The glory of a head-cold

I never thought I would say this, but although I have a head cold and feel as rough as a very rough badger’s beard, I have a smile on my lips.  My throat is scratchy and stinging, my nose is blocked, my upper lip is cracked and tender and I can’t breathe.  I feel a bit fuzzy in the head (more so than usual;) ) and should be feeling miserable.

But I am not in a gloomy mood.  The reason is not that I have found some wonder drug that banishes the misery of a cold.  Nor is it that I am having a jammy “hey, nothing can be as bad as cancer” moment either.  No, the reason is because I have finally found something that Captain Paranoia is unable to penetrate.  With every tiny ailment, ache or pain, I have an immediate worry that it is a return of the cancer beast.  The dry spot of skin on my face which I feared was face cancer (and Dr W2 could not even see).  The dizzy spell a few months ago which I immediately attributed to brain mets, and in fact any little bump or twinge turns my mind first of all to cancer. However, a head cold is just a head cold, right?  I don’t even need Dr Google to verify my medical facts here.

I have an image of Captain Paranoia, standing in the corner, a bit like a comic superman type figure, with his hands on his hips, stamping his foot and scratching his head.  He just can’t find any reason to believe it is a clue that there is something suspicious going on!  Finally I have notched up a victory against him!


Recalling Radiation and radiation recall

Today is another Landmark Day – it is a year today since my last radiation treatment.  A whole year.  And it was not just the end of Rads, it was the end of what had been the triathlon from hell indeed.  The whole stretch of heavy treatment had started at the beginning of October 2009 with surgery and soon after, the first chemo.  What felt like minutes after the 8th chemo came the start of Radiation.  There was hardly any time to breathe as I trundled rapidly along the treatment process.

And then, finally I was locked in the Bunker for my final session of beeps and zaps, and then I was allowed out into the big wide world.  I could finally make plans to get back to the UK and see family and friends in 3D who had been holding my hand virtually all the way through.  After months of being on a loop between Bangkok and Yangon, staying away from crowded places, napping several times and day and counting the spaces between treatments I was suddenly FREE!

So here I am a year later.  Filled with a mix of emotions and looking and feeling like a different person.  I had not been expecting that strange “after the treatment” phase very helpfully discussed in Dr Peter Harvey’s article, and often called the “new normal”.  It was impossible to imagine that I might rebuild after the destructive yet life-preserving rounds of treatment.  But I have indeed re-built.  I have hair again, thank heavens, even if it is still the wrong colour.  I am much much stronger and fitter.  I have re-gained my independence.  Of course I live looking over my shoulder with Captain Paranoia feeding my fears, but that is part of the deal.

There are, however, the obvious reminders.  That scar of course.  Twang Arm.  My port.  Additionally, I had a rather unexpected and unwelcome reminder of radiation last month.  After I had my port flushed, as usual a sticky plaster was placed over the puncture mark.  As frequently happened, my skin became a bit irritated underneath the plaster and then when I removed it the folowing day, a layer of skin peeled off with it.  I was gifted a beautiful, elastoplast shaped wound to accompany my port scar.  A friend joked that I was aiming to remove my port by peeling it off layer by layer!  I might give it a try if it is less painful than the surgical way?

I have since learned that this tenderness and irritation could well be linked to what is euphemistically called “radiation recall” so that is something else to talk to Dr W about when I see him next.  It cleared up with careful treatment but my skin continues to be very sensitive thanks to the combination of surgery, radiation and chemo skin and the aggravation of a hot and humid climate. It is something else to keep an eye on and something else to remind me.

For today, though,  I am glad to be in such a different place.  I am happy to recall that last dose of radiation and everything it signified.  I am particularly thankful that this year my eyes are open to seeing so many things which I didn’t see last year.  I completely missed the jacaranda blooms which I love so much.  They must have been there, but out of my view in my sheltered routine to and from the hospital, keeping my head down because of the troubles in Bangkok.  So this year I have been blown away by the variety and splendour of so many different blooming and blossoming trees in so many different colours.   I am sharing this picture from my field trip of a week ago, and a glimpse of the amazing blossoms, signs and symbols of regrowth and regeneration that surround me, which I completely missed last year.

Emotions stirred and thoughts provoked

Since writing about the unexpectedness and rawness of emotions sparked through friendships I have developed purely online, my mind has continued to ponder and I have found myself exploring this further at times at all sorts of times of day and night.  The reactions and varied comments, and even the flurry of twitter activity clearly told me that I am far, far from alone in this, and I guess that is at the heart of the matter.

There are a number of themes to emerge from the subsequent comments, discussions and blog postings and a couple of these have particularly taken my attention.  One theme to emerge is a comparison of the nature of online and “real life” friendships, or what I have seen termed “3D friendships” and the fact that they can feel in some ways as if they are more profound.

