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.

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Different shades of pink

When it comes to Breast Cancer Awareness Month, I find myself confused and conflicted. I have been kind of sitting this one out this year.  I read and take on board the apparent hi-jacking of the ribbon, particularly in the US and the contradiction in the small amounts of proceeds going to breast cancer work, in particular research into metastatic breast cancer.  At the same time, my heart is incredibly warmed by close family members supporting pink ribbon ventures and adventures. I hear the arguments that in some contexts, there is inappropriate marketing and commercialisation.  I believe it is not an “either/or” situation or awareness versus research.  Until Breast cancer touches us, we tend to close our senses to awareness.  Added to that, it seems that there are huge swathes of populations the messages
do not reach or choices are not there.  Equally, there is a glaring lack of research around metastatic breast cancer (MBC).  I am woefully uninformed about research into MBC, particularly over here, so am not going to even attempt to discuss that.

But I want to focus on where I am, right here, right now and share some thoughts and observations, purely on awareness and its connection to pink. There is already more than enough for me to say about basic and real awareness.

I flagged down a taxi outside the hospital in Bangkok on Day One of the checks, to head back to the hotel.  The taxi was bright pink.  Now actually that is not unusual as many taxis in Thailand are pink.  Some are green and yellow and a small number are blue, orange or other colours.   But the majority, to my eye seem to be either pink or green and yellow. However, what struck me particularly about this taxi, was the upholstery which was a bright shocking pink!  That is far less usual.

Having just drawn away from the hospital doors and their Pink October campaign, and being surrounded in the blogosphere by a range of views and discussions around pink and the pink ribbon, my mind was swirling in confusions and associations.

Pink is a very auspicious colour in Thailand, and I would be very surprised if the first meaning associated with the colour is anywhere near breast cancer.  People wearing pink t-shirts can be seen in swathes in Thailand,  as a sign of support and respect. So in Thailand, pink already has differing significance and there is a wealth of pink in sight.   In terms of Breast Cancer Awareness, there is a level of pink ribbon presence, but I have yet to see inappropriate or broad sweeping pink ribbon marketing.

Then something interesting happened.  In my bonus days in Bangkok, for the extra scans and work, I escaped for some numbing, only-looking shopping time to one of the big malls. My eye was caught by a card display, with lovely geckos on the front.  The cards were printed in brightly coloured, good quality paper.  Each set came in a grouping of five colours.  Of course, including blue.  So one of the five cards in the set was the most beautiful image of a group of very feisty blue geckos.

I had to have a set. I took them down and examined them, with their lively colours, heaps of attitude and little gems to accentuate the artwork. And then I saw this:

“Supporting Breast Cancer Outreach Projects”

You have to remember that I live in an environment where there is little “pink ribbon” marketing, so to see this was incredibly warming.  Not to mention, uncannily pertinent! This does not appear to me as commercialisation or exploitation of the  pink ribbon.  Jaab is a fair trade company and a proportion of the proceeds go towards a variety of Breast Cancer Projects.  In particular, there is a focus on outreach work for women in marginalised or difficult circumstances.

My views on pink ribbon marketing are no secret, and not exactly mainstream.  More like slipstream.  I am keenly aware that the marketing seems to exist in extremes around the globe.  Here, awareness seems to be much more tightly linked to the pink ribbon that it does in more commercialised contexts.

After the checks in Bangkok, of course, I returned to Yangon.  I have already written a fair bit about the void there is here in terms of awareness and marketing.  It is not my intent to repeat what I have said earlier, but rather to add to this. I ran a short session earlier this month with a group here and showed the pink ribbon as part of the introductory discussion. Not ONE single person knew its association / designation of breast cancer. Not one. I knew awareness was in a different place, but this really shook me, and shows just how incredibly inconsistently the pink ribbon is known and used around the world.  We went on to discuss some basic awareness including signs to have checked, and again talked explored beliefs about causes and risk.  Many believe that wearing old and tight underwear is a cause, and that it is a disease which mainly affects unmarried women.  For me real awareness is just that. REAL awareness.  And it is so important here, for example, where much is very different, yet the disease impacts cruelly and indiscriminately.

