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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Cast out the old year, seed something New

I lost a friend to cancer just before Christmas. She wasn’t old, lived healthily and did all the ‘right’ things but her encounter with the emperor of all maladies was shockingly brief. Just 5 months from diagnosis to death, treatment offered no respite. I attended her funeral yesterday and am still stunned. This year brought more than its fair share of rain and though I cannot afford to wish my life away – every day is a gift – I will be glad to see the end of 2015.

Cast out the old year, seed something new

2015 – A year of worry buried deep

A year of struggles, strife and grief

A year of friendship cut so brief

A year of making angels weep

The year will pass and trouble with it

The year will pass, it’s reached its limit

The year will pass, now almost through

The year will pass having taken you

2016 – New Year is edging ever near

New Year will vanquish harsh frontiers

New Year will cast aside old fears

New Year will keep your memory dear

 

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 🌠

A small star of wonder

There are few miracles in Cancerland. Many of today’s treatments are founded on surgeries, chemo and radio therapies that have been around for decades. The concept of mastectomy has existed for centuries, though thankfully surgical practice has improved significantly in that time. Cancer research is resource intensive, costly and for every positive advance there are many more that fail to deliver useful results.  

As a recovering cancer patient, thinking about all of this is a daunting prospect. So many race for the cure because no-one wants their life cut short by cancer. Yet the cure continues to elude us and every day there are tears and condolences as more of our number depart the human race.  This, all too often, is the stark reality of Cancerland. It makes the psychology of cancer equally as challenging as the disease itself.

Science has not given up though and for those of us affected by this odious illness, from time to time there are breakthroughs, stars of wonder that shine a ray of hope into what might otherwise be a very stark world. Since being diagnosed as HER2+ I’ve hunted down as much information as possible about the ramifications of my particular cancer subtype. I am the kind of person who needs to know what she’s up against and until recently it painted a very challenging picture. More aggressive, more difficult to treat and more prone to early metastasis are not the kind of facts I hoped to discover. Without the advent of Herceptin my consult had said our initial conversation, the “yes you have cancer” one, would have been followed by “and we’ll do as much as we can but the outlook isn’t good.”

Unable to resist the urge to undertake my own research, I quickly discovered that members of the HER2+ community seemed to be dying at an alarming rate, even if their cancer was diagnosed early and they’d undertaken aggressive forms of treatment. In 2012 a long knife skewered my heart. The “yes it’s cancer” part was unpleasant but it wasn’t a complete shock. The HER2+ part was a twist of the knife, unknown territory which soon became a gargantuan challenge. Though my treatment is over my quest for research did not subside and as we approach Christmas 2014, the season of peace and goodwill,  a small star of wonder shines for those who are HER2+.

The survival benefits of Herceptin have been assessed in long term research, the first of its kind because Herceptin is one of a handful of cancer treatments that haven’t been around long enough to know exactly what the outcomes might be. Earlier this month the Journal of Clinical Oncology published a study that found Herceptin improved 10-year survival from 75 percent with chemotherapy alone to 84 percent with combination therapy – chemo plus Herceptin. The results also established continued improvement of disease free survival – the addition of Herceptin has seen 10-year disease free survival rates increase from 62 percent to 74 percent. As someone affected by HER2 these increases in 10 year survival and 10 year disease free survival are encouraging. They begin to shine a ray of hope in a landscape where hope is desperately needed – 74% isn’t good enough in my opinion but it sure as hell beats less than two-thirds.

It saddens me that, for my friends with metastatic breast cancer, everyone who is stage four at diagnosis, anyone who isn’t HER2+ and all those living in the wrong geography or an insufficient income bracket this discovery offers no comfort. It’s a small breakthrough with relevance for 15-20% of those with breast cancer. I’m part of that population yet there are no guarantees it will be of help to me either. Breast cancer is like that, no-one knows which straw they’ve drawn and reoccurrences can happen well beyond the 5 year “all clear” period.

Uncertainty and unpredictability are part of the fabric of Cancerland and somehow we learn to adapt to that, to cope with an outlook that’s permanently cloudy, but even for the most optimistic among us this becomes psychologically wearing. Coping is marginally easier if the cloudy outlook is perforated by at least one small star of wonder every few years – it seems that Herceptin may well be that kind of star.

