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.

Head over heart?...and collateral damage

At various points in our lives we all confront difficult decisions in which the heart and its emotive

tendencies pitch themselves against the more rational and considered mental faculties of the brain.

It’s always a tough call. Follow your heart, or follow your head?

There is not necessarily a right choice, but what if both your heart and head are saying the same thing, and yet still you know it’s the wrong choice?

With each passing session of chemotherapy my body screams at me. ‘Make it stop. Make it stop. Don’t put me through this again.’

I am particularly vulnerable to listening to this voice as active chemotherapy ends and the lull between pain and recovery drags on. The voice is even louder in the wee small hours of the morning when darkness prevails. (Friday night to Sunday night after Chemo Wednesday are dark indeed.)

My heart cries out against further treatments. It wails like an emergency siren denoting a red alert. It warns that next time my body may not be strong enough to withstand the drugs, that I may not recover.  It is hard to ignore its warnings.

My brain kicks in to hush that emotive voice. To reason that many millions endure and survive chemotherapy each year. That billions of pounds spent on pharmaceutical research, proving efficacy and weighing the risks cannot be wrong. As someone who spent a happy decade within the industry and has a better grasp than most of clinical trials and an ability to read the evidence for myself, I know that the facts stack up.

Yet it’s impossible to ignore one’s own body. Not listening to my body and paying heed to those early twinges of my gut is what landed me in emergency surgery. I refuse to play the ‘what if’ game in regards to diagnosis. That path leads nowhere good. But I am listening now.

For nearly a week each fortnight my body does not feel like my own. Spasms, twinges, fevers, wretching, fatigue, fug, it all points to the damage the drugs doing.

Increasingly the phrase ‘collateral damage’ comes to mind. It flashes up light one of those fluorescent neon tubes that more customarily denote fast food outlets or motels. It is not a helpful phrase, especially at night.

‘Collateral damage’ smacks of innocent casualties of warfare. Unintended victims of a greater act.

And so it feels with me. Rationally I know that chemotherapy is for the greater good. To stand a chance of ridding my body of any remaining malignant cells I must endure systemic cleansing of all cells that exhibit growth, healthy or not.

Whilst radiotherapy and surgery can more effectively target suspect tumours and growths, chemotherapy is by its very nature intended to be systemic. If what is left after surgery is microscopic, defective cancerous cells cunningly lurking in lymph nodes and post-operative margins, then modern medicine’s best option is full on warfare.

As the weeks go by the evidence of ‘collateral damage’ accumulates. The immune system is often first hit, dramatically. I can see it with each passing blood test. My counts of red and white blood cells, platelets and neutrophils exist well below normal levels, yet each fortnight I am desperate for my blood counts to be high enough for treatment to proceed on schedule. Psychologically the idea of delay, and of prolonging this grim routine is torture in itself.

So each week I pray that the additional injections I take to artificially boost and restart my stunned bone marrow have done their work. Thus far they have. More drugs to prop me up and partially repair the damage of their predecessors, yet they come with bone pain, fevers, chills and a host of other effects. Without them my system could not tolerate the chemotherapy, with them I can continue my toxic schedule. Not much I can argue with there.

Beyond the blood counts I watch my temperature neurotically. This was not helped this week by my toddler’s decision to plonk my electronic thermometer in the toilet. I’m sure it made a wonderful and satisfying splosh, but it necessitated the rapid purchase of an equally effective replacement whilst I wait to see if the first one can be revived in a bowl of rice.

On Friday after chemo my temperature always seems to spike up. No-one has yet come up with a reasonable explanation for this, but it seems to be the combined impact of three days of chemo drugs, plus anti-emetics AND the addition of my GCSF injection (the one that helps my immune system). Maybe my liver is running hot from having to process so much toxic stuff? Maybe it’s just my body quaking and rebelling at such vile treatment? A feverish forehead and dragon breath,( as I affectionately call that feeling like you’re exhaling fire), have landed me in hospital once. The sword of infection hangs, Damacles-esque in the air like a threat. I’ve learned to wait before I call in with my readings. If I wait, my temperature usually comes down and I can evade admission. (Clearly if it stayed high I’d go in. I may dread a hospital bed, but I’m not foolish enough not to listen to advice and protocol).

My most recent addition to the list of casualties is a deeply personal one. I shall offer no details other than to mention my reproductive system. I feel incredibly conflicted about this as on the one hand I have been profoundly blessed in my life so far. I know I have been incredibly lucky. I have two wonderful children. I want no more. My beliefs on this were set long before cancer reared its maleficent head.

But it pains me greatly at a deep, inner level to know that I have voluntarily agreed to damage a system that has hitherto been a source of great joy and pride. Destroying something that was working perfectly eats at my soul. Permanent or temporary no one can predict. Either way, it feels wrong, and counterintuitive.

My brain aims to soothe with advice that it changes nothing about my hopes for the future. Indeed, I made a sound and considered decision not to freeze any eggs, just in case. Yet it hurts and reinforces all the increasingly vocal murmurings of my heart, that this sucks. How can I voluntarily agree to harming myself in this way? My heart queries ‘what will fail next?’ my brain wavers in its resolve to continue. For a time the heart and head concur that this is madness.

And so I return to the phrase ‘collateral damage.’

As the dawn breaks I force myself to zoom out and examine the bigger picture. The bigger picture is cleansing my entire system of malignant cells that might seek to grab a toehold elsewhere and replicate out of control. Again.

The big picture waves the volume of medical evidence at me, like a giant sheaf of papers shoved in my face. ‘This is your best shot’ reminds my brain. ‘This is your best chance of ensuring it doesn’t come back.’

I know there are no guarantees. I can read the evidence first-hand about recurrence. But saying ‘no’ to further treatments is like increasing the odds and rolling the dice. It’s foolish.

As a teenager I used to have a slogan on my wall. A headline clipped from a magazine, diligently covered in sticky-back plastic along with other images, mottos and icons of my teenage years. It read ‘No pain, no gain.’

It appears I have written myself into a corner wherein my head wins again. I don’t like it, but I can live with it.