Another Sunrise

This morning saw a light frost, miniature ice shardlets glistening in the first rays of sunlight. I closed the door behind me, leaving a flower shadow painted on the wall by the morning light.

Under a keen, blue sky, I passed cropped fields of sandy coloured stubble with their scatterings of hay bales, punctuated by deepening reds and rusts of the changing leaves. A Scottish autumn at its very best.

It was not like this ten years ago today. I was half a world away, if not a whole world. It was the end of a long and especially heavy monsoon and the Yangon I left behind was lush as the late afternoon flight lifted into the sky. An hour later, the sun was glowing red as it rested on the Bangkok horizon, pausing before it slipped out of view. Silently marking the end of another day, and another era.

It was late that evening when I heard the words that were to take life in an unexpected and unwanted direction. “This is highly suspicious of cancer” Dr W gently told me.

Ten years ago, this very day. Those words have echoed in my ears ever since.

There have been numerous sunsets and sunrises since that day, each one different and each one heralding an unknown day or night ahead. Some cloudier days when the sun has been hidden, and some bright skies like this morning when the sunlight throws promise and optimism on the coming day. This chimes somewhat with the path that life has taken since, and of course, before then. Some sunnier, promising sunrises and gentle, rosy sunsets. Other days, a stormy sky, hiding the sun or gloomy, troubled clouds shaping the mood of the day ahead and the challenges and surprises that arrive in our path.

On this significant Landmark Day, I am thankful to be here, and thankful to see the sun rise and set on an ordinary, extraordinary day.

Advertisement

Blissfully unaware

The other morning, I was smiling at a Facebook memory of my early days in Myanmar as a post from years ago flashed on the screen in front of me. I had apparently been preparing to travel to the field, smugly noting that Grandmother’s suitcase was lying in the corner recovering from a field trip less than ten days earlier.

“poised to pack again – grandmother’s suitcase is, as, yet, blissfully unaware” I had announced to the world.

Wondering idly when that had been, I checked the date. My heart stopped, I had written this on 4 September 2009. The irony hit me hard. Only 19 days later, life had changed dramatically.

Checking back on my diary, I could see that I had left Yangon early on the Monday morning, 7 September. Grandmother’s suitcase and I had left home before dawn, with two of my colleagues to head to the airport for our flight to Mandalay. The flight had been smooth, and I had noted that I was becoming familiar with Mandalay airport, with its cavernous arrivals area, row of empty immigration desks and the one carousel creaking as it revolved with our few bags on it. I had been there only a couple of weeks earlier but it seemed that the landscape was even dustier than it had been then, the bougainvilleas holding on to their colours with effort under undignified layers of dust.

This had been the start of an exhausting but inspiring to Upper Sagaing in the remoter north of Myanmar and where few foreigners were allowed to travel.

From Mandalay we had travelled by train, arriving not long before midnight and spent the following days visiting project areas and working with our field based colleagues. I learned such a great deal, these early days of my job in Myanmar were such a time of constant learning and growing to understand the context and our work.

 

We headed back down to Mandalay several days later, on an overnight train in a crowded compartment. From Mandalay we travelled onwards to another township. This time in the dry zone where we spent more days with colleagues and communities in our project areas.

We covered a great deal of ground, both in distance and our work. I had travelled by plane, train, car, bus, boat and even bullock cart to remote villages and townships gathering mosquito bites, dust and dirty laundry. Grandmother’s suitcase was clearly disgruntled at the indignity of this treatment – we were both travel weary but I was also inspired and motivated at the end of such a draining field visit. Another very early departure for the return trip to Yangon saw us driving through Nyaung U’s roads, deserted but for a long line of monks collecting alms as the sun start to throw its first light of the plains of Bagan.

 

I would be home in Yangon in time for lunch, with many a tale to tell, not enough photographs and a week’s worth of sleep to catch up just a couple of days before my visa would expire. The long awaited renewal had still not come through and I would not be not permitted to travel until it did.

All through that field trip I had been blissfully unaware of that I had been carrying an additional item of baggage with me. An unwelcome addition which had been growing and developing. It was just a few days later, in the shower, that I discovered the lump and life took a completely unexpected turn. I had been blissfully unaware that I had been harbouring three masses, two of them cancerous in my left breast.

It was 23 September 2009 when that blissful lack of awareness was so abruptly ended.

