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

Weekly Photo Challenge: Joy

london may13 2013-05-25 011

Glancing at this photo you might wonder how it can possibly conjure a sense of joy. There are flames, black smoke and some heavy-duty ironmongery.  There’s also something that looks rather ominous in the middle together with a shot of someone with a cymbal in front of his face. Look more closely at the bottom right corner and you’ll see those things sticking up are people’s arms. The arms are in the air because everyone is waving, singing, dancing and having a whale of a time watching Muse at the Emirates stadium in London. The guy with the cymbal is Muse drummer Dominic Howard.

Normally I might choose a nature photo or a holiday scene to symbolise joy but there are a number of very special things about the picture I’ve included here. The Muse show was one of only two at the Emirates and the tickets were part of my son’s surprise birthday present which included spending four days in London.  It was an action-packed four days which included a river cruise to Greenwich, seeing a musical in the West End, watching the England football team play the Republic of Ireland at Wembley, wandering around Chinatown, watching the entertainers in Covent Garden and a trip to Abbey Road. Muse were the icing on the cake and we spent a balmy May evening singing, dancing and generally having fun which was a vast improvement on the previous summer. It was good to know I wasn’t too old or too post-chemo bald (!) to be a concert companion. Although our blood relationship is mother-son, its brilliant that we are such good friends and have been for the last 20 years – love and friendship are the true meaning of joy 🙂

Inhumanity: when a “cause” spawns horrific consequences

Two wrongs do not make a right.

Two wrongs do not make a right.

When I woke up this morning I was preoccupied by thoughts of my 9am hospital visit. My preoccupation lasted approximately three minutes because I quickly discovered that a young soldier was brutally hacked to death on the streets of London yesterday. He was ambushed in broad daylight not far from the largest military barracks in the capital and pictures of the perpetrators soaked in their victim’s blood are now all over the press. Various reports suggest the two attackers viciously stabbed the young man and decapitated him all the while encouraging members of the public to take photographs or film of this sickening event.

Whilst officials were desperately trying to play down the motives for this act of barbarism eye-witness statements and footage of the culprits ‘explaining’ themselves are crystal clear.  One witness said “They grabbed the guy towards the wall then stabbed him – stabbed him, stabbed him, cut his neck, and then dragged him into the middle of the road.  They dragged the poor guy – he was obviously dead, there was no way a human could take what they did to him.”

The poor guy was Drummer Lee Rigby,  a 25 year-old from the Royal Fusiliers. Tonight his two-year-old son no longer has a father.

No doubt when Drummer Rigby joined-up he realised becoming a soldier meant operating in war-zones and placing himself in situations fraught with danger.  No doubt his loved ones also realised the significant level of personal risk that went along with his career choice.  I suspect neither Drummer Rigby nor his family and friends expected he would be ambushed and hacked to death in London all in the name of a “cause.” 

Irrespective of your position on Afghanistan, Iraq, Syria, the Falklands, Uganda, the Niger Delta or any other troubled place on our very troubled planet, two wrongs never make a right.  Irrespective of your beliefs or religion, Christian, Muslim, Judaism, Buddhist, Sikhism, Hinduism, Agnostic, Atheist, Pagan or Wiccan, two wrongs never make a right.  Irrespective of your ethnicity, culture, class, origin or status, two wrongs never make a right.  We of all faiths, colours, religions, countries and castes would do well to make this our mantra.  We should ensure our children – let’s not forget the men who committed this crime are someone’s children – respect the sanctity of life, all life, even if it happens to be different to our own.

When a “cause” becomes so all-consuming that it permits one man to murder another, to boast about that wrongdoing and encourage others to do likewise we have slipped from humanity into inhumanity. As a mother and a peaceable citizen living in a country that is supposed to be “safe” I can only echo the words of the person who left these flowers for Drummer Rigby. I hope your suffering was brief and that you are at peace now.  I am disgusted that my child is growing up in a world so full of corruption and unnecessary violence. I am ashamed to call myself human when this kind of depravity exists in our world.

