic and to keep my eyes open for those tiny, extraordinary moments we can miss when our minds and thoughts are dark.

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Even in these short Scottish, winter days there are many opportunities for us to see that which glistens around us, and for us to be our own tiny light.

As the daylight starts to fade on this first day of the decade, I am ready to open up and gently place my three words for the year into the wide open world.

Still, dwell and glisten

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Happy New Year and may 2020 bring you everything you dream for.

Night time border crossings, mountain passes and Turkish tea

The days in Scotland are shortening rapidly, frost is taking a hold in the ground and there is a distant scent of snow in the air. The time is right to close my eyes and remember my long train journey when the days were long and light, and hats and scarves were resting in cupboards. It is time to pick up the story, and remember when I was safely on board the night train from Istanbul to Bucharest – the next part of the journey

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…Now confident that I was either on the right train, or in company that would help me find my way to my destination, I was able to relax into the 22 hour journey ahead. Well, to a certain extent – I knew from prior research and reading that we would arrive at the first border, leaving Turkey in the early hours of the morning and this would likely entail leaving the train to get our passports checked. Nonetheless, I settled comfortably into conversation of a sort with my travel companions.

Now confident that I was either on the right train, or n company that would help me find my way to my destination, I was able to relax into the 22 hour journey ahead. Well, to a certain extent – I knew from prior research and reading that we would arrive at the first border, leaving Turkey in the early hours of the morning and this would likely entail leaving the train to get our passports checked. Nonetheless, I settled comfortably into conversation of a sort with my travel companions.

How you like Istanbul?” my new friend enquired. Before I could respond, he told me very clearly that he had not liked Istanbul. He didn’t like the food, the train, the city was dirty and to top it all, his wife had insisted that they take the train. And he really didn’t like the train. It took too long and did not have food. Fortunately he had a supply of food and beer, so expected to survive the return journey. I told the couple that I was travelling all the way back to Scotland by train, which the husband had particular difficulty understanding. We continued to chat, and through the conversation I learned that he had travelled quite a bit through his work, which was connected with shipping – the couple came from Constanța on the Romanian coast. I said that I had lived in Asia for many years, and my new friend told me he had been to India. He didn’t like it at all. ”I stay four days. then finish. Very dirty, food not good, too hot. Never go back. Finish.” Somehow, my year in Africa came up in conversation. He had been to Africa too but couldn’t quite remember where. Not even the country. He didn’t like it there either. “I stay four days, do my work. Finish. I don’t go back ever. Very dirty, food not good. Finish”. It was some half an hour later, that in the middle of another conversation he paused and said with pride “Ahhh, Mobmassa. I go Mombassa, Afreeca. Finish.”. His wife was keen to go to New York, but he was less keen. I would love to know if they ever do go, and whether he likes it there.

The train departed on time, drawing gently out of Halkali in the dark. As well as a dearth of information and signage in the station there was also a complete lack of any shops so the only food I had with me was what I had brought with me in the form of nuts and seed snacks, water and some health bars. The Romanian couple told me that there was no catering at all on the train. “No good”, the husband told me. “It’s not like that in Romania”, he announced.

It was only a few minutes later, our conductor came into the carriage with water, a pack of cheese biscuits and a small carton of apricot juice for each of us. I now had a small feast to see me through the journey.

Not long after 10 pm, the train slowed and came to a halt at some kind of station without a name. With no access to data for my phone (being out of the EU) I had no way of knowing where we were. There was no sign of the reason for our stop and the only sign of life that I could see was a dog snoozing on the platform. Every so often it would get up, wander along the platform a little, with a lolloping action due to the fact that it had only three legs, before finding another comfy spot, circling and settling there for a while.

Time ticked on, and there was continued sign of no activity or action accompanied by no information. My Romanian companion decided to go and investigate. I assumed that he was investigating the reason for our extended, unscheduled halt and a possible update on when we might get moving. He returned some ten minutes or so later, rather pleased with himself. The information he had gained during his investigation along the train was that there were empty carriages and it was unlikely that there would be any more passengers joining the sleeping compartments. He had earlier expressed his dissatisfaction that the compartments had four berths and there was a lack of privacy for him and his wife. Privacy would be the least of his concerns once I started my earthquake inducing snoring. I asked him if the conductor had mentioned when we might be leaving, at which he jumped up from his seat, and announced that he would go and find out. Now, he didn’t actually confirm that he was going to find out details about our stop, which was now approaching two hours, so I should not have been surprised when he returned and announced that he and his wife were moving to the empty carriage, as the conductor said it was ok!

