I just want to know. I need to know.

The back story.

My usual round of checks took place on Tuesday (7 April). As usual, I turned up for the blood draw, the appointment with the Endocrinologist, Oncologist and Surgeon.  But this time, I also had to report some spinal pain.  I have pain when sitting, and especially when standing up from a sitting position.  I knew I had to report this.  I knew it could be worrying.

The bloodwork was mostly fine. Cholestorol stable, sugar still slowly rising, tumour markers stable, INR a little high. Mr W2 was concerned about the spinal pain though. He has always checked in on any bone pain as my type of cancer can metastasize to the bones. Thus he likes to keep a weather eye on bone stuff.

So, unsurprisingly, on Tuesday he referred me for a bone scan.

That is where the mind takes over and I find myself in a difficult place to navigate.  And so I resort to writing it out.  I write to “download” what is going on in my head.  Not quite to make sense of it, as that is not possible. It is what it is.  It is not about comprehending what is going on in my mind, but about trying to release it from inside my head and draw off some of the pressure. I find that it also captures those thoughts and fears when I am in that space.  Once results are in everything changes, and although I can remember what I felt, the territory has changed.  Irrespective of the results.  It is that space of the “unknown” which is the most difficult, in my view.  Not knowing is excruciating.

I only had 4 days of not knowing, but it feels like an eternity.  In the next couple of posts, I share what I wrote while in that space.  Firstly, I am sharing what I wrote on the evening of the checks, once I returned to my hotel room after seeing each of the Doctors, with a wait ahead for the bone scan, and then the results.

This, I guess, is Part One of the story.  And a spoiler alert – you already know what happens, and that there is no bad news.  But when I wrote this, I had no idea what was ahead.

Tuesday 7 April

8.15 pm

What do you call it when you are so exhausted, stressed, worried, scared that a contradictory calm descends? When you are “beyond” the familiar heightened, palpable stressedness, that peak of anxiety? When all you can feel is a sense of resignation. A space far beyond the spectrum which spans optimism and pessimism. Or hope and despair. I have no idea what it might be called. I just know that is where I am.

I just want to know.

Is this back, lower spinal pain sinister or not? Is it caused by calcium depletion? Is it connected to spinal injury from years ago?

Or is it cancer in my bones?

I just want to know.

I am beyond fear, beyond anxiety and even beyond worry.

I just want to know.

I feel fragile yet strong. Out of the eye of the public, unprotected by privacy, the tears are too near the surface. I blink them away, force my thoughts elsewhere and remove myself to space when I can release, give in to this uncertainty and simply let those tears fall. But when I am alone, unwatched, the tears retreat stubbornly, as if I must keep my composure. Until I know.

I just want to know.

And soon I will know. Only three more days or so. In some ways it stretches, impossibly ahead. Yet in other ways, it is so close I can feel no anxiety about the wait. The wait, the results. Both are bound together. Inseparable.

I just want to know.

In the past I have found myself clinging to the waiting time, knowing that it might be the last days and hours of innocence before test results change life and move me into an unwanted space. Again.

It is different this time. The agony of not knowing is more powerful than the fear of knowing “the worst”. No matter what is ahead, I am simply beyond it.

I just want to know.

I

need

to know.

Backyard butterfly

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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!

Jigsaw puzzling

Slowly, slowly. Piece by piece, I am putting together a puzzle. Gathering, building, shaping fragments of ideas and thoughts into something tangible. Gingerly balancing between the tasks of planning and the delight of anticipation.

This past year or so has been hard, and pushed me to the limits of resilience emotionally and physically. This has been exacerbated by events such as the embolism conspiring to sabotage any opportunity to have a restful, healing break.

So I am cautious as I carefully share some ingredients of the puzzle I am working on, and the picture which is taking shape.

jigsaw plain

I am taking some holiday in the next few weeks. I am hatching a plan, a gentle adventure and escapade. I feel fragile so this will not be any bungee-jumping, jungle-trekking, kayaking or abseiling adventure, but a healing retreat. I yearn for the natural sounds and colours of the jungle, and the music of the breeze and the rains. I long to be surrounded by the elements and for my mind and body to be bathed gently.

It was not intended to be such a process, but this is taking shape in a fascinating way. I have been looking at specific parts of the break in a rather random and incoherent way. Little fragments at a time, with a broad landscape in mind, but only focusing on a piece at a time.

The framework has been fairly simple. I want to have a break over my birthday. I want to visit a country I have not visited before. In Asia. And just to further constrain choices, I want an easy, relatively short journey. Thank goodness Asia has so many options!

Happily there are a few more direct and even low airline options from Yangon to help to lay the background for this puzzle. A direct flight to Kuala Lumpur provided a very helpful foundation piece for the puzzle. I have not been to Malaysia before. Rather sad, given I have been in this region for thirteen years, but there you go! Quite convenient, for my planning. KL is not really somewhere I have been particularly drawn to visit, the images of the iconic Petronas Towers and sophisticated shopping malls not my first thought of a peaceful getaway. Until I saw the photographs and accounts of a visit to KL by my friend, and that presented a somewhat different impression. A fascinating old town, colonial architecture, museums and galleries. And besides, KL is not so far from jungle retreat and peaceful places. Definitely a viable basis.

