The Cancer and Mental Health Equation

You might have noticed October is Breast Cancer Awareness Month. Perhaps you’re all too aware of the fact it’s breast cancer awareness month, because every month feels that way to you. You, like me, might have very mixed feelings about breast cancer awareness month. But before the calendar page flipped and turned from September to October, my pals at Breast Cancer Care launched an incredibly important campaign.

Because the thing is, they do this stuff all year round. They advocate for patients 365 days a year, like so many other amazing charities do. But this caught really caught my attention because it focused on the mental health impact a breast cancer diagnosis can have on a patient. It’s a report that explores the way people feel after going through 10 months, or more, of relentless treatment that strips you of your wellbeing, your fitness, your identity. Because that’s the thing. Breast cancer goes well beyond the tumour that grows in your breast. You know all this because of how much I talk about it – but this campaign from Breast Cancer Care, in partnership with Mind, goes to show just how far reaching these issues are and that I’m far from alone in this.

Over 8 in ten (84%) women with breast cancer in England are not told about the possibility of developing long-term anxiety and depression as a result of their diagnosis.

The research also reveals that 33% of the 3000 women surveyed experienced anxiety for the first time in their lives after their diagnosis and treatment, while almost half (45%) experience continuous fear that the cancer may return, which can severely impact day-to-day life. These figures aren’t really a surprise to me, but it’s pretty sobering to see them written down in black and white. That so many people live in fear or with heightened anxieties as a result of their cancer diagnosis probes that the support patients receive needs to continue long after being told they don’t need to come back to the hospital until their annual check up.

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Samia al Qadhi, CEO of Breast Cancer Care explained “We know people expect to feel better when they finish treatment and can be utterly devastated and demoralised to find it the hardest part. And though the NHS is severely overstretched, it’s crucial people have a conversation about their mental health at the end of treatment so they can get the support they need, at the right time.”

The body- mind connection is undeniable. The two are inextricably linked, and when one is put under pressure, the other naturally struggles too. Stephen Buckley, Head of Information at Mind, says:

“It’s understandable that being diagnosed with or treated for something as serious as breast cancer will impact someone’s mental wellbeing, even if they have never experienced a mental health problem before”.

And it is totally understandable. I spoke to a CBT practitioner at a festival a few months ago and she compared cancer treatment to falling off a cliff edge. You have hit every single branch on the way down and found yourself at the bottom of the cliff, battered, bruised, broken and completely dazed having fallen several hundred feet. But then someone comes to you and says “yeah – but you’re alive, time to get on with it!” but life doesn’t work that way. Because you can’t fall that far, hit the ground that hard and not need some time to process it.

I think the call for support from these two charities is absolutely crucial – but more pertinent to me is the reminder that those who do find it difficult to restart life after cancer, aren’t alone. There are many more of us who struggle beyond treatment than the world would have us believe.

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There’s another thing that I think we don’t really talk about enough – and that’s those people who have a history of mental health issues and are then diagnosed with cancer (and I talk about cancer here because this is what I know, but I feel the same about any illness). What about those people? How are they coping? I mean, I obviously ask this because I am one of these people, but while the conversation around mental health and cancer is unfolding, it’s important to ascertain this too. It’s important not to ignore this crucial part of the discussion. And that’s why I wanted to write my book.

We are getting so much better at talking about mental health but we’re still missing out huge chunks of the conversation – we don’t talk about the nuances of bipolar disease or about those who live with psychosis, even though we can talk openly about our experiences of depression. And we can talk until the cows come home about the impact cancer has on your mental health after the fact, but what about if you were already struggling to tread the tightrope before the diagnosis? Does that impact survival? Does that impact the severity of the mental damage that occurs afterwards?

The truth is, unsurprisingly, I don’t know the answers to these questions, nor how to direct the conversation around the less “fashionable”* side of mental health because I am only one person and only know the experiences of this one person well enough to examine. But I suspect there are different challenges faced by those who have already got health challenges to contend with.

1 in 2 people will get cancer in their life time. 1 in 4 people will suffer with mental health issues in their life time. There is almost certainly a cross section of these people who need to know they are supported. They need access to treatments that can help them put the pieces of their life back together after this, or any other serious illness bombards their lives. And this campaign from Breast Cancer Care is a start. A brilliant start to a conversation that could potentially change and save lives.

“With this book though, the thing you are actually holding in your hands, I wanted to let people know they are not alone. I wanted to offer Albus Dumbledore’s light in the dark. Not necessarily to insist things will get better, because I know that’s not necessarily what you want to hear – but to remind people that the human race knows a thing or two about both suffering and survival. I feel like with that in mind, it’s more difficult to feel totally isolated in your struggles – whether they’re related to mental health or cancer, or something completely different. Someone has been where you are right now. And while that doesn’t make your shitty situation (shituation, some may say) any less shitty, it suggests that survival is possible. Even if it’s just surviving one day at a time. One moment at a time. You’ve made it through every single one of your bad days until now – you can take whatever life throws at you. We are surviving even when we are just living through today and that is enough.”

Life, Lemons and Melons – Foreword

*this is a flippant use of this word. I hope you know I don’t think any mental health is “fashionable” but some is more socially acceptable to chat about than others

** If you’d like to pre-order Life, Lemons and Melons, you can do so right here. The first stage of edits is complete.

30 Lessons from 30 Years in 3000 words

On the 11th September 2018, I’m 30. There have been times over the last few years when I didn’t think I’d make it. But I did. I am here. And I have learned a lot along the way that I wanted to share with you. I know not everyone will agree with all of these, but these are my lessons. The things that I have learned and the ways in which I try to live my life. Maybe you recognise some. Maybe you think some of them are hokum. Maybe you think they’re all hokum. But these are my 30 lessons for 30 years and I wanted to offer them out to you.