I also find the question of “overlap” fascinating.  This is where firm online friends meet in real life, or 3D.  The Accidental Amazon described meeting with 5 other feisty Breast Cancer Blogging Advocates at the recent  National Breast Cancer Coalition the US.  These women knew each other online, particularly through their blogs and it must have been a truly special if somewhat unreal experience to meet in person, as AA recounted in her comment on my unexpected emotions post.  On a similar vein, it was warming to read M of Journeying Beyond Breast Cancer as she blogged about meeting up with an online friend recently and talked about how different that face to face meeting was in comparison with her expectations.   I would love to meet my online cyber sisters and friends and wonder how we would get along if we did have the chance to connect in the real world.

The theme which has caused me the most reflection is that of why we become firm “stranger-friends”, sharing personal details about our illness and feelings, without knowing or even protecting our names and other identifying information.

When I reflect back over this whole cancer experience, I recall discussing my blog with family members, anxious to protect their privacy as well as using the blog as a way to update detail in a way which they could choose the level of detail they wanted to know.  I had realised that when I was sharing updates and news I would focus on the practical aspects of the diagnosis, treatment plans, side effects and of course, matters such as hair loss!  And let’s be honest there was plenty of that to talk about.   However, we never ventured far into the topics at the root of those scary, dark thoughts and fears which would keep me awake at night – being confronted with my mortality, my fears and my sense of vulnerability.  It is no secret that I started blogging mainly as an outlet for offloading those thoughts.  Rather than allowing them to feed on each other and grow, taking over my mind, I started to compose these thoughts into prose and the early thoughts even took a poetic form.   These enabled me to take control over thoughts, crafting them into something I could be proud of, rather than something to feed my fears.  Many of the words on this blog were formed during the hours when souls usually sleep and troubled minds make trouble.

How does this relate to our online relationships?  I find that the level of detail that I put on the blog is greater than I would or could discuss in person.  Without a stage to myself that is!  Let’s face it, if I were to recite or share a fraction of what I post here, it would resemble some long winded monologue!  In a regular conversation we tend not to talk in that level of detail.  A conversation usually does not allow the free rein that a blog posting does.  When you add the deeply personal writings which we put online with our interaction, a link is made, often a feeling of close friendship, generally reciprocal and one which can develop quickly into a deep emotional connection.  The fact that the words we share are not bound by the diversions of face to face discussions means that our thoughts and ideas can develop and be expressed in a continuous train of thought, without diversions, interruptions or the subtle body language signals that guide a spoken conversation.  There are no raised eyebrows, or sharp intakes of breath to tell us while we are posting that we should move onto another topic, or give the current one a rest.  Being able to process and express these ideas is enormously healthy and helpful.  The fact that our site stats tell us that someone is interested enough to read our thoughts, updates and rants often in great detail gives us the signal to follow through our train of thought.  We lay our hearts and minds out for all to read in the public domain.

The beauty of this is that it is so often reciprocal.  I greedily read the deeply, personal thoughts and accounts of so many blogs, often initially because our path is similar and then because we develop a bond of friendship.  By laying open our hearts and by reading and engaging with each other through comments, Facebook, twitter and sometimes personal messages, we quickly reach a level of intimacy and familiarity, deepened by a shared experience and in a context frequently of feelings of vulnerability.  I believe that this combination enables such a strong emotional connection,

When I look back at the thought process that I have followed even in this post, I can see that the act of articulating these ideas has enabled me to arrive at my own slightly clearer understanding of this unexpected phenomenon of the depth and powerful emotions of online friendships.  It has helped me to understand part of the question “why?” these friendships spark such deep emotions.  It does not even begin to explore the question “how” to handle these feelings.  However, that process of rationalising and attempting to understand and acknowledging in itself will prepare us and thus help to equip us to handle these emotions.

Even more powerful is the fact that so many of us feel similarly and this reassures us that we are not alone in far more ways than one.

Chilling in Chiang Mai – Part 2 of the Adventure

A quick glimpse of our Chiang Mai retreat – in pictures for now.  More thoughts coming on the subject of online friendships ………….

Chiang Mai was resplendent in colour, trees blooming (purple jacaranda, yellow laburnum, scarlet Kapok), brilliant pinks of Bougainvillea, fragrant frangipani and so many other tropical blooms.  We spent the days there with a friend from Kathmandu, reminiscing and wallowing in nostalgia.  Marvellous!

Chiang Mai nestles at the foot of a range of green hills, and a trip to the city is not complete without a visit to the hilltop temple at Doi Suthep.  A flight of over 300 steps leads you to a serene, spiritual and peaceful temple.  Accompanied by great view of the city

And my favourite image of the whole trip – this beautiful and serious picture of 2 young monks – posing for the little pink camera set on auto timer to capture their presence in the temple. 🙂

All in all, a true experience of harmony, vitality and adventure!

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.

Slow Train to Chiang Mai – Part 1 of the Adventure

The decision to travel to Chiang Mai by overnight train was an obvious one, truly representing adventure.

I have always loved train travel.  The longer the journey the better, and the more exciting.

When I was 15, I went on a school trip to Italy and we travelled there by train.  That is quite a journey from Scotland and was a real adventure.  Along with my school pals, we stayed up most of the night as we travelled through Switzerland, in awe at the lights we thought were stars, and then realised were houses high up in the mountains.

