After Words

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

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

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

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

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

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

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

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

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

It is what it is.

Sometimes even geckoes have to rant.

Thanks, but no thanks, cancer.

There are so many different ways of handling a cancer diagnosis.  There are more ways than there are people who have or have had cancer, in my view.  As each one of is individual, each approach is unique.  It might be similar to many others, but it is essentially unique.  Why more ways than people?  Because this varies even within ourselves.  Much depends on where we are in the cancer experience.  In the three years eight months and 22 days since I learned I had cancer, I have veered between the “WTF – Cancer??” to “warrior” to “cancer rebel” to “advocate and activist” to “inspiration” and many more.  Each is valid to the individual and to where they are in the experience.  What is not valid is suggesting that one approach is right and another wrong – each must be respected even if it very different to our own approach.

One approach is to see cancer as a gift. Diagnosis of a critical disease does often bring a sense of gratitude and an accompanying “carpe diem” pair of spectacles.  And that is fine, but the carpe diem is as far as it goes for me personally.  Thanks, but no thanks, cancer.

I was in a sound sleep the other night. I must have stirred a little, as I was pulled abruptly to my senses by a familiar tugging and tightening in my calf. Yet another leg cramp was forming. Much as I try to relax the muscles before it spasms, I can rarely prevent the cramp from taking hold.  I know that if I can get out of bed and straighten my leg with the floor underneath then it will help, but lifting my leg off the bed makes the cramp worse.  Sometimes I can put up with it, but other times the pain is so excruciating that I hear animal like noises coming deep from my gut.  It is agonising for me and distressing for hubby J as he is disturbed from his sleep and tries to help me relax the muscle. The cramp the other night was one of the worse I have ever had.  My calf was in a complete spasm and even my foot was locked like Barbie’s, – my toes splayed in different directions.  I tried to move off the bed but was completely unable.  It seemed like an eternity and took a horribly painful manoeuvre to get onto the floor and start to ease the cramp. I was finally able to hobble and the cramp slowly abated.

The spasm had been so severe though, that the pain stayed for several days.  These cramps are a likely side effect of Femara (Letrozole) which I have been on now for nearly a year, following the switch from Tamoxifen.

Throughout that following day, I walked as if I had just celebrated my 95^th birthday and was both immobile and incontinent.  My right leg was tender and painful from the cramping and it struck me just now much the Femara side effects have been getting progressively worse too.  I am increasingly stiff, move awkwardly and have pains in my elbows, fingers and both knees.  I yearn to be able to move freely and resent this debilitating impact on my wellbeing and the constraints on my mobility.  The days following this particular cramp session saw me walking very gingerly and awkwardly indeed.

Thanks, but no thanks, cancer.

There have been a number of unwanted “gains” from cancer – we are too familiar with Twang Arm, Captain Paranoia and of course the gaping void and long scar which is where my left breast used to be.  But there are many more.  Some are side effects of current medication, some are the after effects of the various treatments.  They are all unwelcome, but part of life.

Thanks, but no thanks, cancer.

I have a host of unexpected after effects – brittle and constantly breaking nails, highly sensitive soles of my feet, skin which reacts angrily to as much as a wrong look, or sticking plaster or stray hair, a digestive tract which remains sensitive following the ghastly gastric effects of chemo.  I still have the remnants of peripheral neuropathy in my finger tips (barely noticeable but just there) and my numb toes.  The numb toes which were the likely cause of my recent fall in March.  I often trip just walking around the house.  One of my colleagues recently remarked that I was now walking more clumsily.  I have difficulties with memory too, my personal memory card seems a little stale and has particular difficulty with numbers.  Finally “chemobrain”- a level of cognitive impairment “thanks” to chemotherapy which is now more recognised and understood to be very real.

Thanks, but no thanks, cancer.

One post diagnosis gain is the regime of daily meds I have to take.  Before cancer I used to pop one little blood pressure pill daily, to counter the family trait of high blood pressure which hit me suddenly when I hit the age of 40.  Now I have a whole colourful smorgasbord of meds throughout the day, some of which interact with each other, some which have side effects and which require another med.  Sigh.

