An epiphany

IMG_2644Those days of the Big Checks in Bangkok are in the past in many ways. Many years were punctuated by three monthly check ups, and then six monthly with more thorough checks annually. These were a Big Deal in my post diagnosis life. I was fortunate to have such thorough follow up from the end of the heavy treatment in mid 2010 until I left Asia in mid 2016. Another world, another lifetime, it often seems. Now checking is different in frequency and nature. The past is indeed a different country.

Every year in October, in addition to the three month or six monthly checks, I would turn up at the hospital for what Dr W fondly called the “Big Check”. He had explained to me at diagnosis, that once the active treatment was completed I would be called back for checks every three months for the first two years, and every six months after that until I reached the five year point. Then I would graduate on to annual checks. The three and six monthly checks would be lighter, but at the one year point I would additionally have a mammogram, ultrasound and any other checks indicated.

Those checks were a mixed blessing. I approached each round of checks with trepidation, and the annual Big Check with nothing short of dread and fear. I knew that I was incredibly fortunate to have a variety of bloodwork, physical examinations, mammogram and ultrasound and if indicated, further scans such as CT. I knew that if there were any nasty activities underway and any signs of progression or recurrence, there was a very high chance that these would be spotted during the Big Checks. And of course, that was my greatest fear. That there was some nasty malignant beavering away of cell multiplication out of view. Yet, alongside that Big Fear, there was the attraction of knowing that if the checks all came back without any worrisome results, then in all likelihood I was in very good health and the designation of NED (No Evidence of Disease). And NED is exactly in whose company I wanted to be.  If I passed through these major checks with no worrying results, then I would be rewarded with enormous relief and reassurance.  l could then breathe out and get on with some serious living until the next round. My first followup checks were in early July of 2010, thus by by strange coincidence my first Big Check took place in October 2010. Exactly a year from diagnosis. And also the start of the visible Breast Cancer Awareness month which was even present in Bangkok.

Those first checks set me on a path of appointments, blood taking and other checks regularly until I left Yangon in June 2016 to my new life in Rwanda, saying goodbye fondly to Drs W and W2, and the teams which had looked after me. We had been a team for 7 years and had been through a lot of hiccups and nastier moments together.

As well as the checks, my ongoing followup consisted of taking Tamoxifen once the active treatment was completed in the May of 2010. This was not a pleasant experience with its many side effects including the very nasty one which tried to do away with me altogether – the pulmonary embolism which appeared in July 2012. When I was first prescribed Tamoxifen, research and trials indicated that the prognosis was best when patients took the drug for 5 years. The prospect of 5 years on a medication with such heavy side effects is daunting. When the embolism happened I was taken off Tamoxifen immediately. And prescribed Femara/Letrozole. This is an aromatase inhibitor and works in a different way to Tamoxifen which is a selective estrogen-receptor modulator (the wiki link is need to explain that as I am not able to do so!) Femara is more usually prescribed for women who are post menopausal. It has just as many side effects, equally heavy and unpleasant such as joint pain, weight gain, fatigue, dizziness, increased cholesterol just to name a few and I was both thankful and frustrated about these “extras“.

As I was approaching four years of taking the hormone therapy Tamoxifen and then Femara, and almost able to touch the five year point when I would be able to stop, new research findings were hitting the breast cancer headlines. What an ironic blow to learn that women who took the medications for ten years had better outcomes than those who did not, or who took them for five years. I knew what was ahead before the next round of checks. And sure enough. Dr W2 recommended that I keep on taking the Femara. For an additional five years. Five. Whole. Years. That felt like for ever! Or until mid 2020 …

Leaving Asia and the attention of Drs W and W2 with the reassurance of the Big Checks, was a massive step out of a comfort zone which I loved to hate, and really valued. Moving to Rwanda, meant that I had an annual mammogram in Scotland around the time of the checks in 2016 and my unexpected return to Scotland in 2017 meant a very different approach to cancer follow up, particularly as I approached the ten year point from diagnosis. This involves an annual mammo and a letter to let me know if there is any need for follow up, and a separate check up with the breast nurse. No single day to focus on both with dread, and knowing that clarity would be provided. No bloodwork and tumour markers with my record and trends. Instead, lighter checks over several days or weeks. A very different experience, particularly psychologically.

