Opening Up

Every time I think that the wild welsh poppies in my garden have finished blooming, I spot another blaze of orange, and more little buds shyly opening up. Just a few more days of colour, these persistent little poppies tell me as they gradually fade, and their petals fall. And the cycle continues, as I spot another few buds, the orange crumpled colour pushing the bud open for tomorrow’s bloom

Opening up crop

All the while, discussions continue and changes are announced of a wider opening up. Doors are opening, faces peeping out and families making tentative plans to gather. At an appropriate distance, and in small numbers. The world which closed so abruptly more than two months ago is slowly starting to open up, gingerly and not so gingerly.

I have mixed feelings about the opening up of the world, and the easing of lockdown. I am not ready. And I feel embarrassed to admit it. When I went into isolation it was sudden, and complete. Not a soul has been in my home, and my face to face interactions with other humans have been few and on my turf quite literally. Food is delivered on my doorstep, with my door closed. Anything which has been touched by the hands of another is subjected to careful sanitising and its own period of isolation. Conversations over the fence rely on warmth of words to compensate for physical closeness. Closeness and warmth on screens and blinking phones have strengthened and sustained. I have become surprisingly present in this new reality. Throughout these past weeks, I have become less fearful as I have built this safety shield around me. I find that I am not ready to dismantle it and allow the danger which is still lurking in invisibility to contaminate my safe space.

I am not officially shielding. I did not receive a nine-page letter which advised me to stay at home for 12 weeks and avoid contact with others. However, the public health announcements which I now know by heart speak directly to me and those who have health issues. Issues which make us highly vulnerable and at risk of very severe illness if we were to become infected with the virus. My shielding might not have been official, but it has been faithful.

I know that I am not ready to open up until I know how the pandemic responds to this easing of lockdown. This doesn’t mean that I find isolation easy. It means that my fear of the virus is greater than my struggles with isolation. I do not want to take steps which could place me at risk. Even if that risk is very low, the effect of the virus is no less dangerous. That is my rationale and emotionale.

I know many others who feel differently, and who are anxious to start opening up their lives and making those baby steps towards that elusive new reality. It is heart-warming to see plans announced and pictures of small gatherings, tears and smiles. Photographs and videos on social media of this new found freedom sing with the happiness of opening up.

Others are making bolder, nay riskier, step. Steps which cause intakes of breath, tutterings and mutterings. Steps which strike fear into the hearts of the cautious souls who are afraid of what cannot be seen.

None of us can truly understand what it has been like for others as we have experienced isolation and lockdown. For most of us, it has been emotionally demanding, tears appearing unexpectedly and inappropriately. Reactions disproportionate to their cause. For many, a difficult domestic situation suddenly became a dangerous one in precarious situation. Reports of domestic violence increased drastically. None of knows what is happening behind the closed doors of others. And none of us knows, how each of us feels about the uncertainty of the future as the lockdown starts to ease.

And so, while I can, I would like to open up at the pace which works for me. I don’t want to burst into colour suddenly. I am happy to peep out through the opening bud and just see how the land lies.

Once I feel that the outside is a place I feel safe, I will push through and step back into the world. But until I reach that point of confidence, I will stay in my safe haven, watching with joy as those who do feel ready, are taking those steps.

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.

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.

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

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.