Diversity and light

Today is 31 October.    According to my friend Wikipedia, it is the 304th day of the year (305th this year because it is a leap year) in the Gregorian calendar, and there are 61 days remaining until the end of the 2012.  It is also Halloween in many places, with all that entails.

Apparently, it is also National coat of Arms day in Ecuador (oh I just love Wikipedia for teaching me my new things for many days).

And of course, it is the final day of Breast Cancer Awareness Month.  There is lots of discussion about that around me.

The day has many significances to us, in our different locations and cultures, but also in our own sense of where we are at a particular time.  Over here in Myanmar, we have been marking Thadingyut, which brings the three months of “Buddhist Lent” to a close.  Yesterday evening I was welcomed home in the evening by rows of tiny candles around the gate, down the drive and around the house.

Houses nearby were bathed in light from candles and fairly lights.  Fireworks louder than thunder crashed across the sky.  The full moon sat heavily behind a mist of light cloud.  There was a real air of festivity and spirituality around.  The period of Buddhist Lent begins with the Waso full moon which usually falls in July and continues through the monsoon.  This is a time when people are busy tilling their land and planting the paddyfields, and monks will not travel but stay at their monasteries.  During this time, it is believed generally to be inauspicious to marry, to move house or to enter generally into a new venture.

Hence the feeling of thanksgiving and celebration in the air over Thadingyut.

This reminds me that I have a great deal to be thankful for.  I am living and working in an amazing place at an amazing time, and able to experience such rich diversity.  And even more thankful to be here after the last round of checks and scares.

Happy Thadingyut!

Time for Cake!

Today is another landmark day.  Three years ago today, after yet another sleepless night with the weight of too many thoughts crowding my post diagnosis headspace, I took the plunge.  I had already been blogging as Feisty Blue Gecko for a couple of years, but needed a new online space for the new real space I had stepped into.  And this gecko-flavoured breast cancer blog was duly hatched.

Last year, on my second blogaversary, I wrote a long post with some background detail, and characters which have evolved as the blog has taken on a life of its own.  It is quite a blogossary.

This morning, I took a big step back in time, and visited that very first post when I dipped my toes into the blogospheric waters. And this is how I saw things then, on 28 October 2009:

This really is a record of the unexpected.  I don’t know where it is going, and I don’t know how it will look, but life changed 3 weeks ago and I have a lot to get off my chest.  Quite literally.

And the purpose of this?  To help me process and deal with what has and is happening.  To share one experience of what is a very common disease.  To tell my story as it unfolds, in a way that helps me.  And the rest…………….

This is the biggest and scariest challenge of my life.  Breast cancer is unknown in our family and I have not really been close to anyone while they have been fighting cancer.  But I have such a lot going for me, this is not going to be a tale (tail) of woe, (well maybe sometimes), but a rise to the challenge.  I have such amazing support – I am not in this alone.  I also know that much of this will be revealing and personal, but I have been encouraged by the number of other blogs by women with breast cancer so I think I’m entitled to have a shout too!  We are all different and I know my perspective will be different.

This part of the story starts on September 23 so there is a bit of catching up to do.  I will try and fill in the details and bring things up to date but it will take a bit of time.  This is partly because so much has happened, and partly because I am feeling the grand theft of many lymph nodes from under my left arm which makes typing slow and full of mistakes.  And partly because there is so much going on in my head which, as I said above – I need to get off my chest!

28 October  2009

I could never have imagined how important the blog would become in my life, and how many incredible people I have connected with, the friendships I have formed and the lorryloads I have learned.

And here I am, after three years.  Still writing.  Still ranting and venting.  Still reflecting.  Still making friendships and connections.  Still processing and deliberating.  And still getting a great deal off my chest!

So this is one to celebrate.  I even Googled “gecko cake” because it is much sweeter than Googling “is-this-funny-mark-a-sign-of-cancer?”

And guess what?  There are heaps and heaps of images of gecko cakes!  And not only gecko cakes, but even a gecko shaped cake cutter! Who would have imagined that?

So, thank you dear gecko and dear blog.  Here’s to many returns of the day, and many more years of irreverence and feistiness together!

