words about cancer

The Power of Words with Maggie’s

 Around the time I was diagnosed with breast cancer in 2015, I wasn’t aware of anyone like me talking about their cancer experience in an open way. There were blogs and there were websites, but these were largely aimed at older women. I felt so far removed from the conversation these websites were having, I decided to start my own. I began blogging about my experience, not only as a way to come to terms with the treatment I was having and the things I was facing, but to open up that conversation that felt completely unlike me.

When you’re dealing with something that no-one really wants to talk about, it’s hard to find the words to explain things. Likewise, it’s hard for those around you to find the words to say what they really mean when they’re faced with things they can’t understand or don’t really want to think about. When it comes to cancer, the language used around the topic is incredibly divisive and it’s something every cancer patient I’ve spoken to has strong feelings about, regardless of where they are with their own experience. For me, I was staggered by the way people described me as “brave” and “inspirational” when all I had really done was go about the business of tackling the cancerous cells that had made their home in my right breast. And since I entered the world of cancer, the language people use to describe this world – from “battle” to “journey” to “suffers” and everything in between, has become something I am incredibly passionate about.

Research around this topic is becoming more and more important as more people survive cancer. We all know the stats. 1 in 2 people will be diagnosed with cancer in their lifetimes, but more and more people are surviving beyond the 10 year survival rates often hauled out to show how treatments are improving. In 2015, Professor Elena Semino, a linguist from Lancaster University looked at the ways people talk about going through cancer treatment. The research, which studied 1.5 million words showed that the most used metaphors for talking about cancer are “violence metaphors” – i.e “battle” “fight” “war”, and “journey” metaphors. Semino went on to explain that often, patients feel disempowered by these kind of terms because they feel “they aren’t given the right “weapons” to fight or that the doctors are “the generals” and they’re just common “foot soldiers” in the fight against cancer.

The research also added that while calling cancer a “journey” doesn’t create the opportunities for failure, it’s not necessarily better. It can provide comfort to think of others on the journey with you,  but  “for some other people, there is this idea of a reluctant journey. One person says ‘how the hell am I supposed to navigate this road I don’t even want to be on.’”

I never want to claim that I speak for all cancer patients, so I asked the network of people I have met during my own cancer experience for their thoughts – and wanted to share a couple with you…

Izzy told me: “I loathe ‘brave’. I’m not brave, I’m just me and you would be too in this situation. Also again with the implication that to admit you’re struggling makes you ‘not brave’. It’s so toxic”

while Harriet added: “I hate all the fighter stuff – it’s only used for cancer and not for other serious illnesses (heart disease fighter, diabetes fighter, MS fighter..!)”.

Jacob said: “I’m not a fan of the whole ‘fighter’ and ‘positive attitude’ tags. It invites unneeded pressure on cancer patients already going through so much. I mean try being positive when you’re a shadow of your former self with poison coursing through your veins with a medicated depression caused by prednisone. It’s completely unrealistic and would test anyone both physically and mentally.

Shelley looked at it totally differently and said: “I’m not a fan of people saying I beat it or I’m better now etc, defensively I take that as though I should be over it now when in reality I’ve found it harder mentally after active treatment than during.”

Joh added: “While I was having treatment I hated the term ‘fighter’ as it felt totally out of my control and that I was merely doing what was necessary rather than actively kicking arse. It was only afterwards that I agreed it was indeed a battle so the obvious term to use is fighter although I think soldier is more appropriate (semantics!)”

Zoe: “I personally like the fight talk but I don’t use it to people who don’t like it. I’m never offended if someone asks me not to use it as it’s a personal choice.

Sarah: “I got sent a document the other day by a well-meaning friend that had the phrase “cancer victim” in its opening gambit. Never considered that word before then.”

These are people who have experienced all different types of cancer and are at totally different points within their treatment plan. While the opinions differed from person to person, pretty much everyone I spoke to had some form of strong feeling about the language around cancer – proving what an emotive, divisive and difficult topic it is.

But there was one response which was largely unanimous. Every person I spoke to agreed that they did not like the fight analogy when it was associated with someone who had “lost”. The use of this phrase suggests that people who die as a result of their disease haven’t fought hard enough. That they didn’t win because they didn’t give enough to their treatment. I’m pretty sure the dislike of the term “lost their battle” is, for want of a better description, a hill which any number of cancer patients would die on.

This week The Guardian ran an article off the back of some research by Macmillan that explored the idea that “Pressure to stay positive may be a negative for cancer patients”. This is another point of view which was widely echoed by the people I spoke to. As Jacob mentioned, it adds unnecessary pressure to patients at a time when they are already facing more pressure then they know what to do with. They are living in a powder keg and giving off sparks. This is something I 100% recognised from my time in cancer treatment. I was scared and I was vulnerable and I was exhausted – but whenever anyone asked me how I was doing, I slapped a big smile on my face and told everyone I was “doing fine – all things considered”. My mum has always said “fine” means “f*cked off, insecure, nervous and exhausted” which at that time I think was totally accurate. The pressure to be positive suffocated me. It still suffocates me now. I remember reading an article that suggested those who were prone to depression before a cancer diagnosis were more likely to die of their disease because of the lack of positivity in their life. I have lived with depression for most of my adult life – this idea that positivity could affect my chances of survival was, and is, terrifying to me.

***

I think it’s important that every patient creates their own metaphor for their cancer experience. I read something that suggested that having cancer was a bit like seeing someone you’d rather avoid at a party. As far as you’re concerned, you just want them gone. They’re there, and there’s nothing really you can do about it, so you just have to co-exist together until the end of the party. I vividly remember the line “you eye each other furtively across the room” but you never interact. Then, when the party’s over you’ll go your separate ways. I’ve heard having cancer being referred to as having an unwanted house guest, but even prefixed with “unwelcome” or “unwanted”, “guest” makes it seem like they’re a bit welcome, or they might have been once. So during my treatment, I called my cancer a squatter. Unwelcome. Unwanted. Naming it in this way gave me some sort of control over a situation that was far beyond the realms of my grasp.

