Accompanying baggage, starfish and secret wish lists

In the first two months of the year I have had an exorbitant amount of travel.  Which I love, if I am honest.  Even if it is draining physically, I find it energising (how illogical is that?!) and fills me with motivation, enthusiasm and inspiration. I get a real kick from visiting new places, soaking in the surroundings and exploring.

But even although I have been travelling on my own, I have not been alone.  I have been accompanied by an unwelcome presence. He has not been there constantly, but I keep catching him feeding me unwelcome snippets of information.  It is that wretched Captain Paranoia.  He has been intruding on my travels as I skip from city to city, airport to airport and street to street. He is lingering just behind me, as I explore and I sense his presence around me.  He is waiting for me when I get home too, smugly making himself comfortable, oblivious to how unwelcome he is.  Or perhaps that is part of his strategy?  He has been particularly disturbing my sleep.

It should be no surprise that he is around.  In just over a week, I have my next round of checks.  This time there will be a six month, rather than a three month interval between checks and it is causing added anxiety.  After all, quite a lot can develop in six months.  Captain P takes particular delight in reminding me of this.  I know I will need to ask Dr W about the pains I had back in December and as always I have convinced myself this will need some investigation.  The prospect of the blood tests and what the tumour markers might reveal also plays on my mind considerably.  This time I will see four doctors rather than three, as I have an annual post radiation check up with Dr C.  And four is an inauspicious number.  Plenty to feed an anxious mind.

i slept particularly badly on Thursday night. I would doze off for a while and then wake, looking at my watch, to find out only 14 minutes had passed since i had last checked the time.  i would toss and turn.  i would curl up under the sheet as it was getting cool, only to throw the cover away a short time later as I was too hot.  Knowing I would get up at around 5.30 am, my subconscious would prevent me from sleeping soundly.  But at some point I must have dozed off as I found myself paddling in a crystal clear sea.  The water was warm, and the water pristine.  The sunlight was dancing through the rippling waves and picking up the tropical marine life as if in a microscope.  I had a sense of awe and wonder as I picked my way over the white sands underfoot and felt a flush of delight as I spotted a starfish.  I have always wanted to see a starfish in the sea. As I looked more closely, I saw another one, beside some colourful coral.  And then another one.  This was too special to miss and with the water being so clear I paddled gently towards the shore so that I could get my camera and capture these amazing images.  And then I woke up!  But the glorious images and the accompanying emotion stayed with me through the day.  I could see the starfish every time I closed my eyes.  I could even re-call it when my eyes were open, if I am honest!

As I luxuriated in this self-made entertainment package, I realised that seeing a starfish in the sea is something I should put on my secret list.  My secret list is a kind of “things I would love to do or see and if I don’t make an effort I will find out one day I am too old or ill to do them”.  A wish list really.  This is secret wish list, with some pretty weird stuff on it.  Remember, it’s a secret…….

• Meet a blogging friend in a new place (repeat as often as possible)
• Buy a picture/piece of artwork at a gallery opening and watch them put the red sticker on it.
• Book into the Oriental Bangkok for a weekend.  Or maybe a night.  Or maybe just have afternoon tea there given the price!
• See a kangaroo in the wild.
• Visit a country with the letter ‘Z’ in it.
• See the Aurora Borealis (northern lights)
• Get funky, colourful nail art on my finger and toenails just for fun, just for once.
• See the rings on Saturn through an astronomy telescope
• See some of my writing in print.  In a book with real pages!

