Saturday, 16 September 2017

In the dark of the night...

Have you ever been to that dismal place of deep, dark desperation? The place where you think, ‘I cannot do this anymore. I cannot go on. Don’t make me go on. Make it stop.’

Most of us have, I suspect, been there. Or been somewhere on the path to that godforsaken place at some point. It is a bleak and isolating experience where you can no longer see the light, and perhaps you don’t even want to.

If you haven’t been there, then lucky you. Unfortunately, at some point in our lives most of us will experience that rug-pulled-out-from-under-you, wind-punched-from-lungs anguish that accompanies every variety of life challenge from relationship breakdown to loss, from health issues, to genuine physical and mental pain.

The question is, what pulls you back from the proverbial edge? What enables you to carry on, to fight back, to build up from that dismal pit? What enables you to do this again…and again…and again.

I will tell you now that there is no one answer to the question I have posed. The answer will vary from person to person and from day to day. For I have been to that dark place several times in this last year, several in fact in this last week stuck in hospital with a further excruciatingly painful bowel obstruction.

The irony the timing of this incident is not lost on me. The cruelty of this latest episode has been felt far more keenly by virtue of its juxtaposition against a period of relative calm and joy. After the misery of surgery and months of chemotherapy, it genuinely felt like my world was opening up; for travel, to see friends, to get back to work, to climb mountains even (more about Snowden in my next blog). Then last Thursday after a surprisingly magical day filled with unusually well-behaved children and a girly supper that culminated in dancing around the kitchen table, it folded in again without warning. Collapsing spectacularly into writhing, gut-wrenching agony which no standard painkiller could touch. (Believe me, I tried)

I put on my brave game-face for long enough to outsource my childcare to my wonderfully supportive nursery, drive myself to A&E and throw myself at the mercy of the NHS. It was as I suspected. Another bowel obstruction. I knew and feared the road ahead. Days of Nil by Mouth (NBM) and zero calories. A regimen which leaves you weak and frail. This accompanied by the institutional trappings and routines of the NHS; endless cannulas, saline drips, the wards rounds of drugs that bring relief (and occasionally morphine induced and welcome oblivion), the dreaded nasogastric (NG) tube…and the incessant vomiting.

Despite having been here before I had forgotten the pain, my memory had erased it. Pain in which there is no world beyond the torment of your own body. All-consuming. Exhausting. Seemingly unending. In the grip of such agony, there is no light and no hope.

Unlike childbirth, in which the gap between contractions brings intermittent relief, and wherein the prize at the end is great indeed, this pain has no silver lining, no reprieve. It was at times relentless. Pain can also shapeshift and morph; gain control of the lower abdominal spasms and then the back ache become acute. Resolve the stabbing back pain and perpetual nausea ensues.

It is a game of cat and mouse, firefighting to control the pain rather than fix the root cause of the problem. As a rationale pain-free person I would suggest focusing on the root cause. Obviously. But as a patient who has literally counted down twenty minutes, broken in seconds and half seconds before being allowed my next IV pain-quelling fix, I say ‘focus on the pain.

At its worst, having literally performed the counting exercise above for just over two hours, alone in a fabric cubicle, sat on the edge of a bed rocking silently forward and back with a sick bowl in hand, belching foul air every few minutes whilst the joyous cacophony of visiting hour floats over the curtains, I can tell you it is a low and humbling place. I cried. I prayed. I would have done almost anything for the pain and nausea to stop. I had already thrown up litres of dark, murky, bilious liquid that day. Yet every few hours it would accrue, reach a certain level and pour out of me.

I am conscious that many endure more and worse than the above, but on the fifth day, at the point when my body and mind was exhausted by sleeplessness, lack of calories and by the pain itself, this was my rock bottom. I could not see an end in sight, not even a glimmer of light. As someone who (in sound mind and health) is of the ‘pick-yourself-up-and-try-again’ school of thought, being in and being reminded of that horrible, faithless place is tough to stomach.

Yet I digress. My original query was about the things that get you through the pain when medicine fails. When it is dark and you cannot see the light you often need an external influence to jolt you back to belief, or to show you the flicker of hope that you cannot yet see.

Simply counting down the clock and knowing each half second was a half second closer to experiencing less pain was a helpful tactic, but it doesn’t bring the light like the comfort others can offer.

During this particular stay certain things made the difference between despair and hope. Of course I found it helped physically having someone there with me. To smile, to hold my hand, maybe to rub my back, but mostly just to be there and remind me ‘this is not the end.’