My plea is simple.  All I ask is that we remember that awareness varies enormously, as does the use of the pink ribbon and merchandising.  There are so many different shades of pink.  And perhaps we can learn about different ways of balancing marketing with awareness raising from unexpected sources.

The Annual Hunt – in detail!

The day started really well, apart from the tiredness and inability to sleep very well, of course, but that is entirely natural.  I don’t know of any fellow breast cancer (or any cancer) folks who are not terrified when it comes to these checks.  I know I have been approaching mine with gritted teeth, with dread and fear but without any question that I was extremely grateful for the thorough checking.

I duly fasted all night in readiness for the blood letting, and was awake long before the alarm awoke.  This resulted in being at the hospital at 7.45 am, well before the first tests were due to start.  This gave me time to pose in front of the big Pink Ribbon Tree in the hospital foyer, which seemed like an appropriate way to start the day’s proceedings.

There was a lot more evidence of Breast Cancer Awareness Month than back in Yangon, and the hospital was well pinkified, yet with a focus on awareness and information.  All the staff wore little pink ribbon badges and there pink ribbon signs on doors, walls, counters and a good deal of information and details about breast cancer and screening.

I knew that my tests would take place in the imaging department, but was not sure where to go so I found myself magically at Counter No 2.  I knew the staff there would make sure I would head in the right direction and do the right thing.  Besides, it is next to the Lab and the blood letting counter so I thought that I would be packed off in that direction.  After a couple of minutes I was called and ushered into one of the side rooms, where I usually have blood pressure, weight and temperature taken.  No sign of the usual equipment which took me back a little, but I really don’t question things, I just do as I am bid.  And I was bid to lie down on the examination couch.  This was a bit unexpected and the nurse was not able to tell me why, so I just lay there under the sheet and waited patiently to see what would happen next.

I realised I had started chittering again – I was not cold but just very nervous and my teeth were rattling away.  This was so reminiscent of my scans leading to Diagnosis that I think it made me chitter even more.

Soon enough, the door opened and to my surprise, one of the oncology nurses came in with her picnic basket full of syringes, vials, tape and other goodies.  She greeted me warmly and commented on my regrowing hair!  She asked which arm she should inset the needle, and thinking this was for the blood sample, I gave my right arm (as always, considering Twang Arm is now exempt from these treats).  The needle was a bit painful going in, and she told me it had been a bit blunt – ouch! A great deal of blood was taken (three large vials, one for each Doctor) and I looked down to see if the needle was out yet, and if she was putting the tape over the puncture area.  To my surprise the needle and syringe had been replaced with a small tube, and when I looked carefully, I could see an IV line had been placed into my arm.  I have approached the tests with a vague knowledge of what the procedures would be, but had believed that it would mainly consist of scan, ultrasound and mammogram.  With the sight of the IV line I asked the oncology nurse if this was for the tests and she confirmed that this was for the CT scan.  Heart stopping moment.  There would be a scary unknown and possibly painful or uncomfortable procedure with injecting dyes and goodness knows what.  And the IV line was pretty sore. (Confirmation of me being truly a wimp).

I was then taken to the Imaging Department and had almost sat down, when a nurse came to take me to get changed into a fetching purple Imaging Gown.  As soon as I was changed I was taken straight to the mammogram room and transported instantly to the same place a year ago.

This time the procedure seemed to be a fair bit quicker, probably mainly because there is only half as much to mammo.  Twang Arm was mildly uncooperative when they were trying to get an image of the lymphatic area under my arm and refused to extend very much.  Twang Arm doesn like extension and resisted attempts, but eventually the right positioning was achieved and I was able to put my gown and glasses back on.

My chittering continued and I was told that CT scan would be next.  CT scan signified scary injecting of something into my veins and I knew it had weird reactions.  I was settled on the CT bench and my arms placed above my head and then the procedure and bill explained to me.  I was asked when I had last eaten, and if I was allergic to anything.  Then the side effects of the fluid were explained to me, and I was given instructions on holding my breath when the machine told me to. I was also asked if there was any chance I was pregnant.  I joked about the impossibility of that scenario and was asked to sign a “not pregnant” form, which I duly did.

