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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Hopes for the New Year

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2016 has come and gone. There were a few health hiccups for me along the way but nothing compared to the amount of grief and suffering in the world at large.  Now 2017 is here and already people are committing atrocities, inhumane and yet so tragically human. My hopes for a peaceful new year will just have to lie dormant for another 364 days and see what 2018 brings. Something tells me it’ll be much longer before we all wake up to find our planet free from strife with every vestige of humanity behaving as truly civilised. I live in hope though, as I’m sure many others do.

Since world peace is well beyond my capabilities, my hopes for 2017 are considerably smaller and more intimate.  While many people have been enjoying the Christmas break, work, study and revision (a lot of revision) have been the order of the day for our family. So my first hope is that those of us who’ve been working get a break and those of us who’ve been revising pass our upcoming exams and settle in to our placements for the year ahead.

My next hope is that my friends and family stay happy and healthy in 2017.  Last year was something of a trial for most of us and in the end we weren’t unhappy to wish it goodbye.  None of us is equipped to deal with too much death, despair and difficulty in such a short period of time.  I know I’m still a bit worn down by it all so a less eventful year on the bad news front together with positive physical and mental wellbeing for all of you is my wish this year.

The last of my hopes for 2017 is a personal one because this year marks the 5 year anniversary of my cancer diagnosis.  If I sat down to write all the things that have happened since June 2012, the challenges, the bête noir, the unending uncertainty and the sheer weight of it all I fear I might lose touch with my sanity.  So instead it shall stay in the past where it rightly belongs and I shall hold hope that health-wise, 2017 is incredibly, remarkably and boringly uneventful for me.  Because uneventful means the likelihood of a reoccurrence, whilst never fully extinguished, is considerably diminished from June onwards.

Whatever you leave behind from 2016 and whatever you hope for from this new year, may health and happiness be your faithful companions in 2017 too.

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

 

 

 

Seven words on cancer

Family:

They say blood is thicker than water and it’s easy to see why. My family trudge every step of this path with me no matter how challenging. My Dad remains a rock despite the fact that he’s encountered the journey far too many times before and with no happy ending. My Mum would’ve done likewise if cancer hadn’t robbed her of her life at such an early age. M, J and S remain positive, future-focused and encouraging. They all believe I’ll still be here in 30 years and that’s a wonderful vision to hold on to.

Medics:

These people are amazing. The surgeons, oncologists, sonographers, anaesthetists and nurses are skillful, compassionate and dedicated. Behind the scenes there’s a whole community including  histopathologists, biomedical scientists, pharmacists and nutritionists to name but a few.  They’re the driving force behind cancer care and cancer research. Many of us would not be here without them.

Invincible: 

We like to think we are and then we find we’re not. Deep down I’ve always been acutely aware of the fragility and vulnerability of all life on our beautiful blue planet, including my own. I spent 35 years attempting to ignore this until cancer provided an uninvited reality-check. So now I know I’m not invincible but I also know I’m more robust – physically, mentally and spiritually – than imagined.

Friends: 

Whatever the weather some friends will weather the  storm with you. They’ll offer to do things for you (or do things anyway because they know you’re too proud to ask), they’ll help put you back together when you’re in pieces and remind you of all the reasons you need to hold on. Other friends will abandon ship. The wife of a friend explained this to me when I was first diagnosed and I thought her judgement somewhat harsh at the time. We stand by our friends when they’re sick or dying don’t we? I owe her an apology and at the same time I give thanks to the all-weather friends who opted to stay with me.

Health:

Must never be taken for granted. Fit and in the prime of life one day, nose-to-nose with death the next, the turnaround is quite a shock. When the shock subsides a subtle awareness of the uphill journey from illness to wellness begins to dawn and the distance seems so vast. It’s also full of boulders and sinkholes.  I never loved my body but I didn’t hate it, even though it was pre-destined to let me down. As a receptacle for my soul it continues to serve it’s purpose and I’m grateful for that. But it doesn’t feel like me anymore and for however long I’m here, I’ll never be able to trust it again.

Time:

Does not last an eternity. It passes in the blink of an eye and once its gone it can’t be revisited.  Time is too precious to waste so life-changing events shouldn’t be the catalyst for this vital life-lesson. If the art of valuing time was taught in high school,  future adults might stop deluding themselves that they have all the time in the world, plenty of years ahead and are guaranteed to reach a ripe old age. Write all the time related clichés you know on a piece of paper and safely set fire to it. See how quickly it burns?

Death:

We all die. From the day we’re born it’s a one-way ticket and a completely natural part of the circle of life. Developing cancer makes death impossible to overlook and also brings the very real possibility that it will arrive much sooner than anticipated. There’s no getting away from this, no amount of worrying or soul-searching can change the shape of things to come. All I could do was find a way to live with it and in doing so savour every second of every minute of life in this very moment.

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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 🌠

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.

Stumbling Blocks and Stepping Stones

“The difference between a stumbling block and a stepping stone is how high you raise your foot.”

“The difference between a stumbling block and a stepping stone is how high you raise your foot.”

The risk of developing breast cancer before the age of 80 is 21.1% for those with two affected relatives. Assessing my own risk is no case for Sherlock Holmes because at least five generations of women developed and then died from metastatic breast cancer before the age of 50. Wondering ‘why me?’ when I received my own diagnosis in 2012 seemed a little pointless.  A better question was when, not if and had familial breast cancer been better understood fifteen years ago, none of this might have happened. It did and I’ve learned how to accept and deal with it.

Failing to avoid breast cancer is one thing, being thwarted by genetic stumbling blocks and uninspiring statistics is quite another. My consultants say genetic aberration is responsible for the decimation of the female branch of my family tree. On that basis the obvious answer would be BRCA but as science continues to identify, breast cancer is far more complex than BRCA1 and BRCA2. I have neither of those genes.

In time scientists will discover the fault(s) in my genetic code. With luck, skill and more time they might even establish what to do about it. Until then retaining any unnecessary quantity of natural breast tissue seems akin to playing Russian roulette.. with a powerful handgun and live rounds in all six chambers. I’m not much of a gambler and I cannot change my genes however I refuse to live in fear of the century-long shadow breast cancer casts across my family. I know the choices are limited but they’re still choices and a key piece of my cancer-defence jigsaw just came into view.

On 11th March Miss M. and I have another date in the operating theatre. The final vestige of my female (physical) self will be exchanged for silicon and pig intestine over the course of around 4 hours. I  very much hope its the last in a long line of surgeries because much as I love Miss M., I have an increasingly strong aversion to hospitals. Genes permitting this will be an uneventful risk-reducing mastectomy followed by immediate reconstruction – no need to mess around with nodes, skin or chest wall.

It would be easy to regard more surgery, the recovery period, the possibility of complications and/or unwelcome discoveries as new major stumbling blocks obscuring my route to sustained wellness. I prefer to see it as a well considered life choice in circumstances that might otherwise favour cancer, not me. Deciding to have more surgery isn’t easy, it brings back memories that I hope in time to forget but right now, this is an important stepping stone.

Once the operation is over I move from living with an unacceptably high risk of developing another new breast cancer to living in the knowledge that I’ll have done everything possible to contain that risk. In doing so I improve my chances of staying cancer free. Even the tiniest of improvements is better than none at all.