No Seven Year Itch

This is my 7th cancerversary. And I am beyond happy to be here to type those words.

If there’s something I have learned these past years about cancerversaries, it is this. They are pretty much all the same but they are all different too. Each year, similar emotions are stirred. The memory of those words “highly suspicious of cancer” never fades, nor does the memory of feeling petrified. Petrified in its most pure sense, being frozen by fear, immobile, terrified and numb. The feeling of loss, that comes when faced with mortality. The knowledge that things can never return to they way they were before diagnosis. Yet, in seeming contradiction, I have found each cancerversary different. Some I have marked in quiet reflection and thankfulness. Some more analytical than others, and some more intense than others. None, not one has been celebratory. October is brimming with memories and landmark days as well as being compounded with the irony of Breast Cancer Awareness Month so I am surrounded by reminders both in my own head as well as all around me.

October also marks the time of the Big Check. Usually I roll up at Counter No 2 of my familiar Bangkok hospital, am greeted like a long lost friend and find myself on a conveyor belt of blood draws, scans, x-ray, mammo and vitals before seeing my dream team who unravel the mysteries held in the various tests. That’s usually when the tears start, while sitting waiting to wrap up the final paperwork and leave the hospital. An overwhelmingly emotional mix of relief, grief, release of tension as I find myself connected, sometimes a little less directly than others, with NED, No Evidence of Disease.

This year is very different. There is no seven year itch which leads to a rupture in the long relationship with my wonderful team in Bangkok. The reality is that I am no longer an hour’s flight from this team which has looked after me so well for so many years. I am now on Africa soil and would need to find a new dream team in the region. I had considered returning for one final Big Check in October but the unexpected health hiccup in August meant that was unrealistic and a long haul trip unwise. However, the extra time in the UK meant that was able to hurriedly arrange a check up. This was far less detailed than the Bangkok checks, protocols being very different and incorporated mammogram and bloodwork. And no tumour markers. We know these are controversial, and not considered reliable. I know that, yet the yearly or twice yearly marker check is one I cling to as I find reassurance in stable results. It has been strange starting my story at the beginning with new specialists and support teams. It was unsettling not to have a physical examination. I almost feel that I need to go through the intensity of so many tests to be able to breathe when I come out the other side, always knowing that breathing is a luxury and not guaranteed. This year, my bloodwork was fine. Kidney and liver functions and the other key bloodwork all normal. Slightly anaemic, unsurprisingly given the bleed just beforehand. And the mammo was also unremarkable. All reassuring and welcome news delivered over the phone just a few hours before I boarded my flight to return to Africa. I had half guessed this though. The mammo had been carried out a few days earlier, and the oncologist had my phone number and knew I was leaving the country. I knew that if there was something worrisome, then I would have received a call much earlier. Though my heart did stop when her PA called me with the opening words “unfortunately…” This was not related to the tests, thank goodness, but to difficulty in getting me a replenishment of Femara before I departed! So there was no moment when I was shooed out of Dr W’s door to be banished until the next round of checks. No release of  tension, nor tears. Perhaps the seven year point coincides with this new landscape and brings a new perspective even to the Big Checks.

So with the Big Check behind me, friendship maintained with NED, how do I mark this seven year cancerversary? I always have something to say, being a “remember-the-date” kind of girl and October 2 with its cancerversary status is one firmly etched in my mind. This morning Facebook welcome me with a swathe of reminders about the previous posts I have written on this day over the past years. Last year my Big Checks fell on the same day and date as the diagnosis six years previously and I focused on the similarities and differences of those appointments.  The previous year marked five years after diagnosis, a time scale which is widely held to be a magical milestone but which is far more complex. At four years, I was in a contemplative mood with few words but a great deal of thinking and remembering, noting that this was “a day of recognition, quiet reflection and gratitude for a a present which is precious and fragile“. On the third cancerversary I wrote about the line in the sand which you cross when you hear the cancer words. That line which marks the time before and the time after. At the two year point, I dwelt on what I had lost and what I had gained, much of it intangible and psychological. All of it real and intense.

But the very first cancerversary is one which retains its own particular character. That one year mark was an important one, especially given that I did not think I would see Christmas beyond diagnosis, let alone a whole year. Life had changed beyond recognition and I wanted to tell cancer a few things. So I wrote a letter to cancer. I re-read it this morning and realise that in fact, much of this sentiment holds true years later, so I have decided to share the letter again.

October 2 2010

Dear Cancer

It is a year since you came into my life and it’s about time I told you what I really think.

You were uninvited.  And unwanted.  And unexpected.  You have changed my life beyond belief and it really will never be the same again.

I had no choice about your unwelcome arrival, you didn’t give me any chance to opt in our out.  You were just there.

The first time I realised you might be there I remember a terrible fear. It was late September and I remember thinking that I would not see that Christmas.  The thought of you kept me awake at night, my mind veering between hope that there was another medical reason for your symptoms, and sheer terror that indeed you were the cause.  I admit I had never really thought that you would try and invade my life, after all you have not troubled our family before and I naively thought that you preferred certain genetic and family traits.  So when I was told that you were there I was shocked and surprised.  And terrified.

