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.

Feel Good 100 with Feel Good Drinks

A lot of pretty cool things have happened to me since I got diagnosed with breast cancer in July 2015. I mean, chemotherapy was a riot and having a mastectomy and the followup surgeries was my favourite thing, obviously, but those things aside, I’ve been lucky enough to get some awesome opportunities. From having my name featured on a Formula 1 Car, to walking in the Breast Cancer Care fashion show,  joining an army of incredible women and regularly strapping on an enormous boob as one of CoppaFeel!’s Boobettes, to taking the jump and going freelance, pursuing my dreams of writing something that matters (though this may be temporarily on hold), I’ve been so very, very lucky. I’m grateful for all of these opportunities. The last two years haven’t been easy, but they’ve been pretty entertaining on the whole.

And I’ve started saying yes to things I never would have said yes to before. I think I’ve talked about this before, but I just don’t see the point in letting my nerves or fear or apprehension or anxiety stopping me from doing things. I’m pretty lucky to still be here, so why should I neglect opportunities that come my way? There’s a lot of things I can’t do right now (like surf) so why wouldn’t I say yes to things I can do? Even if they rip me out of my comfort zone and plonk me down next a beautiful lake in Malaga, completely naked and surrounded by 99 other naked women, all about to skinny dip in the aforementioned lake, I feel like I have a duty to do them. A duty to say yes. To myself as much as anyone.

Oh yeah. That lake thing actually happened. That wasn’t just some wild stream of whimsy consciousness I went off on there. A few weeks ago, along with some of my other awesome Boobette Babes and a bunch of other women from all over the UK, Feel Good Drinks escorted us out to Spain for their Feel Good 100 project. Their idea? To promote their 100% natural drinks they wanted to get 100 women in a 100% natural environment in 100% their natural state.

So here we were. Women of all shapes and sizes. A handful of breast cancer survivors. Models. Bloggers. Mothers. Every single person with a story that had led them to say yes to this opportunity.

So there I was. In beautiful sunshine in a stunning location with an incredible group of women wandering around with my The Artist Formerly Known as Breast out for everyone to see. Bizarrely, I felt more self conscious of the boob I still have than the war wound that marks my experience of breast cancer, but mostly I felt liberated. With all my wobbly bits and all my scars on show, there was something really honest about baring everything. Probably more honest than I had been with or about my body in a very long time.

Today marks two years since I had my mastectomy. Since the start of my treatment, I suppose. The start of my “triathalon”. In terms of surgery, it’s kind of turned into the Marathon des Sables, with 7 surgeries down and (hopefully) only two more to go. But at the end of this month I’ll go back to having two boobs as my (hopefully) penultimate surgery sees me have an expander implant put under the fat they’ve gathered from my legs and stomach in the past couple of surgeries. It looks like this is gonna be a big ‘un. Another scar. Drains. More liposuction. More bruising. More exhaustion. But I’m here, eh? I’m alive and kicking. Who cares if it works out that on average, I’ve had a surgery every three months for the last two years (I do a little bit. But only a touch).

The timing was really right for me with this campaign. I’m constantly searching for ways to feel alive at the moment and I really did feel alive and grateful for this opportunity. It kind of marked a transition in my treatment as I come to the end of living flat, 22 months after I had my implant removed. It’s the start of the end of my cycle of surgeries (hopefully) and I loved being able to celebrate my body honestly – for what it was before cancer, what it is now and what it will become. I still have so much growing and healing and learning to do.

feel good drinks

You can see the video created by Feel Good Drinks here – and I’d also recommend getting your hands on their infusions range. Genuinely delicious.

When I get that feeling, I want holistic healing

A couple of months ago now, someone reached out to me on social media after I admitted that I’d been struggling a lot with life after cancer. Her name was Sophie and she had been diagnosed with blood cancer – Hodgkins Lymphoma to be exact – when she was 23. She thanked me for being so open about the fact this shit is hard. Sophie and I met for a couple of hours, before she headed off to meetings and I headed back to work, feeling a little like I might have met a kindred soul. She’d treated me to a glass of elderflower cordial, we’d hunted out some of Denmark Hill’s prettiest flowers and she’d admitted to me that she too found life after cancer tricky.

Fast forward to last weekend, when Sophie created something truly wonderful for those living with and after cancer – Trew Fields.  A holistic wellness festival that focused on looking after your body and cancer awareness. There were an abundance of fascinating speakers, incredible workshops, great music and comedy that led to a day of open conversation about life beyond a cancer diagnosis.