But in hospital there are many hours in which you are, by necessity, alone. Fortunately, my amazing daughter as I staggered out the house that fateful Friday with a hospital bag, handed me two items; a necklace of plastic, glittery beads that she had hand-strung with love the day before, and a garish, plush frog called Smoochy, in case I got lonely. I can’t tell you how much those items helped me. Smoochy, in particular. Omnipresent reminders of my family and my children. Reasons to drag myself off the floor and keep fighting. Reasons to get through just another minute, and then another, and then another.

Of course, my family and friends have, as ever, rallied to support me through visits and messages, virtual and real, photos of sunrises, hugs, etc. Those little messages, each one perhaps insignificant to the sender was a sign to me that the outside world cared. Each message served as a reminder to breathe deeply, a nudge to believe that this pain would pass, that I would get better and that I would get beyond this.

@pswecreate Sam Pooley-Stride
Two ‘messages,’ in particular, stick in my mind. 
The first involved a stunning, glorious, life-enhancing painting created by a talented friend and artist, Sam Pooley-Stride @pswecreate, which reminded me of a tower of strength, the strength that family members offer to one another to reach great heights. At the time of receiving it I had no strength left, but as I stared at it I realised that very few things are strong all the time. Much like Jenga bricks, towers can be destabilised, toppled and yet rebuilt. That inspirational image helped motivate me to think beyond the pain to the future. A future in which I regain my balance and equilibrium and become part of that strong family unit again.

Another photo sent by a friend was of a whimsical trinket that proclaims ‘when it rains looks for rainbows, when it’s dark look for stars.’ In my windowless ward there was a dark humour to this that drew a wry smile and provoked me to locate a rainbow photo on my phone, taken from my kitchen window weeks before.

Then finally one morning I woke up and the ordeal was over. The day in which I could finally say yes to the question ‘When are you coming home Mummy?’ Magically it was the day of my daughter’s fourth birthday and the professionals consented to my release.

So now I am home. Weak, institutionalised and chastened, but home. It takes time to heal from hospital stays. Circadian rhythms disrupted by the routines of life on the ward; continuous cycles of hot drinks, washing, meals, clinicians, medications, more drinks and meals and medications, lights never off, silence non-existent. It is hard to be in there, and just as hard to leave and re-adapt to the world outside.

I have repeatedly asked what I can do to avoid this happening again, but beyond the obvious tips like stay hydrated, eat well, avoid stress (which I thought I was doing), there is no specific fault that lies at my door. It can simply be down to anatomy and scar tissue.

The thought that this could happen again is terrifying. The thought that it could be next week, next month, next year. This is along with the unmentionable threat of cancer reoccurrence, but let us not dwell on that.

You should know that many of you reading are those external influences that helped pull me back from the darkness of despair. In pain, I rarely have the capacity to reply or respond to messages, but those little snippets of love and concern were received with immense gratitude, and collectively they built the ladder to allow me to claim out of my pit.

At times, often through no fault of our own, we all need those external influences to remind us that we matter. In deep darkness, it can be tempting to lock oneself in and shut everything out. Yet this is foolish. Those little drops of care and concern are the tiny specks of light that alone seem in significant, yet together they can turn a dark night into a starry sky, and thence to a sunrise and the daylight beyond.

As someone who has, once again, felt deeply humbled by the human compassion and warmth with which I have been guided back to health and light, I encourage everyone to consider two things today. Firstly, think of someone who might be cheered by a little light in their lives and take a small action to deliver it, a message, a phone call, anything. And if, woefully, you are in that other, darker place, dare to open yourself up to those who seek to help, it’s not easy, but remember that each tiny chink of light that you let in is a step towards a brighter tomorrow.

(For those interested...this is Smoochy, the adorable frog who kept me company on lonely hospital nights)

Saturday, 22 July 2017

Le Flip-Flop

For those who’ve been close to me and have followed me throughout my ordeal, let me apologise in case you have been struck by my radio silence in recent weeks. My silence indicates neither good news, nor bad, it has simply felt necessary and appropriate as I seek to renegotiate my way back into ‘real life’ post chemo.

In short, I have been trying to understand what ‘normal’ feels like. The new normal that is. The normal in which I am currently free from ‘visible signs of malignant disease,’ but in which the threat of recurrence is ‘statistically’ about 50% within 2 years.

In my head this is not a great stat. It feels almost like roulette style odds or like flipping a coin. I suspect accepting the ‘new normal’ and moving forwards may take some time.

What feels most strange is that almost as suddenly as the whole torrid episode began (click to go back to the start of the story) it feels over. Or partially over. Like the TV series that ends on a cliff-hanger. You know it’s not the end. But you’ll have to wait for the next series to begin to find out what comes next. A whole year of waiting perhaps? And who knows how many more series there will be.

