After five years…… time stands still

There’s nothing quite like a fresh, new sunrise the morning after a day of intensity, exhaustion and a peak of fear. And there’s nothing quite like being able to watch the colours change, and the shadows morph knowing that the previous days has not brought to bear the fears which you have been harbouring.  Good morning, Bangkok.

bangkok sunrise

The sun was shining when I left Yangon on Wednesday morning. Rainy season is weakening day by day, and the skies are blue although the air is still thick and oppressive.  The flight to Bangkok takes only an hour but on the approach, we had to fly through thick, angry clouds before touching down in a rainstorm.  How can the seasons be so different, when the distance is not so great?

If the clouds were gloomy, my mood was even more so.  The passage of time, even five whole years and seven days, just does not make it any easier. The Big Checks have been looming large and approaching all too quickly. In the days running up to the checks, I discovered a worrying connection between a strange twinge I have been having and cancer progression.  I the  departure lounge of Yangon Airport, I purged a mass of thoughts, spilling them into this outpouring. Writing continues to be my Xanax, until it gets too scary.

Thursday arrived all too soon.  I slept very badly, as to be expected, and felt rough and nauseous.  In my mind this was another suspicious sign. I showered, and slipped out of the hotel before breakfast, having fasted since the evening before. A bright pink taxi was to be my transportation to the hospital, despite trying to flag down a green and yellow one!  The driver was in his own world, singing his heart out along to the music on the radio, word perfect, but tone far less perfect.

Too soon I was closing the taxi door and walking through the glass doors, towards Counter No 2, a tight smile, stomach growling nervously as the team welcomed me like a long lost friend.  Bloods first.  I cannot get used to needles, but the phlebotomists are wonderful and soon filled three vials of blood.  Next I was packed off for X-ray, then mammo and then ultrasound.  Ultrasound is the ones which unnerves me most. I hate seeing the shapes on the screen, I dread the “click, click. click. click,,,prrrring” as the Ultrasound Doctor pegs the dimensions of the shapes she finds interesting, chatting to the nurse and slathering on more cold gel.  “Breathe in.  Hold. Breathe out now.  Again.  Again.  Again…..” My upper abdomen, the scar area, sides are all thoroughly scanned, and i catch sight of some shadowy, sinister figures, losing count of the “click, click, cick, click…. prrrring”, over and over again.  It must be trouble.  So many shapes to peg, so much going on.  There must be cancer everywhere.  I can’t bear to think about it, but if I don’t then I won’t be steeled to hear the review from the oncologist later.  I can’t be niaive like I was the first time, missing all of those clues. Since then I pick up clues from every whisper, every comment and every averted eye. “Are you seeing Dr W today?”, the Ultrasound Doctor asks? I swallow before replying that, yes I am.  I interpret that as another silent clue that all is not well.

It seems very sudden when she stands up, tells me that she has finished and I attempt to wipe all of that cold stick gel off and head to put my clothes back on.

Next are the vitals, weight, temperature, oxygen whatsits and Blood Pressure.  I know my BP is high.  I am terrified.  I have hours and hours before i know what the scans are saying. The nurse checks the monitor, alarming me with her “Huh?” when she sees three red questions marks where the BP reading should be. She looks at me in puzzlement, not quite sure why the machine has decided to express an opinion!  She tries again.  At least there is a reading this time, but yes, it is high.

The morning is half way through, and next is Dr A, my endocrinologist.  I really must look that up one day.  Endocrines.  They must be important.  I wish I knew what they were. No need to see the nutritionist this time, she signed me off with my false 5 kilo weight loss!  Ironically, I have lost another two kilos, but from the correct weight of last time, not the wrongly recorded weight which caused her excitement!  I am not complaining! I am now 4.5 kilos down over 6 months.  Not a great deal in the big scheme of things, but it is a buck of the trend, and that is actually a really big deal for me as I battle the side effects of the smorgasbord of medications.  He notes that my bloods are mostly ok.  Kidney and liver function good, (really?  liver function is ok?  that must be a good sign???_ Haemoglobin slightly up.  But so is the sugar, just a smidgin but edging ever closer to that diabetic range.  However I realise that despite the direction towards diabetes, I seem to be at least slowing that.  Eating habits and exercise must be helping.  But then he highights the cholesterol.  That is again slightly higher than before, the trend again consistent increase.  So ironic, that since switching to femara cholesterol has become a problem.  No longer do I have “healthier levels than Dr A” as he used to tell me.  No, he tells me that it is time for me to start medication to address this as it is not responding the eating plan.  Sigh.  Yet another med.  At another time of day. He also notes that one of the tumour markers has gone up.  It has been hovering about 9 points above the reference range, again since the switch to femara.  It has now gone up another 6 – 7 points.  A bit of a jump.  This is not something he takes care of, he will leave that to Dr W. The last time Dr W saw a rise in that marker he sent me off for CT scans (HATE them) and a bone scan. He waves me off and asks me to come back in 3 months to check on the bloodwork.