 

It may linger…

Horror is a feeling that cannot last long; human nature is incapable of supporting it. Sadness, whether it be from bereavement, or disappointment, or misfortune of any kind may linger on through life.” James De Mille.

self portrait of sadness

self portrait of sadness (Photo credit: Wikipedia)

Today one of my cats, the ginger one, caught and ate something before I could rescue it.  I think it was probably a young rat.  I’m not a huge fan of rats (because there are so many of them and they are very destructive) but I prefer it if the cats don’t eat them. Cats are skilled hunters and although they’ve been domesticated over many eons their underlying instincts remain unchanged. They are hard-wired to catch and eat small creatures and my contrary wishes don’t always get taken into account.   No-one here in the countryside is unhappy that the cats hunt down a few vermin; they’re glad the rodent hordes aren’t over-running their outhouses, stables or wheat fields.   Sometimes people accuse cats of being cruel but this is a human label and is best applied to human behaviour. Cats simply rely on their instincts to ensure their survival.

Humans do not need to be cruel to one another but wherever you look you can find evidence that such behaviour runs rife through our societies. Whether it’s the school bully, the autocratic boss, the abusive partner, the over-critical parent or the warmongering militia, human cruelty can be found in so many places.  It operates at all levels, physical, emotional and psychological and whilst the horror of those situations may not last for long, the pain and sadness have the power to linger throughout life.  However it happens, when one human hurts another sadness remains long after the horror of the situation has subsided.

I remember my Mum telling me that for as long as she could remember her step-mother branded her stupid and clumsy. (She had a step-mother from the age of five or six).  Growing-up unsupported and demeaned meant my Mother had little self-confidence. She truly believed she was both of these things and thought she had little to offer the rest of society.  It was only when she met my Father and became part of his family that she realised some parents are different; some are kind, loving, compassionate and encouraging.  My Mum blossomed as a person in the company of my Father and his family, she had the most wonderful life with my Dad (who also happens to be a kind, compassionate, intelligent man who puts other people first).  In spite of this change in circumstances I know for a long time my Mum still struggled with thoughts of being unintelligent and awkward.  The saddest thing about it is that she was bright, intuitive, graceful and amiable.  For a long time she thought she was of little value but all those who knew her valued her greatly.  Her step-mother was undoubtedly a cruel woman who caused so much distress. I chose not to maintain contact with her as soon as I was old enough to make my own decisions.

Someone very dear to me is in the midst of the sadness that comes from acts of human cruelty.  Not physical mistreatment but acts of abuse none the less.  It has suffocated their joie de vivre, stolen their dreams and crushed their confidence.  I would like more than anything to remove the pain, eliminate the sadness and create a space where chi might flourish again. I fear I am not that skilled. I can splint broken bones and alleviate the symptoms of a multitude of minor ailments but I know no easy way to mend broken hearts or relieve lingering sadness from a tired soul.  My inability to recover and restore what has been lost disappoints me greatly.  Sometimes I need to work miracles and it saddens me that I cannot.

Weekly Photo Challenge: Escape

Escape

This week’s photo challenge is ‘Escape.’ Its very apt right now so here’s a recent photo that conjures up escape for me.  I love the sea, its wild, ever-changing nature. It is irrepressible, able to escape it’s confines and break over land or into the air as this shot taken in Barmouth, Wales, manages to capture.

Rehab

One of the (many) surprising things about being a cancer patient is the lack emotional or psychological support that’s available to deal with the non-physical impacts of the disease and its treatment.  It may be this is just the case in my locality because my Healthcare Trust is over-budget and the Government refuses to offer an extended loan. I’d be interested to hear whether other people have a similar experience?   In this area it seems unless you’re on the verge of complete breakdown or pose a threat  you’re expected to take care of yourself.  I imagine this must be very difficult for people who are on their own or prevented from maintaining social contact due to treatment or it’s side-effects.

To aid with my self-managed physical and psychological rehabilitation process I’ve thrown myself into growing things.  I enjoy being outdoors creating aesthetically pleasing flower beds and patio containers, mainly because I’ve always loved nature. The greater variety of plants and flowers in the garden, the more wildlife comes to visit. Back in the early 1990’s I used to grow vegetables as well as flowers and I’ve decided to re-establish this practice in earnest now I have the opportunity to do it.

