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.

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.

Beauty Tips for Cancer Patients

During my cancer-based travels, I’ve met a lot of people. Doctors, nurses, radiotherapists, other people living with cancer. But none have had as big an impact on me as my Boob Gang girls. There’s three of us in Boob Gang. Kate, Izzy and myself. Kate and I decided to be friends after she found out she had cancer having read my blog (still feel conflicted good and bad about that), and Izzy and I got introduced to each other at the Breast Clinic by our hero breast care nurse. Not only have they been an incredible source of strength, support and humour, but they’re both exceptionally talented, remarkable and intelligent individuals that I feel proud to call my friends.

Now, Izzy has a particular set of skills that I am distinctly lacking. She is an exceptionally gifted makeup artist (you can find her on Instagram and check out her website) and I know how many women struggle with their appearance while going through cancer treatment, so I asked her if she’d be interested in sharing some of her make-up know how right here. She said yes! So here are her top tips (and actually, a lot of them are just handy for life):

Skin

Your skin gets a hard time on during cancer treatment. Chemotherapy targets the fastest growing cells, and can’t distinguish between what’s good and bad, while there’s also a chance you’re getting jabbed with a range of hormones. The many skin side affects of cancer treatment range from pubescent breakouts to skin that feels like sandpaper. Keep your skin moisturised, introduce gentle products to your skin care. Avoid washing your face with water, it can make the skin feel drier and sometimes more sensitive. A creamy cleanser wiped away gently with a soft muslin cloth or cotton wool pad is much kinder to the skin. Jojoba seed oil is an amazing base oil; kind and nourishing for the skin and even gentle enough for acne breakouts. My go to is MV Organic Pure Jojoba.

Brows

On the days you don’t want to feel like you’re channeling Lady Gaga 2016, and would like to see some brow use a soft brow pencil, ideally with a waxy texture, to create the shape and offer more hold. Start from the inner corner (closest to your nose) and slowly stroke the pencil upwards and into the middle of the brow bone, pulling up slightly to create the arch, and then work the pencil along and out towards the ear keeping the outer corner of the brow a little finer, where it should taper off at the end.

You can always fix any mistakes with a cotton bud and makeup remover and I would still brush very gently over the brow shape to soften a little. There’s always the option to use an eyebrow stencil too – just hold the stencil in place and begin filing in with your brow product.

Lips

Neal’s Yard Bee Lovely Lip Balm is amazing for soothing dry cracked lips and there’s no petroleum in sight! After applying, grab whichever of your favourite lipstick, gloss, lip crayon you fancy wearing and slap it on. This is an easy way to spruce up both your appearance and your mood – a little lipstick goes a very long way.

When your lips aren’t feeling sore, a gentle buff with an old toothbrush is a quick and easy way to exfoliate your smackers!

Eyes

You don’t have to fiddle with glue and spider lashes after the final lash that has been clinging on decides to call it a day. To instantly create definition, use an eyeliner to draw along the lash line and into the upper waterline too. Pencil liners and kohl’s give a softer and subtler finish. Pat a little eyeshadow over the top of your liner to lock in the colour and add a bit more lasting power. Add a little more dimension by using a shadow deeper than your skin tone blend it into the socket of the eye.

Before applying anything, use an eye base primer to dramatically improve the longevity and application of shadows and liners.

To help hide dark circles – the sure fire sign of fatigue, pat and blend few dots of concealer under and into the inner corner of your eyes to lift and brighten.

And here’s one she prepared earlier…(sorry – it is my face again)

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Self Confidence in the Face of Cancer

Self confidence is something I’ve often grappled with. Like most people these days, I scroll through Instagram, Facebook, the Internet as a whole and I’m subjected to images of photoshopped bodies, made to look smaller, more taut, more toned. I see adverts every second breath telling me how to get glossier hair, I’m subjected to images that suggest women are little more than a pair of knockers. Or magazine articles that exclaim “Fix your eyebrows, find love!”. These articles, adverts, posts, messages all tell me how I “should” look.

So what do you do then, when you find yourself squidgy round the edges because a gruelling healthcare routine has left you with little time or energy to put on your running shoes? When you no longer have any hair at all, let alone hair that you need to make thicker? Or when one of the parts of your body that defines you as a woman is taken away from you? When you haven’t a single eyebrow hair to speak of, when you couldn’t make your brows “on fleek” if you tried. How do you find self confidence if you don’t even recognise the face, the body, looking back at you in the mirror? When you’re as far away from how you “should” look, as you possibly can be?