We are approaching lunchtime, and I have a long wait until the review appointments with Drs W and W2 to review the results and find out what is going on.  It is far too long to sit waiting, with a mind which is flitting along a spectrum from “it is going to be all right, I always find this wait awful and then I learn that the worries have been unfounded right through to – those shadowy shapes are bad news, the tumour marker is an indication, the other signs suggest that there is really something to worry about. It veers far more towards the frightening scenario than the reassurance.  I really fear that these are my last hours before I hear more life-changing words, before my universe pauses and shifts out of alignment and into a parallel universer in the way that it shifted 5 years ago.  I have to leave the hospital and distract my mind.

The ideal task is to try and find the next Book Club selections and I head towards the Siam Paragon  Mall.  Paranoid, that’s the Mall I am visiting. I head on the sky train, but the time is passing so so slowly.  I try to browse in the bookshop but it is impossible.  Eventually I track down one of the books, but my mind is unable to focus on anything and I know I am likely to lose my bank cards, walk out of a shop without my belongs, or worse, without paying, I am so distracted.  I try settling down with a cup of tea, pouring cup after cup with refilled hot water, and jotting down notes.  I form a fragmented setof notes which I believe will make a poem.  The waiter is called October.  There is a piano which has no pianist and is playing old Gilbert O’Sullivan numbers.  I know the lyrics.  I hope I am not singing them out loud. Friends send messages of support and the tears which are too near the surface have to be physically restrained.  I see to be there for hours, but the time just will not move.  Eventually I pay my bill and leave.  I am wandering past shops with no idea what they sell, when I realise that one of the waitresses has run after me, calling to me.  What have I done?  Did I leave my belongings behind?  She waves my favourite pen – I have left it on the table.  It must be time to head back to the hospital before my distraction causes something more serious.

Back in the waiting area, I try to read but there is no point in turning the pages, I can’t comprehend the words of even this light novel. Every time someone walks past my head involuntarily inclines as I see if it is Dr W2, my oncologist.  Eventually I hear a voice behind me, saying my name.  He has arrived, through another entrance and has spotted me sitting waiting. Within moments he calls me into his consulting room.  My stomach twists, and I struggle to control my features.  I walk into the room.  The wait has been so long but I just don’t know if I am ready to hear what he has to say.

Physical exam first and he is concerned by bruising.  The warfarin dosage is a little high, it seems. He doesn’t notice my flamboyant toenail art. It is always a good sign when he comments on my unorthodox nails, it means he is not worried about the results.  I will him to notice the colours.  I sit down, and wait to hear what he will say. In my mind, I wonder how he will tell me bad news.  Dr W was the one who told me of my original diagnosis, and Dr W2’s style is very different. He is reading the reports, I can’t bear this.  Eventually, he tells me that the scans are mostly fine.  The mammo is BIRADs 2 which is as good as it gets for me. He is looking at something in the X-Ray but eventually says he thinks it is ok.  The ultrasound shows some cycts on my liver, but not worrisome.  He looks to the tumour marker.  It has been raised since the switch to Femara but this is a bit of a jump.  He says it is not immediately alarming, especially with the other scan and blood results, but he feels that 6 months is too long to go without reviewing.  He wants me to come back in 3 months.  I knew in my head that even if the checks were all clear then it would be unlikely that I would be sent off for a full year, as happens at the five year point, but 3 months represents something between “NED and no reason to worry” and “houston we have a problem and I am sending you for SC/bone scan/biopsy or some other procedure”.  It is a kind of halfway house.  Dr W later reviewed me from his surgeon perspective and was less worried than Dr W2 by the tumour marker. His first question is always “how long is it now?” and it was comforting to reply “five years”.  Five whole years and seven days since I had sat in his consulting room and he had told me “this is highly suspicious of cancer”.  And this seemed like the right time to give the gift I had brought for him, Dr W2 and S (the liaison manager) – all of whom have played such a role in this cancer experience.  It was particularly meaningful for me to give Dr W a copy of Dragonfruit, and showed him the words he had spoken.