You are such a destructive force and that meant I had to endure destructive treatments.   For my survival I was trapped in an overwhelming battle between massively destructive powers. I had to lose parts of myself to cut you out of my body. My body hosted a long and violent battle between you and the toxic chemotherapy and the rays of radiotherapy as they sought out any trace you might have hidden as a seed for the future.  I know that I was left sick, exhausted and very weak but that was worth every ounce of suffering to know I tried everything in the hands of the powerful team I have to banish you.

While this has taken me through a horrible journey, when I have had numerous side effects, lost my hair, caught pneumonia, lost much of the use of my left arm and generally felt very ill, it has brought me some special things too.  The relationships with those near and dear have grown and strengthened and we have cherished time which we might otherwise have squandered.  While it was my body which you invaded, you touched the lives of many beside me with your heavy dark hand.  I have had to face up to some horrible and unpleasant procedures and been able to find a strength and resilience that I had no idea I possessed.  I have connected with many other women all around the world whose lives you have also invaded and we have shared the most private of details from the terrifying through to the hilarious.  We have laughed at your expense, even though we acknowledge that you have had possibly the bigger laugh.  Time will tell if you have the last one.  While I value and treasure these factors which I found through you, don’t get any ideas that this might endear me to you.  No, I CAN’T EVEN BEGIN TO LIKE YOU!  I get your point and I will continue to do everything possible to keep you as far from me as possible.

I am still frightened of you because you are such a destructive and determined force. You are also horribly sneaky and I know how powerful you are.  I know that I have always to be vigilant because I don’t know when or where or how you might try another attack on me.

I resent you because I am no longer able to think of the future without worrying about you coming back.  I resent you because I now live my life through what I call the “cancer lens”.  Even if I don’t need to take you into account in what I do, you have changed the way I see everything. You could say that instead of seeing life through rose tinted spectacles, I see through pink breast cancer spectacles.  I might not particularly like it, but I recognise, accept and live with it.

So I will be keeping a very keen eye open for any attempts you make to sneak back into my life.  And trust me, if you do try any comeback, you will be treated to exactly the same welcome.

Yours candidly

One Feisty Blue Gecko

This makes me think of the French expression “plus ça change, plus c’est la même chose” which translates along the lines of “the more things change, the more they stay the same”. Indeed they do. The landscape is new yet somewhat familiar in certain elements. The perspex plates which cause both physical and emotional discomfort in mammogram machines, the needles and skilled fingers which try to find blood in reticent veins and the anxious waiting all easily cross continents. Yet, the team now looking after me, and the systems and procedures are very new as is the African soil, the flowers and the birdsong.

Indeed in these times, there is always something to take us back to that which truly counts. The dry season which was underway when I arrived in Africa has given way to a short rainy season. It is less humid, and far less warm than Yangon but the thunderstorms which light up the skies are reassuringly constant in their dramatic nature. The lightning reveals the silhouettes of a thousand hills and causes electricity lines to blow. In the fresh post rain air this morning, I spotted on the rain-sodden grass an unexpected splash of colour. There in the middle of the grass was a brand new flower. As if placed there for this day of note.

A perfect, timely reminder to cherish the past and embrace the new.

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Mesothelioma?

When I was diagnosed with breast cancer in 2009, I experienced a variety of reactions. Shock. Disbelief. Distress. Sadness. Perhaps a little judgement, what had I done to cause this? However, not one person said to me, “So what’s that then? Breast Cancer? Never heard of it!” We have a very long way to go, of course, towards real levels of awareness of what Breast Cancer is and there is a wide spectrum of understanding, ranging from “the-easy-cancer, guaranteed-curable-if-found-early and you-can-live-without-a-breast-anyway” through to “oh-my-goodness-cancer-you’re-going-to-die”. But that is another story and not for today.

The story for today is about Mesothelioma. Put up your hand if you have heard of Mesothelioma? (My hand is half raised, I have kind of heard of it since my own diagnosis and connecting with the cancer blogosphere). Fine. Now put up your hand if you know what it is? (OK, you’ve got me there – I really don’t know……..).

A few weeks ago, I received a comment on one of my posts, from Cameron. Now, bloggers receive all sorts of comments which don’t quite make it to the “approve” button. I will always approve a valid comment, and while some are obviously spam or robots (and the source of many a giggle) there are some which are a little bit more difficult to figure out. Cameron’s was one of those posts, one which takes a little effort to work out.

Hi Philippa! My name is Cameron …. and I had a quick question for you! I was wondering if you could email me at your earliest convenience ………. I greatly appreciate your time!!

