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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Stocking confessions

For anyone who thinks stockings are a throwback to the 40’s and the post-war frenzy of the nylon riots, fear not. Stockings are alive and well and making a huge comeback in my household and the homes of countless other women across the globe. These stockings are immensely functional, have a hint of sheen, an open toe and a block heel. They also have a small seam. They’re manufactured by a German company but I don’t think it’s Falke, which is a shame because Falke make good stockings. Falke or fake, I’ve been persuaded to wear these very special stockings for at least the next two weeks because I’m reliably told they are a lingerie lifesaver, for me and others like me.

Of course no stocking is ever perfect and often we have to contend with bad length, limited silkiness, wonky seams and the like. Length and texture are certainly a bit challenging though it’s fair to say I’m tall. A further downside is that they only come in white and the denier rating is a bit on the high side, easily twenty-times greater than the best pair of 5 deniers I ever owned. (Back in the days when stockings were at least as important as non-chip nail polish, 4 inch heels and a big can of Elnet.) However as I’ve already indicated they’re extraordinarily functional, extremely unlikely to ladder or run, afford excellent durability – they’ll survive at least 100 washes in the automatic machine but more likely 10,000 – they’re warm, and of course their unique selling point is the all important lingerie lifesaver label. Who could possibly resist?

I have a love-hate relationship with these stockings. They represent all that’s been difficult in my life yet they also represent hope, the chance of a future. They’ve kept me out of trouble on at least 5 separate occasions including today and will do so for another coming up in the not so distant future. It appears they’re very well designed to prevent unwanted pregnancies, ward off perverts (bet you didn’t think stockings could do that) and double-up as flight socks for anyone planning to jet across the planet or sign-up for Virgin Galatic. I suspect there’s every possibility of remaining a virgin for centuries in these beauties but its also reassuring to know I’m very unlikely to suffer a DVT (deep vein thrombosis) following  my trip to theatre today.

No, I didn’t see Miss Saigon but I did meet three very nice male anaesthetists, a lovely lady theatre nurse, a fabulous and stunning staff nurse and of course my all time favourite Miss M.  I didn’t have to wait around as I was first on the list for surgery which is good for all sorts of reasons and I think (hope) I’m now at the end of all cancer-related surgeries, revisions and repairs. Das ist alles as they say in Falke.

As with the stockings, rarely is anything completely perfect and though I warned of the heinous condition of my left side veins the consultant anaesthetist suggested the junior anaesthetist should “go for the one looking sort of ok-ish below the left index finger.” So he did, it didn’t work, I felt incredibly sorry for him – its my fault not his, and consultant anaesthetist then had to prod my right hand which was equally touch and go for a while. We got there in the end and consultant anaesthetist apologised to his junior and to me saying “I’m sorry, we should have listened as you do know your veins well.” Far too well for my liking, an intimate knowledge in fact, and so accurate that I pity anyone who has anything to do with them. Another reason on the long list of reasons why I’m very glad das ist alles on the cancer-related surgery front. (Gall bladder next and that really should be it, all done, cyborg here I come!)

After morphine and Fentanyl for the operation itself, a combination that makes me wonder why anyone would become an addict because the effects are so way out they are completely bewildering, not enjoyable, I’ve resisted any further pain killers and feel much better for it. After swimming in drugs through much of 12/13 I now steer clear as far as possible. This post-op discomfort is well within the realms of manageable, a reflection I think on the skills of the surgery team. I’m told healing is 3-6 weeks, nothing at all strenuous for 6, no driving or work for 3. That’s a real challenge because my job needs a lot of attention, the university is extremely busy, we have students to recruit, systems to develop, projects to deliver and as ever, IT problems to resolve.  Aside from all that, 3 weeks of daytime TV is almost certainly bad for my health (and sanity) and my favourite recuperation past-time – growing things to eat –  is off limits. No digging, hoeing, mowing or sowing.

So while I contemplate what to do while doing very little and avoiding as much daytime TV as possible I leave you with a photo of my souvenirs from today – port and starboard – complete with coloured gauze and post-surgery puffiness.

I couldn’t post the stockings, they’re far too risqué!

Trapped in a Well with a Crocodile (or cancer)

Have you ever been trapped in a well with a crocodile?

