Trapped in a Well with a Crocodile (or cancer)

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

 

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

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

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

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

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

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

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

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

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

Cicatrix

  1. a scar left by the formation of new connective tissue over a healing sore or wound.
  2. a scar on a plant indicating the former point of attachment of a part.

We all gather scars, some more visible than others.  They mark the various knocks and scrapes we encounter as we make our way from childhood to old age. The grazed knee in the playground, the cut finger in the kitchen, the gashed hand in the garage – each serves as a reminder of our calamities and mishaps.

Yesterday the dressings protecting my newest wound were removed. It isn’t pretty.  Long and red it sports uneven edges, rough scabs and is filled with medical grade superglue.  Around it lies a fair amount of swelling and bruising, some blue-black, some yellow.  Tell-tale holes at the side of my rib cage (a modern vampire bite if ever there was one) signpost the point where the drains used to be. The complexity and scale of this surgery is easy to underestimate.

Once settled and healed I’m confident the reconstruction will be a good match for it’s opposite number. That scar has now faded to a straight, flat, thin white line. Little more than six or eight centimetres from end-to-end it is reasonably unobtrusive given it’s calamitous reason for being. Like the forty year old scar from a fall in the playground or the one in my heel (from treading on broken glass at nineteen), each cicatrix has its own story to tell, a series of events that led to its appearance and some lessons learned along the way.  An up close and  personal experience of cancer isn’t something any of us wants to learn from so prevention is definitely better than treatment as Angelina Jolie will no doubt attest. Surgery is a radical option but for some of us it’s the best thing science can offer right now.

I’m not a huge fan of Picasso’s art but one of his sayings is useful when reflecting on this experience: “Others have seen what is and asked why. I have seen what could be and asked why not.”  Being covered in permanent cicatrices, deconstructed and reassembled – none of it is pretty – but cancer and the chaos it creates is much uglier.

Nature or technology… or both

I’m staying in the Cornish fishing village of Portreath and as a nature lover its idyllic. The harbour and rocky outcrops surrounding the bay  provide a rich habitat for an array of marine and maritime flora and fauna.

The sea fascinates me. Ever changing, beautiful and deadly at time same time. Here the sea is very clear, a translucent turquoise-teal. When the tide goes out the harbour retains no water so remnants of what lies beneath are easily seen – crab claws, cockle shells and many types of seaweed all get left behind in the sandy inlet.  When the tide comes in it brings with it a multitude of life forms including swarms of moon jellyfish.  Today’s photos are all moon jellies. Like the sea, these primitive creatures fascinate me. They have no brain by our standards, no digestive tract, no circulatory system, no respiratory system and no real means of propulsion. They drift with the currents capturing fish eggs, shrimp and molluscs either via the mucus that covers the bell or by stinging with their short tentacles. Moon jellies are voracious predators that in turn play their own part in the food chain by becoming prey for leatherback turtles, sea birds and fish. They’re also eaten by us humans in some Asian countries although they should probably be classed as a drink rather than food since they are 95% water.

The last time I was in Portreath I was probably around six years old. I don’t remember seeing jellyfish but I do remember sand eels.  This time I’ve yet to find sand eels, probably because I’m less inclined to jump into the water. With age comes wisdom and although the air temperature is a toasty 26 degrees the water in the harbour will be much, much colder.  I did walk up and down the beach and dabbled my feet in the sea but as expected it was cold, too cold for me to entertain swimming. Along the tide-line against the harbour wall there are numerous sea anemones, mussels, limpets and periwinkles.  I hope to photograph those if I can scramble across to the rock pools later in the week. Anemones are so much prettier when they’re under water, once the tide goes out they look like blobs of reddish-brown gravy stuck to the rocks.

There is no mobile phone signal here which made me wonder whether I’d like a life completely free of technology and always-on connectivity.  It’s a strange thought for someone who has spent the last 15 years building, deploying and subsequently decommissioning technology of various types.  I’m very at ease with nature, the world of plants and creatures and I can happily occupy myself trying to identify or understand the non-human things surrounding me.  Coastal habitats are very different to the rural wilderness at home.

Thoughts of living technology-free soon gave way to more practical reasoning. I miss talking to my Dad every day and even SMS is impossible here;  there’s wireless broadband in the rental cottage so email and Skype are both possible but it’s not as good as a spontaneous hello from wherever I happen to be at the time.  I also wouldn’t want to be without my camera. I can always find things to photograph and the jellyfish were a surprise as well as a challenge for a novice like me.  It pays to have patience – for every decent image there are at least a couple resembling blurry modern art because the subject – in this case moon jellies – merged with the background. Photography is lazy art for me. Painting or drawing the jellyfish would require much more effort and there’s still a chance the result would end up a little abstract!

In my brief nature vs. technology moment I realised I’d also miss the Internet. For all its problems, the ability to search through whole libraries of information in matter of moments to find out about the life-cycle of the moon jelly, how much they sting and where they come from is something I wouldn’t choose to live without. Music, photography, mobile telephony and access to knowledge are all useful applications of technology in my day-to-day life along with automatic washing machines, electric lighting and heating. Television I could happily live without.

