Always on my mind

This blog started life very much as a breast cancer blog, in its own discrete space.  Gradually it has morphed into a “life and work in Asia with the cancer thing thrown in” blog with more talk about life and moments here than previously.  I realise that the past few posts have in fact contained “no talk about cancer” since the last round of checks in late March.  And that has to be a good thing.  It shows that cancer has a space in my life (unwanted obviously) but that it is not “my life”.  Life on the blog has been about Water Festival, changing seasons and the very exciting Dragonfruit news. But that does not mean that cancer is not in my mind and recently I read an article which really resonated.

The writer articulates how she thinks of cancer every day, more than three years since diagnosis. It is a wonderfully balanced article and sets out the ways in which cancer filters through, and not necessarily in a “gloom and doom” way. And that is why it resonated so clearly with me. If we think about cancer, it is not necessarily about fear but it is also about change, adjustment and loss. But there is a perception that to think of cancer frequently is unhealthy and negative and I realise that it is important to emphasise that is not necessarily so.

Similarly to the writer, I am reminded of cancer as soon as I wake. Firstly I lean over to take my synthetic thyroid before I get up to go and put on my swimsuit, stuffing my prosthesis in the left side. That’s my routine. I am not filled with fear or grief, but it is a nuisance and uncomfortable. How can I not be reminded of cancer? Even the act of swimming and cycling in the morning is motivated by the knowledge that I improve my odds with regular exercise. So before I start my day, there are Big Cancer Reminders right in front of my nose.

Cancer is somewhere in my mind when I make plans, particularly holidays or visits. I find it extremely difficult to commit to anything around the time of the six monthly checks and once I pass those milestones, my diary and planner suddenly spring to life. I was diagnosed in 2009 and dates far into the future felt beyond my own lifetime. I didn’t even realise that I thought to myself “well, I probably won’t be here to see that” when the announcement came that Rio would host the 2016 Olympics. But I did, with a pang of something akin to mild regret. By some cruel quirk of fate, that announcement was made the very day I met my surgeon for the first time and he told me that the masses were highly suspicious of cancer. Now as time moves on, even the Tokyo 2020 Olympics do not feel quite so unreachable.  Yet still I take nothing for granted. There are a lot of milestones on the cancer side of things, never mind other ways that I can be felled.

I am reminded of cancer as I walk gingerly, picking my way carefully with toes awkward due to residual neuropathy. Perhaps it is not cancer as such on my mind, but there is a firm link to chemo after effects and everyday mobility.

I am reminded of cancer as I prepare my weekly cocktail of medications, counting the days and making sure that the alternate doses of warfarin, 5 mg one day, 6 mg the next, are correctly calculated, looking at those innocent little Femara pills, which are so costly and which cause so many unpleasant side effects. It’s not being negative. It just is what it is.

I am even reminded of cancer when I reach into the kitchen cupboard for a tea cup and have to use my right arm because Twang Arm can only get there if I am on my tiptoes.

In fact I cannot count all of the reminders, and I do not need to. It is clear that the invasive nature of surgery, effects of treatment past and present, never mind the risk of recurrence, all contribute to visible and less visible reminders. The critical thing is to manage these and adjust. And for it to be understood that I am not being negative or tempting fate. My thoughts are valid and my fears, when they come, are valid too. And sometimes I am just really grumpy that I have to wear a prosthesis at all, fed up that it irritates my skin in a way that a natural breast never does and I just want to toss the wretched thing into the bin. Or I am frustrated that I always have to wear a high neck camisole vest to hide the scars. Everywhere I turn, it is staring me in the face.

Yes, the reminders are many and varied and essentially constant. How can cancer not be on my mind daily? But that does not mean I cannot and do not dream of being an old woman who wears purple! I have every intention of being that woman!

yangon rainy season 2

Waves

It’s a strange thing, grief.  We think of it as a process which moves in a linear way.  We think we are making progress forwards.  And then there is a moment, a memory, a scent, or piece of music.  Even the sight of a familiar food, and we are again ambushed by a wave of grief, washing over us.