This ‘sudden start’ followed by ‘abrupt end’ is often the way of things with both natural disasters and human tragedies of every dimension, both in the imagined, cinematic, literary world, and in life itself. An unpleasant event occurs, lives are torn apart, the human spirit fights for survival by whatever means it can. Practicalities then naturally dominate for a period. Dragged to the base of Maslow’s hierarchy of needs it is all about elemental concerns like food, water, shelter, security. Just focussing on simply taking one breath after another.

Yet beyond the logistical steps, which most of us are relatively adept at following, are the swirling emotions that lurk, supressed by pragmatism.

Whilst deeply unpleasant, my schedule of appointments for blood tests, pump on, pump off, line flush, repeat has been manageable. Around me the troops have rallied to provide sustenance, comfort and childcare to regularly fill those critical gaps left by my own incapacitation. On some level this was the simple part.

What comes next is not.

Psychologically and emotionally one is left reeling in the wake of such a life-altering experience. It is like someone took the fragile vase of my being, tossed it into the air, watched it smash and then left me and my incredible support crew picking up the pieces and trying to reassemble the fragments of porcelain. I have had an indescribable taskforce trying to put me back to together with glue, love and sticky tape, and to work out which, if any pieces are beyond repair. There are doubtless some tiny chipped and shattered shards that will never be the same again.

In this state, I have been drawn to the image of the humble flip-flop. Synonymous with summer, sand and fun, (all of which I have been enjoying), there is something about the onomatopoeic quality of these objects that reflects my experiences of late.

Whilst you may never have noticed this, let me draw your attention to the fact that the term ‘flip-flop’ consists of two very different words. Both rife with implications of their own.

Flip, for me, is suggestive of incredible gymnastic feats, the like of which I will never be capable. ‘Flip’ conjures up the idea of launching oneself uninhibited into the sky. The word is evocative of pleasure, of fearlessness, of a wild care-free abandonment to sample the joys of life. Who wouldn’t want more ‘flip’ in their life?

Flop, on the other hand is rarely a good thing, whether harnessed to the word ‘belly’ or indeed to any other object or appendage (clean thoughts only please). Flowers drooping. Speeches failing to hit the mark. Flop. Flop. Flop. ‘Flop’ is never positive (except perhaps when allied to fluffy bunnies… but let’s not ruin my metaphor).

Since chemo my life has been a relatively even mixture of ‘flip’ and ‘flop’.

On the ‘flip’ side I had a kickass end-of-chemo/thank-you-to-my-awesome-local-support-crew bash. Massive, humungous FLIP. The bar was literally dredged of its entire contents, the tunes from local band, Crump rang out euphorically, the love was palpable and the hangovers doubtless echoed the epic nature of the shindig.

Indeed, after months of abstinence I have seen fit to crack open the fizz several times with friends both old and new. Nothing says ‘flip’ like fizz I find!

On occasion, the presence of fizz and the absence of any semblance of alcohol tolerance has engendered thrilling nights of reminiscing and regression to the days of my giddy-gaddy twenties where caution is flung to the wind like pixie dust. Little is more flipping fun than partying with fellow wondrous friends of the aforementioned era who have also lately been largely immersed in motherhood and similar, serious aspects of living with partners, mortgages, careers, ailments, etc.

Freed from the hospital shackles I have been undertaking a mini odyssey around the UK and beyond (with children) in a quest to catch up with those loyal friends and family who have played such a magnificent role of late. Highlights of my jaunt thus far include Menorca, St. Margaret’s, Wimbledon, Soho and Birmingham… all of which I’m classing as ‘flip’. Next stop, the Isle of Wight.

To conclude my tour of upsides it would be wrong of me not to inform you about a totally unexpected joy in recent weeks. My first attempt at fly-fishing.

Masterminded through an extraordinary demonstration of support and kindness by a relatively little-known acquaintance, I had the amazing good fortune to find myself on the banks of the River Test @OrvisFlyFishing, casting for beautiful trout under the careful tutelage of the lovely Marina Gibson @marinagibsonfishing. Lucky, lucky me.

For those uninitiated in the ways of fisherfolk, let me enlighten you. The jargon is, as in any new world, a little opaque. I lacked both gear and ideas, but those with both of the above could not have been kinder or more patient with my ineptitude. Marina deserves a medal for patience and persistence. I caught more grass, weeds and branches than fish whilst attempting to cast under trees for those glimmering, piscine beauties lurking in the shadowy depths on a day otherwise characterised by glorious heat and sun. Frustrating and exhilarating in equal measure as I awaited that elusive bite, but what an incredible initiation to this unknown world. The meditative and rhythmic act of repeated casting, whether attempted or observed, is incredibly magnetic. I can see why people get hooked on the art of hooking.

