Tropical Cancer

Amid all of the discussion about pinking and whether or not awareness is outdated, I have been working alongside a small group to organise an event in Yangon to promote Breast Cancer Awareness.

The event took place yesterday afternoon, Saturday 26 October under a moody sky and surrounded by tropical vegetation.  We shared personal accounts (Myanmar and international), asked and answered questions and created a space to learn how to do a self-examination.  We have created a Facebook page with some images of the day.

Tropical Cancer is incredibly complicated and I learned a great deal yesterday and gained a little more insight into the situation here.  A slow reveal which confirms that we may have a great deal in common, but there is a world of difference in our cancer experiences depending on who and where we are.

In the meantime. I gather my thoughts , impressions and memories of the day to share in the coming days.

breast cancer awareness yangon 2013

The world we live in – the world I live in

What an amazing world we live in, instantly connected around the globe through our little screens or devices. However, more than this, I am reminded of the amazing world which I am lucky enough to be part of. This weekend many people in Myanmar have been in festive mode with the Thadingyut Festival of Lights  which is celebrated on the full moon of October.  I have written about  Thadingyut before – it is a very spiritual and beautiful festival.

Thadingyut 1I decided to head out in the early evening on Saturday, the full moon day and first day of Thadingyut, just as the light was fading.  I wanted to wander around my neighbourhood with my new toy – a Nikon SLR which I hardly know how to work.  This would be a bit of practice, but also a lovely way to start the evening and the opportunity to see the way the different houses and buildings were festooned in lights and candles to mark the festival.

Thadingyut 2All around, candles were being lit and lights strung.

Thadingyut 3

Thadingyut 4

And crowds gathering at the temples.

Thadingyut 5As  I was walking down the road, watching my step carefully as this was where I fell badly earlier this year, I spotted something moving on the pavement.  I could not see it clearly, but it looked like a very hair caterpillar and that called for some further investigation.

As I looked more closely and trained my lens on the critter, I realised that there was a highly interesting specimen in front of me.  This was no ordinary caterpillar – this was a very shiny being, wearing a luminous green outfit and set in a body which seemed to impersonate pine foliage.  It was the weirdest shape and did not look as if it belonged to the world we know.

Scary yangon beastieI must have looked extremely odd, crouching over this beastie, taking photo after photo.  People slowed down and I learned the Myanmar word for caterpillar and more importantly, that this little fellow bites!  He was also camera shy and continued his trek across the pavement, ignoring the fact that his pic would later be shared on Facebook and generate a fair bit of interest.

Yangon beastie on the moveIt seems that he is some kind of banana tree resident and has quite a vicious sting with poison-tipped spikes.  I have consulted Professor Google but not yet been able to conclusively give him an accurate label.  I showed his picture to friends and colleagues here and it seems he is a fairly elusive chap too as no one had seen anything quite like him.

Despite his alien appearance he is very much of the world that I live in. What a reminder that we live in a fascinating and surprising world indeed.  And this is yet another reminder that my own surroundings have a particularly exotic flavour.

Thadingyut lights in leaves

Welcome to my world!

The world we live in

What a fascinating world we live in.

Scotland 2010 171

Last Monday morning, I was sitting in the departures area of Yangon airport, checking email and sipping a cup of tea when my eye caught sight of what was to become the subject of a major gecko rant.  On the other side of the world, as my day was getting underway, night had fallen where the post had originated. As my day progressed and I travelled to my next door country, my thoughts kept returning to the inappropriate nature of this post and little mini rants formed in my mind.  By the time I had checked into my hotel room in the evening, these had gathered speed to such an extent that I had to activate the offload and download function in the form of a rare, sweet rant. Within ten minutes, I was quickly reviewing the words on the page, and pressing “publish”.  I immediately felt better for this being “off my chest”.  In more ways than one! In a matter of nanoseconds, my rant was online and visible right around the planet.  Our side of the globe was in darkness, and the day was beginning across where the original post had come from.

What an amazing world we live in.

