A silly cut finger and fast growing cells

The most inane and banal of incidents can set off a trail into unexpected territory both familiar and unfamiliar…….

Just over a week ago, hubby came home with a gift he had received.  A proper Swiss Army Knife.  Those ones with all the gadgets and tools all artfully contained in the body of the knife.

swiss army knife

These are fascinating little things, and I could not resist having a look and exploring what tricks it would contain.  I gently pulled out a little penknife blade, taking care with my crumbly finger nails which have no capacity to grip. I teased out the little scissors and looked around for some paper to test them on.  Then I pulled out another mystery implement, wondering what it would be. Snap! The small blade which it belonged to flicked open and caught my finger tip, slicing a neat but deep cut into the finger. There is an instant of regret at such a careless action which is rapidly taken over by the need to act.  Thanks to warfarin, this small but deep cut was producing rather a lot of the red stuff and I needed to stanch the flow as quickly as possible.  With my arm elevated and the wound held firm, I finally managed to stem the bleeding and carefully cleaned the damage.

I was very quick to blame cancer for the greatest part of this unfortunate incident.  Residual peripheral neuropathy, thanks to chemotherapy (Taxotere) has brought me numbness in my fingers and toes numb toes.  Numb fingertips cause clumsiness.  It is not a very good idea to explore a Swiss Army Knife with numb fingertips, especially with added crumbly fingernails. Adding warfarin and its blood-thinning qualities adds a frisson of excitement to the mix. That is also directly attributable to cancer and its treatment.  And if I really want to push it,  I can also blame the lack of wisdom in meddling with the knife on the cognitive afters of chemo.

It never fails to amaze me, how much a tiny nick somewhere like the top of the index finger can impact on so many every day actions.  Getting dressed, eating, typing and holding a pen all became awkward and uncomfortable with the damaged finger.

The following day, I struggled through (happily it was a Friday) and was glad to get to the weekend.  I was especially worried that the cut might get infected in this climate, and that it would not heal given its depth.

So I was very surprised that on the Sunday, I noticed that the cut was healing particularly well and cleanly.  By the Monday you could hardly see the cut at all and now there is just a trail of dry skin which marks the scar.

And that’s a good thing, isn’t it?  Fast healing, clean barely visible scar?  All good.  So why did my head turn this into something worrying?  Why did I find it so hard not to associate the rapidity of healing cells with the rapidity of multiplying sinister cells.  How does a good fast growing cell differ from a bad fast growing cell?

It shows how vulnerable we are to those paranoiac thoughts, to those trains of thought that are barely logical or sensible yet take over a rational mind. A mind which is especially fragile in the run up to the next round of regular but scary scans and checks.

This is the story of a tiny cut finger.  This is also the tale of a tiny scared soul, about to pack the fatigued travel bag, braced for whatever is ahead and barely able to contain the fear and anxiety.  The afters and sides of cancer and its treatments indeed continue to wreak havoc on the body way beyond diagnosis.

Yet that is not a fraction of the sabotage it introduces into a sensitive and frightened mind.

shadow selfie blog

After Words

I was astonished by the level of interest and response to my “thanks, but no thanks” rant last week.  I was in part reassured to know that I am not alone in the physical and emotional space and that these “afters” and “sides” of cancer and its treatment are very real and encroaching.  However, at the same time I was saddened and frustrated that so many of us are struggling.  Often silently, because we do not want to appear ungrateful or to upset family, friends and those around us.

From the outset in this cancer experience I have always reminded myself that there are many things which are not in my control, but many which are.  And how I live the cancer deal is one of those in my control.  I would rather be flippant and feisty, and poke fun at cancer than dwell in the doldrums and feel unhappy with my lot.  It just is what it is and I get on with it.  Mostly.

What came across clearly in the comments and conversations prompted by the rant, was the fact that amidst this weariness, we feel compelled to maintain a positive outlook and we feel guilty when we sometimes want to scream and stamp our feet.  Well perhaps not stamp the feet as they hurt too much!  There was a widely shared sense that we do not allow ourselves to have off days, and times of frustration or anguish.

