A meeting of like minds and hearts

I often wonder, if this were ten years ago or so, just how different life living overseas and with breast cancer would be. It is very hard to imagine.

A refrain of mine is the one around the depth of meaning in the friendships we develop online (or mainly online), particularly prompted by the breast cancer experience.  My connection with Kirsty Sword Gusmao (who wrote such an insightful guest post here recently on Timor-Leste) is a clear example of how such a connection can develop, especially given that we share so much more than our breast cancer experience, as I described earlier.  We have both settled in countries very different to the ones where we were born, married to men from very different cultures to the ones of our own origins and we are passionate about equity and rights especially in the fields of women, children and the most disadvantaged and vulnerable people.

Kirsty and I met fleetingly three years ago long before her cancer diagnosis which was to be the catalyst which put us in contact. We have been eager to connect properly, in “real life” as we know we have such a great deal to talk about. That opportunity presented itself this when it was confirmed that Kirsty’s husband, Xanana Gusmao, would be leading a delegation visiting South East Asian nations – including a short and packed visit to Myanmar!

As soon as Kirsty arrived, we started sending messages and were able to speak on the phone.  It is so funny to hear a real voice where there has only really been a voice in your head prior to that.  We don’t realise how much we create a voice in our minds, that part which is largely missing in internet communication.  It is so reminiscent of meeting someone for the first time when you have no idea how they look, particularly in those pre “Facebook and Google image search” days.

Kirsty arrives in YangonDespite a very busy schedule around the country and little time here in Yangon, Kirsty generously found a space for us to meet up.  And as anticipated, we managed to pack an array of conversations around an incredibly diversity of topics.

a long awaited meet up

I can’t thank Kirsty and her husband enough for sharing precious free time with me in such a full schedule. It was somewhat surreal to be in the company of people whose stories are so well known in the world. Moreso, though it was humbling, inspiring and an enormous privilege.

What an incredible world we live in, that a combination of factors, including our doctor, the internet, breast cancer and a passion for equity enable such a meeting for like minds and hearts.  We are now scheming how, when and where we can continue these conversations we have started.

Advertisements

Equity – Moving the conversation forward

We must keep the conversation alive.   Kirsty’s post on equity and Timor-Leste attracted several hundred views from 30 countries around the world.  I trust that the thoughts she has shared will take a hold in our minds and badger us.  That inequity.  Our own positions of relative comfort.  There but for the ……

I can feel something shifting, slowly.  Kirsty spoke about plans for a collaboration between the Peter MacCallum Cancer Centre and Timor-Leste.  A critical start.  I can promise updates on how that takes shape.

I can also share some ripples from Myanmar.  I recently learned that a group of women and men affected by breast cancer had come together in Yangon.  Such news really warms my heart, even if it is based on the contradiction of diagnosis.  The group is establishing a Foundation for those who have been touched by a breast cancer diagnosis.  The aims will be wide and ambitious.  They have to be.  And connected with that, the tiny number of (international) women I know here who have been through breast cancer are also coming together to see how we can contribute to the aims of the Foundation as well as connecting as we continue our paths following diagnosis.

northern star

There is a shift.  A start. Conversations are picking up, building on will. There is a long way to go, but a journey is underway.  And I feel far from alone as I pick my steps along this path.

From Jaffna to mastectomy. And beyond.

I was staying in a little guest house in Jaffna, the capital of the northerly province of Sri Lanka.  It was June 2008 and the atmosphere was somewhat tense at that time, in the final months of the conflict.  The little guest house was a real haven, and we were well looked after by M, a lively character who managed the place.  She made sure the rooms were clean, and produced beautifully fresh and flavoursome Jaffna cuisine.  Although the curfew did not apply to the early evening (if my memory serves me well), we tended to stay in and chat with fellow guests, usually also from the humanitarian sector.  There were only five rooms, so it really was a small and cosy setting.  One evening we were chatting as usual, and our host was in and out of the conversation as she worked away. Now, again if memory serves me right, the conversation took an unexpected turn, along these lines when our host asked:

Have you heard of Angelina Jolie?”

The general response was one of confusion, and silence followed by tentative nods- and you could see the puzzlement in faces, wondering where on earth this conversation had come from and where it could possibly be heading.

She’s my friend”, M told us proudly.  Our responses were probably not very serious but it seems M was used to this.  She pulled out photographs, and sure enough, there was M, pictured, beaming as she stood with Angelina Jolie.

The penny dropped as we realised and vaguely remembered that Angelina Jolie had visited Jaffna in 2003 in her role as UNHCR Goodwill Ambassador. Of course she had stayed at the same guest house as I had, being one of not many options. Her visit was warmly remembered, and it speaks volumes that she had apparently maintained contact with M.

UN Ambassador Angelina Jolie's visit to Jaffna 2003

UN Ambassador Angelina Jolie’s visit to Jaffna 2003

Of course, our chests swelled a little with pride, at having something in common with Angelina Jolie.