For me, it was a real shift in my thinking about cancer and the impact it has had on my life. I have been scared and depressed (in the truest sense of the word) and angry and sad and exhausted a lot over the last few months. As I approached two years since my diagnosis, I had hoped that I would be so far away from cancer that I would barely have noticed the day, but the 7th July hung over me like a sickening black cloud. A reminder of the terrible things that had happened to me, but one that was not without it’s silver linings. I felt furious that I’m still so tired all the damn time. That even after seven surgeries in the last two years, I’m facing my eighth in the next couple of months and I’m still living with some kind of deformed attempt at a breast (nb – this is a work in progress and by NO MEANS a reflection of the work my surgical team are doing. I love them and they can do no wrong, so please don’t ever take my criticisms of the multiple surgeries I’ve had and the process of reconstruction as a criticism of them. I couldn’t be more grateful for my team). I find new lumps in my breast on a regular basis that I have to get checked and every time I do my stomach lurches up to the back of my throat, leaving me breathless and exhausted once again by the fact cancer has had this long term impact on my life.

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But at Trew Fields, something really changed for me. I got some real holistic healing for my heart and my soul and my body – every part of me that needed some love and care. I listened to Boob Queen Kris (founder of CoppaFeel!) talk about her experience of secondary breast cancer IRL for the first time with candour and humour and realism and I witnessed one of the most powerful stories of cancer I’ve heard as the inimitable Sophie Sabbage took to the stage to talk about how you can win, even if you lose when it comes to cancer. About finding the gifts it offers you (and there are many) and realising what it’s trying to tell you. I know that sounds a bit bonkers but listening to Sophie, who is living with a terminal cancer diagnosis, I realised that there is a lot cancer was trying to tell me. I haven’t figured out exactly what yet. I don’t know if I will figure it out any time soon. But figuring out that it was trying to tell me something was a start.

And jeez. Can we talk about Sophie Trew too? She created something incredible – special and unique that can be rolled out and grow with ease. She opened up a conversation about some of the more holistic approaches to cancer care that don’t necessarily get the attention they deserve, but for me the most important thing was the advocation of the fact that cancer care should be a partnership between patient and medical team. I’ve been so lucky that throughout my treatment I played a key part in making decisions. I decided I wanted a mastectomy. I decided I wanted my mastectomy before I had chemotherapy so I only had to undergo six sessions instead of eight. I decided that I wanted to preserve my fertility. I decided that I wanted to have radiotherapy. Everything was presented to me as a choice – a choice with a recommended option (maybe there’s some kind of psychology in here somewhere) but a choice nevertheless. Every time I see my surgeon it is a conversation. I ask questions. Sometimes they’re hard questions that make him take pause. But this has led to a mutual respect between us that means we both feel confident I am getting absolutely the best care possible.

I’ve opened my life up to a lot of things since cancer and while some of the more alternative approaches aren’t for me (but I can see their merits for others) – I really do believe in a holistic approach to healing. And after cancer we need time to heal not only our bodies but our hearts and souls and brains as well. And we need to figure out a better way of doing that than stumbling around through life angry and sad and scared after the cancer bomb has been dropped. Sophie Trew has begun to create a place for that healing. And I’m so grateful that she has done so.

In Search of a Bikini Body

I have never been one to strive for a bikini body. I’m very much from the school of thought that if you have a bikini and a body, you’ve got a bikini body as soon as you put the swimwear on. All of the rhetoric around dieting for summer so that you look your best has become outdated and passe, a mediocre and lazy attempt to target women through advertising and taking advantage of their insecurities. Every time a company tries to pull a new campaign out along these lines, society flocks to social media to call bullshit. I absolutely love it.  I love that we’re living in a world where we’re calling out beauty standards for what they often are – edited, airbrushed, unattainable and just not real life.

But I’ve been thinking about bikinis and bodies a lot lately. As most millennials are (because Whatsapp has revolutionised our lives), I’m in a group chat with a couple of friends, girls I used to work with. Earlier this week one of them dropped the interesting fact that bikinis were in fact named after the atomic bomb test site Bikini Atoll because, like the atomic bomb, it was ‘small and devastating’.⁠⁠⁠⁠ During my trip to Lanzarote in May, I spent quite a bit of time thinking about how my relationship with a bikini has changed a lot since I lost my boob in 2015. Weirdly, I think being in Sri Lanka and the Maldives with my uniboob and not a prosthetic in sight, made me more comfortable than I’d ever been in a bikini before. And a brief spell in Lanzarote with my folks recently reaffirmed that feeling.

I never anticipated that I’d be having liposuction this year, so that’s given me a whole different perspective on the bikini body too. To those of you who don’t know, I didn’t suddenly decide that I needed to invest in lipo to get super-fly thighs for the summer months, but my surgeon floated lipografting to me as an idea after I said I wasn’t sure if I could face the gruelling process of having a DIEP flap surgery. It’s a snazzy new technique which involves liposuctioning fat from other places on the body and then injecting it into the chest and gradually moulding it into a breast. I KNOW. INSANE RIGHT? Anyway, I’ve now had two rounds of this procedure and find myself moving slowly towards the world of having two boobs again. That’s a weird world. I’ve been this way for about 20 months now. Going back to wearing pretty bras and not worrying about whether I need to throw on a prosthetic is going to be…quite something I think.