Today, by some unseen alignment, two different posts arrived in my feed, both about grief and loss.  And at a time when there are seasonal prompts and reminders of my own grief. The birthday my father would have celebrated earlier this month.  The season reminding me that this time last year I made the sudden decision to return to Scotland to spend final days with my father.

Marie writes in her post, Still alive in a wound still fresh, about those unexpected moments when we see or read something which speaks to us with a strength which takes our breath away.  The other post I read today, beautifully titled Live forever, provides a privileged insight into the influences and memories of a mother and grandfather:

Two people who live forever in my heart had birthdays last week, my Grandfather and my Mother. Both were very dear to me during the time we shared and both continue to play a role in my life. They’re in my thoughts, my memories, my sense of who I am and how I want to lead my life

This resonates too with my own processing and coming to terms with that strangeness of grief.  I wrote last year that grief is within us, not without.  And that means that the love and memory for those we have lost lives on within us, along with the values and influences which shape and guide us.

Signs of spring - Lismore

Signs of spring – Lismore

The wound is indeed still fresh, our hearts still grieve.  Yet there is a gold nugget of life, that which lives on within us and which we must hold on to and cherish.

Within. Without.

As I was walking down our lane the other evening, I spotted several fireflies darting about.  One of those little moments, when the ordinary is exquisite, I immediately stored the sight mentally, adding it to a little list I keep. This is the list of snippets and experiences I keep, to share with my father when I phone or see him. It must have been no more than a nanosecond before I of course remembered that I would no longer have the opportunity to share these little moments. I was almost physically winded by the thud of realisation.

I had thought when I returned to Yangon that perhaps grief might be a little kinder given that I am not surrounded by daily reminders of my father.  I am not living in the same physical space and  do not have those shared routines constantly prompting and reminding. Such naivety.  Of course I am surrounded by reminders.  Loss is not something external, it is within us.  Contained within our emotions and memories. Losing someone does not mean that the emotional ties are gone.  They are there forever.

Those reminders are everywhere.  Because they are within me not without.  When I received a Father’s Day marketing email from Pinterest yesterday, telling me that it is not too late and I “still have time to plan something for dad”, I found it hard to contain a mix of grief and anger.  I do not still have time.  It is too late. This is one of those gruelling hurdles, the first Father’s Day “without”.  Without my father.  I never will again have the opportunity to have that Father’s Day phone conversation, the line crackling across the distance, as I share those little snippets which I have saved up.  But I can’t fairly accuse Pinterest of being insensitive.  It is my association and emotions which prompt the reaction it does, rubbing invisible little sprinklings of salt into my too raw wounds.  It is within me, not without.

Nancy’s Point talks insightfully about loss, and shares important lessons, such as:

Grief’s intensity lessens, but the loss is for a lifetime.

Indeed.

monsoon droplets, captured like teardrops

Loss is something we experience from within.  Not without. 

Gradually adjusting to living without the person we have lost.

Re-entry. Accomplished? Kind of……….

Re-entry back into the spheres of life and work has been accomplished.  I guess. At least physically.

re-entry

Re-entry into Asia, Myanmar and Yangon took place on Sunday.  I travelled on the overnight flight from Amsterdam to Bangkok and for once the flight was smooth with minimal turbulence. Towards the end of the flight, and as we were flying over Myanmar (ironically) the pilot advised us that we would be starting our descent into Bangkok shortly.  Almost as an aside he mentioned that there were thunderstorms in the vicinity of Suvarnibhumi Airport so there could be some turbulence. Now thunderstorms and flying as a combination freak me out a little, so I decided to instantly file the information in the large “denial” folder in my mind.

lightning and plane
That worked initially as we started the descent, and I even managed to stay detached when we had a few pretty bumpy encounters with soupy clouds.  Then – BANG! There was a huge ”THWOOOOMP” kind of noise at the window and the cabin lit up as we air-kissed a bolt of lightning.  Inside the cabin there a lot of squeals and exclamations (although I didn’t understand the words as they were mostly in Dutch, I clearly understood what they meant), and great gripping of the arm rests.  The stewardess did not seem as alarmed as we were, and told us that we were safer in the sky than on the ground.  To say that this seemed counter-intuitive is an understatement, as we all know that lightning seeks out the highest point.  Plane.  Sky.  High…………  (I have since consulted Prof Google about this and it seems correct, would you believe?) The following fifteen minutes as we approached the runway lasted at least three hours, but finally we landed safely to an audible and collective exhale of breath. Re-entry into Asia?  Accomplished.

