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

 

 

 

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

 

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?

Tu Me Manques

Cancer is a horrible disease. Even “easy” cancers like breast cancer are horrible. I know this because I’ve had it, most of my family died from it, and a lot of my friends either have or had it.

I’m yet to find anyone who says, “You know what? I’m glad I had / have breast cancer.” No-one in their right mind wakes up one day thinking gee, I must add this to my ‘interesting things to do’ list and anyone who suggests it’s a great way to get a free boob job and some chemotherapeutic help with weight loss is terribly ill-informed. Sadly there are a few women in the world who think this way but the reality is that neither perfect breasts nor a svelte figure are positive outcomes from cancer or its treatment. Instead there’s more than an outside chance you end up impoverished, tormented and/or dead. Not much to smile about if any of those scenarios come to pass.

In spite of the harsh realities there’s a great deal to be thankful for when it comes to the breast cancer community. This vast and growing group of people all over the world understands the true significance of nodes, treatment regimes, clinical trials, funding, recurrence, metastasis, emotions and death. Everyones’ story is different and every one is inspirational, a source of encouragement and mutual support. The club none of us wanted to join is populated by people who are smart, loyal, determined, compassionate and empathic. Women (and men) who were going about their everyday lives like the rest of the human race until cancer sent them veering off course into a world of uncertainty, confusion and more medical procedures than most lab rats endure.

Being part of this community brings a sense of togetherness and understanding but it also calls for incredible levels of resilience. People we come to know as our friends often have stories that are far from rosy pink and perfect. Too many of our number have metastatic cancer for which there is no cure. While most humans deal with bereavement just a few times throughout their lives, members of the breast cancer community may find themselves bereaved on a regular basis. Joining this club means facing the fact that some of our friends will die before their time and there’s nothing any of us can do about it. It’s another of breast cancer’s ironies – friendships forged through one of life’s greatest adversaries have the potential to be life long yet the reality is they’re sometimes over in a matter of months.

Cancer is a horrible disease because it regularly steals away beautiful people, people who have so much to live for, who give so much, love so much and deserve to join the ranks of the old, grey and wrinkly just like so many other people do. Once upon a time I encountered death every 5 or 10 years. Now I encounter it every 5 or 6 months, so often that it’s become as familiar to me as the moon and stars. Familiarity doesn’t make it any easier to accept though; regular exposure doesn’t lead to systematic desensitisation.

Every time another friend dies of breast cancer another star disappears from my sky, the night gets a little darker and a little of that darkness lingers in my heart. In English when we talk about losing someone we say “I miss you.” Our French cousins have a different structure to their language and in French we’d say “Tu me manques.” This phrase seems to capture the overwhelming thoughts and feelings that come when the stars go out, when lovely people are taken from this life. Tu me manques translates as “You are missed by me” . . . To my friends and family who’ve died of breast cancer, you are and always will be missed by me.

Forget-me-not

Misguided, 10 Myths & Missing the Point

Those of us unlucky enough to be on the breast cancer merry-go-round know all too well that the Media has a strong role to play in raising awareness. It has an equally strong role in conquering a number of misguided, often serious misrepresentations of the truth.

Sadly much of the Press around breast cancer either sexualises or trivialises the disease by portraying it as an “easy” cancer from which we’ll all almost certainly be “cured” and go on to live long, healthy lives. (Myth 1).  A short detour into the land of all things pink and plastic is nothing more than a minor inconvenience for which we receive plenty of help and support (Myth 2).  Post-treatment we’re duty bound to be happy about our good fortune and can celebrate how incredibly lucky we’ve been since developing the “best” kind of cancer (Myth 3).  We’re cured (Myth 4) so can spend plenty of time flaunting freshly reconstructed, completely flawless (Myth 5) new “boobs” that are sure to be the envy of all our friends.

This quick, simple and largely painless path from diagnosis through surgery, neo-adjuvant or adjuvant treatment (Myth 6) and on into the realms of pretty-pink, happily ever after la-la land (Myth 7) is one I’m sure my friends with breast cancer all recognise and are, like me, so very pleased about. Breast cancer is a highly desirable form of cancer and of course we’d wish for it because it’s better by far than other types of cancer. We’re very “lucky” don’t you think? (Myth 8)

No. I’m sorry to disappoint but this is not a disease anyone should ever wish for.

Unfortunately the Media recently helped perpetrate another misguided appeal that misses the point about cancer by a country mile. An advertising campaign for pancreatic cancer helps further the myths that breast cancer, or prostate cancer for all the guys out there since breast cancer is an exclusively female disease (Myth 9), is a “good” kind of cancer.  It’s so good that it’s obvious we’d all chose breast, skin or prostate cancer given chance to select from the smorgasbord of available human cancers running rampage through our world. Those kinds of cancer are so much better for us should we feel the need to acquire some form of the disease (Myth 10).

Having lost a colleague and friend to pancreatic cancer several years ago I understand the stark reality of that particular form of this insidious disease. There’s nothing good about it and survival rates are low because it’s often discovered late, when locally advanced or already metastasized to other areas of the body. When diagnosed early the outlook for pancreatic cancer is often very poor and I fully agree that further research, better diagnostics and improved treatment regimes are all desperately required.

