A is for ‘Acknowledgement’

/əkˈnɒlɪdʒm(ə)nt/

noun

1. Acceptance of the truth or existence of something

2. Recognition of the importance or quality of something.

In the last few years I’ve joined a couple of ‘members only‘ clubs. Flashy affairs with exclusive membership criteria that are tough to meet. These clubs have their own form of coded language, a way to identify other members outside the club environment, in the real world, and they have their own protected safe spaces where members can congregate, commune, share lived experiences. This sounds great, you say. How privileged you are. Such exclusivity, such glamour, such elegance. Except these are the clubs where no-one wants to be on the members list. There’s no clamouring wait list of hopeful joiners, ready to pawn their right arm for a key to the door. Because these clubs are cancer and bereavement. Sickness and loss. Physical and emotional trauma. Pain and heartache.

To be honest, before I became an involuntary member of both these clubs, I was, like many of us (especially us Brits) slightly embarrassed and uncomfortable with the idea that they existed. Confronted by recent new club members in the shape of friends who were dealing with grief or sudden serious illness, I was at a loss as to how best respond. It seemed too overwhelming, too big an emotional load to handle, too much of a psychological minefield to cross, knowing that one well-meant but wrong word might set off a messy explosion of grief and pain. It was easier to back off, divert the conversation, steer a path to less loaded and weighty subjects. Looking back now, from within the hallowed halls of these clubs myself, I realise how much I failed those friends who preceded me onto the membership lists. I’ve apologised to many of you in person in recent months. To all the others, I apologise now, unreservedly and wholeheartedly. While I like to think I’m a loyal, loving, supportive friend in general, I have faltered in the past and not always stepped up when needed. I’m so sorry. And to those lost friends who have drifted out of my circle in recent years, presumably frightened by the emotional messiness of the double whammy of cancer and bereavement, I am sad that you’ve left, but I understand. My door is always open.

But the honest truth is, probably even the most empathic of people cannot fully understand what happens beyond the red velvet rope of these exclusive clubs, cancer and/or bereavement, until they are reluctantly admitted themselves. These clubs’ halls are strewn with the shifting sands of fear, anxiety, exhaustion, pain, hope, tears, laughter, loss and recovery. Even from inside the club it’s never clear exactly where your next step is going to land, so how anyone else, still living in the outside world, those ‘muggles’ of the cancer/grief realms, can be expected to plot a path is beyond me.

Before I was diagnosed with cancer in 2018 and lost my Dad at Christmas 2020, I had assumed that those who were facing a life-threatening/life-changing illness or had lost loved ones wouldn’t want to talk about it because it would just be too frightening, too painful. And sometimes that’s definitely true. We don’t always want the conversation to be a grim reminder of our sickness or loss. We want moments where the pain isn’t the sole focus of our lives. But in those days immediately after my diagnosis and bereavement I was surprised by how much I DID want to talk about it. In fact I desperately NEEDED to talk about it, because I knew that if I didn’t talk about my cancer or my Dad openly, then the pent up anger and grief, pain and fear, the constant internalising of worry and sorrow would eventually blow up in my face. Talking about these things is a bit like that thing you do when you’re a kid and your baby teeth are falling out. It can hurt like hell to waggle a loose tooth or poke a tongue into a gappy gum wound. But it’s a surreally pleasant pain, a pain that shows you are still here, growing, changing and, hopefully, healing.

And I had not realised until the days and weeks after I lost my dad that by sharing conversations, about the trauma of a serious illness or the loss of a loved one, that it wasn’t comfort I was searching for. I wasn’t asking friends for a cure for my sorrow. It was the simple act of acknowledgement.

But acknowledgement is hard. Confronted by anguish it is our natural inclination as sympathetic, hope-full human beings to try and help put an end to the pain someone is suffering. It is a noble, kind-hearted, loving gesture. We are creatures who like solutions, who find peace in happy endings (who doesn’t love a ‘and they lived happily ever after’?), who find comfort in resolution and clarity, who want to offer hope to those in dark places. You can hear it in the things we say to friends and family when they face illness and grief: “They’re in a better place now”, “They’re no longer in pain”, “at least it was diagnosed early”, “you’re lucky, breast cancer is so treatable these days”, “just be positive, you’ll beat this”. We offer positivity because we think it will make people feel better. We try to put a spin on a bad news day, to show that there is light at the end of the tunnel. But it’s not always helpful, and often doesn’t do what we hope it will.

Because, to be honest, I did not want my friends or family to try and offer me hope, solutions, ways out of my grief or anger. I wasn’t ready for that step. I just wanted them to see the pain, acknowledge it was there and sit with me for a while as I talked or, if I didn’t feel like talking, join me in my silence.

