The sounds of a soul, gently healing

Grumbles of distant rain clouds echoing from the hills

The ticky tacky steps of a spider, scurrying across the dust.

Gleeful, haunting melodies of mynahs calling across the jungle canopy

Gurgles of a chubby rain drop slithering onto a welcoming pebble

The whisper of a lazy breeze stirring shy bamboo stems

 

The barely audible gasp of a frangipani blossom as it lands on the surface of water

The sigh of a leaf riding on the breeze, pausing, twisting, as it glides to the ground, guided by invisible fingers

The catch of air in a butterfly’s wings, as it alights on a leaf

The almost perceptible murmur of a hibiscus flower, rearranging its petals, as it turns to reach towards the sun.

 

The scream of a single, sweet teardrop, escaping, unsolicited.

 

 

Stop.

 

Still your breath.

 

Still your very being.

 

For these are the gentle sounds,

of a soul

quietly healing.

 

Frangipani blossom, drifting, casting its shadow on the tiles of the pool.

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Future tenses

I have arrived.  I have no idea, and no good reason for this being my very first visit to Malaysia despite living so near for over a decade.  All I do know is that I am here now, and very glad to be.

I think that the impression I have always had, particularly of Kuala Lumpur, has been that it is a highly modern, futuristic city with of course the iconic Petronas Towers.  Now I am kicking myself that I have waited so long!  It is an incredible city, with a rich mix of architecture and culture.

So what could be more fitting than a sneak preview of the many photos and tales to come, with a change of background and some funky pics of the futuristic Petronas Tower high above the skyscrapers on the skyline, such as this one reflected in the table I was sitting at the first evening I arrived in KL.

A classic view of the Tower itself, for the current background.

And a couple of “preview” images of the diversity that is KL with a promise of much more to follow.

This year has taken such a toll, and although I continue to struggle with the heavy side effects of potentially life waving meds, as well as that overbearing, ever present grief, it is good to have a diversity of surroundings such as the KL setting.

A setting to inspire and remind of the past, the present and the future.

A break?

These past few months have been tough ones,  physically, emotionally and whatever-elsely.  Any leave I have taken has been related to either medical or family matters and so I have been approaching this break with some anticipation, if not desperation!  The plan was a cunning one.  Given that Friday and Monday were both Public Holidays here, I decided to finish up on the Thursday evening and then take a few days as a buffer before the hankered after healing trip to Malaysia…..  In those six days between finishing work I would relax in Yangon, take time to prepare for my break and take care of a few tasks which I have not quite managed to work through.  You know the ones, the not-urgent-so-they-get-put-to-the-side tasks.  This included tasks which although not quite urgent are still important – setting up a scholarship in memory of my father for the Tall Ships Youth Trust, overdue and unanswered correspondence, medical reimbursement claims, a heap of boring-yet-important paperwork tasks.  It also included planning and dreaming time (the “focus” part of my three words for the year) and regrouping in terms of creative and personal priorities for the year.  It included catching up with friends and having lazy lunches and coffees in Yangon’s nicest spots. Great plans for a few days pre-holiday break.

So I was not expecting the assault which was waiting in the wings for me  As I tidied and wrapped up priorities and essentials around me on Thursday I was aware that I had the occasional sneezle.  Now my sneezles, I like to think are rather dainty, little soprano “aaa-teeeesh” sneezles.  The type that can break windows and crystal glasses.  The ones which were appearing on Thursday however, were deep Pavarotti-like “HHHAAAAAA-TRUUMPH” thunder claps, so unlike my own that I could have been convinced that I had been taken over by a dozen tenors with hay fever.  It did not happen too frequently though for me to give it much attention, and I handed over my work tasks, worries, tidied my papers into a single “welcome back in two weeks” bundle and spent a pleasant Thursday evening with a friend.  I still had the occasional sneezle, but nothing really of note and although feeling very tired, reached home later with no inkling of the impending ambush.

I had probably only been asleep around an hour when I realised that something was brewing.  My nose was becoming really stuffy and there was a familiar discomfort on breathing which heralded some kind of upper respiratory cough/cold ahead. By the time morning arrived I was in some sort of meltdown.  Some very nasty virus had clearly taken quite a hold. My body was already fighting the abscess, which had required a change in antibiotics, and I knew I was run down and tired.  The perfect welcome committee for what would normally be a tedious, run of the mill infection.  It was frightening just how quickly and how low this knocked me down. I completely lost four days, four whole days to feverish dreams, painful coughing, streaming eyes and nose and debilitating weakness.  Half of my face (or so it feels) has been taken over by an angry cold sore the size of a Pacific island.  I can’t even remember the last time I had one of these wretched cold sores.  I don’t believe I have been laid quite so low since the chemo days.  Indeed, the last time I lost so many days was during a bout of pneumonia when my white cell count lowered enough to let that across the threshold.  But even in those days, I was able to get myself dressed and out to the Doctor for twice daily intravenous antibiotic infusions.

