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.

buzzy

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.

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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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Default Getaway

Just over a week ago, we celebrated the full moon festival of Tazaungmon in Myanmar. Throughout the wettest days of the monsoon, between the July and the October full moons of Waso and Thadingyut, there is a period which is often called  “Buddhist Lent” in Myanmar. During this period, it is usual not to begin new ventures – not to start a new job or move house and not to get married. At the Thadingyut Full Moon (usually in October) there is a great sense of festivity and the city is bathed in lights and candles. The temples are packed and shops full of gift packs of monk robes and appropriate gifts.  The night sky is punctuated with lanterns floating upwards.

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The Tazaungmon full moon, framed by traditional shades

The whole month following Thadindgyut has a festive air, and as the next full moon, Tazaungmon approaches we see preparations for this festival. At the end of our lane a stall appears, with wooden frames where people pin brand new 1000 Kyat notes and other donations.

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tazaungmon blog 1tazaungmon blog 3At various times, these are wheeled around the lanes and streets. I looked up one Sunday morning when I heard some lively music blaring from a megaphone, and saw a line of money trees and umbrellas passing along above the hedge outside. Quite surreal.

tazaungmon 4Last year I even saw a car with money pasted all over it, on its way to the temple to offer its donation.

tazaungmon blog 4This year Tazaungmon fell on a Thursday. Which brought the opportunity of taking a day’s leave on the Friday and making a long weekend of it. Rainy season is usually behind us by this time which makes flying less of an ordeal for me and I could feel a relaxing weekend at the beach calling to me. A booking was quickly made and I continued to work flat out, secure in the knowledge that a peaceful break was ahead.

However, rainy season had decided to continue a little mischief and on the Tuesday we had some torrential downpours. By Wednesday morning, there was no break in the rains and the sky heavy and grey. This was far more like a Scottish November day than a Myanmar one! I had to visit the Clinic for my regular blood check and the streets were again waterlogged. I was glad I was not flying that day and relieved that there were 24 hours before my flight.

When I returned from the clinic things took a turn for the unexpected and unwelcome. Firstly I received a text message alerting me that a friend was considering cancelling their seaside break due to a weather system developing in the Bay of Bengal. At almost the same time, I received an email alert about the possibility of a tropical storm or cyclone developing. My stomach flipped. Partly out of fear (flying in stormy weather, danger if the system were to develop and were to head in our direction) and partly from anger at the injustice of my badly needed break being in jeopardy.

I desperately tried to get any information and advice, but it was consistently inconsistent! The storm was expected to weaken, or strengthen. It might head towards Myanmar or it might decide to tootle off towards India. Some folks were cancelling and others were pushing ahead with plans. I was utterly incapacitated and had less than 24 hours to make a decision.

Now I am not the world’s most decisive person at the best of times, and in this instance I excelled myself. I did not want to make myself miserable and anxious by going ahead, but nor did I want to make myself miserable and resentful by cancelling. And the crystal ball continued to taunt me with its lack of information.

Hence, on the Thursday morning, with the torrential rain continued to batter down outside, and a sky promising plenty more, I was perched on the end of my bed only two hours from the flight’s departure. I had hardly slept, had not yet showered, breakfasted or even dressed and was still nowhere near making that decision. The fact that everywhere was closed for the holiday did not help, and the only information I could glean suggested that the while the storm was strengthening it was predicted to head westwards, India-bound. Ironically I had persuaded a friend to join me at the beach, and now the situation was reversed as she encouraged me not to cancel.

I had nothing to lose and no further information, so within half an hour had finished packing my little bag (no point in packing the sunscreen or sunhat though), showered, dressed, breakfasted and was putting my umbrella in my bag and throwing on my raincoat to head to the airport and see if the flights were running.

The streets were quieter than I had expected, in terms of traffic,  apart from a few Tazaungmon trucks with Gangnam Style belting out from massive speakers draped with plastic sheeting and filled with young folks drenched and dancing, seemingly oblivious to the rains and their dripping clothing.

tazaungmon blog 6There was mayhem at the airport, the floors were slippery and there were crowds of people. I headed towards the check-in desk, pleading to the invisible that the flight would be cancelled. I had seen a forecast of rains and thunderstorms and hate flying in these conditions.

The fates had decided otherwise and when I approached the desk, I was asked where I was flying to. When I replied I was escorted immediately to the front and my bag taken to be weighed.

But will the flight be all right?” I asked.

Oh yes, it’s a new aircraft” was the reply.

But the weather………”

Fine in Thandwe. The bad weather is here in Yangon only

And I realised I had a boarding card in my hand and my bag was being wheeled off on its own through security.

And so, it happened that I was on my way by default. The departures area was packed and many flights delayed, which did nothing to calm my agitated state. The ground staff from the airline I was travelling wore purple t-shirts so it was clear that one of the two flights they were running would be departing soon and sure enough, only a few minutes late, our flight was called. Getting up and moving to the departure gate reminded me of going to chemo. There was no way I wanted to be heading, but when bidden I would follow like a puppy. The rains were showing no sign of abating, and as the bus pulled up beside the aircraft we were met by a guard of honour formed by a line of airline-branded umbrellas. And then I was on the plane, questioning my lack of gall.

Take-off was predictably slithery but soon we were levelling off at 16,000 feet and travelling through a thick sky, surreally reminiscent of the frothy top of a cappuccino. Happily I had requested a direct flight (there is another long story in there – suffice to say that many flights in Myanmar fly on a kind of circular route and might have two or even three stops before you reach your destination). A forty minute flight with no extra landings and take-offs was about as much as I could handle.

As we descended into Thandwe, the light suddenly brightened in the cabin and I realised we were no longer in thick cloud. Vibrant green paddy fields, and thick jungle punctuated by winding brown rivers were immediately below and in minutes we were touching down on a dry runway.

tazaungmon blog 5The sky was still angry and the usually azure sea was more grey than usual, but I had arrived and if truth be told, the flight had actually been fine. I did not need to worry about flying again for three whole days, by which time the storm would have decided what it was doing and where it was heading.

tazaungmon blog 7As it turned out, the storm did form into a cyclone and turned towards India, but weakened and fortunately did not cause as much damage and harm as it might have. Although the Friday at the beach continued to be cloudy, Saturday saw a dramatic transformation to blue skies and continuous sunshine matched with the realisation that it is never wise to make a decision about what to pack without being that bit flexible. I am happy in the shade, but still it would have been wise to have had sunscreen, and throughout the whole break my raincoat stayed in the room! The rest of the break passed uneventfully, which was exactly what I had been seeking, quietly reading, people watching, walking and swimming.