Once those preparations had been carried out, I was slithered into the doughnut like machine a few times, holding my breath as directed and trying not to think too much about the injecting, which I knew was imminent. Soon the staff came back and I was allowed to relax my arms.  Next they approached the IV line, and explained they would put saline through first.  Then they again explained the side effects of the fluid and given a half litre of water to drink, so that my stomach was full.

Then the scary thing could be put off no longer.  They told me they would start to inject the fluid and I prepared to feel very hot all around my body (verbatim) which indeed I did!  And a bit odd.  It soon passed though and with some more breathing in and holding, more washing machine noise and movement from the CT machine, and then I was slithered out again.  I was unclipped and released from all of the wires and things and able to sit up.  The staff told me I could head to the next test, and gestured towards my shoes as an invitation to leave the CT room.  That prompted a giggle and comments that my shoes are tiny and look like children’s shoes!  True!

I was then take to the Lady’s Corner – a waiting area for women only and the nurses wrapped me up in an enormous towel as I was shivering again.  I think it is also a reaction from the fluid and they warned me to watch out for a rash, dizziness or any other sign of allergic reaction.  Then they brought me a series of cups of hot water to drink to make me feel warmer, and to help to start flushing the dye out of my system.

Before long I was called to go into the Ultrasound Room.  This was another foreboding experience, as it reminded me so much of Diagnosis Day a year ago.  I lay there waiting for the Doctor, staring at the vacant ultrasound image on the screen on the wall, knowing that I would again be drawn to what it was showing.  One the Doctor arrived, she methodically worked her way around the right side, my eyes fixed on the screen but of course I had no idea what the swirling images were telling.  Before long she homed in on a little shape and in the same way as the space was pegged last year, she pegged the dimensions of this small shape.  It was clearly not a spaceship, but it was something, my mind fixing on the report of a small cyst present last year in the right side.

Very soon after that she stood up and her assistant started wiping off the gel.  Then she explained to me that she could see a small cyst, which did not worry her but that she wanted to get more images of it by mammogram just so it could be looked at more carefully.  She mentioned that it looked as if might have been bleeding a little so she wanted to check that out.

So off I went back to the mammo room and was put through more contortions as they tried to squish me at a different angle.  This involved my feet lifting off the floor as it felt as if I was being simultaneously pulled into the machine. My port had a squishing too and before too long they had got the right pictures and I was allowed to go and put my clothes back on.

It was already approaching 10.30 by this time, and my appointment with Dr A was imminent so I headed up to his consulting area, with the IV line still in place and still pinching.

I had my weigh in, height check (no change there) and blood pressure checked and to no one’s surprise the BP was high.  Dr A called me in, and we went through the blood results.  Generally he was pleased, again.  Kidney, liver functions all good, slightly anaemic (thanks chemo), still pre-diabetic despite my careful eating, excellent cholesterol (that must be proof of the careful eating!) and all other functions normal.  It is wonderful how the body repairs and regenerates after such gruelling treatment. He checked my BP again, and it had nicely reduced which was good.  I sneaked a quick look at the tumour marker and we saw that it was very slight down from the last result.  Still a tad above normal but not higher and I was greatly relieved.

I returned to Counter 2 to see if my IV line could be removed as it was pretty uncomfortable and the longer it was kept there, the more I would worry about more IV stuff happening.  It was a fun challenge for the Nurse to remove the tape as it took all the fine post chemo re-growth with it.  Every time I though the needle was out, I realised it was just a bit more of the tape!  Finally, and with an apology for making my arm bald, the Nurse was able to remove the IV line and I was much more comfortable.  So then we were released into the outside world, to return in the evening to see Doctors W and W2 and see what the scans and bloods would reveal.