 

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ONE FALSE STEP… (Image: http://www.sundayobserver.lk)

Captive in a limited space, confined and confused by the darkness, unable to gain a foothold because you can’t see through the dense thunderhead all around you. Making sense of this foreboding abyss with its slippery walls, isolating silence and icey cold waters is petrifying… and that’s not all.  Somewhere in the well lives a crocodile. It’s in there but you have no idea exactly where it might be. It might be far below  or about to break the surface. It might be about to seize you in a death-roll or look you straight in the eye. It might bite you once then leave you alone.  You know you need to get out and all the while you imagine how powerful that crocodile is, you sense its huge mouth and razor-sharp teeth.  You want to break free yet you know the crocodile might just as easily  swallow you whole.

When I was diagnosed with an aggressive cancer in 2012 my relationship with my body changed.  Instead of seeing it as a safe haven, a place where my sentience could frolic, it became the well.  I was trapped inside and in there with me was a crocodile called cancer.  I knew there was no way out of the well and I knew a death-roll with a crocodile was a bad idea.  Losing part of my body was better than losing my life and so, for me, the journey through surgery and chemotherapy was better than letting cancer swallow me whole.

Whenever I could I tried to turn any negative thoughts into more positive ones. Having surgery meant removing the obvious signs of cancer from my body and that was a good thing.  Undergoing chemotherapy (something that frightened me because I’d witnessed my Mother’s experience) meant targeting any remnant – rogue cells that lurked in my body as yet unseen. Although the side effects were unpleasant, the chance to stop cancer biting me again made treatment  worth the time, effort and side effects I encountered.

We all have different views on our bodies, on our femininity or masculinity (because men get breast cancer too). We all have different views on what makes us who we are, which pieces of ourselves we love or loathe, the things that make us ‘normal’ or ‘a freak.’ In Western society it seems so much of who we are becomes entangled with how we look that any affront to our physical wholeness becomes an assault on the very essence of our being.

When faced with cancer the prospect of surgery means facing the prospect of never again being physically whole.  Keeping a sense of perspective when nothing much makes sense is important. I realised quite quickly that my life would  not depend on physical wholeness, but it would depend on eradicating the cancer that had taken root in my breast.  Viewed in this way the prospect of mastectomy also became an opportunity to prolong my life.

As it turned out, mastectomy was the correct choice. Aside from the cancer I’d discovered for myself there were areas of high grade DCIS and atypical hyperplasia, both of which had the potential to become new cancers in time.  Having exchanged one cancer containing breast for a silicon fake it seemed counter-intuitive to retain the “good” breast in the hope that the cancer crocodile would only bite me once.

Two year’s after my initial cancer encounter I was able to complete risk-reducing surgery – mastectomy and replacement of the remaining breast with another silicon fake.  I can honestly say I’m glad I did.  As research progresses we learn more and more and it seems DNA changes are already present in the healthy breast tissue of women with cancer. My family history made having breasts a game of Russian roulette. If anything, I wish I’d fought the system more rigorously to undergo risk-reducing surgery before finding myself facing cancer head on.

Its been a long journey. This summer will be four years since my original diagnosis and my trips to the operating theatre are still not quite complete.  In a few weeks I’ll be in for some revision work, things that need to be taken care of following the original surgery of 2012. In the grand scheme of things it’s very trivial, a small price to pay for the four years of life I’ve enjoyed so far.  I’ve learnt that my body is not invincible, that hidden dangers may lurk beneath the surface and things go wrong even if we do our best to adopt a fit and healthy lifestyle.  I’ve also learnt that I don’t really care about my fake breasts, my Herceptin damaged joints, or my lack of physical strength, I can exist quite happily with all those little niggles.  The things I care for most – my family and friends – can only be taken care of if I’m here so preserving my life was always going to be more important than preserving physically beauty, ‘normal’ femininity or bodily wholeness.

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

Something to Remember

There’s a saying that “It’s the moments, not the milestones, that matter.”

21 is a significant milestone and I think it’s still worthy of a whole bouquet of memorable moments, even if it’s no longer the age of coming of age. So when we set off for our trip to London me and my son had simple aims – generate many enjoyable and memorable moments, celebrate his 21st birthday before, during and after the day itself, and create something special we’d remember for the rest of our lives.