Self confidence is a funny old thing and often in the UK it gets confused with arrogance, much like it’s close sibling, self belief. People would far rather pick at things they don’t like than look at the things they do like. So next time you’re brushing your teeth or your hair, or figuring out if you really can wear that skirt with that top (by my rules, you deffos can, I know I can’t see, but you can), I’d like you to do something for me. Look at yourself. Really look at yourself and find one thing you love about your face. Maybe you’ve got beautiful eyes, maybe you’ve got really full lips, maybe your cute button nose is a real family trait. Perhaps you can look at your body and be proud of the strength you see in your biceps or calves or maybe you’ve got stretch marks that prove you’re a mummy and you love them because they show you carried another human for 9 months. These things are what make you, you. They tell your story. They don’t have to be perfect. But if you can come to terms with them now, it won’t matter what’s thrown at you in the future.

I stepped out in a swimming costume the other day for the first time in 7 months. Chemo and surgery had both played a part in stopping me from doing one of my favourite things. I didn’t wear a hat and I dont yet have a prosthetic designed for swimming. I was terrified, worried about what people would think of me if they noticed how lopsided my boobs were. Scared that people would judge me and my bald head and my tired eyes. I was nervous I wouldn’t be able to swim fast or for long any more. All of these things came down to my self confidence. And there were two things my friends said to me that gave me pause, and helped me park my insecurities. “No one will notice what you look like because they’ll all be too worried about what they look like” and “you may be being treated for cancer, but you’re still a swimmer. That hasn’t changed”.

And when I got in the pool, it didn’t matter. I did get some weird looks, but I get weird looks when I’m not bald. And I reminded myself that it’s OK to look like a cancer patient. Because that’s what I am at the moment. It’s not all I am, but it’s a big part right now. And that’s OK.

For my whole life, I’ve been conflicted by wanting to avoid having my photograph taken, but being desperate to take – and be involved in – a shot to preserve a memory (I made a hilarious typo when I wrote that sentence first time – see if you can guess what it was). And I’ve spent a lot of time avoiding mirrors too. So why then did I appeal for someone to take professional photos of myself when I looked less like myself than I ever could have envisaged? Because cancer has changed my approach to self confidence in one way or another.

That’s not to say I’m any more confident than I was BC (before cancer) but I guess the goalposts have moved or the parameters have changed. Whichever cliche you want to adopt. I have a list of things I won’t moan about when I don’t have cancer and some of the more superficial of them include “bad hair days” or “looking like shit”. If I’ve got hair, eyelashes, eyebrows and skin that doesn’t look like tracing paper, I’m a step ahead of cancer me. And I wanted to remember the strength I’ve found during my cancer treatment. To celebrate the me that’s finally become brave enough to be out without a hat on and be comfortable with it. So here’s a couple of the photos I had taken the other week. So I can look at them in the future and remember this version of self confidence when I can’t find another. If I hadn’t been diagnosed with breast cancer, there is no way I would have bared my chemo face and my scarred body to a stranger (who I now hope is a friend). I hope these photos, especially the ones of my mastectomy scar offer some strength to other breast cancer sufferers. I bloody salute you all.

Photos by the INIMITABLE Georgia Devey Smith. Mega thanks to Georgia for taking these photos – I’m sure you’ll agree she is exceptionally talented and I feel very privileged to have been photographed to her. Thanks also to my homegirl Isobel Kennedy for doing my makeup – but more on that next time (with more photos of my mug. SOZ)

Running Up That Hill

As you guys have heard many a time before, I am not a particularly big fan of the old health and fitness scenario. I like a good dance (with or without cocktails), I bloody love to swim (you’ve probably heard that a million times right?), but occasionally I pull on a pair of running shoes and drag my backside out for a shuffle around the block. I’ve said it once, I’ll say it again. I am no athlete and I don’t hugely enjoy running, but I do it because I know it’s good for me. And it means I don’t need to feel too guilty about eating all of the cheese. Or chocolate.

Last year, I took on my first 10km. I trained relatively hard, taking on Sydenham Hill once or twice a week and dragging my backside out for shuffles that began to look increasingly like jogs, nay, perhaps even those illusive “runs”. I finished the 10km in 1 hour 7 and I was pretty bloody pleased with myself.