 I

Shatterproof

It’s just over two years since cancer darkened my doorstep, turned my world upside down and ripped away some irreplaceable parts of my life.   The body I live in is not the one I grew up with, the scars I carry aren’t restricted to my chest and my days are all a little less carefree than they used to be. Cancer is cunning so ongoing vigilance is unavoidable. Vigilance means thinking about it, checking for it, watching, listening, monitoring, observing. The last thing a cancer patient wants to do is think about cancer, the sensible thing is to remain forever aware.

Recently I returned for a follow-up mammogram, part of standard cancer patient after care. (According to NICE guidelines I should be offered an MRI – so far that hasn’t been forthcoming and doubtless it’s all down to cost). The mammogram result came through earlier this week with a letter that says “there were no signs of abnormality which is obviously reassuring news.” I struggle to get excited about it or breathe even the smallest sigh of relief because this news isn’t completely reassuring. I had a false-negative result before and a piece of paper stating no sign of abnormality could so easily have sealed my fate. Fortunately I favoured instincts over x-rays on that occasion, a decision that almost certainly added a few years to my life.

.Embed from Getty Images

Its only now, a while down the line, that I can look back with some clarity and say the last two years have been  physically, emotionally and psychologically tough. The profound uncertainties, constant ambiguity, twists and turns of every medical procedure all the while never quite knowing if the picture was complete and true. The disappearing acts, privation and injustices, because a broken spirit is, of course, the ideal accompaniment for a broken body and traumatised mind. The toll of treatment, the obvious and not so obvious impairments and the side-effects that are permanent not temporary. The maelstrom raging over the last couple of years might have proven all-consuming, it’s  brutality, ferocity and relentlessness shattering mind, body and spirit into a kaleidoscope of jagged shards each too small and uneven to form anything other than an unsightly mess.

I’ve learnt a good deal through this tumult of experiences. The instability, nihilism, dispossession and  separateness. The labels help paint an accurate representation of a time that rendered more chaos and confusion than any other in my life. Yet I’m here and they’re just labels. They summarise a point in time but they are not me. . .    It seems unlikely anyone could endure a period like this without being a tiny bit broken as a result, but this damage doesn’t have to be irreparable. I will always be incomplete, imperfect and scarred and in spite of those things I’ve learnt what it means to be unrelenting,  intrepid and shatterproof.

 

Half a World Away

Goldfinches against a Cyan Sky

Goldfinches against a Cyan Sky

 

It’s a beautiful morning. Since the beginning of December I can only recall one other day without rain and that seems like a very distant memory. At work on Thursday we joked that the Mayans may have correctly predicted the end of the world – it’s simply coming along a bit later than expected. They were ancient people without atomic clocks so what’s an extra year or two on top of a few centuries?

Looking at the clear blue sky today is not the day it all ends and I’m happy that’s the case.

This time last year it was snowing. Clumps of pristine white snowflakes were swirling around me like the stuffing from expensive duck down pillows. January and February both saw fairly significant snowfall, at least by UK standards. Out here in the countryside the drifts were over six feet high and I walked the lane crunching my way through the freezing blanket to take photographs in a completely silent landscape. When snow muffles everything the silence takes over – no road noise, no rustling trees – and with silence comes stillness. The fields and hedgerows slip into a moment of frozen tranquillity.

Silent stillness always draws me out into the chilling air. Wrapped in a thick winter coat, huge scarf, fingerless gloves (so I could operate the camera) and my woollen cable-knit baker-boy cap I trudged down then up the lane, a walk that normally takes 10 minutes but needs at least 20 in heavy snow. The horses at Holly Farm had taken their leave and retreated into the stable but every tree and shrub along the way was alive with small birds foraging for food. When the snow comes the need to eat overcomes the need to fear humans, the birds will take seed at your feet if you’re still enough. After walking the lane I was cold and tired but a cup of hot chocolate soon addressed both.