Different shades of pink

When it comes to Breast Cancer Awareness Month, I find myself confused and conflicted. I have been kind of sitting this one out this year.  I read and take on board the apparent hi-jacking of the ribbon, particularly in the US and the contradiction in the small amounts of proceeds going to breast cancer work, in particular research into metastatic breast cancer.  At the same time, my heart is incredibly warmed by close family members supporting pink ribbon ventures and adventures. I hear the arguments that in some contexts, there is inappropriate marketing and commercialisation.  I believe it is not an “either/or” situation or awareness versus research.  Until Breast cancer touches us, we tend to close our senses to awareness.  Added to that, it seems that there are huge swathes of populations the messages
do not reach or choices are not there.  Equally, there is a glaring lack of research around metastatic breast cancer (MBC).  I am woefully uninformed about research into MBC, particularly over here, so am not going to even attempt to discuss that.

But I want to focus on where I am, right here, right now and share some thoughts and observations, purely on awareness and its connection to pink. There is already more than enough for me to say about basic and real awareness.

I flagged down a taxi outside the hospital in Bangkok on Day One of the checks, to head back to the hotel.  The taxi was bright pink.  Now actually that is not unusual as many taxis in Thailand are pink.  Some are green and yellow and a small number are blue, orange or other colours.   But the majority, to my eye seem to be either pink or green and yellow. However, what struck me particularly about this taxi, was the upholstery which was a bright shocking pink!  That is far less usual.

Having just drawn away from the hospital doors and their Pink October campaign, and being surrounded in the blogosphere by a range of views and discussions around pink and the pink ribbon, my mind was swirling in confusions and associations.

Pink is a very auspicious colour in Thailand, and I would be very surprised if the first meaning associated with the colour is anywhere near breast cancer.  People wearing pink t-shirts can be seen in swathes in Thailand,  as a sign of support and respect. So in Thailand, pink already has differing significance and there is a wealth of pink in sight.   In terms of Breast Cancer Awareness, there is a level of pink ribbon presence, but I have yet to see inappropriate or broad sweeping pink ribbon marketing.

Then something interesting happened.  In my bonus days in Bangkok, for the extra scans and work, I escaped for some numbing, only-looking shopping time to one of the big malls. My eye was caught by a card display, with lovely geckos on the front.  The cards were printed in brightly coloured, good quality paper.  Each set came in a grouping of five colours.  Of course, including blue.  So one of the five cards in the set was the most beautiful image of a group of very feisty blue geckos.

I had to have a set. I took them down and examined them, with their lively colours, heaps of attitude and little gems to accentuate the artwork. And then I saw this:

“Supporting Breast Cancer Outreach Projects”

You have to remember that I live in an environment where there is little “pink ribbon” marketing, so to see this was incredibly warming.  Not to mention, uncannily pertinent! This does not appear to me as commercialisation or exploitation of the  pink ribbon.  Jaab is a fair trade company and a proportion of the proceeds go towards a variety of Breast Cancer Projects.  In particular, there is a focus on outreach work for women in marginalised or difficult circumstances.

My views on pink ribbon marketing are no secret, and not exactly mainstream.  More like slipstream.  I am keenly aware that the marketing seems to exist in extremes around the globe.  Here, awareness seems to be much more tightly linked to the pink ribbon that it does in more commercialised contexts.

After the checks in Bangkok, of course, I returned to Yangon.  I have already written a fair bit about the void there is here in terms of awareness and marketing.  It is not my intent to repeat what I have said earlier, but rather to add to this. I ran a short session earlier this month with a group here and showed the pink ribbon as part of the introductory discussion. Not ONE single person knew its association / designation of breast cancer. Not one. I knew awareness was in a different place, but this really shook me, and shows just how incredibly inconsistently the pink ribbon is known and used around the world.  We went on to discuss some basic awareness including signs to have checked, and again talked explored beliefs about causes and risk.  Many believe that wearing old and tight underwear is a cause, and that it is a disease which mainly affects unmarried women.  For me real awareness is just that. REAL awareness.  And it is so important here, for example, where much is very different, yet the disease impacts cruelly and indiscriminately.

My plea is simple.  All I ask is that we remember that awareness varies enormously, as does the use of the pink ribbon and merchandising.  There are so many different shades of pink.  And perhaps we can learn about different ways of balancing marketing with awareness raising from unexpected sources.

