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?

In the dark of the night...

Have you ever been to that dismal place of deep, dark desperation? The place where you think, ‘I cannot do this anymore. I cannot go on. Don’t make me go on. Make it stop.’

Most of us have, I suspect, been there. Or been somewhere on the path to that godforsaken place at some point. It is a bleak and isolating experience where you can no longer see the light, and perhaps you don’t even want to.

If you haven’t been there, then lucky you. Unfortunately, at some point in our lives most of us will experience that rug-pulled-out-from-under-you, wind-punched-from-lungs anguish that accompanies every variety of life challenge from relationship breakdown to loss, from health issues, to genuine physical and mental pain.

The question is, what pulls you back from the proverbial edge? What enables you to carry on, to fight back, to build up from that dismal pit? What enables you to do this again…and again…and again.

I will tell you now that there is no one answer to the question I have posed. The answer will vary from person to person and from day to day. For I have been to that dark place several times in this last year, several in fact in this last week stuck in hospital with a further excruciatingly painful bowel obstruction.

The irony the timing of this incident is not lost on me. The cruelty of this latest episode has been felt far more keenly by virtue of its juxtaposition against a period of relative calm and joy. After the misery of surgery and months of chemotherapy, it genuinely felt like my world was opening up; for travel, to see friends, to get back to work, to climb mountains even (more about Snowden in my next blog). Then last Thursday after a surprisingly magical day filled with unusually well-behaved children and a girly supper that culminated in dancing around the kitchen table, it folded in again without warning. Collapsing spectacularly into writhing, gut-wrenching agony which no standard painkiller could touch. (Believe me, I tried)

I put on my brave game-face for long enough to outsource my childcare to my wonderfully supportive nursery, drive myself to A&E and throw myself at the mercy of the NHS. It was as I suspected. Another bowel obstruction. I knew and feared the road ahead. Days of Nil by Mouth (NBM) and zero calories. A regimen which leaves you weak and frail. This accompanied by the institutional trappings and routines of the NHS; endless cannulas, saline drips, the wards rounds of drugs that bring relief (and occasionally morphine induced and welcome oblivion), the dreaded nasogastric (NG) tube…and the incessant vomiting.

Despite having been here before I had forgotten the pain, my memory had erased it. Pain in which there is no world beyond the torment of your own body. All-consuming. Exhausting. Seemingly unending. In the grip of such agony, there is no light and no hope.

Unlike childbirth, in which the gap between contractions brings intermittent relief, and wherein the prize at the end is great indeed, this pain has no silver lining, no reprieve. It was at times relentless. Pain can also shapeshift and morph; gain control of the lower abdominal spasms and then the back ache become acute. Resolve the stabbing back pain and perpetual nausea ensues.

It is a game of cat and mouse, firefighting to control the pain rather than fix the root cause of the problem. As a rationale pain-free person I would suggest focusing on the root cause. Obviously. But as a patient who has literally counted down twenty minutes, broken in seconds and half seconds before being allowed my next IV pain-quelling fix, I say ‘focus on the pain.’

At its worst, having literally performed the counting exercise above for just over two hours, alone in a fabric cubicle, sat on the edge of a bed rocking silently forward and back with a sick bowl in hand, belching foul air every few minutes whilst the joyous cacophony of visiting hour floats over the curtains, I can tell you it is a low and humbling place. I cried. I prayed. I would have done almost anything for the pain and nausea to stop. I had already thrown up litres of dark, murky, bilious liquid that day. Yet every few hours it would accrue, reach a certain level and pour out of me.

I am conscious that many endure more and worse than the above, but on the fifth day, at the point when my body and mind was exhausted by sleeplessness, lack of calories and by the pain itself, this was my rock bottom. I could not see an end in sight, not even a glimmer of light. As someone who (in sound mind and health) is of the ‘pick-yourself-up-and-try-again’ school of thought, being in and being reminded of that horrible, faithless place is tough to stomach.

Yet I digress. My original query was about the things that get you through the pain when medicine fails. When it is dark and you cannot see the light you often need an external influence to jolt you back to belief, or to show you the flicker of hope that you cannot yet see.

Simply counting down the clock and knowing each half second was a half second closer to experiencing less pain was a helpful tactic, but it doesn’t bring the light like the comfort others can offer.

During this particular stay certain things made the difference between despair and hope. Of course I found it helped physically having someone there with me. To smile, to hold my hand, maybe to rub my back, but mostly just to be there and remind me ‘this is not the end.’

But in hospital there are many hours in which you are, by necessity, alone. Fortunately, my amazing daughter as I staggered out the house that fateful Friday with a hospital bag, handed me two items; a necklace of plastic, glittery beads that she had hand-strung with love the day before, and a garish, plush frog called Smoochy, in case I got lonely. I can’t tell you how much those items helped me. Smoochy, in particular. Omnipresent reminders of my family and my children. Reasons to drag myself off the floor and keep fighting. Reasons to get through just another minute, and then another, and then another.