Cancer changed things a bit. I went from running reasonably far at a fairly reasonable pace to being forced to retire my running shoes while my breast healed (or rather, attempted to heal) post mastectomy and all of the follow up surgeries. I found myself counting down the days to when I could get back to running, but then when I did, chemo meant I was worse at running than the early days. I tired easily and I was absolutely furious with cancer for ruining all the hard work I’d done. It was a bloody battle, and one that ended quite a few times with me sobbing in the park, aching, cold and pissed off. With life, with cancer, with my body, with myself for crying in public. Again.

But not long after I got diagnosed, I’d signed up for the Cancer Research Winter Run 10km again on a whim. You know, one of those, stubborn WELL CANCER ISN’T GOING TO RULE MY LIFE whims. One of them OH HEY CANCER, YOU CAN’T STOP ME whims that I came to regret when race day rolled round two days after my last chemo. Great timing, eh? It was suggested I give it a miss, but those whims and my pure bloody mindedness meant there was no way I wasn’t crossing that start line. I would have crawled there if I’d had to. And I’d have crawled the whole 10km if I needed to.

And I did it. With the aid of two of my closest friends, two family members and my homeboy CDB, I bloody did it. Bald and all. And I won’t lie, it was bloody glorious. I loved it. So much more than when I did it solo last year. I got high fives and hugs from strangers. We ran through the closed London streets on a drizzly, chilly Sunday, past some incredible landmarks and sights. And we ran more than I imagined we would. And it made all (though there weren’t many) of those sad preparatory runs worth it when we crossed the line after 1 hour and 31 minutes.

Staying active during cancer treatment is hard, especially if the activity you love most is off limits. So find something you don’t hate and set yourself a goal. But don’t make it an unachievable one. And don’t put any pressure on yourself either. Leave every expectation you have of yourself at home. And I KNOW how hard this is. I’m perpetually hard on myself, and it took a shift not to be. But remember just how much your body is going through and has been through. Give yourself a break and be proud of yourself just for heading out, even if you run for two minutes and walk for 25. That’s totally cool. And remember to be proud of yourself too.

I can heartily recommend finding a #Squad. I honestly believe that my clan carried me round that 10km run – not physically as initially expected – but mentally and emotionally. I held them all back as my pace was slow but I’m so grateful to them for running with me and being such an awesome bunch of people. It makes me a bit teary when I think about it. I salute you all.

I’m off out for a shuffle round this afternoon. I don’t have any aims for distance or time. I’m just going to go out and enjoy moving my body. And I’m going to be grateful that I can.

Here’s a few snaps from the day:

NB: I didn’t fundraise this year, just in case I didn’t make it to the start line or across the finish line. But Big Sis is fundraising for Look Good, Feel Better throughout the year and Sophie is fundraising for Cancer Research. If you wanted to, I’m sure they’d be happy to receive your donations. Choose wisely (LOL).

OH PS – I only went and bloody won Lifestyle Blogger of the Year at the Blogger’s Lounge Awards. Literally never expected that to happen. Not in a million years. If you voted THANK YOU. Couldn’t have done it without you. You’re a rock star!

Getting Chemotional – Part 2

Almost unbelievably, I’ve found myself facing my last chemo session this afternoon. It feels equally like it’s taken an eternity to get here and the last few months have flown. I’ve said again and again that chemo is the gift that keeps on giving – nausea, fatigue, constipation, infections, hair loss, sore feet, painful skin, scaly eyelids, emotional turmoil, more fatigue, mood swings, chemo brain, loss of appetite, relentless appetite, my cyborg woman PICC line – but ultimately, it’s probably going to stop the cancer from coming back, so I owe it a lot. Even though I HATE IT.

Chemo (and cancer) has taken a lot from me over the last few months, but it’s given a lot too. Perspective for one thing, gratitude for another. Determination. The odd emotional melt down. Excessive snot (who knew running with no nasal hair was such a snotty affair?). Appreciation for what all the incredible staff at Guys Hospital and throughout the NHS do. Joy in the little things, pure joy when fatigue doesn’t stop me from doing the things I love. It’s made me  obscenely thankful for the people who have really been there, offering calls, texts, visits, food, love and company when Chris and I both needed it most. I consider that we are very lucky. The (x factor word) journey is far from over, but I’m glad to be getting back on the train after a pretty brutal stop in Chemotown.

I know there are a million posts on what to expect and how to deal with chemo, but I wanted to throw my hat into the ring to share some of the things I’ve found make chemo just that bit easier. This is long. So sorry in advance. And if you’re just starting out, I’m sending you a big dollop of love, from right here.