People watching people watching......

Watching people watching  ……

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ngapali 9tazaungmon blog 8

New beach behaviours - selfie snapping in the waves!

New beach behaviours – selfie snapping in the waves!

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Traditional beach decorum - sea-bathing fully clad - these women were squealing with delight every time a wave washed over them!

Traditional beach decorum – sea-bathing fully clad – these women were squealing with delight every time a wave washed over them!

tazaungmon blog 9And of course, in no time I was on an equally calm return flight to Yangon and breathing in the sea air and holding on to the peacefulness of the previous days as I prepared for the week ahead.

Ngapali sunset

Serenity and tranquility

After five years…… time stands still

There’s nothing quite like a fresh, new sunrise the morning after a day of intensity, exhaustion and a peak of fear. And there’s nothing quite like being able to watch the colours change, and the shadows morph knowing that the previous days has not brought to bear the fears which you have been harbouring.  Good morning, Bangkok.

bangkok sunrise

The sun was shining when I left Yangon on Wednesday morning. Rainy season is weakening day by day, and the skies are blue although the air is still thick and oppressive.  The flight to Bangkok takes only an hour but on the approach, we had to fly through thick, angry clouds before touching down in a rainstorm.  How can the seasons be so different, when the distance is not so great?

If the clouds were gloomy, my mood was even more so.  The passage of time, even five whole years and seven days, just does not make it any easier. The Big Checks have been looming large and approaching all too quickly. In the days running up to the checks, I discovered a worrying connection between a strange twinge I have been having and cancer progression.  I the  departure lounge of Yangon Airport, I purged a mass of thoughts, spilling them into this outpouring. Writing continues to be my Xanax, until it gets too scary.

Thursday arrived all too soon.  I slept very badly, as to be expected, and felt rough and nauseous.  In my mind this was another suspicious sign. I showered, and slipped out of the hotel before breakfast, having fasted since the evening before. A bright pink taxi was to be my transportation to the hospital, despite trying to flag down a green and yellow one!  The driver was in his own world, singing his heart out along to the music on the radio, word perfect, but tone far less perfect.

Too soon I was closing the taxi door and walking through the glass doors, towards Counter No 2, a tight smile, stomach growling nervously as the team welcomed me like a long lost friend.  Bloods first.  I cannot get used to needles, but the phlebotomists are wonderful and soon filled three vials of blood.  Next I was packed off for X-ray, then mammo and then ultrasound.  Ultrasound is the ones which unnerves me most. I hate seeing the shapes on the screen, I dread the “click, click. click. click,,,prrrring” as the Ultrasound Doctor pegs the dimensions of the shapes she finds interesting, chatting to the nurse and slathering on more cold gel.  “Breathe in.  Hold. Breathe out now.  Again.  Again.  Again…..” My upper abdomen, the scar area, sides are all thoroughly scanned, and i catch sight of some shadowy, sinister figures, losing count of the “click, click, cick, click…. prrrring”, over and over again.  It must be trouble.  So many shapes to peg, so much going on.  There must be cancer everywhere.  I can’t bear to think about it, but if I don’t then I won’t be steeled to hear the review from the oncologist later.  I can’t be niaive like I was the first time, missing all of those clues. Since then I pick up clues from every whisper, every comment and every averted eye. “Are you seeing Dr W today?”, the Ultrasound Doctor asks? I swallow before replying that, yes I am.  I interpret that as another silent clue that all is not well.

It seems very sudden when she stands up, tells me that she has finished and I attempt to wipe all of that cold stick gel off and head to put my clothes back on.

Next are the vitals, weight, temperature, oxygen whatsits and Blood Pressure.  I know my BP is high.  I am terrified.  I have hours and hours before i know what the scans are saying. The nurse checks the monitor, alarming me with her “Huh?” when she sees three red questions marks where the BP reading should be. She looks at me in puzzlement, not quite sure why the machine has decided to express an opinion!  She tries again.  At least there is a reading this time, but yes, it is high.

The morning is half way through, and next is Dr A, my endocrinologist.  I really must look that up one day.  Endocrines.  They must be important.  I wish I knew what they were. No need to see the nutritionist this time, she signed me off with my false 5 kilo weight loss!  Ironically, I have lost another two kilos, but from the correct weight of last time, not the wrongly recorded weight which caused her excitement!  I am not complaining! I am now 4.5 kilos down over 6 months.  Not a great deal in the big scheme of things, but it is a buck of the trend, and that is actually a really big deal for me as I battle the side effects of the smorgasbord of medications.  He notes that my bloods are mostly ok.  Kidney and liver function good, (really?  liver function is ok?  that must be a good sign???_ Haemoglobin slightly up.  But so is the sugar, just a smidgin but edging ever closer to that diabetic range.  However I realise that despite the direction towards diabetes, I seem to be at least slowing that.  Eating habits and exercise must be helping.  But then he highights the cholesterol.  That is again slightly higher than before, the trend again consistent increase.  So ironic, that since switching to femara cholesterol has become a problem.  No longer do I have “healthier levels than Dr A” as he used to tell me.  No, he tells me that it is time for me to start medication to address this as it is not responding the eating plan.  Sigh.  Yet another med.  At another time of day. He also notes that one of the tumour markers has gone up.  It has been hovering about 9 points above the reference range, again since the switch to femara.  It has now gone up another 6 – 7 points.  A bit of a jump.  This is not something he takes care of, he will leave that to Dr W. The last time Dr W saw a rise in that marker he sent me off for CT scans (HATE them) and a bone scan. He waves me off and asks me to come back in 3 months to check on the bloodwork.

We are approaching lunchtime, and I have a long wait until the review appointments with Drs W and W2 to review the results and find out what is going on.  It is far too long to sit waiting, with a mind which is flitting along a spectrum from “it is going to be all right, I always find this wait awful and then I learn that the worries have been unfounded right through to – those shadowy shapes are bad news, the tumour marker is an indication, the other signs suggest that there is really something to worry about. It veers far more towards the frightening scenario than the reassurance.  I really fear that these are my last hours before I hear more life-changing words, before my universe pauses and shifts out of alignment and into a parallel universer in the way that it shifted 5 years ago.  I have to leave the hospital and distract my mind.

