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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