The next part of the puzzle which provided the necessary foundation, was a recommendation from a friend for a little known place, a couple of hours north of KL on a tiny island. Not a beach location (it’s not really so far away from that seismic fault line which we have already witnessed rumbling) but a retreat in the hills, nestled in the jungle. I know it is monsoon season, and I know there will be a good amount of grey cloud. But the thought of the rains hammering down, drenching me and washing away those tensions and releasing emotions is incredibly welcoming and comforting.

Before long, these two pieces of the puzzle were in place, a single flight to KL and a five night reservation at the retreat. Many gaps were in the puzzle, but the start of a picture was taking definite shape.

And so the process has continued, making the planning as much a part of the break as the time away itself. I have picked pieces up and played with them, examining them to see if they would fit. Would a train journey back to Bangkok be a pleasant return? Or perhaps a transfer to Penang and flight back from there? Or what about returning to KL and the cheap flight back, direct? I played with these options over and over each having its disadvantages and advantages. The low cost flight’s departure at 6 am presented a clear contradiction – 4 am check-in a most unappealing close to a restful break.

As in any puzzle, the pieces are interdependent. Travel choices determine the range of accommodation options and preferences clearly determine those travel and accommodation choices. Another key factor, is the very real limit that there is in my mobility and the need to make sensible and comfortable choices.

Slowly the pieces are being placed. I will return from Penang, via Bangkok. One night in a pleasant guest house in Georgetown will gently prepare me for return. Prior to the island retreat, I will spend a few nights in KL, gently resting and perhaps exploring. And certainly downloading some long needed musical megabytes! Then the train to Ipoh, for a night. Stopover and possibly exploring of this city, before heading to the island early the next morning for the five nights of retreat.

Slowly, slowly I am arranging the various elements. A guest house here. A hotel there. Train tickets. Guide Book. Transfers. The pieces of the puzzle enough now for me to see the picture.

starfish puzzle

And the picture is one of rest, healing, recovery, discovery and revitalisation.

malaysia

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.Bangkok reflections

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.

All over the place

I am not sure where to start with this.  I am all over the place, and I have been all over the place.  And tomorrow I am going more all over the place.

My physical and mental beings are in limbo and transit all at once.  My mind feels as if it is the spin cycle of a washing machine.  Everything churning and spinning with no time to stop and reflect. No moment or opening to move forward.

I have just returned from a very short, intense and emotional visit to Scotland, with highs and lows.  Precious time with family, especially my father who continues to display incredible strength despite his frailty and years.  The sudden, cruel loss of my brother in law, stolen by a hiding cancer, believed to have been eradicated by the best of treatment completed only a few weeks ago. A long haul flight nursing a dramatically coloured and swollen leg, damaged thanks to pavement aerobics caused by an unfortunate combination of numb and clumsy Taxotere toes and a sneaky paving stone peeking up over its allocated territory. The rare gathering of close family over steaming mugs of tea and coffee and delicious comfort food. Hushed conversations. Rushed purchases. Heavy skies. Welcome laughter. Heart-wrenching smiles patchworked over wounds.

And as an unseasonal challenge Scotland organised blankets of snow over brave crocuses and daffodils as a  picturesque backdrop.

My return travel deposited me back in hot and sultry Yangon some 28 hours or so after I had left family in Scotland before sunrise in sub zero temperatures and into a sky full of snow waiting to fall.

Now, only a few days later, I am still not quite able to rest.  My half unpacked bag is now being re-packed ready for the short flight to Bangkok.  And the main reason for this unrest is the prospect of yet more checks. More blood draws from an arm so bruised I cannot see my own vein, scans to seek out anything which might be hiding and the usual investigation into anything which might hint at something sinister. I am exhausted with it all, yet I know it is what I need.  I know that without these checks, my mind darts into those dark, frightening places.  My Doctors and I are on the same page.  By the end of the week, I hope that I will be n the other side of this heaviness and limbo and able to move on in whatever direction that might be.  I know that my physical and emotional fatigue is colouring my spirit and mood.  I understand it. It just is what it is.

In all this turmoil and shift, this feels like the right time to change my background image.  While everything is so thrown up in the air, taking its own time for the different elements to drift back down and settle.

The sun sets on another workingn day at Yangon Central Railway station

This image speaks to me right now.  The sun is setting on a heavy day’s work in Yangon outside the Central Railway Station.  This woman is carrying her burden on her head, keeping her hands free and her posture proud. Her silhouette speaks of determination and strength, as it absorbs the soft rays of the sinking sun.

And of inspiration and clear direction.               In direct contrast to being all over the place.

Time for a nap!

This post is going to be a moaning one I am afraid.   But then, hopefully once I have offloaded, downloaded or overloaded, then I will feel a bit better!

It is nearly a week since the final scheduled chemo, and I cannot believe how tired and frail I feel.  I know that the blood counts get to their lowest a week after the treatment, so it is not surprising that I feel very weak.  It is frustrating though, that even standing for a few minutes is exhausting, walking any distance is difficult, and going up and down stairs pretty impossible.  My knees start to shake and I have to sit myself down at regular intervals.

And sleep!  Goodness, I think I could be sleep champion of the world!  I flake out at night, sleep for a good 9 – 10 hours and still need a morning and afternoon nap!  How skilled am I?

As for the outside world, I am pretty oblivious to what is going on.  This is probably just as well as my chances of getting chemo treat 8 have been significantly reduced because of the colourful activities affecting many parts of central Bangkok. I have made my choice of treat, though, and might have to be patient as I look at alternative ways of getting my hands on what I am after!  That will be the topic of another post, I am sure.

Now it feels like time for another nap – more soon!