The ideal task is to try and find the next Book Club selections and I head towards the Siam Paragon  Mall.  Paranoid, that’s the Mall I am visiting. I head on the sky train, but the time is passing so so slowly.  I try to browse in the bookshop but it is impossible.  Eventually I track down one of the books, but my mind is unable to focus on anything and I know I am likely to lose my bank cards, walk out of a shop without my belongs, or worse, without paying, I am so distracted.  I try settling down with a cup of tea, pouring cup after cup with refilled hot water, and jotting down notes.  I form a fragmented setof notes which I believe will make a poem.  The waiter is called October.  There is a piano which has no pianist and is playing old Gilbert O’Sullivan numbers.  I know the lyrics.  I hope I am not singing them out loud. Friends send messages of support and the tears which are too near the surface have to be physically restrained.  I see to be there for hours, but the time just will not move.  Eventually I pay my bill and leave.  I am wandering past shops with no idea what they sell, when I realise that one of the waitresses has run after me, calling to me.  What have I done?  Did I leave my belongings behind?  She waves my favourite pen – I have left it on the table.  It must be time to head back to the hospital before my distraction causes something more serious.

Back in the waiting area, I try to read but there is no point in turning the pages, I can’t comprehend the words of even this light novel. Every time someone walks past my head involuntarily inclines as I see if it is Dr W2, my oncologist.  Eventually I hear a voice behind me, saying my name.  He has arrived, through another entrance and has spotted me sitting waiting. Within moments he calls me into his consulting room.  My stomach twists, and I struggle to control my features.  I walk into the room.  The wait has been so long but I just don’t know if I am ready to hear what he has to say.

Physical exam first and he is concerned by bruising.  The warfarin dosage is a little high, it seems. He doesn’t notice my flamboyant toenail art. It is always a good sign when he comments on my unorthodox nails, it means he is not worried about the results.  I will him to notice the colours.  I sit down, and wait to hear what he will say. In my mind, I wonder how he will tell me bad news.  Dr W was the one who told me of my original diagnosis, and Dr W2’s style is very different. He is reading the reports, I can’t bear this.  Eventually, he tells me that the scans are mostly fine.  The mammo is BIRADs 2 which is as good as it gets for me. He is looking at something in the X-Ray but eventually says he thinks it is ok.  The ultrasound shows some cycts on my liver, but not worrisome.  He looks to the tumour marker.  It has been raised since the switch to Femara but this is a bit of a jump.  He says it is not immediately alarming, especially with the other scan and blood results, but he feels that 6 months is too long to go without reviewing.  He wants me to come back in 3 months.  I knew in my head that even if the checks were all clear then it would be unlikely that I would be sent off for a full year, as happens at the five year point, but 3 months represents something between “NED and no reason to worry” and “houston we have a problem and I am sending you for SC/bone scan/biopsy or some other procedure”.  It is a kind of halfway house.  Dr W later reviewed me from his surgeon perspective and was less worried than Dr W2 by the tumour marker. His first question is always “how long is it now?” and it was comforting to reply “five years”.  Five whole years and seven days since I had sat in his consulting room and he had told me “this is highly suspicious of cancer”.  And this seemed like the right time to give the gift I had brought for him, Dr W2 and S (the liaison manager) – all of whom have played such a role in this cancer experience.  It was particularly meaningful for me to give Dr W a copy of Dragonfruit, and showed him the words he had spoken.

It was nearly 8 pm when I finally left the hospital, tears still so close to the surface, a combination of exhaustion, emotional depletion but not tears of distress from hearing unwelcome words of worrying results.

I have said many times, that the mood when I leave the hospital after these checks is not one of elation but one of utter exhaustion.  I feel numbness and struggle not to weep.  I am not complaining, just telling it how it is, or how it is for me.  This is about as good as it can get.  If you asked me what would I really want from the checks it would be easy to answer. In an ideal, unreal world I would want to hear that there were no funny marks, cysts or wibbles for the scans to pick up.  Low tumour markers.  Healthy bloodwork which means I could come off some of these heavy medications.  And if we are being imaginative, some magical reversal of the gradual progression towards diabetes and raising cholesterol and disappearance of all of the side effects which make me awkward and lumbering.

But for now, being released back into the world for the next three months, being able to plan for the weeks ahead, and watching the Bangkok sunrise are more than enough.

It’s all in your mind

Written on Wednesday 8 October, Airport Departure Lounge, Minglardon International Airport, Yangon.  Travelling to Suvarnibhumi Airport, Bangkok.  Silently willing the upcoming monitoring oncology tests to be reassuring.

“It’ll be fine. Trust me. I know.”

Words of intended reassurance, which make me crumple. I’m sorry but actually you don’t know. I don’t know either. Yes, I know that seems odd, how can I not know what is going on inside my own body. Yet the truth is, I don’t know. Nor do the doctors until they carry out their routine, or not routine, tests. Only then will we know if it is fine or not.

The reality is that not only do we not know if it is “fine” or not (do I get a prize for the highest number of negatives in a sentence?), but we do not have control over whether it is fine or not by our attitude. I can neither keep cancer at bay by a jolly positive attitude, nor entice it by fear and anxiety. My attitude plays a part in how I live through cancer, not how the experience will play out.

The other reality is that no matter how we try to keep our conscious thoughts in rein, the subconscious can play very clever games.

This morning, I was sitting on my travel bag, trying to persuade the edges of the zip to meet before snapping the padlock shut, picking up my passport and ticket, and checking that I have my bank cards for the umpteenth time since breakfast. I had a last quick peek at the world before I disappeared offline for a few hours and was stopped in my tracks by a Facebook status update from Liz of Paw Paw Salad, one of my online BC blogging friends. She is also facing her checks (next week) and has been making Very Deliberate Efforts to Not Think About Checks. However, her subconscious had kicked in and she described a dream which could have been one of my own. She had been at the hospital in her dream ………..

