Expectations, great and ordinary.

Where have these past two years gone? We have completed two whole journeys around the sun. The same sun which has risen on 730 mornings and set again in the evening since 13 March 2020. The very day when I closed the door on the outside world.

The sun rises a little earlier each day as spring equinox approaches.

As the sun sinks this evening, I reflect on this day two years ago. I was on my way home from work, with my laptop and some hastily grabbed papers as I was expecting to be working from home for the following couple of weeks with Covid closing in on us. It was just over a week before the spring equinox, the sky was a translucent blue in the fading daylight as I made my way from the bus stop to my front door. 

Heading home on 13 March 2020

I was not long home before my phone rang. I remember that family conversation so clearly, the deep fear of the virus which was already tightening its grip around us meaning that I began my isolation a few days before the authorities formally closed our doors. That is not new, I have reflected on this before. 

As I wrote in April 2020 – “I arrived home from work … 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... 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.“

There was such uncertainty ahead. But on reflection I realise that did have some expectations. We had expectations that if we did catch Covid, then we would have some immunity in those very early days. There was a great deal of talk about vaccines taking time, but we had unquestionable confidence that we would see a vaccine at some point and that it would be the solution. I held the expectation that catching Covid would be almost certainly dire with my underlying and chronic health conditions. Another expectation was that as case numbers rose, they would surely fall as the peak of infections passed. However, the current case numbers are very high considering over two years have passed of the pandemic.

So it is strange to look back over the past two years which have both flown and dragged by, and look at how those expectations have measured up. Some have been surpassed, and some have surprised us. The vaccine has been a massive game changer, for those have access to them. While the global situation is one which is urgent and overlooked by too many, I am in that fortunate position to have had both doses, plus the booster. But aside that is the question of immunity. Not being an expert in this area, I have been shaken by the evolving realisation that immunity fades after infection, and also after the vaccines. Now we understand that the benefit of the vaccine is far more on reducing the severity of disease rather than transmission. Also, in those very early days, the variants had not appeared on our radars. Our expectations of new variants and mutations of the virus, with the unknown of how severe and transmissible these would be had yet to form.

Many of these expectations, I had not really acknowledged but they nestled in my mind. It is only when I pause at a milestone such as today, that I realise that I held so many.

When I wake tomorrow morning, on the first day of a third year since I closed my door, I will focus my expectations on the sunrises and sunsets and the spring growth in front of my eyes.

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.

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.

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.

It’s that time of the year, is it?

I remember being awestruck last year when the new jacaranda blossoms first started to show.  I had not realised that Yangon would be so colourful.  I had not expected the absolute riot of colour which the flame or flamboyant trees would bring to the city.  It was an unexpected and wonderful surprise.

It was particularly wonderful, because the reason I had not been expecting these wonders was because I had been in the midst of the heaviest part of the treatment the previous year.  The latter cycles of the eight rounds of chemo, which caused greater and greater restriction in how much I could get around.  This was followed by a long spell in Bangkok while I had the daily radiation zapping.  So I completely missed this gloriously colourful show around me.

This was just one of several unexpected pleasures I experienced this time last year.  Another surprise I had last year, was the unusual placing of a small table outside a neighbour’s gate, as I was leaving home for my dawn swim.  As I left on subsequent days, I saw this table with pots of food and the two neighbours sitting near their gate waiting patiently, and noticed a couple of tables outside nearby gates too.  There could only be one reason for this.  One of the most beautiful sights in the early mornings across the country, and in many other countries in the region as well, such as in Laos, is a long line of robed, barefoot monks as they walk through the streets to collect alms.  It is simply heart stopping.  And it was clear from the preparations that a new route had been introduced and a line of monks was clearly expected.  It was a good few days later before I finally saw the monks.  They passed our lane at the same time every day, and this was when I would usually be in the swimming pool.  By the time I would get back home, the tables were gone.  One day I was late, and there they were.  A long, line of silence, serenity and spirituality.  Every day after that I used to linger, just waiting to see a glimpse of the line of monks before my swim, but the minutes would tick on and I had to move on to the pool or I would risk missing my swim.  Or being very late for work!