This year, I had to juggle the dates around as my nurse appointment was scheduled earlier than the mammo so results would not have been available at the consultation. So with some phone conversations, and a house move all underway, it was agreed that I would have the mammo and then see the consultant prior to moving to a new area. This took place, ten years to the day from my formal diagnosis and surgery by some very bizarre coincidence. These checks are not nearly as stressful as the Big Checks in Bangkok because they do not include bloodwork so I have no idea if tumour markers are within the trend that was clear throughout the regular testing in Asia. Occasional testing of markers is not useful, so I did not miss the results, just the ongoing knowledge that these were stable. The significantly lessened stress of these checks is balanced by the limited reassurance. A little sigh of relief, but the underlying nagging uncertainty of NED status.

So after a very short wait, the  consultant invited me into his consulting room, and noted that I had had much of my treatment overseas, asking me if it had been Paris or Singapore? I began to explain …

The mammo result was unremarkable, happily and we talked through my general health and the worries that I always harbour. Then we talked about the Femara. I was fully expecting there to be some new research which indicated that results for women who took the medication for 15 years had better outcomes … and prepared for that news. To my surprise, he said that the latest research and analysis shows that there is no marked benefit in staying on Femara beyond 10 years. He also said that there was a kind of a ‘hangover’ of the medication as the benefits stay in the system for some time after it is stopped. This was the precursor to him advising me that I could stop taking Femara. After TEN YEARS. He asked how many tablets I had left before I would need a new prescription. I had around 3 months, and that would take me through to early January. “Then, I suggest, that you continue to take these until they are finished. And then stop. There is no benefit in getting a new prescription, you can stop when they run out”.

And  just like that, I was given permission and the advice to move forward by a giant step.

I have been taking this feeling of lethargy, joint pain, and general effort needed for everything I do for granted for so many years, I did not actually believe the day would come when I would no longer be taking this heavy, albeit probably life preserving medication.

And so around 20 days ago, on Twelfth Night, 6 January,  I had my own personal epiphany. The realisation that this ten year phase had come to a close. As I prepared to go to bed, I took my glass of water and the last Femara in the packet. Hopefully, my last ever Femara. The end of an era indeed.

3BC89D63-C41F-4E95-BF1B-9965DEC0D2F8

I am looking forward to seeing if there is any change in how I feel. Let’s see. One thing is for sure – I am bound to tell you.

Envisioning 2020 with a three word mantra

tapestry3

It was ten years ago, on New Year’s Eve in Bangkok that I first spotted that Tweet about three words which revolutionised my approach to the coming year from then onwards. It is no secret that this resonated immediately with me and three words formed with incredible clarity and haste. I am still quietly astounded how this practice has embedded itself firmly as I now embark on this process for the eleventh year running.

I am always astounded by how well my words serve their purpose, guiding, reminding and encouraging me through the year. This year has been no different and my mantra of “script, nestle and nourish” have been by my side through another year of transition. I have been reluctant to lay them gently to the side this year though. The transition has been far slower than I could ever have imagined, and I could quite comfortably take these words with me through another year and I did consider this. However, the prospect of this emotional and psychological review and cleanse is valuable and I again have found the process of identifying my priorities and the right three words one of enormous benefit. So, I will keep my 2019 words tucked away, behind my new words, reminding me that none of my words are ever discarded. In fact I believe that they build on each other, and I now have a wonderful foundation of words and mantras that remind me how greatly I have travelled since December 2009 and how much there is to be thankful for.