They quickly gathered their bags, the beers and snacks and with a warm farewell, headed up the carriage towards their peaceful space for the night. For my part, I breathed out a sigh of relief too. While I had been expecting and prepared to share my sleeping quarters with up to three strangers, it was rather nice to have the whole compartment to myself. It was also nice to be able to get my bed made up and prepare to settle for a few hours until the first border crossing.

It was not long before the train started up again, and drew slowly out of the station, the sleepy, three legged dog watching us depart from his platform vantage point.

I knew that we had been stopped for over two hours, and that our arrival at the Turkish exit border was usually around 2 am so I prepared for a fitful sleep and to be woken abruptly when we were at the border. Indeed, it was nearly 4 am, after only very short episodes of light sleep that we rolled into yet another station, bright lights blazing. There was a knock at my cabin door

Lady, please get up. Go to Police Office, passport checking

As my compartment was right next to the conductor, and I realised at the very end of the train, I was first to be woken in this carriage. I confirmed that I was to leave my luggage, so just brought my small bag with essentials and valuables and headed out into the heavy night air at Kapikule Station https://en.wikipedia.org/wiki/Kap%C4%B1kule_railway_station . I followed a few other passengers ahead of me who had been in the front of the train, under an underpass and onto the platform on the other side, as most of the other passengers were getting themselves out of their bunks, rubbing eyes and picking up their passports. Passengers with children were taken to the front of the queue in the sparse really police office and we all stood patiently in a line behind them while absolutely nothing happened. Eventually, I heard the welcome sound of a passport stamp on paper, and the line started to move slowly. Before long, I was leaving the counter with a Turkish exit stamp in my passport, and I headed back to the other platform and my comfortable berth. Only when I got back on the train, did I see a shop on the other side with neon lights announcing “duty free”. I was not in the slightest tempted, despite my curiosity, to see what interesting goods might be for sale in that little Aladdin’s cave.

I had forgotten that these border crossings take time. it was nearly 2 hours when we finally pulled out of Kapikule Station, officially in no man’s land between Turkey and Bulgaria. I had not expected my phone to come to life at that point with a message welcoming me to Greece! Looking closely at my large Europe map, I realised that we were travelling along a narrow strip of land which hugged Greece’s north eastern border as well as Turkey and Bulgaria.

Soon we were drawing into Svilengrad, the entry border into Bulgaria. To confirm our arrival, my phone chirped “Welcome to Bulgaria” at me “Great news! While you are in Bulgaria, you can use your plan minutes…” I can also use my internet, I thought. Great news indeed, as I checked my whereabouts with Google maps. Less good news was that it was just after 6 am with light slowly seeping into the sky, causing the crescent moon to fade. I had had very little sleep so far. I also had to be ready for the passport checking at this border. It was a while before the border guards came to my compartment and took my passport away with them. I always find that unsettling, worrying that it will never come back and either the train will leave and I am passportless, or worse, that I am stuck in some remote border town with no passport and no train! I am always a good worrier, and of course my passport came back to me before long, unstamped this time, but I was now officially in Bulgaria. An hour or so later, we were on our way into southern Bulgaria, and I settled down for a couple of hours of rest before I had to do some serious looking out of windows.

I managed to sleep until just after 9 am and looking outside I could see wispy clouds and wooded hillsides. Far too interesting to carry on sleeping. I treated myself to a breakfast of water, a cereal bar and a ration of cheese biscuits once I had visited the washroom. A gentle knock on the door, and the conductor asked me almost conspiratorially if I would like some Turkish tea. Tea? Hell, yes! He brought me a steaming glass of black tea, which needed the two accompanying sugars to soften its bitterness. Delicious, and very welcome.

I had now been on the train for almost 12 hours, and would cross Bulgaria from south to north, climbing and snaking through the Balkan mountains and towards the Danube, the frontier with Romania. The consistently hot, dry weather of Turkey had disappeared, to be replaced by sweeping cloud and rain showers as we passed through mountain stations.

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I had brought books with me to read, but they lay neglected beside my bags, only the Bulgaria Lonely planet being able to draw any attention from me. That is, when I could bring myself away from either staring out of the window, or following the route on my fold out map in just the same way as I had followed my journey 20 years earlier on the Trans Siberian railway. Google maps are convenient, but nothing can beat the experience of following a trail on a paper map.