It was nearly 8 pm when I finally left the hospital, tears still so close to the surface, a combination of exhaustion, emotional depletion but not tears of distress from hearing unwelcome words of worrying results.

I have said many times, that the mood when I leave the hospital after these checks is not one of elation but one of utter exhaustion.  I feel numbness and struggle not to weep.  I am not complaining, just telling it how it is, or how it is for me.  This is about as good as it can get.  If you asked me what would I really want from the checks it would be easy to answer. In an ideal, unreal world I would want to hear that there were no funny marks, cysts or wibbles for the scans to pick up.  Low tumour markers.  Healthy bloodwork which means I could come off some of these heavy medications.  And if we are being imaginative, some magical reversal of the gradual progression towards diabetes and raising cholesterol and disappearance of all of the side effects which make me awkward and lumbering.

But for now, being released back into the world for the next three months, being able to plan for the weeks ahead, and watching the Bangkok sunrise are more than enough.

It’s all in your mind

Written on Wednesday 8 October, Airport Departure Lounge, Minglardon International Airport, Yangon.  Travelling to Suvarnibhumi Airport, Bangkok.  Silently willing the upcoming monitoring oncology tests to be reassuring.

“It’ll be fine. Trust me. I know.”

Words of intended reassurance, which make me crumple. I’m sorry but actually you don’t know. I don’t know either. Yes, I know that seems odd, how can I not know what is going on inside my own body. Yet the truth is, I don’t know. Nor do the doctors until they carry out their routine, or not routine, tests. Only then will we know if it is fine or not.

The reality is that not only do we not know if it is “fine” or not (do I get a prize for the highest number of negatives in a sentence?), but we do not have control over whether it is fine or not by our attitude. I can neither keep cancer at bay by a jolly positive attitude, nor entice it by fear and anxiety. My attitude plays a part in how I live through cancer, not how the experience will play out.

The other reality is that no matter how we try to keep our conscious thoughts in rein, the subconscious can play very clever games.

This morning, I was sitting on my travel bag, trying to persuade the edges of the zip to meet before snapping the padlock shut, picking up my passport and ticket, and checking that I have my bank cards for the umpteenth time since breakfast. I had a last quick peek at the world before I disappeared offline for a few hours and was stopped in my tracks by a Facebook status update from Liz of Paw Paw Salad, one of my online BC blogging friends. She is also facing her checks (next week) and has been making Very Deliberate Efforts to Not Think About Checks. However, her subconscious had kicked in and she described a dream which could have been one of my own. She had been at the hospital in her dream ………..

The next review by my breast cancer team is coming up very soon, and I am determinedly Not Thinking About It – but my subconscious hasn’t got the memo. Had a dream last night where I was at a huge, mysterious hospital at which my (lovely, distinguished) oncologist was only going to be available to see patients for one day. I knew he was worried about me – I just didn’t know why. I then proceeded to: (a) meet with friends off the premises while waiting for my appointment, letting time stretch on until I realised it was getting dark and I was hopelessly late; (b) have a gazillion action movie adventures trying to run back to the hospital with various walls, ladders, and other impediments in my path; (c) bump into said oncologist in the corridor where he was speaking with some eminent colleagues and make a Wiggle joke about the skivvie he was wearing, thus imperilling his willingness to speak with me (!!!), and (d) realise I’d left my handbag and sandals (!) in a distant ward of the labyrinthine hospital and that I simply had to find them before my appointment. I woke without ever seeing the Prof, and feeling more wrung out than when I went to bed. Good grief.

I know these anxiety dreams so well. There is a pattern to mine and they are particularly creative around the time of upcoming checks and also before (particularly long haul) flights. Travelling to Bangkok for checks combines two anxieties for exponential bonus effect. Not difficult to interpret! Mine are not set so often in hospitals, but in airports, and also in places where I am trying to pack and depart for the airport. But all of them are labyrinthine! My checks always begin with a flight. I am writing this in the departure lounge right now. Attempting to take control, and manage those thoughts. A vain hope, but worth an attempt.