I’m tired of my post-chemo, herceptin-inflated body and I suspect its tired of me as well.  I want to disperse the gallons of extra fluid I’m retaining.  I also want to regain my physical strength and overall fitness levels both of which have been seriously depleted during the course of the last 9 months.  My target is to lose 3.5 stone taking me back to the weight I was as a teenager at which point I should be lean enough to enter the Bristol 10k next year.  According to popular weight loss calculators a steady 2lb per week will see me hit my target weight in 25 weeks time – 1st November.  The manual labour involved in gardening will help rebuild strength and tone, time on the cross-trainer and bike will help with stamina and cardio-vascular performance.  With luck this will take care of the physical side of things.

Psychologically being outside in the natural world is the most healing activity I can think of so a combination of gardening, walking, tai-chi and yoga will hopefully restore my somewhat frazzled nerves; the past year has been incredibly stressful. The present continues to be traumatic and since I don’t want to turn into an axe murderer to help secure support from my local Healthcare Trust I intend to create some mental down-time without the use of drugs or alcohol.

I planned on spending an hour in the garden today but didn’t bother checking my watch.  I spent six hours out there without a break.  In reality it was probably three hours work but the 2013 version of me operates at a much slower pace than the 2011 version. In particular I have to avoid standing up too fast from kneeling or bending as I also get faint far too easily these days and passing out when there’s no-one else around isn’t a good idea.

I was pleased with the results of my efforts.  Although it doesn’t look like much at the moment the flowers in the border will fill out over time to bring some colour and perfume throughout the summer.  There are snapdragons, hollyhocks, foxgloves, grannies bonnets, rock roses, aubretia, various kinds of daisy, violas, primulas, campanula and cornflowers.  On the organic homegrown vegetable front there are tomatoes (cherry, plum and beefsteak), onions, garlic, parsnips, carrots, broccoli, cauliflower, peas, beans, peppers, rhubarb, lambs lettuce, rocket, thyme, rosemary and oregano.  I’ve also planted strawberries, blueberries and loganberries.

Although it’s officially Spring, we’re forecast to have some very bad weather tomorrow with heavy rain, temperatures down to 5 degrees C and a risk of snow! Fortunately the flowering plants have already been acclimatised and the vegetables are in the greenhouse so they stand a chance of growing into something tasty in a few months time.

Stuck in a moment

This song by U2 has been playing in my head for days now.

Songs often come to me when there’s a lot on my mind.    It’s funny that our brains can drag things out from the depths of our memories at times when the messages within them might have special meaning. It’s especially funny how my little brain still manages to process melodies and the accompanying lyrics from a multitude of songs when many of my cognitive functions have been hammered into non-existence over the past 9 months all courtesy of you know what.

The sun is attempting to make an appearance today and in spite of my malfunctioning joints I’m going out into the garden to plant some flowers.  I love flowers especially old-fashioned varieties like forget-me-nots, red-hot pokers, bluebells, grannies bonnets and foxgloves.

In a few weeks the flowers will hopefully attract butterflies and bees so there’ll be plenty of colour, life and beauty in my garden following a long, cold and particularly gloomy winter.

I’ll be singing along with U2 while I’m out there messing about in the mud for a few hours.  If you’d like to sing along with me here are the lyrics…

 

I’m not afraid of anything in this world
There’s nothing you can throw at me that I haven’t already heard
I’m just trying to find a decent melody
A song that I can sing in my own company

I never thought you were a fool
But darling, look at you
You gotta stand up straight, carry your own weight
These tears are going nowhere, baby

You’ve got to get yourself together
You’ve got stuck in a moment and now you can’t get out of it
Don’t say that later will be better now you’re stuck in a moment
And you can’t get out of it

I will not forsake, the colours that you bring
But the nights you filled with fireworks
They left you with nothing
I am still enchanted by the light you brought to me
I still listen through your ears, and through your eyes I can see

And you are such a fool
To worry like you do
I know it’s tough, and you can never get enough
Of what you don’t really need now… my oh my

You’ve got to get yourself together
You’ve got stuck in a moment and now you can’t get out of it
Oh love look at you now
You’ve got yourself stuck in a moment and now you can’t get out of it

I was unconscious, half asleep
The water is warm till you discover how deep…
I wasn’t jumping… for me it was a fall
It’s a long way down to nothing at all

You’ve got to get yourself together
You’ve got stuck in a moment and now you can’t get out of it
Don’t say that later will be better now
You’re stuck in a moment and you can’t get out of it

And if the night runs over
And if the day won’t last
And if our way should falter
Along the stony pass

And if the night runs over
And if the day won’t last
And if your way should falter
Along the stony pass
It’s just a moment
This time will pass

 

Welcome to Cancerland

A year ago today I suspected all was not as well as it should be with my health. My suspicions proved more accurate than I imagined. Life has been an endless stream of hospital appointments, blood draws, infusions, procedures, drugs, side effects and more drugs ever since. The experience has changed my life beyond imagination.