What happened next was dizzying.  I realised that the rant was attracting interest and attention by the way the stats started to rise.  However, it was late and I was soon tucked up in bed and nodding off, preoccupied and focused on the coming day.  After my usual night time bathroom visit, I peaked at the stats to see if the rant was still being read and was astounded to see that the hourly views reported hundreds of visits per hour.  Hundreds?  Mine is just a modest little blog which has a cosy space in the blogosphere.  I am delighted to have days when there are over a hundred visits, and more usually have tens of visits.  My previous record was 398 in one day and that had been a very happy day!  Now I was seeing more than that in an hour!  I almost wanted to press some magic “stop” button as this was starting to feel rather scary and out of control.  I am not sure what constitutes “viral” but I would class this as at least”ballistic”!

What a surprising world we live in.

It is not very often that I slip off my comfortable spot on the fence in this space. I much prefer to share thoughts, inspirations, experience and reflections which are less contentious.  But sometimes, there is just no choice, A rant is all that will do and rant I will.  What does not fail to surprise me however, is the attention which my rants receive in comparison with posts and writing which have been far more carefully  considered and composed.  I usually spend time thinking before writing and reviewing my blog posts, gently refining language to convey just what I wish to say.  Whereas the rants take shape very quickly and with not enough review and revision.  So for this particular one to reach so many parts of the world was overwhelming and dizzying. How ironic that a rant rattled off the keyboard in ten minutes than attracts far more attention than carefully composed poetic reflective prose.

What an intriguing world we live in.

Most of Tuesday I was offline as I worked my way through the hospital checks, so I was even more surprised that evening to see that the blog had not been at rest at all while I was disconnected.  I watched the stats soar through the evening as visits from all around the world were being logged.

Zizzing around the world

I continued to check with one wary eye into Wednesday and the stats continued to rise.  My regular viewing numbers had all but disappeared against this sudden and unusual high level of activity.

stats

In that first day alone, there were over 4000 views.  This continued and within 3 days the rant had ranted in over 60 countries (the figures below are a 24 hour snapshot). Astonishingly there had been more visits in those 72 hours than the blog had welcomed in the whole of 2010! I have to admit that I was really rather relieved when the views started to slow down.  It is a strange sensation knowing that your words are being read by such a variety of people and you realise just how vulnerable and exposed we are online.