But no matter how the individual describes their cancer experience, we’re a long way from the media nailing how they do it, and doing it in a way that sits well with those who have a lived experience of the disease. Despite ongoing campaigns from charities to change the way the media speaks about cancer, they often still reach for the same tired old cliches, often without realising the impact this has on those who have had or are undergoing treatment for cancer.

Here’s a couple of headlines and quotes from news articles covering those who have died from cancer (bear with me, I know this is a bit bleak)


“Labour’s Tessa Jowell dies at 70 after cancer fight”

“Alan Rickman died in January 2016 at the age of 69 after a battle with cancer”

“David Bowie died Sunday after an 18-month battle with cancer”

“Patrick Swayze loses cancer battle at 57”

“Actress and singer Bernie Nolan has died at the age of 52, following a long battle with breast cancer.”

It seems like the media struggle to find anything other than lazy euphemisms to describe these people – when often their lives have been rich and full and surrounded by dazzling achievements. To see them reduced to a “battle” they have “lost” seems to diminish every other part of the their lives.

I think in the age of social media, the role of those who have or have had cancer as advocates for this and so many other things that affects us is essential for driving change. It’s so important to acknowledge that the way we talk about cancer as our first hand experiences can have a hue impact on the way others think and feel about cancer. The advent of social media has allowed us to open up the conversation around cancer in a way we never have done before, and in doing so we’re constantly reducing the taboo. We’re no longer talking about “the big C” in hushed tones, refusing to even use it’s name, like some kind of health related Voldemort. And opening up the conversation this way means that we’re spreading awareness. Awareness leads to education. Education leads to improvement. We can talk about problematic boobs that try to kill you, fannies that give you grief and the for want of a better word “shitty” symptoms you should be looking out for for bowel cancer. The more we do this and the more we humanise this disease which has been personified into a spectre of darkness and terror, the more we can drive the conversation forward. As we do this, we will be educating more people how to talk to their pals who have had cancer, and we can call on them to call out the media for clumsy descriptions of an untimely death.

But, from my point of view I think there are a few things that are important to remember. As far as the media is concerned, it’s more important than ever for the cancer community to take charge in holding them accountable for their descriptions. So next time you see a headline that says “lost a battle” – tweet about it. Write a letter to the editor (old fashioned but I reckon it’s worth a punt). Use your experience to empower others and educate to the best of your ability.

But I think when it comes to family, friends and well-meaning well-wishers, kindness and understanding is key. Remember the person you were before cancer and how you would have felt in the situation they’re facing. Remember when regular folks are talking about cancer, they’re doing it to the best of their ability. I know that I would have been guilty of succumbing to some of the cliched stock phrases people to turn to before I lived in the cancer world.

It’s key to remember that, most of the time, people are doing the best they can in the circumstances they face.

 

**This piece is a talk I gave as part of a Power of Words event at Maggie’s. Maggie’s offers free practical and emotional support for all people living with cancer, and their family and friends. Their centres are a home away from home tucked into corners of hospitals and NHS spaces around the UK. The centres all aim to be a place of safety and security for those experiencing a cancer diagnosis. I visited their Barts centre and they have created something truly wonderful for their service users. If you’re going through or have been through cancer and need some time, space or expert guidance, find your local Maggies.

My Grandma Constance

My beloved Grandma Constance died on 24th February, four days after her 93rd birthday. She was an incredible woman and I am exceptionally proud to have called her my family. Here are two pieces of writing that I put together before and after her death. The first, I read at her funeral, the second I wrote as she was on palliative care, towards the last days of her life. I saw her last on her birthday. The final thing I said to her was “I love you”. The final thing she said to me was “I love you”. I will hang onto that forever.

My Grandma Constance

My Grandma Constance was a tour de force. I have admired her for as long as I can remember. I don’t know if she ever realised how responsible she was for shaping me into the human I have become.

I have been moulded by her love of words and reading. This made me into a voracious devotee of the written word myself and an avid writer. She bought me my first thesaurus when I asked her what another word for “kerfuffle” was. I think I was about six.

Her intense attention to detail when it came to spelling and grammar made me a total pedant when it comes to accuracy. She taught me to spell and she taught me the right place to put a comma for both practical and poetic reasons.

Her insatiable curiosity fed my innate need to ask questions. I want to know more, to experience more, to live life in a state of constant inquiry because of her. I remember the time she read Harry Potter, because she wanted to know what all the fuss was about. She never got past The Prisoner of Azkaban, the third in a seven book series because the Dementors gave her nightmares. But her need to know meant she had to find out why everyone was talking about “this Harry Potter boy”.

Her baking taught me to love the attention to detail required to make culinary delights, but I carry it with me in my every day life too. I used to sit on a stool in the kitchen as she pottered around and watching her make delicious treats out of raw ingredients seemed like magic to me. That’s not even mentioning the results of her time near the cooker – my favourites will always be her Smartie topped chocolate buns and the crunchy, rich fridge cake she’d rustle up from a hand written recipe. I’d live on the fruits of Grandma’s labour in the kitchen until I turned 93 myself, given half the chance.

I have acquired her fiery streak, her sharp tongue, her cold hands and her warm heart and her love of daffodils. Chris jokes that I am going to bypass turning into either of my parents because I am already my paternal Grandma.

She was the very best of the humans. Kind to the core, compassionate, brilliant, determined, warm and fierce. She was stubborn and she was witty and she was effortlessly intelligent. I often wonder what she would have done with her brain had she been born 60 years later.

Losing my Grandma has broken my heart. But in losing her, I’ve taken some time for reflection, time that we’re all guilty of not granting ourselves often enough. I have sat back and looked at our whole picture together, a picture spanning almost 30 years. It is a beautiful picture. Full of love, laughter, joy, goodness – and chocolate buns.

