World Cancer Day – debunk those myths!

These” World Days” more often than not, catch me by surprise.  Surely it is only a few weeks ago since it was World Cancer Day?  Apparently not. Today, Februay 4 is indeed World Cancer Day.

The World Cancer Day website tells us:

World Cancer Day 2014 (4 February 2014) will build on the success of last year’s campaign, by again focusing on Target 5 of the World Cancer Declaration: Reduce stigma and dispel myths about cancer, under the tagline “Debunk the myths”.

World Cancer Day is a chance to raise our collective voices in the name of improving general knowledge around cancer and dismissing misconceptions about the disease. From a global level, we are focusing our messaging on the four myths above. In addition to being in-line with our global advocacy goals, these overarching myths leave a lot of flexibility for members, partners and supporters to adapt and expand on for their own needs.

If we are going to focus on myths around cancer I am not sure where I would start.  So I am opting for quick and easy.  And consistent.  Living in this part of the world it is critical to be able to share accurate information. Beliefs and traditions are deeply held and must be respected while attempting to debunk myths surround cancer.

I have therefore chosen to highlight some of the points from an earlier post, which looks at inequity and the challenges of cancer in a developing context. In this post I noted 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……..

……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

Fans with message in Myanmar

My plea on this World Cancer Day, is that we take a step back and reflect on those inequities, and acknowledge the very different places we all stand.  Those myths vary according to where we are and there are many unspoken, little-known myths which we must first understand.

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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.

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…………………?

Westering home

So, after 24 days living out of my suitcase, changing plans and generally following a nomadic lifestyle, I spent Monday attempting to cram all of my belongings into my bags in an attempt to shrink them into the allowable weight allowance for my return to Yangon.  This involved a few naughty tricks, such as planting some of my heavier documents and materials in beside laundry in the expectation that this would make them lighter, if not totally weight free.  The heavier papers I squeezed into a large carry on bag, and still I had a number of books which refused to fit in any of these bags.  My task had been complicated by the fact that I had some weighty things for family in India, and of course having had to cancel that visit, I would be taking them to Yangon instead of Darjeeling.  I try to travel fairly light, but with the different purposes of the various parts of my 24 day shufty I inevitably had quite a collection of goods.  I had so much that the usual compulsory Bangkok shopping items such as Thai curry paste, various cheeses, Boots shampoos and shower gels and other essentials had to be sacrificed (as in not bought, rather than offered up to some airport gods).  Somehow that did not appear to have applied to a few books, which I had managed to accidentally buy.  Interesting these laws of nature!

My flight was early so I had a taxi ordered for 5.45 am.  I was generally faffing around the room at 5.10 am, juggling with the various permutations of where to stash away the various bits and pieces which still had to be stashed when the phone rang.    My taxi was waiting for me!  Now I am happy to be on the early side, but this was not helpful!  Still, with the last final touches to the art composition that was my luggage, including an impromptu piece which was formed by stuffing a number of books into a carrier bag, I closed the door and left what had unexpectedly been my home for the past days.

I approached the check in counter rather apprehensively with all my bags, and handed over ticket and passport along with a big smile. I waved my bulging carry on bag at the ground staff and asked if it was ok for carry on.  (Quite what I would have done if she has said no, I am not quite sure – though part of my keenness in being early is to be able to regroup in the event of something like that happening).  She gave it a cursory nod and asked if it had any liquids in it.  Being completely dry it was apparently fine for carry on.  Along with the carrier bag of books and my handbag.  And the fleece and pashmina that I was carrying.  You get the picture!  It was not much fun going through security, taking out my laptop and placing all of these into the trays.  The staff were quite bemused to see me fill four trays!  Still, I was though and able to head to the airline lounge.

Bangkok Airways has a policy (I am not sure if it is new or not, but it is certainly most welcome) of providing lounge access to all passengers not just those with posh tickets.  So I was very happy to head to the lounge and its free internet and free flow tea.

I was especially happy because the timing of my fight, and the access to internet meant that I could join the #BCSM (Breast Cancer Social Media) Twitter discussion for half an hour before I had to go to the departure gate.  I particularly wanted to join this discussion too…………..

And that leads me towards a very different topic, one which will be the subject of its own post very soon and one which is very much on my mind as I am back home.  This week’s discussion focused on renewal and featured my friend Terri of A Fresh Chapter.  Terri spoke about her “Adventure of Hope” which she has embarked upon, following a period volunteering in Africa after her cancer treatment finished. Please read the transcript – it is very powerful.  In the discussion, she highlighted how cancer is seen in developing countries, and this is something very close to my own heart, having been diagnosed in Asia.  In fact, I have had a number of preliminary conversations about my own possible venture into “doing something” in this part of the world.  And to give you a flavour of why I feel so strongly, I am going to share a Tweet from Terri, which hit me with a force that was almost physical.  She tweeted:

“We can’t imagine the stigma around cancer in the developing world. Women would rather get HIV than cancer in Africa.”

This does not underplay the enormity and fear of HIV (which is immense) but rather shows just the level of fear, taboo and stigma around cancer and the challenges in accessing good standards of information, treatment and care.

And this is why I will be thinking and talking a whole lot more about this in coming days and weeks now that I am back home.