2010                Recovery, discovery and laughter

2011                Harmony, vitality and adventure

2012                Resilience, escapade and wonder

2013                Focus, treasure and design

2014                Dedication, integrity and flair

2015                Breathe, stargaze and realise

2016                Reorient, nurture and crystalize

2017                Emerge, explore and intend

2018                Search, settle and weave

2019                Script, nestle and nourish

These words tell the story of my life over the past decade. In particular a decade since my cancer diagnosis, but so much more than that. I can recognise each year and with it, the feelings and emotions of those times as much as the significant events in each mantra.

Before I introduce the mantra for 2020, the new year and indeed the new decade, I like to reflect briefly on those words which have accompanied me through 2019, “script, nestle and nourish“.

Script

Writing continues to play a key part in my lift. I have found a wonderful writing tribe in Edinburgh, and although I do not spend nearly as much time as I would like writing, this hour weekly provides so much more than a space to shut up and write. It provides friendship, like minds, new faces and encouragement. I still have my writing project alive, but needing an infusion of deliberate effort to move it forward and, dare I hope, complete it. I have set the path for the coming year by reconnecting with my writing mentor in a commitment to dedicating time and energy to this. Having my own space finally, and establishing a creative place in that is part of that commitment and motivation.

Script was also about being intentional in shaping my life. It meant putting effort into the things I wanted to change, and writing my own story. And that is also apparent in the other two words.

Nestle

This has been the central word to the year, appropriately in the heart of my 2019 mantra. The transition from overseas life to finding a forever home has been complex and my eagerness to finally settle in a space that I intend to stay in the very long term has taken long to realise. I finally found myself able to start searching properly in the spring of this year. This was both exciting and daunting. I knew in my heart what I was looking for – a quaint little cottage-type home, close to the city, easy to commute, in a nice neighbourhood with character and some history and tradition. Some green space and a place for a bird table and feeders. When I was looking for a place to call home in Rwanda, I put my thoughts together, and apart from a dearth of jacaranda and challenges in getting frangipani to thrive in Scotland the rest is incredibly apt.

My wishes were clear, and the search started in earnest. With it came the abrupt realisation that there was an incompatibility with many of these requirements within the means I had available. My search was wide, and weekends and some weekday evenings I would be on a bus, exploring new communities and potential homes. And there were very few which came anywhere near what I was looking for. The process was draining, but invaluable. I learned what was available and what were the key priorities for me. I knew which areas I needed to compromise. I came close to thinking about putting in an offer, but something always stopped me. I was not ready to commit, just in case the perfect home was round the corner. None of the 29 places I viewed were quite right and not how they were portrayed in the advertising. Camera angles are very deceiving and can make tiny rooms look cavernous. I had entered the year eager to settle, and now midsummer was approaching with no sign of my forever home. In early June, I arranged a viewing at another property, a quirky wee place, which looked really promising, and spotted that there was an open viewing at another place, a dear looking little cottage, nearby just beforehand so thought I would pop in there too while I was near. And it quite took me by surprise. It ticked many of the boxes that I knew were important to me, but I had to look beyond the fact that it needed a great deal of work to make it home. but I knew that the other option was more promising, so I headed to view it with high expectations. And it was also suitable, but I felt a sense of very slight, almost intangible, disappointment. It also needed work but had incredible character.

I decided that I would put in an offer. And with some deliberation and to-ing an fro-ing I decided to put in an offer on the other place too. The closing dates were adjacent, and I was almost frightened that my offer on the first would be accepted, as I realised, almost despite myself, that I seemed to be setting my heart on the little cottage. I was not disappointed that my offer for the quirky place was miles short of the one accepted. Now I had to go through the same process 24 hours later, but with a very different frame of mind. To cut a long story short, the process was not clear cut, but in the end on a midsummer’s day, that truly was the longest in many ways, my offer was successful. I was delighted. I knew I had found my home. I also knew I could not move into it until some essential work was done, but I was very much closer to nestling.

A month later, I had my keys just before I set off on my Voldemort trip, with the knowledge that I was returning to Scotland by train to the prospect of my own home and under my own terms, unlike my abrupt return two years earlier. This gentle train journey homewards was truly a “homecoming”. And a few days after the autumnal equinox, with the critical elements of the essential work completed. I was finally able to move in, unpack and begin to truly nestle.