1) The Dumbledore Deal. You know in Harry Potter and the Half Blood Prince when Harry and Dumbledore go to retrieve the horcrux from the cave? And Harry has to make Dumbledore drink all of the potion before they can get the locket? Well, I think drinking on chemo can be a bit like this, especially on FEC. So find yourself a Harry Potter and get them to engage in the Dumbledore Deal with you, reminding you to keep hydrated even if you don’t feel you can. Drink loads before chemo. Drink loads during chemo. Drink loads after chemo. And keep drinking, even if you feel sick.

2) Fizzy sweets and mouthwash. Chemo makes your mouth gross. From a thick coating on your tongue to a distinct lack of saliva, sores and ulcers, your mouth goes through a range of different experiences during both FEC and Tax treatments. I found Dentyl’s clove mouth wash worked a treat to help me keep my mouth clean and infection free, while the odd fizzy sweet made my mouth feel almost normal for a moment or two.

3) Hair loss. There’s no avoiding the truth of it – hair loss is a bloody kicker. I chose not to cold cap, so I knew all of my hair would fall out pretty quickly, and almost exactly on cue, 19 days after my first chemo, it did. I’d cut my hair short, then gone for a buzzcut pretty much straight after my first chemo to reduce the shock of losing my barnet. While losing the hair on my head was hard, I think I was more affected by losing my eyelashes and eyebrows because my chemo moonface made me look like a cancer patient. Hats can cover up bald heads and eyebrows can be drawn on, but there’s little to be done about empty eyelids. Alas, it’s not all doom and gloom. I’ve had fun playing with headscarves, rocking turbans and wearing buffs with bows – some of my favourites came from ASOS, The India Shop and vintage stores. Hair loss is hard and looking in the mirror is equally as tough some days, but it’s worth it to evict this squatter, hopefully for good.

4) Get away from it. I know it’s tough when you’re full of drugs, facing appointments and battling fatigue but I can’t recommend getting away for a few days enough. At Christmas I spent two weeks in my hometown and during the weekend just gone, I spent a glorious two nights of blissful comfort in Portsmouth. I don’t know if it’s the sea or good company, or just being removed from the situations that have become the norm over recent months, but getting out of London allows me to get away from cancer and just have some room to breathe – so it’s worth it if you can make it work.

5) Support. Being diagnosed with breast cancer as a young woman can feel hugely isolated. I went to one event where I was the youngest person in the room by at least 20 years and I felt totally alone. Luckily (or not so luckily because they’ve got cancer too) but I’m so grateful for my Boob Gang. They know what I’m going through and are beyond supportive when I find myself snot crying in the park. The Younger Breast Cancer Network on Facebook is also an infinite resource of information from women in the same situation as you – whatever stage of treatment you’re at. Dimbleby Cancer Care offer an amazing range of services to make living with cancer easier. Look Good Feel Better teach you how to make your face look a bit more your own when your skin looks like tracing paper and your distinct lack of eyebrows makes you look like an alien. Breast Cancer Care have their Someone Like Me service. The Willow Foundation offer “special days” to help steal you away from the clutches of cancer for the trip of a lifetime. There’s so much support out there if you look for it

6) Emotional blackmail. This sounds like a weird one but before every chemo, I would at some point look Chris square in the face and say in my most petulant voice “I DON’T WANNA DO CHEMO CHRIS”. At this point he would respond with (in his stern, managerial voice) “do you want to go to Glastonbury?” I’d look down at my feet, shuffle a bit and mumble a “yes”. Then he’d say “well then. You have to have chemo. Deal with it”. I’m hoping to bookend my treatment with Glasto (I was diagnosed about one week after last year’s festival and we got tickets for this year and by hook or by crook, I will be there). Find an end goal. Strive for it. It’ll keep you going.

7) Rest and exercise. Knowing when you should rest and when you should exercise is HARD. Fatigue from chemo is a f**ker (sorry for bad language but it really is). You’ll never know tired like it, if you’re affected, but if on some days you can find the strength to work up a little bit of a sweat, it’s worth it. Rest when your body tells you to, try to walk once a day, even if it’s just for 20 minutes. And if you try something more strenuous, leave your expectations at the door. Don’t be hard on yourself when you don’t go as fast or as far or as hard as you used to. Be kind to yourself and your body. Remember it’s going through a lot too.