From epic highs let me not neglect the counterpoint to such experiences. The ‘flops’.

Perhaps it was inevitable, but after my last treatment, my neuropathy, that irritatingly tingly stabbing feeling in my fingers and toes progressed from Grade 2 to Grade 3. In the simplest of terms this means the nerve damage is now pretty bad. It is now persistent and omnipresent. The numbness and tingling no longer come and go, they are permanently there. All the time.

Some might say I have got off lightly. I could have had a worse run through emergency surgery and my gruelling 6 month chemo schedule. They’d be right. No hair loss. No obvious signs of cancer. Just the scars from surgery, my Hickman line and, of course, my ever-present stoma.

Call me naïve, but with chemo over I expected to be able to move forwards, both mentally and physically. But every minute of every day I have this nagging physical symptom pulling me back in both mind and body. It reminds me that this experience is not over. My bear alter-ego may be down off the mountain, intermittently dancing and fishing on the plains below, but that mountain casts a long shadow and for now I cannot escape it, however far and fast I run.

The feeling is impossible to describe. It’s not often painful, just uncomfortable. I feel like I’m permanently walking on gravel in bare feet that have a thick inch of hard skin on the soles. I feel partially anaesthetised, like a could take the blade of a knife, pierce the tips of each toe and feel nothing but the pressure of the act. The nerves are dull and deadened for now.

Clearly this is not cataclysmic. I know I shouldn’t whinge. But it is frustrating.

On a daily basis there are many things I cannot do. Most irritatingly I cannot write properly and grip a pen. This is particularly galling for me as a lover of the written word. Typing is great, but I have always loved to journal with a pen. From the angsty teenage years to now, the pen has played a crucial role in my emotional wellbeing. And now it can’t. Journalling is how I get my head straight and order my thoughts. Typing alone has meant that getting to this blog has been tougher than normal.

It galls me that I have the fine motor skills of a young toddler. Possibly worse than my 2 year old son. I am incredibly clumsy. Every button I labour over, every cup/jug/glass/plate that crashes to earth due to my fumbling grip is a reminder of the ongoing impact of chemotherapy. Maybe it’ll improve, maybe it won’t. Only time (months and years worth of time), will tell.

A further ‘flop’ was the look on my face and the disappointment in my heart as my surgeon unequivocally refused to consider the reversal of my stoma, unless and until, further scans show me to be cancer free. This is not what I wanted to hear.

There is no need for melodrama on my part, living with a colostomy bag is not intolerable. IT doesn’t stop me doing anything. It’s fine. Barring the occasional social situation or clothing malfunction that can reduce me to tears, I am coping. But given the choice I’d prefer not to.

So, I’ll have to wait. This felt like a ‘flop.’ A further delay in my quest to return to ‘normality.’

On balance, now I’m writing it down, it reads like there are more ‘flips’ than ‘flops.’ This may be true, but irritatingly the flops loom large and feel ongoing. The ‘flips’ were heavenly and euphoric but often fleeting. Positive memories to dine off and to distract.

The big elephant in the metaphorical room is, of course, what next? I have many questions in my mind about returning to work, about writing as a career, about how to live cancer-free, about how to move forwards, but in many cases there are no obvious answers.

In this state I am reminded of the words of the superlatively inspiring poet, Khalil Gibran, whose masterwork ‘The Prophet’ you may perhaps be familiar with? Through this chapter of my life, I have tried to stay positive, and the following quote has been key to that mindset.

Your living is determined not so much by what life brings to you as by the attitude you bring to life; not so much by what happens to you as by the way your mind looks at what happens. Khalil Gibran

In compiling this blog I had been reflecting that life might be a little easier if it were more ‘flip-flip’ than ‘flip-flop.’ I am fortunate enough to have several ‘flips’ booked for the weeks ahead: trips abroad, a writing course crowded funded by generous friends. I can’t wait.

So exciting are these ‘flips’ that I have wondered what the footwear equivalent of the ‘flip-flip’ might look like? Would I wear them? Would I want them in my already extensive shoe collection?

But this is a foolish thought, on which I must again demur to the words and spirit of Khalil Gibran.
Your joy is your sorrow unmasked.
And the selfsame well from which your laughter rises was oftentimes filled with your tears.
And how else can it be?
The deeper that sorrow carves into your being, the more joy you can contain.

Life is better with balance. Bring on the flip-flops.

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