The next review by my breast cancer team is coming up very soon, and I am determinedly Not Thinking About It – but my subconscious hasn’t got the memo. Had a dream last night where I was at a huge, mysterious hospital at which my (lovely, distinguished) oncologist was only going to be available to see patients for one day. I knew he was worried about me – I just didn’t know why. I then proceeded to: (a) meet with friends off the premises while waiting for my appointment, letting time stretch on until I realised it was getting dark and I was hopelessly late; (b) have a gazillion action movie adventures trying to run back to the hospital with various walls, ladders, and other impediments in my path; (c) bump into said oncologist in the corridor where he was speaking with some eminent colleagues and make a Wiggle joke about the skivvie he was wearing, thus imperilling his willingness to speak with me (!!!), and (d) realise I’d left my handbag and sandals (!) in a distant ward of the labyrinthine hospital and that I simply had to find them before my appointment. I woke without ever seeing the Prof, and feeling more wrung out than when I went to bed. Good grief.

I know these anxiety dreams so well. There is a pattern to mine and they are particularly creative around the time of upcoming checks and also before (particularly long haul) flights. Travelling to Bangkok for checks combines two anxieties for exponential bonus effect. Not difficult to interpret! Mine are not set so often in hospitals, but in airports, and also in places where I am trying to pack and depart for the airport. But all of them are labyrinthine! My checks always begin with a flight. I am writing this in the departure lounge right now. Attempting to take control, and manage those thoughts. A vain hope, but worth an attempt.

In another situation or context these dreams would be amusing and they are most definitely creative. I dream that I am packing but the case is filled with all of the wrong things – other peoples’ clothes, papers, even food shopping from the supermarket! And I am unable to find my own belongings. Or passport. Or I don’t know the time of the flight and I can’t find my ticket to check, so I do not know what time to leave for the airport. Or I just can’t quite work it out. I start from the time of the flight and subtract the necessary time to check in in advance, then take away the travel time plus a margin for traffic and delays.  And I have forgotten what time the flight was and have to start over.  And over. And over….  Once I even dreamed that I had to accompany a close friend to the dentist on the way to the airport. I became extremely agitated while she was having treatment because I should have checked in ages before and the departure time was approaching! Oh and then the airport. So many corridors, stairways and procedures to get through before check-in. I have had to climb escalators which had no solid ground at the top. I have had to sit at a coffee bar drinking coffee I don’t like, sipping slowly as it is far too hot, while the check in desk is closing within my sight. In that dream, I was not allowed to proceed to check in until my coffee had been consumed and paid for. I have had to walk miles along carpeted corridors to get to another terminal building which is not signposted and impossible to find. And the other night I dreamed I was on a Qatar Airways flight (how specific is that?) and takeoff was aborted. For some reason, I had to get out of the plane on the runway and walk back to the departure lounge. No one else did, just me. Have you ever realised how long a runway is? This one was like a dual carriage way and miles away from the airport building. Each time I wake up exhausted, stressed-yet-relieved and there is a tiny part of me which is quite impressed at the nonsense I can manufacture!

I have eventually realised that in fact, the airport in my dreams is exactly that – one entirely of my own fabrication, yet intriguingly it is familiar and consistent from dream to dream. I originally believed it was Heathrow or Bangkok but it bears no relation to the reality. It is purely my own creation. My very own virtual airport. And if I never visit it again, I will be extremely happy!

So no matter how much I try and restrain my fears and anxiety in the light of day, the brain keeps on processing and whirring and spits out the most incredibly detailed interpretations of these fears when the darkness falls.

My fears have been cranked up an unkind and steep notch in the past few days. Capt Paranoia, or cancer, has played a particularly nasty trick. On Sunday morning, I attended a very interesting session in Yangon for General Practitioners to enhance their awareness and understanding of cancers. There were a number of presentations highlighting the most common cancers and their key signs and symptoms. Breast cancer came first (this is how I have connected with the Foundation which is working in this area – more about them in another post), followed by ovarian, colorectal, lung, oral….. As a lay person, there is always the twinge of worry when you see lists of symptoms but I was shocked into a cold sweat when I saw the list of symptoms for cancer in the liver. I mentally ticked off symptoms I had not realised were connected to the liver. Last week, feeling uncomfortably full after a meal. That funny little twinge I had been feeling off and on under my right shoulder blade. Symptoms which are incredibly specific. My mind did its own “sift and search” function and spat out the suddenly remembered detail that I have nodes on my liver, noted during previous CT scans which have remained unchanged but monitored. Have these nodes developed sinister cells? Cancer in the liver. That is a whole new ball game. One I don’t want to play. I am in that limbo space now waiting for the checks. Can these symptoms be caused by other things? Or am I entering a very new and feared territory? One thing which I am thankful for, is that I already have these checks booked. There is already an upper body ultrasound booked as well as other checks. I am prepared for CT and bone scans as it has been two years since the last ones. Oh how I hate CT scans, but they do tell a full story. I don’t have a horrendous wait, not do I have to think through a “do-I-go-or-do-I-wait-and-see” decision. Wait and worry while this could be nasty. Or speak with my GP and find I am overreacting. (not that my wonderful doctor ever tells me that – he either quietly reassures me, or asks me if I have my passport in my pocket!) This could not have been timed better in fact. Routine checks that will reveal whether this is cancer reappearing or whether it is all in my mind.

When I arrived at the airport this morning, I pushed my travel bag, laptop back and handbag onto the security screening machine, and walked through the twinkling, screening frame towards the frisking security station. As I went to step onto the raised block I slipped. I didn’t go down, but just slithered momentarily. Glancing down, I realised that I have been so preoccupied that I left home in my indoor shoes, affectionately nicknamed my tsunami sandals (another long story, but I associate them with protection). Those sandals never leave home now, they are too precious and besides they are hardly appropriate formal footwear. Happily they are not quite “slippers” but still I delved into my bag and pulled out another pair for the flight. But my mind has already made its own interpretation. My slippers have come with me to look after me and remind me of other dangerous situations I have been in.

The thing about cancer is that while it is very much a physical disease, it pervades the mind in the most sinister of manners. It causes such torment and torture and brings those expressive dreams.

Only time will tell how much of this is in my mind. But all of it is ON my mind, and that is that nature of a cancer diagnosis. shadowselfie on mind

So please, don’t tell me it will be fine. Only the tests and the Doctors can do that.

