Silence, a haircut and flowery shirts

I have been too quiet recently.  Silence usually means one thing in my world.  Worry. This week has seen the culmination of some full-on worry.  So I am very happy now to be able to provide an update. An update which does not contain bad news.

The key elements of the update are:

– A haircut.
– A Doctor in a flowery shirt, nay, an oncologist in a flowery Songkran shirt.  Because a Doc in a festive shirt can’t give bad news, can he?

Last year when I arrived in Bangkok Airport at the start of the Thai Songkran Water Festival, my passport was stamped by an immigration official wearing a flowery shirt.  That’s a first and I can tell you it made me smile.  All of the immigration officials were wearing flowery shirts and broad smiles. So a flowery shirt is a Good Thing. An oncologist in a flowery shirt is an unexpected thing. And indeed he cooperated by not giving bad news in his flowery shirt.

SongkranShirts
I still don’t now what is causing the spinal pain which has been troubling me recently, but a bone scan has ruled out metastasis to my bones.  Causes could be an old injury, calcium depletion (thanks to cancer meds) or old age.  Onc suggests old age.  I high five him.

Hence the hair cut. I never get my hair cut before hearing the NED words. NED – No Evidence of Disease. A haircut is an acceptance of NED. An acknowledgement that there is no imminence of nasty treatment.  Treatment which might cause hair loss.

As always, my preferred way of processing this mess that goes on emotionally is by writing it and there is a heap of blah coming in this space.  I have been scrawling in freehand in the waiting room, in my room at night and even in Starbucks after the injection of radioactive dye before the bone scan. Those scrawls capture what happens in a mind which does not know what the future holds.  They will be shared here very shortly.

But for now, there is no bad news. Just a very long overdue haircut and a Doctor in a flowery shirt and big smile.

Happy Songkran, Pi Mai and Thingyan Water Festivals to all.

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A silly cut finger and fast growing cells

The most inane and banal of incidents can set off a trail into unexpected territory both familiar and unfamiliar…….

Just over a week ago, hubby came home with a gift he had received.  A proper Swiss Army Knife.  Those ones with all the gadgets and tools all artfully contained in the body of the knife.

swiss army knife

These are fascinating little things, and I could not resist having a look and exploring what tricks it would contain.  I gently pulled out a little penknife blade, taking care with my crumbly finger nails which have no capacity to grip. I teased out the little scissors and looked around for some paper to test them on.  Then I pulled out another mystery implement, wondering what it would be. Snap! The small blade which it belonged to flicked open and caught my finger tip, slicing a neat but deep cut into the finger. There is an instant of regret at such a careless action which is rapidly taken over by the need to act.  Thanks to warfarin, this small but deep cut was producing rather a lot of the red stuff and I needed to stanch the flow as quickly as possible.  With my arm elevated and the wound held firm, I finally managed to stem the bleeding and carefully cleaned the damage.

I was very quick to blame cancer for the greatest part of this unfortunate incident.  Residual peripheral neuropathy, thanks to chemotherapy (Taxotere) has brought me numbness in my fingers and toes numb toes.  Numb fingertips cause clumsiness.  It is not a very good idea to explore a Swiss Army Knife with numb fingertips, especially with added crumbly fingernails. Adding warfarin and its blood-thinning qualities adds a frisson of excitement to the mix. That is also directly attributable to cancer and its treatment.  And if I really want to push it,  I can also blame the lack of wisdom in meddling with the knife on the cognitive afters of chemo.

It never fails to amaze me, how much a tiny nick somewhere like the top of the index finger can impact on so many every day actions.  Getting dressed, eating, typing and holding a pen all became awkward and uncomfortable with the damaged finger.

The following day, I struggled through (happily it was a Friday) and was glad to get to the weekend.  I was especially worried that the cut might get infected in this climate, and that it would not heal given its depth.

So I was very surprised that on the Sunday, I noticed that the cut was healing particularly well and cleanly.  By the Monday you could hardly see the cut at all and now there is just a trail of dry skin which marks the scar.

And that’s a good thing, isn’t it?  Fast healing, clean barely visible scar?  All good.  So why did my head turn this into something worrying?  Why did I find it so hard not to associate the rapidity of healing cells with the rapidity of multiplying sinister cells.  How does a good fast growing cell differ from a bad fast growing cell?

It shows how vulnerable we are to those paranoiac thoughts, to those trains of thought that are barely logical or sensible yet take over a rational mind. A mind which is especially fragile in the run up to the next round of regular but scary scans and checks.

This is the story of a tiny cut finger.  This is also the tale of a tiny scared soul, about to pack the fatigued travel bag, braced for whatever is ahead and barely able to contain the fear and anxiety.  The afters and sides of cancer and its treatments indeed continue to wreak havoc on the body way beyond diagnosis.

Yet that is not a fraction of the sabotage it introduces into a sensitive and frightened mind.

shadow selfie blog

Life is too short NOT to have funky toenails!

