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.

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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

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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.

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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

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