lightning and planes theory

I had over three hours in the airport before my onward flight to Yangon, so collapsed into the secret comfy armchairs near the departure gates for a bit and concentrated on staying awake and not thinking about the stormy sky outside. Finally we departed, the skies had cleared and our short flight was uneventful and pleasant. In no time, I was through arrivals and heading homewards to a waiting cup of tea!  Sunday afternoon was heading into Sunday evening. Re-entry into Myanmar and Yangon?  Accomplished.

The time difference between Yangon and the UK is 5.5 hours at the moment, thanks to British Summer Time. Returning to Asia, I usually find more difficult to adjust to than the travel to Europe as you lose several hours and morning in my corner of the world is late night in the place I have just left.  Thanks to the overnight flight and the intensity of the overall visit, I was physically and emotionally exhausted, so managed to sleep fairly early on the Sunday evening.  Which was fortunate as most folks in the UK would just have gone to bed when it was time for me to get up for work on the Monday morning!  Which I did manage to do.  Although it did require a very deep breath to face my desk which had been abandoned so hurriedly when I left for Scotland a lifetime earlier. Re-entry into work?  Accomplished.  Pretty much.

Overnight on Sunday and Monday, my sleep was broken however, by a sound which I did not recognise.  It was certainly some kind of animal, emitting a noise a bit like a throaty bray of a donkey crossed with a deep quack of a duck.  It was so strange and I was so disoriented that I disturbed hubby to ask what it was!  He was naturally not so amused to be quizzed on wildlife in the small hours but was able to tell me that it was a kind of bullfrog.  This is not the usual “happy party” frog noises I hear during monsoon, and I learned the following day that this is the noise which the Big Frogs make to call for the rains because they have had enough of the oppressive heat and want their monsoon parties to begin.

bullfrog

This seemed to work.  I was not long home on Tuesday evening and had realised that the frogs were silent.  However, in the distance I could hear thunder rattling around and before long it was clear it was heading towards us.  I could feel the air cool and thicken and a wind picked up, agitating the trees as the thunder became louder and the flashes of lightning more persistent.  The rain started abruptly, pounding through the trees and beating against the windows as the storm passed overhead, thunder and lightning simultaneously crashing around.  And then, with no surprise at all, the lights all went out.  The power was gone and I was in the midst of a quadrophonic water symphony, orchestrated by a group of actors including the rain, wind, thunder and of course the lightning conductor.  (ouch!)

Now sometimes power comes back quickly, and other times it doesn’t.  It is just a case of get hold of the torches, blackout bits and pieces and wait and see.  After about an hour the lights flickered back on.  You could hear the collective sigh of relief and blowing out of candles across the neighbourhood, followed by another collective “oh no” as they flickered off again less than a minute later.  Usually that is a good sign.  It means that the power is almost fixed and should come on again soon. All the while, the mugginess and humidity seemed to intensify and the lights stayed off.  And, all the while, the power stayed stubbornly off.  In fact it stayed off all night.  Which meant very little sleep.  Hardly great when combined with jetlag.  Especially unhelpful for productivity or energy throughout a demanding working day.  The power was still off when I headed out to work and was still off late in the afternoon when I phoned home.

Wednesday evening saw writing group, so I was later home than usual that evening. And to be honest, the thought of another night in that discomfort was not pulling me home.  When I did arrive home the lights were on and I could hear music playing!  What a great welcome!  Short-lived unfortunately. Hubby gently broke the news to me that the lock mechanism in the bedroom door had broken and the bedroom (and small attached bathroom were inaccessible)!  My first thought was that my swimming stuff was in there and the morning swim now sabotaged.  Next thought was for my toothbrush!  Then for everything I needed for the next morning to be able to turn up at work.  Isn’t it just typical that the day you can’t access your everything, is the day you have an Important Meeting and need to be looking the part! There was no way that door could be opened though, at that time in the evening and the only choice was to sleep in the spare room, wearing random pieces of laundry and breaking into the spare toothbrush supply from our last visit to Bangkok.  Another sticky and uncomfortable night, though slightly more sleep than the eve. The lack of morning swim though, really did make an impact – it is always amazing just how much more energy it gives getting up an hour and a half earlier for the swim and cycle.

