I fall down. I get up again.

Life is a tapestry indeed, with multi coloured, interwoven threads all feeding into one large, rich image.  Except that sometimes, the colours clash, or one part of the image leaves a strange and unwelcome feeling when viewed.  I don’t need to spell out which parts of the picture I don’t like looking at.

At the moment, there is such a variety in this tapestry.  There is the work thread, taking up a huge space at the moment, the swimming and cycling patch which is steady, firm and strong, the social and online thread which varies depending on how much space the other elements are using.

And there is the creative part.  As well as reading, writing and occasionally scrabbling through the cupboards and brushing the dust off my arty materials I am also part of two structured creative activities.  The first is a writing group where I am learning a great deal.  And realising how difficult this writing lark is!  The second is a Book Club.  Both groups are fairly small, and pretty informal and warm.

The great thing about the Book Club is reading material I might well not otherwise read and learning of new authors and works.  I have just finished reading The Memory of Love by Aminatta Forna ( (a wonderful choice by friend and fellow Yangon blogess Becky) in preparation for our meeting this month.

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Having lived in Asia for so long, it is fascinating to read of a country I know so little of, and in fact a continent I have barely visited.  This book takes us to Sierra Leone with harrowing and exquisite insights into its people and the conflict years and its impact.  This is not going to be a review of the book, there are plenty online and better to read the book yourself rather than listen to my take on it.  No, this is a reflection prompted by a saying which stopped me mid sentence, it resonated so fiercely.  The physical and emotional damage of the conflict combined with resilience and hope are clearly conveyed in everyday conversation.  When someone asks you how you are, perhaps you can’t honestly answer that you are fine, so the reply “I fall down, I get up again” expresses that as much as challenges knock us down, we pick ourselves up, dust ourselves down and keep moving ahead.  If you ask someone how they are and they reply “I fall down.  I stand up again” then they are saying that all things considered they are doing as well as can be expected.

Of course this can apply to life in general, but the sense of resilience, determination and hope shine particularly where the challenges are traumatic such as the armed conflict in Sierra Leone.  Or conflict in any country.  Or trauma and grief at times of bereavement, ill health, accident for example.

Or a cancer diagnosis.

And that is the saying affected me so powerfully.  The path from the point of diagnosis feels a bit like a series of really hard knocks, followed by picking ourselves up.  Sometimes those knocks bowl us right over.  The diagnosis hit must be one of the hardest. Hearing those life-changing “you have cancer” words, however they are articulated knock us flat. As we lie breathless, winded and stunned though, a strange thing happens.  I remember so clearly, when Dr W told me gently and irrevocably “this is highly suspicious of cancer” I was truly felled.  The words echoed round and round in a surreal and cruel mockery. Yet, we pull ourselves to our feet, brush down our crumples and nurse our emotional bruises and ask “what do we do?”  And gingerly take tentative steps forward.

The blows keep coming, knocking us to our knees, making us stumble or completely flooring us.

My pathology report with its “cancer in six lymph nodes” shocker, threw me back to the ground.  It was not any courage that pulled me back to my feet.  It was the fact that I saw no alternative but to focus single-mindedly on gritting my teeth and getting up to push myself through the process of surgery, chemo and then radiation.  I stumbled onwards, tumbling down again and again.  Chemo particularly enjoyed flooring me and trying to gain an upper hand by knocking me further every time.  But I did get up.  Slowly.  Cautiously. Warily.

As time has worn on and the diagnosis date gains distance, the knocks are different and of course, not all cancer knocks.  But as I fall down, I get up again.  Sometimes it is such a burden to drag myself to my feet.  My July embolism was a real side blinder which smashed me to the ground with no warning.  I have had to look all around me, in all directions as I slowly got back up again.  And then the tumour marker results in October took delight in pulling my feet from under me again.  I am back on my feet after that one, but treading warily towards the next bloodwork in January, bracing for another fall in case the markers throw up trouble, yet wishing and willing for the chance to break through this hurdle.  If all is well then I can pick up speed and strength to keep momentum and keep pulling myself up further.

The key thing is that I am not alone.  I am not the only one tumbling as these knocks come, and I know that my knocks are nowhere near as hard as those hitting others.  I am also not alone in getting myself up again.  I am helped to my feet by hubby, by family and friends, by my online friends and by strangers I have never met.

I have learned a great deal from the people of Sierra Leone and their resilience, attitude and strength.  I have also discovered that there are variations on this in both Chinese and Japanese cultures.

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This expression is one I will hold on to tightly and repeat as a mantra.  I know I will fall down again, many many times I am sure.  But with this thought in mind I know that as I continue to fall, I will continue to get up again, and again, for as long as I can.

I fall down.  I get up again.

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Blogging for Mental Health

It is rather late here in Yangon on a Wednesday evening. I am sitting under the fan, the air damp and humid as I am catching up with the rest of the world online.

I pour yet another glass of chilled water from the fridge, squeeze a sliver of lime into it, as I have done since chemo distorted my tastebuds and I found this was the only way I could suffer the dishwater taste. It is a habit I have kept up since then.

I check the twitter feed just one last time before sleeping, and see that there is an “interaction”. Always curious, I click on the icon and see a tweet from Marie of Journeying Beyond Breast Cancer.

Will you join me for #mhblogday?

She asks?

I follow the link and find out about the “Blogging for Mental Health” Challenge.

It may be late here, but this is something I have a view and feelings on. I especially have a view because I believe that there is so much focus on the physical side when we have a cancer diagnosis. Everyone knows that the disease is dangerous, and that the treatments cause all manner of difficult side effects. Everyone expects someone with cancer to look ill and haggard. But the emotional and psychological impact of a cancer diagnosis hits us with the force of a physical blow. We all remember the moment we heard the life changing words. We are caught up in a whirlwind which sweeps us up and we hurtle through treatment. But alongside the physical demands of trying to banish the cancer invader, there is a more sinister and pernicious effect which I have found grows and thrives in the troubled mind that a cancer diagnosis brings.

As the hour is late and the connection painfully slow, I prefer to paste below an earlier discussion about Captain Paranoia. (The links are not working tonight, I can always edit later…) This post sets out the troubled frame of mind which cancer has brought me, and the challenge to emotional and mental well being.

The tone of my post may be light, but the topic itself is not. My fears are real and all I ask is that they are respected and validated.

Thank you, Marie, for prompting late evening thoughts and for highlighting the serious question of mental health.

Captain Paranoia (posted June 2011)

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!