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

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.

Labyrinthine

Another birthday has passed.  Nearly two months later. Yes, I am still here, breathing out slowly.

I am nervous about birthdays. My mother died on her 65th birthday and my step mother on her 75th birthday.  So every birthday is something to be anxious about.  I can only truly relax when I wake up on 2 August and realise that I have beaten whatever jinx it is for another year.

However,  this year has seen the stakes just edged higher.  Just a nudge.  A rather hard nudge.

In October 2009 when I was diagnosed with cancer, my mortality was thrust to the forefront of my mind.  My 50th birthday had been just a few weeks earlier. At first I believed I would be gone by Christmas, but as the surgery took place and the chemo followed, my focus settled on the next likely date.  My 55th birthday. That would make sense – 55 for me, 65 for my mother and 75 for my step mum. Not long, but long enough.

I had not realised how much my 55th birthday has wormed its way into my mind, but it had. the fact that this birthday would also be 5 years since the very memorable birthday where I paddled around Shwe Dagon in torrential rain and had photos taken of me which it would turn out to be the last photos of me which included my left breast, were every firmly imprinted in my mind. A world beyond August 1 2014 has been hard to envisage.

So you can imagine the relief at waking up on 2 August this year, a day after I hit the magical 55, and found myself very much alive and kicking! Still here! I journal sporadically, particularly when there is a compelling prompt or need to download, and on August 2 this is what I wrote in a little cafe:

“I AM ALIVE! I did wake up this morning and now, after a wander around delightful Echternach, I am sitting dipping slices of bread into olive oil which the monsieur has gently mixed with sea salt and herbs and advised me “this will taste delicious” And he is right. Accompanied by what I can only describe as real olives, neither quite black nor green “olive” colours but more a kind of aubergine hued, small wrinkly, asymmetrical rustic olives. They taste as fresh and as real as they look.

Alive and eating olives in Luxembourg.   Yes, this birthday had been unusual for another reason. This was the first birthday I had not spent in Asia since 1998! This year I sought out something a little different, and ended up in a small village in Luxembourg, having travelled entirely overland.

I left Scotland two days before the day, on the efficient East Coast train from Edinburgh to London, arriving at a Kings Cross Station which I did not recognise. It might have been only 2 years since I had last been there, but major renovations rendered the familiar completely unknown. I had an early departure the following morning, and an evening which saw my son and I staying out rather too late. We hadn’t seen each other since last year at the time of my father’s death, so our catch up was lovely if short. The following morning, we both left just after 6 am and he headed somewhere I could not keep in my mind, but where he would be working. I headed by bus, then underground before joining the long check-in queue for the the Eurostar.

lux 1

Soon I was bound for Brussels speeding past English countryside, through the tunnel, and through French and Belgian greenery. I always enjoy listening to the announcements shift in order of language, depending on which country the travel happens to be in. Before lunchtime, we were drawing into Brussels Midi Station and my little travel bag was being wheeled towards another ticket office.

If I had been yearning an easy journey, that was certainly what I got. In less than 15 minutes, I was leaving the Ticket Counter, clutching a return ticket to Luxembourg City and pulling the travel bag quickly towards to platform, where the train would depart from very shortly. Apart from a group of holidaying teenagers trying to party in the corridor and blocking the doors with their camping gear and crates of beer (most of which disappeared in the journey) the journey was uneventful. Three hours later, we drew into Luxembourg city, ready for the next leg of the journey, bus to the small village where I had booked four nights in a guest house. A village which had caught my eye because of a picture of the beautiful forest scenery, pulling me towards a peaceful, birthday escape.