Ten years ago today, I entered a new universe. Ten years have passed, and I am still here. The collateral damage, be it physical, emotional or psychological has been considerable but there is an important message. I am reminded more than ever to carpe that diem. We all go about our days, unaware of what might lie ahead. There are challenges ahead, personal and global yet equally there are moments and people to cherish and treasure. We just need to pause and make sure we don’t miss what matters.

No Seven Year Itch

This is my 7th cancerversary. And I am beyond happy to be here to type those words.

If there’s something I have learned these past years about cancerversaries, it is this. They are pretty much all the same but they are all different too. Each year, similar emotions are stirred. The memory of those words “highly suspicious of cancer” never fades, nor does the memory of feeling petrified. Petrified in its most pure sense, being frozen by fear, immobile, terrified and numb. The feeling of loss, that comes when faced with mortality. The knowledge that things can never return to they way they were before diagnosis. Yet, in seeming contradiction, I have found each cancerversary different. Some I have marked in quiet reflection and thankfulness. Some more analytical than others, and some more intense than others. None, not one has been celebratory. October is brimming with memories and landmark days as well as being compounded with the irony of Breast Cancer Awareness Month so I am surrounded by reminders both in my own head as well as all around me.

October also marks the time of the Big Check. Usually I roll up at Counter No 2 of my familiar Bangkok hospital, am greeted like a long lost friend and find myself on a conveyor belt of blood draws, scans, x-ray, mammo and vitals before seeing my dream team who unravel the mysteries held in the various tests. That’s usually when the tears start, while sitting waiting to wrap up the final paperwork and leave the hospital. An overwhelmingly emotional mix of relief, grief, release of tension as I find myself connected, sometimes a little less directly than others, with NED, No Evidence of Disease.

This year is very different. There is no seven year itch which leads to a rupture in the long relationship with my wonderful team in Bangkok. The reality is that I am no longer an hour’s flight from this team which has looked after me so well for so many years. I am now on Africa soil and would need to find a new dream team in the region. I had considered returning for one final Big Check in October but the unexpected health hiccup in August meant that was unrealistic and a long haul trip unwise. However, the extra time in the UK meant that was able to hurriedly arrange a check up. This was far less detailed than the Bangkok checks, protocols being very different and incorporated mammogram and bloodwork. And no tumour markers. We know these are controversial, and not considered reliable. I know that, yet the yearly or twice yearly marker check is one I cling to as I find reassurance in stable results. It has been strange starting my story at the beginning with new specialists and support teams. It was unsettling not to have a physical examination. I almost feel that I need to go through the intensity of so many tests to be able to breathe when I come out the other side, always knowing that breathing is a luxury and not guaranteed. This year, my bloodwork was fine. Kidney and liver functions and the other key bloodwork all normal. Slightly anaemic, unsurprisingly given the bleed just beforehand. And the mammo was also unremarkable. All reassuring and welcome news delivered over the phone just a few hours before I boarded my flight to return to Africa. I had half guessed this though. The mammo had been carried out a few days earlier, and the oncologist had my phone number and knew I was leaving the country. I knew that if there was something worrisome, then I would have received a call much earlier. Though my heart did stop when her PA called me with the opening words “unfortunately…” This was not related to the tests, thank goodness, but to difficulty in getting me a replenishment of Femara before I departed! So there was no moment when I was shooed out of Dr W’s door to be banished until the next round of checks. No release of  tension, nor tears. Perhaps the seven year point coincides with this new landscape and brings a new perspective even to the Big Checks.

So with the Big Check behind me, friendship maintained with NED, how do I mark this seven year cancerversary? I always have something to say, being a “remember-the-date” kind of girl and October 2 with its cancerversary status is one firmly etched in my mind. This morning Facebook welcome me with a swathe of reminders about the previous posts I have written on this day over the past years. Last year my Big Checks fell on the same day and date as the diagnosis six years previously and I focused on the similarities and differences of those appointments.  The previous year marked five years after diagnosis, a time scale which is widely held to be a magical milestone but which is far more complex. At four years, I was in a contemplative mood with few words but a great deal of thinking and remembering, noting that this was “a day of recognition, quiet reflection and gratitude for a a present which is precious and fragile“. On the third cancerversary I wrote about the line in the sand which you cross when you hear the cancer words. That line which marks the time before and the time after. At the two year point, I dwelt on what I had lost and what I had gained, much of it intangible and psychological. All of it real and intense.