  1. Life doesn’t always go as planned
    Sometimes there are more curveballs thrown our way than we know what to do with. Life likes to keep us on our toes. When it rains it pours. But there’s something to be learned from every single curveball that is tossed at us, even if the only thing we learn is how to be really good at juggling.
  2. You can’t go wrong with a sequin or glitter
    Does this really need any explanation? There’s no item of clothing that a sequin doesn’t improve. Sequin boots? Winner. Sequin jacket? Divine. Glittery trainers? Yes please. Sequin jeans? Yep, I’ll even give them a try.
  3. There’s more than one soul mate in the world
    We’re sold the idea that your soulmate is a romantic partner, and while I’m pretty sure I found my romantic soulmate at 17 (god knows how), I have found any number of other soulmates along the winding footpath of life. I genuinely believe a friend can be your soulmate. And they don’t have to stay for long. Maybe they’re there for a season or a reason, but soulmates come in all shapes and sizes and they should be embraced wholeheartedly.
  4. There’s always something to learn
    I pride myself on taking an interest in learning new things, so much so I’m currently talking myself out of doing a masters. But there’s something to be learned every single day if we are open to it. I learn from podcasts, from the radio, from reading books that have entirely different perspectives and explore experiences that I could never encounter. I learn from the news and from re-watching old episodes of Gilmore Girls. And learning is like magic.
  5. No matter how much you read, you’ll never want to stop reading
    If you’re a person who likes to read, it’s a compulsion that cannot be helped. No matter how many words I devour, how many books I manage to squeeze into the year, I want more. I want more books propping up my bedside table. I want more books overflowing from the shelves in our one bedroom flat. I want to read more words because when you read you live a thousand lives and I don’t believe I was put on this planet to live just the one life.
  6. Good eyebrows are essential for framing your face
    I knew a girl at school who’s brother shaved off her eyebrows when she was sleeping and I didn’t understand at the time why this made such an inordinate difference to the way she looked. Then when my eyebrows went MIA and never came back after chemo I learned that eyebrows are totally crucial for framing your face. Bonus: your eyebrows are sisters, not twins. And they should be respected. Because losing them forever is more weird and unnerving than you might think.
  7. Sometimes you’ll identify more with book characters than real life people and that’s OK
    I see myself more in Scout Finch, Eleanor Oliphant and Hermione Granger than I do in most people I know. And truth be told, sometimes I identify more with characters in books more than real people. Because characters in books are usually openly flawed and if they’re pretending to be something they’re not, we as the reader see it from a million miles off. No matter how complex a character is, readers see everything. And that feels so refreshing
  8. Maybe we’re constantly getting to know ourselves
    To quote Joan Didion, as I often do, “life changes in an instant” so of course we can’t fully know ourselves. We can’t know how we’ll react when we’re dealt the cancer card or when we meet a person who will mould us into the best versions of ourselves. How can we know these things? So I genuinely believe we are constantly getting to know ourselves, getting to know the person we need to be at any point in time.
  9. You’re stronger than you can ever imagine. You will bend so much before you come close to breaking
    I have come very close to breaking point more than once. I have reached the very lowest of the low ebbs. But it took a lot more to get me there than I thought it would. And as of yet, I haven’t broken. I have many cracks and I’ve been bent into all sorts of twisted shapes but the fibres of my being still remain intact. I am so much stronger than I think I am. I can take so much more than I think I can and in that I am not alone. I know so many people who have looked hellish adversity in the mirror and stared it down with their own unexpectedly strong will. Human beings can take a lot more than we give ourselves credit for.
  10. It’s never a bad thing to dress like a kid’s TV presenter
    Polka dots, primary colours and an excessive amount of floral patterns make up a glorious wardrobe and there’s absolutely nothing wrong with accepting that. Never apologise for it. Embrace it.
  11. Social media is not real life
    It’s edited images and “content” which shows the best of a highlights reel. It’s not even just the highlights reel – it’s the very best bits of the highlights reel. And the best way to protect yourself from any negative feelings that you might be susceptible to as a result of exposure to this kind of thing is to curate your feed in a way that it makes you feel good. Only follow people who make you feel good about yourself. Don’t follow those who make you question your worth or your body or your character. You are magnificent and you deserve to remember that.
  12. Your job is not who you are it is what you do
    It’s so easy to get wrapped up in the job you do. It’s the first question people ask you when they meet you for the first time so it’s no wonder you feel like it’s such a big part of the person you are, but it is just what you do. It is not who you are. Who you are comes down to the stories you tell and the character traits you possess and how you treat other people. It’s in the way you react to situations that are difficult and they way you look out for the people you love. It is not the way that you earn money. That might be a part of it – but it’s not all of it. You are a multifaceted human being with so much to who you are.
  13. People will let you down. But people will surprise you (in a good way) too
    Whether they’re with you for a reason or a season friends come and go. Some people stick around through the thick and the thin. They’re the ones you need to give your time to. Because some people will let you down. You’ll probably let some people down too because none of us are perfect. But there will be people who continually show up and who surprise you with how great they are. Cling onto these people (not in a weird way) because they are like daylight.
  14. There’s no ailment the sea doesn’t improve (even if just for a minute or so)
    Sometimes I think I was some kind of sea-dweller in a former life, because there is nothing that the sea doesn’t make better for the time I’m stood in front of it, staring it in the mouth, watching the ebb and flow of the tide, feeling the salty breeze on my face and reminding myself that I am a tiny part of a big and beautiful and wild world.
  15. Love comes in all shapes and sizes and hues
    When we’re younger, we’re sold the stories of true romantic love, but some of the greatest loves of my life haven’t been remotely romantic. Love is about so much more than choosing the person you’re going to live with for what may or may not be the rest of your life. It’s who you spend your time with, who you share your life with and who you turn to in those key moments that are the loves of you life. As well as the person you share your bed with.
  16. Having your shit together is overrated (probably)
    Often strikes me that having your shit together might create a bit of a boring life. Half the thrill of living is not knowing how I’m going to react to a situation or set of circumstances at any given moment. It’s living on the edge isn’t it?
  17. Health is key