When I arrived, the lobby area of the guest house was completely deserted. I had to struggle with my own cultural baggage. Too much reserve, which does not permit you to ring the bell for attention unless you wait a silly length of time! When I finally got over myself and pinged for attention, a woman came out of a nearby room, which I later learned was the kitchen, sideways, her head appearing first, bright red lipstick and blond hair which sat at a severe angle to her face, and wearing a surprised expression. Contradicted by the fact that she knew exactly who I was, which room I would be staying in and for how many nights. She also knew I had arrived by bus and handed me my key without any checking of my name or booking details. This was based on our joint assumption that we were referring to our email correspondence which had provided excellent advice on how to reach the hotel from Luxembourg City. The bus for 3 Euro, rather than a taxi for around many many more! Sound advice indeed. She then gave me a map and told me that I should walk round the village as it was too late to go the forest. “Tomorrow you will do the kilometres” she instructed me! “Tomorrow is my birthday”, I thought to myself “I will decide what I want to do tomorrow, and it might be kilometres, but let’s see!” She then asked me if I would be having dinner that evening, and understanding that this was a serious matter, I made the instant decision that I would. 7 pm sharp, she told me. She was very pleasant, but clearly a close relative of Sibyl Fawlty!

I soon came to realise that as well as travelling across Europe, I had also travelled back some decades in time and had landed in the 70s, in a very quaint kind of way. As well as ubiquitious smoking and ashtrays beside the toilets, I found the menu options similarly quaint and reminiscent of the 70s. The four course set dinner of an evening, was a journey back in time, and not for the faint of stomach! The style and character of the food is what could best be described as hearty. Enormous portions, dishes I had long forgotten about such as beef stew, salad with pineapple and cherries in it, trout swimming in a plate of melted butter and vegetable soups. The four courses included two starters, each of which would have been a perfectly adequate main course – such as an enormous plate of smoked salmon salad. The main for the first evening was a ratatouille of mutton with enormous chunks of tender meat, each one would have been adequate for my evening’s dinner. Breakfasts were similarly hearty – a selection of cold cuts, cured hams, pickled gherkins, delicious smelly cheese, nutty breads, fruits and a coarse, rich pate served with tea or coffee (the only hot item in the buffet). The waitress was also highly purposeful and made me smile when she expressed surprise and perhaps tinged with a hint of judgement when gently reminded by a couple that they would like coffee but had not yet received it. “Encore un café? Another coffee?” she questioned! Each of the staff addressed guests or customers in the their own language (Flemish, French, German, Dutch, Luxembourgish or English) based on some invisible but highly accurate sign.

The place seemed to be suspended in time in many ways. There was a very weak internet connection, only reachable from one or two chairs beside reception! Even more strange, was that I seem to be the only one who pulled out a laptop. I saw no tablets or even smartphone type devices in the establishment. The owner would pass me tapping away at the keyboard, uploading photos and communicating with another world. “Again working?” she noted, clearly rather puzzled! No one seemed to have either a need or compulsion to be reached or reachable, nor to take and immortalise a series of “selfies”. My fellow guests mostly seemed to belong to a fairly narrow profile. European, older than me by at least a decade, and mostly sporting walking sticks (as in going-for-a-serious-trek walking sticks and not helping-me-keep-my-balance-and-stop-me-from-falling-over walking sticks), hats and little backpacks with water and maps. The only concession to gadgetry seems to be a higher than to be expected ratio of Big SLR cameras – at least 2 per couple. The village itself was similarly quaint, and I was intrigued to realise that there seemed to be only two shops. One sold a plethora of cheeses, grape juice, collections of cow trinkets and fine wines. The other was a very stylish shop selling assortments of exclusive blown glass ornaments. I am not sure if it was possible to buy a newspaper and a pint of milk anywhere in the village!

So this year, the scene for my birthday was one of both the new and the unfamiliar. Once I had clarified that I had indeed woken up alive, I set about making the most of the day. I was eager to explore the nearby woodlands and forests to see if the reality would be as pretty as the internet images. I took my map and wandered off in the direction of one of the shorter, 5 kilometre walks with my camera, water bottle and comfy walking shoes. I nervously followed the signs and soon found the trail into the most beautiful woodland. I gingerly stepped into this new territory very aware of the awkwardness and fragility which is a very real part of my mobility following treatment and ongoing side effects. I walked slowly, but steadily, my eyes open wide, picking my way carefully.