And then one day, the table was gone.  I think it was probably after one of the full moon festivals but I am honest not completely sure.  I think that the monks came down our lane for about a month, but again I am not completely sure.  All  I know is that the tables were no longer there.

So last week, my spirits rose when I left for my daily swim and I saw the table again outside my neighbour’s gate.  Every day this week I would leave before the monks appeared, and the tables would be gone once I returned.  So that is why, on a Saturday morning, when usually I luxuriate in a longer sleep, I was up around the usual time.  Instead of getting my swimming things, though, I slipped out through our gate and waited in the quietness of the lane.

And it was without doubt worth making that extra effort, as I had a very humbling and spiritual start to the day.

A new day

It fascinates me that the sunrise is different every day.  The sun rises at a slightly different time, and on our cosy place on the planet (just south of the Tropic of Cancer), it creeps northwards along the horizon as the weeks move away from the shortest days in December towards the longer, lighter days.  Then, after the longest day, it creeps southwards again.  Every day, the sun’s appearance is different.  The cloud formations are different, the light varies and the place where the sun first starts its ascent over the skyline changes too.

I remember the first winter that I started my sunrise swim.  It was late November 2010 and I loved watching the sun peek over the horizon around 6.15 in the morning.  As we moved through December I would leave home in the dark, as the sky was just beginning to show the first tinges of light and on the shortest day it rose at 6.30.  After a few days away for Christmas that year, I resumed the early swims eagerly set for the sun to start rising earlier. To my bewilderment, it seemed to be getting darker in the mornings, rather thanlighter.  By the middle of January, I was no longer able to contain my puzzlement and resorted to good old Google.  I learned that in fact the sun does continue to rise later and later throughout January and even into February.  How bizarre, and how contradictory to the fundamental sciences I had learned.  How could it possibly be getting darker when we had passed the shortest day?

Thank heavens for the internet, because I am not sure how I would have solved this puzzle without it.  I discovered thanks to Time and Date which is a wonderful resource, that 21 December is the shortest day, according to the length of time between sunrise and sunset.  However, the fact that the sunset is progressively later (by a longer time than the later sunrise) the actual daylight time does gradually increase by a few seconds each day.  Phew – that’s complicated and difficult to explain.  However a glance at the sunrise/sunset times will enlighten (quite literally) those interested to understand this more clearly.

In addition to the gradual progression of sunrise times, the sun also moves in a northerly direction as the weeks progress.  We are now at the time of year where the sun’s northerly path along the horizon moves forward visibly.  I am at a different spot in the pool each day when I first see that characteristic deep red, glowing sun as it first reaches over the horizon.

And there is a magical point on that path when the sun rises at a point which is directly behind an ancient temple distant on the horizon.  As it rises, it creates a dramatic silhouette of the temple against the soft light, reminiscent of a child’s night light.

It is a moment which quite simply takes my breath away.

In the Dark

There are not many times when I am silent on this blog and there are usually predictable reasons.  Firstly lack of, or slow, connectivity, which can happen here fairly regularly.  Or being out of town and being caught up with other work and activities.  Or, when something happens to worry me, like the wirple and I retreat into a shell of introspection and fear.  It might even be hidden and disguised underneath a chirpy upbeat post.  But I tend not to open up about whatever it is until after I know what it is about.

I returned from my field trip two weeks ago, tired, in need of a good hot shower, and with a standard issue stomach upset.  But that was insignificant. I felt inspired, motivated and refreshed from my visit to projects and communities.  It is an enormous boost, both personally and professionally.

So when, two days after getting back I suddenly developed severe pain in Twang Am and right across my upper chest, I was not happy. And let’s be honest, I was frightened.  The pain was horrible overnight and I resorted to taking pain meds which is something I tend to avoid for some reason, unless pain becomes really troublesome.

The past two weeks has seen me go through a time of pain, fear and worry and now that it appears to be easing, I feel that I can “come out” about it.

It is not clear what triggered the pain, even though the onset was sudden. I had been rattling about in the field, sitting for protracted lengths of time on floors, travelling for long hours on very bumpy tracks and in and out of boats and when that is coupled with an old lower spinal fracture from many years ago and fragility of upper chest following radiation and surgery trouble arises. I tend to compensate for the old fracture when I am sitting on the floor and find it uncomfortable to sit cross legged for too long.  This means that I often tend to lean on the other side, legs bent underneath me and taking all the weight on the opposite arm.  And that arm happens to be Twang Arm.  It looks as if Twang Arm has decided that it has been a bit on the quiet side for a while and it is time to squeal.