The winds of change

September is a mixed month usually in Myanmar.  The rainy season starts to ease.  I returned to a couple of days where the sky was blue, the daytime temperatures soaring and Facebook statuses celebration a break in the clouds.  Quite literally. The months of June, July and August see thick cloud, heavy rains and only a very rare glimpse of the sun.  It is sticky and uncomfortable, yet it is refreshing and life-giving.

This afternoon, I sit in one of my favourite spots, a balcony on a Yangon Tea Salon, bounded with orchids, a peaceful and creative space, attempting to catch up on bloggery and life. The earlier, hot sun has been chased away by gathering back clouds and in moments my peaceful space is turned into a rainforest.

last rainsI love the rains, though I do find the constant greyness depressing and the humidity exhausting.  The rains are warm, unlike our Scottish rain and they bring a wealth of sounds, plant life and noisy animal and reptile life into the everyday.  They disrupt.  Sudden floods and violent downpours bring life briefly to a standstill. But they bring an indescribable childish zest.  I never tire of listening to the thundering downpours.

But now, inevitably we are moving into new times.  The rains will subside, wider swatches of blue sky will appear and by late October/November the rains will be but a memory.

The Yangon sky as the seasons change

The Yangon sky as the seasons change

This season represents a different kind of change for me.  We move through September, and my stomach tenses, my breath shortens and my mind becomes increasingly distracted. I discovered the lump which was to be a door into a new and strange world, the breast cancer world in September 2009 and I face a number of significant anniversary and landmark days.  To reinforce this, the global Breast Cancer Awareness month shakes up a multitude of reminders and debates. And just to add to the intensity, the Great Annual Checks and Scans loom.  As the rains disappear and clouds move into the distance, All Things Cancer sweep forcefully into my line of vision from all directions.

More than ever, I will strive to keep some balance as I navigate the coming weeks.  And I am sure I can be forgiven for wishing to close my eyes and find myself in November, checks behind me and some reassurance to take forward and clear blue skies for some months ahead.

Chocolate frogs and teddy bear elastoplast

So the lurgey saga continues………..

I returned home late on Tuesday evening, after two short return flights and time for a glorious foot massage in transit in Bangkok Airport. My baggage was heavy: one full bag of eleven days worth of dirty laundry; extra papers, booklets and resources from the packed days of work; bulky folded flip charts with gold dust in the form of ideas and plans for our work across the region; and crammed in the final little corners of the travel bags – pills and potions to help to banish the nasty bronchial illness which was continuing to drag me down.

I knew I just had to get through two more intense days, then I could take a day’s rest before the weekend. However, despite the meds which had been prescribed in Vientiane, and because of the self-same meds which can reduce the effectiveness of my blood thinning meds, I made an appointment to see my Doctor here in Yangon. Mainly for a blood check, as curdled blood would not be fun, but also for reassurance and any refinement of treatment because of the continuing cough and depth of exhaustion.  Captain Paranoia was clearly in the shadows, just at the edge of my line of vision but very much in my mind as he slithered around.

I had little need to explain myself when I saw Dr Y2.  He had heard my cough from the waiting room, seen my drawn and tired face (his words, not mine) and we went through details of the span of this particular bout.  I had been on antibiotics only a couple of weeks previously, so it concerned him that I was so soon felled by another bout.  Almost immediately, he announced that he would run a chest x-ray. And that was the cue for Captain Paranoia to leap into view, sticking his ugly face into mine and sneering “I told you so!”

I was escorted down to the x-ray department, trying to calm my mind with not an ounce of success. All I could think of was imminent bad news, changing plans and life taking that turn again. I held tightly onto my thoughts, trying to keep them in the present as they tried to move into scenarios where the x-ray highlighted something much more sinister than bronchitis.

Things happen quickly here, fortunately, and there is little time to descend too far or for Captain P to get the firm grip he is seeking.  I was ushered into the x-ray suite, the film in an envelope and back in the surgery in no time with Dr Y2 poring over the film. He had even made me a cup of tea, which I was sipping as my blood draw was taken. He was pointing out an area which showed clear bronchitis.  There was no mention of any nasty surprises.  Only the lurgey.  Captain Paranoia was slipping out of the clinic, into the waiting lift and out of sight for the time being.

I was soon back in the consulting room, and Dr Y2 writing out a new prescription to banish this stubborn bronchitis.  Along with a sick leave certificate, which I tried to resist initially.  He was concerned over my level of exhaustion and insisted that I take a few days of real lying-in-bed-and-not-even-getting-dressed rest.  I cancelled the commitments I had and headed home.

And it was when I was at home, I noticed that the sticking plaster over my blood draw was covered in teddy bears!

Teddy bear elastoplast

Teddy bear Elastoplast

And that says it all really.  It tells me that I am looked after with the utmost clinical and medical professionalism, and wrapped in care and respect.  The staff know how I hate the blood draws, and Dr Y2 knows how my mind veers off into scary places – so I get a cup of tea and teddy bear Elastoplast.  And this is not new.  Dr Y1 used to dispense a chocolate frog every time she saw me.  I know those are reserved for children and especially children who are have painful or uncomfortable procedures.  But she used to tell me with a conspiratorial whisper that oncology patients also have rights to chocolate frogs!

Chocolate frogs!

Chocolate frogs!

I know that I have had and still have difficult challenges to contend with, but I also know that I am extremely well cared for in every sense. 

And I have the teddy bear Elastoplast to prove it!

Costly and subdued.

The promised update.

The latest round of checks is behind me and I am breathing out.  That means one thing – that the important tests were mostly fine, and that I can breathe out slowly again.

I have been surrounded by support and care, and cannot express how much I value that.  There is never a time with these checks that you can truly put it all behind you and consider it “done”.  But it is good for now and I am just that little bit closer to NED (the precious No Evidence of Disease) than I felt last time.

My two cancer Docs, Dr W and Dr W2 were both happy and thorough.  My tumour markers remain elevated but stable.  As in almost exactly the same now over the past 18 months, and in fact since the rise which prompted the scary scans in October 2012. So this meant no bone scan this time.  Which was very welcome news! It does mean that there will be a number of scans and extras in the upcoming Annual Big Checks in October. But that is ok, because for now I can breathe out.