The Smorgasbord

As soon as I wake, usually around 5.30 am I have to reach for med No 1.  I have to take a synthetic thyroid because I have zero thyroid function.  I have no thyroid function because chemo zapped it into non-existence.  I have to take two small tablets and then I usually get ready to head out for my swim and cycle. Around an hour and a half later, after breakfast I have the next round of treats.  I now take a combination of 2 meds to keep my blood pressure stable.  One of these interacts with the thyroid med so I need to leave at least an hour between the doses.  Very handy if my morning routine has to change for any reason, like travelling, working away or if I were to have a longer sleep at the weekend.  Fine.  In the evening, I have a supper and bedtime cocktail blend of warfarin and Femara.  The Femara has replaced Tamoxifen which tried to do away with me by clotting my lungs with a sprinkling of clottettes.   The warfarin is the other gift from that little embolic episode. And my nightcap is a massive horse-tablet sized calcium supplement to counteract the effects of Femara which likes to deplete calcium from my bones.

Thanks, but no thanks, cancer.

I did not exactly enjoy being on Tamoxifen.  Would anyone? I felt a general weariness and also had terrible leg cramps as well as the legendary hot flushes.  I was glad to wave good-bye to it though and had hoped that Femara might be a little gentler.  After all, Femara and even Letrozol sound like more pleasant names than Tamoxifen, surely?  Unfortunately not.  As I approach my first anniversary since the Femara – Gecko union, I have had to face up to the fact that I am gradually feeling worse and not better.  I have been putting up with joint pain and stiffness which has been gradually but clearly increasing.

Thanks, but no thanks, cancer.

I was due my regular blood draw for monitoring warfarin effectiveness and clottery levels this week, and finally decided just to ask Dr O about the worsening pain and stiffness.  As soon as I mentioned and gestured about the pain he sighed and said he was pretty sure it was Femara.  He said that he has a few patients on Femara and even the way we describe the pains is pretty much the same. He asked me how long I have been on it, and when I told him that I have had 3 years now on either Tamoxifen or Femara he screwed up his face and said that they were truly horrible meds and that he could not wait for me to get to the five year point and have “freedom”!  Which was incredibly encouraging to hear.  Partly the validation that he recognised how draining and debilitating these side effects are, but even more so, that perhaps even after a couple of years, that I might actually start to feel better.  I had not realised that I have been taking this misery for granted and had pretty much accepted subconsciously that it would continue and just get worse.  For ever.  He ran a few extra blood tests – just to make sure that he was not missing anything, so calcium levels, potassium and liver function were all checked.  And very happily, all came back nicely within the regular ranges.

However, he has recommended a Fish Oil supplement to help ease the joint pains.  Another colourful addition to the smorgasbord.  And that brings with it another consideration.  So many of the meds interact with each other they have to be carefully timed and it starts to get really complicated. The meds do not just interact with each other, but also with certain foods.  Warfarin is less effective when you take wonderful cancer-busting greens and other Vitamin K rich foods.  And other healthy foods like cranberry can cause haemorrhaging – all of which curtails nutrition options and takes so much control away from me in ensuring I have as healthy diet as possible.  So contradictory and counter-intuitive.

I also ranted on my Feisty Blue Gecko Facebook page that evening, just to see if I was alone and how others dealt with this.  I was again reassured that I am far from alone, and my weariness with the side effects was valid.

So I have to confess to being grumpy and crabbit at the moment.  I am so over this cancer crap, and the fact that I cannot sweep it to the side as if it had never happened.  And that is not beginning to take into the account the whole “No Evidence of Disease is not the same as Evidence of No Disease and this beast will continue to haunt and taunt me”,  but purely dealing with the realities of the here and now of life following diagnosis.