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.

The retreat

I am not sure where or how to start this post.  I have been silent on Facebook, failing to Tweet and there has been no blog post for just over a week.  I am a reasonably predictable soul and silence, as I have mentioned before, is usually not an indication of a peaceful state of affairs.

It has been a very rough and very long week.  I am still processing everything and the detail will follow.  However, I would like to give at least a very short update, as my last post referred to the imminent “Big Checks” in Bangkok.  And my silence has had everything to do with these checks.

As usual, I  had the usual bloodwork, mammo, Ultrasound, physicals and questions.  My bloodwork showed some elevation in one of the tumour markers and my oncologist, Dr W2, expressed concern. My two days of checks suddenly stretched into the best part of a week, as I was sent for CT and bone scans and then review.  My mind has been in very dark places and I am physically and emotionally exhausted, as well as so tired of this whole never-ending drama.  But most of all, I am relieved. Hugely relieved. For now.

I cannot describe how I feel on receiving the results. Numb. Drained. Relieved. Highly emotional.  There is no elation, no wish or will to celebrate.  Finally I can exhale, for now, as the markers will be monitored over the coming months.  I also feel guilty, especially when I know others whose cancer has metastasized.  How I hate this disease.

Tomorrow, 13 October, has been designated as Metastatic Breast Cancer Awareness Day. Still, not enough is known about metastatic breast cancer.

There’s more to Twang than Twang Arm!

It is another Big Landmark Day today.  On 5 October 2009, I had the surgery which would confirm the diagnosis of breast cancer which makes it three years since my mastectomy, three years of extreme lopsidery and three years since Twang Arm came into my life.

There is no love lost between Twang Arm and myself and not an ounce of respect afforded in either direction.  So I want to upstage Twang Arm in a mischievous kind of way today.

The idea came to me the other evening, when I was preparing to go to my writing group. We had set ourselves an assignment and (as too often happens) I was delving into my writing archive to find something to take along.  So often as the day of the group approaches, either I am scrawling away at the eleventh hour trying to finish it, or conceding that I have not created anything fit enough to share and digging deep to find something from past writing.  As I had been out of Yangon, in the capital the previous week and into the weekend I had had even less free time to write, and I resorted to the archive.  I went back a number of years, to my time in Nepal when I found so much inspiration around me, observing little snippets of ordinary daily life, and sharing this.  I was rapidly enveloped in nostalgia re-reading the writing and remembering those numerous moments.  Very like our recent “celebrating the ordinary” challenge which Marie of Journeying Beyond Breast Cancer laid before us.

And I found this poem below, which I had written years ago and completely forgotten about. Memories flood back of the Kathmandu streets and the calls of what I termed the Twang Man”  as monsoon retreats and the cooling temperatures of the approaching winter.

The man with the strange twanging instrument

Outside the bedroom window

along the busy path

of soft mud

swollen by endless weeks

of the season’s monsoon rain,

the morning traders pass

calling, singing, tempting

all to trade with them

Wheeling bikes

laden with fruit, vegetables, fish

to sell.

Bamboo mats, rice nanglos

small matted stools

for us to buy

empty rice sacks, bottles

to collect for a few rupees,

pressure cookers, gas stoves to mend.

A new noise

unfamiliar

competes with their calls

Twang! Twang! Twang!

Who is that man?

What does he carry

against his right shoulder?

A strange wooden object

with a music like string

which he plucks at

as he walks silently

along the lane

Twang! Twang! Twang!

Soon he is seated

in a neighbour’s yard

silently, patiently teasing

the wool filling of the winter quilts,

freeing them of their dampness

brought by the summer’s rains,

repairing them for the coming cold

readying them for their winter work

protecting young and old alike

from the penetrating night time chill.

As the rains slowly come to an end

the man who brings the twanging sound

visits so many streets, yards, homes

silently patiently

day by day

as the skies become clearer

and the cold creeps daily closer.

His work ensures that

each family will sleep

in the warmth and comfort

of the freshly repaired quilt.

In these short autumn weeks

shawls, woollen hats and socks

slowly appear on the city folk

as he readies them

for the night time cold.

