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.

The Winds of Change

The winds of change are definitely in the air.  The days are becoming drier, more sunny and very hot.  There is still a good amount of rain, some torrential, but the skies are looking different.  There are swathes of blue, punctuated by white, grey and inky black cloud formations. It is a beautiful time of year, the vegetation lush and rich from the rains but now set amidst bright sunshine and clouds with character and feist.

As I discussed in my last post too, it another season is newly underway.  Personally, it is my anniversary season.  In only two days time I will silently and sombrely recall the words which changed life forever for me and those close to me.  The “this is highly suspicious of cancer” words.  Those days were followed rapidly by surgery, pathology reports, chemo and all the attendant extras that these entail. It is a rough and stormy season and one which I will be glad to be on the other side of, just like a rough storm indeed.

It is also a season which is becoming increasingly divisive within what is a close and highly supportive online (and offline) community of breast cancer veterans.  (Hmm – apart from the war and fighting associations – I think I might prefer veteran to survivor as a term?  A veteran being anyone who has crossed over the “you have cancer” line….  just thinking out loud here).  The season is of course Breast Cancer Awareness Month (BCAM) – often called Pink October.  I personally believe, looking at this from a global perspective, that there is no right or wrong in terms of BCAM.  The context varies wildly and we cannot prescribe for another situation.  I very much disagree with hijacking a cause or issue for profit, but will never tire of trying to highlight the very different context here and the challenges for, particularly women, in the developing world.

Many winds and crosswinds are blowing during October.

So while these serious winds of change are sweeping through our lives, what better time to step back and refresh the visual image backing the blog.  This time I have selected an image from my travels again, but the elements which I wish to share are ones which are universal.  A sinking sun against a sky scattered with cloud formations, reflected on the water.  Foliage silhouetted against the darkening sky.  The mood of the sky captures the winds of the changing season and the promise of dry days and retreating rains.

This is the complete image, and very shortly (as connectivity allows) the image will appear as the background for the next few weeks.

Season’s Greetings

It can be very confusing listening to a Scottish person speaking.  We use many words and expressions in their own unique way and often these are not abundantly clear.  For example, we go to the shop or supermarket for our messages.  Does that sound strange?  Well, it is not strange to us at all.  It simply means shopping, particularly our grocery or food shopping.  Another word we use a lot is “piece” and you would often hear talk of a cheese piece, a piece and jam (jeely piece) or be asked “what’s in your pieces today?”  To us, a piece means sandwich,. So we also have piece-boxes which are used for packed lunches.  Not quite like the tiffin pot which holds hot food and meals, the piece box holds sandwiches and maybe an apple!

One deliciously expressive word we use a fair bit is “greet”.  It has nothing to do with the broader English language definition of “to salute or welcome in a friendly and respectful way with speech or writing, as upon meeting or in opening a letter”  Oh no – we use it rather it as a colloquial term for crying or weeping and it also has the sense of complaining or grumbling.  It is not a flattering term.  Greeting is not the word we would use for a dignified, composed weep.   And it is none too sympathetic or generous.  The image conjured up of someone greeting is of a contorted face, scarlet and probably snottery, and a significant noise volume attached to it.  To have a greeting face is not something to aspire to at all, with its associations of crabbitness and grump.  (Crabbit being another wonderful expression in Scottish slang for grumpy or miserable).  For example, this description from the Scots Language Centre quotes the use of “greeting face” which is most definitely not a compliment.

So that is the greeting.  But what is the season?  Well, for me it is the season of memories, milestones, landmark days and anniversaries.  We are also on the threshold of Breast Cancer Awareness Month which in itself creates a considerable stooshie around the globe. (A stooshie being another wonderful Scots word for a commotion, rumpus, or row, or a state of excitement or anxiety; a tizzy).  And there is one serious stooshie on the horizon across the blogosphere and breast cancer world.  Thoughts on that stooshie are for another day, today my thoughts relate to that season as it relates to my own experience.