I headed for Professor Google and Cameron was very easy to find. I learned that Cameron’s wife Heather was diagnosed with Mesothelioma and they are advocates for awareness. Thanks to the way that the internet brings familiarity quickly among strangers in the blogosphere, I replied:

Thanks for your comment and for stopping by Feisty Blue Gecko. ……………. I took the liberty of quickly Googling you, in case the comment were spam or if you were seeking to promote a cancer curing toothpaste so am happy to see that neither of those seem to apply and you do appear to be a real person.  🙂
I imagine you are contacting me regarding the forthcoming awareness day for mesothelioma? Rather than make any more assumptions, I will wait for your email……

What I did not confess to was that my own levels of awareness were dire. I had no idea what kind of cancer Mesothelioma is and am not even sure how to pronounce it. This is a post of self education as much as broader awareness raising.

Mesothelioma is a complex cancer distinguished primarily by three factors: rarity, cause and aggressiveness. The disease is one of the least-diagnosed cancers, and it is often misdiagnosed. Mesothelioma attacks the lining of the body cavity called the mesothelium. The cancer is caused by exposure to asbestos or materials containing asbestos.. Between 2,500 and 3,000 new cases of mesothelioma are diagnosed each year in the US. On average, those diagnosed are given between 9 and 12 months to live. In the UK it accounts for only 1% of cancer diagnoses, but 2% of cancer deaths. It is rare, aggressive and particularly lethal. I had no idea.

There are three recognised types of Mesothelioma. Pleural, peritoneal and pericardial mesothelioma. 80% of all mesothelioma cases occur within the lining of the lungs. Peritoneal mesothelioma occurs in the abdominal lining, and pericardial mesothelioma in the heart’s lining. I didn’t know any of that.

The reason Cameron is so passionate about raising awareness and understanding around mesothelioma is clear. His wife, Heather was diagnosed with mesothelioma in 2005 and given 15 months to live. While mesothelioma typically affects males more than females and most commonly diagnosed in those between 50 and 70 years of age, Heather was 36 years old and the couple had a daughter of 3 months. You don’t need me to provide the terrifying maths facing the young family.

However, this is a story of hope. Heather and Cameron found specialist treatment options and Heather’s story is here. Today she is mother, wife, advocate and alive!

Cameron, Heather and their daughter Lily

And today, September 26 – is Mesothelioma Awareness Day. I have learned a great deal about this rare and dangerous cancer.

The very high profile of October as Breast Cancer Awareness Month can overshadow very rare cancers and cause division. The reality is that any cancer diagnosis is potentially lethal, and every diagnosis is traumatic. With a cancer which has a higher profile, I find benefits, but I also find assumptions which are not based on fact.

As a person who has heard words which chilled me to the bone – “this is highly suspicious of cancer” and stepped over an invisible line into a new and terrifying territory, I reach out with a hand of solidarity. ALL cancers are evil and steal so many lives.

Let us work together in the movement to understand and eradicate all cancers.

The winds of change

September is a mixed month usually in Myanmar.  The rainy season starts to ease.  I returned to a couple of days where the sky was blue, the daytime temperatures soaring and Facebook statuses celebration a break in the clouds.  Quite literally. The months of June, July and August see thick cloud, heavy rains and only a very rare glimpse of the sun.  It is sticky and uncomfortable, yet it is refreshing and life-giving.

This afternoon, I sit in one of my favourite spots, a balcony on a Yangon Tea Salon, bounded with orchids, a peaceful and creative space, attempting to catch up on bloggery and life. The earlier, hot sun has been chased away by gathering back clouds and in moments my peaceful space is turned into a rainforest.

I love the rains, though I do find the constant greyness depressing and the humidity exhausting.  The rains are warm, unlike our Scottish rain and they bring a wealth of sounds, plant life and noisy animal and reptile life into the everyday.  They disrupt.  Sudden floods and violent downpours bring life briefly to a standstill. But they bring an indescribable childish zest.  I never tire of listening to the thundering downpours.

But now, inevitably we are moving into new times.  The rains will subside, wider swatches of blue sky will appear and by late October/November the rains will be but a memory.

The Yangon sky as the seasons change

This season represents a different kind of change for me.  We move through September, and my stomach tenses, my breath shortens and my mind becomes increasingly distracted. I discovered the lump which was to be a door into a new and strange world, the breast cancer world in September 2009 and I face a number of significant anniversary and landmark days.  To reinforce this, the global Breast Cancer Awareness month shakes up a multitude of reminders and debates. And just to add to the intensity, the Great Annual Checks and Scans loom.  As the rains disappear and clouds move into the distance, All Things Cancer sweep forcefully into my line of vision from all directions.

More than ever, I will strive to keep some balance as I navigate the coming weeks.  And I am sure I can be forgiven for wishing to close my eyes and find myself in November, checks behind me and some reassurance to take forward and clear blue skies for some months ahead.

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.

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.

In 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.

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.

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!

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.

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.

And wherever or whoever we are we must respect and recognise how much we have in common and how much differs.

Magic Slippers! Fippancy alert… this post may be less than serious in places ;)

We may we have moved from Breast Cancer Awareness Month into Movember,  but there is still the issue that awareness is important but what we really need is a cure.  That is absolutely fundamental, indisputable and critical.

And that is the serious part of this post.