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The day melted into images of hill stations, small villages, farming lands and orchards. Later in the afternoon, the conductor came to my compartment and handed me a strong black coffee. I rarely drink coffee, far preferring the aroma of freshly brewed coffee to the taste. His kindness was welcome, and I received the tumbler with thanks. It was possibly the strongest coffee I have ever tasted, and I sipped it slowly. I had soon had as much as I could drink without inducing palpitations and a week of insomnia, but could not bear the thought of the conductor finding that I had not finished it. I emptied the last of the coffee into an empty water bottle, and packed it away in my bag, not wanting the conductor’s kindness to be insulted. Later that evening I would pour it away, once safely out of sight in Bucharest.

There is always a sense of anticipation and nervousness when approaching an international border on a train, and I could feel this building as we traveled through the plains of northern Bulgaria towards the Danube. And soon we drew into Ruse Station. Again,I patiently waited for the border police to board the train to carry out the passport and customs checks. Again, the time gently moved forward, and again my passport disappeared, and again I pretended not to worry. The border police returned with a bundle of passports and handed them out to the conductor. Mine was not visible. And as the pile of passports shrank and disappeared, I tried to calm the sick worry and racing thoughts of being passportless on the border. I shared my worry with the conductor, so that the border guard knew before he stepped back on to the platform, that I was still without my passport. It was another twenty minutes or so before he returned with a smaller bundle of passports and of course mine was there. I don’t know why I torture myself so but I do. And I am rather good at it. There was probably a completely rational explanation – such as nationality and Schengen citizenship or not. I never found out what it was, but it did not really matter except as a lingering puzzle.

The passport and customs procedures complete, we finally drew out of Ruse, and towards the Danube. My friend, the conductor tapped on my door again. “Lady,” he said “after 5 minutes, look outside. It is very beautiful, the big river, the bridge for train and above, the bridge for cars”. We were approaching the Danube, the natural border with Romania and I had insider intel about the views. The carriages the other side of my carriage had been removed earlier as they were destined for Sofia and my carriage was the end of the train. The door was mostly glass, and provided a spectacular vantage point to view the scenes coming up. I stood poised as we started to move over the bridge, leaving Bulgarian soil, and approaching Romania.

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The late afternoon sun was sinking in the sky as we arrived into the Romanian border station of Giurgiu North and another set of passport and customs formalities. There seemed to be a lighter air in the train though, as the passengers, the conductor and even the border police knew we were approaching the last couple of hours of the journey. It seemed a quick and easy crossing and we were very soon on our way towards Bucharest.

I gathered my belongings, packed away my books and camera and readied myself to disembark as we approached Bucharest, memorising the details of my hotel so that I could make my way smoothly there. I had been on this train for 22 hours and it had proved to be more than a warm and welcoming home. I stepped off the train, onto the platform of a new country, with a warmth and confidence that had not been with me when I boarded. This had been the part of the journey which had most worried me, and it had been a delight. I had much to look forward to after a few days rest in Romania when I would take the next part of my journey, with the Voldemort birthday already under my belt.

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Romanian border, 2 am, awaiting passport checks

Another Sunrise

This morning saw a light frost, miniature ice shardlets glistening in the first rays of sunlight. I closed the door behind me, leaving a flower shadow painted on the wall by the morning light.
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Under a keen, blue sky, I passed cropped fields of sandy coloured stubble with their scatterings of hay bales, punctuated by deepening reds and rusts of the changing leaves. A Scottish autumn at its very best.
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It was not like this ten years ago today. I was half a world away, if not a whole world. It was the end of a long and especially heavy monsoon and the Yangon I left behind was lush as the late afternoon flight lifted into the sky. An hour later, the sun was glowing red as it rested on the Bangkok horizon, pausing before it slipped out of view. Silently marking the end of another day, and another era.

It was late that evening when I heard the words that were to take life in an unexpected and unwanted direction. “This is highly suspicious of cancer” Dr W gently told me.

Ten years ago, this very day. Those words have echoed in my ears ever since.

There have been numerous sunsets and sunrises since that day, each one different and each one heralding an unknown day or night ahead. Some cloudier days when the sun has been hidden, and some bright skies like this morning when the sunlight throws promise and optimism on the coming day. This chimes somewhat with the path that life has taken since, and of course, before then. Some sunnier, promising sunrises and gentle, rosy sunsets. Other days, a stormy sky, hiding the sun or gloomy, troubled clouds shaping the mood of the day ahead and the challenges and surprises that arrive in our path.

On this significant Landmark Day, I am thankful to be here, and thankful to see the sun rise and set on an ordinary, extraordinary day.

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