Off on a tandem!

You can see from my blogroll on the right that I follow a large number of blogs, most of them Breast Cancer related.  Keeping up to date with the diverse and rich postings might take time but never fails to move me. I am humbled and inspired, I laugh and cry, I am inspired and challenged.  Through this I have “met” some phenomenal women (and a few men too, of course, but this domain is very much dominated by women).  Everyone has a powerful story to tell and there is an incredible level of spirit, intellect, snark, feist and debate.

When I first started this blog, it was an outlet to help me process the extreme stuff I was being faced with, and focused mainly on the immediate.  While I was in the thick of treatment in the months following diagnosis it formed a detailed account of diagnosis and treatment in my rather unusual setting.  Blogging was a lifeline.

Over a year later and in a different space, when I step back and look at it, I find that the blog has a different character too.  Now I find there are still some updates, but my ramblings are more reflective and often trying to make sense of life lived through the Breast Cancer lens.  I find that many of my thoughts are inspired by the rich material there is in each other’s blog posts. I love the variety in our posts, in our approaches and styles, reflecting how different we all are and our experience is.  I have special “thinking time” when I let my mind develop some of the thoughts which are stirred.  I love to let my thoughts develop during my daily swim, though it is a bit difficult then to note down any nuggets which I really want to remember, so I find myself repeating and mentally refining these ideas as I plough up and down the pool, mixing ideas with the number of lengths swum.  I also love that time after I put my book down at night and switch off the bedside light before I fall asleep for thinking creatively.  That is also a challenge in terms of somehow recording these ideas as they often disappear into a dream world rather too quickly!

So recently, when I read about Terri’s Big Dream, my mind started firing with a barrage of random ideas and thoughts.  Terri dreams, (which I believe means plans and will find a way of doing) of establishing a non-profit to help other cancer survivors volunteer internationally.  A vey exciting project, and one which we will connect about to chat and perhaps brainstorm a bit.

My mind however, went careering off on its own “tandem” ( as I love to say 😉 ) It made me think of the very different experiences which women have, depending on where they happen to be.  There can be quite a variation within countries, even where there are policies and guidelines such as the NICE guidelines in the UK. Living in Asia has given me an acute kind of better sweet cancer experience.  I personally have had an incredibly sophisticated treatment and care plan, with state of the art medical facilities and practice, the latest medication and no waiting time for surgery and results.

Very many are not nearly so fortunate though.  Facilities, diagnostics, pathology can be limited and medical specialists not easily accessible.  The costs of care can be completely out of the reach of many.  There but for the grace of God, go I indeed.

There is another aspect though which I find fascinating given the level of sophistication to the debate and dialogue regarding Breast Cancer demonstrating that many women are empowered and informed with regard to their treatment and care.  I regularly stand in awe of many of my co-canceristas when I read complex analytical discussions, thought provoking and carefully researched posts, powerful personal accounts and challenging articles.  There is a very strong Breast Cancer lobby driven by articulate, intelligent and dedicated people, passionate about the plethora of issues.  There is a strong challenge to the pink marketing and lack of progress in research and debate.  There is a drive to move beyond awareness raising and address the lack of research, particularly into metastatic cancer.  This is critical, there is no question of it.  Too many are affected by metastatic disease.  Cancer is still stealing so many.

However, I would like to just stick my neck out a little, and share my thoughts about awareness raising from a different perspective.

After I was diagnosed, I returned to Yangon and buckled down for the long ride of treatment.  I was blown away by the amount of support and help from friends and colleagues here. Then one day I received a phone call from a colleague.  She was very upset about my diagnosis and wanted to send her love and prayers.  It was incredibly touching, and bear in mind I had only been in this new job (and country) just over three months.  Then she told me that everyone was really surprised that I had been diagnosed with breast cancer.  Apparently, it is believed to be a “spinster” disease which only (or usually) affects women who have never married or had children here.  I was totally taken aback and responded quite strongly.  Many traditional beliefs have their origins in in a remote truth and I can kind of see where that might have roots, after all apparently having children at a younger age and breast feed your babies are seen to be factors which relate to reduced likelihood of developing breast cancer.  But I was shocked that the belief was so strong and I immediately vowed to raise awareness as widely and appropriately as I could do in my local setting.

To me this is a reminder that there is and clear and pressing need for awareness raising in a number of contexts, and this is not limited to the example I have shared here.

Nor does this mean that the question of research and particularly understanding and treating metastasis should come later.  It is not an “either/or” question.  There is no doubt that there is an urgent need to shift emphasis in the more advanced contexts, while seeking contextually appropriate ways of raising awareness where this is clearly needed.  My aim here is to convey the message that there is enormous diversity in levels of awareness and debate and I for one need to be reminded of that and the role I can play in it.

I am intrigued to hear how Terri’s big dream develops and while I know that the direction that my mind took does not reflect how the dream will come to life, it just shows how much we inspire each other in every sense.

 

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16 thoughts on “Off on a tandem!

  1. When I was diagnosed with cancer and concurrently found to be BRCA2 positive, my mother asked if that meant my daughter (17 years old) needed to get the new cancer vaccine. She thought she was informed, but the two are not anywhere related. BRAC2 passed from my father to me (and not my brother), and the new vaccine which treats cancer that arises out of a sexually transmitted disease.