And now I have added

• See a starfish in the sea

I remember lying in my hospital bed after my mastectomy.  My head was trying to absorb the horror of the previous days.  I was trying to come to terms with the reality that my left breast had been growing cancer, and that it had been removed along with the 2 tumours it had been hosting.  Desperately trying to get to grips with the reality of a cancer diagnosis, I tried to escape by watching the TV in my room.  This was foiled by the Movie channel playing one film on a loop.  Can you believe they were playing “The Bucket List”?!  Over and over, again and again, and no matter what time I switched on, there it was, goading and taunting me in my immediate freshly diagnosed cancer mindset. I really want to differentiate between this secret wish list, and a bucket list.  In Scotland a bucket is another word for the bin, or trash, or garbage (depends where you come from).  I am thinking of another list which would be of things I do not want to waste good time doing and that would be my bucket list.  My “chuck it in the bucket list”.  It would probably have things like filing bank statements and tidying that box of old papers in the spare room.  But that is for another day.  For today, and the coming days I will focus on my secret wish list and re-live seeing those starfish and trust that it will keep Captain Paranoia at bay.

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A weekend in the second youngest country in the world!

Less than a week after returning from my meet up with Terri in Hong Kong, I had to pick up my travel bag again and head to Indonesia.   And from the area I was visiting, it was only a short journey to one of the world’s youngest countries – Timor Leste (East Timor).

But why would I be tempted to visit Timor Leste?  Apart from the obvious “well I haven’t been there before” reason which is always one very strong motivation.  There was another compelling reason to visit TL though.  In November, I had bid farewell to Dr H who had been looking me after all through my treatment.  In fact, she had been looking after me ever since the first time I walked into her surgery with the lump I had discovered a few hours previously.

As I had fairly recently arrived in Myanmar when I found the lump in 2009, I had not yet had any need to consult a Doctor. My first consultation with Dr H was the one where she referred me urgently to Bangkok for investigation. So my first visit to the clinic was a highly memorable one for both of us.   She was in touch with me constantly following the appointment, while we desperately tried to get necessary paperwork to allow me to travel, and she strongly argued my case when there was resistance to me being seen at the hospital she was referring me to in Bangkok.  The week of the diagnosis and surgery she called regularly for updates and to see how I was doing.  And bear in mind that we are talking international calls, where phone connections can be fragile.

I became a regular in the clinic as I travelled along the treatment path, and as an oncology patient I know I did get special treatment.   Such as appointments arranged so that I would not be likely to be exposed to infection such as after school time, chocolate frogs which are usually reserved for children following injections and painful treatments, phone calls to my oncologist in Bangkok or the oncology suite during the lost days of pneumonia and more recently port flushing problems.  I was looked after above and beyond the call of duty, for sure.

In November last year the various Doctors in the region transferred to new postings in what transpired like a kind of sideways shuffle.  Dr H was transferred to Dili, Timor Leste, and was replaced by Doctor M who coincidentally had been caring for a friend in a neighbouring country as she went through her treatment.  It was tough to see Dr H leave, as we had become friends as well as having a sound Doctor-patient relationship.  When she left Yangon I promised I would do my best to visit her in Dili.  If I was ever in that part of the region.  However, at the eastern end of the Indonesian archipelagos and only 400 miles from Darwin in Australia, Dili is not exactly on major travel routes and I was not sure how realistic a visit might be.

A few weeks ago, it became clear that would have to travel to Indonesia in February, and adding on a trip to Dili suddenly became a real possibility.  There followed a flurry of emails, flight enquiries and preparations.  Before I knew it, the trip was no longer a possibility – it was really going to happen!  I was booked to fly out of Indonesia after my visit there, and would have around 48 hours in Dili before returning to Yangon.  I would arrive just after lunchtime on the Saturday, and leave again on the Monday around the same time.  I was travelling to the second youngest country in the world, the furthest east and the furthest south I have ever travelled.  And I was going to sty with the Doctor I started the whole breast cancer experience with.  How is that for a turnaround in less than three years?!

I had absolutely no expectations about my visit to Timor Leste.  I believed it was the second youngest country in the world, South Sudan being the youngest.  (I have since learned that it is actually the fourth youngest country, the first new state of the 21^st century.  However I did not change the title of this post as the fourth just doesn’t have the same ring to it!)  I had not realised how close Timor Leste is to Australia until I looked it up on the map.  I had heard there were hills, but apart from that had no idea what the topography was like.  I was also extremely busy in the run up to my visit, so had very little time to devote to preparation or thinking about TL.