    A healthy body is an absolute bloody gift. Looking after your body is the absolute best thing you can do for yourself. I’m not talking about going gluten free or cutting out sugar, I’m talking about nourishing yourself with good food and exercise, being kind to ya mind and keeping an eye on the general goings on of your body.  Move more. Find a way of moving that’s good for your body and your brain. Take care of yourself because your body is your home and without it, you’re a bit fucked. (Note: you can’t judge other people’s health by how they look so this isn’t an invite to judge people for not being “healthy” based on their appearance).
  18. It couldn’t have been any other way
    “Let go of the notion things could have turned out any differently”. Maybe you should have gone for that job. Maybe you could have done something differently to hold onto a relationship. Maybe you shouldn’t have eaten that second slice of cake but you did. You did. And that’s the way things are going to be. Not taking that job is probably going to result in something better coming along. Maybe that relationship failure is making way for the person of your dreams to roll on into your life on a noble steed. Maybe that second slice of cake stopped your blood pressure from plummeting and you fainting on the tube. You don’t know what might have been. So try not to overthink. Everything happens for a reason (or, sort of at any rate).
  19. The universe has your back
    I know not everyone believes in this but I genuinely think the universe has my back. There was even some kind of purpose for me getting cancer at 26. I have no clue what that purpose was but it was a message from the universe that I am still unpicking. But generally I trust in the bigger picture and believe that all of the little loose or sad ends will be tied up in a bow and presented to me as a gift. Even if I can’t see it and it takes a while to untie the knots.
  20. There’s nowhere you have to be
    You don’t have to have achieved certain things by a certain age. There’s no ideal age to get married, or to have kids, or to start a new job or to buy a house or to be earning a certain amount of money. You are exactly where you’re supposed to be. And the right age to do any of the aforementioned things is the age that you do it at. What’s right for you might not be right for other people and vice versa. Drive your own drive. Do what you need to do. Your gravestone isn’t going to say “didn’t get married at the right age” or “wasn’t as good at writing as JK Rowling”. So try not to sweat that stuff.
  21. “Busy” isn’t glamorous
    Seriously. Busy isn’t glamorous. Let’s stop glorifying it as the be all and end all of being a successful person. Sure you’re busy but are you busy living? Busy learning? Busy loving? Because those are the busy’s that matter – not the busy being busy that we’re taught is the definition of being good at life.
  22. No-one really knows what they’re doing, they’re just better at making it look like they are
    This is one I keep telling myself on the regular. I often feel like I should have a better idea of what I’m doing because I feel like I’m floundering. But isn’t it in the moments of floundering we find the golden threads of life? The interesting moments that turn things on their heads? Isn’t this where we learn and grow? And isn’t learning and growing the best thing to aim for in life? I think so.
  23. Happiness is made up of little things
    It’s lots of little things that make up a big picture of happiness, not huge romantic gestures or massive numbers on your online banking screen. These things are good but they’re not the key to curating a happy life. To me, happiness is made up of moments and memories. The squeeze of a hand at a difficult time. An offering of chocolate buttons when you’re struggling. A laugh shared with friends. Good food, good wine (Prosecco), good tv, a safe place to live, a good duvet to snuggle under, a good book to read. These are the things that help me create happiness.
  24. Breathing can make a huge difference in pretty much every scenario
    It’s estimated that we take about 23,000 breaths a day, but how many of them do we actually recognise? All too often we’re on autopilot and if we’re stressed or scared or sad or distracted this auto-pilot can become erratic, leading us to snatch our breaths rapidly, which can exacerbate any negative thought processes we’re experiencing and help us regain a bit of control on the situation. I am a true believer in the power of the breath. It’s one of the few constants in our lives, something we can always come back to, to remind us that we are right in the moment, not in the future and not in the past. No matter what’s going on around me, a few deep breaths can be exactly what I need to reset and take a moment. It has been my salvation a number of times.
  25. Change isn’t a bad thing
    Change is scary. Sometimes it’s unwanted. Sometimes it’s unwelcome. But it isn’t always a bad thing. It can be an opportunity for growth or a chance to embrace new challenges and keep learning. Without change things stagnate and stagnation is the gross green slime you see in water sometimes. Change is healthy. Everything changes. We must evolve to keep existing. So if anyone ever says to me “you’ve changed,” I think “good. So I bloody should have”. Change isn’t a bad thing. It might bring challenges with it, but those will often bring great things too.
  26. Passion is crucial
    Life is made up of moments of passion and these are key for living the best life you possibly can. I’ve made a conscious decision since becoming sick to pursue what I’m passionate about, to chase it down with the biggest net I can find so I can catch it and use it to drive me forward. It’s so incredibly difficult to make your passion into your career, but then it’s all the more important to pursue it beyond the 9-5. Passion is what makes me feel alive and reminds me why we do the things we do to keep on living.
  27. The things you tell yourself have long lasting effects – so be thoughtful about this
    Sometimes our brains can be our no1 enemy. I know mine is. Sometimes my brain is a really horrible bastard that tells me the absolute worst things about myself. But it wasn’t until relatively recently that I realised just how much damage those things I’d told myself were doing. So take care with the things you tell yourself. Don’t berate yourself too much. Try not to be too hard on yourself. Because we listen to that voice in our heads a lot more than we think we do. So be kind with the things you tell yourself.
  28. It’s not a race
    Life isn’t a race. You’re not competing with anyone. Go at your pace. Set your own milestones. Run your own journey. You don’t have to be anywhere other than where you are.
  29. Sometimes the only thing to do is to take your shoes off and stand in the grass
    We spend so much of our lives with our feet squeezed into shoes but there’s something really wonderful about taking throwing your trainers to one side and reconnecting with the ground beneath your feet. I know it sounds like nonsense but it’s something my friend Sophie told me about and I genuinely believe that it is a simple way ground yourself in the moment that has massive benefits. And if your feet are in the grass, it means your body is outside and in a bit of nature and that’s more healing than any of us give it credit for.
  30. There’s so much more to learn. So much more living to do.
    I will never stop trying to learn more or stop trying to live the best life I can. No matter how wise we think we are, there is still so much to get from this incredible, wild and wonderful world we live in. There’s still so much for us to do. So many things to experience. So much left for us to give.