The aspect which had particularly drawn me was the image of dramatic rock formations and I was delighted to stumble quickly on a labyrinth of such rocks. This is where I come into my own. I cannot follow an organised trail but have to “explore” on my own terms. Walking gently through the ravine formed by the rocks, I was spellbound by the textures on the rocks, the strange angles and the precariously perched trees on their edges.

lux 6

lux 2

Before too long, I happened upon a bench, sitting beneath a kind of underhang in the rocks. This was my spot. I sat myself down, took out my pen and paper and held them for probably an hour, just watching and listening. The sounds of the woodland, the breeze in the leaves, European birds, with their higher voices than their tropical cousins.

 

lux 9

Eventually, I wandered off again, through another set of rocks, with no clear idea of where I was heading, just being pulled by the curiosity of seeing what was just beyond my vision.

The daylight was starting to fade by the time I decided to head out of the forest and back to the guest house for another hearty dinner to celebrate my Luxembourgois birthday.

The following day, I caught the local bus into the nearby town, Echternach, on the border with Germany. I could see Germany on the other side of the river, and clearly Germany could see me too, judging by the number of times my phone cheeped with a “welcome to Germany message!”

Echternach

Echternach

 

Echternach

Echternach

The following day, day 3 of surviving being 55, I ventured back into the forest for more kilometres and many more wanderings in the labyrinthine rocks. I had set a small goal of finding the Siebenschluff, or seven gorges, and wandered off the trail many times on the way, drawn by my curiosity and butterfly-like wanderings.

lux 13

lux 4

 

lux 5

The weather which had up until then been dry, decided to change and I found a space underneath another rock while it was particularly heavy. Mostly though I was able to continue towards the Siebenschluff, embracing those gentle rain drops. My senses were accosted by an unexpected sweep of nostalgia when I realised that each footstep on the damp ground released the scent of European woodlands. A hint of pine and green foliage. A smell I thought I had forgotten, so reminiscent of the Scottish forests of my childhood.

lux 4

lux 14

lux 3

The choice for this birthday trip was perfect. I wander through labyrinthine formations and forests in the same way as I like to approach life, especially life post diagnosis. I want to explore, allow myself to be side-tracked into places which might be more interesting than the main path. Interesting, and also unknown. Navigating this post cancer terrain is very reminiscent of a labyrinthine landscape. I think that I am travelling in one direction, but suddenly an obstacle is in my path. I need to find another space, or just investigate a different way. Reaching the Siebenschluff was an achievement and a lesson. They were very different to my expectations, much narrower but no less dramatic. Some of the seven ravines were too narrow for an adult to pass through, little secret tunnelings. Others had well worn paths into the heart of the formation. I realised that the journey to reach them had in some ways been the fascinating part of the day. It was not long before I had moved onwards through more woodland and back towards the village and more familiar territory.

lux 12

I travelled onwards the next morning for a day in Luxembourg city before returning to London refreshed from my labrinthyine wanderings, celebrating being on the other side of 55 and marveling in the irony of being able to decompress from the intensity of a more 21st century life in a developing country!

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.

last rainsI 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

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.

The Blog Tourist!

I hate jetlag.  It makes my head fuzzy, my stomach confused, my sleep patterns unpredictable and I feel as if I am walking on cotton wool surfaces for the first days of jetlaggery. I also find it unsettling when I am back in the UK as my cultural references become more and more disconnected the longer I live on the other side of the world.  I think it is even harder for those around me when I am back as what should be familiar is confusing and I forget or do not know things which are routine and mundane to most but a mystery to me.

While I have been challenged by physical and geographical displacement in recent weeks, travelling across the planet and back again and enduring double jetlag, the blog has recently been on its own wanderings and dislocations.  Last week, it had one foot in China, one in the US, one firmly planted here and one spare! It is fortunate that geckoes have four feet!