However I also have a long standing, close-up and personal relationship with breast cancer so will offer thoughts for those – including advertising companies and the Media – who might think it’s “easy,” “curable” or presents a “better choice.”  I urge you to consider the following then tell me that you’d wish to have breast cancer (or any other cancer that might be worth wishing for) if you’re given a choice:

  • You BRCA negative but you’ve lost at least five generations of women in your family to breast cancer, all before the age of 50. Each woman lived healthily pre-cancer, went through extensive and life-threatening treatment yet still developed metastasis within a few years of initial diagnosis… Will you choose to invite this disease into your life or the lives of those in your own family?
  • You never met your Grandmother, she died of breast cancer when your Mother was 5 years old. As a teenager you watch your Aunt (in her 30’s) go through surgery, radio and chemotherapy. A couple of years later she’s in palliative care, steadily succumbing to brain and bone metastases that eventually break her hip causing unimaginable pain for the last few weeks of her life… Does this sound like a better option than other forms of cancer?
  • At 23 you see your Mother endure surgery, radio and hormone therapy. She then faces surgery and chemo for secondary liver, ovarian and bowel cancer. You’re sitting at her hospital bedside, she’s encountered yet more side effects and as you talk a treatment induced blood clot drifts into her lungs. Panic ensues and you’re ushered away. Some time later, you’re unsure how long because your head’s spinning and your heart threatens to break through your ribcage, you hear the words “I’m sorry.”  In your final moments with your Mother she’s desperately gasping for breath and has time to realise something’s terribly wrong. Decades later that image, the noise and the violence of her death are indelibly etched on your psyche… Are you going to vote for breast cancer now?
  • You’re 41 have a teenage son and partner to support. You worked your socks off for over 20 years as you’re the only source of income. Despite regular screening you’re diagnosed with aggressive, invasive HER2+ breast cancer. Your life disintegrates in a matter of months, long-term friendships, your livelihood and your son’s mental health all dissolve. You undergo gruelling treatment for 18 months that causes persistent side effects and no guarantee of success. Your family knows this as well as you do…. Can you imagine finding any of this easy?
  • You begin rebuilding knowing you’re at high risk of recurrence in the next 3 years, need to make it past 5 years and even then the spectre of breast cancer can resurface with a vengeance 20+ years later. You avoid looking at your mutilated body, your confidence wanes and though your hair’s back your scars remind you that you’ll always be a cancer patient. The physical scars are ugly, the psychological scars are worse … Answer honestly, are you still going to wish for breast cancer?

I think you’re going to say no.

No sentient being wishes for hell on earth and that’s exactly what breast cancer is, creates and leaves behind.

Perceiving one form of cancer as more desirable, easier, curable or survivable is misguided. It completely misses the point because there is still no cure for cancer and that includes breast cancer.  It is not a disease to wish for under any circumstances and the sad fact is that men and women across the globe die of breast cancer every day.  As with most forms of cancer if it’s diagnosed late the prognosis is poor but even when diagnosed early (node negative), breast cancer can creep on via micro-vascular invasion taking hold in the brain, bones, liver, lungs or skin at any point.  Treatment is no less gruelling than for other forms of cancer and contrary to misguided Press stories success isn’t guaranteed. Statistics have improved thanks to increased awareness and earlier diagnosis but far too many lives are cut short, often young women in their 30’s and 40’s.  Irrespective of type, cancer is a complex illness and outcomes depend on a myriad of interdependent factors including age, genetics, chemical and environmental considerations most of which remain poorly understood. Geographical location and cultural norms also have huge implications for diagnosis and survival, something Doctors in many African and Asian countries know only too well.

It’s unlikely people like Claire, Cancer in My Thirties or The Sarcastic Boob would wish for breast cancer given any choice in the matter. My Aunt and Mother are no longer here but I’m 99.99+% certain it wouldn’t have made their wish lists either. Unsurprisingly I did not wish for it (it came anyway) and I would never wish it for anyone else. As a sentient being I know what a god-damned awful disease this is, what it does, its consequences and all the things it ruins, breaks or takes away.

Wishing for one form of cancer over another is sadly misguided, misinformed and missing the point. Happily ever after breast cancer remains a myth in too many cases so please think very carefully. A wish for breast cancer is not the same as a carefree, pain free, cancer free life. The treatments are very challenging and you may still end up with just a few months to live. The seven point truth is this:

  1. Cancer, including breast, skin and prostate, is a killer.
  2. There are significant outcome implications based on where in the world you live.
  3. Incidence rates are rising.
  4. We are all in need of a cure.
  5. Prevention must be our ultimate aim.
  6. Cancer research requires improved funding and continued support.
  7. Many more will die before cure or prevention become global norms.

Snowdrops in Fresh Pastures

Fragile

Life is fragile and to serve as a reminder someone knocked down my ten-month old kitten this morning.  I live on a quiet lane in the countryside and found Caspar in the hedge with a dislocated jaw and fractured skull.  The impact had completely dislodged his right eye so I’d say whoever hit him was travelling pretty fast. His injuries suggest he died very quickly which is the only consolation I can take from the incident.

