A regrettable winter

My mother died twenty years ago this December 2nd. I remember it clearly for several reasons. Her death was unexpected, she’d almost finished chemo following another run-in with cancer. Cruelly, she was in hospital receiving treatment for chemo-related complications and everyone thought she’d be home for Christmas – she wasn’t ready to give up and nor were we but none of us got what we’d hoped for. Fortunately or unfortunately depending on your viewpoint I was there when it happened, and now, 20 years on, the violence of her death still plays vividly in my memory with full technicolor and time stretching slow motion despite my best attempts to erase that fateful winter day.

In the early years following her death seasons of the year blended one to another, life continued but the gap she left behind was all consuming. Christmas, which had always  been one of my favourite times of year, became desolate and hurtful. My memories consisted only of my Mother’s untimely death and the actions that had consumed me in the period leading up to her funeral. I spent many Christmases in the wilderness, caught between bereavement and bewilderment. It is not a time I would choose to relive.

Roll forward twenty years and I’m still here, and still filled with sadness about my Mother’s death. It’s no longer acutely painful because as humans I suppose we’d cease to function if anguish and torment stayed so raw for so long. Today the feeling resembles a blanket of numbness, the kind that comes with Novocain. You know there’s a lot of pain beneath but on the surface it’s no longer perceivable. Somehow  you know it’s a trick, because the numbness is transitory and the pain might resurface when the Novocain wears off. So you hope it never wears off.

For the longest time just thinking about my Mother conjured images of her death and nothing else. It’s taken two decades for other, happier memories to creep back in.  My Mother was never a moaner. Throughout her illness she never asked “why me.”  During her sickest, most challenging days she always had more concern for others than she did for herself.  Generosity of spirit was one of her greatest characteristics and something I learned a great deal from.

Twenty years on my relationship with my Mother’s death has shifted from one of desolate unhappiness at her early departure to one of gratitude and profound joy for the time we spent together. Of course I’d have wanted her to have 80-something years on Earth instead of the 40-something she achieved. I’d have wanted her to enjoy many more happy years with my Father and live to see her grandson grow into a young man with a passion for helping others and a talent for medicine. Winter 1996 snatched all of those things and more away from us. But times change and winter is no longer such a regrettable time of year. I remember happier times, times spent with my Mother making Dundee cake and Brandy snaps,  decorating the Christmas tree and wrapping presents. Her death was cruel and untimely but her loveliness and warmth live on, timeless and unchanging.

Summer 1993, Mum, J & me

Summer 1993, Mum, J & me

 

 

 

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Tabula rasa

Several years ago M and I agreed that assuming you reach it, a time comes when having more stuff – trinkets, baubles and chattels – is unnecessary. That time happened to coincide with my cancer diagnosis. The maelstrom that followed only served to reinforce our thinking and of all the stuff we had, time and health were by far the most precious. Unfortunately they both seemed to exist in a separate realm, one that was well beyond our immediate influence or direct control. When presented with significant and life-threatening challenges time is suddenly measured in moments not years and moments can seem extraordinarily brief.

Peace for the restless soul - Lulworth Cove

Peace for the relentless soul – Lulworth Cove

On Saturday it was M’s birthday and rather than look for useful yet useless material goods I opted to create moments – experiences that will endure time even if one or the other of us doesn’t. It’s a fact of life that neither of us will last forever but our memoires might if we write them down, record them in photographs or share them in stories for future generations.  With that in mind and as a surprise birthday getaway I arranged for us to spend a few days in Dorset. M was duly surprised and pleased. He enjoyed the location, the warm weather, the food, the wine and the great outdoors. Our brief sojourn presented a welcome escape for me too following months of non-stop activity thanks to a continual stream of increasingly paradoxical issues at work. Good fortune smiled on me and what started as a means to create enjoyable memories for M on his birthday also became three days of peace for this somewhat wearied yet relentless soul.

