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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15 thoughts on “With all due respect

  1. I think that the pink awareness programs are completely overdone in North America and Northern Europe. I have always believed that there are many other parts of the world which would benefit from education. Unfortunately the pink awareness campaigns are designed for profit by corporations. It would be better if they could shift to cancer education campaigns in parts of the world which do not have the access to education and treatment.

  2. And I forgot to say thank you to you and the rest of your group for organizing this event, clearly demonstrating the need for education and helping the attendees.

    • Thank you for your comments – it is such an irony, isn’t it, that despite the extremes there are few examples of useful and appropriate education programmes and campaigns. That these campaigns and even the pink ribbon can alienate those who are most affected is such a contradiction.

      Thanks for your support – we have a great deal of work ahead 🙂 And of course, there will be lots more on this subject here on the blog.

  3. I was fighting against a stage IV cancer and i won, lucky my husband who helped me all the time.I think it is very important that family support to win, because i was very weak;really helped me participate in one group of victims of cancer, so my mood improved, also helped me a adviser of advisercancer-diseases.com.I recomended not surrender, because sometimes the first treatment does not work as me, and change doctors if it is necessary.Read positive thinking books gave me more energy.During my cancer,i changed my diet,now i eat vegetarian organic food(now i not eat meat).I think is a set of things that help me.
    Xoxo
    Wendy

  4. Thank you for sharing the story of the work your group is doing and the cultural factors that influenced so strongly the way in which breast cancer awareness and education was approached in your event. It seems likely that breast cancer education efforts that are sensitive in this way to the culture of the participants could make a difference in many, many places.

    • Thanks to you for your supportive words. We have a long path ahead, and a great deal to learn. It is a fine balance trying to move the conversation forwards while being sensitive. I am hoping that there will be many updates 🙂

  5. Hi Philippa, thank you for sharing your experience with us. It was interesting to see how pink was used in your event and totally understandable as to why it was chosen. If the ribbon were to really, truly represent breast cancer (any kind, all types, all stages), then it could be a very inclusive and supportive symbol. That is often how I want to see it, even if awareness of metastatic is so very limited.

    In any case, it sounds like you were doing a great job supporting your community and helping those with questions. Cheers to you and the organizers. ~Catherine

    • Thank you Catherine – our Myanmar friends were very clear that the pink ribbon was a unifying symbol and as you say, it is sad that this is not the case. And it is so true that pink and mets do not sit comfortably together. I wish I knew the answer. For me the questions were so revealing – we forget how much we differ in the basic information available to us. Big hugs to you xox

  6. I am so thankful you are able to provide awareness in your own community, Philippa. To get the perspective of a culture so foreign to our Western one is much needed to jar our complacent society into true action. I applaud what you do as well as your writing and photography. Carry on! xo

    • Thank you so much for listening and understanding – this validates why I shout! And thank you for your kind words about my ramblings and random pics 🙂 There are many more I am sure 🙂 xox

  7. dear philippa,

    you did a wonderful job in this post, pointing out so many cultural differences and exploring the need for a careful and compassionate sensitivity in order to successfully begin the kind of awareness and education needed where you are on the planet. these issues are definitely not a “one-size fits all”. especially when one considers the list of questions that are being asked. I wonder about the pink fans – do you think they might resonate more than the ribbon? I thought they were a very clever idea! I wish you and the group you are working with much inspiration and insight, and am so looking forward to hearing how you proceed.

    much love and light, XOXOX

    karen

    • Thank you for your kind and encouraging words – I really appreciate them. It is been so complicated and we have all learned a lot from working together on this. The fans are very much a Myanmar thing – the fact we can get them printed with messages shows how popular they are. They keep the sun off, flies away and of course just a little breeze on the very hot days of which there are many!

      There will hopefully be many updates .

      Love and light to you too, am thinking of you. xox

  8. Excellent, thought-provoking points, Philippa. I was one of those people who chose to turn away from Pinktober, as in the US, we are inundated with pink. But you make an insightful point: it is complicated. Awareness can save lives, especially in areas of the world where people aren’t openly discussing breast cancer. The event you helped put together sounds so wonderful.

    • Thank you so much, Beth. This was quite a tough post to write as I wanted to respect and understand the limitations and misuse of the pink and ribbon, while showing that there are contexts where it does have a place. I believe that the problem is not with the pink ribbon itself but in its exploitation, however the attention is on the ribbon. The overriding message I wanted to convey that it is complicated and rather than judge, I try to respect. We will be meeting in a week or so to see how to take this forward so there will be updates for sure.

  9. Pingback: Weekly Round Up | Journeying Beyond Breast Cancer

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