But the very first cancerversary is one which retains its own particular character. That one year mark was an important one, especially given that I did not think I would see Christmas beyond diagnosis, let alone a whole year. Life had changed beyond recognition and I wanted to tell cancer a few things. So I wrote a letter to cancer. I re-read it this morning and realise that in fact, much of this sentiment holds true years later, so I have decided to share the letter again.

October 2 2010

Dear Cancer

It is a year since you came into my life and it’s about time I told you what I really think.

You were uninvited.  And unwanted.  And unexpected.  You have changed my life beyond belief and it really will never be the same again.

I had no choice about your unwelcome arrival, you didn’t give me any chance to opt in our out.  You were just there.

The first time I realised you might be there I remember a terrible fear. It was late September and I remember thinking that I would not see that Christmas.  The thought of you kept me awake at night, my mind veering between hope that there was another medical reason for your symptoms, and sheer terror that indeed you were the cause.  I admit I had never really thought that you would try and invade my life, after all you have not troubled our family before and I naively thought that you preferred certain genetic and family traits.  So when I was told that you were there I was shocked and surprised.  And terrified.

You are such a destructive force and that meant I had to endure destructive treatments.   For my survival I was trapped in an overwhelming battle between massively destructive powers. I had to lose parts of myself to cut you out of my body. My body hosted a long and violent battle between you and the toxic chemotherapy and the rays of radiotherapy as they sought out any trace you might have hidden as a seed for the future.  I know that I was left sick, exhausted and very weak but that was worth every ounce of suffering to know I tried everything in the hands of the powerful team I have to banish you.

While this has taken me through a horrible journey, when I have had numerous side effects, lost my hair, caught pneumonia, lost much of the use of my left arm and generally felt very ill, it has brought me some special things too.  The relationships with those near and dear have grown and strengthened and we have cherished time which we might otherwise have squandered.  While it was my body which you invaded, you touched the lives of many beside me with your heavy dark hand.  I have had to face up to some horrible and unpleasant procedures and been able to find a strength and resilience that I had no idea I possessed.  I have connected with many other women all around the world whose lives you have also invaded and we have shared the most private of details from the terrifying through to the hilarious.  We have laughed at your expense, even though we acknowledge that you have had possibly the bigger laugh.  Time will tell if you have the last one.  While I value and treasure these factors which I found through you, don’t get any ideas that this might endear me to you.  No, I CAN’T EVEN BEGIN TO LIKE YOU!  I get your point and I will continue to do everything possible to keep you as far from me as possible.

I am still frightened of you because you are such a destructive and determined force. You are also horribly sneaky and I know how powerful you are.  I know that I have always to be vigilant because I don’t know when or where or how you might try another attack on me.

I resent you because I am no longer able to think of the future without worrying about you coming back.  I resent you because I now live my life through what I call the “cancer lens”.  Even if I don’t need to take you into account in what I do, you have changed the way I see everything. You could say that instead of seeing life through rose tinted spectacles, I see through pink breast cancer spectacles.  I might not particularly like it, but I recognise, accept and live with it.

So I will be keeping a very keen eye open for any attempts you make to sneak back into my life.  And trust me, if you do try any comeback, you will be treated to exactly the same welcome.

Yours candidly

One Feisty Blue Gecko

This makes me think of the French expression “plus ça change, plus c’est la même chose” which translates along the lines of “the more things change, the more they stay the same”. Indeed they do. The landscape is new yet somewhat familiar in certain elements. The perspex plates which cause both physical and emotional discomfort in mammogram machines, the needles and skilled fingers which try to find blood in reticent veins and the anxious waiting all easily cross continents. Yet, the team now looking after me, and the systems and procedures are very new as is the African soil, the flowers and the birdsong.

Indeed in these times, there is always something to take us back to that which truly counts. The dry season which was underway when I arrived in Africa has given way to a short rainy season. It is less humid, and far less warm than Yangon but the thunderstorms which light up the skies are reassuringly constant in their dramatic nature. The lightning reveals the silhouettes of a thousand hills and causes electricity lines to blow. In the fresh post rain air this morning, I spotted on the rain-sodden grass an unexpected splash of colour. There in the middle of the grass was a brand new flower. As if placed there for this day of note.