I’d been wondering about my health for a while. I was permanently tired no matter how much sleep I managed to get. The tiredness went well beyond the levels I was used to with ongoing pernicious anaemia and it was unexplainable. By the end of a normal working day I had no energy for anything else. During weekends, a time when I’d usually make use of every second, I wanted to sleep and stay sleeping for hours on end. I never sleep during the day yet all of a sudden sleep was the only thing I craved. My skin had become a constant problem too. I thought at first that the constitution of my washing powder, cosmetics or soap must have changed. Over a few months my skin was increasingly dry and prone to eczema no matter how well I cared for it or what products I used.  My hair became dry and fell out more than usual.    Viruses became my worst nightmare. I caught colds I couldn’t shake. Simple bugs that everyone else shrugged off in a few days became month-long sagas for me to the point where I dreaded being in the company of anyone remotely contagious because I’d find it so much harder to recover. I picked up swine flu and was very sick for weeks on end.

On reflection I think all these bizarre anomalies were symptomatic of the larger, more deadly changes taking place unseen inside my body. They were the outward signals that balance and harmony no longer existed within the system. They were probably signs that my already temperamental immune system wasn’t acting as well as usual. Unsurprising in hindsight since there was a serial killer in my midst and it was hunting me down at a very rapid pace.

I recall my thoughts were polarised. Part of me said stop being ridiculous, it’s all coincidental and you’re over-thinking it. That part of me didn’t want to believe I was at least the fifth generation of women in my family to develop aggressive breast cancer between the ages of 39 and 43. I say at least because our records are sketchy, none of these women survived beyond 50 in spite of various forms of treatment. Another part of me suspected history might be repeating itself. Something malevolent, highly defective and age or hormone related was waking from its slumber to stealthily consume my body. I wasn’t over-thinking it and the serial killer wasn’t just stalking me, it was actively attempting to murder me from within.

So much has happened since this time last year. Life turned upside down, inside out, was spliced and diced beyond recognition. Major surgery followed by the chemical equivalent of nuclear warfare means that every fast growing cell was terminated or stalled on a three weekly basis for 5 months. Every chemo session is clearly visible in unexpected places like my fingernails. There are no useable veins in my left arm and my right side isn’t much better so I’ve come to dread basic medical procedures like cannulation because its painful, stressful and far from straightforward. More than three attempts and there’s a good chance I’ll go into shutdown; my blood pressure drops so low it scares the nursing staff half witless.

I no longer know the body I live in, it doesn’t look or feel like me. Its more akin to some dodgy rented accommodation and no matter how well I treat it I’ll never be able to trust it. For ever more I have to maintain a watchful vigilance for any changes, even tiny ones, because they could signal the serial killers resurgence. Thats an especially high risk within the next two years but the residual risk continues forever. No days off for holidays or Christmas once you step into Cancerland. Simple tasks – lifting something heavy, reaching up to the top shelf, walking more than a mile, opening jars – are difficult now. These are everyday things that I never gave a thought to a year ago. Today I have to consider how to do them, or just not do them at all. It’s incredibly frustrating and no-one can tell me if or when these things will improve or how much they’ll improve by. That’s frustrating too.

In some ways it’s fortunate that I’ve always been a spontaneous rather than create huge life plans in advance kind of person. Even the few vague plans I held on to – things I wanted to do, changes I wanted to make, places I hoped to see – have gone awry or away.  They’ve vanished to be replaced with plans for two further major surgeries, possible tamoxifen for up to 10 years and the restart of herceptin if its side-effects can be brought into check sometime soon. Getting back to anything scarcely resembling life before diagnosis feels a long way off, some of it has disappeared and will never return. A new abnormal has taken its place and whilst I’m not crazy about it, it’s all I’ve got.