In late July, just before my own feet trundled through Yangon airport and a variety of departure and arrivals gates, I received a message from my blogging friend Beth on Calling the Shots.  Beth asked me if I would like to join the Blog Tour on writing process.  This was an invitation I was unable to accept unfortunately.  The reason for this was because back in March I had been invited on this Blog Tour by a Yangon blogging friend, Cliff.  This was the same writing process tour and it resulted in a long process of luxuriating and reflecting in my own writing process and a very long post flitting from butterflies and backstories and a great deal in between!

The way the Blog Tour works, if you accept the “baton” is to use the following four questions which prompt reflection and discussion of our writing process:

1) What am I working on?

2) How does my work differ from others of its genre?

3) Why do I write what I do?

4) How does my writing process work?

As well as being a very interesting process, it is also very helpful to step back a little and work through these questions.  And then the deal is to pass the baton on to another blogger or two, or even three.  Now, I am sure there would be no repercussions if you were to take the baton a second time and I am sure that  I could have happily hopped on board again.  However,  having thoroughly enjoyed working through the question prompts at great length the first time round, a second run would undoubtedly have resulted in a very boring post! I declined Beth’s offer but looked forward to reading Beth’s post.

Although I would not be rising to the challenge again, in true butterfly style, my mind wandered off as it tends to do………… I wondered, where the Blog Tour had been and what its journey had been before it reached Beth.  Following my own post, I had followed its path for a few weeks until the various strands became complicated to follow and I found myself unable to keep track of the different directions it had headed in.

I had passed the baton on to Catherine and Marie who both wrote their posts the week after my post, in Australia and Canada. This was fascinating and I was delighted to watch as the baton moved forward.  From their posts, the Blog continued its tour to Audrey in Scotland and Francoise in France. Around the world it continued as a mix of blogging friends and new acquaintances took up the Tour Challenge.  It continued in different directions, and was already becoming hard to track.  I wanted to comment on all posts but I couldn’t quite keep up as it moved on to Jan and Ellen, who in turn sent it off again to Ronnie in Liverpool, and Renn on the other side of the world! In addition to zipping around so many different places, it morphed into different topics, some breast cancery blogs and others not.  But it disappeared from my view and I was left wondering where it had gone, and intrigued to learn.So I was delighted to see the Blog Tour had reached Beth and eagerly followed its path through Beth’s post on Calling the Shots, which directed me to  Booby and the beast, Joanna of Hello mo jo and Ann Marie of Chemobrainfog.

I was fascinated by the Blog Tourist wanderings and I started to try and trace its steps back, naively believing that I might find that it led back to one of the strands I had seen.  So  I started to look backwards, to the post which had introduced Beth and found  My decade of running, and   http://www.corbininthedell.com/  here.  These had travelled  from  Jill Cooks, via Just Biscuits who had accepted the baton from Mademoiselle Gourmande talking about Rhubarb tartlets and a Blog Tour.  I then landed on My simple delights – a blog by a Singaporean who has moved to Spain and i nearly headed off on a tandem (tangents are far less fun 😉 ) on a travelling blog, and when I traced further back was directed me to my part of the world with Life to the Fullest…………………

Indeed, I had been taken back on paths around breast cancer, and then into a world around running, gardening, growing fresh foods for and creative cookery in a whole world of food blogging which I had not know existed eventually even landing on a few blogs from very near my own front door.

The wonderful part of the Blog Tour is that the route is not linear.  If we pass the baton on to more than one bloggerista, then it heads off in so many different directions, multiplying and laughing as it lands in unexpected places. I was no nearer to finding if there was a joining point between my post and Beth’s and I realised that it was probably impossible (or at least very time consuming in a land of limited internet) to find out.

It was a journey which suits my butterfly mind so well.  My attention is taken, I float off in an unexpected direction and am intrigued and excited by what I learn before I tootle off in another direction.  Eventually though, I have to settle back and focus again on the here and now.  But for now, I have a mind which has been infused with a fresh zest and a bundle of treasures which I have newly learned.

lux 8

Thank you, Beth for providing the ticket which took me off on this unexpected journey, especially one which has involved no jet lag!