The last time we visited Dorset I’d just finished treatment, a whole twelve months of it. I could barely walk and found myself exhausted every hundred yards or so on flat ground. Climbing stairs was virtually out of the question. As a shadow of my pre-treatment self I remember my inability starkly and cheerlessly. I also remember how very glad I was to be alive. To prove it I pushed my battered body to its limits. On reflection I afforded little allowance for the gruelling assault my physical self had recently endured because treatment was over and I wanted to be me again. Submitting to a range of rare yet debilitating long-term side effects was not the outcome I  intended.  This refusal to accept my suggested limitations may go some way to explain why M remembers our visit but doesn’t recall any trace of my incapacity, frailty or complete absence of stamina. I also had very little hair at the time yet it transpires M remembers nothing of the seven months I spent as a translucent Gollum-like creature, entirely bald, without eyebrows, eye lashes and missing assorted toe nails. For him it seems the year between my diagnosis and final Herceptin treatment is something of a tabula rasa. All the details have been erased. The same is not true for me. I recall details of treatments and appointments, waiting for results and wondering what next…

Aside from regular follow-ups that time is now past and though I rarely wish my time away I am glad to be the other side of diagnosis and all that it entails. Damaged joints remain damaged but they are manageable and largely compliant with the wishes of their owner. Stamina continues to grow and Herceptin weight-gain continues to resolve thought that is taking much more time, effort and discipline than I’d ideally hoped.  Moment by moment life returns to near normal, so much so that it overshadows the prospect of an unexpectedly swift demise. The slate is never entirely blank, every cancer patient knows that, but it is clean enough to support the odd daydream and make little plans for the future. In a world where miracles are increasingly rare that is miracle enough for me 🌠

Sentience

Like one, that on a lonesome road
Doth walk in fear and dread,
And having once turned round walks on,
And turns no more his head;
Because he knows, a frightful fiend
Doth close behind him tread.

    

Samuel Taylor Coleridge – The Rime of the Ancient Mariner

Sailing Away

Sentience is a blessing and a curse. Some days are more cursed than others.

I didn’t watch The ‘C’ Word. I followed Lisa’s Blog but didn’t have the necessary psychological flood defences in place to watch her story played out on television. A dramatisation and by all accounts a very good one, it might be better categorised as reality TV. It reflects the harsh reality of breast cancer where life no longer comes with a happily ever after guarantee. Some people with breast cancer do not survive. Some people with breast cancer die. Some of them are very young.

Survival has been playing on my mind a lot lately because there is no rhyme or reason to it. No-one knows who among us will outpace the frightful fiend, who might be forced to endure it to the bitter end or who might find themselves facing it on more than one occasion.  This is ambiguity on anabolic steroids and uncertainty reigns supreme. In this version of reality sentience is more curse than blessing. Lately it seems for every survival story there are multiple stories of an all too early demise.

As humans with a limited time on earth we must learn a crucial lesson – never take anything for granted. Health, strength, life itself, these things can all be taken from us in the blink of an eye.  Most people don’t need to think about mortality on a daily basis and that’s probably a good thing because life would be very depressing if we did. Those of us who do think about it – a thought pattern that is almost inevitable after a life-threatening illness – probably do ourselves no favours. Worrying about our own mortality doesn’t change the final outcome. This is another scenario where sentience proves to be more of a curse than a blessing.

So what of the blessings? Feeling the sun on our skin, watching grass grow, celebrating another birthday, anniversary, Diwali or Christmas are all blessings. Walking in the park, riding a bike, reading a book, those things are blessings too because life after cancer is difficult. It throws up questions for which there are no answers and searching for answers offers no reprieve. The simple act of waking up each day is a blessing in this reality, when you have no idea how many days are yet to come.

Chrestotes: the quality of kindness.

Someone once told me a cancer diagnosis is the fastest way to find out who your friends are.  True friends will shine day and night while fakes become increasingly conspicuous by their absence. When your world shakes over twenty on the Richter scale another earth shattering revelation – you’ll be abandoned by people you care about – is almost as shocking as the diagnosis itself.  I remained open-minded and hopefully optimistic while chemotherapy dissolved more than just the cancer.

Three years on I’d love to report that my optimism was well placed, the advice proved invalid and all my friendships remain intact but I can’t.  I’d like to share an explanation for the disappeared friends but I can’t do that either because they evaporated into the ether like the crew of the Mary Celeste. I guess cancer is still too much for some people to deal with.

But the story doesn’t end there.

Aviary Photo_130718654939381437The other part of the prophesy – true friends will shine day and night – is equally true.

They shone, they shine and they keep on shining 🙂

I feel very fortunate to have true friends who are hugely supportive, thoughtful and encouraging.  They demonstrate all of the qualities of chrestotes: compassion, consideration, sympathy, humanity and kindness.

They’ve sent messages for a speedy recovery, cards, flowers and gifts. I am touched and overwhelmed by their continued kindheartedness and support and I feel extremely lucky to know such genuine, compassionate and beautiful human beings.

I’ve also received cards and good wishes from family friends – people who know of my trials and tribulations via my father and decided to lend their support. My hopeful optimism wasn’t entirely misguided because family friends, friends of friends and complete strangers have all proven amazingly kind.