I visited Paris for a long weekend a long time ago, probably approaching twenty odd years or so ago.  Clutching my copy of “Pauper’s Paris” I craned my neck over the crowds to see the Mona Lisa, gasped at the traffic on the Champs Elysées from the top of the Arc de Triomphe, tip-toed around the echoey Nôtre Dame Cathedral, bought a twee little cut-out of my silhouette fashioned in seconds by a Sacré Coeur artist and sipped café noir from the terasse of the Café de Deux Magots. Classic Paris experiences.  But of course, no visit to Paris is valid unless you see the Eiffel Tower and I was eagerly looking forward to the spectacular view of the city from its heights.  I knew that the stairs would be a climb, but the lift seemed too speedy and exposed and I naturally opted for the low tech and cheaper option.

buildings-eiffel-tower-paris

By the time I reached two or three twists in the iron stairway it was clear something was not right.  My head was looking forward to the views, but other parts of my body were not cooperating.  I was shaking, my heart was pounding and my legs were unable to hold me.  Worst of all was a bizarre and severe dizziness.  I looked upwards through the iron steps and an overwhelming wave of dizziness and nausea paralysed me.  I was escorted down the steps slowly and gently to gradually regain my equilibrium on terra firma. It took some time for the shaking to subside and even a look upwards towards the top of the Tower would bring an instant return of the dreadful dizziness.

Eiffel Tower steps

And that is how I learned I have a touch of vertigo! I know now what sets me off, and that aeroplanes are fine, steep mountainsides manageable if I look at the landward side and that if I am up high and I can see through to the ground below me (for example through the slats in an iron stairway or bridge) then I am in trouble.

Being offered a job in Nepal in 2000 was enormously exciting, but there was one Big Elephant in the Room.  Nepal has hills, nay mountains and not just any old mountains.  The Himalayas.  I knew that my job would take me to remote parts of the country, often on foot.  And that would invariably involve crossing narrow ravines, which would involve breath-taking, vertigo-inducing suspension bridges.

Kalibridge

In my five years plus in Nepal I crossed more suspension bridges than I could count, and every single one was a challenge.  It was well known that I dreaded journeys which involved these bridges, but there was not an alternative if I wanted to do my work.  I gradually developed a technique which got me over the bridges  even if every single one prompted the same trepidation. I knew that it helped to have someone walk directly in front of me, taking up most of my immediate field of vision.  I would focus on the back of that person and not let my eyes see either steepness and drop on either side, nor the ground underneath my feet.  I needed to trick my eyes and get myself across the bridge without the involuntary prompt that I knew would launch into a full scale vertigo attack.suspensionbridgenepal

So recent thoughts on seeking balance, and the image of a tightrope was in fact one very pertinent. A few days later, in the weekly #bcsm Twitter discussion, the topic of balance arose and I was immediately struck by one Tweet which quoted a saying that “life is a narrow bridge” and the trick is not to be afraid.

“Life is a very narrow bridge. The important thing is not to be afraid” Rebbe Nachman of Bratslav.

This instantly resonated, especially in the space which I am in at the moment.  Life is indeed a narrow bridge, and is sometimes pretty precarious.  At the moment I am balancing so many different things across the spectrum of personal, health, well being and professional.  How can I find that spot on the narrow bridge where I feel that I am taking enough well-being time without the pressures of tasks intruding into the healing space?  How do I deal with all of the things which are piling up for me to carry on my shoulders as I walk along my narrow bridge? How do I keep my eye on the road ahead and avoid slipping down the steep slopes around me?

I am do not mind admitting that I am afraid or anxious. In two weeks time I will be drawn onto the game-show conveyor belt of the Big Checks moving from blood draws to mammo and on to X-ray.  Next stop probably ultrasound. Then through the doors of Dr W2 and my score will be given to me.  Will I qualify for a bonus round?  CT  Scan? Bone Scan?  MRI? Or will I be allowed to step off the belt and slope away to tally the totals and take stock?  Who knows.  Of course I am afraid.

It is difficult to take time to relax and build my resilience ahead of these checks while all around me is so incredibly busy. Seeking balance continues to be prominent in my mind.  My head is full of such an assortment of competing callings. I am trying to carpe the diem and not to drown precious days in the mundane and the manic.  Kirsty reminded me last week to “take time to sniff the orchids”. Indeed, so much is gained from a pause to breathe in simple goodness.

Which takes me back to the narrow bridge I am on.  I know that I can’t not be afraid.  However, I also know that there are techniques and tricks, which I can muster to minimise fear and distract me, in the same way as I get myself across the suspension bridges in Nepal.

The toenail trick is one such. Although my toenails eloped with Taxotere for a bit, they are back if a bit ridged and ugly.  Prime material for a bit of bling!

