A breath of fresh air

Words are still few, as I absorb the past days and weeks.  My break was just what the body and soul had craved.

I walked for miles in sleet, hail, sunshine and blustery wind, dined on freshly caught west of Scotland seafood in “Local Hero” style settings, found myself stranded “over the sea to Skye” when the ferry broke down, wandered along the silver sands of Morar, spotted seals bobbing around in the choppy waves in the bay and got lost on the highly straightforward circular walk around Mallaig.  And weirdly Twang Arm behaved, usually it squeals when I walk any distance, yet it seemed to understand that now was not the time to cause grief.  There was enough already.

Stranded on Skye

Of course there are many photographs.  Many dreadful images as I failed to master the sophisticated functions of my fancy new camera.  Many images, ready for the delete button as I experimented with my new acquisition.  Being surrounded by such incredible natural beauty though, has ensured that there are some memorable images which I will organise and share these in the coming days.

Most significantly though, I was repeatedly made aware that I was surrounded by regrowth and renewal.  Tiny buds on the trees,  little shoots of grasses pushing through the ground, delighted white fluffy lambs appearing freshly laundered as they scampered around the hillsides, prolific spring daffodil bulbs and new wild flowers shivering in the winds.

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Reminding me of the precarious balance that is life and death.

 

Shifting Focus

These are strange days, ones of some kind of unseen transition.  A transition in the emotional sense. I am caught off-guard by unexpected tears, prompted by something unknown yet powerful. I feel an abrupt shift in my foundations.  The psychological rock upon which I stand has been shaken and I find myself stumbling, a little uncertain and unclear of my path. Alone yet not alone, surrounded by love and support.

So I am shifting my focus a little.  I am heading away for a couple of days of solitude and reflection to stay at the north western coast of Scotland. I will breathe in the wild blustery air, listen to the sea,  watch the birds, gaze at the wild flowers as they peep up through the ground seeking out the springtime sun and absorb the healing atmosphere.

I will also take my new camera.  I will see if I can persuade it to share its secrets and I will try and work out how to use it to capture a fair impression of what I hope to see.

This is a fitting time to change my background image, and I am replacing the previous image of the woman in Yangon with an image of Scotland’s wild west coast, looking back to the island where my father rests.

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Journey

Last August I wrote about celebrating the ordinary. This is particularly pertinent and poignant right now as I have returned to Scotland, for the reasons alluded to in that post.IMG_4153

In this intense and difficult time of grief and loss words are few for the moment, but to repeat what I said at that time:

“But times are changing, my future visits to the island unsure and my long breaks there unlikely in the same way. I will have to rely on memories and the many photographs……..

Celebrate the ordinary today, because tomorrow may be different.”

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And indeed it is.

 

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And the Big Man said………..

This is a little late in posting, because I found myself, as always after the checks, totally spent, emotionally and physically.  I have been really nervous about this latest round of checks.  Probably a deal more nervous than I would care to confess, particularly to myself.   On top of the anxiety, the inability to plan beyond a few weeks has brought a strain that has been constant. That anxiety has been fed both by my own health, as well as the ongoing family situation.  All in all, exhausting and wearing.

As usual, and based on the experience of recent months, I have refused to book any travel or make any plans for immediately after the checks.  I have had to rearrange or cancel travel too often and it feels as if I am tempting fate if I do book travel.

As usual, I had to fast from midnight before heading into the hospital for the blood draws and the start of the whole check process, on Thursday.  Before I left, I had a few minutes online to make sure there was no untoward news from home.  I start and end every day in that way.  There was nothing from Scotland, but I was terribly saddened to learn that yet another woman, Donna Peach, whose blog I follow, has been taken by breast cancer. As her husband told us using her own words, she had danced into the light.  The fact that she is the third person I know personally within less than three weeks to be stolen by cancer, is a stark and unneeded reminder that this disease is aggressive and unpredictable.  Seeing the sad news of Donna’s death hit me additionally hard on the morning of my own checks, as I selfishly felt myself interpreting this as a “sign”, which did not bode well for the day.