Happily the locksmith arrived early and had removed the whole mechanism and opened the door within minutes.  With a whoop of happiness, I was able to access my appropriate attire for the day and make a start not too much later than usual.  Re-entry into sleep patterns and acclimatisation?  In progress.

So now, thank goodness it is the weekend and the chance to regroup a little.  Saturday morning saw me draw up a very quick five sticky plan to guide the weekend, the first one in a while as this has not been relevant the past few weeks.

IMG_0645

So re-entry has at least physically been accomplished, though it is remarkable how different the landscape looks following our bereavement.  I guess it just takes time for our senses and emotions to readjust.

Slowly looking ahead

I am attempting to reconnect slowly.  There are so many heartfelt messages to respond to, the practical tasks to take care of, the need to take time with each other and the understanding that we are moving through this grieving process.

My father has been laid to rest, and I believe he is at peace on the island which was home. The winds howled, cancelling ferries the day before, the rains hammered down, warm words of comfort were shared and tears were shed.  It was surely a day to remember, for a multitude of reasons.  Those memories evoke a complex mix of sadness, loss, love, peace and thankfulness.

I am sharing here some of the words which were spoken, and some of the images of the day.

He is Gone

You can shed tears that he is gone,
or you can smile because he has lived.
You can close your eyes and pray that he’ll come back,
or you can open your eyes and see all he’s left.
Your heart can be empty because you can’t see him,
or you can be full of the love you shared.
You can turn your back on tomorrow and live yesterday,
or you can be happy for tomorrow because of yesterday.
You can remember him only that he is gone,
or you can cherish his memory and let it live on.
You can cry and close your mind,
be empty and turn your back.
Or you can do what he’d want:
smile, open your eyes, love and go on.”

(David Harkins)

***

 They are not dead,
Who leave us this great heritage of remembering joy.

They still live in our hearts,
In the happiness we knew, in the dreams we shared.

They still breathe,
In the lingering fragrance, windblown, from their favourite flowers.

They still smile in the moonlight’s silver,
And laugh in the sunlight’s sparking gold.

They still speak in the echoes of the words we’ve heard them say again and again.

They still move,
In the rhythm of waving grasses, in the dance of the tossing branches.

They are not dead;
Their memory is warm in our hearts, comfort in our sorrow.

They are not apart from us, but part of us,

For love is eternal,
And those we love shall be with us throughout all eternity.
Anon

***

Celtic Blessing
May the roads rise to meet you,
May the wind be always at your back,
May the sun shine warm upon your face,
The rain fall soft upon your fields
And, until we meet again,
May God hold you in the hollow of his hand.
Anon

Leaving Oban as the dawn breaks, over quieter waters than the eve

Leaving Oban as the dawn breaks, over quieter waters than the eve

DSC_0148 DSC_0149 DSC_0156

In this spirit, we are looking forward and preparing a fitting and meaningful plan in his memory.

The Malcolm Miller, of the former Sail Training Association (now Tall Ships Youth Trust) Image from http://www.orpheusweb.co.uk/bob.williams/sailtrain/1998-2001.htm

The Malcolm Miller, of the former Sail Training Association (now Tall Ships Youth Trust)
Image from http://www.orpheusweb.co.uk/bob.williams/sailtrain/1998-2001.htm

Transience

Seven days of incredible intensity.

Tears, peals of laughter, loss, gains, snowflakes, heartaches, woolly socks, biting winds, apologies, reflections, poignancy, hot steaming mugs of tea…….

a snowy welcome

A week in Scotland

IMG_0123

Packing now for warmth and tropical sunshine again -unimaginable in these blizzards.

Back again soon, for sure.

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.

Profit and loss – Cancerversary reflections

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

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

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

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

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

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

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

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

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

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

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

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

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

So I have truly gained a great deal.