Being surrounded by nature is still my favourite way to pass time. Having the technology to photograph it, learn more about it and record the memories adds to the pleasure. At some point my brain might forget being here aged c. 6 years and I’m not sure we have any photographs from that occasion. Fortunately this time technology is here to lend a helping hand… Just in case my memory fails to serve me well in future.

Something beautiful

When I woke up this morning I found a visitor in the garden. I love these little creatures and find them very endearing.  I thought hedgehogs were nocturnal but it turns out they do forage during the day and this one was busily munching his way through seeds dropped by the birds.  We don’t have many wild mammals in the UK and the ones that remain tend to be small. They’re still beautiful.

Something beautiful has happened since I began blogging.

I wasn’t expecting it and I’ve been surprised, amazed and very touched.  The support, thoughts, encouragement and kindness of the blogging community has reached me from all over the world.  Connections have been forged that it would be impossible to create in any other way and I’ve received the most amazing gifts. People have written poetry, added heart-warming comments and given award nominations. It’s more than I ever expected from a blog designed to keep a small group of family and friends up to date with my continually evolving life during and after breast cancer treatment.

I want to say thank you, everyone, for all that you do.  The support I receive here is amazing and it sees me through the darkest of days… it’s true I’m usually optimistic but like everyone else I have the odd moments of doubt.  I now wake up every morning and like discovering the hedgehog in the garden, I find there’s something beautiful awaiting me.  A comment, a like, a new follow.  So special and so kind.

I have very little to offer you in return except my ramblings and some photos but I want you to know I appreciate your support and am glad we’ve been able to meet each other in this virtual world. Long may we be friends because friendship is something very beautiful 🙂

Machiavellian imaginings

For months now I haven’t been able to remember any of my dreams.  Nothing unusual there you might think but for me dreams are fairly regular night-time companions and habitually I remember them in full.  Often they include people I’ve never met, places I’ve never visited and colour palettes unlike the colours of my waking hours.  The colour schemes are the giveaway, they signpost the truth, that the dream isn’t real.

This morning I woke up at 5am but was too tired to stay awake so I pulled up the duvet  and returned to slumber.  During that extra few hours’ sleep I had a dream.  There were no strangers or strange places, just me looking at myself in a mirror.  The colours were all as they should be, everything seemed normal and ordinary.  I was sat in front of the mirror in the spare room, the sun was shining outside and the leaves were fluttering on the trees.  I was looking at myself, grooming my hair with a tortoiseshell brush and untangling long lustrous tresses of amber, goldenrod, cinnamon and tigers eye.  I was talking to myself, almost having a solitary quarrel with my reflection and I could hear my voice saying “no, no, no, this isn’t right, this is a dream.”  It seemed so real, everything looked so familiar and I spoke to myself several times with increasing frustration before finally opening my eyes, shaking my head and dragging myself back to the here and now.

I knew it wasn’t real before I’d even woken and in spite of my mind’s conspiracy to convince me otherwise.  I had long hair, the hair I had three years ago that cascaded over my shoulders and half way down my back.  That hair disappeared in September.   Damn you Machiavellian imaginings but don’t assume you’ll bring me feelings of despair.

By this time next year it won’t be just a dream.

Where we find our beauty

Growing up I was often affectionately referred to as a bean pole or a length of cotton with knots in. As these descriptions imply, I was a tall, gangly child; angular with spindly limbs and lots of straight edges. I eventually filled out but the filling brought more angles in the form of asymmetric hips (and shoulders)!  I have a long face with a straight but not overly long nose, large eyes framed by fair lashes and brows. My lips also happen to be asymmetric, thin at the top, fuller at the bottom and my skin is exceptionally pale with a random sprinkling of small freckles.

As a teen I considered myself rather unusual looking, a strange sub-species of the classical beauty found in women like Audrey Hepburn, Diana Rigg or Grace Kelly.  I always thought my friends were far prettier, more evenly proportioned and further in keeping with ideals of conventional beauty.  I was rarely unhappy about my alien appearance in spite of the superfluous angles, spikey joints and long lines but from time to time my height was a source of strife.  I was a good head taller than my best friends and a fair bit taller than many of the boys throughout our school years.  Tall meant there was no easy way to blend into the background and when you’re a kid invisibility is sometimes helpful. For me it would have been especially useful in history class.

As I grew older I stopped thinking about physical dimensions and features and thought instead about what really makes us beautiful.  I have many theories but I’m not sure there’s one definitive answer.  I do know that I’d rather devote my time learning to become beautiful inside than spend big bucks shoring up the outside.  External renovation is such a thankless task; the outside will inevitably suffer wear and tear over the years so my wrinkles don’t bother me.  They signpost that I smile more than I frown and I believe that’s a good thing.  

