Captain Paranoia

He’s back!  I woke up in the night this week and there he was, on my pillow, sitting cross-legged, feeding snippets of paranoia into my mind through my ears!

I felt my stomach clenching, as the fears rose to the surface.  I am always quick to feed a worry and Captain P knows this.  He was in his element, planting a snippet of suspicion in my mind and watching it gather speed and make me jump.

I overdid the treadmill in the gym a little the other day and have a pain in my heel.  I also bumped my shoulder against a van’s wing mirror a few days earlier and have a tender spot on my shoulder.  Add to that the combination of dark, scary, night time hours and voila – there is Capt P whispering “bone mets” in my ear.

I know that this is his peak season.  I am only 2 weeks away from the next round of checks so this is the most difficult time mentally.   I have already heard those “you have cancer” words once.  I know it can happen and I know I am at risk.

So who is this Capt Paranoia who is part of this post diagnosis life?  Does he warrant a whole posting devoted to him?  Yes, I believe he does, so that we can combine forces to send him packing when he tries to come visiting.

I am not able to take the credit for creating Capt Paranoia.  I borrowed him from a friend, and have seen him discussed on some of the discussion pages of Breast Cancer Care.  I have developed him in my mind though, into a kind of anti-hero.  In my mind. he has appalling dress sense, with an orange polyester sweatshirt with “The Captain” on its chest, and bright blue leggings and matching cloak, both of which clash terribly with his sweat shirt.  And of course, he has the obligatory underwear over his leggings and his untidy hair smoothed back with Bryl Cream.  Not the kind of guy you really want to find sitting on your pillow!

This personification (as insulting as possible) helps me to compartmentalise the fear and try and put it in its place.  In a corner.  Preferably the “Naughty Corner”

I have been developing ways of minimising Captain Paranoia’s activities.  My favourite is to play memory games in the middle of the night when I cannot sleep and worry comes my way.  Perhaps they are senility games.  I save up little puzzles, especially little exercises of trying to remember certain things from my past which I can’t quite bring to mind.  For example, the surname of a colleague from 20 years ago, the name of the band who sang a particular song in the 70s, features of a town I have visited many years ago………  I love this kind of puzzles and they are not new to me.  When I find that some detail is evading me, I love to ponder and puzzle over it until finally I retrieve it from the very dusty shelves in my memory bank.  Occasionally a detail may elude me for weeks, as was the case a couple of years ago.  I had been trying to remember the surname of a colleague I had worked with in the 80s and search as I might I just could not remember it.  Incredibly, when I was back in Scotland several weeks later, I bumped into him in Glasgow’s very busy Queen Street Station on the only day that I passed through Glasgow!  Happily I was able to solve that puzzle with his assistance because I have a feeling that it was not going to come back to me ever without some help.  I recently had another puzzle which kept me going for ages.  There was a tune which I just could not identify, and try as I might to hum it and retrieve the lyrics for a clue, I could not get more than a few disjointed and unclear words.  This one lasted for months and was finally solved when I was last in Thailand.  I don’t have a mobile phone here, but I do in Thailand and when trying to change the ring tone, I suddenly realised that the evasive tune was the ring tone on my previous phone!  No wonder I could not find the lyrics.

Happily when you get to my age, there are plenty of little details like this that you can’t quite retrieve.  So there is plenty of material for me to use in the dark hours when Capt Paranoia is trying to elbow his way into my head.  That is why I was lying awake in the early hours this morning, mumbling tunelessly that old number “tie a yellow ribbon round the old oak tree”, amazed that I seemed to remember all the lyrics (a dangerous confession I know) and trying to remember who on earth sang it!  It defeated Captain P and I eventually dozed off again with the lyrics going round and round in my head, trying to pin down the name of the band which was responsible for making it so popular so many years ago.

I have realised that this is a good strategy which I can use against Capt P from now on.  I will make sure I have a stock of these puzzles.  Luckily that is not a problem thanks to chemobrain’s support in fuddling the memory chips.  And I will make a conscious effort to search and solve these in a way of distracting my mind from the mean stuff that he is providing.  This is a tactic which I think will help in what is going to be a long relationship and tussle between myself and Capt P. I know that this will be a protracted connection thanks to this ever present fear that the cancer beast will launch a comeback.  I also know that it won’t always work.