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

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

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

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

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

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

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

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

Cancer, internet and unexpected emotions

It’s been a rather odd past few days.  I am settling back into routine after my Chiang Mai adventure (and yes there are still more updates on that in the pipeline).  I am at that lovely place just after a fairly big check and therefore at my least anxious about my health.  However, I have been prompted to reflect (again) on how much our lives, and in particular our lives since cancer, are affected by the internet.

It is obvious that the internet and social networking can play a considerable role in the whole cancer experience.  It has played a huge part in my own experience, being fairly isolated and far from my roots and family. There is a wealth of information (and mis-information) available on the net ranging from Dr Google’s viral approach to providing information through to the focused and detailed information and discussions on Breast Cancer and other dedicated websites.  There is lively and passionate debate on issues connected with Breast Cancer, particularly around the Pink branding and lack of progress on cause, prevention and cure. This debate is clearly enriched through wider internet reach.  Naively I used to think I was an advocate for breast cancer until I began to engage with and follow the debates and discussions and now I realise that I am a junior when it comes to advocacy and understanding of the issues.  I also believe that in a sense, Cancer unites us, in providing a common enemy.  The internet enables us to garner that unity and use it constructively.  For me personally, social networking and this blog have played a massive role in my cancer experience and do so increasingly.

There’s nothing particularly new in any of that, so what has prompted my sudden standstill?  I’ll tell you what.  Relationships and emotional connection with people I have never met.  That is what has made me stop and think.  I have made “friends” with a number of people through the internet – particularly thanks to the blog and Facebook, and to a lesser extent Twitter.  Some of these friends I have come to know pretty well, even though we have never met either in person or spoken.  When one of my cyber friends was stolen by cancer last year, I found that it affected me enormously.  I did not even know her name, yet we had connected through our respective blogs and been quite close.  Her death was a great shock and I found that I was unprepared and ill equipped to handle it.

Last week I read the very powerful post by another blogging pal, the Carcinista,  where she shared and discussed her decision to stop treatment.  What an honest, emotional and inspirational post from an amazing woman.  The blogosphere, Facebookworld and twittersphere shared her post and we seemed to share a sense of admiration along with the deep sadness at the stage of her illness.  Yesterday, I came online to the news that she had died.  Another young, remarkable woman had been stolen by cancer from her family and friends.  It took me right back to the grief I had experienced last year, and from the prolific messages of condolence it was clear that I was far from alone.  Yet, again, this was someone I had never met, and in this instance we had hardly communicated directly.

It seems that the internet brings us a whole added dimension which I feel is outside my familiarity zone and for which I am not equipped.  That is the emotional attachment to online friends.  How can such strong emotions come from connections which are in one sense actually quite impersonal?  It really strikes me as powerful that I shed tears for someone yet I do not know their name.  I must stress that this is not in the way that a film or death of a famous person can prompt tears and grief, but a deep and real sense of personal loss.   I also wonder how it feels for the family and loved ones who receive outpourings and numerous messages of condolence from way outside the traditional sphere.

While I will never be glad that I was one of those who was dealt the cancer card, I am thankful that I was diagnosed at a time when the internet has brought this added facet to the experience.  And if I do not feel prepared to deal with the added emotional dimension, then I need to do something about that.  I reckon that acknowledgement and reflection of this is a good first step.  It might be a new and strange experience bringing unexpected emotions, but I am truly glad to embrace it.

I am really not sure if it is appropriate or not to dedicate a blog post.  In case it is,  I would like to dedicate this post to the special people I have connected with “thanks” to cancer and thanks to the internet, in particular those who have been taken by cancer.

Loss

Loss

We never actually met
I never saw her face
or heard her voice
except through a strange
unreal, surreal link.

But we shared so much
became firm stranger-friends
bound together by a common
unexpected, uninvited, intruding disease
invading, consuming our bodies
too long undiscovered
too long undisturbed

We bumped into each other
in this virtual world
Sharing our tears of laughter and fear
Each other’s face, name
Unknown, unfamiliar
Yet holding each other’s hands
while pushed along our medical path
disease and drugs trying,
but unable,
to strip us of dignity

And then she was gone.
Stolen
Suddenly
Unexpectedly
From her family
From her friends

And from a woman she had never met