I loved her very much. I love her very much. I will miss her immeasurably. But I am so very grateful for every single minute I got to spend with her.

Grief

I’ve spent a lot of time over the last three years grieving. Cancer takes so much from you that with every piece that is removed, there is a process of grief. I have grieved for my hair, for what my body used to be and all of the phases it has been, I grieve for the time when I didn’t worry about cancer reappearing in my life, and the times when I hadn’t confronted my own mortality head on. I grieve for the career I might have had, the things I might have achieved. I have become very familiar with grief in the almost three years since they told me it was cancer.

But I had forgotten how it feels to grieve for a person. I had forgotten the all encompassing, enveloping heartache that comes with losing a person you love. I had forgotten the breath-snatching feeling of getting a call to say that someone you’ve had in your life, for your whole life, is fading. I had forgotten that even though you spend your whole life preparing for your grandparents not to be here, when one of them begins the process of leaving, a world without them in it seems inconceivable and ugly and harsh.

And while this falls under the same umbrella term of “grief”, the two are worlds apart. There are oceans between the feeling of losing yourself and losing a loved one. The number of capital cities between the two is overwhelmingly high – there are vast continents stretched out between the state of Self Grief and the feeling of saying “I love you” to someone for the last time.

I had forgotten what it was like to grieve for a person. But this week I am remembering as my Grandma lies and fades in a hospital bed, 53 miles away. But I am remembering her chocolate buns – my favourite baked treat, the fluffy Easter chicks on her April cakes, her jokes about feeding me boiled eggs, her insatiably curious mind, her warmth and her love of words. Her stubbornness and her fiery streak, her sharp tongue.  The blurry days of my childhood when she sang “I thought I saw Puddytat”.

I had forgotten what it is like to grieve for a person. But I had forgotten what it is like to sit back and see our whole picture together too. And what a beautiful picture it is.

(IN) Equality

Every 8th of March the same question is asked

“When did we celebrate International Men’s Day last?”

“It’s the 19th November” voices reply

But the questioners don’t notice, don’t bat an eye.

“Well we don’t make a song and dance” they say

“We don’t kick up a fuss in quite the same way

Why are you using your voices to make such a row?

Haven’t you heard there’s equality now?”

“Equality?” I think as I start raising my voice

Not when there are people who can’t help but rejoice

At a deftly created rape joke delivered with a smile

Because it’s all just banter isn’t it? Not vitriolic bile.

But then there are women being killed by their ex

Beaten and belittled because of their sex

Only six of the FTSE 100 have female CEO’s

And women who are raped “deserved it, those hoes”

Because their “skirts were too short” or they “got too drunk”

It’s their fault, isn’t it, not down to that punk

who took advantage, didn’t get consent

Thought he could do what he wanted without her assent

Yes we can vote, and yes we can thrive

As long as it’s in a way which doesn’t seem too contrived

“The PM’s a woman” the meninists decree

“And the Queen is a woman, so just leave things be”

But we “feminazi’s” can’t let things go

While the media picks out something else to show

Us we’re not perfect, not doing as we should

How skinnier is better and pretty is good

When trans women are told they’re not real women at all

And board members “belong in the kitchen chained with a ball”

As women are ejaculated on on the tube

As we’re felt up and catcalled and harassed by some dude.

“Equality?” I think as I start raising my voice

We are feminists, we do not have a choice

But to stand up for our sisters and others as well

Every woman we know who has been going through hell

While being battered and damaged and kicked and destroyed

raped and murdered and belittled by boys

Underpaid, overworked, judged and harassed

Nothing more than a pair of boobs and piece of ass

So every 8th of March when the same question is asked

“When did we celebrate International Men’s Day last?”

I’ll stand with my sisters, intersectionality first

And say we know #NotAllMen are the worst

But tell them we have a long way to go

That the patriarchy is still very much in full flow

We’ll stand our ground and fight for the day

When women and men are treated exactly the same way.

No Cure for Heartbreak

I have been watching a lot of Grey’s Anatomy recently. I discovered it was on Amazon Prime and I started watching it from the beginning. Some people say it’s depressing but in those early days, the dialogue was quick witted, sharp, moving and funny, while the storylines pushed the boundaries of medicine and beyond. You’d think given the amount of time I’ve spent in a hospital over the last three years, and given the fact that my own hospital gives me palpitations every time I visit, that I’d want nothing to do with a medical drama. Sometimes I don’t. But as with most things I find comfort in the familiar and the old storylines and well-worn characters offer me some kind of safe space. A space in which I can exist without my mind for a while. It’s chewing gum for the brain with a heart.

Obviously watching Greys, you see a lot of surgical scenes. You see amputated limbs and gore and loss and the medical terminology washes over you like a second language you’re almost fluent in. You hear talk of scalpels and defibrillators and “apis” and sutures. Sutures. That’s the one I have become fixated on of late.

When I had the tiny cyst removed from my left breast when I was 19, I remember asking them how many stitches they had used. There were eight of them, I think. I’d never had so much as a cut really, before then. Nothing more than a papercut. So I was fascinated by the idea that these little stitches had been put in my body to tie up the loose ends of my skin and help them knit back together. Now, obviously, I have had my fair share of sutures. I have been cut open and sewn back up eight times in the last three years. I have had little stitches over little holes and lots of bigger stitches over bigger holes. I have had the soluble type and the ones my surgeon has had to pull out and discard. I no longer know how many stitches they have put into me. I stopped asking that question once cancer was part of the equation.

But these sutures have helped my scars heal cleanly and tidily. The scar across my breast is hair thin at points – an absolute credit to the man behind the cutting and the teams behind the stitching. My chest is a battleground and the sutures were key in helping to rebuild the damage that cancer had left behind.

