Sunday, 2 April 2017

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.

Thursday, 23 March 2017

Lessons in acceptance, courage and wisdom. For now.

Lately I’ve been struggling to finish any of my attempts at new blog posts, as when I re-read them I sound whiney.

No-one wants to sounds whiney. Nor it is doubtless interesting to read my grumpy and dejected ‘woe-is-me’ musings. I have had that the famous saying ‘If you haven’t got anything nice to say, better to say nothing at all,’ playing on repeat in my head. I have therefore kept my silence lately.

But, finally, I think I’ve turned a corner...again.  Another upwards stretch in my strange rollercoaster, up-down journey through the Badlands of chemotherapy.

Some of you will perhaps have grown up with the adage:

God grant me the grace to accept the things I cannot change,
The courage to change the things I can
And the wisdom to know the difference.’

At various points in my life, usually times of challenge and crisis, I have come back to these words, to try and work out what I need to accept, and what I can, and should, attempt to change.

As things stand, in recent weeks I have been compiling a long mental list of things I must accept. The battles that are not worth fighting.

My shortlist of things I must ‘accept’ consists of items both mundane and significant, for example:
-       That the metallic taste in my mouth, common to many chemotherapy patients, is not going away. It used to come and go, but now it stays. I am stuck with this until the end of treatment and beyond. Let’s say three more months to be realistic. (Two of treatment and one for good measure). I miss tasting food and wine properly. Roll on July.
-       That I have to wear gloves in most parts of my house and definitely outside. Tingly fingers and the nerve damage that such ‘tingling’ represents is not to be taken lightly. I may look like a lunatic wearing my woollen mittens to chop courgette, but it’s better than the alternative.
-       That arguing with my toddler daughter about what she wants to wear each day is not time or energy well spent. If she wants to wear a pink tutu, under a yellow princess dress, on top of red trousers so be it. Any who’s to say that head-to-toe navy and white polka-dots from your socks to your jacket and underpants won’t catch on as a trend. Maybe she knows something I don’t?
-       That there will be at least 4-6 days every fortnight where I am no use to man nor beast. I certainly cannot be left in charge of my children. Nor can I be relied upon to feed myself. Nor am I capable of framing simple sentences. I am a shell of a human being, and that sucks big style.
-       That my next holiday in the sunshine will require stoma-friendly clothing. Despite years of continued exercise to counter my love of chocolate and cake, bikinis are no longer my faithful friends. Swimsuits all the way.
-       That I have 4 more chemo cycles to go. Each likely to progress in difficulty as the side effects accumulate and my body creaks and complains at the recurrent stressing of its systems and functions. Am dreading each one.

The list of course goes on and on. I could make it trivial, or profound. Yet the fact remains that these are things I must accept and live with. For now.

The challenge, of course, is to accept such facts with grace. To silence the devilish voice in my head that occasionally pipes up to say ‘It isn’t fair’ and ‘Why me?’

Fortunately, on my odyssey through the poisonous seas and choppy waves of chemo, I have encountered many positive role models. Individuals who personify wonderful values and qualities that I wish to successfully emulate. They manage not only to endure but to thrive despite challenging circumstances, perhaps not always with ‘grace,’ but certainly stoicism. British stoicism.

This is more than the stiff upper-lip of bygone eras and boarding schools. This is the contagious flame of optimism and survival that says, ‘All will be well’ and ‘I am grateful for all that I have’ regardless of my predicament.

I have not yet fully mastered this sentiment. At times I can feel it and articulate it loudly. Yet at others moments I fail. More practice needed I fear.

And what of ‘courage’ to change? Change is often a close bedfellow of ‘anxiety,’ or ‘fear of the new and different’.  But change is not my enemy. I have rarely feared the new or different. In today’s world ‘change’ is a constant. Better to live with it, and to adapt, than to fight the inevitable.

The only change for which I foresee a genuine need for strength and perhaps bravery, is in my quest to give up sugar. So long have the hallowed purple wrappers of our most famous chocolatier been my friends. So long have I lent on that friendly yellow cartoon bear, that bedecks wondrous rubbery, gelatinous morsels of every colour and shape, for solace and a quick fix. The fight to give such items up fills me both with emotional and psychological terror. (I’m talking about Cadburys and Haribo in case you find my language a little obscure).

The marketing companies have done a thorough job on me. So closely is that purple foil associated with my emotional wellbeing, that it have become a default option for celebration, comfort and commiseration. I am not sure how well equipped I am to rewire my brain and reposition it as ‘the enemy.’

I am split between feeling that ‘a little of what you fancy does you good’ and the certain knowledge that this is one area in which I will struggle with simple moderation.

I know for a fact that I do not have an addictive personality. I can gamble once or twice a year on the National or the Derby, and win or lose I feel no compulsion to do it again. The same applies to many other vices; I can pick them up and put them down with little consequence. Lucky me.

Yet for me, and many others, sugar is different. The mental and psychological associations are so deeply ingrained that it will take significant work to erase those grooves in my psyche and brain. From early childhood sugar is used to reward, to cajole, to comfort. I see myself repeating this pattern with my own children. Yet a recent article* I read highlighted the fact that processed sugar sets off the same reactions in the brain as an infant’s response to their mother’s milk. Pure joy and comfort defined in neural and hormonal pathways. No wonder we get hooked, and over years those associations deepen and grow.

But for the sake of my own health, and that of my family, it is a fight I can and will take on, once chemotherapy is over. The link between refined sugar, the damage it causes in the body, and the chain of reactions it can set off is irrefutable. I am no trained scientist, yet I understand enough to read and comprehend the compelling body of evidence. Sugar of the refined, processed kind feeds and accelerates cancer and fuels damaging inflammation. In this instance, less is definitely more.

And so I will make the necessary changes. Just not yet. I have enough on my hands for now. Wisdom tells me that I should make the change, but that to do it now will almost certainly end in failure. The body and mind can only cope with so much at any one time. Simply dealing with and processing toxic, cancer-fighting chemicals both physically and mentally is enough. For now.

And on that note, with the spring sunshine outside, and my body once more back to some semblance of strength, I reckon can find the grace to accept my limitations… for now.

For now, I will find the grace to accept my lot. The grace to thank the wondrous NHS, which, for all its many issues, is providing me with the means to prolong my life and to reduce the chance of recurrence. I will find the grace and strength to take on my remaining chemo cycles whilst focusing on the bigger picture; the phenomenal and immeasurable blessing of having loving family and friends around me. What is a few more months of intermittent misery when weighed against the chance enjoy more of the wonderful world we inhabit and to see my children grow up?

So I shall cease my whining. Bring on cycle 9, bring on the swimsuits and bring on the baking-soda gargles to appease my metallic mouth. Amen to that.

*Source: The Week (although you can’t see the article unless you subscribe. Sorry!)

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