In another situation or context these dreams would be amusing and they are most definitely creative. I dream that I am packing but the case is filled with all of the wrong things – other peoples’ clothes, papers, even food shopping from the supermarket! And I am unable to find my own belongings. Or passport. Or I don’t know the time of the flight and I can’t find my ticket to check, so I do not know what time to leave for the airport. Or I just can’t quite work it out. I start from the time of the flight and subtract the necessary time to check in in advance, then take away the travel time plus a margin for traffic and delays.  And I have forgotten what time the flight was and have to start over.  And over. And over….  Once I even dreamed that I had to accompany a close friend to the dentist on the way to the airport. I became extremely agitated while she was having treatment because I should have checked in ages before and the departure time was approaching! Oh and then the airport. So many corridors, stairways and procedures to get through before check-in. I have had to climb escalators which had no solid ground at the top. I have had to sit at a coffee bar drinking coffee I don’t like, sipping slowly as it is far too hot, while the check in desk is closing within my sight. In that dream, I was not allowed to proceed to check in until my coffee had been consumed and paid for. I have had to walk miles along carpeted corridors to get to another terminal building which is not signposted and impossible to find. And the other night I dreamed I was on a Qatar Airways flight (how specific is that?) and takeoff was aborted. For some reason, I had to get out of the plane on the runway and walk back to the departure lounge. No one else did, just me. Have you ever realised how long a runway is? This one was like a dual carriage way and miles away from the airport building. Each time I wake up exhausted, stressed-yet-relieved and there is a tiny part of me which is quite impressed at the nonsense I can manufacture!

I have eventually realised that in fact, the airport in my dreams is exactly that – one entirely of my own fabrication, yet intriguingly it is familiar and consistent from dream to dream. I originally believed it was Heathrow or Bangkok but it bears no relation to the reality. It is purely my own creation. My very own virtual airport. And if I never visit it again, I will be extremely happy!

So no matter how much I try and restrain my fears and anxiety in the light of day, the brain keeps on processing and whirring and spits out the most incredibly detailed interpretations of these fears when the darkness falls.

My fears have been cranked up an unkind and steep notch in the past few days. Capt Paranoia, or cancer, has played a particularly nasty trick. On Sunday morning, I attended a very interesting session in Yangon for General Practitioners to enhance their awareness and understanding of cancers. There were a number of presentations highlighting the most common cancers and their key signs and symptoms. Breast cancer came first (this is how I have connected with the Foundation which is working in this area – more about them in another post), followed by ovarian, colorectal, lung, oral….. As a lay person, there is always the twinge of worry when you see lists of symptoms but I was shocked into a cold sweat when I saw the list of symptoms for cancer in the liver. I mentally ticked off symptoms I had not realised were connected to the liver. Last week, feeling uncomfortably full after a meal. That funny little twinge I had been feeling off and on under my right shoulder blade. Symptoms which are incredibly specific. My mind did its own “sift and search” function and spat out the suddenly remembered detail that I have nodes on my liver, noted during previous CT scans which have remained unchanged but monitored. Have these nodes developed sinister cells? Cancer in the liver. That is a whole new ball game. One I don’t want to play. I am in that limbo space now waiting for the checks. Can these symptoms be caused by other things? Or am I entering a very new and feared territory? One thing which I am thankful for, is that I already have these checks booked. There is already an upper body ultrasound booked as well as other checks. I am prepared for CT and bone scans as it has been two years since the last ones. Oh how I hate CT scans, but they do tell a full story. I don’t have a horrendous wait, not do I have to think through a “do-I-go-or-do-I-wait-and-see” decision. Wait and worry while this could be nasty. Or speak with my GP and find I am overreacting. (not that my wonderful doctor ever tells me that – he either quietly reassures me, or asks me if I have my passport in my pocket!) This could not have been timed better in fact. Routine checks that will reveal whether this is cancer reappearing or whether it is all in my mind.

When I arrived at the airport this morning, I pushed my travel bag, laptop back and handbag onto the security screening machine, and walked through the twinkling, screening frame towards the frisking security station. As I went to step onto the raised block I slipped. I didn’t go down, but just slithered momentarily. Glancing down, I realised that I have been so preoccupied that I left home in my indoor shoes, affectionately nicknamed my tsunami sandals (another long story, but I associate them with protection). Those sandals never leave home now, they are too precious and besides they are hardly appropriate formal footwear. Happily they are not quite “slippers” but still I delved into my bag and pulled out another pair for the flight. But my mind has already made its own interpretation. My slippers have come with me to look after me and remind me of other dangerous situations I have been in.