This is not the same as denial, and vigilance is critical.  I know that I have to remain proactive and seriously check anything which is worrying as opposed to worrying about something which is easily explainable, or quickly disappears.

The thing is though, I have to be right EVERY time.  Capt Paranoia only needs to be right once. And that is his trump card.  That is why he is able to keep reasserting his presence on my pillow.

On the positive side?  Going over and over “Tie a yellow ribbon” in my head kept producing a cryptic repetition of “Dawn”.  Unconvinced, I googled the song in the light of day and guess what?  (I am sure you know this already).  We have to thank Tony Orlando and Dawn for bringing us this classic.  Now while I am sorry that Tony was far from surfacing in my mind, I was quite delighted that Dawn made itself appear in my mind before the dawn itself did.  Now is that a victory against senility, memory loss and Captain Paranoia?  I think it just might be!

No time for cancer talk!

This week has seen my “other life” almost squeeze out the cancery bits. How’s that for progress ?  :)

So while the embryonic bloglets are still taking shape, I have uploaded some photos from the garden, lanes and hedgerows around here onto the sister blog Feisty Blue Gecko in Images.

This is also a conscious effort to keep my mind from being hi-jacked by Captain Paranoia as I am approaching the next round of checks.  But that is not up for discussion today!  Today there is no space for cancer talk here, thank you very much!

Do butterflies get wet in the rain? My “other life”

It was Saturday morning and I was sitting listening to the monsoonal rains pounding the garden, the earth welcoming this drenching.

This was the time I had set aside to think about Marie’s suggestion in her blog Journeying Beyond Breast Cancer that we describe our non Breast Cancer “other” life.  I find that I protect areas of my “other life” when blogging, in particularly in relation to my family and work, and try and maintain their privacy.  So I was struggling a bit to decide what was appropriate to share.

Instead of focusing on the task in hand, I found that my mind was wandering and my attention being drawn to a little black and orange butterfly outside in the bushes beside the mango tree.  He was flittering around, doing his butterfly work and seemingly oblivious to the rain.  The rain was not as heavy as it had been earlier, so perhaps he had come out of a sheltered spot.  My mind was off on a completely different trail.  I just could not help wondering – does this little butterfly not get wet?  I know his life span is short, is it further threatened by such torrential rain?  I learned very young that butterflies are very fragile and that even a touch could destroy their wings and kill the butterfly.  So where does he hide when the rains at are their heaviest, when it is too wet for most beings?  Does he have a rest from his tasks and wait for the rains to ease?  Or is he destroyed, defenceless and exposed to the elements?

I found myself unable to contain my curiosity about the butterfly and the rain, and finally conceded, keying in my question and sending it to the Natural Science cousin of Dr Google.  I was relieved to learn that butterflies are pretty wise little beings and they take refuge under leaves, in hedges or in other sheltered spots and protect themselves from the damaging rain.  Kind of obvious really.  But that was just the start of a path of discovery of all sorts of interesting things about butterflies.  It really made me smile to learn that female butterflies have a really neat little manoeuvre if they want to avoid unwanted male attention.  They just fold their wings flat, and they become invisible!  Don’t you just love it when you find out something new like that, when you are not even looking?

And that’s when I realised that I had not been avoiding my reflection on my other life.  I had been living it, allowing my curiosity to pursue a puzzle and my imagination to take off unhindered.  In my “other life”, I am always unbearably reminding family, friends and colleagues that “you learn something new every day”.  It is something I find particularly pertinent in my professional role as in education programming. As an adviser, I am anxious not to appear condescending, or “know it all” as I guide and support programming.  If I can demonstrate that I learn something new every day, then it reinforces the importance of learning and being open to new knowledge throughout our lives as well as ensuring that we all have that same chance to do so.  Learning is not discriminatory if we can be open to it.