My aspiration is for Dr W2 to call me “boring” and I have still to attain those dizzy heights.  Last time he saw me I was “complicated” which is much better than “interesting” but still not boring.  This time I am in a better place in the scale – “expensive”! He asked me if I need more meds, and I said that I did.  I said that I could get some myself, but he expressed concern that they might not be good quality or genuine and I agree that it is better that he prescribes these.  However, that comes at a cost! Confidence that the meds are genuine means that they are also expensive.  And as time wears on, I gather more meds instead of shedding any.  Added to that, I am fighting off a couple of infections at the moment and needed to add an antibiotic to the mix.

medsDr W2 also said that I seemed to be one of a small number of long-standing patients.  I was surprised and he told me that many stop consulting him after their acute treatment, and many return back to their original countries.  So I have some kind of loyalty pass which is rather comforting.  Dr W similarly spoke very warmly with me, offered support to the Yangon Breast Cancer Friendship Group which we are establishing and was generally very encouraging.

It was not all so warm and cosy though.  My endocrinologist was less happy with my bloodwork.  My previously wondrous cholestrol levels have been steadily rising as are my sugar levels.  I am working hard to keep diabetes (which has been in my mother’s side of the family for generations) at bay and it seems that this is not going to last much longer if the trends continue.  I find this so frustrating when I exercise so consistently and eat very carefully.  I showed him my exercise log (ok, it’s a rather obsessive log of how far I swim daily, how far I cycle and how long I exercise for – I find it really motivating).  I find that I exercise between 180 and 250 minutes a week on average. He told me not to blame myself as if there is a strong genetic predisposition then I cannot halt that.  However, I also consulted with a nutritionist to see if there is something I am missing or not doing properly.  With her, I worked through a typical day and exactly what I eat.  She looked up at me and noted that my diet is more healthy than hers!  She suggested a few adjustments – such as reducing my fruit intake and adding some protein to my evening meal.  So I will give that a try.  She also noted that the lack of thyroid function is significant in metabolism and weight issues, even taking the synthetic thyroid which also made me feel better.  But then she suggested I am for a 3 kg loss for my next appointment.  Which totally deflated me.  I feel that aiming for a specific weight goal just does not work.  I struggle and work so hard not to gain, I feel an automatic failure if I cannot lose kilos.  I prefer to ensure that what I do is right and if that leads to weight loss then that is great, but what matters is to eat carefully and exercise.

Ironically, Drs W and W2 (my oncologist and surgeon) were happy to recall me in my usual six months, but the endocrinologist wants to see me again in three months.  Sigh.  A step backwards, it feels.

The ray of sunshine in this though, came from Dr W.  He knows me well and asked me if I still swim and cycle and I confirmed that I do and that this season is perfect for the morning routine.  I told him that there were concerns about my cholestrol and weight and he instantly said that this is well known of Femara.  Which was enormously reassuring and validating, and is very much what I suspected as these issues emerged from the very first checks following the switch from Tamoxifen. And as another friend said “cholestrol is better than cancer” and for sure, it is!  It is not great but the Femara is there to keep the bigger demon at bay.

As I move forward then, I juggle the bonus combo of a genetic propensity to diabetes and high cholesterol, lack of thyroid function and the side effect tactics of Femara. None of which I can do anything about, except continue as I am.

Water music

So here I am, again on the other side of a round of checks.  Again slowly breathing out.  And again subdued. I might not be “boring” but I am expensive so that must make me rather classy – right?

And whatever else I am, I am beyond thankful.

 

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!

DSC_0073

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. 🙂

In a scary space – the details of the past days

Pre-script/spoiler alert

As promised, here is the detail of this latest twist in the tale.  I particularly wanted to provide the previous short post, to share the news promptly that the investigative tests had been clear.  This is absolutely not intended to bring concern or suspense, but rather to document and probably moreover, process and offload, download and upload the events of this week.  Hence the “spoiler alert”.  There is no bad news in this post.

While I was waiting for the bone scan, I had two hours to wait after the radioactive dye was injected.  I sat down with my laptop and hammered away at the keys, just banging down what was going on in my head.  Looking back, it was just like being in an exam, that sense of purpose and pressure as the words flowed.  The following is what I wrote during that time.  I have tidied rather than edited, so it does come across as rather messy and lurches from big serious thoughts to the utterly trivial.  I did not want to re-work this apart from correcting errors and clarifying aspects which in hindsight might be inaccurate or unclear, because it is a snapshot of where my mind was right at that time, when I did not know.  I have added this pre-script and a post script to situate what I wrote while in that scared space.

I am sitting writing this while the radioactive dye does its preparatory work.  Ironic as I am “dying” to know what the bone scan is going to reveal.  Dying to know that I am not stage 4 and not in a inevitable process which will ultimately lead to my body dying.  And my mind, although not for as long as I can keep my hands on it.

When I am worried, I tend to retreat into myself.  Contradictorily I crave support and reassurance, but something inside me retreats and works through whatever needs to be worked through until there is at best reassurance and relief and at worst clarity on where I’m heading and what options there are.

And that is the space where I find myself right now.  Usually I don’t write about this, either on the blog to the wide (wide blogging anyway) world, but also not really to family, friends or colleagues either.  Since my original diagnosis in 2009 when I told hardly a soul, I have developed a slightly more “let’s not tempt fate” approach to follow up tests and usually share a concern or worry if I have one.

I approached the tests this time with a slight sense of complacency.  And that was thanks to the CT scan I had had in July at the time of the Pulmonary Embolism.  Dr W2 had reviewed that CT scan not just from the perspective of the clot, but also (and particularly I suspect) through his oncologist glasses.  He told me that the CT scan gave no indication that cancer was a factor in the pulmonary embolism and lung/ chest trouble.  What a huge relief that was.

And so this has been not so much in the back, but very much in the forefront of my mind.  If there was no sign of anything worrisome back in July, then surely things have a better chance of being ok through these results.  Surely.

Having the Big Annual Checks so soon after the PE episode added to this complacency for sure, although I would not be me if I was not anxious and worried about the checks.  That is the way I rock and roll.  I am the Worry Queen after all.