When you find out you have breast cancer and the consultant says “ok, as we suspected its cancer but its treatable” you have no idea that every ounce of normality will be squeezed out of your life. You might be aware of certain treatments and their associated side effects but nothing adequately prepares you for them. Everyone reacts differently, we all get our own personal version of hell on Earth just like no two cancers are exactly the same. All you can do is go with it and wait for the effects to pass. You get to thinking OMG this sucks but you have no idea how long it’s going to suck for, no-one can make any promises. For some it’s well over a year, pushing at least two. For others it’s the rest of their lives because the cancer has already reached a stage where holding it up is the only option, eventually no amount of drugs, therapies or faith will prevent it taking over. Death will ensue.

While you’re busily dealing with the serial killer in your midst the lives of those around you change beyond recognition too. There can be fear, disbelief, denial, anger, sadness, you name it there’s probably a (negative) emotion family and friends have been through. When relationships go off the rails – and is it any surprise when extreme circumstances push people beyond their limits? – it seems to be another signal for the serial killer to sharpen its knives. “By analyzing data collected between 1973 and 2004 for 3.79 million cancer patients, researchers found that, 10 years after diagnosis, survival rates for people who were separated at the time of diagnosis was just 64% of that for married patients. A decade after a cancer diagnosis, the survival rate among married patients was 57.5%, while, among separated patients, it was just 36.8%. The dramatic difference led researchers to believe that the severe emotional toll of separation might effectively cripple patients’ immune systems.” (http://healthland.time.com/2009/08/24/love-life-can-influence-cancer-survival-rates/#ixzz2SgguwVHhhttp://healthland.time.com/2009/08/24/love-life-can-influence-cancer-survival-rates/).

Irrespective of partnership status, the importance of a strong social network is now coming to light yet months or years of medical interventions, a complete lifestyle shake-up, loss of confidence and enforced isolation during some treatment regimes can all make the basic fabric of  life very difficult to sustain. Social networks are, it would seem, another predictor of outcome. (http://www.huffingtonpost.com/2012/11/13/breast-cancer-study-strong-social-ties-improve-survival_n_2122697.html)

If someone had told me that sometime in my late thirties a genetic malfunction or signalling pathway error would result in the discovery of aggressive breast cancer aged 42 would I have lived my life differently thus far? The simple answer is yes.

  • Instead of accepting the popular belief that few cancers are genetic and my abominable family history was all coincidence I’d have insisted on the mastectomy I asked about and was persuaded against in 1997.
  • As selfish as it may sound I’d have spent more time taking care of myself instead of working myself to a cinder in a number of thankless jobs for far too many impossible customers.
  • I’d have stayed at home more rather than working relentlessly while my son was growing up simply because I felt compelled to provide for us and fell into the role of mother, sole wage earner and household doer of all things great and small for the past 21 years.
  • I’d have thought more carefully about who to take care of, where my support was genuinely valued and whether some reciprocal care might come in return should I need it. Sometimes even the strongest and most independent need a little help.

Hindsight. A wonderful thing but always too late. Do I regret my previous choices? No, not really. Theres no point crying over spilt milk as the saying goes even if, as per my case, the spillage is big as the Atlantic Ocean.

Has the way I think about my life and what I do with rest of it changed? Yes, most definitely.

While I’d like to say the changes are all for the better, I’m not sure that’s true. Being as giving as possible, worrying more about others than myself, supporting them before securing my own well being – these all feel like positive traits to me. Yet I’m having to rethink them, tone them down to create space to consider myself and my own needs more. Is this going to make me a bad or selfish person? I don’t know.

A year ago I’d have chastised myself for these changes; I’d have cared if other people thought I was bad or selfish. Today I don’t because I’m the one fighting for my life, it’s taking every resource at my disposal and that may not prove to be enough. Today my life is full of ghosts. Whispers of  places I used to go, people I used to see, things I used to enjoy but can no longer do. As with all ghost there’s a melancholy that goes along with them because they hint of a life more ordinary, less complicated and free from the shadow of a serial killer named cancer. Today my life is the place where physical endurance is only the tip of the iceberg. Fasten your seat-belts because relentless turbulence is the only thing that’s guaranteed. By the way,  Welcome to Cancerland.

cancer 2011

cancer 2011 (Photo credit: mike r baker)

In and out of multiple lives

Do you know what makes life confusing? It’s when you can’t determine if things are signs for you to give up or simply a test to see if you can hold on longer.”