The thing about cancer is that while it is very much a physical disease, it pervades the mind in the most sinister of manners. It causes such torment and torture and brings those expressive dreams.

Only time will tell how much of this is in my mind. But all of it is ON my mind, and that is that nature of a cancer diagnosis. shadowselfie on mind

So please, don’t tell me it will be fine. Only the tests and the Doctors can do that.

After Five Years

I cannot quite imagine how this roller coaster cancer ride might have been if I had been diagnosed years earlier. Not necessarily in a world before the internet, but perhaps in a time when it was not such an integral part of life and particularly before social media became more common than chatting to your neighbour. Back in the day when having a PC in your home was the ultimate in connectivity, and when we used to store our data on those unreliable floppy discs. How life has changed.

I know that life in this post diagnosis world would have been much more difficult for me without a major online dimension, even although it is hard to imagine just how that might have looked. From the time of first fear and concern, when I entered into an unhealthy co-dependent relationship with Dr Google, through a process which saw me using information forums and connecting with others going through treatment and similar paths. From the moment I closed my eyes, held my breath and clicked “publish” on the very first post of this blog. Through a process which saw me connecting more and more with the developing online community, discussing the most personal of medical details with “strangers” on the basis of trust and solidarity, crying when new found friends were taken, venting at injustice, inequity and instances of stupidity. For me, the internet and social media have played a major part in my cancer experience. An important element of that is of course that I am in a country so far from my origins. Where the medical experience is not so different, but the wrapping is unfamiliar. Language, cultural beliefs, non-medical support and even the availability of non-Asian wigs add layers of complexity when navigating a new and frightening terrain. Of course, this is individual and the choice which has worked for me. I have close friends who have gone through this similar path and had very different levels of engagement with the online world. It is not a case of what is right or best, but which approach works for each individual.

And for me, the online world was what made the difference.

Through this online community, I have connected with (mostly) women blogging through breast cancer and as with any friendships, some resonated particularly. I remember early in 2011, being directed somehow, to a blog called After Five Years. Very quickly I became an avid follower of Lauren’s writing. As the title clearly says, this was a blog about life five years after diagnosis. When I first started reading Lauren’s work I did not realise that this would become a full year of weekly posts, exploring a plethora of aspects of breast cancer, and its fallout five years later. I loved Lauren’s exquisite writing and thought-provoking insights. I could hear a southern drawl when I read her words and she brought a wisdom and understanding of great depth, in a way that was easy to absorb. I used to wait for the “ping” on my Twitter feed on a Sunday evening on my side of the world, to tell me that Lauren’s weekly post had just been published, and I would rush on over to read it.

So much of Lauren’s work resonated – fear of recurrence, anxiety and stress through follow up scans and checks, venting over lack of understanding and sensitivity of others, the burden of a cancer diagnosis on those around us. I realised the other day that I had adopted one of Lauren’s approaches when I shared my fear that I had “toe cancer” following some sudden twinge.  This was borrowed from Lauren’s experience of “thigh cancer”. I can share a fear in a way which makes people laugh instead of adopting an embarrassed or dismissive expression if I describe my worry about “toe cancer”.

However, while a great deal did resonate, there was one Very Big Difference between Lauren and me. The clue is in the title of her blog.  While I had newly emerged from that year of treatment and was in an early recovery stage, with fuzzy clumps of cotton wool hair shouting CANCER loud and clear, Lauren was a whole five years from her diagnosis. Five years seemed so far away, in some kind of far off and safe place. I was an infant in the first weeks of Kindergarten and she was a prefect at the Big School. I could not imagine, and was frightened to think of a time so far ahead as after five years.

Yet here I am. This evening I will step over what is seen as an important line in cancer terms, into the after five years. Late in the evening of October 2 2009, Dr W gently spoke those words which were to have a greater impact than any others any in my life that I can think of. “This is highly suspicious of cancer”. Today is the day which has become my “Cancerversary” even though the official diagnosis came three days later. This was the moment I stepped through a set of swing doors into a territory I did not want to be. A set of doors which close behind you and will not let you back into the place you have left.

