Tuesday, 16 January 2018

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?

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