For want of an ending

For want of an ending I have delayed this blog post for over two months. Writing and re-writing

without ever quite reaching a satisfactory conclusion.
 

Perhaps I’m being unrealistic, but as a long-term Disney super-fan, and as a parent currently stuck in the ‘fairytale ending’ era of bedtime reading, I wanted, and still want to be able to share a proper ending…ideally a happy one.

 

However, it doesn’t feel like I’m quite there yet, at my ‘ending.’ But that’s what I’ve been saying for weeks, procrastinating about posting for want of a slightly better ending.

 

(I should hasten to add that nothing in the last few months has been particularly ‘unhappy.’ The trend has generally been upwards. It just hasn’t felt like the end of the story.)

 

Yet I’ve coming to the realisation that there is unlikely to ever be a conclusive end to my story that started just over a year ago. A complete cure with zero chance of cancer recurrence would be one end of the scale, the ‘happily ever after’ end. Yet, no clinician in their right mind would like to stake their reputation on that honestly being the case. Neither am I minded to contemplate the other end of the scale.

 

So, I am stuck in this place of semi-endings. There is no obvious ‘happily ever after,’ no definitive full-stop moment. I have simply reached the end of the medical conveyor belt, fallen off the production line and been returned to the real world. Healthy and seemingly cancer-free.

 

Barring a quick once-over from my talented surgeon, due at the end of the month, I have nothing medical scheduled at all. There will (I hope) be a check-up scan later in the year, but no one has explained when that’s likely to be, and clearly the NHS don’t want to commit themselves to anything non-critical right now, especially not months in advance.

 

Having not written since my operation to reverse my stoma, some of you are probably wondering how it all went, and what it feels like to be stoma-free again with those hosepipes of digestive tract now fully reconnected.

 

Now, over eight weeks on from surgery, I can tell you that it feels great.

 

Initially it didn’t. Major abdominal surgery, even elective surgery, is rough on the body. Big operation, but thanks to an impressive team of professionals, it was successful. I feel incredibly fortunate.

 

I’ve been lucky enough to evade the real horror stories of perpetual incontinence. Everything is not quite ‘normal’ in terms of how I remember it, but after spending far too long on colorectal wards being asked ‘whether I have opened my bowels today?’ you’ll be relieved to read that I can’t quite bring myself to write about or discuss the minutiae of my bowel habits any more. Suffice to say it’s all fine. Britishly fine.

 

Naturally, since my surgery I have been impatient. Impatient to heal, impatient to regain my energy and impatient to feel ‘normal.’

 

But it takes time, more time than you’d think, to recover both physically and psychologically from a stay in the ‘Land of Beep-Beep-Rave.’ Only those who have the misfortune to experience protracted periods in hospitals will appreciate my quasi-affectionate nickname for hospitals (originally coined by my sister).

 

Hospitals exist like a world apart. Each thriving and buzzing metropolis rises and falls to its own unique rhythm. An uninterrupted cyclical routine of lights on, tea trolley, breakfast, pain relief, consultant ward rounds, shower time, tea, lunch, medication, visiting time, dinner, more tea, medication, more visitors, more tea, bed, medication, lights off. As a visitor, you get a glimpse of this madness punctuated by cups of tea, but only as a patient or a professional can you begin to understand this unique environment where the best and worst of humanity is revealed on a daily basis.

 

As an inpatient is feels like an incessant soundscape within which noise and motion seem unending. Machines ‘bleep bleep’ with ever increasing urgency, graphic lines of neon flash across monitor screens, morphine pumps wail like sirens if disturbed, leg cuffs huff and puff up and down, and healing, hydrating, pain relieving fluids ‘drip drip’ methodically from drip stands on high into countless cannulas, squealing if impeded or occluded.

 

There is no rest to be gained in hospitals. Only temporary relief from the underpinning currency of hospital wards, pain. (Or, if you’re lucky, simply discomfort). The healthcare professionals team up to wage a daily battle to cure this collective pain, yet every day the tide of incoming recruits from A&E and electives to ‘Team Pain’ threatens to overpower the building, wiping out any small, marginal victories via discharge for the professionals.

 

Like some of the world’s largest and most magnificent creatures, hunted and threatened with extinction, the NHS does a phenomenal job operating under intense scrutiny and the crushing weight of public expectation.

 

But now I am out.

 

After the crisis of pain and diagnosis that threw me full throttle into the crunching mechanisms of Secondary Care, the machine has whirred and thrummed, churning through the cogs of chemotherapy and the deft blades of surgery. I have been spat out the other end, reshaped, cleansed and restored to health and independence, hopefully for a very long time.

 

All of this begs the question of ‘what next?’