So I am very happy to report that as far as my own checks are concerned, it is good news.  And for once no little provisos it seems.  I have been dancing around NED these past months and he has been almost there but not quite.  I did not quite get the clear “we see No Evidence of Disease”.  Rather, I have had these little snippets of “hmm, it is probably not anything sinister but…” There is a huge difference between NED and not quite NED and it is very hard to communicate how different they are.  In the same way there is a huge difference between No Evidence of Disease, and Evidence of NO Disease.  And that is what would make life look very different.  That is a discussion for another day.

These checks involved the usual bloods, prods and an unseasonal bonus ultrasound which pegged out a number of little shapes.  I almost prefer not being able to see a screen as I am always compelled to look and analyse.  I even seemed to get a discount, perhaps for good behaviour, or more likely for being a frequent flyer and clocking out so many hospital miles!

My surgeon examined me thoroughly, reviewing the ultrasound and saw nothing to be concerned about, noting a number of small cysts, and sent me packing.  Not before he admired my toenail colours though.  I told him that this was my auspicious colour and therefore I had a clear expectation that the checks would go well!

auspicious toes

Then I saw the Big Man, Dr W2.  Again a lot of prodding, and questions about my fall.  I blamed Tamoxifen for my clumsy toes, to which he countered, “You’re not on Tamoxifen any more”.  I explained that I meant Taxotere and the neuropathy which has never entirely disappeared and left me with clumsy feet. As well as clear memory and confusion issues which I had just demonstrated unintentionally!

The upshot of the bloodwork is that, although my tumour markers are still a bit high, they are not rising.  One of the reasons I was especially anxious about these checks is because it would provide three tumour marker readings.  And three results will show the start of any trend rather than one result out of context, or an A to B result.  If you want details we are talking readings of 30.2 then 27.8 and now 30.  So this shows relative stability and not a rapid increase.  The fact that is above the reference range (or “normal”) is quite probably related to taking warfarin.

He also commented on the toenails!  Note to self – get the same colour next time, it seems to work!  The biggest indicator of the day came from the words of the Big Man (my oncologist) himself.  He told me that he wants to see me again in SIX months.  Not three months which I had been expecting to hear.  Which I had not even dared to hope that he might say. No he clearly said SIX months and calculated the meds I would need for that length of time. Six delicious long months.  This means that I can start to think about planning my life again.  This is a biggie, as I had already progressed onto six monthly checks nearly two years ago, and then the embolism followed by the raised tumour markers meant that I was called more often.  It felt like a huge step backwards at that time.  So this progression to six months is a Big Deal and hearing those magic words made me realise just how huge it has been in my head.

The checks were tough for another reason.  For almost as long as I can remember, my friend and I had planned our checks for the same time, so that we could support each other and be naughty cancer rebels in the waiting rooms. We have both been through unexpected extra scans, and scares and know how to be there without either dramatizing or trivialising what it is like.  She was not with me this time.  She has moved out of the region and we are both now going through these in our separate ways, still supporting each other online and equally outrageously.  I missed her far more than I had realised I would.  And when I got back to the comfort of my room later, I found myself weeping unexpectedly.

So the headline, in the words of the Big Man is “come back in six months”.  Not three months, not tomorrow, but six months. Six. Long. Months.

I now have to buy a new suitcase, to replace the one which was damaged in the return journey from Scotland.  I will make sure it is big enough to stowaway NED and keep him locked in captivity for as long as I can keep him there!

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And in the meantime, I can focus on the important things, especially when they are images created by and bathed in the soft light of the late afternoon sun. And particularly when they are captured by my New Camera.  And that is another happy story for another day. 🙂

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

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

Back again soon, for sure.

Touch down and out of touch

I love the light, late midsummer nights in Scotland.  As my flight took off from Amsterdam just over a week ago, the sun was nestling on the horizon and sinking slowly from view.  As we travelled northwards, the sun rose steadily and by the time we touched down in Edinburgh 90 minutes later, it was again touching the horizon.