A perfect, timely reminder to cherish the past and embrace the new.

Friday 2 October

Friday 2 October 2015

I’m in Bangkok, having just gone through the Big Checks. I’m exhausted. Utterly drained, numb and emotional. I struggle not to cry.

Friday 2 October 2009

I was in Bangkok, having arrived from Yangon in the afternoon and going immediately to the hospital from the airport. I was exhausted. I had not slept properly since I had found that lump and been referred to Samitivej Hospital. I was terrified.

Friday 2 October 2015

Bloods first. four large vials, all with my name on the outside, colour coded for each type of test. A bit of a struggle and fiddle to persuade the vein to cooperate, but it yielded fairly quickly. These phlebotomists are highly skilled.  I hate needles and blood takes, but nowadays I hardly flinch. If I could count the number of needles which have pierced my skin to draw blood…. Next, through to Imaging and changing into a fetching blue gown.

I was handed a locker key, and found that I could not reach the locker. Rather than ask for another locker, I threw my clothes upwards, using the non Twang Arm. First was the X-Ray. Always quick and not uncomfortable. Next was mammo. “Right breast first” said the technician. “Right breast only” was my reply. Less comfortable, squeezed so tightly I felt that my breast might not be able to hold its contents under the pressure, but happily it did. A couple of different images in different angles, and in no time I was back in the waiting area.

Friday 2 October 2009

The flight was a little late and the traffic from the airport very busy, so I arrived late at Samitivej. I was met by our Liaison Manager and ushered immediately through to the Imaging Centre. At some point I must have filled in some paperwork, but I don’t recall that right now.

I had never had a mammogram. I had no idea what to expect. I knew it would be uncomfortable, even painful. I was in that room for heaven knows how long. I moved, for new images at different angles. I heard “calcifications” and thought that was a good sign. I have no idea when I was finally released from the mammogram room but eventually I was.

Friday 2 October 2015

Next was the Ultrasound. I hate this one. I freaks me out, quite simply. I hear the beeps as shapes are pegged and even though there is no visible screen, I am straining for hints. “You remember me?” states the Doctor. Yes I do. I think. I think she was the Ultrasound Doctor last year. The one who asked me if I was seeing my Doctor that day. I remember that freaking me out. “Yes,” I smiled. I remember.

Again she asked me if I was seeing my Doctor. I reassured that I would see no less than Three Doctors. Is this normal or something to worry about, I wondered. Silence and beeps. Gel everywhere. Too much attention under my right ribcage. There’s something wrong.

Suddenly and abruptly she stands up. “Finished” she announces. A good sign or a bad sign, I wonder?

“I will send my report to your Doctor”. she says as she is leaving the examination room and I am being cleaned of gloop. More worry. What is there to report???

Friday 2 October 2009

You know when there periods in your life that you play and replay, on a loop? The Ultrasound is one of those times. I will never forget that Ultrasound, the drawings, the straining for clues, the clinging on to hope and the devastation and denial combined when I saw the Doctor key in ” M _ A _ S _ S ……  N _ O 1…..

Here is how I captured it at the time …

Next was ultrasound.  Again the investigation was very thorough.  This time though I could see the screen and all sorts of weird ghostly shapes as the doctor methodically worked her way through the process. Again, I tried to pick up clues and hints and soon got a big one  “left side – problem”, I was told.  Hmmm.  The chittering started again, perhaps helped by the Air Conditioning and the cold ultrasound gel. “You need biopsy”.  Oh dear – more chitter chitter!  The technician was lovely – calm, professional but clear.  I said I was worried and she told me not to worry (lurch of hope) – my Doctor is a great specialist and I am in the best of hands.  She then started pegging the dimensions of what she was seeing in the scan.  I had to watch, but kept looking away as she pegged a strange shape and clicked to save it.  Then my stomach turned as she keyed in – m-a-s-s-.  That is a clue, and not a good one.  She didn’t stop there – mass.. n-o- 1.  I closed my eyes and swallowed. There is more than one lump.

I think it was around then that the specialist himself appeared, his Bluetooth flashing in his ear, and he joined the party.  Or maybe it was a training workshop because he had a magic marker in his hand and methodically they started to draw on my chest.  I started chittering again – actually I am not convinced I had stopped.  They reassured me that they were not going to hurt me – just draw on me!  These were the markings for the biopsy.  Another worry lurch when I was asked if I had eaten – surely they are not going to operate tonight?