Moving to a less serious slant, I want to tell you about something that happened yesterday.  When I was in one of the markets in town, my eye was caught by a display of sandals which were being promoted as “Slippers for health”.  These slippers claim to bring all sorts of health benefits!

Is an elusive cure under our noses?  Or moreover, under our feet?  Perhaps I should buy a pair of these slippers and carry out a clinical trial, with plain slipper-wearers as the control group?

This reminded me very much of the time when I was watching TV when I lived in Nepal.  A number of commercials were showing in between programmes, and one came on advertising similarly amazing footwear.  The slippers in this commercial had magnets implanted in their soles, and promised stimulation of height growth.  There was a scientific diagram showing how the magnets stimulated the pituitary gland (I think..) which in turn tricked the body into growing taller!  It promised a full three inches height growth in two months!  Now I am one of the shortest adult people I know, so the thought of sandals like these was very exciting.  So exciting that I was prompted to …… buy a pair?  No, I could not resist shaping it into a short and fun poem.

21st century slippers

Last night I saw an advert
on Indian TV
in answer to the prayers
of short people like me

Now you can get these slippers
you must wear them every day
and in two months you’ll be taller
by three inches, so they say

Well I must have these sandals
and I’ll wear them every day
and soon I’ll be much taller..
How much must I pay?

And tonight I’ll watch the adverts
on Indian TV
There must be a special outfit
to make a younger, slimmer me

And you can see how this could relate to the sandals I saw yesterday 🙂

The Winds of Change

The winds of change are definitely in the air.  The days are becoming drier, more sunny and very hot.  There is still a good amount of rain, some torrential, but the skies are looking different.  There are swathes of blue, punctuated by white, grey and inky black cloud formations. It is a beautiful time of year, the vegetation lush and rich from the rains but now set amidst bright sunshine and clouds with character and feist.

As I discussed in my last post too, it another season is newly underway.  Personally, it is my anniversary season.  In only two days time I will silently and sombrely recall the words which changed life forever for me and those close to me.  The “this is highly suspicious of cancer” words.  Those days were followed rapidly by surgery, pathology reports, chemo and all the attendant extras that these entail. It is a rough and stormy season and one which I will be glad to be on the other side of, just like a rough storm indeed.

It is also a season which is becoming increasingly divisive within what is a close and highly supportive online (and offline) community of breast cancer veterans.  (Hmm – apart from the war and fighting associations – I think I might prefer veteran to survivor as a term?  A veteran being anyone who has crossed over the “you have cancer” line….  just thinking out loud here).  The season is of course Breast Cancer Awareness Month (BCAM) – often called Pink October.  I personally believe, looking at this from a global perspective, that there is no right or wrong in terms of BCAM.  The context varies wildly and we cannot prescribe for another situation.  I very much disagree with hijacking a cause or issue for profit, but will never tire of trying to highlight the very different context here and the challenges for, particularly women, in the developing world.

Many winds and crosswinds are blowing during October.

So while these serious winds of change are sweeping through our lives, what better time to step back and refresh the visual image backing the blog.  This time I have selected an image from my travels again, but the elements which I wish to share are ones which are universal.  A sinking sun against a sky scattered with cloud formations, reflected on the water.  Foliage silhouetted against the darkening sky.  The mood of the sky captures the winds of the changing season and the promise of dry days and retreating rains.

This is the complete image, and very shortly (as connectivity allows) the image will appear as the background for the next few weeks.

Season’s Greetings

It can be very confusing listening to a Scottish person speaking.  We use many words and expressions in their own unique way and often these are not abundantly clear.  For example, we go to the shop or supermarket for our messages.  Does that sound strange?  Well, it is not strange to us at all.  It simply means shopping, particularly our grocery or food shopping.  Another word we use a lot is “piece” and you would often hear talk of a cheese piece, a piece and jam (jeely piece) or be asked “what’s in your pieces today?”  To us, a piece means sandwich,. So we also have piece-boxes which are used for packed lunches.  Not quite like the tiffin pot which holds hot food and meals, the piece box holds sandwiches and maybe an apple!

One deliciously expressive word we use a fair bit is “greet”.  It has nothing to do with the broader English language definition of “to salute or welcome in a friendly and respectful way with speech or writing, as upon meeting or in opening a letter”  Oh no – we use it rather it as a colloquial term for crying or weeping and it also has the sense of complaining or grumbling.  It is not a flattering term.  Greeting is not the word we would use for a dignified, composed weep.   And it is none too sympathetic or generous.  The image conjured up of someone greeting is of a contorted face, scarlet and probably snottery, and a significant noise volume attached to it.  To have a greeting face is not something to aspire to at all, with its associations of crabbitness and grump.  (Crabbit being another wonderful expression in Scottish slang for grumpy or miserable).  For example, this description from the Scots Language Centre quotes the use of “greeting face” which is most definitely not a compliment.