I have been adjusting to these side effects of these meds for some time, and last week reached the point where I lifted my head out of the sand and realised that the pain and discomfort are such that there are many things which physically I can no longer do.  I have had to acknowledge with some resistance, that the break I have booked for next month will be far more physically challenging than I have prepared myself for and that is beyond frustrating.  This is not about inconvenience, this is about debilitating physical effects which are stopping me doing what I have long taken for granted.   For example, one of the favourite parts of my work, visits to our project sites are increasingly difficult – I used to hop on and off of boats, sit on the floor in villages and walk for days in the Himalayas.  Much of that is now too painful, unsafe or, sadly, beyond my capacity now.

That is when I reached that tipping point and this rant took shape.  I feel better for venting, but nothing of course changes the physical deal, the side effects are still there, and I still have difficulty walking. But it is what it is.  I deal with it. I get on with it and adjust as far as possible.  Mostly with a smile, but sometimes, it just gets too much and I weep.  Not often, but sometimes.

These past weeks have been tough ones, and the prospect of more of the same in terms of side effects feels heavy.  But I do work hard to balance this and make the most of what I DO have, and carpe that diem.

Most days I am incredulous that I have been able to realise my dream and ambition to live and work overseas, in such extraordinary places.  I have now been in Asia for 13 years, and am humbled and moved by the incredible experiences I have been through and the wealth of inspiring and amazing people I have known.  I love my life, and I have no significant regrets.  There are of course a heap of things I still would love to do, sitting in my wish bucket.  But, I have so much to be thankful for and if someone called “time” tomorrow, I would not plead for the chance to do that something I have not managed to get round to.

Even as I sit here, looking out onto the lush garden, the wind whispering in the mango tree, frogs croaking as more rains approach, I still have that sense of naïve wonder and fresh enthusiasm at being in such a place.

However, some days it just takes that extra energy and determination to get on with the day to day, and I find that the reserves have run low and it is just out of reach.

It is what it is.

Sometimes even geckoes have to rant.

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Living and dying across cultures

There’s one thing about cancer that is undeniable. And that is that it abruptly confronts you with your mortality. Which is interesting, because many cultures, have so many taboos around death. We don’t talk about it. We remain in denial, about our own deaths, and of those close to us. We use euphemisms when a person dies. We too often avoid the topic. We even hide it from our own minds.

However, when you step over the line in the sand when we learn we have cancer, or if someone close to us is diagnosed, that taboo seems to melt away. Being part of a close cancerhood which includes too many with metastatic cancer, means that the subject of death is always there.

I learned a great deal about death and grieving when my father in law died nine years ago in north eastern India where my husband’s family is from. The family belongs to the “Tamang” ethnic Himalayan hill people and are very devout Buddhists. As a foreigner (and new daughter in law) in such an intense situation there was the potential for a very difficult time. I had no understanding of the rituals, or what would happen and my own cultural block prevented me from asking. This was eased enormously for me, when one of my husband’s aunts took me to one side and passed me “The Tibetan Book of Living and Dying” and pointed me to the chapters on ritual and belief around death.

As well as being enormously helpful and enabling me to understand and engage as appropriate in the rituals, I learned a great deal from that book as well as from being with the family throughout these rituals. I recount this from my memory of that time and what I have retained from the explanations from family and the book which accompanied me throughout. This is my own understanding and I trust that it is accurate, and am happy to be corrected if I err at all.

I am a complete novice in the teachings of Buddhism, so please be gentle with me if I either over-simplify or misconstrue. It is well known that Buddhism is based on the principle of reincarnation. This is where the way we have acted in this life influences and shapes where we head in the next one. As such the process of death is one of the soul passing to the next life and very important. It is critical that the process is carried out properly.

I felt humbled and privileged to be part of this when my father in law died. I found this process enormously respectful and helpful in that it guides the bereaved through a process where they focus on the transition of their loved on in stages and helped me to understand how differently we deal with death in different contexts.

The time of death is believed to be very traumatic for the soul of the one who has died and there is a transition stage known as “bardo” which the soul passes through. It is very important that Buddhist monks guide the departing soul through this process, with rituals known as the “phowa”. This is intended to help the soul understand that they have died and to support them to gradually come to terms with this. Over these early hours and first days following death there is chanting to comfort the soul, and the family say kind things about their lost one, leaving out their favourite foods and drinks to make sure they feel loved and not distressed. The funeral takes place very soon after death, at a place and time identified by the monks.

