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.

Afterwords

I was blown away by the response that my eggshells rant produced last week.  That s why I have been a bit on the quiet side – I have been reading your thoughts and replies, listening and thinking.

Rather than begin another rant and repeat the same sort of things I want to just pick out some key messages that have come through for me from everything I have read and heard over the past week.

  • Thank heavens for the internet!   We are so not alone and what a dialogue we can have across the globe.
  • It is just as hard not knowing what to say as it is hearing what you don’t want to hear!
  • As much as we are united by our cancer diagnosis and share many common reactions, we are all different and the things which makes us prickle differ just as much as we differ.
  • Cancer invades the lives of those close to people who are diagnosed, as powerfully as those themselves diagnosed.  (I found this post very thought provoking – it goes further and suggests that those around us are also cancer survivors).

And a parting thought.  There are indeed silver linings and blessings which have come out of my cancer diagnosis, and I am truly thankful and appreciative of these.  However, it does not make me hate cancer any the less!

Eggshells

Now that the latest round of checks is behind me, I think I have an apology to make.  Around the time of these appointments I get so incredibly stressed. I feel as I am walking on eggshells, waiting for just the slightest pressure which might cause me to fall again into a great abyss.

However, I think that is probably nothing compared with the eggshells that people around me are having to walk on!

I confess to being supergrumpy and ultra jumpy.  I apologise wholeheartedly, but I have to say I do not think there is that much that I can do about it.  I have already said that I am grateful for these checks, but that does not make them any the less scary.

I know that it is really difficult for people to know what to say to me before these checks.  And I have had the audacity to moan ungratefully here about some of the encouraging and supportive comments I have received.  For example, I have found it difficult when people tell me not to worry, that it will be all right.  I have these checks because it is possible that it will NOT be all right.  Wishing me good luck is of course appreciated, but even that is tricky as it feels like tempting fate.

In fact, it is probably impossible to find something to say which I find suitable before these checks.  The root of the problem, however, is not so much what people say to me, but the fact that I am in this situation at all.  Indeed the problem goes right back to October 2009 when I heard those life changing words confirming that I had cancer.  At that moment of diagnosis, a sense of “comfort” is taken away.  All possibilities that there might be a non sinister explanation disappears and the thing we dread is a reality.  I certainly remember feeling a sense of disbelief which fostered attempts at denial.  This CANNOT be happening to me? I can not have cancer.  This can not be true.  In the days and weeks immediately following diagnosis and the start of treatment, I remember waking in the mornings, and for an instant had forgotten that I had cancer.  Then it would hit me, that sudden and overwhelming mix of grief, fear and disbelief crashing around me as realisation  dawned.  It reminds me somewhat of bereavement when you have moments where you can briefly forget that a loved one has gone, only to experience that shock and sadness anew alongside the awareness.

That is why I react so strongly to words of support.  Supportive words feel like platitudes, and we become supersensitive to all manner of language and expression.  I am trying to protect myself and build a barrier in case I hear words I do not want to hear at the checks.

It is reassuring to know I am not alone here.  I have been following a number of debates on Breast Cancer blogs and discussion sites devoted to the question of how we perceive ourselves.  We are given labels such as fighters, survivors, patients, brave warriors to name but a few, and we all feel passionately about these terms.  And we often disagree amongst ourselves.

Many people feel that some terms can almost be offensive.  For example, the very analogy of fighting comes in for a lot of criticism as it implies that those who are taken by cancer have somehow ”lost”, perhaps not fighting hard enough.  It implies that advance of our cancer is somehow related to not being strong enough or allowing it to take over.

I even find that the language I use and choose changes too, as does the way I feel about it.  One day I might react strongly to being described as being a fighter, while other days it might feel flattering to me!  It clearly struck a chord with me at some point, as the moniker of my blog bears witness.

Similarly, the role of attitude is credited with our prognosis.  I do have a positive attitude and approach to this wretched disease.  I like to take the proverbial **** out of cancer.  Well that what it has done to me, so fair’s fair!  It has involved me taking control over elements of my life which I feel can have a bearing on my health.  Being proactive about swimming daily, for example, or cracking inappropriate jokes at the expense of cancer.  However, I am not under any illusions that being positive will make a significant difference to whether or not the cancer beast makes a comeback.  The reality is that as much as cancer treatment has advanced, we know that it does not always succeed in containing or eradicating the cancer because it is sneaky and clever and some forms do not respond to the treatments.  Of course being positive and strong helps us in how we deal with our illness and treatment.  It can make a huge difference in a day.  However, it is most definitely NOT the same as “beating” cancer.

I personally found cancer treatment a struggle, though not necessarily a battle.  The distinction makes sense to me!  I found the treatment hard going, physically, emotionally and it without doubt took a toll.  As far as the cancer in my body was concerned though, it brought very little in the way of sign or symptom let alone something significant which I felt I was battling.  It was more like hosting a battle where one adversary was silent and invisible and the other only too evident.

If that is not contradictory and complex enough, I have to say a few words about the phenomenon  of ”celebrity cancer” which seems to behave differently to ordinary person cancer in the way it is reported in the media.  The indiscriminate nature of the illness and gruelling treatment and side effects of course belie that of course, which adds to the sensitivity around this.  I recently  read a number of news reports of another celebrity who has been undergoing treatment and happily this been successful.  Of course, that is the best news and what we all want to hear.  However, despite myself, I found that I was becoming highly irritated and even offended by the report when it referred to the cancer being “beaten”.  What particularly upset me was that the person concerned had previously been diagnosed at stage 4.  Now I just want to stress that I am quite delighted that this person’s cancer has responded to treatment and can totally identify with the relief and happiness in their family.  What I find difficult, however, is the implication that Stage 4 cancer can be “cured” rather than arrested and managed.  I don’t understand how stage 4 cancer can be “beaten”.  I know it can be managed, as a chronic illness and some of the terror of a stage 4 diagnosis is dissipated perhaps.  But how can it be beaten?  How can it be banished?  And what does that say to families who have lost a loved one?

There are two points to come out of this rant.  Firstly, this is based on reports rather than hard facts.  There is often a tenuous relationship between the two.  Sometimes not even as much as a tenuous link.  In all likelihood, therefore, my reaction is not even based on the facts.  Secondly, can you see the eggshells?  My goodness, how much did I overreact to this?

Whether or not it is an overreaction, it illustrates very clearly how sensitive this whole cancer business makes us.  Hearing that you have cancer brings a fear, confronting us with our mortality.  So it doesn’t really matter what language we use, or what people say to us because we now have this constant presence – the threat of cancer, which has been forced into our lives making us sensitive and vulnerable.

The irony is that I have such overwhelming support and I lean on that enormously.  All around me (in every sense) people are supporting me through this.  And how do I respond?  By being as prickly as a hedgehog having a very bad hair day.

No wonder folks feel they are walking on eggshells.  Cancer is making us walk on eggshells.