K is for ‘Kintsugi’

Japanese 金継ぎ English translation “golden joinery”

As the two year anniversary of my mastectomy and DIEP reconstruction rolls on by, I find myself in reflective mood.  It’s not hard to remember how I felt back then, in the immediate post-operative aftermath.  Walking hunched over like a little old lady with severe back issues, unable to pull up my own knickers unaided, relying on frozen meals and passing friends.  The full glories of that time can be read, if you’re so inclined, in my posts on recovery, here and here

It’s also not hard to remember how, back in November 2018, I felt like I’d never be myself again.  How I regretted taking my previously fully functioning body for granted, how it seemed cruelly ironic that I felt so much sicker now that the cancer was out of my body than I did when it was spreading.  It felt like there would never be ‘normal’ again.  And there wasn’t.  I’ve said it on this blog many times and I’ll say it again.  There is, post-cancer, for most people, only a ‘new normal’.  That’s a phrase that’s been bandied around a lot in 2020 as the world has adapted to both the sudden onslaught of the Covid-19 pandemic and the resulting slow decay of life’s recognizable routines.  But in the cancer world it’s long been an expression used with both hope, as people search for a positive way to approach the long term impact of their cancer, and frustration, as the reality of that impact bites.  

In the two years since I was officially declared NED (No Evidence of Disease, which is as close to ‘cured’ as you get in breast cancer), I have adapted to my new normal.  I’m pretty much back to doing all of the things I did before my diagnosis.  Mostly eating chocolate, reluctantly dragging my ass out for some exercise, playing escape rooms, going to the theatre and trying to replicate the ‘Great British Bake Off’ technical challenges in my own kitchen (take a look at my Instagram feed if you want to see how that worked out!).  These are all my ‘old normal’ but they also come with the additional ‘new normal’ add-on that means everything happens a bit slower, takes longer, with extra creaks, grunts and grumbles and occasional cliff falls into pits of fatigue. And yes, I still have to sit up if I want to roll over in bed, my reconstructed boob sometimes feels like a lead weight and my tummy is still so tight that I feel like I’ve been glued into a pair of Spanx.  I’m still a bit broken. But that’s all bearable, manageable, and I’m luckier than most, not having to deal with extra side effects caused by chemotherapy and radiotherapy. 

My body has settled into its new normal too.  It has found its new shape.  Slightly uneven boobs (sisters, not twins), with one flat on the front thanks to an absence of nipple. A flatter stomach (despite Lockdown 1.0/2.0 doing its best to bugger that right up).  The scars on my breast and running hip to hip on my tummy, which were so red and vivid two years ago, are now paler, softer, flatter.  They blend in a little better, are less aggressively visible. But even after two years of living with those surgery scars, my mind still struggles to comprehend and accept the marks that cancer has left on my skin.  I’ve spoken before about having to distract myself while massaging those scars, then abandoning the practice completely.  Something I feel horribly guilty, cowardly, about even now.  My mind skitters away from fully comprehending, recognising and accepting them as part of the new me.  I hold much at bay, at arm’s length, pushing it down, trying not to dwell or deal. But I can’t escape the fact that my physical scars are going to remind me every day, for the rest of my life, what cancer has done to my body and mind.  They have faded, and will fade more as I grow older, but I also know they are a permanent marker of the path cancer traced across my skin and my life. 

But I’m trying to train my brain not to think of these scars as ugly reminders of something terrible, of the price my body has paid for fighting cancer.  In an attempt to see my own scars in a different light, I’ve become a bit obsessed with broken crockery and the Japanese art of ‘kintsugi’.

Kintsugi (translated as ‘golden joinery’) is focused on repairing broken items of pottery with a lacquer mixed with gold powder.  By using golden glue, those joins where the broken pieces have been put back together aren’t hidden or disguised but embraced and celebrated.  The philosophy of kintsugi says that the breaks, and the subsequent repair, should not be ignored, but valued as an indicator of the hard history of that item.  By adding gold, that history, the cracks, the breaks and the struggle to bring about repair, make the broken item of crockery even more beautiful than before.  Kintsugi recognizes the fragility of the broken piece, but also testifies to its strength by making the new bonds glow and shine, to celebrate that which is holding them together.  

To me, this is one of the most beautiful concepts that a cancer survivor can apply to themselves.  Now, I’m not suggesting that everyone tattoo their surgical scars gold, although it is somewhat tempting.  Instead, I’m trying to embrace the philosophy behind kintsugi as a way to accept my scars, both those visible on my skin and those hidden in my heart and mind, as evidence of both my fragility and my strength.  Bodies do break and break down.  The human form is fragile, even when we’re young, and there’s no shame in being ill, so why should we be ashamed of the scars that mark us out as having endured?  Because, alongside the suffering these scars, these breaks in the pottery, also show endurance, strength, resilience, determination, sheer bloody-mindedness, and, we hope, recovery.  No-one asked for them but, just like a piece of kintsugi-rescued broken crockery, our scars are part of our cancer, and life, history.  And they make us, and those in our lives, aware that we are vulnerable but precious, fragile but capable of repair. 