The 49 days following death are very important in the Buddhist rituals and beliefs, representing seven periods of seven days each. At each seven day point, rituals will be held in the home, Buddhist monks chanting and carrying out the appropriate “puja” to support the soul on their journey towards their next incarnation or next life. At the third seven day period, that is on the 21st day, an important “puja” is held. At this point the soul moves from the stage where they are newly passed, to that where they are preparing for their next incarnation. While in the first 21 days, the soul is believed to be nearby and moving through this “adjustment” phase, after that it is believed that on one of the next seven day points, the soul will pass to the next life, therefore either at the 28th, 35th or the 42nd day.

When the 49th day comes, it is known that the soul has moved on and there is a major day of rituals and puja, with family and friends coming from far and wide to pay respects and to grieve. It is a painful and highly emotional day, for it is on the 49th day, the family and close ones know that their loved one has moved on and they grieve their loss.

loss

Today marks the 49th day since my father’s death.

Post Script

Strangely I dreamed of my father last night, after I had written this.  Strangely, because this is unusual.  I do not dream often of my father, I never have.  I think of him frequently but rarely dream.  Last night, in my dream, he came to visit us in our home.  He was looking so well, was dressed in his usual everyday “countryside smart but casual” clothes and standing in the garden near our door.  I was pleased to see him standing and walking unaided, and out and about as he had been so frail when I last saw him. Memory was clearly blurring with reality.

He didn’t come into the house, but we stood outside and chatted.  Small talk.  Chit chat.  Nothing of substance, but pleasant and lighthearted.

Writing this post and thoughts of the 49 days perhaps prompted my subconscious to form this dream. Or perhaps not?

What if…………

Equity

Dignity

Respect

These are principles which are at my core, which fire my soul more than I care to admit. They underpin all that drives me.

And I am driven by two critical injustices in the world.

There is no cure for cancer.

Access to a good education is out of reach for far too many.

cancer and education

So this very simple statement doing the rounds on Facebook has hit me with breathtaking force and unusually prompted me to stick my head way over the parapet and shout.

What if…………………?

From a Writing Prompt to a spat out Ugly Truth

Sometimes we can be trundling along, just getting on with what we get on with when something stops us abruptly in our tracks.

Two weeks ago, I was preparing for the fortnightly writing group, planning to go along even though I had no writing to share.  I had even confessed to the other writing group folks that I would be a passenger that evening, soaking in their creativity and critiquing in one direction.  Not only had I nothing prepared, I had not had the slightest idea or spark of inspiration. On top of that, I had just returned from Bangkok and the latest round of exhausting tests.  Nope, I was under no illusions that I would be taking anything with me that evening, in the shape of words on a page.

Then I received an email from one of our cosy number, Becky in Burma, in which she mentioned the e-course she was part of and saying that she would probably bring something she had written as one of the exercises.  With her email was an appeal to print a paper copy as that is always easier to share.  Attached to the email was her writing, along with the exercise details.

Of course I had a look at her poem, a heartfelt and powerful piece of writing.  Then I looked at the prompt, and realised that a strange thing was happening.  My mind was whirling and before I knew it, everything around me was strangely disconnected .  Oblivious to my surroundings, I was scribbling away furiously, words pouring out, emotions running amok, struggling to keep back tears.  Within less than fifteen minutes, I put my pen down, dazed, stunned and spent and I looked at what was on the page

Out of absolutely nowhere, and with less than hour to go until our meeting time I suddenly had something to share.  Not a piece of eloquent writing, nor a passage of creative or experimental prose but a page of raw, ugly emotion and truth which had been lurking not so far from the surface, only to be spat out violently.

I have deliberately not edited this in any major way.  I have made a couple of very minor adjustments, but have left it very much as the words formed.  And that is intentional.  The prompt was “What if I were to tell you”?

And clearly I had a lot that I wanted to tell.  Even if I hadn’t realised it.

I posted the words which had crowded in unbidden, as my own very first Poetry Friday. Judging from the many comments and reactions, it seemed to strike a chord. It appears to be not quite a universal truth, but seemingly a widely held one.

As a lay person, I can only speak of how this appears to me. I feel strongly that diagnosis brings what I see as a psychological isolation. The world we enter on hearing the “you have cancer” words frequently forces an unwanted gulf created between those diagnosed and all close and touched by that diagnosis.   And often we want to protect those close to us from the insidious reality.