So that is the greeting.  But what is the season?  Well, for me it is the season of memories, milestones, landmark days and anniversaries.  We are also on the threshold of Breast Cancer Awareness Month which in itself creates a considerable stooshie around the globe. (A stooshie being another wonderful Scots word for a commotion, rumpus, or row, or a state of excitement or anxiety; a tizzy).  And there is one serious stooshie on the horizon across the blogosphere and breast cancer world.  Thoughts on that stooshie are for another day, today my thoughts relate to that season as it relates to my own experience.

Today marks the start of this season.  For it was 23 September 2009 when I discovered the lump and life as I knew it took a turn for the very different.  The landmark days come hurtling at me after that, with October 2 marking The Day I Found Out, my Cancerversary.  That was the day I heard those life-changing, burned-onto-my-memory words “this is highly suspicious of cancer”. On October 5 I had my surgery, lost my left breast along with its tumours, a heap of lymph nodes and their nasty cells and gained Twang Arm.  Although I spent most of the day unconscious, it is certainly a day I will never forget!  On 21 October my portacath was implanted in time for the first chemo on 23 October.  Exactly a month after the day I found the lump.

So it is a season for greeting, remembering, reflecting and to a certain extent, re-living those traumatic days of October 2009.  Add to that the annual Big Check with the attendant scans, examinations and appointments and you have a very sensitive season indeed.

So please excuse me if I get a bit prickly this season…

Spooked at Halloween

Halloween is upon us, the time for ghosts and vampires, pumpkins and dressing up.  In Scotland there are a variety of traditional Halloween activities for children.  These include “guising” (a bit like trick or treat, this involves dressing up and going round the doors, singing a song, reciting a poem or telling a joke in return for money, monkey nuts and sweets),  “dooking for apples” (ducking into a basin of water to catch an apple in your teeth) and trying to eat a treacle scone dangling from a piece of string!  Our version of the pumpkin lantern is the turnip lantern, though thanks to globalisation and greater availability of pumpkins, turnips are seen less often than the  pumpkin versions.  And it is a darn site easier to make a pumpkin lantern – have you ever tried gouging out a tough turnip!

No Halloween is complete without ghosts.  Don’t tell anyone, but my hubby is afraid of ghosts.  I mean really afraid of ghosts.  I didn’t realise just how deep a fear it was, until one evening, when our conversation turned to ghosts.  It was a bit reminiscent of childhood when you tell each other ghost stores, and terrify each other but are still compelled to recount the scariest things you have heard.  Well hubby alarmed himself so much (and most of the ghost stories were his) that he was too scared to venture into the darkness of the bedroom on his own!  I had to go in advance and turn on every light possible.  And give the room a thorough checking over for anything spooky or suspicious before he allowed himself to be led there!

I realised, when living in Nepal, that hubby is not alone is this abject fear of ghosts, or “bhoot” as they are called across large parts of the sub continent.   In villages when I was travelling I was told not to go out at night for the paths were dangerous.  I thought they were warning me because the villages were on such steep landscape, but no, it was due to the risk of being accosted by  “drunks and ghosts”!  Across India and Nepal “bhoots” are highly feared.  Wikipedia tells us that Bhoots have backward facing feet, float above the ground as the earth is sacred, they cast no shadows, and speak with a nasal twang.  They often lurk on specific trees and prefer to appear in white clothing.  Often they haunt specific houses, often places where they were killed or which have some other significance to the bhoot.

When my sister in law came to visit us in Yangon she brought her Nepali fear of ghosts with her and expressed fear at sleeping in one of the spare rooms.  She was reassured in a highly matter of fact tone by our friend who said with surprise “Ghost?  But this house doesn’t have one”.  In Myanmar, there are Nat spirits rather than the ghosts we are more familiar with, and shrines are ubiquitous.  When we first arrived, the housekeeper in our interim staff house was glad to learn that we did not eat pork. She explained that the nat which lived in that house, did not like pork and if it was eaten in the house it would cause arguments.

I am probably less afraid than hubby of ghosts, although I do get a bit “spooked” with discussions or TV programmes about ghosts, the paranormal and such “other worldly” or apparently unexplainable phenomena.  But that fear is nothing in comparison with my number one fear.  The new one which came as a gift with my diagnosis.

The fear of recurrence.

This is something I discuss regularly, for example in this “Fear Factor” post.  Halloween might mark the end of the designated Breast Cancer Awareness Month, but it does not mean an end to the fear of recurrence.  Once diagnosed, every month is Breast Cancer Awareness Month.  For those living with metastatic disease, every minute of every day means Breast Cancer Awareness.   No matter how far we are from our diagnosis, fear is not far away.

It is sometimes hard for others to understand that fear is a part of our lives. This is not about attitude or being positive, it is a reality which we manage in our lives and balance with vigilance about our health.  It is not something which we can forget as we move out of October.

We all have fears.  Whether our fear is of ghosts, spiders, heights or metastatic cancer, that fear is real and valid.  No matter the basis, we have to respect each other’s fears.