For a short time this year I did encounter a more stubborn little wrinkle as I’m sure many women do.  Even with the best reconstruction in the world mastectomy throws up the same kind of body image angst that almost all teenagers go through.  It took me a while to take a look at what had gone on there.  I’m not sure there’s a simple way to overcome the confusion and uncertainty of such a sudden change but as soon as I turned my attention from the scar to enjoying my life the angst melted away. Now I treat the scar in just the same was as the wrinkles round my eyes. I don’t care about it anymore. It’s on the outside and it marks a skirmish that happened a while back but the feisty redhead won that round.

For all that goes on outside, I’m inclined to think the best kind of beauty stems from within.  As Rosalind Russell so nicely puts it, “taking joy in living is a woman’s best cosmetic.”

It’s chemo. I’m not marked by the Devil.

By 2012 you’d think people might be used to seeing other people with cancer. Bald heads, no eyelashes or eyebrows, sometimes gaunt, sometimes using sticks or frames to walk. There might be more awareness that folks having chemotherapy can be any age because cancer isn’t fussy about who it grows in and it’s growing in more and more of us.  I thought people would be more used to seeing it,  they’d be more aware.  I can understand kids staring, they aren’t to know about the horrors of cancer or the physical changes chemotherapy brings. But adults?

I’m lucky because I stand tall and walk around unaided. Most of the time I’m “normal.” The only visible signs I’m dealing with cancer are my hairlessness and very pale skin.  I cared about the hair at first, when my scalp was sore and tingling. I cared when I could run my hands through and find them carpeted in golden strands that I hadn’t even felt detach from my head.  Seeing my hair all over my hands made me realise I was sick, very sick.       I don’t care about it now, it’s just hair, I’m doing fine and I’ve adapted.  I’ve always been good with different and this is just a different, more streamlined version of me.

My head gets cold and most of the time I wear hats. I like beanies and slouchy berets. When the temperatures drop a little lower I’ll pull out the fake fur and have fun rocking a cossack look, long boots, big coat and furry hat. Winter is a good time to do chemo from a head-gear point of view.   I guess I am a bit thinner than I was before but I don’t look malnourished and I’m pale in a fashionable Twilight kind of way without the sparkles. I would’ve liked sparkles.

I put on make-up when I go out and I’ve developed techniques (thanks to a very special friend) to disguise my lack of brows and lashes.  I confess I’ve never been brilliant with cosmetics hence my need to ‘phone a friend but occasionally I manage to impress myself. If my patience holds up and I get it right I can make myself look feminine in a cancer-chic kind of way.  I smile and laugh, I’ve got good posture and I walk fast. I’ve always walked fast because I’m tall with a long stride. So even if my speed has diminished a little I often find myself overtaking other folks on the sidewalk.

That’s when they stare and I wonder what it is they’re seeing.

This staring isn’t reserved for the sidewalk. People stare at me when I go to the shop or for a stroll.  They stare when I go to the hospital too. Inside the hospital where sick people go to die or get well again. Surely I’m allowed to be bald in hospital, the place that made me bald in the first place (!) so that I can get well again?  The hospital staff have seen it all before, they don’t notice my hair has gone and even if they do they aren’t bothered by it.

When I have to engage with a stranger at a check-out or in a filling-station the staring from a distance turns into a look of panic, pity or repulsion.  Sometimes its as if they’re thinking she’s coming this way,  sh*t, she’s going to talk to me.  Well of course I am because I don’t want to get arrested for shop-lifting. D’oh!  So I smile, say hi and act normal.  I am normal. I want to pay and be on my way like any other ordinary customer.   A few times cashiers realise I’m not marked by the devil, it’s just cancer and chemo fecking me up a bit.  A few times they ask how I am and I tell them I’m having treatment and overall I’m doing well. They seem to understand and I wonder if their lives have been touched by cancer too?

But a lot of the time people just stare, they don’t ask how I am or say Jeez, I feel for you, good luck with everything.  I wonder if I’ve been marked by the devil  😦                       Christ-on-a-Cracker if I take my beanie off 666 is going to be branded on my head!  Don’t worry, I’ve taken a good look from all angles and it’s not on my head. I’ll look elsewhere.

I accept it’s a little strange to see someone relatively fit and youngish looking with no hair but I’m not the Anti-Christ.  It would be nice if people could get over how I look and see that underneath my hat I’m just another human being getting on with my simple human life.  I won’t bite, I’m not contagious so if you ask how I’m doing I’ll say I’m doing well and thanks for asking 🙂 I wouldn’t be buying petrol if I was about to drop dead and it’s illegal to build your own funeral pyre in this country. Using petrol would definitely be a no-no.  So trust me, if I take off my hat (I won’t) I do not look like this. I will not drag you to hell.

For some extra insight into being different, my sister in arms HighinBrixham has a very funny post here: http://highinbrixham.wordpress.com/2012/10/09/im-normal-youre-too-furry.

And a poignant and touching insight can be found here mywifesfightwithbreastcancer.com/reactions   at Angelo Meredino’s website.  Angelo photographed his wife’s cancer journey, this link shows people’s reactions to her.  Jen lost her battle and Angelo is a 38-year-old widower. I feel for him.