I’m getting off topic. Despite the liposuction and occasionally feeling more comfortable in my own body than I used to, I’ve not been getting on well with my body recently. It’s not really all that new. I’ve talked before about my body confidence and about how cancer has impacted that. But the negative feelings have been more heightened than ever, probably as a result of the fashion disasters I’ve been having recently trying to find something to wear for a wedding. And it (combined with other things) has left me feeling pretty low. I’ve been cross that I have gained weight recently. Been frustrated that my legs are still bruised, still sore after surgery. I’ve had a lot of shitty conversations with myself about the size of my arms, about the fat on my belly, about the pains in my chest. I’ve been really shitty to myself. Really shitty. But one thing I’ve been working on is doing yoga pretty much every day. (I pushed myself too hard the other day & have been getting cramps in my chest as a result so there’s a thing to learn about balance too).

One particular day, the yoga mantra I was working on was “I love”. And while saying “I love myself” does NOT sit well with me, I did it anyways. And (unrelated to the mantra, but quite remarkably) for the first time in my life, I was able to do side plank. And hold it. That’s a pretty big deal for me. Not something I could do BC and certainly not something I expected I could do after cancer. During all this time I’ve been beating my body up, it’s been getting stronger. All this time I’ve been berating myself for being out of shape it’s been getting stronger. And I suppose what I’m trying to say is that my body let me down quite dramatically. But I let it down pretty regularly too. I let it down by not giving it the credit it deserves. I let it down by starving it of the things it needs and wants because of some crazy idea of perfection that has been perpetuated by the patriarchy and the media.

My body doesn’t deserve to be berated. It deserves to be celebrated. And so does yours. For whatever victories it has given you. So find a victory that your body has given you recently. Today. Yesterday. This month. Last. And celebrate it. Really celebrate it. We can’t keep negative thoughts at bay forever, but we can kick ’em in the goolies once in a while. Do that today. I’m celebrating my side plank in yoga. I’m celebrating my body, wobbly bits and all for swimming through the Durdle Door (BUCKET LIST – CHECK). I’m celebrating my body for getting me through cancer treatment and for healing from every. single. surgery I’ve had over the last two years.

And if you’re looking for a bikini body, stop looking. If you’ve been eyeing up that bikini on ASOS but haven’t bought it because you’re worried about your size or your thighs, or your tummy. Stop procrastinating. Buy it. Put it on. Feel fabulous. Because you already are. The world knows it. You just need to tell yourself.

Magical Folk at Muggle Festival

If there’s one event of the year when wizards might be inclined to leave their magical kingdom in favour of the muggle world, I reckon it’s Glastonbury Festival. There may not be a drop of butter beer in sight and the magic they’re used to might not be permitted under the Official Magical Secrets Act, but there will guaranteed be magic in abundance – from an electric atmosphere as headliners take to stages across the farm, or Dave Grohl dedicating Everlong to our girl Laura, to stumbling through the South Eastern Corner and discovering the Shangri-La for the first time. Muggles and wizards alike are guaranteed to be blown away by the multiplicity of wonders of Glastonbury festival, but where would we have found our favourite wizards if they’d apparated onto Worthy Farm this weekend? We have a couple of thoughts…

Harry – John Peel Tent

Forever trying to fit in with the cool kids, Harry Potter will have spent most of his time at Glastonbury Festival by the John Peel Tent. He didn’t know any of the music, but was bopping along awkwardly and acting like he knew who Dizzee Rascal was all along.

Hermione – Left Field

Despite no longer living in the muggle world, Hermione watched the 2017 Election with a great deal of interest, so you’ll definitely find her watching Jeremy Corbyn as he welcomes Run the Jewels onto the Pyramid stage on Saturday afternoon, but primarily she’ll be knocking around the Left Field stage to hear the political discourse going on there. She also probably ventured to the Free University of Glastonbury too to hear talks on evolution and hear author Amy Liptrott discuss her much praised book The Outrun.

Ron – Silent Disco

Ron Weasley Glastonbury Silent Disco
Having never encountered headphones in the wizarding world, you can guarantee Ron Weasley spent the vast majority of his time in the Silent Disco next to the Park Stage. Completely confounded by wireless cans you rest on your head which then proceed to play music, he’d relish the experience of taking his headphones off and listening to a hundred people singing about “living on a prayer” and sounding distinctly like Moaning Myrtle.

Luna – Green Futures


It sounds obvious, but Luna Lovegood would definitely find her kinfolk in the Green Futures area of the festival. From visiting half naked healers to trying the muggle activity of bending yourself into the shape of a pretzel known as “yoga”,  and becoming fascinated by a fellow festival goer who looks distinctly like they’ve got wrackspurts (invisible creatures which float into a person’s ears, making their brain become unfocused) but who blames something known as  “the booze”, Luna would happily wander around the hippy area of the festival for pretty much the entire weekend.