# Country ↓ Last 24h (21:00 – 21:00) Current Hour Complete Interval
Pages Hourly Pages Cities Pages
Min Pages Max Pages Avg Pages Min Cities Max Cities Avg Cities
1  Vietnam 1 0 1 0.04 0 1 0.04 0 0 1
2  United States 2,647 10 273 110.29 7 174 75.92 157 107 2,804
3  United Kingdom 284 0 53 11.83 0 32 7.13 33 16 317
4  United Arab Emirates 2 0 1 0.08 0 1 0.08 0 0 2
5  Turkey 4 0 1 0.17 0 1 0.17 1 1 5
6  Thailand 42 0 11 1.75 0 2 0.54 4 1 46
7  Switzerland 15 0 4 0.63 0 3 0.54 0 0 15
8  Sweden 1 0 1 0.04 0 1 0.04 1 1 2
9  Spain 7 0 3 0.29 0 3 0.25 1 1 8
10  South Africa 2 0 2 0.08 0 1 0.04 0 0 2
11  Singapore 4 0 1 0.17 0 1 0.17 0 0 4
12  Puerto Rico 1 0 1 0.04 0 1 0.04 0 0 1
13  Portugal 1 0 1 0.04 0 1 0.04 0 0 1
14  Pakistan 3 0 1 0.13 0 1 0.13 0 0 3
15  Oman 1 0 1 0.04 0 1 0.04 0 0 1
16  Norway 3 0 2 0.13 0 2 0.13 0 0 3
17  Nicaragua 2 0 2 0.08 0 1 0.04 0 0 2
18  New Zealand 8 0 2 0.33 0 2 0.33 0 0 8
19  Netherlands 11 0 2 0.46 0 1 0.42 1 1 12
20  Myanmar 17 0 6 0.71 0 2 0.38 0 0 17
21  Mexico 1 0 1 0.04 0 1 0.04 0 0 1
22  Malaysia 1 0 1 0.04 0 1 0.04 0 0 1
23  Lithuania 1 0 1 0.04 0 1 0.04 0 0 1
24  Korea, Republic of 4 0 2 0.17 0 1 0.13 0 0 4
25  Kenya 1 0 1 0.04 0 1 0.04 0 0 1
26  Japan 4 0 1 0.17 0 1 0.17 0 0 4
27  Italy 11 0 4 0.46 0 3 0.38 0 0 11
28  Israel 10 0 7 0.42 0 1 0.13 0 0 10
29  Ireland 11 0 4 0.46 0 3 0.33 1 1 12
30  Indonesia 2 0 1 0.08 0 1 0.08 0 0 2
31  India 5 0 1 0.21 0 1 0.21 0 0 5
32  Iceland 1 0 1 0.04 0 1 0.04 0 0 1
33  Hungary 3 0 1 0.13 0 1 0.13 0 0 3
34  Hong Kong 1 0 1 0.04 0 1 0.04 0 0 1
35  Guyana 2 0 1 0.08 0 1 0.08 0 0 2
36  Guernsey 1 0 1 0.04 0 1 0.04 0 0 1
37  Germany 12 0 3 0.50 0 2 0.42 0 0 12
38  France 12 0 3 0.50 0 2 0.42 0 0 12
39  Finland 3 0 2 0.13 0 1 0.08 0 0 3
40 ?? Europe 2 0 2 0.08 0 1 0.04 0 0 2
41  Egypt 1 0 1 0.04 0 1 0.04 0 0 1
42  Dominican Republic 1 0 1 0.04 0 1 0.04 0 0 1
43  Denmark 2 0 1 0.08 0 1 0.08 0 0 2
44  Cyprus 2 0 1 0.08 0 1 0.08 0 0 2
45  Costa Rica 2 0 2 0.08 0 1 0.04 0 0 2
46  Chile 1 0 1 0.04 0 1 0.04 0 0 1
47  Canada 145 0 20 6.04 0 14 4.75 1 1 146
48  Bolivia 0 0 0 0 0 0 0 2 1 2
49  Bermuda 1 0 1 0.04 0 1 0.04 0 0 1
50  Belgium 27 0 10 1.13 0 6 0.88 0 0 27
51  Bangladesh 4 0 1 0.17 0 1 0.17 0 0 4
52  Bahamas 1 0 1 0.04 0 1 0.04 0 0 1
53  Austria 1 0 1 0.04 0 1 0.04 0 0 1
54  Australia 37 0 7 1.54 0 5 1.17 2 2 39
55  Afghanistan 1 0 1 0.04 0 1 0.04 0 0 1

What an astonishingly interconnected world we live in.

Scotland 2010 171

If I had been diagnosed ten or more years earlier, there would have been little or no online community.  My breast cancer world would have been so much smaller and more contained.  Now we have Facebook, Twitter and all manner of communication on devices which we carry around with us.  With one click, a thought or rant is sent over the blogosphere, scattering and sharing the words we key in, to land in the most unexpected dusty corners of the planet.

What an incredible world we live in.

Aiming for boring, avoiding interesting and ending up complicated!

What a strange 72 hours or so it has been. I have travelled internationally, felt fraught and anxious, been unusually outraged, been carried along a conveyor belt of tests, scans, blood draws and appointments and finally emerged through other side. I feel as if I have been passed through one of those old washing mangles!

mangleAs has been the norm for the past however many checks I have been through now, the process began with a fast from midnight of Monday. On Tuesday morning I presented myself at Counter 2 (of my hospital) with my usual smile and received the usual warm greetings from the staff.Behind my smile there is the usual nervousness as I know I will be guided towards the first step of the day. Appointments, and especially the Big Check feels like a conveyor belt.  I turn up at Counter 2 and from there am set in a process which will spit me out later once I have passed the variety of stops on the way.

And indeed, in no time I was on the conveyor belt and heading towards the first stop – the lab and the blood letting. After that brief stop, I was back on the conveyor belt and being ushered towards the imaging department for the next step – mammogram. Within fifteen minutes I was off again and heading to the X-ray rooms, each time passing one of the places I hate most – the CT scan room.  Bleurgh.

Within 45 minutes of arriving at the hospital, X-ray was also done and I was being led to the ultrasound room, currently in a temporary space due to the installation of a new MRi machine.  Every year, the ultrasound brings a chill to my soul.  I am instantly transported to October 2nd 2009 when I was watching the technician find ghostly spaceship shapes and pegging contours of more than one mass. This year was no different in terms of the sensation of dread and fear, but in the temporary room there was no screen above my head for me to see the images on the screen.  If I turned my head and craned my neck I could see what was going on, but it was preferable just to lie still and let the process take place.