Now it is not hard to see where this discussion is going.  Oh yes indeed, I am finally joining the conversation on Angelina Jolie’s news this week.

Here is something else we have in common. I now also share the fact that we have both been faced with breast cancer and taken the decision to have a mastectomy in addition to sleeping in the same guest house and enjoying M’s food in Jaffna.

Unsurprisingly, the article in which Angelina Jolie shared her news has sparked off incredible interest and discussion. She has, in my view, selflessly decided to use her celebrity status to highlight the issue of the genetic mutation which gives her personally a high chance of breast cancer.  She has shared private and intimate details about mastectomy in order to raise awareness and understanding about the genetic mutation and options.  The article has prompted all manner of discussions both in support of and critical of her decision and how she has shared it. The Breast Cancer Blogosphere has been crammed with these discussions and my goodness have I learned a lot from these.  Angelina Jolie’s article has prompted debate around the issues of choice, genetic testing, access to options and the very complex issue of the patenting and ownership of genetic material which is taken for testing. Yep, patenting and ownership – read this excellent article and have your eyes opened!

For me though, the most valuable message to draw from her slant was the reassurance to women that they too can go through a procedure which strikes fear into our hearts. I have enormous respect for her decision to share very publicly, something which is so intimate and personal.  Thank you, Angelina.

One argument put forward has been that the issue of genetic testing is a bit of a red herring in that such a small number of breast cancers are due to the genetic mutation.  That is probably true.  But the simple question in my mind is – how on earth can we know that if so few can access testing? Guidelines vary according to health provider, insurer etc, but are generally based on criteria drawn from family history, ethnicity and age at diagnosis for example.  My own daughter can not currently be tested unless I am tested positive (according to current NHS guidelines, I understand, but that could perhaps change if the Jolie effect strengthens. Currently though, I would have to self fund to test and my surgeon does not believe that I hit enough of the triggers to warrant this.  That may change, let’s see.

What I do want to discuss, though is something which is raised in Angelina’s article and which comes up in many of the ensuing discussions.  And which I see as a gap in the discourse relating to an issue which I am passionately and deeply troubled by.

The article quotes

Breast cancer alone kills some 458,000 people each year, according to the World Health Organization, mainly in low- and middle-income countries. It has got to be a priority to ensure that more women can access gene testing and lifesaving preventive treatment, whatever their means and background, wherever they live. The cost of testing for BRCA1 and BRCA2, at more than $3,000 in the United States, remains an obstacle for many women.”

The points which scream at me refer to the fact that deaths are “mainly in low and middle income countries” followed soon after by the information that the cost of testing for BRCA1 and BRCA2 is  “more than $3,000 in the United States”.  Here I go again.  This is my refrain about equity, or rather inequity, especially in so many developing countries.  Quite simply, there are more deaths in places where people have least means.  If genetic testing is accessible either through public Health Services, Insurance cover or private means then there is a choice.  It seems to me, that for a significant number, particularly in developing countries, these opportunities just do not exist or are way out of reach.

The same point was put beautifully by my friend (that is another wonderful story, which I would love to share another day) who is undergoing treatment right now for her breast cancer.  She was interviewed recently and discussed her treatment.

KSG interview

“’It’s a hideous process, but there’s not a day goes by I don’t count my lucky stars,” she says.

Were she a simple villager in East Timor, with no means to travel abroad for treatment, ”you’d basically just wait your day to die”.

That refers to treatment.  Survival. Not to screening, and certainly not to genetic profiling and possible options to reduce risk.

In my view, there critical point underneath this discussion was brought to the fore in this article. I do quote out of context slightly, in that the author is highlighting that the options are not only available to celebrities, and encouraging patients to be informed and ensure that they get the best surgical options available to them. But underlying assumption sweeps aside the fact that the fact that far too many are not so privileged.  The article states that

Angelina Jolie’s remarkable story should bring hope to breast cancer patients and those at risk of developing the illness.

Absolutely.

However, it continues:

Procedures like Jolie’s are available to all women.

I’m sorry?  Available to all women?

This.

Is.

Simply.

Not.

So.

Please, please remember that the world is a diverse place. Please do not forget that many women (and men) live in very differing contexts and situations.  What many of us can take for granted, is way out of reach for many, many others.  For example:

  • Reliable information is not available to all women, especially where traditional beliefs are important but not necessarily medically based.

  • Access to health screening is not available to all women.

  • Mammograms are not available to all women.

  • Diagnostic procedures are not available to all women.

  • Expensive cancer surgery and treatments are not available to all women.

And I have not even mentioned genetic testing………………

I am not a celebrity nor personality in any way.  But I am privileged and I know it.  I have access to information, support, medical treatment and ongoing medical care. I value and cherish this and am inordinately thankful.

And while I can, I will shout out loudly, with the unheard voices of those who do not have these.

forgetmenot

Lest we ever forget.

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…………………?