Cancer Changed My Life – Does it Define Me?

Every time I meet someone new, I feel nervous. I’m a people person and I love getting to know people, but more often than not I find the first few minutes (possibly longer) of a new encounter excruciatingly awkward. I’m not like my Mother who embraces new people with ease. I have to work incredibly hard to forge conversations, often relying on a bank of stock questions that I pull out when faced with conversing with a stranger. To be honest, even thinking about one of those first time encounters makes me feel awkward.

“What do you do?” is one of the first things we’re asked when we meet someone new and I never know how to answer. I worry about the “what do you do” question for reasons beyond being unable to define my job. One of my key beliefs is that work is not who we are, it is just what we do and I have long since struggled with the fact that our work is usually the first thing we’re asked about. Is that really what defines us? Is there a moral value attached to our careers? When I was interning, I muttered about being an editorial assistant. In my last full-time job, I used to say I worked in marketing, often redirecting the attention to my husband and his infinitely more “grown up job” putting myself down for “messing around on the internet while he’s actually doing something that makes a difference”. Now, I often still defer to Chris’ grown up job but mainly because I don’t know how to define myself. I do so much more than just one thing Am I a writer? Am I a copywriter? Do I work in marketing? Do I tell people I’m writing a book? Because that leads to more questions and ones which are immediately very revealing and very personal. And it means I drop the breast cancer clanger pretty quickly.

Define Me

Since being sick, something I’ve really struggled with is whether I’m “letting” cancer “define” me. The inverted commas around both of these words is important – because I think they both carry a moral judgement. Both have agency attached to them. Both have negative connotations. Because in “letting” cancer “define” me, I’m passing the power from my hands into the “hands” (ha – that’s quite a funny image. A tumour with hands) of a few mutated cells and allowing them to control the narrative of my life. It is something we are told we must not do. “We must not let cancer define us because then it wins”. There are countless articles on the internet telling us just that. But my career is so intertwined with my life outside of working hours now. And a big part of that is my experience with cancer. It’s led to me writing my book, it’s all over my social media channels, it’s smattered across the internet on various websites (including this one, obviously).

To say I am “letting” cancer “define” me comes with a myriad of problems I think, similar to the idea that the way I choose to earn money defines me. Because it suggests that there’s nothing more to me than cancer and my job. It doesn’t allow for my beliefs or my personality traits to come through. There’s no space left for the other experiences I’ve had. And that word “letting” suggests a weakness in a way.

As part of the bigger picture though, would it be a bad thing to let cancer “define me”? It’s a thing that happened. It’s a big thing that happened. And it has dominated my life for the last three years. It changed my life. So, by definition, doesn’t that mean it has defined me in a way? Why does it have this negative connotation attached? I mean, other than the fact that it’s a thing that tried to kill me. Obviously that’s not so great.

Unavoidable

Cancer comes up for me again and again. It is pretty much unavoidable. I know this isn’t the case for every person who has experienced cancer, but it is the case for me. It is so intrinsically linked with pretty much everything I do that I really care about. It’s why I’m a Boobette for CoppaFeel! It is is why I am a trustee for the charity. It is why I am self employed. It is why I can’t commit to working more than three days a week. It is why, until recently, I was in the hospital every couple of months. It has changed my view on the world, it has changed my view of myself. It has changed my relationships and altered my heart in ways I never could have expected.

But, before I got sick, there was so much more to me than my job, and now there is so much more to me than cancer. That said, it has helped me to achieve things I never would have imagined.

I don’t know if cancer has defined me. Before I started writing this blog post I was determined that it shouldn’t be a thing that defines me. I had a work meeting this morning and had to explain why I couldn’t commit to working more than three days a week. Yes, I could have said that it was because of other work commitments, but that’s not the whole truth and if there’s one thing cancer has given me, it’s the courage to be honest.

I was furious this morning because I felt like I had been reduced to a person who can’t be a standard, paid up member of society because I can’t work full time. But the truth is, I know that right now, if I tried to work four days a week, I’d make myself sick. I spent three days at a festival this weekend and in the 48 hours since I got home, I’ve slept for about 28 of them. And I’d have no time for the stuff that is a part of me beyond my work. For my CoppaFeel! stuff. For cultivating the relationships I have and cherish. For looking after my body and my mind and treating them to the things they deserve.

Now, I’ve sat down and worked through it though, ironed out some of the kinks in my mind, I think I’m probably not defined by cancer. Because no person is ever defined by one thing, or one facet of their life for long. We are countless characteristics and experiences and relationships and thus I can never just be a person who has had cancer.

More Than One Thing

I am a person who has had cancer. And it has had a huge impact on my life. But I am also a wife, a sister, a daughter, a friend, a writer, a copywriter, a social media manager, a journalist, a blogger, a lover of the sky. I am passionate and I am humble and I am grateful and I am a maker of great bread. I am a person who loves to read, who loves to write, who loves to cook, who loves thirty second dance parties and singing at the top of my voice. I am a person who has had cancer. I am a person who has survived cancer. I am a person who lives with cancer in their life, even though the cancerous cells have gone. But I cannot be reduced to just one thing. Humans, by their nature, are multifaceted. So even if cancer comes up in conversations with new people and even if it’s the thing they remember after meeting me for the first time, the more they get to know me, the more they’ll unravel the layers. Looks like cancer “survivors” (I use that word in inverted commas too) and ogres have layers in common.

No matter what narrative I choose for my cancer experience, no matter how much it impacts my life beyond my treatment, maybe I am defined by cancer, maybe I am not. Either way I am so much more than my experience of cancer. I am so much more.

Relax and Restore with Nuffield Health

Your brain does weird things when you’re diagnosed with cancer. In those early days, my mind was overflowing with all of the information I needed to retain, a stream of appointments I had to get to, along with coming to terms with the idea that my body was trying to kill me. But one of the things that really sticks with me from those early days is the incredible holistic care services I was immediately made aware of from Dimbleby Cancer Care.

Dimbleby are a charity which operate out of Guy’s Hospital, where I had all of my treatment, and basically provide all of the non-medical support that you need when you’re going through cancer treatment. They offer counselling, financial advice, employment support, complementary therapies and so much more.

We were fairly lucky with our finances so didn’t need a tonne of help there, but the counselling and the complementary therapies were invaluable to both Chris and I across the whole of my active treatment. I was offered six complementary therapies and six counselling sessions (which eventually became 12 counselling sessions because I am needy). The aromatherapy massage that I got at Dimbleby was such a salvation to me. This sounds pretty creepy I guess, but it was so nice to be touched in a way that wasn’t medical, at a time when my body had become some little more than a vessel that had a cancer inside it.

Finite resources

But Dimbleby is a charity. They only have a finite amount of resources and as I move further away from my active treatment, I feel less deserving of what they offer. There are people who need their care more. So I have begun to seek it out, and pay for it myself, elsewhere. My body feels less like a medical vessel these days, but with all the surgeries I’ve had over the last 18 months (five, if I haven’t mentioned it already, ten in the last three years) it still feels like I’m a science experiment a lot of the time. But massage and complementary therapies have really been key in reconnecting with my body, and taking time out to do something just for me.