Descending into Dili airport, I felt myself gasp at the rugged, beautiful terrain as we flew towards land.  Steep, lush mountains and wide, gushing muddy rivers showing the rainy season landscape.  We landed on the narrow airstrip just a few metres from the sea, welcoming the sight of dry land underneath us in the blink before we touched down.   There was quite a military presence when we landed, perhaps someone important on my flight?  And of course the many blue berets of the UN as a sign of the turbulence of recent years.  And smiles, warm engaging smiles everywhere.

I handed over my application for on arrival visa with the fee, and by return of hand had a visa in my possession to take to the immigration counter.  A few minutes later I was in Timor Leste.  I walked through to the luggage carousel, and incredibly my little travel bag was the very first bag to arrive.  Now in all my miles of travel THAT has never happened before!  The opposite has though, and that is miserable.  Caught by surprise, I hauled my bag off the belt and trundled through to the arrivals area where Dr H was waiting for me with a warm welcoming hug and her car.

And that was the start of a wonderful weekend.  Within half an hour we were out on Dr H’s scooter, zizzing along the coast to get my orientation and little over an hour later we were out on the Dili Hash.  I joined the walkers, and that week the route was a gentle one along the seafront just before sunset.  I am not a regular Hasher, but enjoy a decent walk if it is not too hot or rainy.  Which it pretty much rules out most Yangon Hashes time, so I am more likely to be seen at the Full Moon Hashes.  Holding a Hash in the late afternoon, as is the case in Dili, seems like a very wise strategy.  But all of that is a divergence.  The Dili Hash was a wonderful opportunity to see more of Dili in the short time I was there, have some physical activity and to meet a number of people based in TL.  And it also served to work up a good appetite for dinner on the seafront.

I slept that first night in Dili, having travelled internationally, zizzed about on a scooter, hashed, dined and even swum that day!

I woke early on the Sunday morning.  Connected with the rehydration strategy for sure.  Dr H was up and about too and after a snack we decided to “walk up to Jesus”.  This is one of the “must do” activities in Dili.  Another jaunt on Scootie took us along the coast to the foot of the steps which led up through the trees to the impressive Statue at the top. It was a hot and sticky climb, but one which gifted a real reward in its wonderful views from the vantage point.

That meant we had earned breakfast!  So we then headed beachwards to a popular spot for a relaxing and fulfilling breakfast to replace the energy used going up the hill.  Brunch was followed by a visit to the Tais (textile) market with its colourful and fascinating tribal weaves.  We both left the market clutching bags of things we had not intended to buy.

There was just time to stop off with our goodies before heading out to a friend of Dr H who had kindly included me in an invitation to lunch.  It’s just as well that shopping uses calories which have to be replaced by lunch!

By late afternoon, it was time to leave and rather than heading home, which would be inconsistent with the amount of activity crammed into the day so far, we headed back towards the Jesus Statue and to the beach. The beach was a happy place, filled with families and lone souls, all soaking in the late afternoon rays and the sound of the ocean.  It was the perfect time for sun down swimming, and I kept returning to the gentle sea, picking my way through the corals trying to avoid scratching the still sensitive post chemo soles of my feet.   As the sun sank on my last evening in Dili, cloud formations gathering over the hills with their rainy season moisture contrived to gift the most glorious sunset.

Monday morning saw a different mood.  Dr H went out on her daily pre-dawn cycle ride, and I headed to the pool for a peaceful half mile swim before breakfast on the deck, facing the sea.  Then it was back to business. Dr H had a busy schedule and a full clinic, particularly due to the peak of the dengue season.  I had the daunting task of trying to put all my gear into the little travel bag.  I had not really accumulated very much, but textiles and work bits and pieces as well as a growing heap of laundry led to a bag which was struggling to be closed and straining at the seams.

Nonetheless, packing was successfully accomplished, patients treated and in no time I was heading back to the airport for the start of my return journey to Yangon.  It had been a wonderful, action-packed, warm and fascinating to Timor Leste and it had been marvellous to see Dr H in her new posting.