I am not sure where these past four days disappeared to, but they did evaporate and finally today, I have felt well enough to raise my head, dress and even tiptoe gently out of the house.

One of the delights of living in Myanmar is that there are so many ways of pampering yourself which are affordable and easily accessible.  At the end of our lane there is a small spa or beauty parlour, I’m not sure how I would term it.  However, it classifies itself, it is a haven for tired and flagging souls.  I decided that my first venture back into the outside world would be for one of those luxurious hair washes which are so much part of life here.

It is not far to walk, but probably just the right kind of distance.  Near enough to cope with wobbly legs, but far enough to at least feel as if I am stretching those muscles just a little.  With the abscess and then this lurgey, it has been nearly two weeks since I have been able to swim or cycle so gentle exercise is sorely needed.

I turned up on the doorstep of the spa, and requested a tea tree oil hair wash as the scent is reminiscent of eucalyptus and so soothes those airways beautifully.  Quite why it also smells like a giant “after eight” mint I am not sure, but it does and I tend to imagine I am wallowing in one of these mega treats! The visit was rounded off with a tentative acknowledgement of my forthcoming trip – holiday toenails.  This week I seriously doubted whether I would actually be well enough to travel and whether it would be wise.  Feeling confident enough to have my toenails done is the most significant, yet seemingly trivial, signal that I finally feel well and confident enough.

And if I feel well enough, confident and have holiday toes?  Then I had better start packing sometime soon……..

Blurred vision

We are slap bang in the midst of rainy season here in Yangon.

The season is characterised by blurred images, through rain-streaked windows.

Windows are steamed on the outside and the rain is warm.  The air is thick and sticky.  And everyone adapts to a different daily routine throughout the rainy months.

I am wondering if the onset of rainy season, coupled with the change of Femara “diet” is playing a part in those side effects getting worse.  I am not sure of that, but I do know that the topic of Tamaxofen and Aromatase Inhibitors (AIs) and their glorious side effects is not one which is going to slip back easily into the box.  I experience that duality and contradiction of feeling comforted not to be alone, but sad that so many are dealing with these side effects when I read Nancy’s discussion on the very same topic.

Nancy and I seem to be telling a very similar story. AIs can bring very difficult side effects. Not to everyone, and none of us know how they will affect us, but to many. When the side effects become very debilitating and painful, it brings the challenge of making a very tough decision about continuing them or not.  As the discussion sparked on the comments on Nancy’s blog post itself, and on her Facebook page shows, everyone has their own take on this.

We just do not have that guarantee that they will keep cancer at bay or under restraint.  What we have is statistical probability according to our own pathology and cancer profile. Taking the AIs could be what puts us over the line in terms of favourable probability. This might just be the ticket which keeps cancer at a distance.

And so the decision about whether to weather often very painful and highly debilitating side effects or not is not straight forward or clear.  Everyone has the right to make the decision which is right for them and for that to be respected.  It is a judgement call, and an individual one.

However, none of us can see a picture in that crystal ball, and what is within that blurry vision.  We can only do what we trust is right for us.

Countdown

I am counting down, ticking off the days and nights until I head on that break that I crave.  In 12 days, and after 12 sleeps I should be heading to the airport with my faithful little travel bag, passport, guide book and tickets.

In some ways I cannot wait.  In other ways, I am glad of this countdown.  It gives me time to prepare and savour the anticipation of my break, ensuring that it stretches out for longer than the days themselves.

But there is another reason that I am glad of this countdown.  Last year, over around seven months,  I was plagued by a run of nasty abscesses.  The last one was in December and was dealt with in the emergency room in our clinic in a procedure that used sharp stuff.

I thought we had been able to banish these unwelcome visitors and for the past six months have been glad not to have had any re-visitations.  Until this week.  Unfortunately an abdominal abscess has formed and today I had to unwilling cart it off to the clinic, gritting my teeth and bracing for more nasty sharp stuff.

I am not sure if it is a good thing or not, but the offending infection is too deep to be able to deal with it in a straightforward procedure, so I have had cultures taken (using sharp stuff) and came out clutching a very painful stomach and a prescription with three elements to it.  Those three parts show just how well looked after and understood I am:

1. Antibiotic to blast the nasties
2. Review and follow up, including monitoring of my PT/INR levels (the clottability levels affected by Warfarin, which can be reduced by antibiotics)
3. Bonnes vacances!

How sweet is that?  My Doc actually took the trouble to prescribe me Happy Holidays!

So I am glad of these days of countdown.  I know I will be well monitored and there is time to make sure I am fit and ready for the break in store.

Or else!

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.

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.

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

The Visitation

So, while all the grump and rant was going on about the Femara side effects and the afters of treatment, just to ice the cake, I have had a Visitation around the same time. Only now am I able to share that.

The first element of the Visitation became evident not long after I had posted the aforementioned “thanks, but no thanks” rant. Possibly this was retribution?