 

Somehow the phrase ‘She received a clear scan, opened her bowels and headed home with some gnarly abdominal scars’ doesn’t feel a good enough ending in the face of all that I have shared with you in the last year or so.

 

Yet as I write this I’ve realised that all those endings I’ve considered to be ‘definitive’ simply seem conclusive because I have never asked what happened next.

 

Maybe Cinderella and Prince Charming had a miserable time raising snotty toddlers? Maybe their Chief Guard lead a coup and dethroned them leaving the Prince and Cinders to struggle finding gainful employment to pay their childcare bills? Maybe if I pushed myself I could imagine some truly unusual onwards stories for all my childhood heroes and heroines, princesses and plucky explorers alike.

 

All good stories inevitably involve the resolution of some initial problem, the overcoming of a physical or psychological hurdle. Yet there is a reason there are so few successful sequels. Sequels simply entail the protagonist(s) facing yet another challenge, and overcoming that too, usually via further growth, sacrifice and life lessons. It’s not quite the same second time around.

 

So, it turns out that my aspiring to an ‘ending’ is foolish.

 

Throughout this last year there have been some natural and obvious waypoints to observe and comment on, not endings per se, but milestones of a sort; chemotherapy treatments, meetings with consultants, hospital admissions, operations…and now I’ve run out of pre-determined ones.

 

Life with almost any ongoing health condition breeds a degree of dependency. My schedule has been largely dictated by others, my diary filled to the exclusion of many (but not all) of my own wishes. Only now that has all stopped.

 

It is therefore perhaps unsurprising that I have slightly forgotten how to make decisions for myself. In fact, if I’m honest, I find myself a little intimidated by the potential to determine my own destiny again, a little lost. I am knowingly procrastinating, treading water, biding my time out of fear for the future and trepidation about what comes next. For there is no one telling me what to do anymore, or where to be at any given time.

 

Clearly you may be staring at your screens with befuddlement, ‘How could I possibly see this as anything other than a huge luxury and opportunity?’ But having been robbed of my seemingly God-given rights of self-determination once, I now feel more cautious and nervous about next steps. I am also wary of the weight of my own expectations, let alone those of others.

 

Nevertheless, it is time to be brave. To stop treading water, swim to the side of the pool and climb out. To embrace the as-yet uncarved stone tablet of my future and, perhaps, to bid farewell to this particular outlet.

 

Writing in this way has brought me the most tremendous support and indeed joy through a very tough period. I find myself at a loss to express my humble gratitude to everyone that has bothered to connect, to respond, to offer comfort; it has brought me more strength and happiness that I feel capable of articulating.

 

So, let me leave you with the following semi-ending as a potential pause for thought…

 

“With tears of gratitude dancing in her eyes she blew kisses to her magnificent friends, waved fondly to several incredible clinicians, shut down her laptop, put on her running shoes and jogged off homewards keen to embrace fresh adventures, armed with a pen, a curious mind and tremendously thankful for and humbled by the love and affection of her family and friends.

 

Who could ask for a better semi-ending than that?

The cloak of invincibility

I no longer wear the cloak of invincibility; that imperceptible and invisible cape that is unknowingly

draped around your shoulders in your teenage years and twenties as you severe the bonds of parental responsibility and seek greater independence.

This unseen mantle, devoid of weight and substance (although I like to think mine was fashioned from crimson velvet and trimmed with satin) subconsciously permits and encourages magical feats of derring-do. You can leap off bridges, saved only from the crocodile infested rapids below by an elasticated cord, (the provenance of which you are unlikely to have checked with any knowledge or concern). It allows you to jump out of aeroplanes, dance until dawn in a state that can only loosely be described as ‘consciousness,’ and complete all manner of adventurous and adrenaline-fuelled feats without even a backwards glace.

It is, after all, your life. You are free to make your own choices, and so you do.

Unfortunately, with the arrival of children, or indeed the existence of any other parties who are dependent on you (pets obviously included), you suddenly become consciously aware of the existence of this cape.

In this changed state, you MAY choose to don the ethereal cloak and rejoice in its superpowers every now and then, but your perception of risk is immeasurably and irrevocably altered. Never again is it just ‘your life.’ It may be your body and your choice, but your rational assessment of consequences and risk are different.

It is therefore with incredibly mixed feelings that I prepare for major abdominal surgery. I have never before had the opportunity to ‘prepare’ for surgery. To pack a bag. To ensure I am fit and well. To rationally consider potential outcomes and to weigh up risks and benefits. It is a terrifying prospect, fraught with conflict and doubt.

If the onset of parenthood was insufficient to cause me to fully set aside my illusions of immortality and pack my cloak away in a trunk forever, then the events of this last year (cancer, surgery, etc) have taken my beloved cape and shredded it beyond recognition. In certain moments of great pain I have never felt more mortal and fallible and closer to death.