Looking back to the first time I walked into her clinic and met Dr H for the first time in September 2009, and remembering the very different place I was in then feels quite bizarre.  I know for sure that I could never have imagined a day when I would be visiting her in one of the newest countries in the world.

It’s that time of the year, is it?

I remember being awestruck last year when the new jacaranda blossoms first started to show.  I had not realised that Yangon would be so colourful.  I had not expected the absolute riot of colour which the flame or flamboyant trees would bring to the city.  It was an unexpected and wonderful surprise.

It was particularly wonderful, because the reason I had not been expecting these wonders was because I had been in the midst of the heaviest part of the treatment the previous year.  The latter cycles of the eight rounds of chemo, which caused greater and greater restriction in how much I could get around.  This was followed by a long spell in Bangkok while I had the daily radiation zapping.  So I completely missed this gloriously colourful show around me.

This was just one of several unexpected pleasures I experienced this time last year.  Another surprise I had last year, was the unusual placing of a small table outside a neighbour’s gate, as I was leaving home for my dawn swim.  As I left on subsequent days, I saw this table with pots of food and the two neighbours sitting near their gate waiting patiently, and noticed a couple of tables outside nearby gates too.  There could only be one reason for this.  One of the most beautiful sights in the early mornings across the country, and in many other countries in the region as well, such as in Laos, is a long line of robed, barefoot monks as they walk through the streets to collect alms.  It is simply heart stopping.  And it was clear from the preparations that a new route had been introduced and a line of monks was clearly expected.  It was a good few days later before I finally saw the monks.  They passed our lane at the same time every day, and this was when I would usually be in the swimming pool.  By the time I would get back home, the tables were gone.  One day I was late, and there they were.  A long, line of silence, serenity and spirituality.  Every day after that I used to linger, just waiting to see a glimpse of the line of monks before my swim, but the minutes would tick on and I had to move on to the pool or I would risk missing my swim.  Or being very late for work!

And then one day, the table was gone.  I think it was probably after one of the full moon festivals but I am honest not completely sure.  I think that the monks came down our lane for about a month, but again I am not completely sure.  All  I know is that the tables were no longer there.

So last week, my spirits rose when I left for my daily swim and I saw the table again outside my neighbour’s gate.  Every day this week I would leave before the monks appeared, and the tables would be gone once I returned.  So that is why, on a Saturday morning, when usually I luxuriate in a longer sleep, I was up around the usual time.  Instead of getting my swimming things, though, I slipped out through our gate and waited in the quietness of the lane.

And it was without doubt worth making that extra effort, as I had a very humbling and spiritual start to the day.

Achingly familiar?

I cannot begin to imagine going through cancer treatment as a parent of young children.  Physically it must take an enormous toll.  Emotionally it must be dreadfully difficult and psychologically it must throw up all manner of vulnerabilities and complexities.  As a parent your instinct is to protect your children, and I cannot imagine having to balance that with the ravages of a cancer diagnosis.  Yet, as I have seen time and time again, cancer does not discriminate in any sense and countless families with young children find themselves in the midst of this dreaded scenario.  The topic of parenting during cancer treatment will be the topic for discussion on the coming week’s Breast Cancer Social Media discussion on Twitter (#bcsm).

I will join the discussion, even though I did not have the responsibility for young children while I was going through my treatment. And the main reason for that is because one of the toughest things I have ever had to do was to break the news to my adult children that I had cancer.

Even though my own children were in their late twenties when I heard the life changing words, I still, as a parent, wanted to protect them from the frightening news.  News which terrified me, and news which I did not want to share.  Even though I was no longer responsible for their care on a day to day basis, I felt that I was failing them by having cancer. It is critical to ensure that you share the appropriate kind of and level of information with a child, the older that child is, the more they are aware of cancer and the more they are likely to be afraid.  When our children are adults, though, we know that they know only too well what cancer is and we know how frightening it will be.

