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.

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.

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.

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.

If crispy potatoes are wrong, I don’t wanna be right

I mean. I’m not sure there’s much more to say on this topic other than the headline, but I’m going to expand anyway.

You might have heard the news last week that crispy potatoes, over browned bread and other overcooked starchy foods pose a cancer risk. Add these to the ever growing list of other foods that cause cancer – sugar, red meat, processed meat (THAT MEANS BACON), refined white flour, Nutella and so on and so forth – it looks like we’ll soon be eating spinach leaves and tofu, until it’s decreed that they too, come with a risk of developing malignant tumours. If we’re not feeling guilty for eating a slice of cake because of the impact it will have on our waistlines, we’re stressing about carcinogens, hydrogenated oils and now acrylamide (word of the week) and whether they’ll have a detrimental impact on our lives or make us come out in a tumour.

The thing is – everything has the possibility to be detrimental to one’s health if consumed in excess, but it seems we’re living in a perpetual state of fear when it comes to whether our diet will cause cancer. As a person who is currently living with the very real prospect of getting cancer again at some point in the future, having already had it the once, I do not have the time, energy or inclination to start eradicating things from my diet because there’s a chance (and usually a very flimsy chance) they might cause cancer.

Whatever happened to enjoying good food without being terrified of the possible, minute risk that it might take a year or so off our lives? What ever happened to embracing a balanced diet with a little indulgence here and there? Eating food should be joyful – something to be savoured and appreciated – not something to be feared or berated for. It is a privilege to live in a country where we can savour and appreciate the food we are eating.

There’s so much fear mongering around diet – particularly diet and cancer – that it’s becoming suffocating. I think it’s time we stop listening to absolutely everything we’re being told about eating food and relearn that a little of a good thing probably isn’t all that bad.

As Cancer Research pointed out in a recent blog, it’s too soon to decry slightly browned bread and the crispy roasties you like to have alongside your Sunday roast (I bloody love a roast potato). The scientific findings are patchy at best, but you’d think from the coverage in the media that a single browned spud will immediately take three years off your life. The research into acrylamide (carried out on animals) shows that it has the potential to damage the DNA inside cells, which in turn, links it to cancer. But when researchers looked into the links between acrylamide and cancer in people, actual human people who are made up of the same bits and pieces as you and me, there isn’t a clear and consistent link between this chemical and an increased risk of cancer. The evidence for these latest claims is, what Cancer Research described as “weak and inconsistent”.

Now, I love food. I’ve come a long way from the days when I would only eat yellow rice (true story – the parents ended up adding food colouring to white rice, clever things). I like nothing better than cooking up a delicious feast for my loved ones or hanging out with my friends in a gorgeous restaurant and indulging in a five course tasting menu. I’d MUCH rather eat an amazing meal with CDB than go out and drink away £60 on a boozy night out. But I appreciate the importance of having a balanced diet and I know that there are ample, proven studies that show that having a balanced diet is a sure fire way to reduce your cancer risk.

So I’m not saying that we should all just live on potatoes and white bread because to hell with it. I’m saying we need to realign ourselves with a love of food. We need to look after ourselves, but not to the extent that we’re chopping things out of our diet on the basis of a media outcry that is based in loose facts.

We should be asking questions every time the media reports something like this. I simply cannot accept a ban on roast potatoes without hard evidence. We know that the main things that affect cancer rates are smoking, drinking excessively and being overweight, so how’s about we concentrate on those things, enjoy a little of what we fancy and make an effort to go for a long walk every now and again.

And I know one thing for certain. If eating crispy roast potatoes is wrong, I don’t wanna be right. If they cause cancer, I’ll take the risk. After all, life is for living, not for fearing the future. And I say that as a breast cancer survivor.

Fear

I went ice skating for the first time in a long time recently. I hadn’t hesitated when my friend had asked if I wanted to go to Morning Gloryville’s festive early-morning ice skating rave. Yes. Yes I did want to go along. Yes I absolutely did want to listen to banging tunes as I skated my way around Somerset House with people dressed as unicorns. What better way would there be to spend the last day of November other than with a bunch of other people who thought getting out of bed at an ungodly hour to go ice skating was a good idea? None.

