A breath of fresh air

Words are still few, as I absorb the past days and weeks.  My break was just what the body and soul had craved.

I walked for miles in sleet, hail, sunshine and blustery wind, dined on freshly caught west of Scotland seafood in “Local Hero” style settings, found myself stranded “over the sea to Skye” when the ferry broke down, wandered along the silver sands of Morar, spotted seals bobbing around in the choppy waves in the bay and got lost on the highly straightforward circular walk around Mallaig.  And weirdly Twang Arm behaved, usually it squeals when I walk any distance, yet it seemed to understand that now was not the time to cause grief.  There was enough already.

Stranded on Skye

Of course there are many photographs.  Many dreadful images as I failed to master the sophisticated functions of my fancy new camera.  Many images, ready for the delete button as I experimented with my new acquisition.  Being surrounded by such incredible natural beauty though, has ensured that there are some memorable images which I will organise and share these in the coming days.

Most significantly though, I was repeatedly made aware that I was surrounded by regrowth and renewal.  Tiny buds on the trees,  little shoots of grasses pushing through the ground, delighted white fluffy lambs appearing freshly laundered as they scampered around the hillsides, prolific spring daffodil bulbs and new wild flowers shivering in the winds.

Primrose

Reminding me of the precarious balance that is life and death.

 

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Shifting Focus

These are strange days, ones of some kind of unseen transition.  A transition in the emotional sense. I am caught off-guard by unexpected tears, prompted by something unknown yet powerful. I feel an abrupt shift in my foundations.  The psychological rock upon which I stand has been shaken and I find myself stumbling, a little uncertain and unclear of my path. Alone yet not alone, surrounded by love and support.

So I am shifting my focus a little.  I am heading away for a couple of days of solitude and reflection to stay at the north western coast of Scotland. I will breathe in the wild blustery air, listen to the sea,  watch the birds, gaze at the wild flowers as they peep up through the ground seeking out the springtime sun and absorb the healing atmosphere.

I will also take my new camera.  I will see if I can persuade it to share its secrets and I will try and work out how to use it to capture a fair impression of what I hope to see.

This is a fitting time to change my background image, and I am replacing the previous image of the woman in Yangon with an image of Scotland’s wild west coast, looking back to the island where my father rests.

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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

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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

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.

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.

Not when, but if? …… Surely not!

As I near the finish flag in the Triathlon of heavy duty treatments I yearn more and more to get back to something like the way I used to be.  I know that it will take time to feel better, to get my own legs back and be able to do many of the things I used to be able to do.

The side effects of chemo have been a real mixed bag of delights.  It is no secret that I struggled particularly with the loss of my hair as I have ranted about it on various occasions.  I am sure it is no surprise then that one of the biggest things I look forward to is not seeing Dr Evil in the mirror any more!!

I remember so clearly, that day in November just after chemo 2 when I became bald.  I remember sitting in the chair at the hairdresser as the last of my hair fell to the floor under the clippers and being unable to stop the tears.  The shiny white scalp was such statement that I really, really was a cancer patient.

I have never been able to get used to being bald and I have really focused on the fact that hair loss from chemo is a temporary thing. In fact, the one thing I really need to hang onto at the moment is the belief that my hair is coming back, and coming soon.  After all it is over a month since my last infusion of Taxotere.  The fine covering of duck down must evolve soon into proper hair, mustn’t it?

So when I read this recent article suggesting that permanent hair loss after Taxotere is more common than we often expect, it was not a welcome piece of information.    According to the research, the numbers are people who experience permanent alopecia are not huge, but large enough to be significant – estimated at around 1 in 16.

One interesting discussion is that some people feel that they would have chosen not to have had Taxotere if they had been aware of this increased probability of permanent hair loss.

That really made me stop and think.  I cannot imagine that I would have even considered not having Taxotere, no matter how difficult I found the side effects, even if I had been aware that the hair loss could be long term.  Survival and recovery and the topmost priorities for me, given my diagnosis and pathology.

Oddly, the thing on my mind is more about how I felt that day in November particularly, and how I feel every time I look in the mirror at Dr Evil.  It was hard enough knowing my hair and I were parting company (no pun intended).  I do not know how I would have felt, and how I would have coped, if it had even occurred to me that this loss could be permanent.

I will be looking even more closely at the duck down from now on and let’s hope it does decide to thicken, grow and darken.