Eventually the drawing was complete, the ultrasound images all recorded and I knew that the time was coming for biopsy and diagnosis.

Friday 2 October 2015

Waiting, waiting, waiting……

The bloods are taken and have released their secrets to the Doctors. I have no idea what messages they tell.  I have to wait. And wait. My Blood Pressure, weight and temperature are taken. I have lost another few micrograms, half a kilo. That is good, all things considered.

My Blood Pressure though is sky high. I am stressed. By too much. There is no hiding this fact, my BP does not respect secrets or confidentiality.

Twang Arm is complaining. And hurting. And the wait is tortuous…..

Friday 2 October 2009

Dr W had joined the discussion in the Ultrasound room. I remember his bluetooth. I remember him arriving at the door and say “Khun Philippa?” I remember a lot of conversation in Thai and a great deal of marker pen.

I remember being afraid, but thinking that this cannot be cancer. There is no cancer in my family…. 80% of lumps are benign….

Friday 2 October 2015

Finally, the appointments are looming. Dr A first, my endocrinologist. I still don’t really what one of those is. But I do know that Dr A looks after me. He understands and offered suggestions when I dissolved in tears at the last consultation. Today, he goes through my results.

My blood sugar is ok, slightly down from last time. Down is good. Really good. I am breaking the trend, and I want to keep doing that. Cholesterol is good. Kidney and liver functions are also good. He moves briefly over my tumour marker results. They are consistent and show no increases. That is good. Very good.He is happy with my minimal weight reduction, and understands my frustration at not being able to swim. Before we know it, I am saying goodbye for the next few months.

I sit down in the waiting room again. Next is Dr W2 my oncologist. Within a few minutes though, I am waved through to go and see Dr W. Dr W2 is running late? I don’t know, but I head through to the other waiting area. Dr W no longer consults in Room No 59 but that is ok. His current room has been auspicious so far.

Dr W welcomes me. How are you? How is Yangon …. Many questions, and then “How many years now…”

“Six years” I tell him. “Six years. Can you believe it?”

I am not sure if he can or not.

I tell him that Twang Arm is causing me grief. Not too much swelling, he observes, but a bit.  Lymphoedema. After so so long. So unfair…. I tell him of my challenges in finding a new swimming space. He encourages me to find such a space. I will…. I promise to myself.

He reviews the results. He ordered the mammo and the ultrasound. He is happy with the results. Nothing sinister.

He then asks when should be the next appointment. I don’t want to say, I want to be told.

“A year?” he asks? My heart lifts and I look up expectantly. “”Too long?” he enquires. Perhaps he is taking my reticence for the need for more frequent review.  I SO SO badly want a review in one year. What a statement of recovery that would be. “It’s six years now” he adds. When will you come back? I reply that I do not yet know, that Dr W2 will make a suggestion or decision. “One year is fine”, he tells me. “but if you come back before then, please come and see me too”.

So I know. One year is fine, but if (and I know that it is highly likely that Dr W2 will request a return presence in either 3 or 6 months) it could be sooner. We settle for an appointment when I next return.  I am enormously heartened by the fact that he is happy to see me n one year. ONE YEAR. That is MILES away.

I return to the waiting area. Dr W2’s PA realises that I am there.  She ushers me in to his consulting room. I am fairly relaxed because by now I have learned the results of the Ultrasound, mammogram. I know that there are no surprises, My mammo result is good  (Birads 2 no less. Why, Birads 2 is classified as benign.) and bloods are fine. I know that my tumour markers are stable, my critical results are fine).

I complain mildly about Twang Arm. Twang Arm has already been well examined. Hmmm, is the  consensus. Lymphedema. Not welcome, but not sinister.

“How long is it now, since you were diagnosed” asks Dr W2. “Four years?”

Aha, no – no. “Six years tomorrow, I reply.

SIX YEARS. Six year whole years.

I have never, ever, asked how long I would have survived without treatment when I was diagnosed back in 2009. But something inside of me would like to know. One day perhaps…

Dr W2 has recalled me every three months for a while now, following the Pulmonary Embolism and some other glitches, so I await his directive anxiously at the end of the consultation. I silently plea that he will not call me back again in 3 months. So when he suggests that I come back in 6 months time, I am more than happy. Six months is a long way hence, and I am quietly delighted to have a longer breathing space,

Friday 2 October 2009

Dr W has explained the scans and Ultrasound to me. The calcifications are not innocent. They are worrying. He shows me the space ship. The shape on the screen with its irregular growing patterns.