When my neighbour’s husband developed dementia three years ago she reluctantly moved him into a care home because she was frightened he’d get knocked down. He’d lost his ability to react to passing vehicles, even slow ones, and would let himself out of the house to wander in the lanes at any time of day or night.  She said he’d always been an outdoors man and it seemed walking still held some kind of connection for him, it calmed his spirit and made him smile.  The decision to confine him in a care home twenty miles away caused my neighbour significant distress.  They’d been married for over 40 years and never before had a day apart but the fear of finding him dead or seriously injured in a hedgerow was more than she could bear.

Whenever I see my neighbour I ask how her husband is.  She tells me he is physically well but quickly fading away from her; she can barely communicate with him now. Her eyes are sad and they betray her thoughts.  Memories of happier times mixed with guilt because he’s no longer at home; the continual grief that accompanies a woman forced to watch helplessly while the man she’d called her soul-mate slips further and further from reach.  My neighbour was right to be concerned for her husband’s safety; a handful of people drive as if they’re in the Monza Grand Prix and they’d never stop in time to avoid a confused gentleman who is too unsteady to quickly step away from the single-track road. I feel desperately sad for her and for her husband even though he’ll never know it.

Caspar followed me everywhere and was especially keen on sitting in the greenhouse while I tended the plants.  You can see him in the photos below.  In the evenings Caspar and his brother Newton curled up together in the cat basket even though they were growing too big to share; one cat had to sleep on top the other.  Tonight Newton is wandering around unable to settle and staring at the back door as if his brother should be here already. The kittens were inseparable but a twist of fate means Newton has to adjust to being alone just like my neighbour is trying to adjust.  She’d give anything to have her husband back at home but can’t provide round the clock care or keep him safe from dangers he’s no longer able to recognise.

Life is so very fragile, far too fragile to take for granted.

Pixie dust: true friends keep making the magic happen.

frineds

There are plenty of phantom-friends, fair-weather friends and friends that are around as long as the going is good.

Good friends are around whatever the situation, whatever your status and no matter how dire things look or how sick you are.

Really good friends are like pixie dust, magical and full of surprises.

When I was first diagnosed with cancer a few people told me my illness would be the acid test, that it would enable me to distinguish fair-weather friends from true friends who’d continue to scatter their magical pixie dust for me no matter how bad things became. I never wanted to believe this was the case, I fought hard to resist the idea despite some persuasive arguments from people who’d walked the critical illness path before me and found themselves abandoned by some of their dearest friends.

I wanted to believe  everyone I held dear would prove to be a true friend irrespective of my absence and my illness but sadly I was proven wrong.

A very good and true friend helped me understand this phenomena.  She explained some people find the prospect of cancer, scary treatments and the closeness of our own mortality too difficult to deal with.   It’s not that they don’t care it’s just that they don’t know how to handle me or the thought of death so discontinuing the friendship is the only option they can see.  To paraphrase, it wasn’t me, it was them. I accept that explanation and yet I still feel sorry for the friends I’ve loved and lost over the course of the past year.

Most of us get old and when we get old we tend to get sick. I’d have liked to be old with you. Instead I’m young and sick and dealing with it because that’s the only choice I have.  Maybe one day when you’re old and face being sick you’ll understand. With luck I’ll still be around then and having done the critical illness thing thirty-odd years before you I won’t be intimidated by my own mortality (or yours). I’ll still be able-bodied enough to offer support and compassion. When all is said and done they’re the only things that matter and they can’t be bought or sold.  Good friends know this and continue to bring their pixie dust even when life looks difficult and scary. I’m fortunate to have some really good friends and I sincerely hope nothing bad ever happens to them but if it should, I’ll be by their side in a flash.

I will never be able to thank my really good friends for the love and kindness they show me. There are no words or gestures that can convey what your friendship means to me. The guy who called me today and apologised for not calling more often (you’ve kept in touch and that’s what matters), the girl friend who came to hospital with me, helped me have the most fun I’ve had in ages and made me totally forget I’m a cancer patient for a few days. That was awesome!  The couple who cried when they saw me last weekend because we’ve only been able to talk by phone since May 2012, the other girl friend who visited a couple of weeks back and took me out for lunch. The two guys I’ve known for ages who check on me regularly and are always ready to offer a hug, real or virtual along with words of wisdom. The members of my previous team who’ve kept in touch, come to visit and regularly ask how things are going.  My cousin who despite being in a different time zone always manages to maintain contact. My elderly aunt who doesn’t enjoy perfect health herself and my Dad who works the most ridiculous hours but still finds time to call me every day.  We’re all still here, we’ve all been through a lot, I’m guessing my illness may well have been scary for you too yet we’re still friends and most of us are still smiling like lunatics. (It’s the way forward I’m sure 😉 )

Thank you all for being the pixie dust that keeps the magic of life alive even in the darkest moments.  I hope with all my heart that you never go through this kind of experience but I also hope I’ll someday have the chance to bring some pixie dust into your lives too.