So when Nuffield Health got in touch with me to ask if I would be interested in trialling a new offering for people living with and beyond cancer treatment, I did a little dance. Last month, they launched their Relax & Restore Cancer Care Treatments – a bespoke range of treatments that have been researched and approved for use on people living with or recovering from cancer.

Regulations prohibit therapists from providing traditional beauty techniques on people living with cancer without specialist training because therapists might need to take extra care or even avoid providing massage or reflexology to areas where surgery has taken place. As a result, all of the therapists at Nuffield Health offering these specialist treatments are  trained by the Made for Life Foundation, a skincare company providing holistic support for people diagnosed with and recovering from cancer.

relax and restore cancer treatments

I went along to the Nuffield Health in Tunbridge Wells to try their Hand on Heart treatment a few weeks ago and honestly, it was 85 minutes of pure joy. I’d had a nightmare journey getting to Tunbridge Wells, accidentally bought myself the wrong bloody train ticket, was running late and by the time I got to the centre I was all of a dither. But the therapist I met helped me move from frantic to zen in about 10 minutes. Sometimes, filling out forms about my treatment can be exhausting and overwhelming for me. I know it needs to be done to get the best possible care but going back over what’s happened in the last three years can be unpleasant to say the least. But my Nuffield Health therapist handled all of this stuff sensitively, listened to my experience and adapted my treatments accordingly.

Because of the nature of the offering, these treatments are less like traditional pound-your-muscles-into-submission massage, and much more of a gentle touch therapy that focuses on, funnily enough, relaxing and restoring both your body and mind. The Hand on Heart treatment offers a relaxing facial and upper body massage that helped me drift away from the stressful journey and into a nigh on meditative state of relaxation. Using slow Tui Na Chinese techniques, the experience aims to rebalance and calm the upper body, while the facial replenishes, nourishes and revives the skin.

crucial part of recovery

Taking this sort of time for myself can feel selfish sometime. And I know my most recent blog was about the nitty gritty bits of self-care that we’re often guilty of undervaluing, but making a point of seeking out tools for relaxation has become a big part of my routine too. Paying attention to your body in this way is a crucial part of recovery. Even if the feeling of not being a medical vessel only lasts as long as the treatment, that’s a valuable time out for your mind, and is, I believe, so incredibly worthwhile.

Prices for the Nuffield Health Relax and Restore Cancer Treatments start from £30 for a 45 minute treatment and therapies are available all over the UK. Find your nearest beauty suite here

**I was invited along to try this therapy by Nuffield Health and Good Relations. They also reimbursed me for my travel but all of my positive thoughts and feelings about this treatment are regardless of that.

breakfast as self care

Nitty Gritty Self Care

 

If there’s one thing I really, truly love in this world, it’s words. I am obsessed with words, with expanding my vocabulary, with using the right words to tell a story, to describe a situation, to ascertain a feeling. Words have been my solace for most of my life. They are my safe place, my shelter in the storm. So of course, I watch with interest when a particular word or turn of phrase ingratiates itself into the mainstream and becomes a widely used “buzzword”. Words like “privilege”, “intersectionality”, “humblebrag” and so many more seem to take up a position in the zeitgeist and represent a huge part of what life at a certain time was focused on. One of these buzzwords, or actually, a buzzphrase, if you will, which has occupied a lot of my brainspace over the last year or so is “self care”.

Because here’s the thing. The idea of self care, while pure in its original intentions, has become somewhat of a cliche. These days, it’s become very much bubble baths and scented candles (thanks in part, some critics argue, to Gwyneth Paltrow’s often criticised website Goop) but allegedly takes it’s origins from the Ancient Greeks. Allegedly Pythagoras was a big believer in taking some time each morning (a whole hour) to ground himself before engaging with other people, claiming it is essential for getting your soul in order,  while Plato’s self care was rooted in taking the time to find wonder in the world.

Depression

For those who live with depression, many of the self care suggestions we see online are a million miles away from firstly, what we need, and secondly, what we could ever feasibly warrant ourselves. I’d love to roll running a luxurious bath and filling it with Lush bath bombs into my routine, but more often than not, if I’m in The Dark Place™, self care is significantly more about brushing my teeth, hauling my monochrome-visioned ass out of bed, forcing myself into the shower and taking care not to listen to the negative thoughts using my brain as a trampoline.

One of my big self care rules is that I will eat breakfast every day, regardless of how I’m feeling. If I’m teetering on the edge of The Dark Place™ or I’m right there in the trenches, breakfast and lunch are one of the first things to go. I’m pretty sure this harks back to the days when I didn’t eat enough or look after myself very well. It’s not an easy habit to shake. But breakfast has become a key part in the battle with my brain and all of the drama that the aftermath of cancer treatment has brought my way.

The revolution begins at breakfast

Most days I just settle down at my desk with a warming bowl of porridge or my signature Breakfast Paste (an apple, sultanas, oats and a tablespoon of yoghurt – more delicious than it sounds, I promise) but other days – usually when there’s no milk in the house – I head out to my favourite cafe in South East London, Brown & Green’s in Crystal Palace for my favourite London breakfast, their Bircher muesli with cacao and sea salt. Breakfast has become a bit of a revolutionary act of self care for me. It’s so simple but it’s effects are widely felt – I’m less lethargic, my fatigue is less pervasive and I know that I’ve done a good thing for myself which can be momentous if I don’t feel like I deserve any of the good things.

Sometimes though, these things slip. Even with the best will in the world, there are days where I sleep in too long or I just “don’t get around” to making myself breakfast and boy can I feel it when I don’t.

But the thing about this breakfast routine for me is that it’s an easy one to stick to. I know that yoga can do wonders for me when I’m not feeling great. I know that exercise, while not a cure-all gives me time and space away from whatever negative self talk is burrowing its way through my skull and into my awareness. I’m aware that I should meditate and I know that I should make a gratitude list. Getting out of the house, or hell, even out of my pyjamas, is something that has the potential to make me feel better – but sometimes, they’re just not accessible.