Today marks the start of this season.  For it was 23 September 2009 when I discovered the lump and life as I knew it took a turn for the very different.  The landmark days come hurtling at me after that, with October 2 marking The Day I Found Out, my Cancerversary.  That was the day I heard those life-changing, burned-onto-my-memory words “this is highly suspicious of cancer”. On October 5 I had my surgery, lost my left breast along with its tumours, a heap of lymph nodes and their nasty cells and gained Twang Arm.  Although I spent most of the day unconscious, it is certainly a day I will never forget!  On 21 October my portacath was implanted in time for the first chemo on 23 October.  Exactly a month after the day I found the lump.

So it is a season for greeting, remembering, reflecting and to a certain extent, re-living those traumatic days of October 2009.  Add to that the annual Big Check with the attendant scans, examinations and appointments and you have a very sensitive season indeed.

So please excuse me if I get a bit prickly this season…

Profit and loss – Cancerversary reflections

Last Friday was a fairly ordinary day.  I woke before the alarm, looked out of the window and was pleased to see that the dusky daybreak sky had only a few clouds.  That meant that my dawn swim was possible, always guaranteed to give me the best start to the day.

So why, in the mid morning did I become aware of a sense of gloom?  I was aware of a blanket of sadness slowly wrapping itself around me.  I could feel unprompted tears, behind my eyes as they became watery at various points throughout the day.  The only reason I can think of is that I am a bit overwhelmed by the immediacy of my landmark days, especially what I can’t help thinking of as the Big Cancerversary, followed rapidly by the anniversary of my major surgery.  This is probably not helped by the fact that this comes at the beginning of October and the internet, particularly Facebook and the blogosphere have dizzying numbers of messages, promotions and snarky posts swirling around.

It is 2 years ago today from hearing Dr W tell me “this is highly suspicious of cancer”.  It is 2 years since the world as I knew it shifted irreversibly.  October 2 is the day I mark as my “cancerversary” because it is the day I started to live life through the Breast Cancer lens. I have noted the irony previously or being diagnosed at the start of October which is a sure-fire way of raising awareness in one’s immediate surrounds.  And self.

This deep sadness is mixed with a feeling of ingratitude and guilt.  Why am I not more appreciative?  I am still alive, 2 years after hearing the earth shattering words.  I am presently, until the Big Check next month, living with NED.  Apart from the usual concerns I do not have a specific reason to believe that the cancer beast is back.  So why am I not more upbeat and chirpy?  And to be honest, I really don’t know.

Last year I approached my first anniversary season without this sadness.  And of course it was such a big milestone, one I had truly believed I would not reach and which had seemed so distant in the thick of treatment.  I wrote a cathartic “letter to cancer” as part of the process.  I had a quiet and reflective day.  and blogged about it all of course.

I thought about writing another letter this year, but that didn’t feel quite right, or really what I wanted to do.  Part of me doesn’t want to give cancer the added attention, even though it has plenty of my attention. And to be honest I don’t really have anything new to say.  And cancer certainly has nothing new to say to me.

What does come to my mind though, is just how much I have lost and how much I have gained because of cancer.  I am afraid I have no gratitude to cancer for making me a “better person”, or more appreciative of the good things.  I think I have always appreciated the good things to be fair.  I have always been a carpe diem kind of girl.  If someone presented me with a remote control and said I could re-wind to my life before cancer, I can’t think of anything I would truly have done differently.  But now I find I have a deep sadness related to my diagnosis which is just kind of there.

This lack of appreciation, however, does not mean I am not thankful for some pretty wonderful gains.  The fact that family had literally dropped everything to cross the planet and be with me, bringing the most thoughtful things which I could not get in Thailand and which I didn’t even know I might need always brings a wobble to my lower lip.

I have also “met” a host of incredible people through purely because of cancer.  This has been through blogs, facebook and a small number of “real life” women too who have been diagnosed and treated in my neck of the woods.  These have developed into close friendships and invaluable support.  That would simply not have happened without the diagnosis and my life is enriched through knowing them.  I have been blown away the warmth, humour, attitude and smartness of my new ”thanks to cancer” friends.