When I think of my “other life” I recognise that it is a composite of many “lives” and I know that these have all played a role in the building the present day “other life”.  Even so, often I find it hard to believe that I am in this place, in such a fascinating environment and professionally enriching space.  I met up with a friend several months ago, as we just happened to be passing through Bangkok airport at the same time.  I was travelling from Colombo to Yangon and she was heading from Delhi to Hanoi.  Two Glasgow girls!!  Incredibly we not only transited through the same city on the same day, but we did so in the same short 2 hour window.  We had a crazy, 15 minute, standing in the transit passageways, squealy excited rendez-vous before rushing off to catch our respective onward flights.  Being Scots, and from a similar background we both giggled like schoolgirls as we marvelled at where we were.  Neither of us could have imagined living such a seemingly exotic, and definitely exciting life.  Neither of us came from the conventional routes into this, and hard work had been the main route to where we were, as well as having the mettle to grasp exciting opportunities even though they appeared daunting.  Most striking though, was the fact that back then, I could never have dreamed that I would be living this life now.  I always had a fantasy of living overseas, but with home responsibilities, a lack of what I believed was relevant skills and experience, and no obvious opportunities, it was a distant and unlikely dream.

So how on earth did it actually become a reality?

I realise that I have had a relatively unorthodox life and career path even when I was Scotland-based.  I went to university when I was 30, as a mature student with demanding domestic responsibilities.  I studied modern languages because that meant that my family and I would have the chance to spend time abroad.  We lived in France for a year, and spent a term in Belarus a few months after its independence as what was the Soviet Union was collapsing.  Not the best setting to improve my Russian language (in a revival of Belarusian) but a fascinating experience.  Those university years were tough, especially financially, but we undoubtedly gained much from it.  After graduating, I took up an interesting position in international affairs and programming in local government.  A great mix of the previous community development experience I had before university, and my love of language and international work.  I loved bringing an international dimension into lives of people who otherwise would not have that experience, including artists with disabilities and school pupils from difficult backgrounds.

Family responsibilities changed as we approached the new millennium, and after my Trans
Siberian Train adventure
I spotted my “dream job” advertised in the newspaper.  An international agency was looking to hire overseas, field staff to manage the development programmes.  Incredibly and fortunately, my unorthodox mix of experience and skills seemed to provide what was needed and I was offered a position in the Nepal programme.

I had only been to Asia once when I stepped off the plane in Kathmandu in July 2000 to take up that new job.  I had no idea what to expect.  The work was new, the country was new, the organisation was new, the language was unknown to me.  It was simultaneously terrifying and utterly thrilling.  I knew that I was taking a risk, and that it might not work out.  I also knew though, that if I did not at least give it a try I would have massive regret for the rest of my life that I had lost such an opportunity.

The fact that I am still in Asia, 11 years later, and still enthusing about this life, speaks for itself.

The thing I love about my work, throughout the 5 ½ years in Nepal as well as the following contracts in Mongolia, India, Sri Lanka and now Myanmar, is that there is a wonderful mix of practical grassroots work with strategic level work.  I love spending time in communities in remote parts of the country, listening and learning about the challenges in these areas, and developing an understanding of the context.  This gives me the background I need to be able to work at a strategic level, to support work towards ensuring that all children have a chance to have a quality education.  I enjoy working with colleagues to feed into the bigger picture and ensure that our work is grounded and appropriate.  I love the fact that one day I might be in meetings with the UN or diplomatic level colleagues, and another I can be in a very remote village, accessible only by bullock cart, talking with parents about their children’s care and development.  I still find it hard to believe where I am.  There is not a day goes by that I am not humbled and thankful.

The cancer encounter happened after 9 years in Asia, and thankful as I am that I am currently in NED’s company and have been mostly able to pick up the pieces, I would be naive and wrong to assume that nothing has changed. If I have a recurrence, it is highly likely that I would have to give extremely careful thought to whether or not I could continue life and work overseas for financial as well as practical reasons.  All the more reason to value what I have. 

I am not going to dwell on that right now.  That cancer diagnosis is a fact, and it is why the biggest areas of my life found themselves relegated for a bit.  Now I trust that it is just one more component of what all goes together to make up My Life.

