Skin deep

Dear people

This is a plea to myself as much as it is to others. This is an appeal to each of us, to pause and think before we judge others, especially on appearance.

I know what you think when you see me, whether for the first time or as a longer acquaintance.  I can read it in your eyes.  I see the belief that I look the way I do because I do not care about myself, I am gluttonous and lazy. I know that look which betrays pity and blame combined. Which cuts into my soul.

I know that I have not worn my years kindly.  But I do not think you know just how much I struggle with that, every time I look in a mirror and each time I see myself reflected in the eyes of judging strangers.

I do not want to have to tell in advance, that I know how it seems. As if I live a life of sloth.  But I yearn to challenge that judgement, and preface a conversation by saying just how hard I push against the forces which shape me.

I will give you an example. I move increasingly awkwardly. Femara is a drug which decreases the probability of my cancer recurring or progressing. For which I am thankful.  How can I not be?  Despite the accumulating side effects which conspire to make my mobility increasingly constrained and painful.  I push myself to get up and move about, despite the pain because I know it helps a little and that inactivity is an enemy. Despite that pain when I rise to my feet and the jarring pain in the first steps, which gradually reduces to an ache and awkwardness.  But I can tell by your looks, that you think my bulkiness is causing this lumbering gait.

I hear comments on my weight and suggestions that I should walk a little. I know that the intent is not unkind, but still I fight back tears. I hate my defensive tone when I try to explain gently that I have cycled five kilometres that very morning, as I do most mornings.  That I have swum half a mile, as I do most mornings. That I am probably fitter than I have ever been since my teenage years. The irony slaps me, knocking me sideways. I know you don’t really believe me.  I know that because, if you see me by chance one morning on my bicycle or swimming, your expression is of surprise.

I can no long walk freely.  My toes have retained that numbness of peripheral neuropathy from chemotherapy. I am frightened of falling.  I stumble even in the house and earlier this year had one bad fall. Those numb toes caught on a paving stone, slightly upturned and I fell heavily on both knees. Those tender, already painful knees.  My confidence has been dashed, and my love of walking is a memory as I pick tentative, cautious and painful steps.

Dear people, I had no idea that there were so many long term effects from treatment which has probably saved, and at the very least significantly prolonged my life. When I learned that my thyroid function had been annihilated by chemotherapy my initial reaction was one of vindication.  Here is a major reason why I struggle with my weight despite being more active and physically fit than I have ever been.  It is not sloth or gluttony.  Zero thyroid function is a very clear medical reason behind stubborn extra pounds. Every morning before my day begins, even before I put on my swimwear as the sky slowly lightens, I have to take synthetic thyroid.  Every day I take this, and will for the rest of my life.  Any hope that this artificial medication would re-shape me was however dashed as the months after this bonus diagnosis and new medication slipped by without any sign of weight loss.  An hour of exercise in the morning maintains a fairly steady or even mildly gaining weight.  Any reduction in activity results in rapid weight gain.  Which does not reduce no matter how active I am.  This is sickening and frustrating.

It is human to judge and to make assumptions. We are wrapped in our social and cultural baggage which nurtures beliefs deep within us. It is also human to smart when we are on the receiving end of those suppositions.judgementI know that I should accept the way I look.  Even my doctor has told me I am doing everything right and that I should try not to be so hard on myself.  That is one part of the question.  The other part is how not to take it so much to heart when others are unintentionally hard on me.

shoesAnd that is the one I can’t crack.  I can rationalise the comments and looks, and can attempt to reassure myself that I am not who I appear to be.  But I can’t stop it hurting.  I can’t prevent involuntary sickening twist-in-the-gut  reaction when yet another person remarks. That lingering sense of sorrow and shame which descends on my spirit. The futility of defending myself, knowing that it just does not appear credible, and minds are already made up.

Dear people, you do not know how much I hesitated to write this. How bare my soul feels putting these words on the page.  How exposed and vulnerable this makes me feel.  How sensitive and susceptible to more judgement as a result of disclosing my innermost anxieties and insecurities.  How uncomfortable about such a self- indulgent outpouring.

We do not know what innermost struggles there are within each individual, hidden by smiles and a seeming lightness of the spirit. Painting a smile and crafting gentle words while the soul writhes in pain takes enormous effort.

do not judge me

To paraphrase a well known saying – let us aim to be kind to others , for we cannot know what private turmoil there is within each one of us.

Downtown Yangon

As I boarded my flight to Bangkok last week, my colleague paused as we made our way down the aisle towards our seats.  She had spotted a familiar face, U Thant Myint U, well known author (including The River of Lost Footsteps) and Chairman of the Yangon Heritage Trust. We were able to exchange a few words before taking our seats.

I had already selected the new background image, of the old Burma Bombay Press Building, but nevertheless that encounter probably played a part in my drive to share some of the many images I have of Yangon’s heritage and downtown area. This is an area which infuses energy and delight every time I visit. I have put together a gallery of images on the sister blog.  This is a vivid, chaotic mix reflecting downtown life with its colours and vitality amidst modern and heritage architecture.