WikiThe_Scream

 

And it is as difficult to articulate these ugly truths as it is to hear them.

Poetry Friday – “What if I were to tell you……”

What if I were to tell you……

What if I were to tell you, how scared I get.

What if I were to tell you, I think about it every day. At least once.  Though most days, so many times I lose count.

What if I were to tell you, it doesn’t get better.  Not really.  Just different.

What if I were to tell you, it makes me feel a hate so strong it stirs fear in my soul. Fear of my own hatred.

What if I were to tell you, I will never be the same again. I know.

What if I were to tell you, I wake in the night, wet tears reminding me. When I thought I had forgotten.

What if I were to tell you, that every twinge, every hint of pain brings a sweeping new dread.

What if I were to tell you, that hearing it is my fault ignites a fire of anger in my gut.

What if I were to tell you, it is just not as simple as “moving on”.

What if I were to tell you, that long after all around me have forgotten, it is my first waking thought.


What if I were to tell you, that once you hear that word, the mirror shatters.  The life you knew evaporates.  Replaced by a parallel, silent, world.  One built on assumptions.


What if I were to tell you.  And you were to hear me.

And understand.

Balinese lily illuminated by candle light

©  PCR 9 January 2013

Embracing and nurturing 2013 with a three word mantra

Whispers of cloud, streaked pink and gleaming are scattered across Yangon’s sky as the sun creeps over the horizon carrying promise and hope of a new day, of the first day of 2013.  The shrinking flames of the candle flicker at the shrine beside the tree where the Nat spirits live. It is the right time to share the three words which I have selected to encourage and guide me for the coming year …………

Yangon winter sunrise

This is now the fourth year which I have used the “three word” exercise instead of resolutions, to inspire the coming year and to use as a motivation for change.  In fact, I really did not make resolutions before then.  They did not hold much meaning for me.  Of course, there were things I wanted to do or change, but I did not necessarily find that the New Year was timely, or adequate, for that.

When I first saw the three word exercise, in the final hours of 2009, it instantly resonated with me.  The timing was exquisite, coming after my diagnosis and in the midst of chemo.  The words tumbled into my mind easily, singing encouragement and hope.  They formed a mantra which truly enabled me to think forward, and explore what my priorities should be for the coming year as I moved through treatment and into a new unknown.  It was motivational, affirming and inspiring.

And doing this exercise as the year closes has continued to be so. I feel that the three words chart my hopes and priorities for the year, and give me something to focus on. They whisper to me as I continue through the years, and I cherish them. I can tell so much about those years from these words:

2010               Recovery, discovery and laughter

2011               Harmony, vitality and adventure

2012               Resilience, escapade and wonder

It is fascinating to look back and see, through these words, where I was emotionally and physically this time last year.  And to reflect back on how apt they might have been for 2012.

In terms of resilience, oh my goodness that has been apt.  It has been a reminder throughout the year to really focus on emotional and physical wellbeing in order to have reserves to draw on when needed.  And how they have been needed. Serious health issues for me and close family members have led me to sink time and again into the bank of resilience and, I hope, have to a certain extent lessened the struggle.

I am glad I also selected escapade.  This has been a reminder to carpe that diem, and do things in the here and now.  My pulmonary embolism in July, and the fright in October, with the bone scan and raised tumour markers reaffirmed how important it is to do the things I want to and not have regrets.  These do not need to be Big Things, although trips to Hong Kong, Timor Leste, Indonesia, Cambodia and Norway are pretty big in the scheme of escapades!   Just as valid have been those spontaneous and smaller escapades, such as cycling off down unknown paths with my fantabulous bike, or taking the circular railway around Yangon on Christmas Day.

And as for wonder, this lives in my very soul.  I am curious by nature, and my mind wanders off on trails of thought unbidden, leading me to fascinating destinations and passing through unexpected places.  Watching a kingfisher at the poolside took me on an incredible journey of wonder in every sense.  I know I need to hold on to that awe and appreciation in what is around me.  I know that a healthy curiosity is critical to my psychological and emotional wellbeing.  That is the way I rock and roll!

Truly, these words have both guided me, serving as a reminder of priorities and also served to preserve the essence of what turned out to be a tough year for me.