When I first found the lump, I kept it really low key and I told virtually no one. I kept it close to my chest, in more ways than one, I guess.  I told myself that there was no point in worrying anyone because it might not be cancer.  After all we had no family history of cancer, and I held on tightly to the fact that 80% of lumps are benign.  What I did do though, was to go through scenarios in my mind for “just in case” I had to break the news.  That way I could prepare myself and then breathe a sigh of relief that I did not need to actually carry out the intended plan once I was sent packing from the investigations in Bangkok.

But of course, it didn’t happen like that.  I did not have any reassurance.  Late in the evening of 2 October I heard those life-changing words “this is highly suspicious of cancer”.  Telling my children was now inevitable.  I had to swing my plan into action and decide exactly when and how to break that news.  I would break out in a cold sweat thinking of it, trying to keep just a little bit longer before I turned their lives upside down, just as mine had been.

My plan didn’t quite work out.  I had hoped that they would both be with family, the morning after a family wedding and that there would be support around them.  So my first message was to my dear sister-in-law asking if she was with them.  Unfortunately she was not, but I was able to make sure she was on hand for support following the phone calls which were now inevitable.  I sent a short text to each, saying I wanted to phone and was it a good time.  My daughter texted back almost as before the delivery report arrived.  She sensed there was something wrong.  Why was I in Bangkok and texting when I was meant to be in Yangon with limited communication?  I remember listening to the ringing and just willing to prolong that precious time before I turned her world around.  Once she answered the phone, I knew that we would cross a threshold into a strange land, and never be able to turn back again.  And of course it was truly horrible, I can’t remember what we said but I remember how painful it was.  I tried to remain upbeat, focusing on the wonders of modern treatment and the fact that I had access to state of the art facilities and wonderful specialists. We also focused very much on the practicalities of getting information during and following my surgery. And at the end of our call, I had to take a very deep breath and do it all over again and destroy my son’s weekend too.  Knowing that I was holding that life changing moment in my hands was excruciating and I had no choice but to follow it through.

This has been very much on my mind over the past days as I have been working on this post.  Then yesterday, I received a notification from Facebook that I had been tagged in a post by my son.  The post referred to a football match he would be going to, a Big Game apparently.  At the end of the post there was my tag “Just hope mum doesn’t call me before the game this time…”.  I thought little of it, assuming that I had committed some kind of “mother-who-does-not-understand-the-importance-of-football” sin by phoning before the match and interrupting preparations, or making him late for the match.  A few replies followed, including “it wasn’t a cheery day last time there …… so I’ve bad memories to banish.”  And then, BANG, further down the comments and replies my stomach turned over as I read “It was the phone call from my mother that morning about the cancer that sticks in my mind ………….”   Unbelievably, as I was writing about that very phone call, my son was also re-living it.  Of course there is an element of coincidence in there, but moreso it demonstrates just how momentous those moments are and how much they are burned into our memories.  When I told my son I was actually writing about this at the same time his reply was “Mum – if you need any information about that weekend let me know. Scorers, time of goals, red and yellow cards – anything!” It was clearly indelibly imprinted in his memory, every single detail.

Since making those calls I have really believed that this was truly the toughest thing I had ever had to do, and I would have done anything in my power not to have had to put us through it.  I still have wobbly moments when I remember the calls, and still re-live them from time to time.

And then I discovered that there was actually something even more distressing and tough.  Something worse than having to tell your children you have cancer.  Three weeks ago, my daughter discovered a lump.  To begin with she did not tell me, as she did not want to worry me.  After all, we were dealing with my father’s ill health and worry about that at a distance so she did not want to add to that.  Eventually though, there was no choice but to tell me.  She had already been to see her Doctor at that point and been referred for an urgent mammo.  She was in that excruciating stage of waiting, waiting and going through every imaginable scenario in her mind.  The mammo appointment came through for last Thursday and I agonised while waiting for updates from the hospital.  Eventually, the desperately awaited message came – but with no real news. The hospital specialist had decided that Ultrasound scan would be more useful than mammo and referred her for the scan to take place as soon as possible.  The appointment also came quickly, for exactly a week later, for the Thursday afternoon.  Thursday as in the day before yesterday.  This was an afternoon appointment, which meant a late night update in my side of the world.  I kept repeating the “80% are benign” like some kind of mantra.  And surely the 80% must be higher for women aged only 31.  I chose to ignore the fact that the self same mantra had not worked for me.  I was in an impossible position.  I could not avoid thinking back to my own time in the ultrasound room, seeing that dreadful spaceship, seeing the technician pegging the contours of the various shapes and keying in text alongside them.  I could not bear the thought of her going through the same thing.  Yet, I could not bear to tell her how awful it was, in the hope that it would be different for her.

