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.

Friday, 19 May 2017

The final countdown...

Whilst I have been quietly SO excited about my final chemo session (like a child before Christmas, yet far more controlled), I have also been filled with great anxiety.

Naturally I’ve been desperate to get the final 12th session underway and over. Desperate to collect my 12th fox. Desperate to look forwards to the future without the chemo schedule dictating my every move. Yet subconsciously I’ve also felt the weight of expectation, mine and others. Positive plans for holiday and celebration have felt a little like pressure.

Don’t ask me why, but I have therefore been paranoid about my blood results being ok.

Perhaps it was self-fulfilling prophecy, but my concerns about the state of my blood proved well founded. Personally, I was bothered about platelets, those little transparent discs that knit you together and coagulate when you cut yourself. Not hitherto an issue, but I’d noticed that I bruise very easily these days.

I look a little bit like a technicolour Dalmatian when I face the mirror. Pallid winter-white skin dotted with brown, amber, purple and green spots of varying size. Yet I have no recollection of any major knocks or even minor bumps that might have caused such markings.

Clearly no sane adult makes a habit of injuring themselves, but a careless slip with the knife chopping carrots, a hasty swipe with a razor blade over the knee and a rushed attempt to move hefty wooden chairs have all caused minor blood wounds in recent days. Such incidents would normally be trifling. Largely negligible on the pain scale, yet the bleeding has seemed a little excessive and unstoppable. Perhaps an indication of those pesky platelets going missing?

As my traditional Chemo Wednesday dawned, armed psychologically with all my usual talismans of fortitude: WonderWoman pants, unicorn socks…and (a new addition) of foxy leggings, I was greeted with the news of ‘low platelets.’ With the possibility that repeat bloods might show an increase between Tuesday evening and Wedneday morning I waited in hope.

It was not to be. Everything had gone down.

Neutrophils and platelets both now AWOL. Clutching at straws I tried a third set of bloods from my arm this time, not my Hickman line. As I sat there praying and begging to be allowed my chemo, I knew in my heart that it was game over for the day. Neutropenia and therefore a total absence of infection-fighting cells is not a fit state for the ingestion of toxic drugs.

Totally gutted and tearful I was sent home, armed with two delightful GCSF injections (of which I have previously written) and a prescription to rest, eat and do nothing until Friday when we would try again.

I mentioned Friday to very few people. A little like the tendency not to publicise the date of rescheduled exam or a driving test, having failed once, or twice previously.

In the interim I focused on meditation, sleep, relaxing reiki…and eating delicious cake...and slightly less delicious, but arguably more nutritious, smoothies and juices.

Friday dawned, and unadorned with my lucky pants and socks I faced the Chemo Day Centre again. 

I truly felt like all the staff were rooting for me, spurring my confidence. Blood sent off they prepared my chemo, completed the standard toxicity questionnaire: How sick have you been? Any pain? Any ulcers? Extent of your neuropathy and tingling? Etc.  All clear and weight ok (thanks to my cake diet) I was left to wait.

It turned out the vitally important Full Blood Count (FBC) was passable. Platelets still low, (but my lovely consultant had cleared me to go ahead at a greatly reduced level). White blood cells and neutrophils astonishingly through the ceiling thank to nasty injections.

For reference, a normal adult sits between a count of 2-8, chemo patients need to be above 1 to go ahead. Mine were a whopping 26.4

This result briefly made me feel like the infection-fighting alter-ego of WonderWoman, capable of

forcefully repelling any threatening viruses that languish in my kids and the near vicinity with lazer beams, ‘Kapow’ speech bubbles and flying leaps. (Although sadly chemotherapy means this elevated level won’t last).

Unfortunately, I then had to wait a further 2 hours for the rest of the blood results; U&Es, LFTs, etc. A tedious wait to tick the box, but everything was ready and waiting so I felt reassured that all would proceed.

This time my ‘final countdown’ felt less like the famous TV Progamme, under pressure from the likes of Carol Vorderman, Richard Whiteley and Des O’Connor to solve tricksy letter and number conundrums. 

This final wait was more akin to the anticipation of skiing down to the infamous Moosewirt bar on the slopes of St. Anton in time to catch their kick off at 3pm.

For those that haven’t experience this life-affirming pleasure, let me fill you in. 

Partying officially starts at 3pm when speakers across the mountain blare out Europe’s hit ‘The FINAL COUNTDOWN’ (I’m sure you know the one, feel free to click and refresh your memory). 

Like a homing call for pigeons, skiiers rally to the cry to discard skis and poles and hasten to the large wooden cabin and sundeck. There, plied with liquor by broad Austrian giants who shoulder one, often 2 filled with enormous beer steins 20 deep, interspersed by accompanying shots of schnapps and Jaegermeister to fuel the revellers’ progression to boisterous, clunky, exuberant dancing in ski boots on precarious picnic tables. 

Rather a more jubilant and euphoric countdown experience.

Back in the chemo centre finally, the green light was given, screen box ticked and I was off. I went from euphoric high and relief, to chemo slump in a few short hours, but all of this is infinitely preferable to another postponement.

So the final leg of this round of chemo is underway. My bear-self is feeling woozy, but perhaps less so than normal, lifted by a further dose reduction and by the psychological release of seeing the finish line not just in the distance, but in clear focus. 

I envisage a large inflatable arch with the word ‘FINISH’ on it, like the running and triathlon events of my former life, a plastic tape waiting for me to burst through, exhausted but victorious. I hold these photo of me completing the inaugural Masai Mara half marathon in my mind.

Such a vision will doubtless make the real conclusion, having my pump disconnected by a nurse in a couple of days a little anticlimactic, but I doubt I’ll care.

So with joy in my heart and a final dose of toxic champagne in my veins I am off to rest, and am looking forward to the tastier variety of fizz in the not too distant future.

I know that this is not the end of the road. 

There are most tests to follow, potentially more mountains to climb, surgeries and treatments to endure. But there is no point considering any of this now. The present prevails in my mind and my immediate future.

When my pump is off and my line removed I am free for a whole six weeks. Six whole weeks before anything else medical is scheduled. What a wondrous gift after 8 months of being shackled to my treatment regime and the hospital!

I feel blessed and fortunate to be offered this period of time, and I intend to make the most of it. Any and all suggestions of how I should make the most of each and every day will be greatly welcomed?

I look forward to finally being able to say ‘Yes’ to invitations and fun, and ‘Thank you’ to the myriad of people who have psychologically and physically carried me at times during recent months.

In case you felt that one reference to 80’s pop with not enough for this blogpost, let me confess that at various points in recent months I have had the Bette Midler classic ‘Wind beneath my wings’ playing in my head. For the love and support of others has indeed felt like the wind beneath my wings at times when I was too tired and dejected to fly.

So to all of you that have been there for me, in whatever capacity, this is for you.

Did you ever know that you're my hero,
And everything I would like to be?
I can fly higher than an eagle,
For you are the wind beneath my wings.

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