I was excited and, despite having to get out of bed at 7am for the first time in a long time, I’d been looking forward to going for a while. I laced up my boots and shuffled towards the rink entrance. But as I moved towards the ice, I was completely and entirely stricken by fear. I suddenly realised that, since being diagnosed with cancer, I no longer felt invincible. I was no longer as fearless as I had been before I got sick. I was suddenly all too aware of the things my body could and could not do. I was worried about slipping, catching myself on my right side and pulling my mastectomy scars. Paralysed, I looked at my friend and simply said “I don’t think I can”, ready to walk away. I suddenly realised just how fragile I feel these days. And just how far away I am from the person I was before I got sick.

I don’t think I’d ever felt real fear before I got my breast cancer diagnosis. Not the kind of fear that stops you in your tracks and fills you with a sickening feeling from your toes right through to the crown of your head. Not the cliched kind of fear that leaves you trembling. The first time I remember feeling fear like that was the day I went in for my mastectomy, as I waited for the anaesthatist to put me under. What a wonderfully charmed life to have lived though, right? I was never afraid of jumping off a waterfall and into the cold waters of Low Force when I went ghyll scrambling for my #25at25 challenge. I’d never been scared of my body failing me. I wasn’t scared of travelling to Texas on my own, or of throwing myself into open water swimming. Or of setting myself challenges I never knew if I could manage. I’d literally never been scared of ice skating before, despite being the person who ALWAYS falls over and ends up with the most hilarious bruises. But it seems cancer has stopped me from being quite as fearless as I used to be.

And I’m not just talking about getting scared of doing things. I’m actually really scared of my body. I don’t trust it not to let me down again. I’d never had reason to doubt it before, never questioned that it was entirely on my side, but ever since I found that lump in Cornwall all that time ago, I’ve been aware that some parts of what my body does are entirely out of my control. Don’t get me wrong. It’s not that I haven’t always known this fact, it’s just I have had a sickening reminder of that fact pretty much every day since 7th July 2015.

When I was in treatment, my body was not my own, and even though treatment is over now, I still feel like it isn’t mine again yet. And more to the point – I just don’t trust it. Someone asked me recently if I’d forgiven my boobs for trying to kill me yet. I said I wasn’t sure but I guessed not. But now I know the answer. The boob is forgotten, MIA until further notice, but the body is not yet forgiven.

So where do we go from here? How do I get back to being the fearless person I was before my breast tried to kill me? How do I forgive my body for putting me through everything? I guess I focus on the things that I am thankful for. As I bend and stretch a little more every week in yoga. As I reflect on the fact that even though my body betrayed me, I couldn’t have got through the last 18 months without it. It could have given up on me completely in the throes of treatment but it dealt with everything that was thrown at it in it’s stride. So I’m grateful to it for that. And it is this I must focus on as I try to move forward.

I guess you want to know whether I got on the ice or not. I did. I did so with huge trepidation and wouldn’t have managed it without the friend who took me by the arm and told me that I could. I couldn’t have done it if the girls hadn’t eased me round steadily as my confidence grew and consistently checking how I was. I had to put my trust in them that I could do it. That I would do it. And that I’d be OK when I did do it. Even if my body had let me down in any way when I was on the ice, I still would have been OK.

I just had to borrow some fearlessness from my friends. And til I find my own again, that’s OK too.

 

 

Confession Time

I couldn’t decide whether to quote Usher or the Foo Fighters to start this post. But in the words of my beloved Dave Grohl, I’ve got another confession to make.

As open as I have been with you about my experience of breast cancer, I haven’t been entirely honest with you about certain other aspects of my life. I’ve alluded to what I’m about to tell you, but I’ve never actually written it down for the world to see in a way that is quite so frank. I’ve toyed with the idea of writing this post for a very, very long time, even before I got my cancer diagnosis, but I never really found the strength to actually go through with it.