It was late on Thursday night, but not too late when I finally saw the message come in.  Palms sweating, I opened it.  The words told me that the scan showed clearly that it was a “cluster of cysts”.  No spaceships.  No “highly suspicious”.  No “sinister” or “cause for concern” labels shielding a need for further investigation and the dreaded change of path. No, they are simply cysts. Beautiful, glorious words “simply cysts”.  At last I could exhale and let out all those terrifying thoughts.

So we have all been re-living that life-changing weekend in October 2009 as we have been going through this latest test.  And for now we can breathe more easily.  But that can not take away the emotional torture we have all been through.  I am left with a consuming reminder that no matter how much our children grow and mature, no matter that they are no longer babies, infants or older children requiring our constant care, they are and always will be our children and we would do anything possible to protect them from the toughest things life throws in our path.

A new day

It fascinates me that the sunrise is different every day.  The sun rises at a slightly different time, and on our cosy place on the planet (just south of the Tropic of Cancer), it creeps northwards along the horizon as the weeks move away from the shortest days in December towards the longer, lighter days.  Then, after the longest day, it creeps southwards again.  Every day, the sun’s appearance is different.  The cloud formations are different, the light varies and the place where the sun first starts its ascent over the skyline changes too.

I remember the first winter that I started my sunrise swim.  It was late November 2010 and I loved watching the sun peek over the horizon around 6.15 in the morning.  As we moved through December I would leave home in the dark, as the sky was just beginning to show the first tinges of light and on the shortest day it rose at 6.30.  After a few days away for Christmas that year, I resumed the early swims eagerly set for the sun to start rising earlier. To my bewilderment, it seemed to be getting darker in the mornings, rather thanlighter.  By the middle of January, I was no longer able to contain my puzzlement and resorted to good old Google.  I learned that in fact the sun does continue to rise later and later throughout January and even into February.  How bizarre, and how contradictory to the fundamental sciences I had learned.  How could it possibly be getting darker when we had passed the shortest day?

Thank heavens for the internet, because I am not sure how I would have solved this puzzle without it.  I discovered thanks to Time and Date which is a wonderful resource, that 21 December is the shortest day, according to the length of time between sunrise and sunset.  However, the fact that the sunset is progressively later (by a longer time than the later sunrise) the actual daylight time does gradually increase by a few seconds each day.  Phew – that’s complicated and difficult to explain.  However a glance at the sunrise/sunset times will enlighten (quite literally) those interested to understand this more clearly.

In addition to the gradual progression of sunrise times, the sun also moves in a northerly direction as the weeks progress.  We are now at the time of year where the sun’s northerly path along the horizon moves forward visibly.  I am at a different spot in the pool each day when I first see that characteristic deep red, glowing sun as it first reaches over the horizon.

And there is a magical point on that path when the sun rises at a point which is directly behind an ancient temple distant on the horizon.  As it rises, it creates a dramatic silhouette of the temple against the soft light, reminiscent of a child’s night light.

It is a moment which quite simply takes my breath away.

Ethereal voices

It is approaching one month since the online community I spend a great deal of time in was convulsed by the shocking loss of two smart, articulate and wonderfully snarky women on one day.