But there are a lot of other places I could do with some sutures. Some little stitches to help do-up the other scars that cancer has left behind. And the wounds that I leave behind on myself as a result of harsh words or criticisms or unreasonable expectations that I apply to my life. The places where I feel I am ripped open again and again – where the fear slips in and the heartache begins or where the old wounds are failing to scab over, but continue to come unstuck. There are so many parts of life that can be fixed with carefully applied medicine – sutures, or chemotherapy or radiotherapy or a hysterectomy or an appendectomy or a dose of antibiotics – but there are so many parts of life where you can’t apply a sterile dressing and walk away. Where the sutures will not hold. Where a surgery cannot remove the thing that is trying to kill you.

So what can we turn to when medicine isn’t enough? Today, I baked bread. I left the house. I had a shower and tried to wash all the negativity and bad feeling and tears and emptiness away. I tried to find my own sutures for the cuts and scrapes that life throws at us. It’s funny because the emotional turmoil of cancer doesn’t go away, long after the tumour has gone. If you’re lucky enough for the tumour to go. The emotional turmoil of cancer lingers longer than most people realise. Than I realise myself a lot of days. Sometimes I feel like I am moving forwards, sometimes I feel like I am no further ahead than I was the day my treatment finished. I am still in need of sutures, because the emotional and mental wounds that cancer left behind keep on reopening. They reopen with every surgery, every hospital appointment, every lump or bump or cough or ache. Every dose of bad news. Every loss.

The wounds are healing but they never get the chance to recover completely. Because life and death and everything in between happens and we are expected to buck up and carry on and keep getting up and keep going and be the best that we can be in this world so that our lives are not wasted. So that this chance we are given, this one life we have, can be the absolute best we can possibly make it.

No amount of sutures can heal the cuts that run much deeper than the skin and the tissue and go beyond the body. But we do the best we can.

We will get up every day and keep doing the best we can and hope that it is enough.

We do the best we can and hope that it is enough, because as of yet, there is no cure for heartbreak.

Perfection Paralysis

My Dad has always told me that “procrastination is the thief of time”. It’s something he told me a lot when I was growing up, and something I think about often in my working life. I’ve always been guilty of procrastinating. I often put things off for as long as possible, waiting until the absolute key moment to get things done. I’m the typical journalistic type in that I work best when I have a deadline, because then there’s no dallying. And it’s best if that deadline is set by someone else, rather than me. Because if it’s set by me, I’m much more likely to put it off. This sounds like a terrible quality for someone who works for themselves and is expected to figure out and control their own workload, but I actually think that’s part of the reason being self employed works for me.

But I’ve had a revelation recently. I don’t know if it’s because I’m getting older or because I’m more self aware or a combination of the two, but it seems that I have quite a lot of these revelations these days. You see, as well as being a procrastinator, I’m also a perfectionist. You might not think it if you were to see the way I bake or the presentation of food on my plate, or the disarray of books next to my bed, but when it comes to my work, my writing in particular, there’s a strong part of me which feels that if it’s not perfect, it’s not worth doing at all. So often I find myself with something to write or an idea that I need to pitch and I stop. I end up paralysed by the idea that I’ll never be able to make anything as perfect as I’d like it to be, so why would I bother even beginning? Obviously, I’m able to give myself a kick up the backside more often than not (ALWAYS if there’s a client or a work project involved) – but there are definitely things, primarily ideas I have, that linger by the wayside as I procrastinate them off my agenda.

This is something I have really found with Life, Lemons and Melons over the months since the Kickstarter finished. This is one of the easiest things to procrastinate off my agenda that I’ve ever worked on. It’s a balance for me, at the moment, between doing work that I’m making a living from and work that is essentially going towards a passion project, not to mention the fact that putting a massive piece of my heart and my soul on the line feels like a gargantuan step. How on earth am I not going to screw this up? I suppose it’s no surprise that I hold incredibly high standards for myself. I have done for a very long time in pretty much every aspect of my life. I must be the best daughter, sister, wife, employee, writer, cancer patient, survivor, mental health patient I can be – not being those things, and the pressure I put on myself to do them, is a big part of what sends me into a tailspin that results in my prolonged periods of low mood.

Procrastination, perfection and paralysis are three words that sit together very well, and not just because they are alliteratively pleasant – but because one often leads to the other. When a hearty dose of self doubt is thrown into the mix (and everyone has at least a dollop of this thrown into their genetic makeup), it’s easy to see why people find themselves in a vicious cycle of trying to get things done, freaking out that they won’t be exactly how they want them to be, aborting the thing they’re working on and then repeating the whole cycle when they try to confront the task at hand again. It is exhausting. For such a long time I thought I was just lazy, but it is SO not true. I mean, I obviously am lazy sometimes (what would Sunday mornings be without a lovely long lie in?), but I’m not lazy when it comes to my working life – just sometimes I am incapacitated by my urge for everything I put out into the world to be perfect. Do you know how many half written blog posts I have saved on the back end of this website? Too many. Do you know how many half-written pitches I have for features I’ve been considering and then suddenly decided they’re definitely not worthy of sending? Countless. I have a whole spreadsheet. I have semi-written stories, opening paragraphs of stories and a notebook full of wild and wonderful ideas that may never actually see the light of day unless I break this habit. And I’d bet my bottom dolla that I am not alone.

So what can we do when Perfection Paralysis strikes? That’s a bloody good question my friends, and something I think Liz Gilbert touches on perfectly in her book Big Magic (if you’re at all creative and haven’t read it, beg, borrow or steal to read it).

I keep coming back to Big Magic in times of creative distress . She describes her creative journey as a “road trip”. Those present in the car are Gilbert, her creativity and of course, the unavoidable Fear, who’s main purpose appears to be to tell us that what we are doing is not enough. She goes on to describe the welcoming speech she gives to The Fear before the trip gets underway. She accepts that fear is coming along for the ride – but she sets out definitive rules for it if it insists on coming. She says:

There’s plenty of room in this vehicle for all of us, so make yourself at home, but understand this: Creativity and I are the only ones who will be making any decisions along the way“.