I always find it ironic that although I am in a super speedy internet space, time online is very limited.  This visit is one where I am spending a good deal of time either on the road (or rails), with family, and keeping my father company as he continues his medical path.  I am pushed physically as well as emotionally as a seemingly innocent mosquito bite which I brought with me from Yangon, has caused trouble and pain but finally seems to be on the mend.

In the meantime half written blog posts are cluttering my drafts folder and my mind,  random thoughts captured and preserved until they can be developed and processed.  Geographically nearer but somewhat out of touch …………

Spooked at Halloween

Halloween is upon us, the time for ghosts and vampires, pumpkins and dressing up.  In Scotland there are a variety of traditional Halloween activities for children.  These include “guising” (a bit like trick or treat, this involves dressing up and going round the doors, singing a song, reciting a poem or telling a joke in return for money, monkey nuts and sweets),  “dooking for apples” (ducking into a basin of water to catch an apple in your teeth) and trying to eat a treacle scone dangling from a piece of string!  Our version of the pumpkin lantern is the turnip lantern, though thanks to globalisation and greater availability of pumpkins, turnips are seen less often than the  pumpkin versions.  And it is a darn site easier to make a pumpkin lantern – have you ever tried gouging out a tough turnip!

No Halloween is complete without ghosts.  Don’t tell anyone, but my hubby is afraid of ghosts.  I mean really afraid of ghosts.  I didn’t realise just how deep a fear it was, until one evening, when our conversation turned to ghosts.  It was a bit reminiscent of childhood when you tell each other ghost stores, and terrify each other but are still compelled to recount the scariest things you have heard.  Well hubby alarmed himself so much (and most of the ghost stories were his) that he was too scared to venture into the darkness of the bedroom on his own!  I had to go in advance and turn on every light possible.  And give the room a thorough checking over for anything spooky or suspicious before he allowed himself to be led there!


I realised, when living in Nepal, that hubby is not alone is this abject fear of ghosts, or “bhoot” as they are called across large parts of the sub continent.   In villages when I was travelling I was told not to go out at night for the paths were dangerous.  I thought they were warning me because the villages were on such steep landscape, but no, it was due to the risk of being accosted by  “drunks and ghosts”!  Across India and Nepal “bhoots” are highly feared.  Wikipedia tells us that Bhoots have backward facing feet, float above the ground as the earth is sacred, they cast no shadows, and speak with a nasal twang.  They often lurk on specific trees and prefer to appear in white clothing.  Often they haunt specific houses, often places where they were killed or which have some other significance to the bhoot.

When my sister in law came to visit us in Yangon she brought her Nepali fear of ghosts with her and expressed fear at sleeping in one of the spare rooms.  She was reassured in a highly matter of fact tone by our friend who said with surprise “Ghost?  But this house doesn’t have one”.  In Myanmar, there are Nat spirits rather than the ghosts we are more familiar with, and shrines are ubiquitous.  When we first arrived, the housekeeper in our interim staff house was glad to learn that we did not eat pork. She explained that the nat which lived in that house, did not like pork and if it was eaten in the house it would cause arguments.

I am probably less afraid than hubby of ghosts, although I do get a bit “spooked” with discussions or TV programmes about ghosts, the paranormal and such “other worldly” or apparently unexplainable phenomena.  But that fear is nothing in comparison with my number one fear.  The new one which came as a gift with my diagnosis.

The fear of recurrence.

This is something I discuss regularly, for example in this “Fear Factor” post.  Halloween might mark the end of the designated Breast Cancer Awareness Month, but it does not mean an end to the fear of recurrence.  Once diagnosed, every month is Breast Cancer Awareness Month.  For those living with metastatic disease, every minute of every day means Breast Cancer Awareness.   No matter how far we are from our diagnosis, fear is not far away.

It is sometimes hard for others to understand that fear is a part of our lives. This is not about attitude or being positive, it is a reality which we manage in our lives and balance with vigilance about our health.  It is not something which we can forget as we move out of October.

We all have fears.  Whether our fear is of ghosts, spiders, heights or metastatic cancer, that fear is real and valid.  No matter the basis, we have to respect each other’s fears.