So as the year has drawn to a close, I have been wallowing in word choice again.  Last year I was awash with words and found it quite difficult to choose.   The process took me many days.  This year the words came to me with little searching.  I selected three words almost immediately and although I have tweaked and refined as I have taken time to deliberate and really live with those words, two out of the three are my original choice, and the one changed is very close to my original selection.  And those words for 2013 are:

Focus, treasure and design

Focus

Last year I spent a great deal of time selecting the right three words for the year – “resilience, escapade and wonder”. And of course, just a few days into the New Year, I was already wondering if I had made the right choice. I am a bit of a butterfly and flit from task to task, from idea to new idea and am easily drawn away in unplanned directions. I remember thinking that I needed to focus, to see projects through after the novelty wears off and to set clear goals and objectives as well as commit to seeing a task through.  I particularly like the fact that focus exists as a verb as well as a noun and thus expresses deliberate action as well as something tangible to aim for.  It will remind me that I must focus on my health, on ensuring a balance between work and leisure even in such an exciting, changing and increasingly demanding environment. Ensuring focus will also help to bring clarity, in the literal as well as the figurative sense.  Yes, focus is an important word to set the tone for my year.

Treasure

The second word has been a bit slippery!  My earlier choices included nurture, nourish, cherish and embrace.  With embrace, I wanted to capture that sense of not just accepting whatever comes my way, but moreover to grasp it fully and transform it into something positive and to my advantage.  In my mind is the shadow of my January checks and the checking of the tumour markers.  Whatever the tests and the future holds, I must own it.  I must accept and take control of all that I can. Embrace had appealed in that it conveys a sense of acceptance with the added element of taking control.  I had also been taken by nurture, with its essence of encouraging growth and creation through care.  If I had to select just one word for the world, then it would be nurture.  We need to nurture all around us, our children, our partners, parents and family, our colleagues, friends and acquaintances.  We need to praise and encourage. Then I settled on “cherish” which is a beautiful, rich word. I felt that it conveyed all of the previous aspects, as well as a beautiful sense of when caring for the most precious things to us, protecting and treasuring them.  And that is when “treasure” came rushing in from the wings and swept over cherish gently setting it to the side.  Treasure has been my final selection because it has a wider range of meanings, which include cherish.  I also love the fact that it is also a both a verb and a noun, and that symmetry really calls to me.  In its verbal form, it is very close to cherish, with the added sense that it is something very special. I love treasure as a noun too, because we are surrounded by treasure, in even the most ordinary, everyday entity.  I love to pick fallen frangipani blossom in the morning, and call it morning treasure.  As modern life becomes more sophisticated and complex, maintaining a sense of naivety and wonder is refreshing if not essential to our emotional well being.  I also apply this concept to my physical well-being and know that I must continue to focus on health and activity.  My wonderful morning swim and cycle routine is a treasure indeed.

It is so important to notice the simplest elements in our surroundings and value them.  We really are surrounded by treasures.

monsoon drops captured in leaves

Design

My third word is design.  Again it is a noun and a verb, and again it has a variety of meanings which speak to me for the coming year.  It represents the importance of creativity in my life and serves to remind me to prioritise those creative activities which I so enjoy. I need to ensure that there is space for art, reading, writing and imagining, and that I must ensure balance in my life. Design also conveys a sense of deliberate action, as in the phrase “by design”.  This chimes with me so much.  No matter what challenges are thrown in my way, I must retain control and make wise decisions as I follow the path I choose.  I must ensure that I invest effort and due consideration and don’t just allow myself to be swept along.  Life is not about what happens to us, but how we deal with what happens to us, and we must remember that.

IMG_5059

So these are my three beautiful words, my mantra for 2013 and my guiding star.  The past year has been tough in so many ways, and I hope for a year which is kinder.  I know that the dark shadow of the oncology review is in the first days of 2013. I move towards that, holding tightly onto these words, trusting that no matter what this brings I will be guided through it.

A sinister business partnership? Or a conspiracy?

As I settle back into the swing of things, I know that not far on the horizon is my next round of checks.  For now though, I am still in an upbeat frame of mind following my break and the appointments are far enough ahead not to feel imminent.  So that means that Captain Paranoia is also on a bit of a break.  Although he may not be lurking on my shoulder at the moment, I know he is causing his mischief in many other lives.

With this slight distance I am feeling more rational than can happen at other times regarding the future.  A clear indicator is a glimpse at my web browsing history.  It is immediately obvious that I have not consulted Dr Google for a while.  In fact, not since Dr W laughed at the wirple, back in early July.