“This is highly suspicious of cancer” he tells me gently yet irrecoverably.

Once you speak these words they can never be taken back. “THIS IS HIGHLY SUSPICIOUS OF CANCER… HIGHLY SUSPICIOUS……

This is cancer.

Yes, you are going to die.

That is all I can hear.

These are the words, once spoken, which can never be retracted.

“This is highly suspicious of cancer…. highly suspicious of cancer… highly suspicious…….highly suspicious………

Friday 2 October 2015

I realise it is my “Happy Cancerversary”

I realise that today marks six whole years since I heard those words. “highly suspicious… highly suspicious.”…

Six years ago, I slithered up to Shwe Dagon in the early morning, before my flight to Bangkok, to give blessings and, and to plea, nay beg that this wold not be cancer.

But it was cancer,. Despite all the odds.

And still, I am here., Six years ago, when 2 October was also a Friday and I learned that I was mortal and that I was not somehow protected from cancer.

October 2. Every year.

Yes, I often wonder how long my prognosis would have been back in October 2009.

I have never been able to ask that question. But I do know that I would not be here still, without treatment……..

Today, I AM still here. the path has been hard and gruelling but I am still here.

So, many returns then, eh?

October 2 – Happy Cancerversary!

After Five Years

I cannot quite imagine how this roller coaster cancer ride might have been if I had been diagnosed years earlier. Not necessarily in a world before the internet, but perhaps in a time when it was not such an integral part of life and particularly before social media became more common than chatting to your neighbour. Back in the day when having a PC in your home was the ultimate in connectivity, and when we used to store our data on those unreliable floppy discs. How life has changed.

I know that life in this post diagnosis world would have been much more difficult for me without a major online dimension, even although it is hard to imagine just how that might have looked. From the time of first fear and concern, when I entered into an unhealthy co-dependent relationship with Dr Google, through a process which saw me using information forums and connecting with others going through treatment and similar paths. From the moment I closed my eyes, held my breath and clicked “publish” on the very first post of this blog. Through a process which saw me connecting more and more with the developing online community, discussing the most personal of medical details with “strangers” on the basis of trust and solidarity, crying when new found friends were taken, venting at injustice, inequity and instances of stupidity. For me, the internet and social media have played a major part in my cancer experience. An important element of that is of course that I am in a country so far from my origins. Where the medical experience is not so different, but the wrapping is unfamiliar. Language, cultural beliefs, non-medical support and even the availability of non-Asian wigs add layers of complexity when navigating a new and frightening terrain. Of course, this is individual and the choice which has worked for me. I have close friends who have gone through this similar path and had very different levels of engagement with the online world. It is not a case of what is right or best, but which approach works for each individual.

And for me, the online world was what made the difference.

Through this online community, I have connected with (mostly) women blogging through breast cancer and as with any friendships, some resonated particularly. I remember early in 2011, being directed somehow, to a blog called After Five Years. Very quickly I became an avid follower of Lauren’s writing. As the title clearly says, this was a blog about life five years after diagnosis. When I first started reading Lauren’s work I did not realise that this would become a full year of weekly posts, exploring a plethora of aspects of breast cancer, and its fallout five years later. I loved Lauren’s exquisite writing and thought-provoking insights. I could hear a southern drawl when I read her words and she brought a wisdom and understanding of great depth, in a way that was easy to absorb. I used to wait for the “ping” on my Twitter feed on a Sunday evening on my side of the world, to tell me that Lauren’s weekly post had just been published, and I would rush on over to read it.

So much of Lauren’s work resonated – fear of recurrence, anxiety and stress through follow up scans and checks, venting over lack of understanding and sensitivity of others, the burden of a cancer diagnosis on those around us. I realised the other day that I had adopted one of Lauren’s approaches when I shared my fear that I had “toe cancer” following some sudden twinge.  This was borrowed from Lauren’s experience of “thigh cancer”. I can share a fear in a way which makes people laugh instead of adopting an embarrassed or dismissive expression if I describe my worry about “toe cancer”.