I said in my previous post that regaining the time stolen away from us by cancer, depression and a bunch of other adverse events over the last few years was impossible. In terms of linear time, the kind measured in seconds and hours, that’s true. We cannot go back and rewrite the past.  Non-linear time is a different story because it’s measured in friendship, conversations, smiles, laughter and small kindnesses. Those things evade the confines of seconds and hours, they’re unbounded and run through our lives like invisible seams of gold. Humanity’s obsession with longevity measured by defined units of time can lead us to forget that our dearest memories are woven from the gossamer strands of innumerable moments, each of which is infinite and everlasting.

This week the moments meant we both forgot the stresses and strains of the past, the things we couldn’t do, can’t change, gave up or had to cancel. We forgot death came calling, ignored the various absurdities of our lives and created a sparkling sea of moments unfettered by time, tasks or the uninvited terrors of sentience. We rode the tube, walked the embankment, wandered around Soho and dined in China Town. We went to a couple of bars, ate birthday cake, people-watched and admired the landmarks. We received an unexpected upgrade on our theatre tickets so had the best seats on J’s 21st birthday… Thanks Palace Theatre 🙂 We talked about previous birthdays, growing up, options to make this an annual mini-holiday just for the two of us,  the places we’d like to visit and things we’d like to do.

We set off for London with a few simple aims – celebrate, enjoy, make memories and we did that. Our mission was fully accomplished in one tiny, profound moment as we walked back to our hotel along the Charing Cross Road.  “You know Mom” he said, “I’m enjoying our time so much I don’t want it to end. I wish this could last forever…”  We smiled at each other both knowing that it will.

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

B4Peace Monthly Peace Challenge: I have a dream…

dartmouth 22july2013 2013-07-22 024

 

 

 

It’s hard to believe that these steps were once the haunt of privateers, pirates who preyed on French and Spanish vessels stealing their cargo and murdering their crews. That was almost 700 years ago and times have changed though not as much as we might think. Almost 70 years ago in June 1944, four hundred and eighty ships sailed from this port to the Normandy beaches. Operation Overlord saw 160,000 soldiers land at five points across a 50 mile stretch of the French coastline. They were supported and aided by over 195,000 allies and merchant navy seamen.

It is estimated that 60 million people, nearly two-thirds of whom were civilians, died in World War II.  The equivalent of the entire populations of the Bahamas plus Iceland plus French Guiana plus Qatar  plus Lithuania all lost their lives over a seven-year period. If every person in these five countries was to suddenly lose his or her life the rest of the world would proclaim it a disaster and rightly so. Fighting for peace by killing ‘the enemy’ is victory by disaster, death and destruction.  Life is sacred yet in times of war we forget that all and any loss of life, ‘them’ or ‘us,’ is a tragedy.

I have walked the WWII cemeteries many times, seen row upon row upon row of brilliant white crosses standing silently amongst the lush green grass. This war was before my time and I did not know these men yet my sense of loss is palpable. I try to remain detached, a quiet observer paying respect to those who lost their lives so that I could live in freedom today.  I try and every time I fail. I cannot walk among these graves devoid of emotion. I cannot detach myself from the pain and fear and suffering even though I was not here, not even born, when disaster came to call.   A deep and mournful sorrow constricts my heart squeezing so hard that I think it might break. Tears stain my face as the silence seeps into my soul. These are soldiers graves. I do not know where the many millions of civilians lay in the dark, dank earth. No doubt their bodies are strewn in graveyards across three continents, or lost along with some of the soldiers whose remains were never found.

 

Ardennes American Cemetery

 

 

 

 

Massicault War Cemetery

Massicault War Cemetery (Photo credit: stevie.gill)

 

 

 

 

 

 

And so I have a dream…

 

I dream that my child, his children (if and when he has them) and his children’s children’s children never bare witness to loss of life, whether one life or millions, simply because humanity is insufficiently evolved to settle its differences through peaceable means. My child, of course, has already borne witness – to Iraq, 9/11, 7/7, Burundi, Nepal, Kosovo, Ethiopia-Eritrea, Congo, Chechnya, Gaza, Afghanistan, Syria and countless others. I wish it were not so and I hope that by the time he is my age this feuding will have ceased.  I dream that our children and their children’s children’s children live in a world where differences are accepted and valued, prejudice is long since forgotten, wealth is not hoarded by the rich, food is not withheld from the poor and where religion serves only to forge a common bond, preserving our faith in the sanctity of all life on Earth.