Gilbert goes on with the analogy which perfectly nails what it is to be a creative person who is trying to combat The Fear. Her closing words to The Fear?

You’re not allowed to touch the road maps, you’re not allowed to suggest detours. Dude, you’re not even allowed to touch the radio. But above all else, my dear old familiar friend, you are absolutely forbidden to drive“.

I’ve learned a lot about acceptance over the last few years – I’ve had to accept my body as it is now, I’ve had to accept my experience of cancer and I’ve had to accept my brain for the gifts it gives me. I suppose combatting this Perfection Paralysis is just another part of that – accepting my brain for the gifts it gives me, but not letting it run the show.

And here’s the thing. What is perfect? Who decides what’s perfect? And why do we put so much pressure on ourselves to achieve that unrealistic standard? As with most things, it’s time we gave ourselves a break. So I’m creating a new mantra for myself: “imperfectly finished is better than perfectly unfinished”.

AND HOORAY! I’VE BEEN THINKING ABOUT WRITING THIS BLOG POST FOR ABOUT 6 MONTHS AND I’VE FINALLY DONE IT. It’s not perfect, but it’s DONE!

Here’s a song by Fairground Attraction. When it comes to love, perfect is pretty nice

Future Islands – Brixton Academy, Review

While the lead singer of Future Islands, Samuel T. Herring, looks distinctly like a GP with his sleeves rolled up in preparation to perform a prostate exam, the sound that spreads through Brixton Academy from his voicebox and the collective sounds of the band are quite different.

Future Islands do not look how they sound. Quite the opposite in fact – the cool demeanour in their sound is not represented by their image. Had you only heard these guys on the radio, you’d be surprised to see the four men standing on the stage in front of you. They look more like they’re about to teach a geography lesson than rustle up a heady collection of songs that set Brixton Academy alight with a thrumming atmosphere and make feet tap to the rhythmic beat of the heavy drums and synthy keyboard sounds. And this is something which only seems to add to the magic of their live shows.

The intensely feeling lyrics, such as “People change, You know but some people never do, You know when people change, They gain a peace but they lose one too” from the hit song Waiting on You, enable Future Islands to balance dreamy, futuristic riffs, guitar sounds and the haunting language of the songs with meaning that lingers long after the song has finished. There’s something about their lyrics which speak to the millennial audience gathered. The crowd is hooked on both the sounds and words of each song as if it is an addictive drug, but rather than seeking nothingness from its clutches they are seeking guidance from the wisdom of the song lyrics and escape from the real world with the harmonious melodies. Every song can be related to the real lives of the audiences – we all hear a part of ourselves as Herring performs, throwing himself dramatically around the stage and giving attention to every word he sings.

Herring is a showman like no other, eliciting the full spectrum of emotions from the audience looking on to his performance. From the guttural roars of his low-end vocals to his theatrical, crowd-pleasing dance moves, dazzling high kicks, Cossak moves (yes, really) and overwrought chest thumping feeling of the lyrics, it’s as if every moment of the show is an exercise in exorcising his internal demons. Were it not for his regular interaction with the audience – singing directly to those crammed in at the front of the stage to expletive laden messages about how awesome the rowdy crowd are – it would almost feel voyeuristic to watch the man in front of you come undone and piece himself back together in every song, especially as the band’s latest offerings have become somewhat bleaker, exploring themes of depression, death and loss with in amongst their pithy electrobeats. His energy levels are similar to that of an over exerted toddler on a frenzied high before they crash out into a deep sleep or an exhausted tantrum. Just how much he exerts himself is evidenced in the way his characteristically cleanly pressed black shirt becomes a sweat-sodden memory of a shirt within the first 25 minutes of the show.

Future Islands sound like no other band of the present or from history and the album of this tour The Far Field (released in April 2017) is a rip-roaring success amongst those who require their music to have as much theatre as it does feeling. And boy do these guys know how to put on a show as they edge their way towards the curfew with no hint of winding down anytime soon. When the gig finishes, Future Islands leave behind a feeling reminiscent of the moments just after a storm – an electric atmosphere still hanging in the air and the sense that you’ve just witnessed some of the realest, purest magic the world has to offer.

food

A Love Letter to…Food

When asked what my favourite food is, it’s practically impossible for me to choose just one thing. I can’t even pick one meal, let alone one ingredient. I love the flavours of my go-to recipe, a delicious pork and bacon lasagne while the scents of a Sri Lankan chicken curry can drive me to distraction as it simmers away on the cooker. When I was in treatment for breast cancer, sometimes plain pasta and peas with a knob of butter and a grind of black pepper was the only thing worth crawling out of bed for. A light, fresh and vibrant stirfry is my favourite thing to tuck into when I’ve been a bit overindulgent and there’s really nothing better than a Sunday roast and all the trimmings, whatever day of the week it is. Put a block of cheese in front of me and I’ll happily nibble away at it, whether it’s cheddar, Wensleydale, Applewood smoked or, even, if the mood strikes me, a Babybel. Food, to me, is life. And I find solace in pretty much everything I eat – not just the classic comforts of Shepherd’s Pies and chocolate bars. In a perfect world, I think comfort can, and should, be found, whenever you transfer something from fork to tongue.