Bleurgh

I awoke in the middle of the night, in a sweat, trembling and my heart racing  The details of the vivid dream refusing to recede as I struggled to reach for consciousness.  The day of the annual hospital check I had slept well, emotionally and physically exhausted.  But the following night sleep came reluctantly and when it did, it brought its own nasties, nightmares of a sky filled with planes all preparing to disgorge destruction.  In my dream I knew it was my last day on earth and the thoughts going through my mind were vivid.  In my dream sheltered inside, because I did not want to see what was coming and anticipate those last moments.  I have not had nightmares which linked closely to my experience in a conflict setting for some time.  It is over three years ago, and was rapidly overshadowed by the cancer nightmare.

Even my lay mind can see the connection between the trauma of the annual check and the extreme nightmare.

As always, I did not sleep very well the night before the checks.  I made sure to keep well hydrated prior to the fast from midnight.  As well as making it easier for bloodletting, I am convinced that dehydration contributed to raised tumour markers a year ago.

The day started early and before 7 am I was heading to the hospital, stomach churning, wondering if my landscape would be different at the end of the day.

The hospital has a pink ribbon theme and there were two large pink ribbon trees in the foyers.  A series of posters about breast cancer were on display throughout the hospital and the staff were wearing little badges.  And that is the most evidence I have seen of Breast Cancer Awareness Month.  It is a bit strange having the Big Annual Check amongst all this but it is not overwhelming.

I arrived at Counter No 2 and was greeted by Dr W2’s PA and her warm friendly smile.  A few clicks in the computer and I was waved off to the lab for blood letting.  And that answered my first question.  No CT scan today!  Phew!  For insertion of an IV line I am always directed to one of the little rooms and an oncology nurse from floor 5 with her extra gentle techniques is provided for me.  The fact I was heading to the lab meant a simple blood take.  Sure enough, 4 huge vials of blood later and a sticky plaster and the first needle stick of the day was over.   And no IV line.

I was then sent to the Imaging department.  Bleurgh.  The memories of Diagnosis Day flood back as I walk through the automatic doors and I am escorted to the changing area.  I put on the gown and return to the waiting area, my stomach churning.  Within minutes, I am called.  I am led into the X-Ray room, somewhat unexpected.  But that is fine, I am happy for an X-Ray as I have visions of my ribs and bones disintegrating thanks to surgery and radiation.  Oh, and cancer.  Just as rapidly, I am returned to the waiting area.  All too soon a technician calls my name and I follow obediently, like a biddable puppy, to the mammogram room.

Mammograms are not pleasant but nor are they too bleurgh.  While the plates are compressed to get the best possible picture, it is painful but not unbearable.  And it is soon over each time.  A few more poses, Twang Arm persuaded to stretch towards the reaches of its limits and soon I am told that the mammo is done.  Good to tick that one off.

I am then ushered into the small “ladies” waiting area to await my call to ultrasound.  And again. I am not waiting long before I am summoned.  For some reason this is the part which I find the most difficult.  Perhaps because I can see the images on the screen above me, and I can see the technician pegging contours.  And very likely because that is where I first encountered the “spaceship” shape and met Dr W.  That is where I found out there were at least 3 masses in my left breast 2 years ago. Bleurgh, bleurgh, bleurgh.

The Ultrasound technician started her procedure, carefully working her way around my chest and upper abdomen areas.  Every swimming image on the screen made my heart beat faster. I knew there had been a small cyst in my right side last year, so I was looking out for that to appear.  Nothing seemed to materialise though.  Then she moved to my abdomen area.  Little masses started appearing and soon she was pegging them and keying in letters.  I saw the word “cyst” appear.  More than once.  I asked her about the cyst in my breast and she told me that it was not easily visible this time, perhaps it had disappeared.  Cancer doesn’t disappear – does it?  I grabbed at that snippet of information and grasped it tightly.  It seemed to be ages before she finally told me that she was finished.

Relieved to be finished with the scans I sat up.  Then she burst my bubble.  She told me there was an area on my right side which was not clearly visible, and she was sending me back for more mammo images.  She wanted to see magnified images of an area on my right breast.  She also wanted my left side to be mammogrammified.  That would be a bit of a challenge.

I was led back to the mammo room and again was pulled into different directions and compressed.  I could feel the plates pinching my port but she told me not to worry about it.  It took some time to get enough flesh between the plates on my mastectomy side but eventually she seemed happy with the little she got.

Finally the scans and imagining were finished and I could return to the changing room and dress.

The physical side of this is easily tolerable.  However, the mental and emotional aspect is torturous.  All the time, my mind was going over and over the fact that there was something that they wanted to look at more closely.  I am incredibly fortunate that I get the results the same day, but even the wait of a few hours is agonising.  Bleurgh.

I am also incredibly fortunate in that I have again been able to schedule my checks at the same time as my friend.  We turn into schoolgirl cancer rebels and descend rapidly into silliness as a way of getting through the day.  Silliness verging on hysteria.  However juvenile it is though, it helps!