8) Food and shopping. This is easily the thing I’ve found most stressful about being in chemo. Eating is hard. You either have no appetite, stuff tastes weird or your tongue explodes at the merest hint of something spicy. Shopping is hard. A few weeks ago I went out to buy stuff for tea (dinner to you southerners) and when they were out of stock of the main component of my fish pie, I was so tired I almost cried in the Co-Op. I just couldn’t face shopping. And the aftermath! Washing up! Washing up for days! Endless piles of plates and pots and pans! That’s a pain in the backside too. But ask for help. Most of the time you’ll find your friends are only too bloody happy to help you out. So make the most of it. And if your friend is going through chemo, ask them for a shopping list and do their shopping for them. Drop a cooked dinner off. Just pop in and ask if you can do the dishes (or hoover for that matter). They might not know how to ask but they’ll be so, so grateful.

9) Feel what you need to. Chemo is a whirlwind of emotions (as demonstrated by my posts over the last few months). I’ve been guilty of slapping a smile on when I really didn’t feel like it. While there’s an element of “fake it til you make it”, that’s not always possible and nor should it be. This is hard. Let yourself have a cry when you want to, even if it’s those wracking sobs that leave you feeling like you can’t breathe. Make jokes about cancer if that’s what you need to do even if you’re worried it might make someone feel uncomfortable. Get angry. Cancer is bullshit! It’s ok to say it. It’s ok to feel whatever you want to. And don’t ever feel like it isn’t.

10) Lastly. Most importantly. Don’t give up. You can do this. And me and anyone else who has been through chemo are right behind you. It might feel like you can’t make it, but you will. Then you’ll look back and think “that was a breeze” – even though really, it was a little bit like hell. This quote was sent to me earlier this week (thank you Sandra) and it’s fitting. Remember it:

“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in.” – Haruki Murakami

52 Questions I ask myself on a regular basis during cancer treatment

1) how will I go back to normal life after cancer?

2) what is normal life anyways?

3) what happens if the cancer comes back?

4) can I just run away and go on a really nice holiday, rather than dealing with this?

5) are my eyebrows growing back?

6) what was that pain?

7) I wonder how many times I’ve thought about cancer today?

8) how long til I stop thinking about cancer all the time?

9) is it ok to have a 75th miniature hero this afternoon?

10) do I look like an alien today?

11) how many hats do I need to wear today? Just a decorative one or do I need one for warmth?

12) should I shave my hair off again or do I just let it grow now?

13) I haven’t taken any drugs. Should I have taken any drugs today?

14) I wonder when I’ll be able to drink Innocent Banana and Strawberry smoothie again after the vom incident?

15) it’s 2pm is it acceptable to go to bed right now?

16) when will I get my next nap in?

17) do I have to get out of bed today?

18) soooo. About that holiday…?

19) do I have a temperature?

20) is my boob leaking again?

21) Gladys or no Gladys today? 

22) is it warm in here or am I just having a hot flash?

23) is Jeremy Vine the Wikipedia of the radio?

24) wonder if anyone is pissed off with me talking about cancer?

25) how many episodes of How I Met Your Mother is too many episodes of How I Met Your Mother?

26) is Netflix judging me?

27) what shall I make for dinner that I’ll actually want to eat?

28) am I actually 27 going on 70? I just caught myself knitting and listening to Carole King

29) how on earth do people get through this?

30) …maybe I could go to Bali?

31) OH GOD IS THAT A NEW LUMP IN MY UNAFFECTED BOOB? nope. Just muscle

32) should I go for a run, or should I have another hot cross bun instead?

33) is eating that going to make me feel sick?

34) I wonder if I should text my BCN about that?

35) did that stranger just hear me do that massive chemo burp right in the middle of the park?

36) does anyone think I’m just hiding Voldemort under my hat?

37) what colour will my hair be when it returns?

38) how many colours can I dye it when it returns?

39) who is going to headline Glastonbury 2016? (BY HOOK OR BY CROOK I WILL BE THERE)

40) is it bedtime yet?

41) I wonder how long I can make Chris take off work after I’ve finished treatment so we can go on an adventure

42) PLEASE CAN I GO SWIMMING?

43) is it cold in here or do I have a temperature?

44) A&E? Again?

45) do my drawn on eyebrows make me look surprised today?

46) do the people I’m seeing today warrant a WHOLE face of makeup or just eyebrows?

47) how many headscarves is too many headscarves?

48) do I look like a fortune teller today?

49) do I look mystic Meg today?

50) is it nearly over?

51) how much of a buzzkill is cancer?!

52) can I run away to somewhere abroad and sunny yet? Anywhere will do…just give me a beach and a cocktail and maybe some banging scenery.

You’re Hired!

Being diagnosed with cancer is a bit like getting an offer for an exceptionally bizarre new job.