Some strange things have happened in the last couple of days.  It started with the train. The train is late more often than not and sometimes cancelled all together. I’ve taken to holding my breath in anticipation each time I hear an automated statement that begins “we are sorry to announce that ….”   There was an announcement, two in fact, but they were for other trains. My train wasn’t late and it left me confused, possibly in a state of shock. The people whose trains were delayed weren’t surprised. Isn’t it strange how we come to expect  chaos, get confused if it doesn’t happen and sigh with boredom when it does.

Next there was the taxi. I used to work in Arcueil just south of Paris where I experienced a whole new realm of taxi drivers including those who point-blank refused to venture beyond the periphique. Although I developed a taste for French food, my taxi experiences were of dubious quality and left me with an aversion to this form to transport for several years.  My recent taxi encounter proved to be a revelation. Not because the driver shrugged, huffed or looked generally grumpy but because he asked about my headscarf.

In 8 months of baldness there have been plenty of stares, whispered remarks and looks of pity but no-one stopped to ask me why I had a hat or scarf permanently welded to my skull both outdoors and in. Perhaps I looked like I might be contagious, bite or share some information that went beyond the cursory ‘fine’ when asked ‘how are you?’  Who knows. So when, after talking about the economy, the weather (has to be done, I live in the UK) and politics, the taxi driver said “do you mind if I ask, is your headscarf for fashion or some other reason?” I was thrown into confusion again. Here is a man I’ve had a pleasant ten minute chat with asking in a very genuine and sincere way about my headscarf.  He turned off the meter and I told him the truth. My hair is still recovering from chemo and my head will get cold/sunburned/both without some protection. I saw compassion and understanding in his eyes before he said “I know what this is like, my wife just finished chemo too. They say she’s going to be OK… I really hope you’re going to be OK, are you OK?”   Thank you Steve the taxi driver. Although I was confused at first your quiet concern and genuine interest made me feel human again.

I had a few appointments to attend to then met with friends.  I haven’t seen some of them for almost a year.  Piecing together things that have happened in their lives within the short time we had available was  a little confusing. I’m out of practice having lived in isolation like Phineus the hermit for the vast majority of autumn and winter. So many stories to tell, thoughts to reflect on, questions to ask. There’s a good deal of uncertainty in the lives of some of my friends right now. Confusion stalks them like the black dog stalks me.  As a ‘find a way to help make things better’ kind of person it’s difficult to stand by, to feel their concerns and be unable to suggest possible solutions  that might assist.   Other friends have moved forward, thrown off the shackles and are happy to recount that stepping away from something draining and demoralising was definitely the right move.  Well done ladies, you set a good example for us all.

It was good to see everyone, to reminisce, to hear their hopes for the future, to smile with them and be part of a community again instead of feeling alone.   Of course I’m not alone, I’m part of a huge community of cancer patients all of whom are in a club they didn’t ask to join. It’s a club that is constantly changing since it gains and loses members regularly. Becoming attached to members of this special club can be confusing and dangerous if coming to terms with death isn’t your thing. Aside from undertakers and morticians I don’t know anyone who is good at it.

I’d like to be fully present in the community of my friends and family. The one where the black dog runs amok occasionally but isn’t eating up souls every day. That world is still accessible to me but a large chunk of me is confined to the world of medical investigations, procedures, drugs, side effects and survival rates.   It’s definitely a test to see if I can hold on longer, 5 years, 10 years, more… who knows? It’s very confusing.  It makes my concept of the future a little more contained, closer to today than my retirement age of 67 when I might receive £110.15 a week state pension if it hasn’t been scrapped by then. 23 years is a long time for politicians to continue screwing things up – assuming we ever get out of the current mess.

Friends, family and concerned strangers like Steve the taxi driver shape and enrich the experience we call life. Many of my new friends know, as I do, that life may not last as long as we’d like so there’s a lot more catching up to do, places to go, good times to be had. Time is precious. Most of us get stuck doing things we don’t enjoy at some point but still have chance to change. Change it because you may not get another chance.

