Close the door, keep walking

Close the door, keep walking

Wherever you are, whatever your situation, I wish all readers much happiness, love and wellness for everyday of 2018, these are life’s greatest riches and I hope you find them in abundance.

2017 was a difficult year for us. Although there were some high points, there were also terrors. The kind that bring sleepless nights and frantic days. We learn from all experiences, the good and the bad, but last night we pushed the door firmly closed on 2017.

The wonders and possibilities of 2018 are most welcome because the last 365 days have been a long, hard slog. Though the desire to wipe away the past is strong there are tributes to pay and deep gratitude to note before moving on:

  • For the medics who helped J survive meningitis and J’s will to recover from a very traumatic experience
  • For my father who continues to help others and spares little thought for himself
  • For our journey to the furthest reaches of Norway and our once in a lifetime experience of the Mirrie Dancers
  • For friends and family across the globe, and loved ones lost but never forgotten
  • For food, clean water, warmth and shelter – all so easily taken for granted yet still beyond reach for far too many
  • For life, however long it lasts, because every day is a day further from cancer. This year will be my sixth post-diagnosis.

This new year has barely started but it comes complete with some significant milestones for us, big events that will shape the future in ways we can’t fully imagine as yet. It also comes with lots of blank canvas, new days ready to receive whatever memories we chose to paint there. We are a family of three, and all three of us have brushed with death at an age that is far from being “old.” So as we continue this journey we remain optimistic about the possibilities that lie ahead. There is much to explore and too little time to grumble along the way. We know now that wherever the path takes us, we’ll make the most of it and keep walking on. It is, in every sense, a happy new year.

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Liberté, égalité, fraternité: when will we cure our obsession with self-destruct?

Today I’d intended to write about the never ending story that is breast cancer: discovery, treatment, reconstruction (or not), revision, reflection and resolve. Those things are, quite literally, close to my heart. But I can’t concentrate on the horrors of breast cancer because my mind has been consumed with the horrors of terrorism and my heart goes out to the people of Paris.

Credit: Skyrock.com

I’ve had two spells working in Paris. The first in the early 2000’s involved regular time in a grand office in the 10th Arrondissement. By day much of my time was spent at my desk, in meetings or running workshops somewhere inside the building. Arriving well before 9am, staying beyond 7pm and failing to stop for lunch would frequently prompt questions and jokes from my French colleagues. “Why do you English always work like donkeys? You are silly to work like this. The French way is far more civilised” they would say. As a guest in my colleagues’ country I couldn’t argue with this so would join them in the joking.

I quickly discovered that the French way was more civilised at every level. Coffee and pastries in a nearby patisserie before starting work, an hour or two for lunch in a local café and then home or more likely out for dinner by mid-evening and an opportunity to explore one of the capital’s many fine restaurants. Dinner, the pièce de résistance, presented an opportunity to partake in another leisurely meal carefully consumed so as to make the most of an evening with family or friends. My French colleagues savoured time with each other as much as they savoured the wine or the food. I didn’t need to be in Paris too long before I began to favour the French way too.

My second spell in Paris arose in the late 2000’s when I worked for France Telecom. Their offices lay just beyond the Periphique to the south of the capital but since that area was largely residential I spent my evenings in Montparnasse. The hotel was good for people-watching and the local cafes and restaurants were vibrant and welcoming. Theatre goers mingled with groups of work colleagues, families mingled with couples and local residents mingled with overseas visitors. The City of Light was a sensuous, sophisticated and sociable place to live, work and play.

Today the City of Light is shaken, sombre and trying to make sense of multiple acts of wanton violence, acts designed to kill, maim and terrorise innocent civilians during a typical Friday evening in central Paris. The faceless, nameless, shameless perpetrators no doubt believe they committed these acts in service of some greater cause, to right some deep-rooted wrong, or to demonstrate conviction to the will and way of whichever god they happen to subscribe to. Whatever the reason, the streets of the City of Light are once again stained with blood and innocent people lie dead or injured.

Modern humans evolved c.200,000 years ago and civilisation (such as it is) c. 6000 years ago. We claim to be the most intelligent species on Earth yet we appear to change at a glacial pace. Our ability to curb our most primitive, tribal and often superstitious belief systems, to learn from the mistakes of the past and fully embrace our diversity is questionable at best. Events like the one in Paris quickly become visible across the globe but look closer to home and you’ll find stories of cruelty, violence, bullying and abuse right on your doorstep.

Humanity seems destined to prove it is the most dangerous, spiteful and debased species that has ever inhabited the planet and Paris, sadly, is the most recent in a long line of atrocities. When will we learn and how many more 13/11’s, 9/11’s or 7/7’s must we endure before we finally cure our obsession with self-destruct?

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.

This little piggie

I am part pig.