Fragile, but capable of repair

Of course, when active cancer treatment has finished, anxieties about the future still abound – we worry about the risk of recurrence, of developing secondary cancers, the impact of depleted energy resources, the possibility of resuming work and the damage done to our mental wellbeing.  It’s too simplistic and insulting to assume that because we have finished treatment we can simply ‘move on’ or ‘return to normal’.  But for those of us lucky enough to be officially cancer-free, the kintsugi philosophy asks us to see those emotional scars and continuing anxieties as markers of our resilience.  We might not feel resilient or brave – I hated anyone telling me I was brave during treatment.  I wasn’t brave. I cried and raged a lot.  I got on with it because I didn’t have any choice – but the golden lacquer shows what broke us initially was overcome.  We face continuing physical and psychological challenges, but with a history of obstacles overthrown marked into our skin and our psyche.  It is glued into our repaired bodies and recovering minds.  

After a mastectomy, with or without reconstruction, there are choices open to women about how to find peace with their new look, whether they are flat on one side or both, whether they have had nipple-saving reconstructions or are now nipple-less.  The variety of choices is as wide and as wonderfully diverse as the women who make them.  There is no right or wrong answer, everything is personal, every decision is individual.  For some, that decision means embracing remaining flat, for others the final step in the long cancer road is having a physical nipple reconstruction (a kind of skin origami which folds breast skin into a nipple shape).  Or there’s the option of an NHS areola and nipple tattoo, or, privately, a 3D, incredibly detailed and life-like nipple tattoo.  Each choice can lead to a sense of completion, to a closing of the cancer door.  My Facebook cancer forums are filled with women who are thrilled by their nipple tattoos and happily admit they feel ‘whole’ again, that they didn’t realise how much a nipple ‘completed’ them until it was absent.  The work of the tattoo artists who privately create such realistic replicas is astounding.  And heart-warming, with many offering free services to breast cancer patients. 

But for me, personally, I’ve always known that a replacement nipple isn’t that important.  I don’t feel ‘less’ without one and as I would know it’s not ‘real’, and anyone who got close enough to see it (chance would be a fine thing) would also know, I, personally, don’t see the point.  Again, as I said, it’s not a question of right or wrong, it’s entirely personal opinion.  And it’s intriguingly leading me down a path I never thought I’d even consider.  

You see I’ve never been much of a one for tattoos.  I have friends who have some, I have friends who have many and I have friends who are, quite simply, addicted to ink.  But I never saw myself as a tattoo type of girl.  Possibly because I’m so freckly pretty much everywhere that it could end up looking like a bad case of ‘join the dots’.  On the other hand, since losing my breast to cancer, I’ve been fascinated by the stunning skin-inked artwork women have chosen to cover their mastectomy and/or reconstruction scars.  These women have opted to put their own bold, beautiful stamp on their bodies through a tattooist’s ink.  To honour what has been lost and to shout to the world that there is beauty even in scarred and damaged tissue.  There are Instagram feeds and Pinterest boards aplenty showing some sensationally creative, fiercely bold and beautifully delicate mastectomy tattoos.  I’ve been drawn time and time again to the work of two particular British tattoo artists – Anna Garvey (on Instagram as @anna_adorned) and Dominique Holmes (on Instagram as @domholmestattoo). Their trademark styles are completely distinct and diverse, but they both have a beautiful respect and compassion for the women they are inking, acknowledging the emotional need that brought the women to their doors.  Knowing that for many the artistic covering of their scars is a reclaiming of power and ownership, a hopeful closing of the cancer chapter of life and a kintsugi-style transformation of scars from reminders of pain and fear into symbols of strength and beauty. 

I’m at the very early stage of researching designs to cover my circular breast scar. Currently amongst my ideas are a rising phoenix (inspired by ‘Supernatural’ actor Samantha Smith‘s, ‘Rise’ fund-raising campaign. As a two time breast cancer survivor Samantha and her campaign offer a whole heap of inspiration). But I’m also thinking possible peacock, because their feathers are so damn elegant and gorgeous, and because they symbolise the beauty that comes only when our true colours are on display. And that sounds like a kintsugi kinda bird to me. And finally I’m also trying to work in the Winchester brother’s demon-warding sigil, because Sam and Dean saw me through a lot of dark cancer days and what says ‘fuck you cancer’ better than demon-warding from a fictional TV show? So there are a multitude of conflicting and confusing concepts all swirling around my deeply unartistic brain. I’m hoping a talented tattoo artist, like Anna or Dom, will be able to rein in my over-active imagination and find a fabulous combination of images that say ‘goodbye cancer, hello world’.

For me, it seems strange that the scars I see every day, my daily jolt of cancer remembrance, will eventually be forgotten by most of the people I know, even close friends and family, because they are hidden, even under the skimpiest of clothes.  So I see a scar-covering tattoo as a contemporary body-art form of kintsugi. I hope it will allow me to reclaim my own body, my own sense of self and remind the world that I have been broken but repaired.  

Moving on is always going to be hard when you bear scars.  But maybe with a glint of gold in my post-cancer wounds, be it real tattoo ink or metaphorical mind-glue, I can continue the process of healing and re-forming into a new, fragile but resilient, kintsugi-d me.