I have also learned a whole heap of stuff, particularly about cancer and the real nature of the beast.  I had really lived in ignorance and understood very little about it.  I have also particularly learned about the reality of metastasis and that it can happen even when cancer has been detected at an early stage.

On another vein, I am probably at my fittest for longer than I care to remember (although I certainly do not look like it, ironically) thanks to daily exercise.  I make no secret that this discipline is related to my taking control of the few factors which are in our hands relating to recurrence.  Gym or recurrence?  Not a lot of choice really!  Not that I take it as any guarantee, but I do know that if the day comes when mets are found, I can put my hand on m heart and say that I have done what is in my hands to reduce risk.

I am more proactive in trying to have a more healthy work life balance.  I protect my leisure and creative time.

Another thing which I have gained in a sense, is a lessening of anxiety and fear of hospital procedures.  (Is a reduction of something a gain?  When it is a good thing then I guess it is.)  I will never be fearless when it comes to needles, scans and surgery but they are less daunting these days.

So I have truly gained a great deal.

That is what I must seek to balance against the losses.  I have also lost a fair amount.

In the immediate and tangible, I have lost one breast.  That is the most striking, daily ever present loss, and one which I feel physically, emotionally and practically.

I have lost movement in my left arm thanks to cording, evident in the existence of Twang Arm.  My range of motion is quite limited and although we have a level of fairly peaceful co-existence, it is painful and uncomfortable as well as less than fully functional.

Connected with this, I have lost the ability to do some very basic, taken-for-granted activities, like shopping.  I am no longer able to easily wear various styles of clothes.  Tops which go on over my head are too much trouble and discomfort.  Tight sleeves are out.  It is amazing how much that restricts what is available.  And I don’t even need to start about trying to get suitable, comfortable bras especially at a price which does not mean selling all worldly goods!

Perhaps more striking however, are the intangible losses.  Being very weak during chemo when travelling between Yangon and Bangkok for treatments stripped me of my independence and confidence to do things which had been a regular part of life.  It hit me hard that I could not easily travel independently, as well as many other activities.

Connected with this is losing the readiness to plan in the longer term.  I plan in increments of 3 months, relying on getting through the next round of checks before I plan anything significant.  I have a sense that it is “tempting fate” to plan beyond the checks and lack confidence to make firm plans far ahead.

I think that the greatest losses are in fact, connected with the gains.  Specifically with the gains of new friends.  Before diagnosis I knew of only a very small number of people who had been diagnosed with cancer.  I had never known someone who was actually going through cancer treatment, particularly chemotherapy.  Now I have a number of personal friends who have been diagnosed and many, many more online friends for cancer is a big presence in their lives in a variety of ways. Where friends have been brought into my life by a combination of cancer and the internet, some have been stolen by the same benefactor.  I was distraught to learn of the Bad Fairy’s death last year, the first time one of my new cancer given friends became a cancer stolen friend.  Every cancer theft is one too many and hits hard.  And as well as the grief of losing someone, there is the added dimension of being blatantly reminded of our own particular vulnerability and mortality.

This cancerversary might have a sombre mood this year, but I do take considerable note of the fact that after 2 years I am indeed still here.  I am feeling well and strong.  And if the next checks reveal nothing worrisome, my prognosis improves statistically.  While I might not be able to bring myself to say “Happy Cancerversary” I can take enormous appreciation that I can say “Cancerversary” and aim for many returns of the day.

It’s that time of year again…. Landmark Days and Extreme October approaching rapidly

I have a chill in my stomach as I see the date on the calender.  We are rapidly approaching a time of year when I am dragged kicking and screaming headlong into a face-off with my encounter with breast cancer.

Firstly, Breast Cancer Awareness Month, which has turned into a Pinktoberfest of every imaginable product marketed with pink ribbons and pink anything in many parts of the world.