Cooking too, is somewhat of a salvation for me. Our little kitchen doesn’t have room for fancy gadgets, nor does it have room for more than one person to be in there at any one time, but the process of taking ingredients in their constituent parts and creating something that makes my mouth water has always appealed to me. When making meals, I so often seek new recipes for inspiration and then find myself thinking that I know better than the chef who wrote the recipe and end up freestyling. I’m an absolute tornado in the kitchen – often throwing not only food but pots, pans and bottles on the floor in my haste to whip up a taste sensation. Surfaces represent food war zones and the cooker top is splattered like a Jackson Pollock work of art but where his colours are varied and vibrant hues of paint, my works of art are made up of slices of leek, splatterings of tomato puree and sprinklings of herbs and spices decorating the cooker top as they miss the pan. If I’m baking, you can expect to find floury footprints on the carpet as I’ve spilled on the kitchen lino and proceeded to absent-mindedly trample it through the house. I once managed to get soy sauce on the ceiling, something I consider to be an accolade. I am never clumsier, nor more sweary than I am when I am in the kitchen, but the experience still has some kind of meditative quality about it. My camera roll is filled with poorly captured photos of dishes that I created that tasted incredible but which I could not translate to film.

At the start of my Boobettes talk, in an effort to introduce myself to the audiences and position myself as a real person, I share a few facts about myself. The line that always gets a laugh, or a slight smile of agreement is one of the most honest statements I can possibly say about myself. I tell them “I love food. If I’m not hungry, I’m thinking about being hungry. And if I’m not eating, I’m thinking about what I’m going to be eating soon.” And I really do love food. I love everything about it. From deciding what to eat (though admittedly, sometimes this flummoxes me more than it should), to carefully selecting the ingredients from the supermarket, to chopping and slicing and cutting and grinding and adding and stirring and tasting, to the slop of a saucy dinner as it is transferred from spoon to plate and the sitting down, knife and fork in hand, taking a moment or two to admire whatever I’ve created. Then I adore the way I can dismantle each mouthful to pick it apart with my tastebuds and identify the tastes and flavours of the ingredients I took in their raw, individual form and made into a meal. The way food brings people together is one of my favourite things about the human race. Family meals on mundane Mondays, everyone crammed around a too small table on Christmas Day, trying a new restaurant with old friends, meeting new friends at an old favourite. These are the details that make up the tapestry of my love of food. There’s nothing I like more than inviting a friend around for dinner and feeding them a home-cooked meal. It is, in fact, probably my only maternal inclination (I have come to realise that I may well be lacking in every other department, genetic or societal, for what it takes to want and to be a Mum – but that’s a story for another time).

But so often women are castigated for an open love of food. A passion for pastries can lead to a squishy stomach. An often fulfilled craving for a casserole can result in rounded edges. A big appetite can lead to a loss of abs. And we are told that these things are not good things. We are told that women should be slender and perfect and not gluttons who eat too much food and need to learn some damn restraint. Far too many times I hear or see women withholding food they want, the food they deserve, from themselves because they don’t want to put on an extra few pounds here and there. They restrict their access to, what I believe is one of the purest pleasures in life – the taste of an indulgent pudding on the tongue; the warm fulfilment and comfort offered by a bowl of pasta, that no other food can offer in quite the same way; the satisfaction of giving into a craving every now and again, because it’s your body’s way of telling you what it needs right now. And it is that want that is important. They are choosing not to eat what they want because society is telling them that they shouldn’t.

There is so much darkness in the world and it feels to me like food is a light that we shouldn’t hold back from ourselves, for fear of us growing spindly and yellow like a plant growing in a dark box. We need to seek out light and joy wherever we can find it, and I genuinely think one of the first places we can find a bit of that light and joy is in the kitchen, at the bottom of a tin of soup, or even under the chicken breast on an empty plate at Nando’s. And we should, if we can, allow ourselves that joy, despite what society tells us we should be doing.

This piece came about as a result of a conversation on Twitter about the incredible food writing of former Bakeoff star and all round food hero Ruby Tandoh and other female food writers. Check out Ruby’s latest piece in the Guardian here and the conversation it led to here.

Trust Your Touch with CoppaFeel!

Pretty much within the hour of being diagnosed with breast cancer in 2015, I decided I wanted to do something with what I was anticipating was going to be the most negative experience of my life. Not long before I finished treatment, I got in touch with CoppaFeel! – a breast cancer awareness charity set up by the inimitable Kris Hallenga. Kris had been diagnosed with breast cancer when she was 23. A late diagnosis meant that by the time she was diagnosed, her breast cancer was already Stage 4. There is no stage 5. Kris’ cancer had become what was known as secondary, or incurable, breast cancer.

Kris was determined that she wanted to do everything she could to stop more young women ending up in the situation that she was in. She realised that early detection of breast cancer saves lives and, along with her twin sister Maren, embarked on a campaign to educate the nation to that tune. CoppaFeel! was born.

I first encountered Kris when I saw her documentary “Dying to Live” during my time at university. I was blown away by the woman I saw before me, and I knew as soon as I was diagnosed that I wanted to join in the mission to stamp out late detection of breast cancer that Kris had started. Little did I know that CoppaFeel! would worm its way into my heart and life in ways I could never have imagined back in the summer of 2015.

I became a Boobette for the charity – one of around 100 women under 35 who have all been affected by breast cancer in one way or another, whether through a personal diagnosis, a scare or a hereditary connection with the disease – about 18 months ago. This group of women is beyond phenomenal. The army of the boob world, the Boobettes go into schools, colleges,  workplaces, universities, community centres, WI’s – basically anywhere that will have them – to bang on about bangers and to stress how important it is to know your own body. I am proud every single day to be surrounded by such a tour de force for breast awareness – and essentially self care. These women have been to hell and back and have chosen to tell the story. I have the utmost admiration for every single one of them.

Then a few months back, I was approached about becoming a trustee for the charity. Much like Liam Neeson in Taken, I had a very select set of skills. Skills I had acquired over a very long short career, that meant I would be a good fit for the board. Social media skills – check; marketing skills – check; previous breast cancer – check; down with the kids – TBC. But of course, I couldn’t say no. I was incredibly honoured to be asked to come into a role which meant I was able to work with the insanely talented team they have in the office and help drive this remarkable charity forward.