Depression takes all of the things that you think you should be doing and uses them as a reason for religion free self-flagellation. When my blues are so pervasive I can’t see past the end of my nose, it benefits me to have a singular thing to focus on. A simple objective that helps me get up and start my day, even if it means I crawl straight back into bed afterwards.

the nitty-gritty

This is the nitty gritty of self care – not the “Goopified” (there’s another zeitgeisty buzzword for ya) version we see on websites that aim to make a buck or two from those who are struggling. For me, it is based around self compassion. Self compassion comes from the idea that we should give ourselves the same kindness and care we’d give to a good friend. Food is my first go-to when it comes to taking care of a person, whether a friend or a loved one, and thus it has become my first port of call when looking after myself too.

All this said, there’s absolutely nothing wrong with a self care ritual that involves a monthly massage, a hike in the woods or de-cluttering your room. These are all incredible tools – but I think there’s a risk that these suggestions aren’t inclusive of the people who need them most. Self care doesn’t have to be Jo Malone candles that cost a tonne and facemasks that purify, refresh and hydrate your skin (though they’re good too). It can be something as simple as putting a delicious, nutritious and heartwarming meal into your belly.

For me, the revolution against my brain and it’s negative tendencies starts at breakfast time.

What’s the nitty-gritty act of self care you turn to in times of need?

Life, Lemons and Melons – An Extract (3)

Over this week I have been sharing a chapter of my book Life, Lemons and Melons. Since October, I have been pouring my heart and my soul into a Scrivener document covering the last three years of my life. I’ve written about infertility, self confidence, chemotherapy, my exploding breast, notes from a mixed up mind and tonnes more. Earlier this week, I also saw the illustrations that my exceptionally talented friend Georgia is rustling up to be printed in the book and let me tell you, I cannot wait for you to see them. But without further ado – here’s a chapter of Life, Lemons and Melons. Pre-order your copy by dropping me an email here. Read Part One and Part Two here.

***

But my medication was a salvation to me throughout all of this. And it continues to be. It means that those thoughts don’t linger as long as perhaps they would have done had I not been medicated. They mean that I don’t follow through when my brain is telling me I am worthless and that I do not deserve to be alive. That tiny tablet means the voice that tells me I should have been the one to die, rather than all the others I know who have had secondary breast cancer diagnoses and who have died as a result of this dreadful disease, doesn’t shout as loud or is easier to shrug off than it would be without the medication.

And I know I am lucky. I spend my entire life qualifying everything I say about my cancer experience with “I am grateful to still be here,” but the truth is, I might be, but sometimes my brain isn’t. Sometimes the cruel thoughts in my head tell me that I deserved to get cancer, that I deserved to die from it. That I still deserve to die from it. And it is only a matter of time before I do. And it is a process. It’s something that I am constantly working on rectifying. As I sit here now, overlooking the stunning bay at Port de Soller, watching the birds swoop over the crystalline sea, hearing the bustle of the streets below, wrapped in a blanket and writing about my experience, I am grateful. But I also know that it won’t be long until the dogs start snapping at my heels with their messages of self-destruction. And I think this is something that doesn’t get spoken about often enough, both in the world at large, and in the world post-cancer.

Citalopram has been a saviour for me. It doesn’t come without side effects. I’m heavier than I feel like I should be. I get a dry, metallic taste in my mouth if I don’t drink regularly. Perhaps it exacerbates the fatigue that I experience post-cancer. But when the darkness seeps in at the edges of my life, like a blot of a watercolour paint on a piece of parchment, spreading slowly across the page, Citalopram slows the progress. It makes the black less dense as it makes its way across my life. It doesn’t make the hole I am teetering on the edge of less deep or consuming or terrifying, but it makes it easier to escape from. Citalopram offers a rope to climb. It’s still a difficult journey that takes every ounce of strength and leaves my body and mind exhausted from the intense effort, but it makes it doable. It makes getting out of The Dark Place possible.

And I know there are people that say the longer I stay on medication the more likely it is to stop working. I know others argue that it has a placebo effect, that it doesn’t actually make any difference. Some believe that I will never be able to come off my tablets, but after the last three years and knowing my own mind as I do, I’m not sure I’d be comfortable coming off them anyway. I have fought long and hard to get to some semblance of normality and I still have a long way to go – so why would I give up the thing that makes it easier? I go back to the diabetes reference – I wouldn’t give up Insulin just because the newspaper said my “dependence” on it was problematic. I wouldn’t turn down the chemotherapy that would save my life. So why are antidepressants any different?

Living through cancer is a nightmare, in so many ways. I’m not saying that every person who experiences a cancer diagnosis needs a prescription for antidepressants, but what I am saying is as simple as this: we need to give our brains the same amount of attention we give our bodies when we are going through cancer treatment. We need talking therapies to deal with what is happening to us. We need counsellors to guide us through the hellfire and treat the internal burns that we get as a result. There is no part of your life that is unaffected by a cancer diagnosis and there is no shame in asking for a hand to grab onto at the scariest time of your life. If you’re going through treatment and you are struggling, ask for help. Talk to your medical team about counselling. They know that there is a disconnect between the physical and the mental treatment of cancer and there are conscious efforts being made to bridge that gap. So ask for help. You are not weak, you are not overly emotional, you are not letting the side down by not being positive all the time. You are asking for what you need and that is something to be celebrated.

And remember, despite what the tabloids might say, if you and your doctor believe you should be on medication to deal with your mental health, cancer diagnosis or no, there is no shame. That’s a decision between you and your medical team. Ignore the people who don’t know what it’s like to live with a  gremlin in their heads. Ignore the splashy, attention-grabbing headlines. Ignore the people who bash others down on Twitter. You know your brain better than anyone else. So trust yourself. Even if the gremlin and the media are telling you differently.

Life, Lemons and Melons – An Extract (2)

Over the next week, I’m going to share a chapter of my book Life, Lemons and Melons. Since October, I have been pouring my heart and my soul into a Scrivener document covering the last three years of my life. I’ve written about infertility, self confidence, chemotherapy, my exploding breast, notes from a mixed up mind and tonnes more. Earlier this week, I also saw the illustrations that my exceptionally talented friend Georgia is rustling up to be printed in the book and let me tell you, I cannot wait for you to see them. But without further ado – here’s a chapter of Life, Lemons and Melons. Pre-order your copy by dropping me an email here and read part one here.