Secondly, it is a period loaded with my own Landmark Days, that is, anniversaries of  significant cancer “milestones”.   The first one is rapidly speeding towards me and is now less than 2 weeks away.  That is September 23, the day I discovered “the lump” and the day that it all started.  Being diagnosed at the beginning of October is a cruel move and means that awareness stares me in the face even more than usual.  And just to add an extra bonus frisson, I will have my Big Annual Check in the middle of October.  The stomach churning game of “Hunt the danger signal” Just in case there was any in danger of breast cancer slipping my mind.

Last October my head was very firmly in the “I-can’t-believe-that it-is-already-a-year-since-this-nightmare-started-while-I-can’t-believe-it’s-only-a-year” space. It had been impossible to imagine the one year point back at diagnosis time.  The one year milestone was a time of intense and mixed emotions.  Now, 12 months, 4 NEDs, innumerable needle sticks, 360 odd Tamoxifen, at least a dozen passionate encounters with Capt Paranoia and 3 memorable adventures I find myself in a somewhat different place.

Throughout this year, as I have parted company with the phase of treatments and appointments you live your life around, I have been able to see things from a slightly more objective perspective.  I have also learned an incredible heap of things, some of which have shocked me and spurred me into shouting out.  And as I am in a different space, I have a strong feeling that the Pinktober month is also taking on a different shade.  It’s more like an “Extreme October”. There is a significant disconnect between the marketing Pink-everything in sight October extreme and the debate (or lack of it) around the need to progress in understanding breast cancer, especially metastatic and widely held beliefs such as the one that early detection guarantees cure.  I find there is another extreme between the excess of marketing in many countries and the total lack in others.  Last year I did not spot one single item of pink merchandise here, and in Thailand I saw evidence of the Awareness month in the hospital but not in the shops.

Last October my posts were mostly reflective and highly subjective.  I marked my Cancerversay by writing a letter to Cancer which probed the thorny personal relationship I had developed with cancer.  My Big Check came at the end of the month and I moved out of the month embracing a new phase.  I think this October will be different.  For one thing, I have learned a great deal from blogging peers about the limitations, shall we call them, of the pink campaigns.  I am far more tuned in to the debate and am learning uncomfortable truths.  The blogs I am reading and the friendships I am making are bringing me into a movement of questioning and challenging which I suspect will become even more vocal as the month wears on.  I have been intrigued to hear that there have been some “overtures” made to some of my snarky, smart blogging buddies to write guest posts on commercial sites.  I sense a counter pink movement this Extreme October.

In terms of Feisty Blue Gecko, I am forming a plan for how I will approach Extreme October posts, bearing in mind how much I love my spot on the fence.  I have a particular plan forming for 13 October which has been designated Metastatic Breast Cancer Day.  (Yep, one day – what a contradiction in itself).

I am intrigued to see how this Extreme October takes shape.

Loch Ness Monster Marathon

It is not strictly speaking the Monster Marathon but it is a monster feat!

I might have gone through what I termed the Triathlon of Cancer treatments but that was not really through choice.  However, my niece S and her hubby N have chosen to run in the Loch Ness Marathon on Sunday and what is more, they have chosen Breast Cancer Care as the cause they want to support, raising both funds and awareness.  Considering S and N have two young children and have been training during wind and rain (we’re talking Loch Ness and wild Scottish weather remember) this is a really monster achievement.

I am one of 3 women close to S who have been diagnosed with Breast Cancer this year so it is an emotionally charged time.  Breast Cancer Awareness Month begins on Friday, my own Cancerversary is on Saturday and the Marathon on Sunday.  In addition to the physical demands of the marathon, S told me that she feels so emotional about the event that her tummy feels like a washing machine!  She promises pictures of the event and in turn I promise to share them here and on Facebook once they arrive from the other side of the world.

Breast Cancer has been a monster, invading our lives and it seems fitting that S and N will be running on the doorstep of an apparently much friendlier monster.

I’ll be thinking of you as you pound the lochside paths, chasing the cancer monster.  I cannot begin to thank you enough.