Don’t get me wrong.  I know I have a great deal to be thankful for and I AM truly thankful.  I know I make more effort to value time and carpe the diem.  I still make a “five sticky plan” for weekends, aim to maintain a work life balance as far as possible in this incredibly demanding context of change and more change, and play (subtly I hope 😉 ) the cancer card if that is too threatened.  I have a beautiful morning routine which is largely “thanks” to cancer in that I know that exercise is known to be a factor which can play a part in reducing recurrence.  I have my Wish Bucket full of starfish,  kangaroos and funky nail art, and an update on that is coming very soon too.

I am also planning an escapade.  The year has been one of my toughest, so a little escape for creative and healing time is planned next month.

And of course, cancer gives me HEAPS of material and thought which makes its way into blog posts!

So there are a number of things from the cancer experience which I acknowledge have had a positive influence. And apart from cancer, I have a great deal to be thankful for – living and working in this part of the world being just a starter.

But cancer?  No, I do not think the day will ever come when I could ever say “thank you” to cancer.

Who would have thought?

Who would have thought? 

As I write this, it is exactly four years since we were making that journey from Safdarjung in Delhi to the domestic airport.  We were clutching our nomadic essentials from an unexpectedly long stay in Delhi, along with a bundle of paperwork which included those precious visas.  The reason for our longer stay.

We were bound initially for Calcutta on a domestic flight and would arrive late in the evening.  We would then fly onwards to Bangkok on a three hour flight  departing in the early hours of the morning of the 18^th June.  We would have a ninety minute transfer in Bangkok airport before boarding the first flight of the day to Yangon, bleary eyed and with virtually no sleep.  We would arrive, those bleary eyes bug-like, in Yangon ready for the next chapter.

Who would have thought we would still be here four years later, in a very different and exciting Myanmar?

We knew that we would need to get used to certain changes, for example, that internet was difficult to access.  I had been blogging in India and Sri Lanka,  and recorded our farewell thoughts as we prepared to leave.

Who would have thought that I would not return to Delhi in at least four years?

Who would have known that life was about to take such an unexpected turn?

Who would have known that hidden away amongst our belongings and paperwork, I was concealing two tumours and conveying them safely to our new home?

Who would have known that I would find that writing my way through this would be such a critical lifeline?

Who would have known how many friends I would meet through this?

Of course we cannot know.  To paraphrase  Soren Kierkegaard- We might understand life more easily by looking back, but we have to live it looking forward, not knowing what is ahead.

So, four years later it is fascinating to look back and realise just how much the ground has shifted in so many ways.  When I read the original Feisty Blue Gecko, so many memories come back.  It is strange to read those words and feel a strange innocence, which we realise has been wrenched from us when we crossed that line in the sand.

How much has happened in these past four years.

Who would ever have thought?  And who would have known, indeed?

Moving on

Yangon’s landscape is rapidly changing.  The colours on the city’s trees are disappearing , washed away by the monsoon rains.  The rains have arrived, with a vengeance, pounding down frequently, waking me in the night.  Moody black clouds skit across the sky, dumping their weight of water on the country, turning roads into raging rivers within minutes.

The city is lush, vibrant and teeming with life.  We have two mynahs basking in the sun, on the grass between downpours.  Preening, puffing up their feathers, strutting off to find a new spot every few minutes, perfecting their song repertoire with chirruping vocal exercises. The nighttime racket of frogs, geckos and all manner of beasties is at times as loud as the rains themselves.

Our mynahs are just like this one

Monsoon has truly arrived.  And as the seasons move forward, so it is time for a new image as my background.

 

Resting raindrop

An image I never tire of is one like this, which stopped me in my tracks yesterday on the way home between showers. A monsoon gift, one perfect teardrop, resting peacefully on its leaf, unaware that it was already  shrinking and evaporating feeding the increasing humidity.

And that is the image I choose as we move on, forward with the seasons, surrounded by new life.

 

 

Within. Without.

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

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

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

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

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

Indeed.

Loss is something we experience from within.  Not without. 

Gradually adjusting to living without the person we have lost.