Voldemort – Arcadia


Drawn by the fiery drama of the late night Arcadia stage, I’d expect to have found Voldemort and his henchmen hanging out under the 50 tonne spider if he were still alive. He’d love the bassy beats and feeling the warmth of flames on his face as they blast from the metalwork arachnid during the nightly landing show.

Neville – Anywhere and Everywhere


If there’s one person who is going to accidentally stumble on something extra special at Glasto,  it’s definitely Neville Longbottom. He’s most likely to get lost and find himself down the rabbit hole without knowing how he ended up there, or how to get back once he left. He’d be the one who discovers all the secret shows but having spent his entire life in the wizarding world, he won’t notice when he finds himself in an exclusive Arcade Fire gig or finds Guy Garvey on Williams Green. Neville is likely to get the most authentic festival experience has he wanders with no real aim or agenda and there’s a strong chance he’ll end up looking as dishevelled as he did after the Battle of Hogwarts.

Dumbledore – Stone Circle

Much like the Dalai Lama before him, if Dumbledore were still alive and kicking (and oh how I wish he were), he’d have drawn the crowds in at the Stone Circle. He’d have tried to remain as anonymous as possible, but with a beard, wise face and sparkling blue eyes like that, he’s a natural born leader and one that folk can’t ignore. Whether he was sitting in contemplative meditation or enjoying the pungent aromas of the area, he will have been in the midst of all the action, whether he wanted to be or not.

Fred & George – Kids Field

While they probably spent most of their time resisting the urge to show some unsuspecting kids what “real magic” looks like (and this isn’t as creepy as it sounds), as well as sneaking in to watch muggle magician Dynamo (they swear they know all his secrets), Fred and George Weasley will be most at home entertaining little ‘uns in the Kids Field. While they can’t perform magic in front of Muggles, they brought plenty of Weasley’s Wizarding Wheezes along to the festival and will have drawn quite a crowd with their Peruvian Instant Darkness Powder and extendable ears.

Malfoy

True to his character, Malfoy will likely have been skulking around the South East corner, probably hanging out mostly near the Hell stage. On occasion he might have ventured a little further afield to find himself in Block 9, or heaven forbid, amongst all of the muggles hanging out at the Pyramid Stage. Mostly though, he’ll have tried to stay away from as many filthy mudbloods as possible so he probably spent all of his time sitting sulkily by his tent with no-one other than Crabbe and Goyle for company.

So you’ve just been diagnosed with breast cancer…

First off, hi. Hello. Welcome to this pretty shitty club. I’d say we’re glad to have you here, but we aren’t. I wish you didn’t have to be here. I wish you could have carried on living in a WC (without cancer) world. But sadly that’s not to be the case. It’s shit that you’re here, but I also want to tell you that it’s going to be OK. Treatment is going to be hard and you’re going to cry and shout and laugh and cry again and you’ll find brightness in the places you’ve never expected to find it. It is a pretty crap club to be in, the “I’ve had breast cancer” club. But by the same token, you’ll find some pretty special people on your, X-Factor word, journey through and beyond breast cancer.

It’s almost two years since I heard the words that changed the path of the following 18 months and are still having an impact on my every day life. Almost two years since the kindly man with the big bow tie (who in my mind has morphed into Trevor Macdonald, because I haven’t seen him in a while) told me that it was cancer growing in my right breast. I’m becoming a bit further removed from Cancerland every day, though truth be told, you never really get that far away. If I’m being honest, looking back on those days is a bit like looking through a steamed up mirror. I can see myself behind the condensation but it’s in a bit of a haze, like another world. My outline is the same but I can’t make out the features of my face or that life anymore. But I remember how scared I was. How overwhelmed I was. How anxious I was. How I morphed into survival mode – wanting to know what was to be done and wanting to get the hell on with it. And if I can help one person deal with the road ahead of them after hearing those perspective shifting words, I want to do it. So here’s a few things you might be interested to know if you’ve just been diagnosed with breast cancer.