Early in my treatment, I remember apprehensively asking Dr W about life beyond the immediate treatment. He explained to me that once the rounds of chemo and radiation were done, and if there had been no regression, then I would be recalled every three months for follow up checks. At the checks which were timed around the anniversary time of diagnosis, there would be a more in depth monitoring which he calls the Big Check. If all is well around the two year point, I would graduate to six monthly checks. And at the five year point, again unless there is any reason for more frequent review, you are released into a world of annual checks. I remember listening avidly as he explained a life beyond the one where treatment and appointments drove every other aspect of life, and felt a quiver of hope that there was a future, a tomorrow and that one day life could be different. It felt incredibly far away, but knowing that such a time could exist provided a wonderful boost. My own path has differed a little to this, due mainly to the embolism and its accompanying bonuses.  I reverted back to 3 monthly recalls for a bit and I do not expect to be waved into the distance for a year if all is well next week. Particularly while there continue to be little extras and while the endocrinologist continues to call me back for three monthly reviews.

I have approached this five year benchmark with mixed feelings. I cannot truly breathe out and say “after five years” out loud for at least another week. Because there is an unwritten, unspoken expectation in there. After five years with no recurrence, is wrapped up in those words. And I know I cannot even think that while the appointment slip for my Big Check is sitting in an envelope with frightening words on it such as “mammogram, ultrasound of upper abdomen, chest X-ray, blood work for CEA, CA 153, (tumour markers) PT/INR (for the embolism) and a range of other tests. The appointment slip holds me in a limbo for at least seven more days, with its bold 9 October against the various tests.  I have to get through each of these, without any “flags” for follow on tests, such as bone scans or the dreaded CT scan. I have to wait, holding my breath as Drs W and W2, my surgeon and my oncologist review the scan results and I wait for the announcement that all is or is not well, that there are or are not worrisome signs which need to be investigated further. Only if, and when nothing sinister is revealed can I close my eyes, and say after five years out loud.

There is another dimension to the after five years which I really need to articulate. That relates to the widely held belief that five years represents a magic line, when you step from a world of shadow and darkness into a bright, shiny world twinkling with some kind of protective fairy dust, shaking off any fears or anxieties. That after five years means CURED. Out of the woods. Cancer free and no more need to worry. Survival to five years suggests that you can relax, as it won’t come back after that timespan. With many cancers that is the case, recurrence after five years is so unlikely that you can be considered as near as you can be to “cured”. But breast cancer is one of those sneaky, deceitful cancers that can lie dormant for years and even decades before it decides to reactivate. Around one in three of those diagnosed with an earlier stage cancer will go on to develop metastatic breast cancer. Some cancers are just wired that way while others can be eradicated by the gruelling treatment. The thing is, we don’t know which ones are programmed to destruct and which ones can be truly banished. We live with the knowledge inside us that our cancer might come back, even though we can be living with NED for years.

For me, after five years is an important milestone, not because I can skip off into cancerfree land, but because it represents a serious chunk of time. Half a decade. And half a decade, when you have heard the cancer words and stared mortality right in the face, is a wonderfully long time. Half a decade brings a perspective to living beyond diagnosis, which is impossible in the earlier days.

So if you ask me how I am going to celebrate my after five years, please understand that I am not being negative or defeatist when I say quite clearly that I don’t want to celebrate. This is not a celebration. It is, however, a time for thankfulness even before the Big Checks of next week. There is such a difference between celebration and thankfulness.

I am thankful that even though my cancer was advancing, that it had not travelled beyond the lymph nodes. I am thankful that I have access to care and treatment of the highest standard and a wonderful medical team. I am thankful that I am surrounded by support and love of family, friends and colleagues and an online community. I am thankful that despite a rocky medical road, particularly surviving a pulmonary embolism and living on a cocktail of ongoing meds, I am in reasonable health and strong enough to embark on gentle adventures and visit new places. I am thankful that my own changed perspectives and priorities have galvanised me into a changed lifestyle to achieve life goals NOW and not let these slip from view. I am inordinately thankful that I am able to continue life and work in such an inspiring and fascinating environment.

It is also a time of unexpected and intense emotion.  I was blindsided by tears before breakfast this morning.  I shed surprisingly few tears at the time of diagnosis and through treatment.  Why I crumbled this morning, I don’t quite understand but I have a game face to find before I set about an ordinary day.

Scotland 2010 171

Of course I have no idea what is ahead, no sense of whether the Big Checks will bring a new, unwanted meaning to after five years if there is anything untoward in the tests. Of course I am acutely anxious and afraid of the checks. But I do know one thing. Today I have reached my after five years and I am still here to keep telling my story.

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.

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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.

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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.

 

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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.

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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.

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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.

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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.

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