Nourish

Now, the emphasis on nestling has probably indicated that while nourish has been an important guide, it has had to fit in alongside, “nestle”. Rushing around, getting ready to search, undertaking an extensive process of viewing and then readying my home to live in has nudged my focus on “nourish” slightly to the side. Not quite neglected, but it is not to be forgotten as I move forward to 2020.

As the day dawns on the new decade, what kind of 2020 do I envision? The past weeks have seen me pondering, contemplating the year ahead and how I want to shape it. As in recent years, I have travelled in different directions, playing with different ideas and words, reflecting on the aspects of the coming year which I want to focus on and I now have the words I feel will guide me forward. And the words which have emerged are:

Still, dwell and glisten

Still

My first word is “still”. Not the adjective but that beautiful verb which means to calm or become quiet. I feel the need to still my soul, my body and my mind. Much of 2019 as spent running around. A great deal of this was readying for the search for my home, those long weeks looking and covering a great deal of ground physically and emotionally, preparing to move and then starting to settle. My mind and body have not stopped. It is still to still, to allow myself to breathe again. It is time to quell my anxieties and focus on mindful and meaningful days. There is plenty to fill my time, I just don’t need to be constantly “on the go” to do so. Amidst this stillness, I believe I will be able to keep sight of what is important. The terrible pun would be to say this would be my 2020 vision.

Dwell

My second word is “dwell”. This feels the perfect way to guide how I settle in my new home and community with the definition “to become familiar with a place and feel happy and confident in it”.

Gradually I am shaping this as my home, while I trust, retaining respect and appreciation in the history of the home I have moved into. I am settling into a space which has an evident and warm history. While there is a natural pressure to quickly have all work finished and sit back, I am also happy with the gradual process that is necessitated. This gives me time to learn how I will settle into my new dwelling, bringing my eclectic collection of Asian, African and Scottish belongings and styles into this existing history. In particular, the well cared for garden contains so much history and life – plum, pear and apple trees, many flowers I do not know the name of, wild raspberries and gooseberries. A wise friend countered the main advice I had heard and counselled me “take time and sit in your garden, let it speak to you before you make any changes. It will tell you what to do”. Those words resonated powerfully. I am sure I will make some changes, but probably minor and these must be in keeping with the character of what is already in place. I can dwell in this space by being true to the garden and to myself. And wider afield, I am eager to make connections in this community. There is a book group, a writing group, a photography club and even links through a twinning arrangement. I look forward to dwelling in my community.

Glisten

My third word is “glisten”. It took me by surprise a little, as I had almost settled on either enlighten or illuminate when thinking of the wish to spend more time and energy shining a light on my creative pursuits. It was also articulating some of the wider context we find ourselves. In many ways these are times of polarity and negativity around us and it is important to have the courage to shine light in dark spaces. But then glisten arrived unexpectedly, and was perfect. It is more subtle, natural and everyday. It has the meaning of “shining with reflected light” and has an element of the ordinary and extraordinary about it. Most importantly, to me it emphasises cooperation and a relationship as two elements are needed (light and moisture) to make something glisten. Two simple, everyday elements that we overlook and take for granted, but which create something eye-catching and of wonder. How often are we taken aback by the twinkle of the sun on a frosty edged puddle, or the light captured in a raindrop? It is also about our attitude and approach. We all have light in us that shines, and means we all have the potential to make things glisten. This encourages me to be creative, solution focused and optimistic and to keep my eyes open for those tiny, extraordinary moments we can miss when our minds and thoughts are dark.

58D9B743-E955-49C1-B54D-E2ED044A5F65

Even in these short Scottish, winter days there are many opportunities for us to see that which glistens around us, and for us to be our own tiny light.

As the daylight starts to fade on this first day of the decade, I am ready to open up and gently place my three words for the year into the wide open world.