The corner of Strand Road

The corner of Strand Road

And a few words from U Thant Myint-U himself

Do call by Feisty Blue Gecko – in images: Glimpses of life and heritage in Yangon’s Downtown for an introduction to this fascinating part of town.

On the move yet again……

It has been another week of packing, unpacking, checking in, checking out, locking and unlocking the little travel bag which drew such a short straw when it was selected by me, and flying through soupy clouds.  I have been offline most of the past three days while participating in a conference in Bangkok.  I am returning to Yangon with a head full of ideas, a file full of papers and a wallet bulging with visiting cards.  I have connected and re-connected with like minds and am wrapped in a blanket of enthusiasm and motivation.

As I move along, feet hardly touching the ground I realise that it is many weeks since I have changed my background picture.  That says such a great deal about how much the image from the Malaysian jungle resonated with me and how long I wanted to continue to soak in those healing images and memories.  But now it is time for a change, and the image I am drawn to is one I took some time ago, in fact probably around the time that I attended the first conference on this topic, weeks after finishing my heavy treatment and when I connected with Kirsty for the first time.

I love wandering around downtown Yangon amidst the living heritage architecture. I remember seeing this building, where the Bombay Burma Press was housed and being fascinated by it and taking many photographs. It just has to be shared.

downtownyangon

It is a glorious building and conveys the sentiment I want to share for the coming days and weeks as a background.

Welcome again to my world. 🙂

With all due respect

October on the breast cancer blogosphere has often been tense and as we step gently into November I feel a release of that tension. There has been much discussion about pink and whether pink and the pink ribbon are appropriate, exploitative and ineffective. A great deal of focus has been on moving conversations forward towards action and education and away from awareness. Awareness is yesterday. Awareness is unneeded. Awareness misses the point. Many bloggers who are usually very active and vocal took a recess during October. Others used the opportunity to shout. There has been a great deal of articulate, passionate and thought-provoking debate.

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I struggle with these discussions. Not because I disagree with the concern that pink campaigns focus on profit and an unbalanced view of breast cancer. I find it completely inappropriate that certain products claim to support breast cancer initiatives and often a tiny proportion of the proceeds or profits is used for breast cancer work. Nor do I struggle because I find some campaigns distasteful – after all a certain shocking image even prompted me to leap off my comfortable fence and rant!

No, my issues with the feisty debate stems from the fact that I have a particular perspective on breast cancer, awareness and equity from my place on the planet. I see and hear, and try to understand, the significant different levels of awareness and the very different concerns which people have in my part of the world. I struggle with the fact that I had access to excellent care and treatment and a reasonable level of understanding of breast cancer yet a woman I might sit next to in the course of my life and work here has a very different level of awareness, considerable traditional taboos and for whom access to care and treatment is not easy. The discussions in the wider blogosphere are relevant and critical. But they often do not have relevance from where I am standing.

This is something which I have been struggling with since I stepped over the line in the sand into breast cancer world. Inequity in any form ruffles my feathers and my personal and professional life are driven by this passionate need to play even a tiny role to cause any tiny shift in this balance. But apart from the blog, it is difficult to see what I can really do in my neck of the woods. So recently, I learned of an initiative underway to bring women and men together, raise awareness and understanding about breast cancer and of course I leapt at the opportunity. There are a very small number of expat/international women I know here who have been through diagnosis and treatment and who are currently here so we came together to look at two things. Firstly, how we could support and contribute to the efforts of the local group, and secondly how we could connect as a small group ourselves.

We contacted the key folks involved in the initiative here and asked if we could support. We know that our understanding and experience is different, but we also know that we have all heard the same or similar words. We have all felt that fear when confronted with our mortality and the dread of aggressive, difficult treatments. As individuals, of course our experience is different but this is compounded considerably by our backgrounds.

So, it is complicated. What follows is my understanding and reflection, and I know it is more shallow and superficial than I would like. But it is a start in this broader attempt to convey just how different our cancer experiences are, yet how much we have in common.  No matter where we are on the planet. And how critical it is to respect these, no matter how much or little we understand.

Our cultural reference points bring differing levels of understanding wherever we are. I quickly learned that it was even more complex and subtle here than I had imagined. Many people were hesitant or uncomfortable to talk openly about their cancer, or even to be identified as having been diagnosed. Gentle conversations gradually helped us, outsiders, to understand that there is a significant stigma associated with cancer. Belief grounded in karma means that a cancer diagnosis seems to bring with it a judgement that this is a punishment for a wrongdoing either earlier in this life or a previous one. There also are important issues over privacy and sharing private information, similar to the situation which Kirsty discussed in her post from Timor-Leste where the woman she spoke of was unable to raise her concerns with a doctor due to shyness.

So it has been a path which we have been treading along gingerly, trying to understand unspoken concerns and beliefs in solidarity.