And on Friday, these guys made history. History that I was lucky enough to be a part of and that made my feminist side really bloody thrilled. They created an ad campaign which led to the first female nipple being aired on TV. Vogue wrote an article about the campaign. It was featured in the top spot on the BBC news app. Huffington Post, Refinery29 and The Independent all got in on the action too. And I’m so honoured that I got to be part of this. Once again, I got my boob (and where my boob used to be) out in the name of breast cancer awareness.

So isn’t it about time you trust your touch? Give you norks a feel today because knowing your boobs could save your life. Check out CoppaFeel! to see what you should be looking and feeling for.

Life, Lemons and Melons

Hello friends. So today, I have some pretty big news. This has been in the works for quite some time. There have been setbacks and restarts but I think, I’m finally there with the preparation, and so I’m turning to you guys to help.

About a year ago, I had an idea, formed as the best of them are, just as I was nodding off one night. I’ve always wanted to write a book, and suddenly the basis for one presented itself to me. I decided I wanted to write a book about what it’s like to get breast cancer when you’re 26, and you’ve just started getting help for the long lasting problems your brain has given you over the course of your adult life. I am, of course, talking about my old pal depression.

It had reached a point where my dark days were getting deeper and lasting for longer periods. I knew what it was like to reach rock bottom and I didn’t like it there. I wanted help. I didn’t want to hang out in the dark orifices of my brain. They were not nice places to be. I finally made the decision to go to the doctors. I started CBT. I went on medication. And two days before my final session of CBT, I was told that I had breast cancer.

Shit. I’d just spent a few months figuring out who I was and how I could deal with the darkness when it came along, and I was thrown another curve ball in the shape of a tumour growing in my right breast. Oh great, thanks.

Life, Lemons and Melons is the story of figuring out life when it hands you a whole heap of lemons and you don’t have the energy to make lemonade or even reach for the gin. It’s a funny story about things that aren’t that funny and a coming of age story that came a few years later (or earlier) than expected. It’s about mortality, health, the pressures of the modern world, trying to be positive when your heart feels like it’s being repeatedly trodden on by an elephant and finding humour in getting diagnosed with breast cancer aged 26 when you carry a black dog around with you every day.

It’s essentially about the life of every twenty something – but with some added mental anguish and the mild inconvenience which is cancer thrown into the mix. A recipe for disaster? Maybe. A good story? Hopefully.

So why am I telling you about this? Am I about to tell you the book has been snapped up by a publisher in a heated battle between two of the big wigs? Well, no. Not quite. Despite a lot of interest from publishers thanks to my wonderful agent, Robert, it turns out I don’t have a big enough social media following for publishers to be interested in me. They loved the story, they loved the proposal, they loved my writing. But the social media following (or lack thereof) was too big a sticking point for them.

But this is something I have to do. It’s something I have to do for me. I have this book inside me and it is burning to get out. Practically clawing at my insides to make it’s way from my brain to my keyboard. So, I’m going to do it myself. I’ve decided to self publish. But I need your help. And it turns out, the way you can help me is by giving me your hard earned dollar. I’m crowdfunding for the project. I have a heap of options for whatever your budget is, and for every budget you get a copy of the book (whether hard or digital) including my words and images created by my insanely talented and perpetually brilliant pal Georgia Wilmot. And 10% of any profits made will go to my friends at CoppaFeel! so you’ll be helping them help more people get into the healthy boob-checking habit of a lifetime too. I also hope that this book will help anyone who’s ever heard the words “it’s breast cancer” and who’s ever had a fight with their brain.

So how can you support for Life, Lemons and Melons? Head on over to Kickstarter and choose a pledge then share the campaign with your friends, family, colleagues, dog walker etc. If we hit my target of £3k within 30 days, the book will happen. I’ll have to sit down and write it, but as the outline is all there and ready to go, I’m hopeful I’ll just be able to “write the shit out of it” as my friend said. If we don’t hit the target, you won’t lose a penny and I’ll crawl into a hole and pretend this never happened drop the idea, knowing I tried everything I could.

THANK YOU in advance for your help, whether it’s a pledge or a share. I can almost feel the dream of holding this book in my hands becoming a reality.

 

Things I Wish People Knew About Surviving Breast Cancer

More and more people every year are being diagnosed with cancer, in one form or another. Whether it’s lifestyle, environment, diet or any other factors that is causing the increase is very much up for debate, and not a debate I have enough authority to cast my opinion on. But with every new cancer diagnosis, research and treatments are vastly improving too. Now, if you’re diagnosed with primary breast cancer, you have an 80% chance of surviving 10 years after your diagnosis. Fewer people (though still too many) are dying of cancer but we still don’t know  what to do with survivors. The NHS is often too stretched to support people with the mental, physical and emotional turmoil that cancer leaves behind and not equipped to provide the kind of spiritual support people need after going through a life changing experience. So more and more people are surviving cancer, but their needs are often not understood – even by those closest to them.

In the 17 months since I finished treatment, there’s so much I have learned about “surviving” cancer and I thought it might be good to share these with you – so if you’re undergoing treatment, or know someone who is, you might get a better idea of what it’s like when you’re released back into the world. If you’ve been through treatment, some of these might seem pretty negative – but I think it’s important to normalise what life’s like after cancer so that if you feel any of these things (and you might think they’re all WRONG), you won’t feel alone and scared and worried and all the other emotions you experience in The Aftermath of this Life Changing Big Deal thing that happened to you. Buckle up campers,  this is a long read.

1. When I say “I’m tired” I don’t just mean I didn’t get enough sleep last night. It’s not because of the antidepressants I take. It’s not because I need to eat more veg, or get more exercise (but I should probs get a bit more, shouldn’t we all?). It’s because these days, post treatment, I reach a point where I splutter to a grinding stop like a car that’s been running on fumes for the last 20 miles. I crunch to a standstill with zero ability to continue, no matter how hard I try. Nausea. Headaches. Dizziness. Feeling faint. The works. There’s tiredness – which I was very familiar with before cancer – and then there’s fatigue and comparing tiredness to fatigue is like comparing cricket to walking on the moon.