My next trip was to see my endocrinologist, Dr A.  Prior to my consultation I had my usual weight, blood pressure and vital signs checked.  Unsurprisingly my BP was high.  Dr A was happy that my thyroid levels are stable thanks to the thyroxine medication, happy with kidney and liver functions and delighted with my cholesterol!!  He was also happy to note a slight decrease in my blood sugar readings.  This is good news because I know I am set to follow my mother, grandmother and great grandmother towards late onset diabetes.  The longer I can keep this at bay by careful diet and exercise the better.  He was not so happy about my BP but could see that I was in a state of anxiety following the scans and preceding my appointments with onc and surgeon for the verdicts.  He was very interested in my Croc shoes and asked if they were comfortable and good for rainy season.  I told him that they were not only comfortable and waterproof but they were also quite smart and I could wear them to work.  It must be a good sign when your endocrinologist likes your shoes!! He took my BP again and noted that although it was still high, it was falling.  He saw no point in changing the dosage of meds and being happy all round with my endocrines or whatever they are, he sent me packing for 6 months.  Phew!

I had already been at the hospital around 3 hours by now, and having fasted since midnight it was time for sustenance.  My friend and I grabbed a coffee and snack and I updated her in minute detail about the scans and my worry about having been sent back for a magnified image.  She expressed surprise and alluded to my abundance of right side, saying that it surely didn’t need to be magnified.  This made us both snort with laughter and was just what I needed to hear.

Next in the timetable were our appointments with Dr W2, our shared and larger than life oncologist.  My name was called a good before the scheduled appointment time, another example of how good the patient experience is in our hospital.  They knew I would be hanging around all day so I was slotted in early.  Greatly appreciated.

Dr W2 was in his usual ebullient mood and proceeded to ask me all about the changing political landscape in my work context.  He had a good old physical examination and then he called me back to the seat.  My heart beating fast, I asked him about the scans.  He said that the imagining showed up the small cyst on my right side and the nodules on my liver which had been checked 6 months previously.  They hadn’t changed.  He was that the mammo had come up with a Birads 2 result (benign findings) and that he was not concerned about it.  My CEA tumour marker was down again and I was looking strong.  I asked him about the mark on my lower arm which I just wanted him to be aware of.  Just in case.  He pronounced it to be “age” and told me I am getting older.  This made him roar with laughter.  He loves his own jokes!

I asked him whether he has been flying commercial planes in his spare time and he loved that idea.  Then he started writing on my notes, saying out loud as he wrote “no relapse”.  No relapse – jut the words I wanted to hear.  Finally I could exhale.

I returned to the waiting area, with a grin across my face.  Even though I still had to see my surgeon, I knew the headlines and trusted there would be no nasty surprises.  Bleurgh but okay bleurgh.

Next is a trip to floor 5 and the oncology ward for port flushing.  Bleurgh  The nurses there greet me like a long lost sister and show me into one of the side rooms.  I have already applied my Emla but to be honest the abject fear which the port procedures instilled in me at one time have gone.  I don’t like the port procedure of course, but I know it is quick and easy.  There is no blood return but the nurses say that the infusion is fine and they are not concerned.  Within minutes I am holding my breath again and the long needle coes out.  That’s me flushed again.  Another task done and checked off

I settled down to a little online time while waiting for my last appointment, my attention span incapable of even engaging with Facebook.

Finally the time came for my appointment with Dr W, my other hero.  I was ushered in first which was very welcome and he greeted me warmly.   He is always very thorough in his examinations which I find very reassuring.  If there is anything at all palpable then he would be sure to find it.  He scolded Twang Arm again.  Twang Arm and I seem to have reached a kind of stalemate, a resentful co-existence.  I do have a surprise up my sleeve (;)) for Twang Arm though for some point in the future.

After the exam, I dressed and Dr W was scrolling through the many images. He is always very serious and focused as he concentrates on image after image and while I am glad that he is, I always think he is seeing something that the reports have missed.  The fact that it was him who said the cancer word to me, changing my life, makes this a nerve wracking time.  While I welcome and value his thoroughness and attention to detail, it terrifies me at the same time.

Finally he looked up though, and said that he was happy with the reports and the imaging.  Then he asked me when I wanted to come back – what about 3 months?  My lip petted as I have been anticipating the move beyond my 2 years from diagnosis and towards 6 monthly checks as a huge milestone.  I replied that I wondered if I would progress to 6 monthly checks now that I had crossed the 2 year point.  He was happy with that, as long as I keep taking the Tamoxifen.  I was planning on taking the Tamoxifen anyway, but if that was the reassurance he needed then I was more than happy to provide it.

He told me to keep on doing what I am doing and that he would see me again in six months!

So all is good.  Friend and I have been sent away clutching our envelopes with results and appointment slips for next time.

We are rather sombre but that we have made a pact.  Celebratory bubbles if all is good and commiseratory bubbles if it is not good.  I find it amusing to pick up pink bubbles.  We toast each other.

So why does it feel so weird?  No leaping about, high fiving and squealing.  I simply feel like weeping.  I have been here before, and while I would far rather be here than where I was 2 years ago, it is a strange place.  An emotional pit.