It is now just over a year since those seemingly innocuous gut spasms transpired to be a genuinely life-threatening bowel obstruction caused by cancer. October 23^rd is forever etched onto my memory for all the wrong reasons. Yet on that date, the choice between almost certain death and potentially life-saving surgery was a no brainer. No questions to ask. Except ‘where do I sign?’

Since then the conveyor belt of diagnosis, chemotherapy treatment, colorectal appointments has felt obvious and similarly clear-cut.  The potential upsides offered by unpleasant treatment weighed against almost inevitable disease progression have presented a similar ‘choice.’ Perhaps for some, in different circumstances there is a ‘choice’, but it never felt like one to me. As a former employee of the frequently maligned pharmaceutical industry, rationality and knowledge kicked in. I said yes to everything.

But this surgery feels different. In theory, this surgery is the next logical step, the step I have been pushing for and wanting. But now I have a date I’m not so sure.

This surgery is not a life or death decision. It is an opportunity to put things back where they belong, to reconnect the hosepipes of my intestines and put them back in my stomach. If all goes well, no more stoma.

Written like that it sounds simple. Obviously, it’s not.

And, as any gardener who has had experience of connecting hosepipes to dodgy outdoor taps, and of joining hosepipe to hosepipe extension will testify, issues and leakages are not unexpected. The situation is made even more complex by the lack of ‘Hozelock’ click and lock products for the digestive tract.

So, I am left feeling conflicted. Deeply conflicted.

At a selfish personal level, of course I want the surgery to reverse my stoma. This past year that I have spent with a colostomy bag has been fine. ‘Fine’ I repeat through tight lips and clenched teeth. Could I live with it forever? Absolutely. Does is stop me doing anything? No. Is it an inconvenience? Yes, it is and given the chance of life without it, of course it’s worth a chance.

However, this brings me back to my beloved red cloak. I know it doesn’t work any more. You might argue that it never did, but it used to have the most phenomenal placebo effect, and I miss that.

If it was just about me, it would be easy to say yes. But my life is not just ‘me’ anymore. I worry about what I would miss out on should, God forbid, the unthinkable happen. I am under no illusions that this is a complex operation and that there are risks involved.

Most of the consequences I can deal with, or at least I think I can. The digestive tract is incredibly sensitive, it doesn’t like being handled, or touched, or chopped about, or sewn. It is not hosepipe. It may rebel against being ‘reconnected,’ with leaking and all other manner of painful side effects, but I feel like I could live with that.

At a pragmatic level, with my inner pessimistic hat on, I may find that I am swapping a plastic bag stuck permanently to my abdomen for the adult version of my toddler’s nappy. There would doubtless be a degree of indignity in this, but this too I think I could live with. Hell, it might even make potty training the younger one more entertaining if Mummy is also trying to get back out of nappies!

Joking aside, the key word in all of this is ‘live.’ For the first time really since my initial cancer diagnosis, I find I am afraid of death.

I think it’s not just the thought of death and of all I might miss out on, it’s that at some point down the line my children would become aware of this choice that I made. For this is a genuine choice. It is not a cosmetic procedure in the sense of a boob job or buttock enhancement, but it could be considered ‘unnecessary.’ This is ultimately about quality of life and vanity, not clinical need.

And that is the circle I am struggling to square.

Do I want to rid my bathroom forever of bags and adhesive pouches and the spray that removes glue from my increasingly sensitive skin that hasn’t been glue free for over a year? Of course. But do I want my husband to ever have to share an honest answer to the question ‘Why isn’t mummy here?’ No. That thought is more than I can bear.

I now suspect I am being far too honest in oversharing my inner thoughts and emotions. I am, after all, British. It is not in our nature to air such topics and our feelings quite so freely.

Yet, writing this makes sense to me, and sharing my writing makes sense to me. So I’ll continue.

Those that know me well know that if you ask me orally about this you’ll get the more traditional and false British upper lip treatment that tells you I am genuinely ok about all of this. I’m not. I think it’s probably ok not to be ok about this.

So that’s where I’m at. There are no answers today. There is no punchline to this blog post.

I have made a decision (which I could obviously unmake) to go ahead with the surgery next week. No one is pressuring me either way. It is still my choice. It’ll make my 35^th birthday rather more memorable than it might otherwise have been, and hopefully it’ll be worth it in the long run.

The only concluding thought that I can offer is to tell you that somehow airing my fears like this feels like an unburdening, it feels like confirmation of the old adage that ‘a problem shared is a problem halved.’

The more I write the more I can rationalise everything and separate heart from head. It’s ok to be afraid, yet I also know rationally that there are thousands of people every day who go through surgery (cosmetic or otherwise) and the vast majority of them are fine, they too live, and hopefully so will I.

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.