The checks had to span two days as the number of specialists (aka superheroes) I see increases with each extra bonus “thanks to freaking cancer” condition I collect as time wears on. So on Monday 8 October I presented myself at my second home, Counter No 2 so that the process could begin.  I had to ensure that the staff knew to take all the blood they needed for all the docs – I have a range of checks including the usual full blood counts, thyroid monitoring, glucose, kidney function, liver function, INR and clottery levels, hormone levels and of course the scary old tumour markers.  To name but a few.  A few phone calls confirmed the final count and several vials (felt like litres) of blood were syphoned off.  (And they seem to be surprised that I am mildly anaemic when I am constantly being bled?)

I then had a couple of hours before seeing Dr M, the latest addition to my A team – my cardiologist, who was enlisted at PE time.  That permitted time to run out and undertake a rapid procurement of a couple of new swimsuits.  All this daily swimming is resulting in perishing swimsuits so replacement was getting urgent.  Before very long I was back at the hospital and waiting for Dr M.

He was happy with my results, and paid particular attention to the  INR result (my blood needs to be in a specific range, knows as the therapeutic range) while I am on warfarin for PE.  The result sat comfortably in the range and he was happy with that and the reasonable stability of results since returning to Yangon.  He was very happy with liver, kidney, thyroid and the other results that he was interested.  He will review how long I will be on warfarin, but we are still talking at least 6 months.

As he turned the page for the final results (which he was also happy with), my seasoned eye sought out the tumour marker results, as I know where they are on the page, and I know the reference ranges by heart. (no pun intended, siting in a cardiologist’s office!)

The CEA was comfortably in range at 3.62, but my eye was caught by the CA marker which has a reference range from 0 – 22.  This one tends to vary a bit, although it did reach 26 once which totally freaked me out, but it tends to be late teens early twenties.  Yesterday the figure of 30.2 screamed out at me. Now of course I am no expert, and much as Captain Paranoia is instantly leaping around me, jabbing his finger at the number and generally “high-fiving” around the room, I knew that his mischief was premature.  I asked Dr M and he said that this was not his area of specialism and that Dr W2 and I should talk about this.

So that was the start of the worry kernel planted in my head.  Dr Google’s advertising campaign sprang into action and for once I ignored it. I don’t want to hear his unreliable scaremongering.  No point in adding to my sleepless night with more scary thoughts.  I know his tricks.  Unfortunately this is one of his super-busy bonus seasons with all the “awareness campaigns” so the fact that has given up on me for the time being is more likely to be an indication of how busy he is rather than a shift in my own mind!

Of course, the tumour marker nagged away at my mind all night and I did not have a good night’s sleep.  I also had my range of tests due in the morning, so was generally cranky and nervous.  I was scheduled for mammo, ultrasound of breast and upper abdomen as well as X-ray.  No CT scan thankfully, as I hate them, really hate them.  Unfortunately the instruction to fast for the ultrasound had not reached me, and I had provided my bloods the day before after fasting so was surprised to learn that I should not have had breakfast.  This prolonged the scanning timetable as I had to return later for the abdominal ultrasound.

Finally, the scans were all done, I was well and truly squished and scanned and waiting nervously outside Dr W2’s room.

Dr W2 is a hero. He was happy with the mammo, X-ray and ultrasound results and said I was looking good.  We talked about the warfarin briefly, and then I asked about the elevated tumour marker.  His words of response were:

“That is a concern I have”.

GULP!

Those are NOT the words I wanted to hear.  I wanted to hear his usual “pah”, with his reassurance that there was nothing to worry about. That is the deal – I worry, and he reassures.

Next was the physical.  This was a bit different.  More checks, different prods, including the lymph node areas.  And different questions.  Have I noticed any unusual pain?  When was I planning to return to Yangon?

I really didn’t like this change to the routine.  Alarm bells were clanging loud and clear.

After the physical I sat back down and he started to go through a plan.  He talked about the Femara switch and if that was working out ok. Then he said he wanted to re-run a CT scan.  Mainly for follow up of the embolism.  Oh the dreaded CT scans, how I hate them.  I had thought with all the scanning and monitoring of the morning that those bits were done. 

Then he hit me with “and I will send you for a bone scan”. 

A bone scan??  What The What is that about? 

I should know better, that if you ask a direct question, especially to Dr W2, you need to be able to handle the direct answer.  I don’t think I was.

Is that to do with the Femara?”  I asked, knowing that Femara is more aggressive in depleting calcium in the bones.

“No” he said.

“No, we need to see if there is any cancer in the bones.  With your type of cancer, metastasis to the bones is more common than in other cancers”.

GULP!

“ Once you have had the scans, then come right back and see me.”

I was utterly stunned.

Appointments were rapidly scheduled, and the CT planned and carried out a couple of hours later.

The bone scan cannot be done in my hospital so I have returned to Wattanoosooth Cancer Centre of Bangkok Hospital where they have the radiology facilities for the city. 

And that is where I am siting right now, after turning up this morning and being seen almost immediately.  The radioactive dye was injected gently into the back of my hand and I have been asked to return in 2 hours for the scan.  This is a living nightmare.

I knew I would need a bit of help with this.  I joke that blogging is my Xanax, but when push comes to shove and I am at my wit’s end with worry and fear, then Xanax is the only thing I can think of that will do the trick.  I had already left the consulting room yesterday, but knew I needed something to lean on so asked Dr W2’s lovely assistant if I could ask Dr W2 for some Xanax.  A strange interaction ensued as she popped her head into his room.  Yes he would give me one Xanax for the scans.  ONE XANAX???????  I need a wheelbarrow full to get me through the next few days I screamed silently.  I’ll give you a strip of ten, he said, seeing my face.  Success.  Plenty to tide me over.

But blogging or writing is still my Xanax and that is why I am sitting here right now, battering away at the keys while the radioactive dye does its work and I wait for the two hours before the scan itself starts.  I think the Xanax is probably doing its work too as I think it has taken the edge of the extreme nervousness about the procedure itself.  It hasn’t taken away the fear, though nor has it prevented my mind rattling all over the place and heading in so many directions.  I know that this scan is specifically to investigate whether or not there is any sign of bone mets.  My mind leaps from the optimism that this will be fine, that there is only one raised marker, no other signs or symptoms.  To the scenario that the cancer has metastised to my bones.  And onwards to the bonus scenario that whether or not I have bone mets, that might perhaps mean that other organs could be affected, which is even more frightening.  Perhaps there is an entirely innocent explanation to the marker.  But deep down, or not so deep down I know that markers are less reliable when report low levels rather than high levels.  A raised marker is less likely to have a benign cause than the reverse.