Still, dwell and glisten

C46799AE-6B31-4F08-8F1A-E5D789515C5E

Happy New Year and may 2020 bring you everything you dream for.

Another Sunrise

This morning saw a light frost, miniature ice shardlets glistening in the first rays of sunlight. I closed the door behind me, leaving a flower shadow painted on the wall by the morning light.
605DA4BB-35A8-421F-AB37-642F9DC064C6
Under a keen, blue sky, I passed cropped fields of sandy coloured stubble with their scatterings of hay bales, punctuated by deepening reds and rusts of the changing leaves. A Scottish autumn at its very best.
AB1B5A54-E662-4FA7-A6EB-D2B5B482B5FB

It was not like this ten years ago today. I was half a world away, if not a whole world. It was the end of a long and especially heavy monsoon and the Yangon I left behind was lush as the late afternoon flight lifted into the sky. An hour later, the sun was glowing red as it rested on the Bangkok horizon, pausing before it slipped out of view. Silently marking the end of another day, and another era.

It was late that evening when I heard the words that were to take life in an unexpected and unwanted direction. “This is highly suspicious of cancer” Dr W gently told me.

Ten years ago, this very day. Those words have echoed in my ears ever since.

There have been numerous sunsets and sunrises since that day, each one different and each one heralding an unknown day or night ahead. Some cloudier days when the sun has been hidden, and some bright skies like this morning when the sunlight throws promise and optimism on the coming day. This chimes somewhat with the path that life has taken since, and of course, before then. Some sunnier, promising sunrises and gentle, rosy sunsets. Other days, a stormy sky, hiding the sun or gloomy, troubled clouds shaping the mood of the day ahead and the challenges and surprises that arrive in our path.

On this significant Landmark Day, I am thankful to be here, and thankful to see the sun rise and set on an ordinary, extraordinary day.

IMG_2644

Blissfully unaware

The other morning, I was smiling at a Facebook memory of my early days in Myanmar as a post from years ago flashed on the screen in front of me. I had apparently been preparing to travel to the field, smugly noting that Grandmother’s suitcase was lying in the corner recovering from a field trip less than ten days earlier.

“poised to pack again – grandmother’s suitcase is, as, yet, blissfully unaware” I had announced to the world.

Wondering idly when that had been, I checked the date. My heart stopped, I had written this on 4 September 2009. The irony hit me hard. Only 19 days later, life had changed dramatically.

Checking back on my diary, I could see that I had left Yangon early on the Monday morning, 7 September. Grandmother’s suitcase and I had left home before dawn, with two of my colleagues to head to the airport for our flight to Mandalay. The flight had been smooth, and I had noted that I was becoming familiar with Mandalay airport, with its cavernous arrivals area, row of empty immigration desks and the one carousel creaking as it revolved with our few bags on it. I had been there only a couple of weeks earlier but it seemed that the landscape was even dustier than it had been then, the bougainvilleas holding on to their colours with effort under undignified layers of dust.

This had been the start of an exhausting but inspiring to Upper Sagaing in the remoter north of Myanmar and where few foreigners were allowed to travel.

028

From Mandalay we had travelled by train, arriving not long before midnight and spent the following days visiting project areas and working with our field based colleagues. I learned such a great deal, these early days of my job in Myanmar were such a time of constant learning and growing to understand the context and our work.

076110

 

041

We headed back down to Mandalay several days later, on an overnight train in a crowded compartment. From Mandalay we travelled onwards to another township. This time in the dry zone where we spent more days with colleagues and communities in our project areas.

259

We covered a great deal of ground, both in distance and our work. I had travelled by plane, train, car, bus, boat and even bullock cart to remote villages and townships gathering mosquito bites, dust and dirty laundry. Grandmother’s suitcase was clearly disgruntled at the indignity of this treatment – we were both travel weary but I was also inspired and motivated at the end of such a draining field visit. Another very early departure for the return trip to Yangon saw us driving through Nyaung U’s roads, deserted but for a long line of monks collecting alms as the sun start to throw its first light of the plains of Bagan.

