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.

Bridging the Timor Gap: Dreams of equity for women with breast cancer in the Southeast Asia region’s newest nation.

A Guest Post by Kirsty Sword Gusmão

I am delighted to share this insightful and inspirational feature by Kirsty Sword Gusmão. To set the scene, I wrote about the incredible synchronicity which connected us in “A small, inequitable world”.  I am hopeful that this will be the first of many contributions from Kirsty.

Kirsty was born in Melbourne, Australia and grew up in Melbourne and Bendigo. She attended Melbourne University where she completed a Bachelor of Arts (Honours), majoring in Indonesian and Italian, and a Diploma of Education.

In 1991, after working as an Administrative Secretary with the Overseas Service Bureau (Australian Volunteers International), she joined the Refugee Studies Program at Oxford University as Assistant to the Development Coordinator. During 1991, she travelled to East Timor as the Researcher/Interpreter for the Yorkshire Television documentary film (In Cold Blood: The massacre of East Timor) on political and social developments in the territory.

From 1992 to 1996, she lived and worked as a teacher and human rights campaigner in Jakarta, Indonesia. It was during these years that her work for the East Timorese independence cause intensified and brought her into contact with the independence leader, Xanana Gusmão, who was serving a 20-year sentence in a Jakarta jail and whom she married in July, 2000.

She has lived in East Timor since October 1999 and is the founder and chairwoman of the Alola Foundation which she established in 2001 to address the needs of East Timorese women and their families.

Kirsty was appointed as Goodwill Ambassador for Education in October 2007. She is Chair of the Timor-Leste National Commission for UNESCO and also heads up the National Commission for Education. She is passionate about the issue of language policy and language of instruction in schools in Timor-Leste and is presently spear-heading initiatives aimed at giving a role to the country’s some 30 local languages in the education system.

Portrait1

Bridging the Timor Gap: Dreams of equity for women with breast cancer in the Southeast Asia region’s newest nation.  

By Kirsty Sword Gusmão

Last month I watched, along with millions of viewers around the world, the images of the Duchess of Cambridge emerging radiant from a London hospital with a healthy newborn baby cradled in her arms. In the lead up to the birth, the big question on the lips of the thousands of commentators and journalists related not to whether or not mother and baby might live through the labour, but rather what the future King’s name would be. And yet, the reality of childbirth for the world’s poor and underprivileged mothers, including those in my adopted homeland of Timor-Leste, is that giving birth is one of the most dangerous undertakings a woman can embark upon. At the time of independence in 2002, only some 10% of women opted to have their babies in a health facility, the vast majority giving birth at home in the presence of family members or, at best, a traditional birth attendant. As a result, rates of infant and maternal mortality are amongst the highest in the region, and whilst there have been vast improvements in health facilities and services ever since, women continue to die from haemorrhaging and other post-natal complications virtually unheard of in the developed world.

My thoughts turn to the case of another high profile celebrity whose health and body have been in the news in recent times. Angelina Jolie announced a couple of months ago that she had had a double mastectomy as a means of ensuring she did not succumb to breast cancer for which she has a genetic predisposition. The question of the costs involved in being tested to determine the extent of a woman’s vulnerability was raised in articles and commentary around the world, and the issue of equity of access to care and treatment leapt to the fore in my thoughts as I pondered the situation of women in my country of Timor-Leste.

It is not known how many East Timorese women die each year from women’s cancers, including breast cancer. The country’s fledgling health service has not yet honed its data collection systems and methods, and since the poorest and most vulnerable citizens live in remote locations without easy access to health and other government facilities, many rely on traditional medicine and the intervention of “matan dok” or witch-doctors to heal them when ill. Anecdotal evidence at least suggests that the vast majority of cancer sufferers present to western-trained doctors only when traditional remedies fail and, hence, when their cancer is advanced and too often beyond cure. I can surmise that, as with childbirth, women experiencing symptoms of breast or ovarian cancer, feel too shy to speak with a physician about a condition involving private parts of their anatomy, and hence they suffer in silence until it is too late.