I consulted a different Doctor, Dr O.  Sadly (for me) Dr H has been posted to another country as part of an Asian Doctor shuffle and our new Doctor had not yet arrived.  But I know Dr O well, and he looked after me during the lost pneumonia days.  Whenever I bump into him in town he always comments on how good my hair is looking, considering I was completely bald when I first consulted him.  Appointments with Dr O are always fun, as his office is adorned with a variety of Tin Tin pieces of art. He examined me, and immediately diagnosed a problem with my thorax, probably as a result overcompensation for the older fracture.  He also noted some swelling on Twang Arm and thinks that it could be a touch of lympoedema.

But of course there was a not so hidden agenda item.  We both knew the reason why I was so frightened about this pain.  I told him where my mind had gone and he reassured me that this does not look like bone mets.  There, now I have said it out loud.  Dr O described the pain very accurately to me, and said that it was highly typical of thoracic pain.  I asked in at least three different ways about it being connected to Breast Cancer and in at least as many ways back, be told me he did not believe it to be connected.  He prescribed me a heap of painkilling drugs, including a shot in the rear and told me that it should improve considerably in a few days.  If it did not, then it would need further investigation, ideally through MRI as X Ray would be unlikely to give enough detail.

And of course that was very reassuring.  I left the surgery clutching my bags of meds and a tender rear.  But although it was reassuring at one level, I can’t say that my mind was immediately relieved.  I needed to see if the pain would subside, and if it did not, well it would need to be looked into.  And that took me to another whole swathe of fear.

Having an MRI is fine, but we all know that it would show up any nasties lurking as well as thorax or other problems.  And that is the thing.  It is not just about investigating that particular pain, it is the fact that I would need to prepare myself mentally and get my head in a space to handle whatever results it might show.  And that is what I find so hard.

In the days following the appointment with Dr O I took the pain meds religiously and it is hard to say what happened with the pain because it is hard to know what effect the pain meds were having.  By the weekend, I came to the end of the course and moved onto no pain meds.  The pain was still there, and still painful but it is hard to gauge the level of pain when it had been so severe before.  But it was certainly better than it had been, even if not as dramatically improved as I had wished for.

And now a week later, I am in much less discomfort.  The thorax pain is greatly improved, and tender now rather than take-your-breath-away agony.  However, Twang Arm is not so improved.  The thorax pain made it painful to swim so I rested for a few days until it felt that swimming was not aggravating it.  And it is clear that Twang Arm took full advantage of that time to crank up its discomfort.  There is not a great deal of visible swelling but it is very uncomfortable and I will need to get it checked out and get a plan of action to tackle its attack head on.

But at least my head is in a better, less dark space.  Following diagnosis we have a “two week” rule.  If there is unexplained pain or other potentially worrying symptom, that goes on for two weeks without improvement then it needs to get checked.  I saw Dr O almost right away due to the pain levels, and now I am at the two week point so it seems a good time to test the rule.  There is clearly a great improvement.  And as Dr H told me, a useful bench mark is the fact that “cancer pain and symptoms generally get worse not better”.

This darkness transports me right back to the time soon after diagnosis and the overwhelming feeling that something monumental had shifted in my world. I felt as if the certainty of the daily sunrise was a metaphor for the assurance I had had of my physical health.  Being confrontd with my mortality revealed a fundamental shift in my world.  This new cancer world felt akin to a world where the sunrise and daylight warmth were but memories.

In our world, the sun rises every morning.  It never fails.  We know we can completely rely on it.  We can be absolutely confident that the night sky will lighten and that the sun will appear over the horizon.  We can even be reasonably sure what time it will rise.  And moreso, we know it will do so every day without disappointment.  Some days are sunnier than others and we  can see the sun and that it did rise.  Some days are cloudier and the sun is not itself visible.  However, the very fact that it is daylight tells clearly that the sun did indeed rise.