627 d

 

I would be home in Yangon in time for lunch, with many a tale to tell, not enough photographs and a week’s worth of sleep to catch up just a couple of days before my visa would expire. The long awaited renewal had still not come through and I would not be not permitted to travel until it did.

All through that field trip I had been blissfully unaware of that I had been carrying an additional item of baggage with me. An unwelcome addition which had been growing and developing. It was just a few days later, in the shower, that I discovered the lump and life took a completely unexpected turn. I had been blissfully unaware that I had been harbouring three masses, two of them cancerous in my left breast.

It was 23 September 2009 when that blissful lack of awareness was so abruptly ended.

Ten years ago today, I entered a new universe. Ten years have passed, and I am still here. The collateral damage, be it physical, emotional or psychological has been considerable but there is an important message. I am reminded more than ever to carpe that diem. We all go about our days, unaware of what might lie ahead. There are challenges ahead, personal and global yet equally there are moments and people to cherish and treasure. We just need to pause and make sure we don’t miss what matters.

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.

africa

Disorientation

And so the sun sets on another week, and I find myself in a different continent.

sunset-porch-2

Under an African sky – in front of my eyes

I returned to Africa a week ago after an unexpected, and unwelcome reason for extension to my stay in Scotland. I should have returned two weeks earlier, after a short visit but things always take a surprise turn in that post diagnosis cancer world. I am fine, no nasty cancer surprises but I can attribute what happened directly to cancer.

So what happened, that warranted hospital admission and being unable to return for two whole weeks? A nosebleed, that’s what. Yes, a nosebleed. And one I blame unequivocally on cancer!

It started fairly innocently just before I had an optician’s appointment. One of a series of things to be done, while on home leave. The bleed would not stop, and reluctantly I had to cancel the optician. I pinched my nose, and waited patiently as the time for another appointment approached. The bleeding continued and worsened. I called the medical practice and was advised that I should go the Accident and Emergency Unit at the local hospital where they would be able to deal with the bleeding. The last thing I wanted to do, but with my history and being on blood thinners this was the correct and only course of action.

Treatment was not pleasant or nice, and for something as trivial-sounding as a nosebleed it was frightening to see how quickly a situation can become worrying. I was admitted to hospital and with the various procedures the bleeding was eventually staunched. I was allowed home the following day, with a strict set of instructions. No hot showers, no exertion, no flying or travel and the worst? NO TEA! That was a serious struggle. I have never craved tea so much in my life! But heat or exertion can re-start the bleeding and that is not a risk to be taken, so no tea and no immediate return to Africa.

How can I blame cancer? Quite easily in fact, the nose bone is quite clearly connected to the cancer bone in my case. Blood thinners were the cause of the nosebleed, and those blood thinners are a consequence of the Pulmonary Embolism I had, which was attributed to Tamoxifen. PE is a relatively rare but dangerous side effect of Tamoxifen. And of course,Tamoxifen is prescribed following hormone receptive cancer diagnosis. Thanks, cancer!

The sides and afters of cancer and its treatments continue to rumble on and we are reminded that even at times of NED (No Evidence of Disease) we exist with vulnerability and fragility.

I am enormously thankful that this medical hiccup has been dealt with relatively easily, but my confidence has again been damaged. I am approaching 7 years from diagnosis and am in pretty good health overall. Yet the fallout from cancer, while it might not be visible or evident apart from to me, is not to be underestimated. Life is fragile, precious and unpredictable. At the hospital, the ENT specialist advised me to be cautious and not to trust my body as it has let me down before. Interesting words from a doctor, validating anxieties and vigilance.

So I am pleased to have returned to my new life in Africa, though being in three continents in as many months has proved disorienting briefly. It is good to be able to look ahead with no immediate plans of long distance travel and to concentrate on my reorientation. My three word mantra for the year powerfully reminding me of my focus for the year. The time is right to seek to crystalize and settle now and I have a very clear reminder of my middle word – nurture – timely and so pertinent.

porch-sunset-1

I returned home yesterday late afternoon as the sun was sinking in the sky and I was treated to a spectacular sunset. And I was present in every sense to witness and appreciate it. With no thanks to cancer!