In May this year, my husband, Prime Minister Xanana Gusmão, visited me in Melbourne where I have been receiving treatment for breast cancer diagnosed in December 2012. I have had the very good fortune to have access to one of the region’s most impressive and professional cancer hospitals in the city of my birth, Melbourne. The Peter MacCallum Cancer Centre is where I have received surgery and chemotherapy for the hormone-receptor positive lobular cancer detected by my GP at the time of a Christmas visit late last year.

In the course of his May visit, my husband shared with me the story of a woman he encountered during a short stay a month earlier in the town of Ainaro in the mountains some 70 kilometres south of Dili. He was in Ainaro to share details of the government’s decentralisation plan and to highlight the important role of local government in supporting the country’s burgeoning democracy. Having spent many years directing the resistance from the mountains surrounding Ainaro, Xanana’s visit provided many locals with a rare and long-awaited opportunity to reconnect with their leader and to share with him some of their most pressing needs and aspirations.

Amongst the citizens waiting patiently for an audience with the Prime Minister was a middle-aged woman and judge from Suai called Francisca (name changed to protect her privacy.). She had made the long journey from the southern coastal town, taking leave from her job at the Suai district court, with the intention of raising her health concerns with my husband. To begin with, she spoke of a stomach ailment for which she had received treatment at the Guido Valadares National Hospital in Dili. She was distressed that the medication had caused her to lose her hair and teeth. The only food she could eat was rice porridge. When the Prime Minister, suspecting that Francisca was not disclosing the full story of her health status, pressed her to provide more detail, she revealed that she was also experiencing swelling and hardness in her breasts, with an unpleasant smelling liquid issuing from her nipples. Fresh from a visit to Melbourne to visit me following my lumpectomy, Xanana was perhaps a little more mindful of the signs and possibility of breast cancer than he otherwise would be, and hence he quizzed Francisca as to whether she had considered that she might have breast cancer. Her response was a downcast look and a shrug. Upon his return to Dili, my husband made arrangements for Francisca to travel to Bali and to be given a medical assessment at a private hospital there. Some months later, Francisca sought my husband out again, this time at his office in the imposing Government Palace in Dili. Xanana was rather dismayed to learn that she had failed to make mention to the Balinese doctors of her concerns about her breasts, possibly as a result of shyness. Francisca revealed to the Prime Minister that she had been taking traditional medicines made available by members of her family in Suai, and that she was confident that there had been an improvement in the condition of one of her breasts. Subsequently my husband got in touch with Timor-Leste’s Consul-General in Bali and requested that a consultation with a breast cancer specialist be organised for Francisca. The results of this consultation are unknown as yet, nevertheless it would appear likely that Francisca has suffered for some years with undiagnosed breast cancer.

According to World Health Organisation statistics, breast cancer deaths in Timor-Leste account for less than 1% of all deaths caused by disease, with tuberculosis, malaria and infectious diseases rating significantly higher as potential killers. It is not surprising then that establishment of cancer treatment facilities and services are not on the top of the priority list of the Ministry of Health at the present time. Nevertheless, as a direct result of receiving my own treatment at the highly regarded Peter MacCallum Cancer Centre in Melbourne, the Board and staff of the Centre are keen to establish a collaborative partnership with Timor-Leste in the months and years to come. My women’s NGO, the Alola Foundation, will lead the charge in the all-important health promotion work that needs to be done to raise awareness of the importance of breast care and breast self-examination leading to early detection.

It is my hope that with the vast experience and technical expertise of Peter Mac made available to our own fledgling health services, an important step may have been taken in ensuring that future generations of East Timorese women like Francisca can be diagnosed early, treated and cured of cancer in their own country and therefore surrounded by the love and support of friends and family.

Kirsty Sword Gusmão
7 August, 2013

Kirsty and her family are preparing to return to Dili in the next few days, following her own breast cancer treatment, taking with her these plans and dreams.  These are early days.  Steadily, possibly slowly, but surely we are chipping away at these inequities.

Thank you, Kirsty, for such an informative, and critical insight into the situation for women in Timor Leste.

It’s a small, inequitable world.

If I had to pinpoint only one issue which I am passionate about, and which is my driving force, I would have no hesitation.  Equity.  This is a theme which comes up time and time again here, and for as long as there is inequity, I will keep shouting.