***

That’s not to say that choosing to take medication has been a fix-all for me, or that it was an easy process to begin. I felt like hell on earth for the first two weeks on my “happy pills”. It was a while ago now and I’ve had chemotherapy since then so my memory is a bit mushy but I vividly remember feeling like the whole world was falling down around me in those early days. There was a day when Chris wouldn’t leave the house because I had woken up crying and couldn’t stop. At the time, I thought he just felt bad leaving me because I was in such a state, but I know now that he felt like he couldn’t leave because he wasn’t sure if I was a danger to myself. I have no idea if I was a danger to myself but I felt like I my chest had been ripped open and I didn’t know how to stem the intense emotion that was bleeding out of it. When I wasn’t crying, I was lethargic, confused and numb. Without a doubt, the antidepressants initially worsened my symptoms before they made them better. But I was lucky. I had a long-suffering partner who was able to support me as I found my feet and I was well cared for by a stretched but determined primary care system where I had appointments every two weeks in the early days, and every month thereafter until I had settled into the medication.

Not only that, but before I said yes to medication, I said yes to talking therapies. After a few weeks on a waiting list for CBT, I found myself at a session with an incredible specialist called Steve. Together, we began trying to unravel my thought patterns and determine what made my brain tick in the destructive way it did. I began to learn how to combat the voice that told me I was a failure, the one that convinced me I was useless and would never amount to anything. I began to question whether my brain was serving me a thought or a fact. When I told myself that I was worthless, I began to weigh up whether there was any evidence to back up that accusation. Could I, in fact, prove that I was worthless? Or was that just the bully in my brain talking smack? Unless I could provide evidentiary proof, that would stand up in a court of law, I was able to tell myself these weren’t hard facts and I started to pay less attention to them, when I could.

Much like medication, CBT doesn’t work for everyone, but I was so lucky that I was able to go and see a practitioner in the flesh so we could not just talk about strategies for keeping depression and anxiety at bay, but to discuss the things that were on my mind. The human interaction of my CBT was hugely beneficial to me. My therapist never made me feel like I was an inconvenience or a fraud or I was wasting his time – all things I had convinced myself he would. And as I moved through the process and learned more techniques and got used to the medication I was on, I slowly started to feel more human. I was finally figuring out who I was with depression and how I could deal with it so it didn’t impact my life too much. I had begun to recognise the signals, my triggers, the little notes I left myself to suggest that a dark wave was on its way. But then, to quote Joan Didion, life changes in an instant.

It was just as I was finishing my CBT that I found out I had breast cancer. In fact, I went along to my final CBT session two days after I’d been told. At the start of every session, I’d sit down with my therapist and he’d ask me that open-ended question “How are you?”. And his asking of this question was not the perfunctory greeting we so often offer up to those we meet. It was more loaded, a “how are you – really? How is your brain? How is your mood? Have you thought about killing yourself this week? Have you thought about hurting yourself this week? Have you felt at risk at all this week?”

And for the first time, I didn’t answer him with a breakdown of what had affected my mood or exacerbated my depression that week. We didn’t break down, day by day, things that may have triggered a feeling of lowness. I told him what had happened two days previously.

“Well, Steve, I’ve just been diagnosed with breast cancer”.

That was not what he was expecting to hear, but then again, neither was it what I was expecting I was going to need to say.

From there, it became a whole other ball game. I dread to think what kind of position I would have found myself in after hearing the words “you have” and “cancer” in the same sentence and relating to me. If I hadn’t had that CBT and if I hadn’t already been on those antidepressants, I genuinely believe that my depression at that moment would have been a bigger threat to my existence than the cancerous tumour growing within my breast.

What was going on in my brain quickly began playing second fiddle to the things I needed to do to prevent the cancer from getting any worse. I quickly slipped into cancer mode and everything I learned about maintaining my own mental health fell into a massive ditch at the side of the treatment road I was hurtling down at alarming speed. I no longer had time to think about the shitty things my brain was telling me, because it was full up with cancer-related thoughts. Was I going to die? Was the cancer going to spread? Should I have a mastectomy? Can they take both my breasts off? Am I a carrier of the BRCA gene? What will that mean for my family if I am? Am I going to die and leave Chris on his own? How will chemotherapy make me feel? What is going to happen?

Before I really knew what was happening, everything I’d learned in CBT evaporated. It was no longer a priority. My focus swiftly shifted to surviving. The self-care of checking my thoughts and their patterns felt superfluous when I had something actively trying to kill me growing in my body. For a while there I didn’t give my brain anywhere near enough of the attention it needed, when it probably needed it most. I went from combining talking therapies with medication to relying solely on my medication to keep my brain in check. About half way through treatment I found myself really struggling. Christmas 2015 saw me undergo my fourth chemotherapy session. I was exhausted in a way I can’t even begin to explain to you. My spirit was broken and I felt like I was losing myself. It was during this period that I hit below rock bottom. I hit sub-zero. I got so low, I could practically feel the heat of the earth’s core licking at my feet. I had, as I think most cancer patients do, been questioning whether the treatment I was undergoing was worth it. I wondered if it was worth losing my breast and losing my hair and feeling like hell and being poisoned. But for me, there was something else too. I’d gradually gained a grip on my depression as I worked through my CBT and cancer had made me forget what I had to do to stay alive. What I had to do to make sure my negative thoughts didn’t consume me, didn’t take over my life and begin to dominate my waking thoughts. It’s something that I hate thinking about now, but at the time I remember wondering, not only was it all worth it, but did I really want to live in a world after cancer? On more than one occasion I have thought to myself, “If only I had left that lump for longer. If only I hadn’t been in the habit of checking myself, then perhaps it would have spread, and perhaps I wouldn’t be forced to deal with the complex aftermath of surviving this disease”. I hate that I thought that. I hate that there are still times when I think about it.

Because I have wanted to die in the past, and now, post-cancer there is a reason why I might. Sometimes now, I don’t think about killing myself, I think about cancer coming back and doing the job for me.

 

Next part of the chapter coming later this week!