  1. It will feel like a bad dream for a while. Definitely the first few days. Certainly the first few months. Even now I feel like cancer was a weird thing that maybe happened to someone else in my body. I remember waking up at my parents the day after I was diagnosed, and thinking that I must have made the whole thing up. I felt like a liar. Had my husband not been sat alongside me when the news was delivered, I think I would have convinced myself I was lying.
  2. You’re going to feel a lot of things. But it’s important to say you might not feel them straight away. You also might not feel the things you expect. I did not cry the day I got diagnosed. I did not shout or scream or anything. I made jokes in the surgeon’s office. When the breast care nurse told me “I think it’s OK to cry”, I laughed. I cried the next day for about two minutes. And the day after that, I cried for a little longer. Then I didn’t really feel anything for a while. I never got angry about the fact I had cancer. I never asked “why me?”, but if you do, that’s OK, you know? Don’t ever beat yourself up for having emotions about cancer and what is doing to your life.
  3. Things will move quicker than you can imagine. If you’re in the UK, once you’ve been diagnosed, you have to begin treatment within one month (or you did at the time of writing). Within three weeks of getting diagnosed, I had seen my surgeon and decided I was going to have a mastectomy, and had my surgery. Know that even when things are moving at lightening speed, you can still ask questions. You can slow things down, even just a little. If there’s anything you’re unsure about, ask. Your team are there to help you make sense of what’s happening. Remember that breast care nurses (BCN’s) are angels sent from heaven* to guide you through the tumultuous months of your treatment. They’re there if you have questions, there if you feel alarmingly unwell, there for guidance, there if you have some kind of surgery related crisis. They’re just there. Use them. You’ll need the support
  4. Surgery is not as terrifying as you might expect. I had never been under a general anaesthetic when I had my mastectomy. Practically a pro now, mind, but I have never been as scared as I was in my life before that first surgery. I cried as the anaesthatist put my cannular in. But within seconds of them administering the drugs (and wow are they good drugs, yo!) I was asleep and then I was awake in what felt like another few seconds, and it was all over. Your surgeons are experts. Trust in them. They’ve done these surgeries a million times. They’re on your side. Don’t forget that.
  5. If you have to have chemo and you’re anything like me, you’ll find that it is one of the hardest things you have ever had to do. I cried the night before every chemo without fail – horrible snotty sobs. But as with most things, bad things pass. Chemo is a long old slog, but when you get to the other side of it, you won’t believe how quickly it was over. This too shall pass will probably become your mantra, for nausea, for the inability to have regular poo, for fatigue, for fear, for losing hope, for the waves of sadness, for neutropenia, for delayed chemos. For everything. No matter how hard things get, you’ve got a really good track record for surviving bad days. This too will pass. Say it with me – “this too will pass”. I wrote some tips for surviving chemo if you want to check them out.
  6. Radiotherapy is tiresome and you’ll still need propping up. Radiotherapy for breast cancer is the lesser-talked-about sibling of chemotherapy. It’s not as brutal, has fewer side effects and is usually over in about a 6th of the time it takes for chemo to end. Sessions can be anything from 3-6 weeks (I believe – I had 3 weeks) so it’s not as long a haul, but going to hospital every day to get blasted by radioactive waves is pretty dull. Be sure to listen to your team and MOISTURISE your skin LOTS to protect it. Get right on into the armpit there too. And don’t be afraid to ask for help if you need it (not with moisturising, I mean in general). Radiotherapy is hard too. Don’t feel guilty for still needing a hand here and there.
  7. You’ll laugh at things you never thought you’d laugh at. You’ll find brightness in the times you thought you’d never see daylight again. When you feel at your absolute worst and you think you can’t feel any more ill, you’ll start to feel better. You’ll feel like your losing your mind sometimes. You’ll feel like you’ve got it all in hand sometimes. Sometimes you will lose your mind a little bit. Sometimes you really will have everything under control. You’ll gather a lot of stories that you think are hilarious and then you’ll tell them to a bunch of people expecting to get a laugh and no-one will know where to put themselves. That’s OK. You’ve got to laugh to survive. Oh and losing your hair? Horrible. Really horrible, no bones about it. But losing your lady garden and not having to shave your legs for months is a surprising bonus. And having hair again when it grows back is one of the best feelings in the world.

There’s so much other stuff I want to tell you. So many other things I want to say but I know how overwhelmed you’re feeling right now and I don’t think it’s fair for me to add to it. Whatever you take from this blog post, know this – it’s OK. It’s OK to not be OK. It’s OK to be fine. Cancer treatment is hard, but you know what? It’s OK. And sometimes it’s not. That’s OK too.

* Not guaranteed. But they may as well be.

It’s Not That Easy, Being Human

HI. This is a long read. It’s a bit bleak at times. So maybe don’t read it if you’re feeling close to an edge. If you are, reach out and get help. Mind, The Samaritans, your GP. They all want to hear from you if you’re struggling. And I am sending you so, so much love, and telling you that you are worth it. You are worth fighting for, and it doesn’t matter if your blues are as big as Goliath, you are David and you are stronger than you think. OK? Cool.

It has been a pretty rough couple of weeks, if I’m being brutally honest. And I will be honest and say that when it comes to talking about my feelings explicitly, I’m rarely honest. With myself. With my friends, my family, even my (amazing, god love the NHS, AGAIN) therapist. I joke and laugh and pretend everything is OK when really, I’m actually struggling. A lot. My brain takes me to some very dark places sometimes. It also takes me to some really fricking awesome places sometimes too, to give it it’s due. Yesterday I imagined what it would be like if my train reached a certain velocity and took off, like an aeroplane – but that’s a blog for another time. I have the most vivid imagination and it’s often useful. It’s a huge part of who I am. I read a quote that said “the best use of imagination is creativity, the worst is anxiety.” Too true yo. I’ve been under a bit of a cloud over the last 10 days. Truth be told, I went about 700 rounds in the ring with The Blues and it KICKED.MY.ASS. I am just about stepping out into the sunlight now, blinking, recoiling a bit and trying to figure out how to cope when (and I know it’s a when, not an if) I slip back there again. The sunshine feels nice on my face, as it flickers across my skin and reflects off the tips of my eyelashes but I feel very aware that it is temporary.