In contrast to the mammogram and x-ray, the ultrasound took for ever.  Occasionally I peered over my shoulder but knowing I understand nothing of the shapes on the screen I quickly gave that up and tried to zone out.  But that was not so easy.  She was paying particular attention to one part of my upper abdomen around and below my right armpit.  More and more cold jelly appeared on my skin and the pinging and pegging started as she worked her way around whatever she was working her way around.  I think that some “priing” noises were the sound of saving an image, another “beep” noise signified pegging a shape. Or perhaps it was the other way round.  At any rate, I could not work out which was which and just listened to the sounds as my stomach tightened the more this continued.  Eventually, she stood up, told me she was finished and walked out of the room.  And that really rang alarm bells – usually I get a little informal feedback, confirmation that there are a couple of small cysts and liver wibbles but nothing to worry about. I hate hearing nothing.  It freaks me out, even more than the undue attention which had been paid to that one particular area which had started out the freaking out.

It is sobering getting cleaned up and changed after these tests and scans.  It all becomes immediately real again.  And I cannot describe the torturing fear in that space of time between scans and review/results. I am extremely fortunate that having my checks in Bangkok , that time is far shorter that elsewhere. I was told to go and eat breakfast, but have no idea what that was or whether I even finished it. My head was focused solely on the repeated scanning of one area and the abrupt departure of the doctor.

Waiting in the area near Dr W2’s consulting room passed in a daze.  I did not even attempt to read my KIndle and could make no sense of the obvius images on the TV with reports of flooding in other parts of the city. I was in another, dimension, suspended and unable to move in any direction.

Eventually, my appointment with Dr W2 came round and I moved into his office. As I sat down, he was reading the scan reports.  There was a great deal of text on one of the pages and I could feel my heart rate increasing as he read over the results with a dead pan face.  Finally he looked up.  “It’s OK” he said.  Your mammogram is normal.  Your X-ray is unremarkable.  And the Ultrasound is mostly fine.”  I could feel my eyes welling as he spoke those words.

I of course asked about the alarming attention of the scan and he told me that there are some “wibbles” (that is my medical term not Dr W2’s – I can’t remember what he called them) on my liver.  My liver is not young – in fact it is the same age as I am and showing what is likely to be signs of aging. He will continue to monitor these marks.  Previously, CT scans have shown up liver wibbles, but (thankfully) I had not CT scan this time.  (I hate them SO much). There are more wibbles but “favoured benign” on the ultrasound.

He told me that my tumour markers were not worrisome – one had risen a little but has been consistently higher wince the embolism so he is not worried.  And the other one has gone down from the slightly upper range of normal to low!  Which is very welcome.  He asked me if I am taking my medication.  He asked me about three times, when of course alarmed me. Despite the heavy side effects I am taking my meds meticulously and told him so.  We went on to talk about the side effects. He has suggested another med which should help with the joint pain and stiffness.  Let’s see how it works. He examined me and noted that my right leg was slightly larger than the left which drew his attention.  In fact it drew his attention so much that he did not even notice my funky toenail art!  That is not comforting at all!  He is also requesting another bone scan on my next round of checks in 6 months which is also a tad disquieting.

Finally I got his verdict.  “Fine but complicated.” With the original Stage 3 diagnosis, the pulmonary embolism, side effects and the need to take a number of heavy meds that makes me “complicated”.  Which is ok, in that it is far better than being “interesting”. I was “interesting” when undergoing the chemo and he would have to calculate how many drips of toxins to give me to maximise the effect of the chemo without over toxifying me! I was “interesting” when I had spaceship lumps and unusual pathology.  No, it is not fun being “interesting to an oncologist”. It is not, however, as good as being “boring”.  That is what I really want to be.  So boring that my oncologist would have to comment on my funky toenails as there is nothing else of interest to talk about!  One day perhaps?

