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.

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)