I had an infuriating itch, under my prosthesis. I absentmindedly swatted at some invisible irritation for a while, before heaving myself off to the bedroom and having a look at what was bugging me. Perhaps literally.

There was some clear irritation – possibly a bite, but it was incredibly itchy. I did not scratch, but tried to soothe the area and willed it to stop itching.

When I looked at it properly, my heart stopped. There was a mark, the approximate size of a cigarette burn, less than 2 cm below my scar. Let’s call it a wirple – after all we have been here before. The “wirple” was red and angry and weeping slightly, as if it had been scratched and clawed at. But I had not been scratching.

I have been aware that Captain Paranoia has not been very far away even if he has not been as intrusive and troublesome as he has in the past. He has been there, as a presence, keeping me on my toes, but not actively pursuing me.

But here began the serious part of the Visitation.

On seeing this new wirple, Captain Paranoia leapt into action. With one single bound, his feet were on my shoulders, as he leaned right over my head and pressed his nose, upside down, next to mine his eyes glinting. His gloved finger jabbed at the wirple with jubilation, as he pulled my ears and tweaked those fine hairs at the base of my neck to make my eyes smart.

From my shoulders, he leapt on to the floor, dancing around, high fiving himself and my wirple alternately. “You know what that is?”, he was screeching? “It’s skin mets, hah!”

I did not need to be prompted. Such a mark on my skin near the scar is automatically worrying. The scar represents the whole area which was home to my left breast. And two tumours. And Paget’s disease. Which tells clearly that the skin and not just “stuff inside” was malignant. The scar which intrudes even into my right breast shows clearly that the margins needed to ensure that there was no evident cancer in that area, had to be radical. There was little flesh left, and only a thin covering of skin over my ribs and the extensive removal of cancerous lymph nodes to remind me that cancer had taken quite a hold.

So it does not take an extreme leap of thinking to acknowledge that although surgery had been radical, chemotherapy as great a regime as was possible and radiation extensive, the possibility of cellular cancerous activity is entirely within the realms of possibility. Especially so close to my scar.

On Monday morning I took a series of photographs. There was no point in heading to my doctor right away, but by recording the wirple I could at least show if it was progressing.

On Tuesday morning I took more photographs and compared them with the previous day. The wirple was most definitely still there. It had changed from an angry, slightly weeping area to an equally angry but enclosed wirple, with a crusty top. Just like a cigarette burn. Shit! Double Shit! This was not looking good. Captain Paranoia was by now living on my pillow, tweaking my earlobes if I dropped off to sleep. Whispering in my ear. Just check, he was telling me. Just have a look at the Google images. Dr Google is on standby. Go on!

I cannot tell you the reserves of determination (and fear) it took to resist that temptation to look at images of skin mets from breast cancer. I remembered consulting my doctor here in Yangon when the first wirple appeared and together we looked at skin mets images. And were marginally reassured. But this wirple was different. The last one had been a slightly hard area under the skin, painful as well as itchy, but not inflamed or weeping. This one looked sinister to me. The crusty area scared me. And the location terrified me.

On Wednesday I took more photos. I had swum that morning and the crusty scab had fallen off (sorry about gross detail, but heavens above, this is cancer we are talking about and cancer does not do genteel!) The area was no smaller, but equally it was not larger. I needed to monitor this to see if the crust and scab formed again and if this changed in size.

This Visitation was in full force.

On Thursday I took more photos. The area of the wirple had not increased or looked as it had decreased. It also just seemed to me a tiny bit less angry. Cancer does not get better, it gets worse, generally, Dr Y had advised me when wirple No 1 had appeared. This was not significantly better, but hey it was not worse.

I allowed a minor exhale.

Briefly.

Captain Paranoia was still urging me to consult his sinister partner, Dr Google. And finally I did. I am sorry, but I did. But hey, I am proud that I waited until the wirple was either stable or lessening. That has to be progress – right?

The crust had not re-formed. The wirple was less red and angry. It was not getting worse. Nor was it getting significantly better.

On Friday I again rose at dawn. There was some drizzly rain. Out came the camera. More photos of the wirple. It looked, dare I say – slightly better”? Perhaps less angry? Perhaps not so big? It was very hard to say, but I was glad of my photographic record of its journey.

By Saturday, finally I exhaled properly. It was clearly disappearing gradually. Captain Paranoia sloped off to the wings. He is still there, and jabbing unhelpful suggestions about the joint pains in my knees and elbow, but at least he has stopped that infuriating taunting, his face is no longer pressed against mine and his horrible creepy fingers now not pulling at those sensitive hairs at my neckline.

I cannot completely exhale, as I know that this wirple has to be monitored and reported to Dr W2. But it has not got worse, and has changed from an angry crusty wirple to a tiny, more healthy pink mark.

On the face of it, this has been a very minor tale of a probable bite on very sensitive skin. But in fact it has been a much greater tale psychologically, particularly in its timing. This has been another encounter with our deepest fears and a major Visitation. I am sure that this is not the last, but I for sure wish it were.