On a side bar ‘sitting with’ is a phrase that I’ve heard repeatedly since my breast cancer diagnosis. There’s a recognised psychological benefit in ‘sitting with’ difficult, upsetting, painful emotions. It’s hard. It’s so much easier to push challenging feelings down or away, to pretend they don’t exist or that now is not the right time to confront them. I still do this myself – I avoid looking at my breast cancer surgery scars in the mirror because looking means accepting and even now, 2.5 years post-op, accepting seems an impossible goal. And when I get hit by a sudden wave of grief at an unexpected moment, spotting Dad’s favourite chocolate bar in a supermarket, seeing his slippers in the understairs cupboard where he always left them, I force down the tears because ‘now is not a good time’. My fear has always been that if I started crying, about my cancer or losing Dad, I would just not stop. It’s a silly fear. Of course, I would stop, no-one has ever died from non-stop crying. But the pushing down, the pushing away of the emotion is easier than the ‘sitting with’.

Sometimes by treating illness and grief as a problem to be solved, by putting a positive spin on the story, by trying to cheer someone out of a moment of sadness, we are negating and diminishing those feelings of loss or anxiety. When we try to offer cheerfulness because we think it’s better than being sad, we are saying to the person feeling that sadness that it’s wrong, that what they’re feeling is wrong and they need to be positive, upbeat, ‘look on the bright side’ instead. So right at that point in their lives when they want to be seen and understood, their feelings are, unintentionally, erased. While reaching out for acknowledgment and acceptance, they can find they actually end up feeling more alone than before.

That result is never intentional of course. The way we respond to grief, to upsets of any kind, most usually comes from a place of love. It can just send things in the wrong direction.

This video from ‘Refuge in Grief’ does a far better (and cuter) job of explaining it than I can. Please take a few minutes to watch it.

The simple take away from this is that when people are struggling with difficult emotions around illness and loss, they don’t always want solutions, ideas for practical help or a cheery ‘nudge’ to get them seeing the bright side. What they want is someone to listen, to say (and apologies for the very American phrasing!) ‘I hear you and I’m here with you’, to say ‘I can see the pain that you’re in and I’m not going to try and talk you out of it’. This can be hard, uncomfortable, difficult but it can be so much more supportive and appreciated than you’ll ever understand. In the weeks after losing my Dad, I found most comfort with friends who were also in the exclusive bereavement club. The ones who knew from their own lived experience that waggling that loose tooth, poking that gummy wound, talking about the ones we’d loved and lost, making ourselves cry with sadness and laughter about silly snatches of memory, was where the comfort, the peace lay. After my cancer diagnosis, it was only when I found the amazing world of peer-to-peer Facebook support groups (such as YBCN, BRiC and Diep Reconstruction UK*) that I realised there was an online world of women who just ‘got it’. Who knew that on those days when you were overwhelmed by anxiety and sadness, what you wanted was a virtual hug and a ‘it’s just shit isn’t it?’ rather than an overload of toxic positivity that made you feel guilty for not ‘fighting the battle’ the right way by climbing a mountain or running a marathon in a pink tutu.

Now, of course, there are times when a creative, practical solution or a ‘cheer up dude, let’s go get drunk’ might be exactly what is being sought. I have many friends who are highly skilled in the solution-finding, problem-solving, ‘let’s snap you out of the doldrums’ department and they are on speed dial. But the hard bit is working out what’s needed in that moment. Is the friend who is struggling looking for a hug or a route map out of their situation? Do they want a few moments of silent hand-holding or a kick up the butt and a vat of prosecco? While trawling through Twitter a while back I found this excellent suggestion for picking your way through the emotional minefield of a friend’s sadness. Maybe we should all take a leaf out of this couple’s book:

Maybe the next time a friend is having a difficult time, and it doesn’t even have to be cancer or bereavement related, it could just be a rubbish day at work or a tricky patch in a relationship, maybe the best thing would be to ask “comfort or solution?”. If it’s comfort, sit with them in their pain and know that your acknowledgement of that pain is enough. If it’s solution, get your thinking cap on and your wine glasses out. Comfort or solution? Comfort or solution? A mantra to live by.

*YBCN (Younger Breast Cancer Network), BRiC (Building Resilience in Breast Cancer), DIEP Reconstruction UK are closed, private Facebook groups for women with breast cancer. If you have had a breast cancer diagnosis and are looking for support, message these groups via their main Facebook pages to be added to their closed groups.

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.

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.

Photos from (L) Anna Garvey’s Instagram page, and (R) https://www.dominiqueholmes.com/tattoos

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.