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?

Wednesday, 15 November 2017

Calm, joy and dinosaur mittens

My first moment of levity, most unexpectedly, involved my four year old daughter brandishing scissors and asking to do some cutting. It may seem odd that the sight of a toddler wielding scissors could bring me peace, yet the other night it did.

What started out as a large, blank, dark sheet of paper was, in the space of ten minutes, vigorously and methodically chopped into ever smaller and smaller snippets of paper. The hacking process only ceased when the tiny irregular scraps that remained were too small for her to hold.

Cutting done she looked down at the mountain of paper shards, smiled with mischief in her eyes and blew at them repeatedly like the storybook wolf who huffed and puffed to blow down the little piggy’s house of straw.

It made one hell of a mess, but (uncharacteristically) I smiled too (before later getting cross as I tried to instigate tidying up).

My smile was the result of seeing in her actions a parallel of my own. At the most basic level she had taken something big and broken it down to small irrelevancies, much in the mould of chunking up the insurmountable, proverbial elephant into bitesize chunks.

Since I last wrote I have been able to move forwards from my intense fear and doubt.

For me, the act of writing out what is circling in my head allows me to break down the component thoughts into rational fragments that can be processed. Once written out openly those big thoughts and questions lose their power over me, and once sent out into the world at the click of the button, they are shared and spread…much like those little paper snippings that covered my kitchen floor.

With the fear shared and therefore reduced I have felt unexpectedly light. Free and light. I have felt that ‘devil may care’ and ‘nothing to lose’ sense of urgency to accomplish whatever I fancy, create and savour positive memories and have felt increasingly attuned to the joy all around me.

As many of your will know, getting kids to put coats and shoes on to exit the house in a timely manner is normally a chore, scarves and gloves add to the complexity, which is usually a cause of great stress and frustration. But I could not have been more thrilled by the chilly winds earlier this week.

My son (grudgingly) donned in a ridiculous robot woolly hat complete with antennae, accompanied
by dinosaur mittens that feature eyes and spikes. His little dinosaur mittens hands then roared at each other in innocent play for a full 5 minutes in ever greater volume and vehemence on the streets of Shrewsbury, it made me wish for eyes and spikes on my own gloves. For what simpler joy could there be in life than to have roaring dinosaur mittens?!

In reflecting on and noting such simple joys I considered titling this post, Ode to Joy, but that caption would put me in competition with Beethoven and Schiller, intellectual heavyweights whose genius feels somewhat at odds with dinosaur mittens.

Beyond those dinosaur mittens I have been lucky enough to enjoy some fantastic moments of levity; I have revelled in getting glammed up for a night of carousing and dancing with my husband, sister and many wonderful friends. How rarely these days does when get to drag out a ball gown (or several), try them all on with, drink champagne whilst getting ready with ones sister, and eventually dance til the wee hours with my husband and friends.

A further source of elation, was that prior to my partying on Saturday night I somehow managed (genuinely not sure how) to smash my Park Run PB by a further 40 seconds, taking me down to 22.21. This does of course beg the question of what I have been doing these last few months, but I will credit my PT Ben Booth who has been helping me crank up my fitness lately along with a genuine ‘nothing to lose, won’t be doing this for a while’ attitude.

And so today is my 35th birthday. My bag is packed, the kids are up and I’m off to hospital. Thank you for all your lovely messages of celebration and support and I will see you on the other (hopefully stoma-free) side.

Wednesday, 8 November 2017

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 23rd 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 35th 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.

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