For my dear friends old and new and my family who have no choice but to deal with this crappy situation here is my wish for you:

Comfort on difficult days, smiles when sadness intrudes, rainbows to follow the clouds, laughter to kiss your lips, sunsets to warm your heart, hugs when spirits sag, beauty for your eyes to see, friendships to brighten your being, faith so that you can believe, confidence for when you doubt, courage to know yourself, patience to accept the truth, Love to complete your life… and a life free of confusion.

hands in mental confusion

hands in mental confusion (Photo credit: luigioss)

Coping is what we become good at…

People have scars in all sorts of unexpected places. Like secret road maps of their personal histories. Diagrams of all their old wounds. Most of our wounds heal, leaving nothing behind but a scar. But some of them don’t. Some wounds we carry with us everywhere and though the cuts long gone, the pain still lingers.  Meredith Grey.

My first scar happened a long time ago. I was around five years old and somehow managed to jab a biro into my knee. I remember it hurt at the time and for years I had a blue dot beneath my skin. The dot has faded but the scar remains, a constant reminder that biros are best used on solid surfaces, not knees.

I have a feint scar on my right hand and a more distinct one on the left.  The feint one is a cat scratch from my Grandmothers enormous ginger (and semi-wild) tomcat. Both my Grandmother, Evelyn and the tomcat, Tigger died a number of years ago but thoughts of them still make me smile. I remember my Grandmother cussing the cat as he ambushed her from beneath a flowering shrub for the hundredth, or possibly the thousandth time while she tended to her laundry. Pristine white linen drying in a garden that was a triumph of horticulture and a sea of colour, filled with dahlias, Japanese wind-flowers, lupins and peonies. Tigger had plenty of places to lie in wait for an attack on any unsuspecting ankles.  No-one, not least my Gran, was spared his high jinks.

The  scar on my right hand is a burn. Too much rushing around in the kitchen and a failed attempt to remove something very hot from the oven with a tea towel instead of oven gloves. My oven gloves had broken and I couldn’t afford to replace them. Instead the money went towards my sons third birthday cake. I taught myself that rushing to bake cakes was a bad idea. I also taught my young  ‘soak up new words like a sponge’  son a word I didn’t intend to share with him. B*ll*cks.  I’ve never fathomed why children learn some words immediately while others take time and patience to be assimilated into everyday speech. That word was seized upon by my almost three-year old with instant glee. Fortunately it didn’t amuse him for long. We both laugh about this now… and we both have fully functional oven gloves in our kitchens.

I have a scar in the shape of Myanmar between the annular and little finger on my right hand.  I’d been out with friends but wasn’t drinking because I had to drive. I managed to slip on some gravel and some gravel managed to embed itself in my hand.  I was teased for being the only person who fell over when everyone else was drunk and I was the only one to remain sober.

The three newest, most visible scars include a 2cm line in my right armpit, two perfectly round scars that resemble a large vampire bite on my rib cage (they’re drain scars) and a 7cm diagonal scar across my right breast. These scars have no amusing memories to accompany them. They are the unholy trinity that marks my physical assault on cancer and  the handiwork of Miss M, the amazing oncoplastic surgeon who helped preserve my life.

All of these wounds have healed, repaired themselves leaving nothing more than some lines on the road map of my personal history. There are, of course, the other scars. The ones that can’t be seen. Scars of miscarried babies and my Mother, snatched from us far too early by cancer. Scars of past betrayals, misplaced loyalty,  forsaken friendships and lost love.  The cuts went away and for some of these scars the pain is a dull ache instead of the nerve-jangling wretchedness of a broken heart.  For others the pain doesn’t recede, it’s simply concealed behind a facade of optimism and the hope that in time, things will be better.

When facing a difficult situation, something painful or threatening we often try to console each other with clichés: What doesn’t kill you makes you stronger, every cloud has a silver lining, better to have loved and lost than never to have loved at all… There are hundreds of these things but they rarely help.   When my Mother died I was deeply traumatised, receiving a cancer diagnosis myself was quite a shock too.  Many clichés were offered up by well-meaning people around me but those words didn’t help.  The words I fell back on, the ones that have really made a difference came from my Aunt a long time ago. “People will say it gets easier with time, that you get over it, life goes on. Life does go on, it doesn’t get easier. You just learn to cope better. Coping is what we become good at.”

Scar

Scar (Photo credit: Tattooed JJ)