Snapshots of other lives

While the more detailed story of “My Other Life”  is taking shape, I was inspired by posts by Marie and  Brenda which  picked out a number of wonderful facts and snippets about fellow breast cancer blogging buddies.  I thought it would be fun to put together some random snippets about the other me, just to add to the mix.

A snapshot of the “other” me

  • I can’t live without music.
  • I am scared of heights
  • I love puzzling over word games and unravelling tangled string
  • I am so short sighted I can hardly see my own feet
  • I have my nose pierced
  • I can’t drive!
  • I can’t live without books
  • I am better at eating than cooking
  • I am fascinated by lizards and geckos
  • I love dancing, especially Bollywood and Bhangra
  • I cannot understand trigonometry or why it might be useful. (And I failed maths and physics at school)
  • I harbour unrealistic aspirations to be a photographer, painter and writer
  • I have an unwarranted dislike of celery and guava.
  • I have the most incredibly vivid dreams

As you can imagine, there is plenty more where that came from, but these are just a few random snippets about what makes up the “other me”.

It is just wonderful learning about each other and keeping cancer out of the limelight for once.

Je ne regrette rien – reflections on mortality

A random click this weekend directed me towards this article about unfulfilled wishes of the dying.  It immediately sparked off a whole train of thought and reflection about regret.

Something I discovered early on about cancer is that it caused me to reflect on my mortality. Reflect being a euphemism for lying sleepless, with my mind racing into the most extreme scenarios. Being confronted head on with our mortality is really scary and the thoughts can be dark. That does not necessarily mean it is a bad thing though to reflect, and to be reminded of our transience.

I can clearly remember when I was first diagnosed, in that difficult space when you know you have cancer, but not any of the fine details. Before those critical pathology results such as the strain and aggressiveness of the cancer, the dimensions and characteristics of tumours, lymph node involvement, whether or not the cancer appears to have metastised…….. In other words, the vital clues about our stage and prognosis and what on earth the future might or might not hold.

I will never forget those thought paths. My mind would propel me into uncharted waters, places I realised that I had never ventured, and places that I had avoided visiting. I know I am not the only one who has spent time funeral planning in those early, frightening days.

When I read this article about regrets and unfulfilled wishes of the dying, it resonated with my own reflections when I was first diagnosed. I spent many night-time hour or so, unable to sleep, playing through the many possible different scenarios. I clearly remember talking with family at that time, alluding to the possibility of a stage 4 diagnosis. I remember trying to convey my belief that if my prognosis was indeed short, I wanted my loved ones to know that I had no regrets. This was understandably upsetting for family as they felt that it meant that I was “giving up” and would just sit back and let cancer take me away.

But that was not what I was trying to express. What I was trying to say was that, I truly and honestly say that I can look back over my past years with enormous gratitude for what the life I have lived. Don’t get me wrong, I have a HEAP of things on my wish list to do and see, in the decreasing amount of time available to us all, and as long as I am fit and able I intend to work my way through my wish list. But even if things changed tomorrow, and I had a recurrence, there is not really anything on that list that I would feel compelled to rush out and tick off.

I don’t intend for this to sound morbid, as it must have done to my family at diagnosis time. Not at all – it is a celebration and recognition that I have no significant regrets or unfulfilled wishes. And that’s not the same as having an empty set of plans and dreams.

It does not of course mean that I would not do or say some things differently if I had the chance again. Of course I have the benefit of maturity, experience, hindsight and a heck of a lot of learning the hard way to make me wise after the event. Facing my mortality, however, prompted and nudged me to share these thoughts with my nearest and dearest, so that they know that I can recognise that I have not always done what I would believe now would be best, and that I would trust that I would do things differently with the benefit of this experience. This has been very healing and brought resolution to matters which I probably would not otherwise have addressed. I have even found that incidents or actions which played large in my mind and conscience were not always as troubling to others as I believed they would be.

Reading the list of unfulfilled wishes has been another prompt, and a reminder to take opportunities when they appear – fulfilment, peace of mind and resolution are all the sweeter if we have longer to cherish them.