Of course, my family and friends have, as ever, rallied to support me through visits and messages, virtual and real, photos of sunrises, hugs, etc. Those little messages, each one perhaps insignificant to the sender was a sign to me that the outside world cared. Each message served as a reminder to breathe deeply, a nudge to believe that this pain would pass, that I would get better and that I would get beyond this.

@pswecreate Sam Pooley-Stride

Two ‘messages,’ in particular, stick in my mind. 

The first involved a stunning, glorious, life-enhancing painting created by a talented friend and artist, Sam Pooley-Stride @pswecreate, which reminded me of a tower of strength, the strength that family members offer to one another to reach great heights. At the time of receiving it I had no strength left, but as I stared at it I realised that very few things are strong all the time. Much like Jenga bricks, towers can be destabilised, toppled and yet rebuilt. That inspirational image helped motivate me to think beyond the pain to the future. A future in which I regain my balance and equilibrium and become part of that strong family unit again.

Another photo sent by a friend was of a whimsical trinket that proclaims ‘when it rains looks for rainbows, when it’s dark look for stars.’ In my windowless ward there was a dark humour to this that drew a wry smile and provoked me to locate a rainbow photo on my phone, taken from my kitchen window weeks before.

Then finally one morning I woke up and the ordeal was over. The day in which I could finally say yes to the question ‘When are you coming home Mummy?’ Magically it was the day of my daughter’s fourth birthday and the professionals consented to my release.

So now I am home. Weak, institutionalised and chastened, but home. It takes time to heal from hospital stays. Circadian rhythms disrupted by the routines of life on the ward; continuous cycles of hot drinks, washing, meals, clinicians, medications, more drinks and meals and medications, lights never off, silence non-existent. It is hard to be in there, and just as hard to leave and re-adapt to the world outside.

I have repeatedly asked what I can do to avoid this happening again, but beyond the obvious tips like stay hydrated, eat well, avoid stress (which I thought I was doing), there is no specific fault that lies at my door. It can simply be down to anatomy and scar tissue.

The thought that this could happen again is terrifying. The thought that it could be next week, next month, next year. This is along with the unmentionable threat of cancer reoccurrence, but let us not dwell on that.

You should know that many of you reading are those external influences that helped pull me back from the darkness of despair. In pain, I rarely have the capacity to reply or respond to messages, but those little snippets of love and concern were received with immense gratitude, and collectively they built the ladder to allow me to claim out of my pit.

At times, often through no fault of our own, we all need those external influences to remind us that we matter. In deep darkness, it can be tempting to lock oneself in and shut everything out. Yet this is foolish. Those little drops of care and concern are the tiny specks of light that alone seem in significant, yet together they can turn a dark night into a starry sky, and thence to a sunrise and the daylight beyond.

As someone who has, once again, felt deeply humbled by the human compassion and warmth with which I have been guided back to health and light, I encourage everyone to consider two things today. Firstly, think of someone who might be cheered by a little light in their lives and take a small action to deliver it, a message, a phone call, anything. And if, woefully, you are in that other, darker place, dare to open yourself up to those who seek to help, it’s not easy, but remember that each tiny chink of light that you let in is a step towards a brighter tomorrow.

(For those interested...this is Smoochy, the adorable frog who kept me company on lonely hospital nights)

The perils of daring to dream

In recent weeks, I have been making a mental list of the many things I am grateful for. As my latest

blogs have been largely conflicted and dark, I have been feeling the need to inject some levity into my writing. Yet every time I have tried putting pen to paper, something has happened to render me less grateful. Or maybe not ‘less grateful,’ simply distracted. That experience of the world closing in again.

It a cruel process, the expansion and collapse of my world. Just when I dare to dream about the end of the chemotherapy and the future, something happens to remind me that these remaining weeks, and indeed the period beyond will be fraught with challenges.

This last week, on the back of a wonderful, relaxing night away with my husband, (child-free thanks to the generosity of amazing friends), I felt rested and eager to spend a lovely family-focused Sunday with my children prior to Chemo Cycle 11. Everything started well with civilised wake-up times, stories in the family bed and an impromptu fashion show of my latest acquisitions (Don’t judge me!).

In short, the mischievous imp of vanity has been nagging me about a forthcoming holiday we have dared to plan. It keeps whispering the word ‘bikini’ in my ear as a pessimistic taunt regarding less appropriate beachwear for my post-operative, stoma-enhanced abdomen. Last week I duly silenced that voice by ordering a veritable treasure trove of swimsuits and high-waisted bikinis. Effective at concealing my colostomy bag…AND unexpectedly on trend and therefore readily available. (On trend is a rarity for me).

But only minutes after breakfast everything went wrong.

My gut went into intense spasms. Visceral pain ensued as I doubled up in agony in the floor, trying desperately to shield the children from my panic-stricken state. My mind lurched back to October 2016 and the beginning of all of this. Acute, stabbing, bilateral, rhythmic contractions, reminiscent of labour. Deep pain that leaves you moaning like an injured animal.