Life, Lemons and Melons – An Extract

Over the next week, I’m going to share a chapter of my book Life, Lemons and Melons. Since October, I have been pouring my heart and my soul into a Scrivener document covering the last three years of my life. I’ve written about infertility, self confidence, chemotherapy, my exploding breast, notes from a mixed up mind and tonnes more. Earlier this week, I also saw the illustrations that my exceptionally talented friend Georgia is rustling up to be printed in the book and let me tell you, I cannot wait for you to see them. But without further ado – here’s a chapter of Life, Lemons and Melons. Pre-order your copy by dropping me an email here.

*****

When I was a kid, I struggled a bit with asthma. It seems that if there’s a weak spot in my the historic health of my family, it’s our ability to breathe well under duress. Any one of us in the Purkiss clan who gets a cold ends up with a hacking cough – you know, the sort that people move away from on the bus. The sort that makes people glare at you on the tube. Or one that once upon a time earned me the filthiest looks I have ever received when I had the audacity to have a chest infection whilst attending an event at the Royal Albert Hall. But when I was a kid, I was given inhalers to deal with my problem. I dutifully took my brown inhaler every day to prevent the symptoms. I took the blue inhaler when I needed instant relief, or when I wanted to look like I needed to stop running in cross country, which, truth be told, was often.

At age 13, I had horrible problems with my periods. They were heavy, full of clots, and often left me completely washed out, a weird white-grey colour and regularly unable to hold my head upright. I went to the doctors. I was given tablets. I tried these tablets. They didn’t work. I tried other tablets. They didn’t work. Eventually I was put on the pill. Every day, I took this little tablet to try to control my periods. I stayed on the pill for about ten years and the problematic periods faded to being pretty manageable. Well, as manageable as periods can be, given that a large portion of the population finds them utterly hellish. But the medication helped.

There was a time when I regularly got migraines so severe that the right hand side of my face would droop. I actually looked a bit like I’d had a stroke. It took a while for these migraines to bugger off, with my symptoms often lasting for four or five days. I saw a neurologist who put me on a preventative tablet. I took this every day to “break the cycle” of the migraines, which were clearly linked to my menstrual cycle (sorry for mentioning periods twice in two paragraphs, but women bleed out of their uteruses around once every twenty eight days and I’m a woman, soooo, buck up Bronco). I was on these tablets for over a year, no questions asked.

So why is it then, when a doctor suggested to me that I went on medication to combat the crippling depression I was experiencing, I resisted? Why did I think that my brain not working quite as I would have liked it to, was any different to my lungs not working quite as I’d like them to? Whilst not quite as useful an excuse to skive out of PE (perhaps that’s a discussion for another time?), it was still a problem for me. By this point my depression had begun pervading my life in a noticeable way. If it had once been a cloud lingering over my shoulder, it was now a surrounding fog that refused to budge. I was struggling to make even the simplest of decisions on a daily basis. If I managed to drag myself out of bed, get dressed and leave the house, the question of which shoes to wear for a day in the office often left me crippled on the doorstep. Deciding what to have for lunch became such an ordeal it was all too easy to skip lunches. I had begun to feel completely numb and consistently felt as though something awful were about to happen. I lived in a state of anticipating impending doom, a disgusting and suffocating case of “low mood” and a paralysing anxiety. But still, I felt that taking a tablet to help was a foolish step. I think part of me saw it as an admission of weakness, of defeat. I felt like I should be able to handle everything the rest of the world was handling. When a GP pointed out to me that if I was a diabetic, I wouldn’t turn down insulin, I realised that perhaps I had been affected by external perspectives on what taking antidepressants means.

It’s interesting isn’t it? Because more and more people are talking about their mental health on the regular these days. Thanks to the internet, the conversation has opened up and continues to do so exponentially. As a result, the stigma surrounding discussions of a sensitive nature seems to be fading. But from where I’m sitting, this stigma has relocated. Most people no longer judge others quite so harshly for having issues with their mental health (I’m not arguing that this has completely gone – we’ve a long way to go on that score) but society is distinctly less forgiving of those who take antidepressants, God forbid they should need to do so over a long period of time.

I’m writing this in 2018, but sensationalist headlines like “A Nation Hooked on Happy Pills” are still splashed across the front page of one of the biggest selling newspapers in the country, while previously disgraced journalist Johann Hari has just released a book which begins by throwing doubt on the efficacy of antidepressants. While I’ve no doubt that Hari genuinely believes the claims in his book it’s my firm belief that claims such as these are seriously damaging to huge numbers of people. I wish my antidepressants were happy pills that made me as perpetually jolly as the characteristically named Green Giant but they aren’t. They help me to be functional some of the time rather than just a shell of a person all of the time. They don’t stop me from arriving at The Dark Place, but they do usually mean my stays there aren’t as long-lasting or as terrifying. They mean I can usually find my way out of that shit hole. They’re the map that means I still have to find my own way, but they are also a light in the dark that helps me figure out what I need to do to escape.

I know that medication doesn’t work for everyone, but I also know what a massive difference a small dose of a tablet makes to my life – and the lives of people I love and care about – on a daily basis. As a result, I’m able to recognise the impact of the kind of blasé statement that lambasts people for taking potentially lifesaving drugs. There will be people who read things like this and think they’re doing something wrong when they take their little tablet every night after they’ve brushed their teeth. Even though I absolutely believe that taking drugs like this is right for me, there are times when reading a scathing headline or a review of a book which suggests “everything I know about depression is wrong” will make my resolution falter. If I am in a bad way, I can doubt my decision to take 30mg of Citalopram every single day. I wonder if I’m making a terrible mistake and come dangerously close to convincing myself to come off them. And I am resolute in my belief that this medication makes my life better. So what about those people for whom medication feels like accepting failure? Or those whose lives are being saved by medication but they feel shamed because they need support from a tablet. This rhetoric puts people like this at genuine risk.

There’s a reason the National Union of Journalists bans this kind of colloquialism in reporting – because it is dangerous. Would you ever see a headline that says “A Nation Hooked on Chemotherapy”? No, you would not. Come to think of it, ever seen a colloquialism for chemotherapy used in the press? No. Because people who have chemotherapy are not demonised by the rags who run these types of headlines about mental health problems.

Next part of the chapter coming later this week! If you’ve already pledged to the book via Kickstarter and you don’t like this chapter…well…it’s kinda tough I guess. NO REFUNDS.

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.