 

Lymphoedema? Seriously? Life following diagnosis is just not that simple……

Recently many changes in my life have been underway. One major change which has impacted significantly on me had been the closure of the place where I have been swimming in the mornings. I knew this would be tough, but it has had even more impact than I had expected.

The facility closed to members on July 1 but I was soon on home leave. Furthermore, rainy season always disrupts swimming plans. Every night my ear is always keenly listening for the sound of rain through the sound of the fan. If the rain is heavy, the swim is postponed. Sometimes a full week of postponed swims passes in rainy season.

yangon monsoon

 

Aung Min Gaung River 1Now that the rains are starting to abate, I should be able to swim more often. I need to make plans.

But the gap this year has been too long. Very few swims in too many weeks.

Over the past weeks, I have also been experience increasing pain in my left arm. Twang Arm. I mentioned this to my Doctor here in Yangon and he told me exactly what I did NOT want to hear. What I had not even told myself.

Just a few weeks before the 6th anniversary of my mastectomy and the grand removal of all lymph nodes in my left arm I  developed lymphoedema. These are not my arms, but a stock image of what it looks like.

lymphoedema

Seriously?  Yes, seriously. Sad Face. Angry Face.  ARE-YOU-KIDDING-ME? face.

I am pretty certain that there is a direct relationship between the lack of swimming and the intrusion of this unwelcome bonus condition.

So I am on a quest. As the rains abate, I am seeking out another option. You have to factor in a house move to my recent changes, so I am also testing out new geography and facilities.  I have already checked out one place and had a test swim. This is not quite so easy to get to, but it is a possibility. There are two great pools, a 30 metre and an 33 metre pool. I do not think there are any kingfishers and it is a great deal busier but that is life.

I have always been convinced that the almost daily swims from very soon after surgery, really played a part in keeping lymphoedema at bay. Now I am going to see if I can reverse this and at the very least prevent it from getting worse. It is mild at the moment, and I must stop it from getting worse. Oh and does anyone have any idea where and how I can get a lymphoedema sleeve in Yangon?

lymphoedema sleeveAs October advances with its array of messages around Breast Cancer, I want to add my own message, which is “it just isn’t that simple“. I am happy to be living with NED and want to stay that way, but life after diagnosis just is not that simple. Lympoedema is just one more bonus in the post diagnosis life, as I have discussed before. Thanks but no thanks cancer, indeed.  These bonuses include:

  • A digestive tract which remains sensitive following the ghastly gastric effects of chemo.
  • I have difficulties with memory too, my personal memory card is none too reliable and has particular dislike for. This is linked to  “chemobrain”- a level of cognitive impairment “thanks” to chemotherapy which is now more recognised and understood to be very real.
  • The pulmonary embolism which tried to get rid of me in 2012, and for which I still have to take blood thinners and undergo regular checks.
  • The failed thyroid, which again needs daily medication.
  • Peripheral neuropathy in toes and fingers. Not severe but enough to affect mobility and make me walk clumsily to make others notice. Enough to make me trip and fall too regularly.
  • Brittle and constantly breaking nails
  • Highly sensitive skin – which cannot tolerate sticking plaster or bandaids (depending on the part of the world you come from 😉 ), and which can sense the presence of a stray hair through several layers of clothing. This includes the extremely sensitive soles of my feet
  • Excruciating night time, and other time cramps.
  • Last and in no way least, is Twang Arm which remains seriously corded and which is now clearly laughing up its lymphoedema sleeve.

Again, I need to respond by stepping up my game and squaring up, no matter how exhausting this is.

I am not afraid to shout out that I HATE cancer, I HATE the way it continues to sneak in surprises and knock you when you are still getting getting back to your feet.

Life after a diagnosis of breast (or any cancer) just is not that simple.