I actually felt fairly relaxed after all this.  I knew the tumour marker had not gone up again, and that although I seemed to have a cyst, it did not seem to ring alarm bells.  All very very different to the 2 October experience last year.

However, by the time I returned to the hospital for Drs W and W2 I was beginning to get pretty nervous, and was thinking of the possibilities of biopsy on the cyst, as well as unknown and unexpected surprises from the CT scan.

I settled down at Counter 2, and before long heard the familiar booming voice, which was followed by Dr W2 appearing at his door.  I was called straight in, and even before I had sat down Dr W2 announced that he had been looking at my CT scan.  That made my stomach turn over, as he is very direct and I know that the important messages come first!  He then said that everything seemed pretty normal!  Before any further discussion he said that he thought I had gained weight!  We then entered a banter which involved me saying this was not possible since I was exercising so much, and him being adamant that I was heavier and looking through my notes.  With great delight, he announced that I was in fact I kg heavier than my last visit!  Grrrr.

Having won that point, he then examined me and checked on the port and abdomen area before letting me dress and return to the seat where he had already started a discussion with Hubby J about a number of topics not related to Breast Cancer!

Then he went over the scan results, and noted that it was pretty much normal, although it showed a couple of lumpy areas on my liver which suggested follow up scans.  His take on that was that he did not see it as particularly worrying and joked that the hospital was making money out of me!!  He also said there was a small area of inflammation on the lung which might be related to radiation but again was not particularly worrying.  I mentioned the marker and he was not in the slightest interested and his conversation returned to curiosity about upcoming events rather than medical stuff!

He also asked where the previous FBG was, remembering how tired, weak and frail I had been, and I interpreted that as a great reflection on how much I have gained in strength and recovery.

He said that I should come back in 3 – 4 months for the next general check and not to forget to clean my port every 6 weeks.  Then we were back at Counter 2 saying goodbye!

Our appointments are always a bit of a whirlwind, and it is a great balance to see Dr W afterwards as it gives me a chance to ask more questions on things which occur to me after my consultation with Dr W2.  So we headed to Counter 3 and auspicious Room 59 and waited patiently for Dr W

Before long we were ushered in, and Dr W asked how I was doing.  He was pretty surprised that I was already having my Big Check, saying it did not feel like a year since my diagnosis.

He examined me thoroughly and noted some “progress” with Twang Arm.  Take that Twang Arm!  I know that I do not have full motion but slowly I am heading in the right direction.

He went through the mammo results carefully, putting the images of the cyst on the screen and talking through the report.  He said that it was not worrying, that it had the signs of some bleeding.  I told him about my fall in Dubai airport and he did think that it could be related.  He spoke the words that I needed to hear, that he saw no signs of cancer, and no need for any concern.  He said that rather than wait for a year to re-run the scans, that ultrasound should be done in 6 months and that another CT scan should also be done to look at the liver and its little lumpy shapes and check if they were changing at all.  Although ultrasound had been recommended for follow up on the liver, he felt that it would not show enough and that CT scan would be needed to really give a contrast and comparison.  He said he would see me in 3 months for the regular check, and we would do the scans 3 months after that.  And then we were free to go.

I felt much greater relief than I did after the last check.  I know that the tumour marker freaked me out last time and it helped that it had not raised further this time.  Moreover, though, I was hugely reassured by the extensive nature of the tests.  It was a real hunt for any sign whatsoever of anything suspicious, by various different tactics.  I am further reassured by the re-run of the scans in 6 months time – a year is a long time when you are anxious about invisible happenings going on in your body, so I am happy that I will have an extra check.

However, that did not mean that I felt like leaping about and squealing with excitement.  Instead, I felt drained, emotional and weepy.  But NOT worried, and that feels incredibly good, and very glad to be this side of the Big Check and a very thorough Annual Hunt.

The Headlines

The detail is going to take a little time to post, so if you want the headlines from today’s extensive “Hunt the Suspicious Signs” activities, please see below:

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I am relieved, but exhausted, and there are some little whatsits to follow up and keep an eye on.  And oddly, I feel more like weeping than I have throughout this whole year.