This takes me right back to the space I was in just over three years ago.  After Dr H had told me that I should have the “asymmetry” investigated in Bangkok.  I remember veering from “I’ll be fine, there’s no history of cancer in our family and it just can’t be” to “if this is cancer, I will not let it take me, I will fight it and win” (oh the naivety) to “this is cancer, there are too many “let’s get worried” boxes that are ticked by my presenting symptoms.  I am afraid, how long do I have?  I could be gone by Christmas”.  Oh this is all so startlingly familiar.

My head is in such a similar space just now.  Part of me is optimistic based purely n the fact that the “only” alert has come in the form of the raised tumour marker.  And hey, it is not THAT raised.  30 is not so high, it is not in the hundreds.  And it has been 26 before and gone back down.  And that was also in October.  Must be something to be with stupid Awarenss Month my friend and I “rationalised”.  Based on no rationale whatsoever.  A bigger part of me is facing the fact that there cannot be many benign reasons for the marker to be raised.  And that is where my mind keeps returning.

The thing that terrifies me, apart from facing acute treatment again, management rather than cure, no end of the treatment this time, is about my future.  I cannot see it being possible to continue working with stage 4 cancer, overseas and in humanitarian and development work.  So what on earth do I do?  We would, in all likelihood have to relocate to the UK, and after 12 years in Asia that would be a massive change, even without the prospect of investigating how to get treatment and care in place.  I would have to set up home again in the UK, and what about all the paperwork and documentation to ensure hubby J could also relocate.

It is all utterly overwhelming. What the on earth are my options, what am I going to do in every sense.

As my mind continues to hurtle in all directions, I try to stay in charge of it.  Undoubtedly this will continue, and intensify until I see Dr W2 again.  At that point I know there are likely to be a few possible scenarios

  • Bone scan is clear.  High fives. Tears.
  • Bone scan shows clear metastasis and we will be looking at diagnostic investigations to identify treatment plan. Get hubby here pronto and speak with family.
  • Bone scan clear but signs of other worrying stuff going on elsewhere in my body.  Needs more investigation.  Biopsy etc. Tensed jaw, questions, trying to remember the answers to the questions which I must not forget to ask.  Get hubby here pronto and speak with family.

How can I tell my family?  What words will I use?  How much should I forewarn them that this bombshell could be coming?  What do I do about the visitors we expect in 3 weeks time? What about all the Big Stuff going on at work, the major project just approved after two years work?  All the changes going on around us?  How can this be happening now? What about my new bike?  Can I ship it to the UK if needed?  How long will I still be able to ride the darn thing? What about my hair?  No point in booking the cut and colour I had planned.  And the birthday thing?  My mother died on her 65th birthday, and my step mother on her 75th.  Am I going to die on my 55th birthday?  How do I tell everyone if the scan results are bad?  When should I start to make a list of those to phone, those to email and start on that dreaded “bad news” blog post…….

If it is in my bones, then I am stage 4, pure and simple.  If I am stage 4 then we are talking treatment and management rather than cure.  Not beatable, but treatable.  And that is the thing.  Treatment of Stage 4 (from the little I know) is about management, finding the option which best delays or slows progression of the disease.  And that treatment just keeps on going as long as it works.  8 cycles of chemo felt like a lifetime back at diagnosis time.  But there would be no more being able to count down towards the end of chemo, this is quite literally chemo or other treatment for life.

Writing this, has helped somewhat to control my mind and organise my thoughts.  I am still overwhelmed and terrified but the two hours has almost passed as I have battered out my thoughts.  Writing and Xanax, working in harmony.

Time’s up. Now it is time, time to enter the scanning bunker and do the tests which will determine my immediate future.

Post script

I found the scan was much easier than a CT.  Perhaps that is in part thanks to the Xanax?  For half an hour I lay, swaddled in a blanket and my arms held in place by my side while the scanner moved around silently and unobtrusively around me.  I probably drifted off.  My mind was nowhere in particular.  I was in a very different zone.  I was a passenger.

After the scan, I was taken back to the changing area, but on the way the technician asked me if I wanted to take the report with me.  If so, could I wait for half an hour.  Of COURSE, I wanted the report.

I replied affirmatively, but emphasised “I will read it if I have it, perhaps my Dr would prefer to go over the results with me?”  However, I knew that I would take the report with me, and read it no matter what it said.  I HAD to know.

I returned to the changing area, which was actually a small bathroom.  I took my clothes from the locker and placed them on the side next to the sink.  As I removed the gown, I heard a brrr, brrr noise, and turned round just in time to see the automomatic soap dispenser beside the sink, happily dispensing soap onto my clothes.  I returned to the waiting area, shaking and with the remnants of liquid soap all over my blouse.

It did not seem like very long at all before the technician returned. I could feel myself struggling to keep it together as she handed me the envelope.

I repeated.  “I am going to read it”.

She said, it’s ok, you can read it and take it to Dr W2”.

Reading the words, seeing the result brought my guard down and I completely crumbled in the waiting area, weeping and clutching my reprieve.

This feels like a huge overreaction, now with the results and the reassurance.  I know that compared with so many I am hugely fortunate.  Not only did I have clear results, although the tumour markers will be monitored more frequently over the coming months, my nightmare was so much shorter than is often the case.  They might have four of the longest days of my life, but it was all done within those four days.  From the initial bloods, seeing four consultants, mammo, ultrasounds, CT scan, and review it took just over four days.  I cannot imagine the anguish that protracted investigations cause and I know I am lucky.

Of course there were no high fives in Dr W2’s office.  I know it doesn’t work like that.  More a sense of numbness, physical exhaustion and utter emotional depletion.

However, one comment on my last blog posting said it all.  “We get it”.  Yes, my results were clear, yes everything was done quickly but look at the emotional and psychological torture we go through to get there.  And there is no point at which we can say that we have absolute relief and reassurance.  Because it is only valid until the next round of tests and checks. Yes, as my blogging  friend said “we get it”.

That is my validation and reassurance of my reaction to this whole experience, and even although it has been over  only four days, it is massive and a Very Big Deal.