    I often find people that don’t understand that BRCA genes involve males too. I don’t know that there is any way to reach people informing them on a subject that many still don’t talk about and few pay attention to – until it involves themselves or their loved ones.

    And yet, I have the same thoughts and dreams as you.

    Thanks for the thought provoking posts and wonderful writing.

    Dianne Duffy

    • Thanks for your comment Diane – and for sharing this insight about BRCA. I also learned from your response.

      I think you have hit on a key point – no matter where we are, it is a topic we don’t really pay attention to until it reaches us.

      Thanks so much for your insights and encouragement.

      P 🙂

  2. Wow, that IS a wake-up call if I ever read one! I can’t believe cultures still exist that are ignorant of the type of women who get breast cancer. I’m sure that “light-bulb” experience awakened in you a fresh passion to get out the truth about breast cancer to every tribe and tongue. Lives are in the balance. Thanks so much for this beautiful post about a people totally foreign to me.
    XOXO,
    Jan

    • Yes, Jan – it really stopped me in my tracks. It’s a really tricky and sensitive one too, as it is critical to be respectful of cultural traditions and practices. and indeed we often have much to learn from them. They are deep rooted and often bound in truth, and held as much by well educated, professional and smart women as by those who have less access to information. I think it applies in many different contexts, not just in developing countries too……….. It is critical to be sensitive, appropriate and respectful. Not an easy call.

      I think Diane’s point (above) is also true and applies across the globe, that too often we don’t pay attention to these things until we are ourselves touched by them.

      Yes, you are right in that it has spurred me to try and promote awareness as far as appropriate.
      Thanks so much.
      P 🙂 xx

  3. This is an excellent point, one that should not be overlooked. Those of us who blog & tweet represent a small fraction of women with breast cancer. We are an educated and highly resources demographic. Thank you for this reminder.

    I love your descriptions of your swim time. I feel the same when I run!

    XO

    • Oh thanks CB – you have put it beautifully.

      Yes, those swim/run times are so precious. Almost meditative, though running with a notepad is probably as tricky as swimming with one 😉

      Thanks P 🙂 xx

  4. where I am breast cancer is still sometimes thought of as a western disease despite the fact that it actually affects all races throughout the population.often people don’t even think about these assumptions until they actually say them out loud.
    I was once taken aback ,years before I had breast cancer,by a soya bean vendor who shouted at me from his stall “buy tofu,good for your breast cancer”as though all ” western” women have this disease!
    another local one is that “western “women have big breasts because they drink a lot of milk(i’m allergic to it and haven’t taken any for eighteen years)
    thank you for your blog and the way you are helping to spread knowledge about this disease,it takes time to reach people and inform them meanwhile we have to be patient and understanding

    • Thank you SO much for adding this perspective from where you are. Not that far, but not so near me either – very interesting examples of assumptions and beliefs, often so deep rooted.

      You are absolutely right – patience and understanding are crucial.
      Thanks H
      P 🙂 xx

  5. I love that you went off on a “tandem” and I love what you have to say about raising awareness. Thank you for “sticking your neck out” and reminding us that the world is big and not every person or every culture experience cancer in the same way. I look forward to skyping sometime in September and brainstorming ideas for this big hairy audacious dream. I know your insight will be incredibly valuable. Have a great week!

    • Thanks for your comment and support Terri, and most of all for the inspiration which set me off on the “tandem” 😉 – you are so right, the world is such a huge place with such rich diversity and we are all so different, so many variables to influence the cancer experience.

      I am also looking forward enormously to our skype chat. In the meantime, have a wonderful time and enjoy the company of your visitors and nurture that dream.

  6. I too stand in awe of those articulate, intelligent and well informed women we both know who fearlessly tells it like it is in the blogosphere, and many times I wish I could be more like them in my own writings – but then I have also come to value the different things we all bring to the blogosphere. I get something different from everyone – I love to read your perspective of life in Asia – to me an exotic and far flung world which you bring to life and Terri’s beautiful, thoughtful, compassionate and caring posts resonate deeply with me and that’s just to name two of my favourite bloggesses! So let’s celebrate our wonderful diversity and continue to learn and share our experiences with each other – I feel proud to be a part of such a diverse and wonderful BC Blogging Sisterhood!

    • Thanks Marie – yes I often feel that I am not entitled to the “feisty” label when next to some of these amazing women. But then it is lucky a gecko has sticky feet as that enables me to stick nicely on the fence without worrying about falling off 😉 Like you say, I think it is about finding the space we feel fits us for our expression, and valuing the diversity and variety of writing and thought on the blogosphere. There is indeed so much to celebrate, and I am humbled and proud to be part of the sisterhood.

      Thank you so much for your support and encouragement.

      P 🙂

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  10. Thanks for sharing with us all. Have you heard of the Breast Cancer M.A.P. Project? It’s a research initiative launched by the Cancer Support Community’s Cancer Survivorship Research and Training Institute. The aim is to understand and address the emotional and social needs that accompany a breast cancer diagnosis. Through joining our registry, women are offered a unique opportunity to help guide and inform research directed at ameliorating the breast cancer experience.

    Please consider joining us as part of a national movement of breast cancer survivors, and helping us propel our research forward in ultimately improving the lives of millions touched by cancer.

    Best wishes,
    Natalie
    http://www.BreastCancerRegistry.com

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