Now I’ve written that paragraph, it feels like I’ve built this whole thing up too much. Because what I’m about to tell you isn’t really that big a deal. It’s a big part of who I am and it’s a part of who I have always been, pre, peri and post cancer. It’s a thing that lots of people know about me, but it’s also something I have tried to keep hidden for a big part of my life. So here we go.

I’M ACTUALLY AN ALIEN. No. That’s a lie. That’s not my “big reveal”. Truth be told chums, I’m standing here with my hands up, my defences down and I’m telling you that, for most of my adult life, I have lived with depression. A depression sometimes so crippling, I can barely put a pair of socks on. A depression so severe that sometimes the whole world looks grey – like every millimetre of colour has been extracted, never to be seen again. A depression so strong that I have, at times in my life, looked in the mirror and genuinely not known the person looking back at me (and I’m not even talking about when I was bald, fat faced and boobless). Sometimes, I am so anxious I can’t even decide what to buy for tea because I’m overwhelmed by fear of what might happen if I pick the wrong thing. I take antidepressants. A little dose of a little tablet, every single day to help me not be swallowed by the black abyss. I have had cognitive behavioural therapy. I have had counselling. I am due to have more cognitive behavioural therapy, ‘cos the work I was doing on that was somewhat derailed by that time I got cancer.

Despite all that, I like to think I’m still a pretty highly functioning individual. That I get shit done and when I’m not in the grip of the shadows, that I have a pretty sunny disposition. It took me a long old time to realise that a) my feelings about the world weren’t necessarily the same as feelings other people experienced and b) that I needed to get some help, before the big dark hole I’d found myself in swallowed me whole. And by Christ am I glad I took help for those things before I got diagnosed with breast cancer at 26. I mean, that’s a bit of a shitter for a person who hasn’t battled with their mental health, let alone someone who has seen the darkest depths of their own brain.

It occurred to me recently that I’ve been so very, very honest about dealing with my breast cancer diagnosis and all of it’s related treatments, it’s ridiculous that I’ve hidden this part of myself away. I’ve openly talked to you guys about VAGINAS for goodness’ sake, but I have been ashamed of the fact that my brain isn’t wired quite right. I’ve been afraid of people judging me and dismissing me as someone who’s just looking for another excuse to bang on about themselves. But the thing is, there are so many people like me. So many people who know all too well the horrible feeling of awakening and feeling sick at the prospect of trying to make your way through another day when you feel like you’re wading through treacle. And so many of us feel ashamed and afraid of talking about these things. And that has to change. So many people are dying because they can’t talk about this illness. I never would have dreamed of keeping the fact I had breast cancer from people I loved. So why do I hide depression? Because of stigma? Well, the only way to change that is to stand up and be counted. So here I am. I am one of the 1 in 4. And I’m going to start talking about it.

ANYWAY. The crux of this post is that I’m working on something I’m really excited about at the moment and I wanted to be up front and honest with all the people who read my blog, so that when I let you know about this new project (hopefully sooner rather than later) you won’t be blindsided by the fact that I’m all too familiar with getting a case of the blues. I’m really hoping that this new project will prove to people that even when living with depression or going through a traumatic health scare, or having to deal with both at once, it’s possible to find light in the darkness, you’ve just got to remember where the light switch is. To paraphrase Dumbledore.

God I wish I was as cool as JK Rowling.

Aftermath

I’ve been trying very hard to concentrate on moving forwards recently. I’ve been distracting myself with work and a wedding and love and all of the great things that have been going on in my life, but sometimes the darkest bits of cancer creep in when I don’t want them to, and it’s a case of no longer being able to escape it.

I’ve been so open about my experience . From writing here on my blog, to writing for Red magazine (out next month – exciting and terrifying), deciding to take part in the Breast Cancer Care fashion show and all of the press that entails, preparing for my first Boobettes talk and taking my top off to be photographed for a national magazine (New!) half naked with the artist formerly known as boob hanging out for all to see. I do all of these things because I think it’s important to raise awareness of the reality of cancer for younger women. I do all of these things because I think it’s important to spread the message. I do all of these things, but sometimes it comes at a bit of a cost.