When I developed my wish bucket, toenail art was one of the easier wishes to pick out and realise.  The first toenail art I had, I loved.  Delicate cherry blossom-like art on my toenails, painstakingly created by a skilled young nail artist.  (Now would that not be a great job to have?) funky toenail art

That was the first of many varied toenail art experiences, all of which I have loved perhaps with the exception of the one which should have featured starfish, but more resembled the stars and stripes! I have nothing against the US flag of course, but it would not necessarily be my first choice to sport on my toenails!

Having funky toenails is a very easy indulgence to fulfil and one which brings a disproportionate amount of simple pleasure.  The toenail trick guarantees distraction and has resulted in an unexpected amount of attention.  Perhaps I am a bit too old for this kind of toenail trivia but I do not care.  Toenail art is one of the best tricks in the book to bring things into perspective and bring stillness to calm the vertigo induced by the current dizzying busyness and pre-checks anxiety.

Life is too short not to have funky toenails!

Life is too short not to have funky toenails!

After all, is life not far too short, not to have funky toenails?

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!”
paranoia

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.

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.

More than a broken camera

My little blue, point and shoot camera has given up the ghost and stopped working.  Recently it sometimes refused to start up, but with a sneaky battery boost it would forget its obstinacy and wake up. But now it has completely frozen, lens protruding and a malfunction message.  No pulse, no heartbeat. No response to resuscitation attempts.

And my mind is similarly paralysed, paranoia lodged firmly in my brain.  I am quietly freaking out.

I have just returned from a field visit to our project sites in a township in a remoter part of the country, and as always took far too many photographs.  Each time I switched on the camera, to capture a passing image or moment I nervously awaited the digital start up beep to tell me the camera was functioning.  Then on our flight back this morning, as I switched it on to snap a sight which caught my eye, I was disappointed that it gave a little warning “ting”.  A message told me there was a lens malfunction and to restart the camera.  Which I did.  Only to receive a repeat message. Again and again I tried.Nothing.  The lens is still stuck.  The camera appears to be dead.

I have visited this same township before. And bizarrely, the camera I had then started to malfunction while in that very same township. That was my old, faithful first digital camera, which had taken thousands of photographs in Nepal, Thailand, China, Mongolia, India, Sri Lanka, Kenya, Indonesia, Bangladesh, Pakistan, the UK and of course the early months in Myanmar. I had bought it nearly four years previously and had dragged it everywhere with me, loving the novelty of digital images. I especially enjoyed the fact that I could never run out of film.  But the screen stopped functioning during that visit, and all images were plain white. My camera had come to the end of its short but intense life, and has lain at rest in a drawer ever since.

My very first digital camera

My very first digital camera

The visit to that township was in September 2009.  Eleven short days after my return to Yangon from that field visit, with my defunct camera, I discovered a lump in my breast.  A few days after that I was sitting in consulting room No 59 in Bangkok’s Samitivej Hospital, the words “highly suspicious……… cancer….. highly suspicious…….. cancer………. cancer……… cancer” ringing all around me. The rest is history, as in the history of the feisty blue gecko entering new and unwanted territory. Within twenty days from my return to Yangon with my broken camera in September 2009, I had had major surgery and the confirmation that I had two tumours and cancer in six lymph nodes.

The neat little camera which has finally broken today, was a replacement for the camera which did not last after that earlier field visit.  And just to add the icing to the bitter tasting cake?  My cute, lucky blue, newly broken camera was my very first chemo treat.

My cute little blue camera - chemo treat No 1

My cute little blue camera – chemo treat No 1

My next round of checks is in directly front of me, and the associations between the first field visit, the broken camera and the word cancer echoing around the room, are too obvious for my fragile mind not to draw immediate parallels.

Add that to the recent raised markers and increased medical surveillance. Is it surprising that my mind has rushed into a dark space?  Is it any wonder that I am quietly freaking out?

Reason tells me that the broken cameras and that particular town are nothing more than a quirky coincidence.  But a sensitive mind darts into irrational places.  Particularly a mind which has already been pushed into dark corners it never dreamed existed.

Poetry Friday – “What if I were to tell you……”

What if I were to tell you……

What if I were to tell you, how scared I get.

What if I were to tell you, I think about it every day. At least once.  Though most days, so many times I lose count.

What if I were to tell you, it doesn’t get better.  Not really.  Just different.

What if I were to tell you, it makes me feel a hate so strong it stirs fear in my soul. Fear of my own hatred.

What if I were to tell you, I will never be the same again. I know.

What if I were to tell you, I wake in the night, wet tears reminding me. When I thought I had forgotten.

What if I were to tell you, that every twinge, every hint of pain brings a sweeping new dread.

What if I were to tell you, that hearing it is my fault ignites a fire of anger in my gut.

What if I were to tell you, it is just not as simple as “moving on”.

What if I were to tell you, that long after all around me have forgotten, it is my first waking thought.


What if I were to tell you, that once you hear that word, the mirror shatters.  The life you knew evaporates.  Replaced by a parallel, silent, world.  One built on assumptions.


What if I were to tell you.  And you were to hear me.

And understand.

Balinese lily illuminated by candle light

©  PCR 9 January 2013