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.

africa

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Disorientation

And so the sun sets on another week, and I find myself in a different continent.

sunset-porch-2

Under an African sky – in front of my eyes

I returned to Africa a week ago after an unexpected, and unwelcome reason for extension to my stay in Scotland. I should have returned two weeks earlier, after a short visit but things always take a surprise turn in that post diagnosis cancer world. I am fine, no nasty cancer surprises but I can attribute what happened directly to cancer.

So what happened, that warranted hospital admission and being unable to return for two whole weeks? A nosebleed, that’s what. Yes, a nosebleed. And one I blame unequivocally on cancer!

It started fairly innocently just before I had an optician’s appointment. One of a series of things to be done, while on home leave. The bleed would not stop, and reluctantly I had to cancel the optician. I pinched my nose, and waited patiently as the time for another appointment approached. The bleeding continued and worsened. I called the medical practice and was advised that I should go the Accident and Emergency Unit at the local hospital where they would be able to deal with the bleeding. The last thing I wanted to do, but with my history and being on blood thinners this was the correct and only course of action.

Treatment was not pleasant or nice, and for something as trivial-sounding as a nosebleed it was frightening to see how quickly a situation can become worrying. I was admitted to hospital and with the various procedures the bleeding was eventually staunched. I was allowed home the following day, with a strict set of instructions. No hot showers, no exertion, no flying or travel and the worst? NO TEA! That was a serious struggle. I have never craved tea so much in my life! But heat or exertion can re-start the bleeding and that is not a risk to be taken, so no tea and no immediate return to Africa.

How can I blame cancer? Quite easily in fact, the nose bone is quite clearly connected to the cancer bone in my case. Blood thinners were the cause of the nosebleed, and those blood thinners are a consequence of the Pulmonary Embolism I had, which was attributed to Tamoxifen. PE is a relatively rare but dangerous side effect of Tamoxifen. And of course,Tamoxifen is prescribed following hormone receptive cancer diagnosis. Thanks, cancer!

The sides and afters of cancer and its treatments continue to rumble on and we are reminded that even at times of NED (No Evidence of Disease) we exist with vulnerability and fragility.

I am enormously thankful that this medical hiccup has been dealt with relatively easily, but my confidence has again been damaged. I am approaching 7 years from diagnosis and am in pretty good health overall. Yet the fallout from cancer, while it might not be visible or evident apart from to me, is not to be underestimated. Life is fragile, precious and unpredictable. At the hospital, the ENT specialist advised me to be cautious and not to trust my body as it has let me down before. Interesting words from a doctor, validating anxieties and vigilance.

So I am pleased to have returned to my new life in Africa, though being in three continents in as many months has proved disorienting briefly. It is good to be able to look ahead with no immediate plans of long distance travel and to concentrate on my reorientation. My three word mantra for the year powerfully reminding me of my focus for the year. The time is right to seek to crystalize and settle now and I have a very clear reminder of my middle word – nurture – timely and so pertinent.

porch-sunset-1

I returned home yesterday late afternoon as the sun was sinking in the sky and I was treated to a spectacular sunset. And I was present in every sense to witness and appreciate it. With no thanks to cancer!

 

Lymphoedema? Seriously? Life following diagnosis is just not that simple……

Recently many changes in my life have been underway. One major change which has impacted significantly on me had been the closure of the place where I have been swimming in the mornings. I knew this would be tough, but it has had even more impact than I had expected.

The facility closed to members on July 1 but I was soon on home leave. Furthermore, rainy season always disrupts swimming plans. Every night my ear is always keenly listening for the sound of rain through the sound of the fan. If the rain is heavy, the swim is postponed. Sometimes a full week of postponed swims passes in rainy season.

yangon monsoon

 

Aung Min Gaung River 1Now that the rains are starting to abate, I should be able to swim more often. I need to make plans.

But the gap this year has been too long. Very few swims in too many weeks.

Over the past weeks, I have also been experience increasing pain in my left arm. Twang Arm. I mentioned this to my Doctor here in Yangon and he told me exactly what I did NOT want to hear. What I had not even told myself.

Just a few weeks before the 6th anniversary of my mastectomy and the grand removal of all lymph nodes in my left arm I  developed lymphoedema. These are not my arms, but a stock image of what it looks like.

lymphoedema

Seriously?  Yes, seriously. Sad Face. Angry Face.  ARE-YOU-KIDDING-ME? face.