The following year, I visited my pen friend in France and again travelled there by train, but this time alone.  I am quite astounded at the confidence I had then, and can now well understand my mother’s anxiety at my insistence that I would be sensible and careful.  Indeed, she gave me money to catch a taxi across Paris between the train stations.  It was only many years later that I confessed to catching a bus and saving the extra for spending money!  I loved the journey, catching the overnight train from Stirling to London, the old boat train to Paris (oh those were the days) and then on to Brittany.

The romantic notion of the train stayed with me and I longed to buy an Interail ticket when I left school.  These wonderful tickets were available to under 25s for travel to most European countries for a crazily small amount of money.  I dreamed of Interailing to exotic places like Prague, Vienna and Budapest and further afield to the Scandinavian countries and even former Yugoslavia as it was then. For a variety of reasons this was not to be.  Domestic responsibility and lack of money meant that I passed the magic 26 year birthday threshold without being able to get that Interail ticket, something I have always felt very sad about.

A few years later, when I was studying at university (as a mature student) I spent 3 months in Belarus.  The country had just become independent following the break up of the Former Soviet Union.  To get there, we flew to Moscow and then by train back towards Western Europe.  My goodness, the Russian railway system is incredible.  Extremely well organised, and covering unbelievably long journeys.  Our overnight into Minsk was really just a little hop when you placed it alongside the journey eastwards towards Siberia.  While I was in Minsk I travelled with my fellow students, to St Petersburg, to Kiev (now Kyiv) in the Ukraine, to Poland and even to Vilnius in Lithuania for the day!  I was captivated by the long distance train travel, and particularly dreamed of one day travelling on the Trans-Siberian Railway into Mongolia and onto China.

I never stopped dreaming of long distance rail journeys.  So much so, that as I approached a certain milestone birthday over a decade ago now, a madcap idea took root in my mind. Rather than have a bit surprise party like many of my contemporaries, which I would have to drop hints about to make sure that one was planned for me, I wondered why I could not fulfil my pipedream of travelling on the Trans Siberian Railway.  The more I wondered why I could not, the more I realised that there was no good reason why not, and many good reasons why I in fact could.  I had also in my mind, a fantasy to see “those funny mountains” in China, the karst formations in the Guilin area .

The fact that one of the routes of the Trans Siberian ended in Beijing added weight to this becoming a realisable venture.  Cutting a long story short, I indeed spent my Big Birthday on this trip of a lifetime.  I boarded the train in Moscow one Tuesday afternoon and travelled further east than I had ever been.  Every kilometre I travelled took me further east and I crossed into Asia for the first time of my life.  We passed a white stone obelisk marked Europe on one side and Asia on the other.  Gradually the faces changed as we travelled eastwards, crossing time zones, as we continued through Siberia, into Mongolia and then into China.  The journey takes 7 nights, if you don’t stop off on the way.  My journey from Moscow to Beijing lasted 15 days with a couple of stops at the Lake Baikal area of Siberia and Ulaanbaatar (Mongolia).  I then travelled onwards and spent the day of my birthday cycling alongside the paddy fields at the foot of “those funny mountains”.  It was a marvellous journey, a true adventure and I loved every minute of it.  It had been intended to cure me of my wanderlust, but the fact that I applied for a job in international development only a few weeks after my return is a clear indication of how successful that was.  After this taste of Asia, I arrived in Nepal a few months later on what was to be the start of over a decade living and working in the continent.

So with this history in mind, and the past year which has seen me hardly able to cross the street unaided, you can imagine how important a step this adventure to Chiang Mai has been for me. It was a symbolic giant leap forward for me, even in the very attentive care of Thai Railways and hubby J – and of course NED.

I think that Thai trains are actually perfect for this kind of adventure.  The railway system is well organised, it is straightforward to book tickets and get information and the trains are very comfortable.  However, being Thai, it has that inherent exotic essence that British Rail can never have.  Booking our ticket to Chiang Mai gave me butterflies in my stomach in a way that I had forgotten.  I am used to an anxious type of apprehension over the past months, and this was very different.

I boarded the train like a child, preparing a little bag with essentials including a book, i-pod, snacks and camera.  After a couple of hours, the train staff came through the carriage, making the seats into very comfortable beds.  They made the beds, and even hung up little curtains so that there was complete privacy for every berth.  I have to say that I have slept in much smaller hotel beds in my time and my lower bunk berth was just about the same size as the EasyHotel room I stayed in last summer!

We rolled gently northwards overnight through the Thai countryside, waking to rainforest and misty jungle a couple of hours before we pulled into Chiang Mai.  And the best thing about it?  At the end of our break in Chiang Mai I had the whole experience to look forward to all over again!

Now back in Yangon, I look back on my adventure to Chiang Mai and realise that the train travel was probably the most healing, restful and adventurous part of the whole break.  And that is why Part 1 of the Adventure is dedicated to the journey!