I was in little doubt that this was ‘serious’ and within minutes the kids were offloaded and I was back in hospital, assigned to the Surgical Assessment Unit, whose very name inspires awe and terror in any who have ever undergone major surgery.

It’s been a very long and terrifying week for me and for my nearest and dearest. Any medical conversation that features the words ‘disease recurrence,’ ‘surgery,’ and ‘bowel obstruction’ interspersed with barely audible adjectives like ‘potential’ and conjunctions like ‘if’ and ‘but’ is a bad week.

Recent days have been filled with intermittent pain, fear, boredom and the odd, rare, wonderful moment of levity and joy with friends.

Things I have learnt include the following:

-      That being ‘nil by mouth’ for four days is a genuine and effective medical treatment for resolving bowel obstructions. (It has also, incidentally, been a key factor in deciding whether to return size 10 or size 12 bikini bottoms following my aforementioned swimwear retail frenzy). Having mere saline dripped slowly into your veins, whilst watching those around you chow down on macaroni cheese is like torture. The experience makes hospital food smell delicious. After four days of fasting, hospital jelly was received like nectar from the Gods, with Rice Krispies an exquisite treat the following day. It makes the 5:2 diet seem like child’s play. I should stress that this enforced starvation allows the digestive system to rest, decompress and, astoundingly to resolve obstructions. I am hugely grateful for it, but I also feel liking printing and wearing a sweatshirt with the slogan ‘Cancer stole my butt’ on it, as my bottom appears to have vanished along with various other fatty deposits common to my gender.

-       That even when your stomach feels empty, it never is. Who outside the medical profession knew that you literally can vomit up litres of bile for days and days after not eating? Or that bile looks exactly like someone dredged up an algae-infested pond buried deep in your guts? Dark green with floating algae specks, although thankfully no tadpoles. I suspect they must have been killed by the acidity? I also suspect that I will never eat seaweed again.

-       That having an NG tube (Nasogastric) sucks. With no pain relief, they push a long plastic tube up your nose, past the eye socket, down the throat and into your stomach. Then it sits there for days filtering out the ‘pond water’ and waggling in your throat with every inhalation of air. On the flipside, it also makes for an interesting game for bored, semi-delirious visitors. Did I look more like an exotic hummingbird, an elephant or (my personal favourite) an anteater?

I could, and probably should, go on about the positive aspects of the immense institution within which I was treated. The diligent NHS nurses forever chasing doctors for alternative pain control options. The repeated scanning and jabbing to diagnose and alleviate my suffering. The stoicism and solidarity amongst ward-mates, united by colorectal woes and by shared pain…but I suspect I’ve given you enough of a flavour of the past week.

It was grim.

I feel tremendously fortunate that a week on from my admission, order seems to have been restored to my digestive tract. Perhaps not permanently, but the chance to be at home with my family, pain-free and indeed scheduled to return and complete my chemotherapy feels like a lucky break compared to some of the alternatives that were muted at various points during my ordeal.

To return to, and extend, my ‘bear going over the mountain’ metaphor I feel this latest episode was particularly cruel. A week ago I genuinely felt like with two chemotherapy sessions left and ten behind me, I was nearly there. I could see the light at the end of the tunnel. The end was so close I could see it in my mind. I was daring to see beyond the confines of those last two periods of hibernation to potential freedom beyond.

My bear was gambolling down the sunlit mountainside, staring only the horizon and dreaming of salmon fishing on the rivers and plains below. Yet I was so caught up in daydreams I forgot to look down at the path immediately in front of me. Perhaps it equates to falling into a deep pit? Or a mini avalanche burying my bear alter-ego in rubble? Or getting my paw caught in a snare? This latest episode totally blindsided me as I didn’t see it coming. A huge mental and physical blow, crushing hope and calling into question all those fragile dreams and plans I was beginning to make.

Perhaps I could never have foreseen this latest turn of events? Perhaps it is simply that life will always have the capacity to surprise and to shock? It can bring pleasure or pain and such events simply serve to remind you that sometimes you have no control over what comes next. A further prompt about living in the present, making the most of each and every day, and focusing on joy.

Luckily for me I have once again been blessed in my circumstances. True humanity has come to the fore again in the form of family and friends, trained medical staff and a whole community of virtual and physical support that has metaphorically pulled me from the deep pit, dusted me off and nursed me back to health. I left hospital a weakened and chastened bear. A few more scars, a little more wisdom, but nonetheless ready to fight another day.

And so onwards again to those last two chemotherapy sessions. Ever onwards towards the light.

Still positive. Yet more cautious than previously.

I have been warned by many who have trodden this path before me that I am unlikely to ever enjoy full, carefree liberty like I used to. For the shadow of recurrence will always lurk in the mind of any who have been through cancer personally or with a loved one.

But perhaps with time the shadow will recede, sometimes forgotten temporarily. So, I will look forward to such moments with great excitement, and in the meantime will cherish each and every moment of levity that comes my way on the road ahead.