Our initial aim has been to support the group in organising and promoting a Pink Ribbon Awareness Day which was being planned. And that is the event which was held last Saturday and which I promised to share details and reflections.

breast cancer awareness invitationIn preparation for the day a few women worked together to prepare a leaflet in Myanmar language, sound in information yet sensitive and appropriate to the context. We took care of the practical and logistical arrangements such as venue, refreshments, shade, seating and translation. We prepared for our own roles on the day and did our best to spread the word.

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Although rainy season should be nearing its end our planning had an added edge with the promise of thunderstorms and the day did indeed start under a very moody sky.

The message which the group were anxious to convey was to dispel the utter fear of breast cancer which causes many not to seek medical advice. The message that a diagnosis of cancer is not necessarily a life sentence and that early detection is critical. I found myself struggling to a certain extent, knowing the importance of not reinforcing the belief that early detection guarantees that the cancer will be “cured”. But the discussions soon showed how complicated this is in the global context and the importance of that very early detection message here. For various reasons, potential breast cancer symptoms are often presented at an advanced stage when prognosis is much poorer. Generally, if detection were earlier here, then many lives would be saved. Many, many women and men do not know many of the symptoms of breast cancer. Many are afraid to know – treatment is not easily accessible or affordable. Many prefer to see if symptoms disappear on their own, and take traditional medication. By the time it is clear that the symptom is not going away, the disease could be much more advanced. Many are afraid of the treatment itself, or do not trust it and unsure of where to get reliable information. So it is complicated indeed.

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Goodie bags with leaflets and info

The group decided to have a “programme” which would provide information, encouragement and the opportunity to ask questions as well as learning how to do a self examination in a private space after the main discussions.  We provided a “goodie bag” with information leaflets and fans and ribbons were provided for each participant.

After a short introduction, a panel was introduced of four women who shared their experiences and answered questions put by a facilitator. The four women comprised two Myanmar women, one Australian and one Scot. It is probably not hard to guess who the Scot might have been!

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We each described our own experience, focusing on how we felt when we discovered the sign that we might have cancer, what we did, what was our treatment and how did we cope. We were also asked to say how much we knew about cancer before our diagnosis. I was asked if I had had treatment options, and who decided what my treatment would be. We were also asked who broke the news to us that we had cancer – was it family or the doctor? It seemed that the Myanmar participants shared their concerns with friends or family some time before seeking medical help on their advice. One spoke of the difficulty in finding an oncologist and when she did, was not comfortable to share her concerns with a male doctor and it took further time to seek a female oncologist.

After we had spoken and answered individual questions, a gentleman sitting in the front row was invited to speak. We very quickly learned that he had been diagnosed with breast cancer and he shared his account with enormous openness and detail. He described finding blood on his shirt one day and when he sought medical advice, was highly surprised to find that this was breast cancer. From my place in the panel, I could not see him clearly, but there was no mistaking what was happening when he started to unbutton his shirt so that people could see his scar.

Following our own stories, there was the opportunity to ask questions. Pieces of paper had been distributed so that people could write their questions down and not feel embarrassed or shy in front of the large group. The panel was joined by one of the international doctors who gave up his Saturday afternoon to provide accurate and up to date information and answer questions from a medical perspective.

The questions themselves show how important the cultural context, the levels of understanding is and how different to many places. I share a few of the questions from memory:

• Are you more likely to have breast cancer if your breasts are very large or very small?
• What were your eating and sleeping habits before you had cancer?
• What is meant by stages and grades of cancer?
• Is it more likely to have cancer in the left than the right breast?
• What counselling support did you have to help you after diagnosis?
• How long does chemotherapy last and how much does it cost?
• What different treatments are there and how much do they cost?
• Are there options other than surgery for a tumour?

Thus, as the discussion ensued I realised that the messages of early detection and awareness of signs and symptoms are critical in this context as many women will seek support and information from friends and family long before consulting a doctor. Thus many present very late and prognosis is much poorer. It is so important to understand and respect the differing places we are all coming from.

Fans with message in Myanmar

I know that there is in many places pink and pink ribbon fatigue. I know that there are calls that the pink ribbon has outlived its use. It is evident that pinkness masks the ugly reality that is breast cancer. I understand these but from where I am I do believe that there is an important place for a unifying pink ribbon. It is sad that the ribbon has been abused and exploited in many places. It is critical to recognise and respect the reality that the pink ribbon excludes the most important group of the breast cancer community – those with metastatic cancer. But it is complicated. The organisers of the event on Saturday were more comfortable working on the symbolic pink by making ribbons, and setting up flowers and providing fans with a message of vigilance. They were far less comfortable sharing personal details or being identified as having been diagnosed. And as outsiders to the context, we must respect that.

Cancer cells do not care what our citizenship is, they are programmed to destroy. The major surgery often required to eradicate tumours is physically disfiguring on any body and psychologically destructive on any mind. Chemotherapy does not care if our hair is fair or dark, long or short, curly or straight, thick or fine – it will still fall as a result of many chemo regimes. Cancer is a psychological diagnosis as much as a physical one, no matter where on the planet we are.breast cancer awareness yangon 2013 7

And wherever or whoever we are we must respect and recognise how much we have in common and how much differs.