My mental health has always been volatile and in the aftermath of cancer this hasn’t changed. It has neither got worse, nor improved. I’m perpetually hard on myself for everything in my life. I spend a lot of my days consumed with anxiety and warding off dark thoughts that often pervade my sunny exterior – but often only when I close the front door and find myself at home, in my safe place. And talking about all of these cancer type things, and living in the midst of all of these things is so important for the mental healing I’m working on, but it’s also sometimes completely overwhelming. Yesterday I cried for the first time in a while. I cried because I’d eaten too many chocolate fingers. I cried about cancer, I cried about the fact I only have one breast, I cried out of fear for the future, I cried for all the other people in the world I know and love or have spoken to who are going through cancer treatment or have been through cancer treatment. I cried for all of the women in the world who have developed secondary breast cancer and know that ultimately, the disease I have survived for now, will kill them. I cried out of sheer exhaustion.

Because even on the days when I’m sunny and shiny and positive, I’m constantly fighting being tired. Cancer treatment makes you tired for a long time after it has finished. I’m also constantly fighting a battle in my head. I’m embarrassed that I’m still so tired, even though treatment finished six months ago. I feel like a failure when I see other people who’ve been through treatment or are going through treatment smashing life, doing all of the great things, without being shackled by a need to hit the hay at approx 9pm every night. I think “I should exercise more, I should eat better. I should try not having as much sugar. All of these things would help me”.

Should. That word should, I think, is the curse of our generation. It’s what makes us apply unnecessarily high amounts of pressure to ourselves, meaning who we are is squashed under a weight of expectation that is preventing us from being who we really are.

I’m frustrated that I’m not right and fine and back to normal again. But what even is normal, you know? And the “normal” I was before cancer (actual LOL) is a normal I can never go back to. You can’t go backwards to who you were yesterday without going through cancer, so how on earth do I expect myself to go backwards to who I was before my body tried to kill me? Apparently, in true Alice fashion, I’m expecting too much of myself and I’m being hard on myself when I don’t meet my own expectations. But what’s that about? DUDE. Stop it. You’ve had a pretty tumultuous 18 months. And even if you hadn’t, why are you expecting yourself to be some kind of superhero? In the words of Jessie J, and many before her, it’s ok not to be ok.

I think the pressures we experience as a result of living in the world we live in, make us all guilty of expecting too much of ourselves, and that hasn’t changed for me, just because I have had cancer. It’s not worse, it’s not better. It’s just different. Life in the aftermath of cancer is a whole different kettle of fish but with the same old challenges of life before cancer even crossed my mind.

I’m taking the day today. I’m staying in bed for a while. I’m not going to check my emails. I’m going to try and stay off social media (not in the least because I don’t want to be inadvertently exposed to whoever was kicked off Bakeoff last night). All of the work I have to do today is done. I’m going to recharge and replenish, because that’s what my soul needs.

If that’s what your soul needs, I recommend you do it too.

I want to be fine. I want to be great. I want to have put cancer behind me and moved on. But it doesn’t work that way. I need time. That time might be weeks, months, it might be years. Decades. I just have to accept that’s what I need.

I’m pretty lucky, but if you know someone who has gone or is going through cancer treatment, ask them how they are. Really ask them. Look them square in the face, tell them you’re ready to listen, and get them to talk to you about their feelings. Even if you can’t understand, and I hope you are never able to understand, because understanding comes at a big cost, ask them. It’ll be good for them to talk. Because you can almost guarantee they’re feeling a bit lost, a bit overwhelmed, a bit tired and a bit like they need a hug. But they will almost never ask for it, for fear of feeling like a burden.

Oh. And I got married a few weeks ago. That was nice. This guy is pretty great, you know. I’m thankful for him every single day. But don’t tell him I told you.