Of course a post about kindness would be incomplete if I failed to mention my father.  For as long as I can remember he has devoted his life to help others yet his own life has been far from easy. A lesser person might have become peevish and resentful – my father isn’t.  Throughout the process of diagnosis, surgery, treatment, recovery, first prophylactic surgery, recovery, the recent second prophylactic surgery and this new period of recovery my father has been an inspiration – encouraging, supportive, wise and humorous (he has an excellent sense of humour and sometimes laughter really is the best medicine…)

The kindness shown by my family and true friends will never be forgotten. It buoyed me through some very difficult experiences and continues to inspire me on a daily basis. WP_20150320_010I am so very grateful to you all.

Another year over…

The winter solstice passed by ten days ago and in the northern hemisphere, slowly but surely, daylight hours are beginning to increase. Tonight we usher in another New Year and in doing so set this one behind us. Another year over. In less than 6 months the summer solstice will mark a return to darker nights and the cycle – birth and death, growth and decay, dark and light – will continue. That is how our planet works.

At two points in my lifetime our family had five generations to celebrate Christmas and New Year, something of a rarity even in days when families were very large and women typically had children in their late teens or early twenties. Today very few of us remain and those who do are scattered over long distances across three continents.  Family is important to me and I would happily forgo all worldly goods for the opportunity to spend an extra year with lost loved ones, though a year would be insufficient because some were lost at a very young age. Young or old I know that parting again from those held dear would be far too difficult, something I would not relish for a second time so memories and photographs must suffice.

My oldest living relatives, my great aunt and great uncle, are 86 and 89 respectively. I was unable to visit during cancer treatment because I was chemo-pale and sickly, doing my best to avoid infections. They had experienced all that 17 years ago, immediately before they lost their only daughter and I couldn’t countenance this elderly couple bearing witness to the ravages of cancer treatment yet again.  A couple of years on and I’m largely recovered, pass for near-normal and have a functioning immune system. The Christmas break offered a good opportunity to visit and I found that Aunt and Uncle wear time well. They remain largely independent though they’ve both faced many personal health challenges in the last few years. They continue to live in the house they moved in to over half a century ago, the first house to be occupied on their street of brand new houses at the time.  Uncle tells me they are the last of ‘the originals’ on the street, they have seen many people come and go and he has lost his oldest friend in the last few months. Great aunt remains a country girl at heart, the Welsh lakes and mountains are never far from her thoughts and I am sure if she could, she would return there.  Though they’ve been married for 63 years I noticed Aunt continues to call Uncle cariad; he calls her cariad in return. Darling or sweetheart in Welsh. We talk of many things, of our lost loved ones and of those who are still here, of modern times and days gone by. Uncle gives M a bottle of beer and they discuss their favourite brews, he has a J2O for me because Aunt has told him I’m doing my best to take care of my health. We pet their dog (who is also very old at c17 but no-one knows his age for sure – he was rescued). We drink tea and remind Aunt and Uncle to keep warm in the cold weather, stay safe indoors.  The visit passes quickly and when its time to go Uncle takes my hand and says “keep looking after yourself, once there were lots of us but now there are few. We don’t want to lose any more.”  So true.

I wonder if there’s a point in our lives when we come to realise time slips through us quickly, more quickly than we might appreciate? If so, does the realisation change the way we view the world and go about our lives? Perhaps our experiences ordain when that point might be and make it dawn earlier for some than others, if at all?  As ever there are so many questions that seem to have so few real answers. 

Another year over and I think perhaps I have reached the point where I appreciate the value of time, how fleeting it is and how far beyond our control it lies. I also realise, and have done for a while, that I am free. Free from worrying about my pension, what other people think, how I look, whether my health will stay stable or my joints will ever improve.  I realise there is no time to waste which means enjoying the time there is, all of it, in whatever shape or form it takes. That is my mission for 2015, nothing more and nothing less.

To everyone who has followed Fecthis, liked and commented, thank you all – your encouragement and support is truly inspiring. To those who are facing cancer afresh or continue to live with it, I send fortitude, love and compassion. For everyone, I send wishes for happiness, well-being and peace in the year ahead. You are all amazing and you all deserve more time than human form allows.

Happy New Year

Happy New Year

In about eight hundred days…

imageThe here and now may not be perfect but its an altogether better place than where I was around 800 days ago. Eight hundred sounds like a lot when you add it up in days, but in years it’s less than three. Just a tiny fraction of the longevity most of us hope to achieve in our lifetimes.

