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.

Yo yo days

I have started this blog post so many times over the past few days that I’ve lost count. 

Each time I write my emotions have changed.

The rollercoaster is clearly greatly overused as a metaphor, so the closest I’ve come to an alternative is that of the humble yo-yo. 

Up, down, up, down, spin, stop, up, down, spin some more. Enough said. Basically I’m a bag of emotions right now. Hit and miss on an almost minute by minute basis whether I’ll smile at you, or burst into tears.

If I had written on Tuesday straight after my appointment with the oncologist you would have seen me brimming with positivity for ‘the plan.’ In a nut shell, I now have a date to start chemotherapy. Tuesday 6^th December. Boom. Result. Hurrah (muted).

Today I was also supposed to have a PICC line put in (basically a semi-permanent line in my arm to administer chemo), only the ‘minor’ procedure was eventually abandoned as a failure after 3 hours. Cue tears. Plan A out the window, so it’s on to plan B already. Cue more tears. Rapidly followed by rational stoicism. Followed by more tears.

After weeks of creeping along at snail pace I suddenly feel things are going very fast.

I daren’t say ‘too fast’ as I’ve been waiting for this, pushing for ‘the plan’. I feel like (I imagine) a jockey might feel anticipating the start of a horse race with adrenalin, fear and trepidation all intermingled. You’ve done all you can do in terms of physical preparation, the waiting element is largely a mental game, sat atop your mount in one of those metal, caged starting gates. I’ve been desperately willing them to open the gate so I can get stuck into the long and arduous course ahead. But now the starting gate is open, I feel reluctant to spur my metaphorical horse into action to join the race.

Of course, cancer treatment is not really a race or competition. Maybe, if it is a race, it’s more like Aesop’s fable, where the tortoise’s slow, steady and measured approach trumps that of the hasty, cocksure hare. But at present it feels a little more like the Grand National to me, which is the only horse race I ever bet on, watch or know anything about. To my simple mind it involves high stakes, high emotions, big fences, lots of obstacles to jump/ fall over, lots of distractions, and it’s a long course. The pundits are always querying whether horses can ‘go the distance,’ which is certainly something that resonates with chemotherapy and the body’s ability to tolerate prolonged exposure to a toxic cocktail of chemicals.

Forgetting the horse race for now, a plan is, in my books, always a good thing. However, as most people know, any plan or strategy, be it corporate or personal, is only as good as its execution. Implementation of any plan is often the hard part; mine has many variables, interdependencies, unknowns and risk factors.

Looking ahead my ‘chemo calendar’ is almost inevitably going to be waylaid by side effects, infections of the season, not to mention minor delays associated with NHS bureaucracy. As the cherry on the cake of today’s largely miserable day, in which Plan A went out the window, I came home from hospital today to find my youngest child vomiting. So far 4 episodes in 8 hours and counting. Not my ideal choice of distraction, but distraction none the less, and thank goodness I haven’t started chemo yet.

On the subject of deviation to plans I have been warned by chemo veterans that whilst the attitude of nursing staff may be exemplary, the system often lets the side down: drugs not ordered, forms not counter-signed, blood results running late, computer literally says no, etc. I will be channelling my inner zen buddha at much as I can, trying to enjoy the silver lining of an uninterrupted opportunity to read proper novels, solve crosswords, snooze, etc. Basically I am clearing my schedule for ‘hospital days’ rather than ‘hospital trips.’

Also, as part of my risk mitigation strategy, I have been looking at what, beyond my mental state, I can control and influence to oil the wheels of the track ahead. There are a few strands to my thinking including; diet, exercise, mental wellbeing and environment.

The nutrition considerations could fill about three blogs alone. I thought I was pretty clued up and educated about a balanced diet, full of superfoods and antioxidants and stuff. My fantastic husband has, for months, been making me an ‘interesting’ (euphemistically described) kale, blueberry and citrus fruit breakfast smoothie most mornings. On the whole we don’t eat loads of carbs…but I was definitely missing some of the story, especially around sugar, but I’ll save that for another day.

For today it’s back to the mental game. Yo-yo time.

One moment I am UP, thrilled to be getting on with everything, off to hospital to get my PICC line. Next, DOWN I’m slammed back in my box in tears. A heap of vulnerability after the failed procedure. UP again after a lovely lunchtime reiki session destresses me and reduces my negativity. 

One hour later, contentedly walking the dog (also a common yo-yo trick BTW), finally feeling physically back to strength and ‘normal’ after my emergency surgery, and DOWN the fear and anxiety kicks in about chemo. My brain is shouting at me ‘You have just got back to health…what are you thinking?’ Back to health, and now I’m about to embark on a six month intensive plan to poison myself. (Hopefully temporarily, but there are always risks of permanent damage).

Rationally the medical evidence for undertaking this poisoning to prevent recurrence is compelling. Psychologically it’s a difficult step. I feel, and look physically well. So now I’m about to change that. It’s a bit like willing yourself to step off the bridge / crane for a bungee jump. Everything in your body and logical mind says… ‘Don’t do this…you might die!’ Yet we undertake such challenges for pleasure and for the adrenalin, me included…so perhaps I need to change my perspective?

On my dog walk mulling this over and feeling rather angsty I was surprised to see a large orange animal on the river bank ahead. He (I assume it was a he, but who knows?), was basking in that glorious winter sun; a rich, rusty creature with a fluffed up tail, full of vitality and life. He was surprised to see me, (and my dog) and after momentary indecision whilst we eyed each other up, he swiftly turned to bound away across the fields.

Then the irony struck me. He was the Fox I wanted to be. He could be part of my mental armoury as I take on FULFOX, my chemo combination. He was the fox full of life, a picture of health. That is the fox I want to be. A full-fox. I just need the chemo to help me get there. (This may feel tenuous to you…but it’s working for me, so go with it please.)

If you don't like the fox, then how about this? A relative who has also been through and recovered from bowel cancer told me to think of each chemo treatment like a large infusion of prosecco. To welcome it in. To crave more. To view the side effects as tangible proof that the drugs are working. There is collateral damage to healthy cells, but if it’s getting the healthy cells, it’s also getting the malignant, defective cells too. Be grateful for that.

This helps a little. Going to the hospital fortnightly for a lengthy infusion of champagne (I’m insisting on upgrading from prosecco) is an image I can work with. Please just remind me of this as I stare longingly at the real champagne that I’m unlikely to be drinking over the festive period.

So that’s where I am up, down, round and round. Maybe one day I’ll turn it into a choreographed dance? The cancer dance. (Worthy of YouTube viral sharing obviously). Until then, please bear with me, and whatever version of me you happen to meet or interact with in the days to come.