I am pretty certain that there is a direct relationship between the lack of swimming and the intrusion of this unwelcome bonus condition.

So I am on a quest. As the rains abate, I am seeking out another option. You have to factor in a house move to my recent changes, so I am also testing out new geography and facilities.  I have already checked out one place and had a test swim. This is not quite so easy to get to, but it is a possibility. There are two great pools, a 30 metre and an 33 metre pool. I do not think there are any kingfishers and it is a great deal busier but that is life.

I have always been convinced that the almost daily swims from very soon after surgery, really played a part in keeping lymphoedema at bay. Now I am going to see if I can reverse this and at the very least prevent it from getting worse. It is mild at the moment, and I must stop it from getting worse. Oh and does anyone have any idea where and how I can get a lymphoedema sleeve in Yangon?

lymphoedema sleeveAs October advances with its array of messages around Breast Cancer, I want to add my own message, which is “it just isn’t that simple“. I am happy to be living with NED and want to stay that way, but life after diagnosis just is not that simple. Lympoedema is just one more bonus in the post diagnosis life, as I have discussed before. Thanks but no thanks cancer, indeed.  These bonuses include:

  • A digestive tract which remains sensitive following the ghastly gastric effects of chemo.
  • I have difficulties with memory too, my personal memory card is none too reliable and has particular dislike for. This is linked to  “chemobrain”- a level of cognitive impairment “thanks” to chemotherapy which is now more recognised and understood to be very real.
  • The pulmonary embolism which tried to get rid of me in 2012, and for which I still have to take blood thinners and undergo regular checks.
  • The failed thyroid, which again needs daily medication.
  • Peripheral neuropathy in toes and fingers. Not severe but enough to affect mobility and make me walk clumsily to make others notice. Enough to make me trip and fall too regularly.
  • Brittle and constantly breaking nails
  • Highly sensitive skin – which cannot tolerate sticking plaster or bandaids (depending on the part of the world you come from 😉 ), and which can sense the presence of a stray hair through several layers of clothing. This includes the extremely sensitive soles of my feet
  • Excruciating night time, and other time cramps.
  • Last and in no way least, is Twang Arm which remains seriously corded and which is now clearly laughing up its lymphoedema sleeve.

Again, I need to respond by stepping up my game and squaring up, no matter how exhausting this is.

I am not afraid to shout out that I HATE cancer, I HATE the way it continues to sneak in surprises and knock you when you are still getting getting back to your feet.

Life after a diagnosis of breast (or any cancer) just is not that simple.

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?

tomorrow

October 2 – Happy Cancerversary!

Silence and words

Silence.

There has been a deafening silence here for too long. Silence usually, almost always, in this space is a sign of struggle and something not going well. Too often this has been related to cancery stuff.

That is not the case right now. Silence has been due to a long protracted situation which I cannot yet discuss here. But it is NOT cancer related, nor related to my health at all. The checks are very soon, but for now this has nothing to do with cancer.

While this struggle is likely to be dominant for some time, I am trying to pick up the electronic pen again and at least communicate. Trying to keep this space alive.

During these times, it has been particularly striking that my three words for the year have been enormously important. I have been ever reminded to breathe, to gaze at stars and to move forward and realise in its many senses of the word. So it was surprising to me that I have been sought out by three more words. Three words which speak specifically to this situation. Three words which sit within the main three word mantra of Breathe, Stargaze, Realise, but which recognise that I need something more focused.

Those words are:

Dignity – this reminds me that no matter how difficult things become, it is critical to maintain my own dignity and respect the dignity of others.

dignityContemplate – I am tempted to react and respond in a knee-jerk manner, but some changes and actions need to be thought through and considered carefully.

LP April 1Beacon – a beacon is a guiding light which shows the way ahead, it shines light in very dark places and it provides hope that there is a better and lighter place ahead.

Light-on-the-horizon-for-Lights-In-The-Darkness-post

This too shall pass. And while it will take time, I have these words to guide and look after me.

Realise – a review and a commitment

I have written in recent weeks, about my three words for the year. That has surprised me a little, as I usually revisit them later in the year to take the pulse on how they are working. But this year, there has been an unexpected nudge to check in early in the year.

Perhaps there is a greater need than ever for me to be guided by my words, and this is why prompts have come my way. And a lunar eclipse is a pretty impressive prompt!

