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.

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Where there is no pink pandemic

As we enter the month of Breast Cancer Awareness it is true that Pinktober might be upon many of us.  However, I would urge us to remember that the world is not an equal place.  I ask myself whether it is a good thing or not that the pink pandemic has not reached all corners of the globe?

I am keenly aware that I am physically and intellectually very distant from the sophisticated marketing and campaigning of the Breast Cancer Awareness Month.  I have yet to see any pink products with my own eyes, and with the exception of pink ribbon postering in the hospital I go to, I could actually remain unaware of the Pink Month.  Except for my online life that is.  I find it a very confusing and conflicting period, both emotionally and intellectually.  I follow the debates.  And I humbly appreciate and value the efforts family and friends put towards many cancer related causes, in my support.

One of the concerns I frequently hear is that there we are past the stage of raising awareness, everyone knows about breast cancer, and that the focus must change.  I respect and acknowledge that, and believe it is true I many contexts.  However, as I have mentioned here, there are still many places where accurate and fair awareness raising are essential.  There are indeed contexts where breast cancer is misunderstood and where the causes and treatments are limited.  I have already described my reaction when my colleague expressed her surprise that I had been diagnosed because I am not a spinster.  Now it is easy to be shocked at this but let’s put things in context a bit.  Cancer is (a far as I understand) a disease which flourishes in the developing world.  Childbirth at an early age and breast feedingare acknowledged to be mitigating risk factors in Breast Cancer vulnerability.  So in a situation where there are few touches of the modern world it would not be surprising to learn that the disease probably appears to be seen more among women who have neither borne children and therefore not breast fed.  In traditional settings, these women would tend to be unmarried. Hence, a spinster disease.

This has prompted me to try and put together some awareness raising activities locally, so that I can at least highlight signs which should be recognised and which should prompt women to seek medical advice.  In this context my starting point will be to talk with women.  Initially women only, though I will seek ways which are appropriate and respectful of raising awareness with men too at some point.  At the very least, I hope that it means that Breast Cancer will be talked about openly in a fairly private and comfortable setting. We will explore together what breast cancer means, starting from what people already know and believe. I expect we will also talk about what kind of treatment options exist.

In order to try and understand the situation more clearly in preparation for this, I have been talking with friends about their experience and understanding of breast cancer.  I have had some fascinating discussions and learned a great deal about beliefs about the cause of breast cancer, who is “susceptible” and treatment options for people diagnosed with breast cancer, and for that matter other cancers too.  I was not prepared for the response, and do bear in mind that I have been in Asia for 11 years in working in some very untouched areas.  From what I have learned, cancer was not openly talked about and the term “cancer” not used until more recent times.  Even today, I hear a number of references to “that kind of illness” and “the serious disease”. When it comes to treatment, traditional remedies are what people trust and feel comfortable with, and indeed are often the only option available.  When exploring this together, I am sure I will learn a great deal more about breast cancer in settings which are off the pink radar.

However, this brings a real dilemma.  By raising awareness and highlighting signs which women should be aware of., this leads on to a greater demand for diagnostics and treatment.  However, high standards of medical treatment and facilities are not readily accessible to many.  Furthermore the costs of treatment is also beyond the reach of a great number of people.  So what does empowerment and awareness achieve if options are very limited, and someone is not able to access the treatment indicated?  Is awareness raising in fact more dangerous because it puts people in a situation in which they are worse off and more afraid?

There is no easy answer to this.  The ideal would be that hand in hand with awareness raising would be a move towards broad access to treatment and care.  I guess that is what we have to strive for.

So while the debate rages around pinkification, I have the aim of sharing a side which does not generally feature in the discussions.  The reality that for many women around the world the need for awareness and treatment is urgent and for whom the debate around pink October has no immediate relevance.