Auld claithes (old clothes), porridge and blogging – a relation of “new normal”?

I was back in Bangkok on Tuesday morning, on the homeward leg of my long leave, and waiting to see my endocrinologist, Dr A after four weeks on the road.  The metaphorical road that is, as well as the physical one.  My leave had seen me trail from Yangon, to Bangkok, to all corners of the UK – London, Bristol, West Lothian, Oban/Lismore, London, back via Bangkok to Siem Reap and back to Bangkok.  I had travelled on aeroplanes, buses, boats, trains, cars, ferries, underground trains and tuk tuks.

After my stop off in Bangkok to see Dr A and attempt to pack all of the bits and pieces I had accumulated over the course of the journey, I would return to home in Yangon.  Back to  “auld claithes and porridge”.  This is an expression from old Scots and it translates directly, as old clothes and porridge.  It essentially means that holidays are over and it’s time to get back to work.  After my gadding about the world, it certainly fits!

One of the tasks I had successfully accomplished on my travels was to replace my elderly and now sadly incapable laptop with a newer, young and highly attractive model from which I have since been inseparable.  Along with good internet connections.  So on Tuesday morning, I was sitting in the hospital waiting area, with my sleek notebook, rather excited as I knew that it was the set time for the weekly Twitter discussion “#bcsm” (which I think stands for Breast Cancer Social Media – but perhaps not, I am happy to be corrected) .  This discussion takes place over one hour on Mondays at 9 pm EST (US time zone).  Because of the time difference I have not yet managed to connect with the discussion but often saw the wrap up points.  I was delighted that I should be able to join the discussion for a good part of the hour while waiting for my appointment.  It took me a bit of time to work out the technicals to enable me to join the broader discussion, and remain able to post, but once able to do that I found myself joining in with a big smile across my face.  It was so good to be involved in this live and lively discussion.

This week the topic for discussion was on “”Is there a new normal after treatment is over?”  There are a number of questions in here, including recognition of the often unexpected strangeness of the period after the acute and heavy cancer treatment has finished, when everyone expects you to be “back to normal” and “all clear” from cancer.  Within the questions of whether there is such a thing as a “new normal” there is the squirming “can of worms” over how to label such a “new normal”.  There are as many takes on these points as there are feisty Bloggesses and Tweeters, each view as valid as the next and it was, indeed a lively and spirited discussion.

I have been unable to come up with a term which I feel comfortable with for the “new normal”.  Additionally, my own take on this is that it misses the very thing which we fear and which plays a large part in defining this strange time. Recurrence and metastasis.  There, I have said it out loud.  Living with and managing this fear is something we have to learn to do.  Of course that is part of a “new normal”.  This is fine so far, but the bit I have difficulty with is that for those who have recurrence and/or mets, or who have been Stage 4 from diagnosis, we are not talking about a period “post treatment”.  Treatment is a part of life.  although I am not in that situation myself, it doesn’t feel quite right.  So for me, the debate continues while a variety of vocabulary and language is shared.

But that is just my take on it.  I know that there are as many views on this as there are women diagnosed with breast cancer.  And no one is wrong, we are just different and feel differently.  As with everything else, it comes down to respect of each other’s view points.

I find that I tend to see everything now through a different lens – the breast cancer lens, and this influences and affects planning and thinking in pretty much everything I do.  Up to now the nearest I have come to finding something to describe this time, perhaps influenced by working in the NGO world, is an acronym!  It is simply LPD – Life Post Diagnosis.  The defining moment for me was diagnosis, and nothing can turn the clock back nor revert to that time before hearing those words.

As I return home, and prepare to return to the routine of life, work, blogging I cannot help but ponder on the differences and similarities between the “auld claithes and porridge” and the ongoing LPD.