In these short weeks

he must earn

enough to feed his family

for the coming months.

Outside the bedroom window

along the busy path

of dried, cold, dusty earth

cracked by daytime sun and night time chill

the morning traders pass

calling, singing, tempting

all to trade with them.

Less one familiar sound

Twang!  Twang!  Twang!

 

Coincidentally this is also Twang Man’s season in Nepal, and if I close my eyes and let my mind drift to the Kathmandu streets I can hear his call.

The line in the sand

I have been approaching this day with very mixed feelings.  It is such a bittersweet day, and one that is still etched very sharply into my mind.

Three years ago today, I heard those life-changing words from Dr W.  Reviewing my mammogram and ultrasound, he so very gently told me “this is highly suspicious of cancer”.  That was the very moment, when a line was drawn in the sand.  A line between life before cancer, and life with and after cancer.

And here I am, three whole years now since that line was drawn.

I remember reaching my first cancerversary in October 2009.  It was a major milestone, and I marked the day be preparing a letter to cancer  and by spending a quiet day.  Last year, my reflections were around what had been lost and what had been gained “thanks” to cancer.

For this year I was uncertain how I would mark the day, and how the obligatory cancerversary blog post would be shaped.

Then, a couple of weeks ago I saw a link from Livestrong, with the information that October 2 would be designated global LIVESTRONG Day in recognition and remembrance of those diagnosed with cancer.  That hit me like a brick.  Livestrong day on MY cancerversary?  What are the odds of that, I wondered?  (OK, I am not a great mathematician but I realise that in this leap year, the odds of the day selected being my diagnosis anniversary are of course 366:1)  Part of me was silently flattered, as if I could take some kind of credit in the designation. As if indeed.  But part of me felt almost resentful, in that I would have no choice in how great a prominence I wanted to afford the day.

While this reflection and mental to-ing and fro-ing was going on, there was something else bubbling away too, something else influencing how I would approach this cancerversary.  That was my other life.  I have been really very busy!  Busy at work, busy at home, busy swimming and cycling and busy hanging out in the lovely Tea Salon. There is a great deal going on at work, I am part of a Book Club, have joined a Writing Group and goodness knows what else.  Things which had been either on hold (during active treatment) or impacted “thanks” to cancer.

So the day has bee in many ways an ordinary one, yet also an extraordinary one.

As usual, I woke early (before the alarm) at 5.15 am and prepared to head for my swim.  I left home a little early, so rather than head straight to the pool, I took a circuitous route, exploring a few lanes I had not ventured down, and taking a bit longer to reach the pool.  I had a glorious half mile swim, showered, cycled home and sat myself down at my laptop while I breakfasted.  That is a bit of a Tuesday routine as I catch the #bcsm (Breast Cancer Social Media) discussion before heading to work for a regular if busy day.

So all pretty ordinary really.

But not completely ordinary.  My handphone rang around midday with an unfamiliar number.  The woman on the other end of the phone had called on the suggestion of a mutual friend.  My heart sank to learn of her diagnosis with breast cancer.  Oh, how I detest this evil disease, as yet another person crosses that line in the sand.

Later in the day, my phone rang again, and again with an unfamiliar number.  The caller asked if he had reached the “me” who he had worked with in Mongolia, a Nepali and his family who we had befriended during that year.  And my heart was instantly warmed to learn that the family have just arrived in Myanmar on their latest posting.

And that is so typical of the rollercoaster of life after crossing that line in the sand, a day exemplifying the ordinary and extraordinary all wrapped up in one along with its extremes of emotion.

I am also maintaining a sense of keeping this cancerversary low key for another important reason.  And this is because this time next week I will be in the midst of my Big Annual Checks.  It would feel like tempting fate to blow a bugle as I reach this milestone.  I would keep that for after the checks, and the event that NED and I have our collaboration renewed.

The tone I feel today, both recognising the cancerversary No 3 and the outset of Breast Cancer Awareness Month is one of quiet reflection, remembrance and respect.

Today, this month and every day, I  remember those who have been stolen (men and women) by this cruel disease, advocate that all have access to good treatment and care, remember those affected by other cancers which don’t have the same prominence or attention, and wish above all that a cure for all cancers be identified.