When I was diagnosed with cancer and opted (fortuitously) for mastectomy with reconstruction instead of wire-guided lumpectomy my consultant used adermal cellular matrix (ADM) to make a pocket for the silicon implant. ADM is specially prepared pig intestine and in the UK it’s expensive, so much so that the Chief Executive of the healthcare trust had to approve my consultant’s plea, prise open the NHS coffers and sign a purchase order for another few thousand pounds worth of cancer treatment on top of some equally expensive Herceptin.

I feel hugely grateful that my consultant went above and beyond to get the right materials for reconstruction, and that she’s so skilled and up to date with plastic/microsurgery techniques. She is truly amazing in all senses of the word. At another level I remain somewhat conflicted because an intelligent and sensitive creature gave up its life so that mine might one day return to something approximating normal. That creature – a specially bred pig – didn’t get the ‘tick here to opt out’ box and as a result part of it is now very much a part of me.

On Monday I returned for my annual follow-up and “what next” discussion. Cosmetically there is plenty of tidying up that could be done but I’m not bothered about aesthetics. For me what next has always been removal of the other, “good,” breast before it starts wreaking a trail of destruction through my life. I know too many women whose “good” breast went “bad” after being assured contralateral breast cancer is very unusual. It’s nowhere near as unusual as they or I would wish. For my consultant the original priority was to get rid of the active cancer and start systemic treatment. High grade HER2+ tumours have a propensity to spread and on balance I conceded that dealing with active cancer was our joint priority; we’d return to other potential sources of untimely death later on, when my life wasn’t so readily at stake.

Later on happened to be Monday when we went back through the roll call of women in my family who’ve died of breast cancer at 50 or younger. The list is depressing, more cataclysmic disaster than family tree and although I’m now well versed in talking about it from an emotionally safe distance it retains an ability to trigger unwelcome thoughts and pitiful images. Things I’d rather not recall.

Multiple generations – 8 or more women – wiped out by breast cancer leaves the current generation (me) increasingly convinced that highly predictable trends seldom stem from random coincidence. I am and always have been in a very high risk group. Two decades attempting to convince various GP’s something is amiss in my version of the human genome and finally my consultant declared point blank that she too is absolutely convinced. Coincidences on this scale are not coincidental – her words, not mine. Whilst she’s optimistic science will unravel the faults in my DNA within the next 5 years she’s mindful that 5 years waiting for another high risk (highly predictable?) cancer event to materialise is unacceptable. We’ll be going to theatre again, the fourth time together, just as soon as a slot for surgery comes up. We’ll also be calling on another of our porcine friends so silicon implant no. 2 has a suitable pocket to rest in.

Once this surgery is complete I’ll definitely be ‘this little piggie,’ more pig and plastic than human female. The thought is both comforting and disconcerting.

I stand facing another major surgery which is not without consequences. There’s a chance untoward change is already happening in there (we have to cross that particular bridge if we come to it). There’s a chance things might go wrong – infection, haemorrhaging, skin death. Even if all goes well the surgery doesn’t come with an ‘opt out of breast cancer forever’ guarantee, it reduces risk, not the same as removing risk entirely. Ideally no other animal would have to lay down its life for me but it seems that’s an unavoidable part of this cancer dance too. I guess one way or another the unlucky pig would’ve ended up consumed by humans. At least this way it won’t be turned into sausages…

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 🙂

What it’s really all about…

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I had a birthday recently. There was nothing special about it in terms of the number of candles that might adorn a cake and I didn’t do anything special except enjoy the day, but the fact that it happened was significant. The fact that as far as I can tell I’m healthy and free of cancer is definitely something to celebrate.

Just over two years ago there were no guarantees I’d see another birthday because every investigation seemed to turn up something more worrying than the last. Of course there are never any guarantees, we simply assume the years will keep rolling in and nothing terrible will happen. Then something terrible happens and with luck we wake up and realise how important every moment really is. Even the ones that seem less than awe inspiring, like a trip to the supermarket or being stuck in a traffic jam. When you think your moments may be limited you find ways to make the most of them, including traffic jams!

There have been many special moments so far this year and my birthday brought some more because my son decided that, like the queen, I should be granted a second birthday with a second card, presents and flowers. In an unexpected way it helped erase some of the difficulties of the blighted birthdays, the ones spent in hospital or recovering from surgery. During those birthdays my thoughts were centred on endurance, making my way through whatever had to be endured so that I would see him through his education and hopefully some years beyond.

There are still no guarantees, from here on there never can be but then again, there never were. What matters is that I’m here, I’m happy and I have more time to make life special for those around me. It feels a little safer to make plans, to think about what we might do to celebrate my son’s next birthday in 10 months time. That feeling is a bonus, a subtle, positive change for the better after time placed on hold, living in limbo. Cancer took away so much but it also brought new insights. I no longer let time slip through my fingers, I use it to make memories with those I hold dear. That, for me, is what life is really all about.

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