This is when I spot a rather interesting connection.  There appears to be some kind of business relationship between Dr Google and Captain P.  A rather sinister one at that.  And they both appear to benefit and feed on each other in this arrangement.

Does it sound familiar?  At the first sign of an ache or pain, appearance of a strange shape or bumpy area, development of a rash or spot, Capt P appears and starts whispering (or shouting) that Houston, we have a problem.  And what do we do?  Too often we run straight to Dr Google who is waiting, grinning malevolently in his 24/7 online consulting room with far too much information, much of it ill organised and not necessarily current.  He overwhelms us with graphic images and what appears to be terrifying confirmation of our worst fears.  Our minds freeze with another round of fears and worries.

We eventually log off.  Sleep is elusive, as the information from Dr Google churns around in our minds.  Capt P takes over another shift and cranks up his efforts to maintain a wearing and ongoing onslaught on our thoughts.

In this welcome space of clarity which I find myself in just now, it is abundantly clear that if Dr Google’s online Diagnostic Service was unavailable, then Capt P would not have such a great hold over us.  Similarly, if Capt P could be kept at bay, we would not be so compelled to consult Dr Google.  The challenge is then how to try and break this cast iron partnership and weaken the power which they wield over us.

In my view, having this knowledge is in itself power.

This week’s Twitter discussion focused on Post Treatment depression and there was a very lively and open sharing of the emotional fragility we have following a cancer diagnosis.  My own view is that while depression is very much a reality for many people post diagnosis, I feel that one thing we all have in common is what I would call a post diagnosis “frame of mind”.  This reflects the fact that we live life differently after diagnosis and we are generally very vulnerable to fear and anxiety.  We are far more prone to worry about our future.  The checks and regular monitoring are massively reassuring – but only if they show nothing worrisome.

This frame of mind is a fertile ground for the sinister partnership of Dr G and the Captain.

We do have tools at our disposal to stand up to the evil duo however.  In particular, we have each other in the online breast cancer community.  We understand each other and respect the harrowing worries that we encounter.  Many a time have I had my hand held across the divide.  We also have a number of reliable sources of internet information and we should ensure that we do not consult Dr Google indiscriminately.  We should turn up at the virtual waiting rooms where we know our consultation will be fair and credible, such as the Breast Cancer sites and not that terrifying Google images search engine!

So what do we have then?  We have an evil duo who are in all likelihood working in cahoots – Dr Google and Captain Paranoia.  They are supported by an arsenal of information and detail which we cannot begin to interpret without a very smart medical head.  To counteract this we have a wide reaching and sensitive community who “get it”, and understand our fears and anxieties.  We also have our “real life” Doctors – our oncologists and our surgeons for example.  They not only know their stuff, they know us, and mostly can guide us through the minefield of distressing and baffling details dropped in front of us.  We usually only see them at our checks and they are subjected to the collection of questions which we have been saving up in anticipation of our reunion with them.  Often we are waylaid by unexpected blood results of other questions and realise in the days following our appointment that we still have unanswered questions.  And Capt P just loves to latch on to these questions and twist them around in our minds.  He refers us directly to Dr Google……..

We need to try and break this cycle, fed by the Capt P and Dr G alliance.  I know that is far easier said than done.  Dr Google is far too accessible and Capt P ensures that his visitations are as distant as possible from our real life support.  We must therefore make a concerted effort to resist Dr Google.  Capt P will then be weakened in his efforts to derail our thinking.  We have helpful guidelines, such as the 2 week rule (if a pain, ache or suspicious bump lasts for 2 weeks it needs to be taken to a Doctor).  We have our online support.  Oh, did I already mention that?  I guess that out of the sinister partnership, Capt P could possibly be credited with having a modicum of use.  He keeps us alert.  It is critical for us to be aware of our bodies and any changes that could be significant.  But to go any further than that sees him as a trouble maker who needs to be kept in his place.

I hope that this exposure of this intimidating duo can prompt us to do one thing.  To enable us to take firm control of our situations and enable us to strike a balance of being vigilant, sensitive and proactive without being obsessive.

Knowledge is indeed power.  So listen here Dr Google and Captain P – you guys are  RUMBLED!!!

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!

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.