The last couple of weeks have been some of the hardest I’ve had for a while. This time though, these tough weeks haven’t come  because my body is fighting against me, but because my brain and I have been in a constant and unrelenting battle of the wills. A battle that, more often than not, my mind has won.

The thing is, I don’t even know where it began. Can’t put my finger on what has caused me to plummet into the darkest orifices of my brain and linger there for longer than I should. I’ve been back in CBT for a while now and feel like I’ve been making solid progress. I’ve been learning about ACT (acceptance and commitment therapy) and have felt like I was really moving forward. I’ve been working so very hard on being as compassionate to myself as I am to others. My incredible counsellor and I had a massive breakthrough, which left us both sat, staring at each other, wondering how we had missed this. We figured out the formula for who I am, who my depression is and how that impacts my every day. I left my last session almost two weeks ago feeling lighter than I had for a long time – with some kind of an explanation for why I feel how I feel in every segment of my life. If you cut me down the middle, you’d see the person I am and this written right through my insides. But not long after this revelation, the fog began creeping in. I could feel it coming, sensed the air change and felt the hairs on the back of my neck begin tingling. My spider senses were letting me know something was on the way to me.

Then it hit, like a tidal wave of negative thoughts, unreasonable self talk, inexplicable expectations and crippling doubt. Thoughts that I can’t write, that I’m a fool for even thinking that I can make a career out of this, that I’m slipping, constantly slipping, never moving forward from cancer, incapable of living a life worthy of being a survivor, that I’m not worthy of being happy, that I am useless because I am not making a difference in my life, that I will never get a grip on the darkness that pervades all of my life, even when it’s sitting on the peripheries.

I’ve come to learn that my depression is not a phase. It is not a season of my life. While the clouds will roll in, the sun will peek out from the darkness. Hell, I will even experience the most beautiful summer days sometimes, for long, long, long periods of time, but the clouds will always return at some point, and part of my journey to figure this shit out is that I’ve gotta accept that. Both my counsellor and I have acknowledged that these feelings will not be permanent, but they are not short term. I will learn, am learning that this is part of my makeup, part of what makes me who I am.

I had a realisation though, when my depression meant I felt nothing – nothing at all – at a bout of amazing news that even though this is part of who I am, it doesn’t have to rule my life. It doesn’t have to dominate. I am striving to do more to protect my mental health. I’m working on putting in place soothing strategies that I can use to protect myself when my mind turns against me. Because even though this is who I am, it does not define me. And I will not let it take joy from me. It might borrow (more like TWOC) my joy. But I will always get it back.

SO THERE DEPRESSION, TAKE THAT YOU POO BRAIN. I’ll be ready for the next round when you come a knockin’.

Today I’m feeling much better. Today my mind and I are friends again. Today I carry lightness and brightness, not emptiness and the dark.

Quick note: Can’t recommend Mind Over Marathon on the BBC enough, especially if you want to learn more about the way other people’s brains work if it’s not something you’ve experienced. I also wholeheartedly recommend listening to Through The Roses by Future Islands, responsible for the title of this blog, and a reminder that we, that’s you, me and everyone, can pull through together. Talking is key. Conversation is essential.

On This Day. And This One. And This One

When I was a kid and we first got the Internet at home, I was transfixed by looking at the BBC’s On This Day website. This was, of course, in the years before MySpace came into existence and I found myself wasting time choosing apt song lyrics to express the depths of my emotion and deciding which of my friends should be in my top 9, not to mention being distracted by the politics of being a teenage girl. But before all that, when things were a bit simpler, I think On this Day was probably the website I visited most. I used to sit and read about all of the things that happened on specific days in history. What happened on my birthday. What happened on mum’s birthday, on dad’s, on my sisters. What happened on Christmas Day in 1973 or at the turn of the century. We had this enormous book called The Chronicle of the 20th Century which I used to pore over for hours at a time, devouring news articles and headlines from specific days of specific years in history. And it wasn’t even because I was a history buff who was obsessed with history lessons at school. While I found that part of the book and the internet interesting, I was more fixated on the idea of anniversaries than anything else.

It’s interesting, because I wrote about Facebook’s On This Day page for Stylist last summer and talked about how nostalgia like this can be damaging or painful. I stand by that line of thought in a lot of cases, especially relating to ex partners or old friends, or people who are noticeably absent from your life, but I still find anniversaries that aren’t directly related to myself pretty fascinating.

We all have anniversaries or days that we mark, whether they’re personal like birthdays or wedding anniversaries or the anniversary of losing a loved one; or whether they’re more generic days celebrated by everyone – St Patrick’s Day, New Year’s, Armistice. But when something happens – like in my case, you guessed it, you get diagnosed with cancer, you’re given a whole new bunch of anniversaries to celebrate. Scratch that.  I’m pretty sure celebrate is not an appropriate word for all of them, but there are certainly days that you notice more after you’ve heard those words.