So just imagine, if one day, unexpectedly the sun doesn’t rise.  The minutes tick towards the due dawn hour and the sky doesn’t lighten.  Can you imagine the disbelief as the sky stays stubbornly dark and realisation sinks in that the sun is not going to rise?  The world shifts into a dark and cold place.  Everything changes.  Everything fundamental which we take for granted suddenly shifts.  There is no daylight, no warmth, no growth and the colours all change.  There is not enough power and energy to illuminate our lives and maintain food sources. Humans are resilient and creative beings, however, with a strong urge and will to survive and with human creativity and incredible technology at our fingertips.  After the initial shock we can imagine that ways are developed of dealing with and adapting to a cold, dark world.  Life somehow continues.  Daylight and sunshine are but memories and we think with regret how much we took them for granted and lament that we did not value them more.  Despite the efforts to adjust and adapt though, life can never be the same again.  It can never go back to the way it was before.

That is obviously an extreme and dramatic analogy, and massively oversimplified.   But there is something about a cancer diagnosis that felt very similar to me, however. Hearing those words “highly suspicious of cancer” shook me to the very core of my existence.  The sun at the centre of my universe had changed and my world suddenly looked very, very different.  Of course I would cope though. I would readjust, I would recalibrate.  But I could never go back literally and figuratively.

This post diagnosis life does have its dark moments, with many prompts such as signs and symptoms which worry us, the fear of recurrence, persistent pain, the discomfort and restricted movement of Twang Arm, friends with metastatic cancer, the physical and visible scars of the treatments.  It is not a case of wallowing in this darkness, but it is important to know it is there and navigate our way through it as best we can.

This is one of the reasons my morning sunrise routine is so important to me.  It helps me to retain that sense of optimism through a very evident physical display of light and warmth.  And while my mind might not be completely freed from these black thoughts, they have been considerably weakened.  If the New Year brings continuation or worsening then I know what I need to do, but for now I am focusing on that improvement and making plans for a Christmas adventure.

Good Morning Yangon – no words needed

Middle ground

I am in a pretty good place right now.  Apart from kicking myself that I didn’t start this sunrise swimming strategy months ago, that is.

I have now reached the end of the second week of this dawn swimming and cannot believe how good I feel, despite having fewer hours sleep every night.  I am astounded at how much difference there is between an evening swim and a morning one.

I feel as if I have more energy – take that, Tamoxifen!  I hadn’t realised just now tired and fuzzy I was feeling all of the time.  I am still on a bit of a low peep but definitely feeling less tired.  Twang Arm is taking a bashing and it feels as if it is losing its grip (every pun intended 😉 ) – it is less painful and I am able to swim quite a bit faster than before.  More than anything else though, it is a great psychological boost and I find my mood lighter and motivation stronger with this different daily regime.

The timing is good too.  We are in a particularly frenetic period at work and I am finding it hard to keep my promise to myself about maintaining a healthy work life balance and this start to the day helps enormously.

However, I have to remember that I am still in that recovery phase and my body still marked from the ravages of the triathlon hell of cancer treatment.  It is difficult to communicate that though.  In this strange post treatment life, I feel that the rest of the world expects there to be only two states which I can be in – either ill or completely well.  There doesn’t seem to be an in-between.  Yet the reality is that I am physically still very much at an in-between stage.  I am well.  I am pretty strong. But I am not quite fully well.  The punishing months of chemo, surgery and radiation have really taken their toll on me physically.  I still have some neuropathy (numbness) in my fingers although it is improving.  My toes are still uncomfortable, numb and feel stiff and too big for my feet!  I have a horrible kind of deformed toenail where one of my toenails fell off and another is still a gross black colour.  My fingernails keep splitting.  I feel generally sluggish and slightly lethargic, and my thinking also feels a bit slower.  I have the side effects of Tamoxifen to add to that – perhaps that is the main cause of the sloth-like state.  Perhaps I should have a label round my neck which says “handle with care”?

So I feel that I am very much in a kind of middle ground, albeit a good middle ground, which is heading in the right direction.  But a middle ground nonetheless.   I’ll keep you posted on how that ground shifts as I am sure it will continue to do so.

Mornings

This is why it is worth that extra effort to drag myself out of bed – sunrise over the swimming pool.