I know lots of people who’ve had cancer treatment don’t find that their fatigue lasts as long as mine has and I am a) jealous and b) want to know all their secrets, but for many people who’ve been through cancer treatment fatigue lingers for various reasons.  The day my friend Izzy came round and did all the dishes I’d let build up because I was knackered was one of the best gifts she could have provided. She told me she found it therapeutic but I know she was doing it because she knew what a difference  it would make to me. These things make a difference, no matter how long it is since you’ve finished treatment.

2. Survivors guilt is real. Real and pervasive. Every time I hear about another person, whether I’ve met them, kind of half know them or have never heard of them at all, who has been diagnosed with secondary breast cancer or have died from it, I get a little crack in my heart. These cracks deepen the more of this news I hear. I wonder why I was, for now at least, more lucky than them. I wonder why I deserved to survive. I feel an overwhelming sense of responsibility to them to be better, to do more, to make the most of the life that I’ve been given. I feel guilty for still talking about my experience because at least the active part of treatment is over for me. What about the thousands of other people for whom treatment will never end? They don’t want to hear me wanging on about this when I’m lucky enough to have wrapped up my treatment.

There are people literally fighting for their lives and sometimes I feel like I should sit down and shut up because my opinion of cancer isn’t relevant because it’s not trying to kill me. I remember when my article was in Red I got shouted down by a handful of people who thought my experience wasn’t valid and that they should have been telling the stories of people with secondaries instead of me. So often I don’t understand why I am still here and so many of my amazing Boobette sisters are not. It’s a bloody minefield – especially if you’re prone to excessive rumination like I am. Survivors guilt is real and will bring up a range of unruly emotions in you. Accept them and remember that you’re doing the best you can.

3. Cancer never really leaves you. Long after you’ve finished treatment, cancer has a way of rearing its ugly head and infiltrating on the life you’re trying to rebuild. Whether that’s annual checkups at the hospital that give you palpitations, nightmares about it coming back, scares about recurrences and the feelings of fear, sadness, heartbreak and everything else you feel are constant reminders of what happened to you. Sometimes I have flashbacks to things, traumatic moments of when I was in treatment, that I’ve blacked out. Sometimes these thoughts hit me like a punch to the temple and other times they just wash over me. I can never judge which way I’m going to react or how I’m going to feel when this happens. But they tell me this is normal.

Don’t forget about what happened to us. We don’t need sympathetic head tilts but don’t panic if we tell you we’re still thinking about cancer 5 years after diagnosis. Ask how we are – and not in a perfunctory greeting way. Really ask. If we’re ok, we’ll tell you. But if we need to talk, that question will feel like a life ring being thrown out to us in the middle of a black and stormy ocean, where we’ve been floundering miles from the shore.

4. I have strong opinions about the language around cancer. I HATE THE FIGHT ANALOGY. I hate the idea that if you die from cancer you “lose”. How can you lose when you’re giving everything you have? How can you say people have “lost their battle” when they were never armed with the right infantries to battle with. Cancer is like Danerys on Drogon, leaving devastation in its path but cancer is never the victor. And it doesn’t matter how hard you fight. Even the best will in the world, the strongest positive mental attitude doesn’t stop cancer cells from multiplying – it’s medicine that does that. And we are not in control of how our bodies react to medicine (whether traditional or alternative, whatever your choice). People die. Don’t use euphemisms. It does them a disservice.

5. I think about death. I think about my death. I make jokes about dying. And that’s ok. I don’t need you to tell me not to talk like that or to “stop thinking that way”. Talking this way is one of my self defence mechanisms and it’s one I really, really need. It might seem negative or pessimistic but it’s the way I’m dealing with this. I know it might be hard for you to think about my cancer coming back. I know it might make you uncomfortable when I crack jokes about not making it to 40 years old, but if I’m laughing, you can laugh too. Laughter is the thing that has saved my life. The reality is that cancer might not just make the one stop in my life and I’m coming to terms with that. I know it’s hard for you too but it’s how I’m going to survive the uncertainty.

6. It doesn’t end after radiotherapy finishes. Having had triple negative breast cancer means I don’t have any further lines of defence against breast cancer but for so many, taking daily Tamoxifen, a hormone suppressant for five or ten years after finishing active treatment is a reality, meaning their treatment continues long after that last blast of radiotherapy. Other breast cancer’s need to be treated with a drug called Herceptin which is usually injected in the months following active treatment. Then there’s the fear, checkups, post-traumatic-stress, depression, anxiety that comes with life after treatment. There’s so much more to cancer than just the treatment part of things.

7. I don’t give a hoot where you keep your damn handbag. And putting a heart on your wall to create breast cancer “awareness” is a sure fire way to make me give you a lecture on how to actually check your tits. Memes about how much you hate cancer are useless and to be honest, kind of offensive sometimes, unless they’re saying that you hate cancer and we all need to do our own bit to make sure we’re doing what we can to make sure we get treatment asap if we do get cancer. That was a long sentence but what I mean is, I’m only interested in memes that tell us what we should be looking out for when it comes to signs and symptoms of cancer, rather than just an “I hate cancer” meme. Dude, I’m pretty sure no-one likes it much.

8. Finding yourself might not be as easy as you hope, but you’ll get there a little at a time. And you’ll surprise yourself frequently by your ability to pick yourself up and get on with shit even when you feel you cannot any more. I still have no idea who I am after cancer, so much so that when I am asked for an interesting fact about myself, it’s all I have to do to stop myself from blurting out “I HAD CANCER” because I feel like it’s a huge part of who I am/was/will be in the future, but also, that’s not ideal when meeting new people. They’d think I was bonkers. They can wait to find that out.