The anniversary of the day you’re diagnosed. The day you had your surgery. The day you started chemo. The day you shaved your head. The day you finished chemo. The day you finished treatment. And almost inevitably, cos I am prone to excessive rumination, all of these days stick in my head. I never know if they’re happy days, sad days or a combination of the two. Sometimes I’m not even really thinking about it but I wake up and feel a bit strange and it takes me a couple of hours or a couple of days to notice the date and realise why (I can still blame that on chemo brain, right?). And every time one of these anniversaries comes around, I feel simultaneously like 30 seconds and 30 years have passed since whichever anniversary it is.

Last weekend was one year since I finished active treatment. I can remember every single detail of the morning leading up to my last radiotherapy session. I can remember what I was wearing, I remember sending Chris to find the nurses I’d seen every day for three weeks to give them a box of biscuits – a small token of my gratitude for making one of the weirdest times in my life seem more normal. I remember lying on the table, arms above me in 5th position and thinking about how far I had come in the 10 months since they said I had cancer. I wore red lipstick – the best armour I know – and I tried my hardest not to cry as they blasted me with a final dose of radioactive waves, the last my right breast will ever receive.

I feel like I haven’t come that far since I finished treatment, but in my heart I know I must have. Time moves, whether we want it to or not. Time passes, whether it goes at the speed we think it should or not. Days come and go, and whether we want to or not, there are so many that we’ll associate with people or things that happened. It’s like muscle memory – and even if the mind forgets key dates, the body always seems to remember. I guess it’s just a case of figuring out how we process the dates that snag our consciousness. And knowing that it’s OK to feel ’em, no matter if the feeling is positive or negative, or somewhere in between the two. That’s not just for dates relating to cancer either. It’s for all of the dates that mean something to me. All the dates that mean something to you.

I think I’ll always be obsessed with anniversaries – whether they’re mine or historical ones. I have a lot of dates that stick in my mind and I honestly wonder what I’d know if I didn’t use up valuable space in my memory with this kind of thing. And song lyrics. Reckon I know the equivalent of that whole Chronicle of the 20th Century in song lyrics. It’s also weird that chemo has forced me to forget what I went into the kitchen for (EVERY TIME) but allows me to remember key dates. THANKS BRAIN.

Life and Loss

I got a couple of bits of news this week that shook me up. Neither are my news to tell, so I won’t go into specifics but, as you can probably guess from the title of this blog, they’re both related to loss, and unsurprisingly, cancer. Two people who I know, mostly through my writing on this platform, were both killed by cancer in the last week or so. I can guarantee that these women have left behind enormous voids, holes in the lives of the many people who loved them. I didn’t know either of them well, but they’ve left a hole in my life. I can’t imagine the impact this has had on the people they’ve left behind. Once again I’m reminded of cancer’s cruelty and the volatility of the lives we are all trying to make the best of.

I don’t want to make this about me, because it isn’t. These reflections come as a result of myself and these people being in the same situation – finding ourselves on the receiving end of the words no-one ever wants to hear. The words “it is cancer”. But I know that the longer I live as a person who has had breast cancer, the more people I’ll meet going through the same or similar experiences, and the more people I’ll encounter who don’t make it through. The more often I’ll (and I mean that in a general sense as a person who is part of the cancer community) hear of the deaths of those for whom treatment didn’t work as well as mine seems to have done.

And it’s a reminder. It sounds selfish and I don’t mean it to, but it’s a reminder of how lucky I am to still be here, even when, in the throes of a depressive few weeks which have been dark and deep and suffocating, I find it hard to remember.

I think I’ve talked before about how people who have experienced cancer become a kind of tribe. Regardless of age, gender or whether you’ve had breast or ovarian cancer, lymphoma or Ewing’s sarcoma, we are kind of all in it together and we feel every loss very, very keenly. Late last year when we lost one of our fellow Boobettes, Alex who was just 26, I was devastated. I had never met her, we followed each other on Twitter, but our paths had never crossed in real life. That didn’t matter though. We were both Boobettes. She was one of us. One of our own. Her loss was a brutal reminder of why CoppaFeel! has to exist.

And there’s the fear too that comes with this kind of news. And the guilt. The fear because you can’t guarantee that the same won’t happen to you at some point in the future. The guilt for even thinking about it when you should be thinking about the person who has died rather than thinking about yourself. And the guilt that if you’ve made it through the thing that so cruelly killed them, you should be doing a lot more with your life. You should be doing it for them and every other person who has been killed by this disease that you have somehow escaped, rather than finding yourself sobbing in the shower, again, for the fourth time in a week, because cancer happened to you too.