I think my nightmare reveals part of the answer. This is not the first time I have had a nightmare which takes me back to a terrifying experience I have lived through.  I have had tsunami and earthquake dreams following the checks.  This nightmare of being in an air raid is not purely from my imagination.  It opens a chapter which is usually closed, but can never be forgotten.

And I think I can understand why.  Being told you have cancer is terrifying. Being told that there is no evidence of cancer is of course an enormous relief.  However, there is an undoubted feeling that you have had a “lucky escape”. So the mind seems to flick back to another time when you are confronted with mortality.  Such as an earthquake. Or an air raid.  Previous traumatic experiences which I have lived through.  My subconscious accepts that the cancer fear has been allayed for now but it feels as if it rewinds to another point of abject fear and plays back a version in my dreams to correspond with the fear I have of recurrence.

I wonder if this is a classic sign of post traumatic stress disorder?  Irrespective of whether it is or not, it just goes to show that a cancer diagnosis is just as traumatic and vivid as a seemingly more dramatic  trauma.

I believe that this affirms the extent of a cancer diagnosis on each of us and its life changing nature.  It is indeed a huge deal. We must recognise and acknowledge the impact this has on us.

And to be honest, it’s often just bleurgh.

Where there is no pink pandemic

As we enter the month of Breast Cancer Awareness it is true that Pinktober might be upon many of us.  However, I would urge us to remember that the world is not an equal place.  I ask myself whether it is a good thing or not that the pink pandemic has not reached all corners of the globe?

I am keenly aware that I am physically and intellectually very distant from the sophisticated marketing and campaigning of the Breast Cancer Awareness Month.  I have yet to see any pink products with my own eyes, and with the exception of pink ribbon postering in the hospital I go to, I could actually remain unaware of the Pink Month.  Except for my online life that is.  I find it a very confusing and conflicting period, both emotionally and intellectually.  I follow the debates.  And I humbly appreciate and value the efforts family and friends put towards many cancer related causes, in my support.

One of the concerns I frequently hear is that there we are past the stage of raising awareness, everyone knows about breast cancer, and that the focus must change.  I respect and acknowledge that, and believe it is true I many contexts.  However, as I have mentioned here, there are still many places where accurate and fair awareness raising are essential.  There are indeed contexts where breast cancer is misunderstood and where the causes and treatments are limited.  I have already described my reaction when my colleague expressed her surprise that I had been diagnosed because I am not a spinster.  Now it is easy to be shocked at this but let’s put things in context a bit.  Cancer is (a far as I understand) a disease which flourishes in the developing world.  Childbirth at an early age and breast feedingare acknowledged to be mitigating risk factors in Breast Cancer vulnerability.  So in a situation where there are few touches of the modern world it would not be surprising to learn that the disease probably appears to be seen more among women who have neither borne children and therefore not breast fed.  In traditional settings, these women would tend to be unmarried. Hence, a spinster disease.

This has prompted me to try and put together some awareness raising activities locally, so that I can at least highlight signs which should be recognised and which should prompt women to seek medical advice.  In this context my starting point will be to talk with women.  Initially women only, though I will seek ways which are appropriate and respectful of raising awareness with men too at some point.  At the very least, I hope that it means that Breast Cancer will be talked about openly in a fairly private and comfortable setting. We will explore together what breast cancer means, starting from what people already know and believe. I expect we will also talk about what kind of treatment options exist.

In order to try and understand the situation more clearly in preparation for this, I have been talking with friends about their experience and understanding of breast cancer.  I have had some fascinating discussions and learned a great deal about beliefs about the cause of breast cancer, who is “susceptible” and treatment options for people diagnosed with breast cancer, and for that matter other cancers too.  I was not prepared for the response, and do bear in mind that I have been in Asia for 11 years in working in some very untouched areas.  From what I have learned, cancer was not openly talked about and the term “cancer” not used until more recent times.  Even today, I hear a number of references to “that kind of illness” and “the serious disease”. When it comes to treatment, traditional remedies are what people trust and feel comfortable with, and indeed are often the only option available.  When exploring this together, I am sure I will learn a great deal more about breast cancer in settings which are off the pink radar.

However, this brings a real dilemma.  By raising awareness and highlighting signs which women should be aware of., this leads on to a greater demand for diagnostics and treatment.  However, high standards of medical treatment and facilities are not readily accessible to many.  Furthermore the costs of treatment is also beyond the reach of a great number of people.  So what does empowerment and awareness achieve if options are very limited, and someone is not able to access the treatment indicated?  Is awareness raising in fact more dangerous because it puts people in a situation in which they are worse off and more afraid?

There is no easy answer to this.  The ideal would be that hand in hand with awareness raising would be a move towards broad access to treatment and care.  I guess that is what we have to strive for.

So while the debate rages around pinkification, I have the aim of sharing a side which does not generally feature in the discussions.  The reality that for many women around the world the need for awareness and treatment is urgent and for whom the debate around pink October has no immediate relevance.