Shadows and reflections

After two full days of angry black clouds, pounding rains, the occasional breeze and a descending monsoonal dampness, the skies cleared at dawn this morning.  Shafts of low light poured in through gaps in hedges and trees, causing dramatic shadows and reflections.

Bright skies lighten the heaviest of hearts, and the morning swim and cycle bring a lightness to the rest of the day.

All is well with the world, with such a start to the day.

Bangkok – reflections and apologies

I have an apology to make.

In my defence, it has been an intense, stressful and exhausting week.  Physically, emotionally and everythingly.  But still, that is no excuse.  Just a smidgen more of care and attention, and I would have realised. And not made a few other bloopers too.

Monday was a long day.  The evening saw our writing group come together to wish our good friend Becky in Burma well as she moves on.  While burying at least my own head in the denial which accompanies the departures of dear friends.  There was little sleep, as I had a very early start on Tuesday and a 4.30 am departure to the airport for a short visit to Bangkok, crammed with meetings, discussions and tasks to do.  Plus it was the 49th day since my father’s death, which weighed heavily on my mind and heart.  The first flight of the day into Bangkok was on a smaller plane than the usual commuters, so took a little longer and flew at a lower altitude.  We landed pretty much on time, but not long before my first meeting.  With only carry on luggage, I swept through arrivals, zipped through immigration, stopped fleetingly at the ATM and belted down to the airport train link into town.  I arrived, late of course, and aching after dragging the bags across the city.  Even an mobile little carry on bag is wearisome when it has to be carted up and down stairs in such a warm and humid climate.  Never mind, meetings and discussions ensued, as did lunch and more discussions into the afternoon.  At some point I reached into my card wallet to pay for something, and immediately noticed something missing.  My bank card.  Now using bank cards is still a novelty and something I have not yet done in Myanmar, so my poor little card always suffers in Bangkok and is pleased to retire again when it returns home.  And here it was.  Or rather, wasn’t. It was missing.  My palms were sweating, hands shaking and mind racking back to the ATM transaction.  Yes, I had been in such a rush and so set on getting to my destination as soon as possible, that I had blindly left the card in the machine.  Any free minutes there might have been were spent on the phone to the bank, cancelling the card and trying to absorb the fact that a replacement can not be sent yet for security reasons.

The next day, Wednesday started with another early morning, and saw me departing on the Sky Train again to the next meetings.  Again with the carry on bag.  Again dragging it up and down the stairs and along the streets in the heat.  Immediately after the meeting, I was again back on the Sky Train and airport link and checking in for my return flight.  As I sank into the seats in the lounge waiting for my flight, I worked my way through emails and bits and pieces of work.  And in a rash moment, put up a quick Facebook update saying that  I seemed to be “back at the airport, after a crazy 17 hours in Bangkok, bracing for more of the same……….“.  Well, first of all I can’t count and in my exhausted state did not realise that I had been in Bangkok for much longer.  For a whole 30 hours in fact.  And the “more of the same” referred to a gruelling schedule awaiting me on my return.  I was soon boarding, travelling back and finally back home I collapsed into my chair with a very much needed mug of tea later that evening.

When I later flitted online, before sleeping, I realised that my rash update had brought a swathe of panic and concern.  Unexpected, rushed visits to Bangkok are indelibly associated with one thing.  The cancery thing. And family and friends were seeking urgent clarification.

Happily I was able to reassure this time.  But it brought home abruptly to me yet again, that once that line in the sand has been crossed, there has been a shift.  That shift is very much in our own perspective, but also ripples out not so gently to those close to us.  A simple fly-in fly-out visit to Bangkok had turned into a major panic.  All about cancer.

So I have an apology to make. I am sorry that a lack of thought on my part, brought worry and distress to people who care.  I am sorry that they had to go through that unnecessarily. But do you know what?  I am not going to take all the responsibility for that on my own shoulders .  No, because there is one nasty element which is at the root of it all.  And that is cancer.  Trying to raise its ugly head and revive fear and distress.

And I have yet to hear any apology forthcoming from cancer in any form whatsoever.