Long before my tussle with cancer began I developed a trait that has proven increasingly useful, particularly during the most challenging four hundred of the eight hundred day mountain climb I’ve taken on in the last few years. Though I haven’t consciously cultivated it, and on occasion even considered it problematic, looking back I can see just how helpful it’s been when the world seemed to be coming undone. Some might call it mindfulness or being in the present, others might say its selective amnesia. Whatever it is and however it happens, closing down frightening, painful or just plain bad memories so they no longer invade daily thoughts or conjure negative emotions is something I now consider a blessing. A body marred by the evidence of physical surgery and some serious chemical bombardment doesn’t need to retain a matching set of psychological scars.

As far as I can tell being anchored in the past makes it impossible to live in the present or imagine anything might have the potential to be different in future. Like many others dealing with cancer, my future is far from guaranteed but being permanently bonded to the fear, confusion and isolation that come with a cancer diagnosis isn’t something I want to sustain. Taking the lessons from past experiences is important, constantly reliving them isn’t. Closing the door on negative memories and the emotions that went along with them has helped me remain relatively calm and stable during some very unstable situations.

It’s about two and a half years down the line now and small signs of normality continue to emerge. A visit to the oncologist last week resulted in confirmation that all seems well so from now on we move to annual rather than six-monthly check ups. There are some things that won’t improve or mend – ankles, knees and hearing – but that’s fine, I can get by with them as they are. The same isn’t true of cancer and though I like my oncologist, I like the thought of a year away from him much more. Being able to go out in public without looking like a medical experiment, walking like a very senior citizen (well over 100) or having what appears to be a constant cold are all welcome steps forward too. They’re small steps but that doesn’t matter because they all contribute to renewed invisibility – it’s hard for chemo patients to blend in! – improving agility and a general sense that slowly but surely, health is beginning to return.

Stiff, Sore, Sanguine and the Six Million Dollar Man

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Not so long ago the oncologist told me the issues with my knee and ankle joints (swelling, pain, unpredictable weakness, immobility) were most likely permanent. For many people joint problems during or after Herceptin treatment aren’t an issue. I was unlucky. Unknowingly susceptible to one of the infrequent side-effects and despite a ‘treatment holiday’ at infusion six, my joints never regained their pre-Herceptin condition.

Twelve months down the line there was very little improvement so it seemed painkillers would be a regular feature and thoughts of becoming an Olympic athlete would have to be abandoned… Truth be told I never planned on being an Olympian or any other kind of athlete but after enduring an aggressive suite of cancer treatments I hadn’t planned on being fettered by my own limbs either. The thought of indefinite consumption of heavy duty painkillers rested heavily in the place between conscious awareness and mind over matter. I’ve wrestled with this issue more often than I care to admit. The oncologist advised go easy on the joints because there are no real solutions. He’s incredibly well-researched and I can’t fault the care he provided during my time in treatment.

Reluctantly I accepted ‘recovery’ as a multifarious term extending well beyond the bounds of cancer itself and somewhere in the distant past I remembered watching the ‘Six Million Dollar Man.’ I recall very little about the TV show except the opening credits. The strangest things are lodged in my childhood memories and I hear the faceless male voice saying something along the lines of “we can rebuild him, better than before…. Better, stronger, faster…”. I think $6m man was some kind of cyborg and strictly speaking I’m not so far away from that myself. As a partially synthetic pig/silicon/human hybrid I’m a long way from better, stronger or faster but I refuse to relinquish the “we can rebuild” part.

Of course rebuilding takes time and effort and is not without pain. I mind over mattered my way much further along the Tarka Trail than I intended and as expected there are consequences for such stubborn behaviour. The Tarka Trail is a traffic-free footpath and cycle track running well over 100 miles through beautiful North Devon. My journey was very modest compared to the total length of the trail but it’s the longest cycle ride I’ve been able to entertain in the last few years and I’m incredibly stiff and sore! My legs still work in a fashion and I’ve burnt more calories than I’ve eaten – two welcome benefits of the day’s excursion. More importantly my “we can rebuild” or to be more accurate, “I will rebuild myself no matter what” philosophy will, I am sure, pay off. I have no illusions about being better, faster or stronger than before – as good as I was will do just fine. Tomorrow I might find I’m completely immobile as well as stiff and sore. Yet I’m also feeling rather sanguine. I put myself to the test and nothing really awful happened. The unintended consequences of cancer treatment cannot defeat me.

It may not seem like much but that one piece of knowledge is worth far more to me than a six million dollar rebuild 🙂