The underlying sentiment of “auld claithes and porridge” is that it represents a return to “normality” after a time of holiday, leisure, pleasure and perhaps even decadence. Well that certainly applies to my period of leave and there is plenty of photographic evidence to illustrate the point on the sister blog!  It often implies an upcoming period of frugality to compensate for overspending too!  Pretty much the opposite is true for that post treatment life.  After the mental, emotional and physical ordeal, we yearn for the chance to get back to normal.  And that is when it hits us that Life will never be the same again, that as we move forward, we tread rather differently and what we once considered “normal” is simply no longer there.  We have to find our space and our place.

Unsurprisingly there were many points of view expressed during the  Twitter discussion.  Happily the #bcsm session wrapped up just as I was called for my appointment to see Dr A. My consultation was fairly brief – bloodwork good, thyroid stabilised with the meds, sugar stable and not yet in the diabetic range, and cholesterol excellent (surprising given the number of eggs I have eaten in the last month.  One of the hazards of travel and breakfasting in different places).  Dr A was very happy with my progress, and signed me off for 6 months!  Now that does really help me feel as if I am moving forward.

I have returned to Yangon feeling refreshed and revitalised.  I have enjoyed special time with people close to me, have explored and adventured, finding most of all a confidence and strength I feared I had lost.  Now it is time to pick up the reins of regular life, Life  Post, and indeed Beyond, Diagnosis.  A critical element of of my LPD is without doubt the online engagement I depend on, so perhaps my version would have to be “auld claithes and blogging!”

Anticipation and reflection

“Harmony, Vitality and Adventure”

When I chose these as my guiding words for the year, I didn’t realise how often I would refer to them.  And here I go again!

My visit to the UK was over in a flash, and although I managed to get around the country and see my family, there was little time for reflection or relaxation.  I know that is the deal though, I have been overseas long enough to know that home leave is home leave and not a holiday. The special time with family and friends is accompanied by a crazy logistics-fest to get around the country and spend time with people.  I also find that the backlog of various tasks such as bank stuff, correspondence, immunisations, hair colouring (note how I just slipped that in there – oh yes, that is a subject for its own post), phone conversations and stocking up on various essentials and goodies which I can’t get my hands on is always takes far more time consuming than I realise.  Every year!

This time my visit was shorter, and I was sad that I was not able to connect with many special people.  However, this year was different to the general home leave schedule.  Two years ago I did not manage to get back on home leave, for a number of reasons.  The biggest one being the unplanned encounter with Breast Cancer.  Nuff said!  Last year, my visit was at the end of the treatment  and for the first time I did not even attempt to get around the country as much as I usually do and spent a good bit of time on a remote Scottish island.  Looking back, I realise how frail I was and how “cancery” I probably looked.  Being bald helped that image.

So this year has been very different.  Having my checks just before the visit gave me a wonderful peace of mind before travelling.  I also felt confident about travelling on my own.  In fact the main challenges I have found have been relatively minor.  There is the continual “faulty thermostat” issue – being too hot, then too cold, then too hot again (repeat ad infinitum….) and the yucky crumbly nails.  The faulty thermostat is no different in cooler climes I have discovered.  I just have more layers to remove and replace and often in more crowded spaces! I think the nails have probably been affected by the travelling – carrying bags, and putting my hands into handbags for passport, purse etc has resulted in 8 of my nails being quite badly damaged.  That is 8 of my fingernails, and not including toenails, so quite a high proportion!  One thumbnail has been particularly damaged and tore off eventually far enough down to cause bleeding.  Not nice.  I am not sure whether this is still the after effects of chemo, effects from Tamoxifen or both.  In any case, when you add the travelling factor, it has resulted in quite a combo.

So I flew back to Bangkok on Friday/Saturday and when I woke up this morning I had absolutely no idea where I was, what day of the week it was and what time of night or day it might be.  Slowly it came to me that I am in Siem Reap, Cambodia, for the first time in my life.  Despite living in the region for many years, and having had a fascination to come here, I have never quite got here.  Till now.

I am in that beautiful phase of “anticipation” now with a new place to explore and discover.  Planning for and anticipating the coming days for jungles and rainforest temples.  Enjoying the harmony of these surroundings and the break.  Feeling so much healthier and with a sense of real vitality.  And embarking on another adventure!