It is especially timely for me to talk about my third word, realise. And I need to muster a little courage for this.

I have been writing this in my hideaway in the Laos hills, in the space where I found peace, inspiration and healing over the New Year. We have a week of leave over the Thingyan Water Festival and New Year, in Myannar, and I knew that I needed an escape from the intensity of recent weeks and months, and from the watery mayhem which takes over much of the region. As soon as the medical checks were over and Dr W2 and his flowery Songkran shirt had given me welcome news, I moved to firm up arrangements for a break I eagerly sought back in the hills near Luang Prabang.

LP April 1

The perfect creative space.

LP April 2

This is a very special space, not for everyone. If you are seeking entertainment and sophistication, gala dinners and spectacle then this is probably not for you. Entertainment is largely self made – there are treks to nearby villages, waterfalls and hillsides, a swimming pool and surroundings which draw serious numbers of butterflies which need to be watched as they go about their butterfly work. There are games such as scrabble, and puzzles. The food menu does not span a large number of pages, but the food is fresh, delicious and the vegetables grown in the organisc farm which is part of the project. Here there is no television, but there is a small library with books in a number of languages. Here there are no selfie sticks and gadgets are rare. People chat instead of gazing into smartphones while their thumbs do aerobics. In fact there is not even any wifi here so it is truly disconnected from the buzz of the outside and online world. And I find that enormously refreshing.

LP April 3

This is a truly tranquil space, and I occupy my time by walking, swimming (the temperatures are much warmer now and the water welcoming), photographing butterflies, reading and writing. I have especially been writing, and writing in such an inspiring place, where the distractions are mainly in the form of butterflies.

And that is where realise comes in. I have promised to myself that I will deliver on my main writing project by the end of the year. This is where I need courage because if I share here what my plan is, then I have an additional responsibility to make it real and deliver.

So here goes. Deep breath………

I have alluded in passing to my writing goal. Publication of Dragonfruit last year was a major life achievement for me, in having some of my writing appear in a proper book. This has pushed me to take this a stage further and produce a book with my name on the front and that is what I have been working on in the Laos hills, in tea shops in Yangon and green and inspiring spaces such as Bago.

Now I want to share a little more detail as the work takes shape.

There are two key aspects to this memoir. Firstly, insights and accounts of life and work in the 2009/10 Myanmar when none of us had any inkling of the changes ahead are told through my first year there and accounts of ways of life which have evaporated and disappeared. And of course, the diagnosis and treatment of breast cancer in this setting.

My aim is to produce a memoir of (a little over) my first year in Myanmar. It will span from June 2009 when we were waiting for our paperwork, through settling in Myanmar when things were very different, travelling extensively through the country in my first three months before being diagnosed with breast cancer. The work then charts the experience of single-breasted, bald, wheelchair-using, frequent flier commuting between Yangon and Bangkok for treatment, in an environment where I did not speak the language, and there were considerable practical, logistical and paperwork challenges. The memoir takes us through to November 2010 and my first visit to Bangkok following treatment which is not for medical reasons, as the world watches the Lady, Aung San Suu Kyi being released from house arrest following the first elections in two decades in Myanmar.

Back when I was diagnosed in October 2009, I don’t think that anyone had any idea of the changes ahead either personally or contextually. This is a combined account of a country facing unexpected and enormous change, and that of an individual woman facing an unexpected journey. In addition to sharing the detail of the disease and the treatment, this memoir will delve into the emotional and psychological facets of a cancer diagnosis and the unexpected elements – special friendships formed through a common cancer experience, the world of internet cancer and social media and its role in 21st century cancer yet in an environment which was closed and enigmatic to the outside world. A real example of tropical cancer, and in fact cancer in the unknown and mysterious Myanmar/Burma.

Living in Myanmar (Burma) and being treated in Bangkok provided a background ranging from the amusing – (such as trying to find a prosthesis when the market is focused on perky boobs which are perhaps more targeted for Thai Lady Boys, or a wig when the colour options are black or black making a chemo pale foreigner look like a Goth or aging rock star) – to the heart rending (being on the other side of the planet from family, the shock and disbelief upon hearing the cancer word), and to the bizarre (undergoing radiation therapy while Bangkok was on the international stage during the “Red Shirt” protests in May 2010) when Bangkok erupted in violence and flames which caused additional stress and uncertainty and added an unexpected perspective to those days.