I also saw my lovely surgeon Dr W and he was also reasonably happy with the results.  He asked me how long now since diagnosis, and when I told him it was 4 years and 8 days he expressed surprise.  “That’s incredible” he said.  I am not sure why it is incredible – I prefer to think it is because time passes quickly and not that when I originally presented he did not expect to see me in 4 years time.  I did not ask him why in case I did not like the answer.

So, finally I reached the point where I could get off the conveyor belt, once I had picked up another six months of medication and the paperwork and walk out into the sultry Bangkok evening air two days after I had embarked on this round of checks.  Able to breathe out, at least for the next six months. Which I know is exactly what I wished for.

exhaleI guess that NED (No Evidence of Disease)and I are not exactly walking arm in arm along a sunny path, but we are kind of in the same town.  Maybe we can get a bit closer in 6 months time?  That sure would be good.

Metastatic Breast Cancer Awareness Day

A reminder – October 13 is National Metastatic Breast Cancer Awareness Day.

October 13 is the ONE day of the WHOLE Breast Cancer Awareness Month that calls attention to those who have died (40,000 annually) and the 150,000 LIVING with this incurable disease in the US.

Here are some important facts from: http://mbcn.org/…/

13 Facts Everyone Should Know about Metastatic Breast Cancer

(click HERE to download a flyer you can print and distribute)

1. No one dies from breast cancer that remains in the breast. Metastasis occurs when cancerous cells travel to a vital organ and that is what threatens life.

2. Metastasis refers to the spread of cancer to different parts of the body, typically the bones, liver, lungs and brain.

3. An estimated 155,000 Americans are currently living with metastatic breast cancer. Metastatic breast cancer accounts for approximately 40,000 deaths annually in the U.S.

4. Treatment for metastatic breast cancer is lifelong and focuses on control of the disease and quality of life.

5. About 6% to 10% of people are Stage IV from their initial diagnosis.

6. Early detection does not guarantee a cure. Metastatic breast cancer can occur 5, 10 or 15 years after a person’s original diagnosis and successful treatment checkups and annual mammograms.

7. 20% to 30% of people initially diagnosed with early stage disease will develop metastatic breast cancer.

8. Young people, as well as men, can be diagnosed with metastatic breast cancer.

9. Like early stage breast cancer, there are different types of metastatic breast cancer.

10. Treatment choices are guided by breast cancer type, location and extent of metastasis in the body, previous treatments and other factors.

11. Metastatic breast cancer is not an automatic death sentence. Although most people will ultimately die of their disease, some will live long and productive lives.

12. There are no definitive prognostic statistics for metastatic breast cancer. Every patient and their disease is unique.

13. To learn more about National Metastatic Breast Cancer Awareness Day on October 13 and to access resources specifically for people living with metastatic breast cancer and their caregivers, visit www.mbcn.org.

 

Unbelievable.

It takes quite a lot to rev my temper engine, but this is beyond my comprehension. Offensive, insensitive to the extreme and in my view, utterly useless.

Unbelievable

These are just a few reasons that this has incensed me:

  • October 13th is the sole day dedicated to Metastatic Breast Cancer, in itself woefully inadequate.
  • Many women have had surgery which means that not wearing a bra is in the least extremely uncomfortable.
  • Many of us are trying to hide the fact that our surgery brings significant asymmetry – not wearing a bra would be excruciatingly embarrassing.
  • Most surgery for breast cancer brings pain and often considerable restriction in range of movement.  Waving your arms in the air (as in the image above) is another indication of how far removed this is from reality.
  • What about men?????

So, what on earth could not wearing a bra for a day possibly achieve? 

Not awareness. Not respect. Not much needed research. Not action.

And certainly not a cure.

This is October too.

Today is October 2nd.

On October 2nd four years ago, I was holding my breath, pleading and bargaining with myself, willing the lump and asymmetry in my breast not to be cancer.

Late in the evening of October 2nd four years ago, I heard those words, those unforgettable words which can never be unspoken.

This is highly suspicious of cancer.

Today is October 2nd.  Today is my fourth cancerversary.  I have come a long way since hearing those words, yet too often I have no idea where I am.  I stand in a strange space, the ground underneath my feet seems unsure.  Words and emotions swirl around my head.

The cancerversary is a strange beast.  Not a day for celebration. Rather a day of recognition, quiet reflection and gratitude for a a present which is precious and fragile.

Misty Rakhine morning