However, while a great deal did resonate, there was one Very Big Difference between Lauren and me. The clue is in the title of her blog.  While I had newly emerged from that year of treatment and was in an early recovery stage, with fuzzy clumps of cotton wool hair shouting CANCER loud and clear, Lauren was a whole five years from her diagnosis. Five years seemed so far away, in some kind of far off and safe place. I was an infant in the first weeks of Kindergarten and she was a prefect at the Big School. I could not imagine, and was frightened to think of a time so far ahead as after five years.

Yet here I am. This evening I will step over what is seen as an important line in cancer terms, into the after five years. Late in the evening of October 2 2009, Dr W gently spoke those words which were to have a greater impact than any others any in my life that I can think of. “This is highly suspicious of cancer”. Today is the day which has become my “Cancerversary” even though the official diagnosis came three days later. This was the moment I stepped through a set of swing doors into a territory I did not want to be. A set of doors which close behind you and will not let you back into the place you have left.

Early in my treatment, I remember apprehensively asking Dr W about life beyond the immediate treatment. He explained to me that once the rounds of chemo and radiation were done, and if there had been no regression, then I would be recalled every three months for follow up checks. At the checks which were timed around the anniversary time of diagnosis, there would be a more in depth monitoring which he calls the Big Check. If all is well around the two year point, I would graduate to six monthly checks. And at the five year point, again unless there is any reason for more frequent review, you are released into a world of annual checks. I remember listening avidly as he explained a life beyond the one where treatment and appointments drove every other aspect of life, and felt a quiver of hope that there was a future, a tomorrow and that one day life could be different. It felt incredibly far away, but knowing that such a time could exist provided a wonderful boost. My own path has differed a little to this, due mainly to the embolism and its accompanying bonuses.  I reverted back to 3 monthly recalls for a bit and I do not expect to be waved into the distance for a year if all is well next week. Particularly while there continue to be little extras and while the endocrinologist continues to call me back for three monthly reviews.

I have approached this five year benchmark with mixed feelings. I cannot truly breathe out and say “after five years” out loud for at least another week. Because there is an unwritten, unspoken expectation in there. After five years with no recurrence, is wrapped up in those words. And I know I cannot even think that while the appointment slip for my Big Check is sitting in an envelope with frightening words on it such as “mammogram, ultrasound of upper abdomen, chest X-ray, blood work for CEA, CA 153, (tumour markers) PT/INR (for the embolism) and a range of other tests. The appointment slip holds me in a limbo for at least seven more days, with its bold 9 October against the various tests.  I have to get through each of these, without any “flags” for follow on tests, such as bone scans or the dreaded CT scan. I have to wait, holding my breath as Drs W and W2, my surgeon and my oncologist review the scan results and I wait for the announcement that all is or is not well, that there are or are not worrisome signs which need to be investigated further. Only if, and when nothing sinister is revealed can I close my eyes, and say after five years out loud.

There is another dimension to the after five years which I really need to articulate. That relates to the widely held belief that five years represents a magic line, when you step from a world of shadow and darkness into a bright, shiny world twinkling with some kind of protective fairy dust, shaking off any fears or anxieties. That after five years means CURED. Out of the woods. Cancer free and no more need to worry. Survival to five years suggests that you can relax, as it won’t come back after that timespan. With many cancers that is the case, recurrence after five years is so unlikely that you can be considered as near as you can be to “cured”. But breast cancer is one of those sneaky, deceitful cancers that can lie dormant for years and even decades before it decides to reactivate. Around one in three of those diagnosed with an earlier stage cancer will go on to develop metastatic breast cancer. Some cancers are just wired that way while others can be eradicated by the gruelling treatment. The thing is, we don’t know which ones are programmed to destruct and which ones can be truly banished. We live with the knowledge inside us that our cancer might come back, even though we can be living with NED for years.

For me, after five years is an important milestone, not because I can skip off into cancerfree land, but because it represents a serious chunk of time. Half a decade. And half a decade, when you have heard the cancer words and stared mortality right in the face, is a wonderfully long time. Half a decade brings a perspective to living beyond diagnosis, which is impossible in the earlier days.

So if you ask me how I am going to celebrate my after five years, please understand that I am not being negative or defeatist when I say quite clearly that I don’t want to celebrate. This is not a celebration. It is, however, a time for thankfulness even before the Big Checks of next week. There is such a difference between celebration and thankfulness.