And then I find myself thinking about the other people I’ve met who have had or are currently living with cancer. I worry for their futures more than my own truth be told, especially those closest to me. But one of the redeeming features of being diagnosed with cancer is the people you meet. Incredible people who have lived through the same sort of experiences as you. And while the risks of losing these people are almost tangible, not surrounding yourself with these people for fear of loss would be foolish. Because they are your tribe. Because you can learn from them. And if it weren’t for cancer you never would have met them.

Regardless of the feelings I have around the cruel news I heard this week, there is one thing that continually strikes me about cancer. Cancer is not avoidable but early detection does save lives. These brilliant women realised something wasn’t right with their bodies and got it checked out. In their cases, the cancer was aggressive and this wasn’t enough, but knowing ourselves and recognising any changes are positive steps towards stamping out late detection of cancer. News like this gives credence (not that we need any more) to the incredible work that CoppaFeel! are doing for breast cancer, and general education around cancer with their #RethinkCancer campaign. The three Boobette talks I’m doing this month will mean more to me than ever before.

So a couple of housekeeping bits before I go, and it’s a while since I’ve asked you this, but I’d really like you to pay your body some serious attention today and if anything doesn’t feel right, go see your doctor. Check your boobs, your balls, if you’re a woman who has had any unexplained bleeding after sex or between periods, call your surgery. If you’ve any lumps and bumps anywhere that you’re not sure about, make an appointment to go and get prodded by your GP. They want to hear from you if you’re worried about something. They really do, I promise.

And lastly if you’re having a glass of wine any time soon, I’d really like you to join me in raising it to Sharon and Margo.

Exposed at New York Fashion Week

I saw something in the news this week that almost made me cry. And while, I’m more inclined to cry when I see the news these days (since Brexit in June and Donald Trump’s inauguration) these near tears weren’t borne out of sheer despair at the state of the world (that’s another blog post), these almost weepies came as a result of something that happened at New York Fashion Week on 14th February.

While I may not look like I know my shit when it comes to fashion, I think it’s pretty fair to say that I do. I’m no expert but I sit at the sidelines of the internet and watch with interest as fashion shows unfold around the world. A few years ago, I was lucky enough to explore backstage and sit on the front row for a couple of shows at London Fashion Week and I was absolutely in my element. I know I’m not exactly a style icon. It’s rare you’ll find me out of my jeans and a baggy tshirt, especially in these uniboob days, but my love of fashion has been formulated by the fact that it was my sister’s first love. So I’ve watched as the shows have rolled out of New York over the last few days. I clocked “hot convict” Jeremy Meeks (aka Stockton’s most famous export) on the runway for Phillip Plein, I swooned at Oscar de la Renta’s utterly dreamy AW17 collection and I noticed the rise in “fashtivism” on and off the runway throughout the week.

I never expected to look to a NYFW catwalk and see myself looking back at me. I’m not disillusioned, despite my recent rendez vous on the catwalk for Breast Cancer Care – I know I am far from model material. I do not see myself in Gigi Hadid or Karlie Kloss. But when a bunch of incredible and awesome breast cancer survivors, over half of whom are living with metastatic breast cancer, took over New York Fashion Week in an alternative lingerie show, I saw myself. I saw my broken and scarred body in these women and saw that it could still be beautiful. I saw their confidence and I saw their passion and determination and I recognised that I carry that with me now too. Not always, and not often as clearly as these guys did on the catwalk, but I do. I think every breast cancer survivor does in one way or another.

I whooped when Ericka Hart stood at the end of the catwalk, holding her power pose. I had to hold back the tears when one of the models who spoke to the BBC said that she felt really powerful because she is “tired of feeling ashamed of having cancer”. I was overwhelmed with pride for these women.

I read a lot about race and gender and representation. I know that as a white, straight, cisgender woman – representation is not an issue for me. While I may not see people like myself on runways in fashion shows, I do see them everywhere else – on the tv, in magazines, on billboards, in newspapers, in movies – but I appreciate how important it is for young girls to see women of colour on their TV’s or in their magazines. I can understand how incredible it must feel for disabled people to recognise something of themselves in advertising campaigns and I had an even better understanding of it when I saw these powerful breast cancer survivors normalising the after effects of a disease which has impacted every.single.part of my life. I know that I have nothing to complain about when it comes to representation. There are far bigger fish that we need to fry on that account. But this show made me feel human again. And it made me feel like a woman again. And it made me feel that I can be sexy again and beautiful again, regardless of the fact I’m missing a breast, a nipple and the vast majority of my self confidence. It made me feel powerful again. For today at least.

Created by AnaOno Intimates, who specialise in mastectomy and post surgery underwear and curated by US designer, and breast cancer survivor, Dana Donofree, the show was a first for NYFW – never before have “real” women stomped their way down the catwalk and I’m pretty sure no women will ever do it in quite the same way again.

Donofree told Reuters: “It is a very important moment for them [the models] to get out there and experience something like this because breast cancer has taken over their bodies.”

And this isn’t just important for the models Dana. This is important for every breast cancer survivor everywhere.

So thank you.

Image taken from AnaOno Intimates blog.