Tumour Has It

A letter dropped through our postbox this morning. From the NHS. Addressed to me. I presumed it would be about my impending appointment to pop along and see my surgeon and have my new medical photographs taken (as weird and as funny as it sounds). Alas, it wasn’t an appointment about my boobs this time. It was a letter to tell me it’s time to go and have my cervix checked out.

Women aged 25 to 49 in the UK are invited for cervical screening every three years, but recent information released by Jo’s Cancer Trust have shown that one in three women aren’t attending their regular check ups. Whether is through busy-ness, or fear or apathy, I’m not sure, but one thing I am sure about is that we need to get out of the habit of putting things like this off.

Right now, I can literally think of nothing worse than having a test for cancer and having to wait until the results come back. I’m still pretty traumatised from all of the drama I had when the assisted conception team tried to get my coil out before I started treatment to protect my fertility in case chemo ravaged it completely. I won’t go into details cos it’s a story for another time, but all I will say is they spent about 50 mins trying to get it out, and failed. While I was reminded of the chapter in Eve Ensler’s Vagina Monologues “Because He Liked to Look at It” it was not a pleasant experience for anyone, least of all me.

So yeah. I get that revealing your lady parts to a doctor is not a particularly nice thing to have to do but, and I understand that having a test for cancer can be a bit scary and a bit overwhelming –  but it is imperative. And actually it’s not all that bad. Sounds like a stupid thing to say but the more relaxed you are, the easier it is. It’s a bit uncomfortable but it’s much, much better than the alternative.

According to Jo’s Trust “cervical screening is 80–90% reliable and can prevent 60–80% of cervical cancers. This means that seven out of every 10 cases of women who would have developed cancer of the cervix can be prevented.” Sounds like a pretty useful tool to me. And it’s like always say when I’m talking about checking your boobs, knowledge is power. You owe it to yourself to get checked out, because a healthy cervix is a happy cervix, right?

I recently met a pretty special lady called Karen. Karen and I are both part of an organisation called Trekstock, and we’re both lucky enough to be in the group of people classed as “young adults with cancer”. I know right, what an awesome and elite group to be part of!

Karen was diagnosed with cervical cancer in 2014, aged 25. Since her diagnosis and treatment, she’s dedicated a lot of her time to raise awareness of cervical cancer and gynaecological disease. At the moment, Karen’s doing this through her one-woman comedy show Tumour Has It. As we speak, she’s up in Edinburgh performing this show to the masses at The Fringe. Billed as an “honest and hilarious tory of her cervical cancer extravaganza” told “through comedy, storytelling and a poem to Svetlana the Tumour”.

But Karen wants MORE. And I want MORE for Karen too. She’s determined to keep telling her story to new audiences and has turned to Crowdfunding in an attempt to raise enough money to keep her show going around the country when she gets back from Edinburgh. She needs £££ for venue hire, production costs, marketing and promotional materials (including a badge that says the word “vagina”). Her target is £7000 by 26th August.

Here’s a little to do list of things it’d be great if you could think about doing off the back of this post.

  1. BOOK YOUR SMEAR TEST. ATTEND YOUR SMEAR TEST WHEN CALLED FOR SCREENING
  2. Go and see Karen in Edinburgh if you’re there*
  3. Remember that a healthy cervix is a happy cervix, and help Karen raise awareness of cervical cancer and gynaecological disease with her show by helping her Crowdfunding Campaign. There’s a video all about it right here. Find out more about the show on Facebook.

I saw “No More Stage 3”, a comedy show by Alistair Barrie about his wife’s run in with breast cancer the other week and at the close of the show he said “Always keep laughing. Because if you stop laughing, you stop living, and then the cancer has won”. This is very true and applies as much to Karen’s show as it did to Alistair’s. It’s also just a really good motto for life. You can swap out “cancer” for other words including “depression” “terrorists” “Conservatives” etc.,

I’m off to book my smear appointment right now, fear be damned.

*Another of my friends Katie Brennan is at Edinburgh Fringe as well, performing her show Quarter Life Crisis, so go see that too, yeah? Because I can’t and I’d like to live vicariously through you. K, thanks.