It was evening in Yangon, and I was already in a rather fragile frame of mind as it was only a few days since my father had taken ill.  I was just checking my email for family updates before sleeping that Monday evening, 6 February.  After checking email, I flicked quickly through news and updates from my online friends for the last news of the day. I caught sight of a few tweets which stopped my heart – they were messages of loss and condolence.  With a sense of dread mixed with a need to know, I scrolled down through the tweets, my fingers trembling.  My heart stopped.  Right across the world, in New Jersey, where it was early morning, our dear friend Rachel had been taken by cancer.  I was unable to read the flurry of tweets, and the Facebook tributes which were flooding in, because of the tears in my eyes.  I knew she had been very ill, but how could this happen when her online voice was so strong and full of vitality?  The words on her blog posts, her Facebook updates, Tweets and other online interactions told clearly and factually of the toll which metastatic disease was taking on her body.  But her voice was another matter.  A combination of humour and a feisty spirit formed a voice belying the gravity of her illness.  It was simply inconceivable that such a voice be silenced.

Sleep eluded me that Monday night, unsurprisingly as I tried to rationalise and process this.  Still I headed for my dawn swim on Tuesday morning, ploughing up and down the pool, my mind on Rachel, my father, before returning home.  After breakfast, I opened up my window to the world, my laptop.  Because of the time difference, it was approaching time in my corner of the globe for the weekly #bcsm Tweetchat, which takes place on Monday evenings in the US.  I knew that we would have an emotional discussion, as Rachel has been a vocal and lively participant in the sessions and I steeled myself as I signed into the discussion.  Nothing, however, prepared me for the tweets in front of me. Tweets full of pain, disbelief and anguish broke the news to me of the unbelievable loss in one day, of Susan as well as Rachel.  The discussion was dedicated to these remarkable women, both of whom advocated tirelessly and tenaciously on the subject of metastatic breast cancer.  How on earth could these women, whose words were written with such passion and vitality, be taken?

This transported me back over a year in time, but to a similar emotional space. That of a crushing disbelief when I learned that my friend Bad Fairy had been taken by metastatic breast cancer in October 2010.  Bad Fairy and I had been diagnosed a few weeks apart in 2009 and started blogging around the same time.  Our experiences were very different but we connected through our blogs.  She would call by my blog and leave a sprinkling of fairy dust, and I would leave a classy gecko calling card when I visited her blog.  Her writing was refreshing, her ideas original and although she was dealing with metastatic cancer her voice was strong and full of life. At the time I did not realise that I would read her words, not truly comprehending the gravity of her disease.  The words told me how ill she was, but told with such a bright voice I missed signals that she was terribly ill.  I was unable to access blogspot at that time, and missed the last couple of posts she wrote.  When I learned finally through her husband’s post that she had been taken, I was bereft and utterly unable to comprehend her loss.  I could not equate the strength of her voice with the frailty of her physical body.

Another contradiction in my connection with Bad Fairy, was that I did not even know her name.  This reminds me of my friendship with Rachel.  We initially knew her as Anna, Anna Rachnel.  And then one day, I read her post about chest pains.  I was so caught up in her account of the investigations, fear and trauma of the chest pains that I almost missed her revelation.   I had to read it through more than once to catch the enormous step she was taking.  This was when we learned that her name was in fact Rachel, and not Anna.  Her footnote to that blog posting, written some time after the event, talked through the big step she had made of opening up and revealing her real name.  it took me quite some time to make the shift, but now I find it hard to think of her as Anna.  And I only learned Bad Fairy’s name in the last comments on her blog. There are so many complexities in our online relationships.

That sense of disbelief and even misunderstanding does not abate.  That disconnect between the voice and what it reports.  It compels me to question why I have difficulty in relating a voice with the actual language and content of the story.  Why is it that the unwritten elements of our communications convey such a strength and vitality and how can it be that they override the actual words?  I cannot pretend to understand why, but I most definitely know that it is so.

That contradiction between voice and body brings us something tangible though and that is a powerful and enduring legacy left of and by our voices.  The words have been written and cannot be erased.  The voices of our friends live on, in the online and other spaces storing them, but more than anything else, those strong voices live on in our hearts and minds.