How do I recall this scene so readily when it was a year ago? I’d just received my final round of Taxotere. I was hairless, as pale and translucent as an undernourished vampire and completely strung out on steroids. There are few things I detest and dexamethosone is one of them so if I never have it again that’ll be just fine with me. Looking back the whole scene – the snow, the chemo unit, the regular blood draws, the side-effects – it feels half a world away. It almost seems unreal and if it weren’t for the tale-tell signs all over my body (and embedded in my psyche) I could almost convince myself it was a very bad dream.

Almost.

Today there’s no snow. The tall trees opposite the window are gently rippling so there’s a breeze. The sky is the most beautiful cyan blue and bright yellow winter sunlight, the kind that is brilliant but holds no blazing heat, is streaming into the room. Small birds are chattering outside the window and the cats who were exiled to the conservatory last year, are happily curled up by the fire for an after-breakfast siesta. Today is a very beautiful day and it seems that all is well in my wonderfully bizarre, confusing and ever-changing world.

Half a World Away

Lessons from the Feisty Blue Gecko – Amity, Moderation, Repose.

Recently the FBG (http://feistybluegeckofightsback.wordpress.com) travelled to Borneo. While doing so she shared a post about three words to shape her year, a practice she’s been undertaking for several years now. I pondered on this approach and wondered what three words might apply to my past and present years, and what those words might teach me about myself, my aims and hopes for the future.

I own a butterfly mind that resides in the middle a walrus colony. There are many interesting thoughts and ideas but insufficient space (or time) between them to give each the attention it deserves. Reflecting for a moment on why that is throws up my first three words – curiosity, overburdened and driven. Unsurprisingly there are patterns and links between all three.  I like being curious and reasonably driven because that’s the way I learn and keep growing (instead of slipping into a state of mental hibernation). I’m not so comfortable with overburdened as it eventually quashes the other two.

Better choices are curiosity, capacity and pace. Life is, after all, a marathon not a sprint. I’m a useless sprinter!

There are some stand out years in my life for good and not so good reasons. In 1993 the three words were overjoyed, nurturing and amazed. In 1996, overwrought, shocked and escape. 1998 warranted exciting, connected and faith whilst 2008 was ecstatic, proud and supportive.  On balance there’s more to be glad for than not over the past forty-odd years, until the most recently.

No matter which way I look at it, however much I try to stand it on its head, take a different perspective or weigh the pros and cons, I am not glad about HER2 positive breast cancer. I’m glad I acted quickly, took decisive and extensive action and am still here but I’m not at all glad about the thing itself. 2012 was the year of chaos, stark and pigheaded. Pigheadedness coupled with a good medical team and wonderful support from family, close friends and new friends from WordPress kept me in this world instead of contemplating the next.

2013 should and could have been an improvement and in many ways it was, but it was also tainted by the fall-out of cancer. 2013 was a tale of two cities – “It was the best of times, it was the worst of times, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us.” Its taken a while to find just three words for 2013 (without the use of expletives) however those that fit best are distraught, dissociation and determined. The year is over and although there were some positive elements, it is not one I am sorry to see the back of.

So what of 2014, this new year freshly begun and hopefully holding much goodness in store? It did not get off to the best of starts for reasons I shall not enter into here, suffice to say an early morning phone call creating havoc and requiring an immediate solution was not something I’d hoped for. The fact that I was 80 miles from the epicentre did not help. Fortunately resolution occurred and no lasting harm befell anyone, though the events themselves remain puzzling.  My capacity to deal with emergency situations involving those near to me is not as robust as it once was, especially if I’m some distance away. I can think of no good reason for this other than an increased sense of the fragility of life.  So the first of 2014’s words is amity – love, friendship and kindliness given freely to those who are dear to me because nothing else is as important. The second is moderation. I can no longer burn the candle at both ends, my time on earth already hit one big bump in the road and I don’t want to invite others. My third word for 2014 is repose. Now more than any time previously I feel the need for regeneration and respite, quiet contemplation and time for recreation.

There are no certainties in life (except death and taxes) but I sense these words will set me in good stead for the rest of 2014. Amity, moderation and repose with, of course, thanks to Feisty Blue Gecko for equipping me with such a helpful philosophy 🙂

Walrus colony - see how difficult it is to squeeze a thought between them? Image credit: Wikipedia

Walrus colony – see how difficult it is to squeeze a thought between them? Image credit: Wikipedia