I have a working title for the memoir, which needs a little refining before I can share, but here is a clue…

LP butterflies 1

The commitment I have made to myself to realise, is to produce a draft manuscript for the end of the year. To be a maor step forward in making this real. 

LP butterflies 2The Laos hills and their butterflies have provided a particularly inspirational space to take this forward considerably away from the distractions of the outside world.

Part 2 of the Long Wait

Thursday 9 April, 08.15 am.  Wattanosooth Cancer Centre, Bangkok Hospital

This is the second part of my blah.  I had just had the radioactive dye injected into my bloodstream and had 2 hours to wait for the scan.  I found a quiet space in Starbucks and started to write……..

Between the dye injection and the scan…

Here I am again. Mind racing. Heart racing. Blood pressure sky high, and that is according to the number on the “vitals” check rather than my own assessment. And radioactive dye seeping through my body, finding its way into my bloodstream, bones and, according to the information sheet, my urine. Nice.

I have to drink at least a litre of water, urinate as often as possible. And get this? (Sorry if this feels like too much information, but in cancerland there’s no such thing as too much information} – when I go to the bathroom I must use toilet tissue and not the water hose which is the norm in this part of the world. Apparently that could interfere with the reading.

Here I am again. A Bangkok Hospital wristband with my name, hospital reference, age in years, months and days and the date of “admission”.

Here I am again. In Starbucks. Downing gallons of water and drinking a bucket of Earl Grey tea, according to the instructions. And writing. Again writing. Just like I was in October 2012. Trying to process the extremes of thoughts in my mind, yet with that exhausted, fatigued sense of “whatever”. Yeah, whatever. Or whatever happens. Whatever, anyway. I am almost past caring, I want to know what is causing the pain. Yet I want to know it isn’t cancer. But even if it is, I want and need to know. It is the not knowing that is so exhausting.

This just doesn’t get any easier, for me at any rate. Five and a half years ago I was diagnosed. Almost exactly five years ago I had my eighth cycle of chemotherapy and was preparing for radiotherapy. That radiotherapy took place, here in this hospital in the bunker I walked past to change into today’s inauspicious peach coloured hospital gown. Then two and a half years later in October 2012, I was back (not counting a few 6 monthly checks with the radiology oncologist which were more of a social chit chat). I had found myself here after Dr Wirote expressed concern at raised tumour markers. That had been totally unexpected. Utterly out of the blue. Back in October 2012, he’d sent me for a CT scan, my most hated procedure in terms of diagnostics, and a bone scan. The CT scan was a familiar horror. The bone scan was an unknown terror. At my request, Dr Wirote packed me off to these procedures tightly clutching a pack of 10 Xanax. I had swallowed one before the dreaded CT, another that night to help me sleep, and another the following morning to see me through the unknown and uncharted territory that was a bone scan.

I was “pleasantly” (if you could go so far as to say that) surprised that the radioactive dye injection for the bone scan was way easier than the CT. No IV line in the hand, or instructions to hold your breath while you just wait for the electronic voice that tells you they are about to inject the dye. No rush of heat, no sensation of bladder release, dizziness sweeping over you. It does not last long but it is long enough. No electronic voice telling you to breathe in, hold your breath, breathe out, don’t move. Yuck I hate the CT contrast dye and was enormously relieved that the bone scan dye is so much gentler in comparison.

Or maybe that experience was aided by the 3 Xanax in 2 days in a body that is not familiar to Xanax. Whatever it was, with the dye injected, 2 hours before the scan and a dye with no reactive sensations, all there is to do, is lie there the whole time while the scanner does its work. It is a bit like a massage without the massage, if that makes any sense. Maybe that was the Xanax.

So I am pretty chilled about the scan this time, although have still taken half a happy pill just in case there are any surprises in the procedure.

If I am chilled about the scan, what about the results? Now that is a different story altogether. This time there is a symptom which needs to be checked out. The spinal pain. My mind is doing what it did when I first found the lump in my breast. I veer from “it’ll be fine. Plenty of possible causes – old compression fracture, that fall from a horse in Mongolia which landed me right on the base of my spine, calcium depletion from Femara……” oh yes, plenty of possibilities. To the other extreme “shit. It is cancer in my spine”. There is a real possibility of that. And from there I enter a new and unwanted space.

And that is where I need to stop thinking, but also why this is such an excruciating space to be in.

home sweet home 3