So, attending a conference in Bangkok in November 2010 on the role of language in meeting the Millennium Development Goals, was a Big Deal.  It was a Big Deal because there was continuous recognition that the MDGs were unlikely to be met by the target of 2015.  Sure, there had been massive gains and children in India and China for example, had seen considerably increased enrolment rates in schools.  However, relying on numbers masked the fact that in many contexts, the actual proportion of children was actually decreasing overall. The poorest and most disadvantaged of children were consistently marginalised and excluded from development.  I was fired up by continuous reference to the post MDG debate and that it would need to focus on equity rather than numbers.  Exactly!

This conference was a Big Deal for another reason.  November 2010 marked 13 months from my diagnosis.  I had just had my first annual Big Check and was newly NED (No Evidence of Disease).  My hair was slowly growing back, albeit curly and grey. I had even graduated to using shampoo!  This would be my very visit to Bangkok since diagnosis, which was not for medical reasons.  This was for professional reasons, and I was seeing myself in a place which a few weeks and months earlier I could not imagine.  I was even presenting a paper.

The conference came at a critical time for me, regaining my personal and professional confidence, and a belief in my own future.  The topic of the conference was both inspiring and pertinent to me at all levels. And it attracted an incredible group of committed and experienced experts.

I was especially awe-inspired by one speaker, Kirsty Sword-Gusmao, and found myself sitting on the edge of my seat, nodding at her presentation. She was introduced as Timor Leste’s first First Lady, an Australian woman married to the first President of Timor Leste when it gained independence. Her husband, Xanana Gusmao, is the current Prime Minister of Timor Leste.

Moreover, Kirsty is a dedicated advocate on equity in many topics in Timor Leste and the founder and Director of the Alola Foundation.  She was speaking at the conference in relation to education and language. She spoke powerfully and persuasively, with her heart and her head.  At the end of her presentation, I joined a line of “gushers” to tell her how much I had been moved and inspired by her words and work.

And I thought the story would end there.  But in fact, just over two years later, the story picked up again.  You may remember that I visited Timor Leste in February of 2012 as a guest of my former Doctor who had moved there from her posting in Yangon. I didn’t meet Kirsty then in my 48 hours in the fourth newest country in the world, but I felt a real connection with this beautiful country and the inspirational woman who I had listened to, rapt, in Bangkok.

Stunning Timor Leste

The story in fact took a new turn in January this year when I received an email from my Doctor friend, asking me if I would mind being contacted by a patient of hers who had just been diagnosed with breast cancer.  She mentioned that she had pointed her patient in the direction of my blog.  I was horribly saddened to learn that it was Kirsty who had been diagnosed, but somewhat flattered to learn that Kirsty had asked if she could make contact with me.  A flurry of email exchanges ensued and we have been in regular communication since then.  Through each conversation, we find more and more shared interests, passions and issues, on personal and professional levels.

If you recall my rant on equity prompted by the Angelina Jolie discussion, you may have noticed that I quoted Kirsty, as a friend from Timor Leste.  I drew attention to her saying that although the treatment for cancer is hideous, at least she had access to care.  She went on to highlight that a woman from a village in Timor Leste would have few options and would likely have to wait her day.

KSG interview

In that post, I alluded to the fact that there was a “story” behind the way Kirsty and I connected, and that we wanted to tell it one day.

That day is today.  And it serves as an important “back story” to the next post on Feisty Blue Gecko.  Since the first emails we exchanged, a number of commonalities were revealed.  That passion about equity, belief in supporting children having a fair chance, advocating on behalf of those whose voice is not heard, living in an adopted land, a similar determined outlook and humour.  And of course, breast cancer.

After the Angelina Jolie post, Kirsty and I spoke about jointly working to prepare a post for the blog about the reality for women diagnosed with breast cancer in a developing country.   How delighted am I, to be able to tell you that Kirsty has written a highly insightful account from Timor Leste, which will be posted on Feisty Blue Gecko over the weekend. 

What a small world we live in.  And what astonishing connections form from the least expected sources.