I am thankful that even though my cancer was advancing, that it had not travelled beyond the lymph nodes. I am thankful that I have access to care and treatment of the highest standard and a wonderful medical team. I am thankful that I am surrounded by support and love of family, friends and colleagues and an online community. I am thankful that despite a rocky medical road, particularly surviving a pulmonary embolism and living on a cocktail of ongoing meds, I am in reasonable health and strong enough to embark on gentle adventures and visit new places. I am thankful that my own changed perspectives and priorities have galvanised me into a changed lifestyle to achieve life goals NOW and not let these slip from view. I am inordinately thankful that I am able to continue life and work in such an inspiring and fascinating environment.

It is also a time of unexpected and intense emotion.  I was blindsided by tears before breakfast this morning.  I shed surprisingly few tears at the time of diagnosis and through treatment.  Why I crumbled this morning, I don’t quite understand but I have a game face to find before I set about an ordinary day.

Of course I have no idea what is ahead, no sense of whether the Big Checks will bring a new, unwanted meaning to after five years if there is anything untoward in the tests. Of course I am acutely anxious and afraid of the checks. But I do know one thing. Today I have reached my after five years and I am still here to keep telling my story.

This is October too.

Today is October 2nd.

On October 2nd four years ago, I was holding my breath, pleading and bargaining with myself, willing the lump and asymmetry in my breast not to be cancer.

Late in the evening of October 2nd four years ago, I heard those words, those unforgettable words which can never be unspoken.

This is highly suspicious of cancer.

Today is October 2nd.  Today is my fourth cancerversary.  I have come a long way since hearing those words, yet too often I have no idea where I am.  I stand in a strange space, the ground underneath my feet seems unsure.  Words and emotions swirl around my head.

The cancerversary is a strange beast.  Not a day for celebration. Rather a day of recognition, quiet reflection and gratitude for a a present which is precious and fragile.

Inundated

Rainy season, rainy season  good old rainy season!  Slowly, gradually the skies clear,the mercury rises and we enjoy slivers of sunshine.  This is the time of year when we might even see rainbows.

This is also the time of year when we are more likely to be caught out by surprise rainstorms as we think the sky is clear.  Tuesday morning saw an unusually hard downpour before I was due to leave home in the morning.  I left a little early to allow extra time. As soon as I walked through the gate I was confronted with a highly confusing picture.  Right in front of me, where the road should have been, I could see children splashing as if they were in a swimming pool or river.  Where our street gently slopes downwards, our little lane had indeed become a river!  Further down I could see men waist deep in water.  Apart from an inch or two of water, I have never seen our street flood, unlike many other parts of the city. Now it was completely inundated.

Incredibly, most folks were going about their daily business and wading through the murky water. Children being carried or clinging on to the back of a bicycle as they get a lift, quite literally, to school, and the monks continuing to gather alms.  All seemingly oblivious, at the most, slightly inconvenienced.  While I stood like a complete wimp at the water’s edge phoning my office and taking photos before I returned home to wait.

Collecting alms

I was surprised that the waters receded fairly quickly, leaving major traffic jams and water-logged little cars stranded haphazardly around town. Soon there was little sign that the community had been inundated.

And amidst this, I feel emotionally inundated though perhaps it is not visible.  Work intensities take up enormous reserves of energy and time; I continue to strive to take time to smell the orchids, and have weekends and evenings filled with reading, writing and photography pursuits; working with a small group of women to organise awareness activities appropriately; swimming and cycling between downpours…….. In addition to that though, my mind is trying to assort and address some extras.  It is nearly 6 months since my father’s death and that is in my mind constantly, unexpected prompts catching me by surprise, yet feeling that it is too long ago for many to realise that the pain is so raw.  Healthwise, I am hurtling along “anniversary season”, having just marked the four year point from finding the lump, and being only 48 hours away from my four year cancerversary – the day that everything shifted and changed.  The day I heard those words “this is highly suspicious of cancer”. And just to add to the overflowing maelstrom in my head, I will travel to Bangkok for my Big Checks in just over a week.

There is not a great deal I can do, other than keep on swimming as the waters swirl around me, aware that Capt Paranoia is swimming towards me. I crave calmer waters and sunny skies.

For the moment though I must hold on to the thought that this inundation will also pass, in its own way.

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.