“Hello there is that Miss Purkiss? Hi there Alice, look we’ve considered your application – well, we know you didn’t apply – but we’ve considered your suitability and we’d absolutely love to offer you the role of cancer patient for 2015/2016. Ahhh, no unfortunately you can’t decline the offer. These wheels have been in motion for months now and I’m afraid you’re stuck with us until the Project is completed. We reckon it’ll be about a year til Project No Evidence of Disease is all wrapped up. You start right away, literally this minute and your life is ours for the next 12 months, ha ha ha. Your hours are 24/7 and I’m afraid we don’t have any budget to pay you a salary. We’ll be in touch with you regarding next steps soon.”

Immediately after hearing that you’ve got the “job”, you’re thrown into it. There’s meeting after meeting with medical professionals, scanning you, prodding you, jabbing you. Your life is completely taken over by this new role, and your new boss Cancer is a bit of a bastard.

He doesn’t care that you’ve got holiday plans so won’t approve your annual leave request; he doesn’t believe in a work/life balance so your social life is out of the window; he makes you drastically change your appearance and robs you of your appetite; he makes you work until you’re empty of anything and then you’ve got to get back up and do it again. There’s no opportunity for promotion, no career development – in fact this new job puts your career as you knew it on hold, there’s no fun social events, your friends and family hate seeing you work yourself into the ground but know that you have no choice. Your medical team become your co-workers but you have no control over the tasks at hand, you just have to do exactly what they say and you have to trust implicitly that they’re doing it for the good of The Project.

But this new job thrusts you into a new world where you find solace and joy in the small things. Where you really appreciate the times when you get to take a breath with the people you love. Where these new co-workers prove to you that there are some really bloody wonderful people in the world, and that you’re lucky enough to have them take care of you. You don’t take for granted the days when you can find time to get away from “work” and go out for a run. You appreciate more than ever the days off when you can eat out with your friends (and enjoy it).

And some of the people you meet working on a similar version of their own Project really are incredible. And you marvel at how they’re dealing with their own new job and you take strength from them and support from them and you’re proud when they make it through another meeting. And in a way you’re grateful because you know that without The Project you’d never have met them.

Despite the fact that your new boss is relentless and the new job feels almost impossible at times, you know it’ll give you a new perspective for when you’re ready to go back to “normal” life. You actually feel kind of lucky. Obviously, not everyone ends up working on this project (and you’d really like to keep it that way) but you’re more grateful than you can express for the people working on it with you – whether medical professionals, friends, family or “co-workers”.

When it’s over, you’ll live with the memories of the Project. You’ll have to figure out what life is like without it and you’ll constantly be thinking about what will happen if you get called up for the role again. But for now, it’s just a temporary job, in a firm you’ll hopefully never have to deal with again and coming out of the other side of it will be the greatest achievement of your life.

Hitting the Wall

This isn’t the post I was intending to write next. I really want this blog to be a helpful resource for people who’ve learned that they’ve got cancer and to prove that even though hearing the words “it’s cancer” can be devastating, it’s still possible to laugh your way through it. And I have laughed my way through it so far. I think, generally, I’ve stayed pretty positive, found things funny in the darkest situations and kept a smile on my face when I’ve had setback after setback and generally remained pretty chipper. Last night, though, I hit the wall.

Now if you’ve either run a marathon, or seen Run Fat Boy, Run (I know which is most likely for you charvas, apart from you Andrew and Emma, you two don’t count here) you’ll be familiar with “the wall” as the point in a race where you feel you absolutely can’t go on any longer. I’m led to believe every single muscle in your body hurts, your brain begins to tell you that you can’t carry on, and you feel physically and mentally overwhelmed by the challenge in front of you, as well as being completely exhausted by the struggle you’ve already had.

I’ve never run a marathon. Probably never will. But with surgery and half of chemotherapy behind me, but the other half of chemo, possible radiotherapy and the prospect of another surgery ahead of me, it feels like I’m in the midst of one. And last night I ran head first at full speed into the wall, then found myself in a heap at the bottom of it, sobbing, unable to move and slap bang in the middle of my own very raucous but entirely booze free pity party.

Generally, I’ve kept my shit together so far throughout this whole process. I’ve let a lot of things wash over me, I’ve rolled with the punches, I’ve kept calm and carried on – you know, all them cliches, but last night I just didn’t have the energy for it any more. I didn’t feel like I could take another step forward without throwing up or passing out or breaking down. I wanted to give up.

This whole week, I’ve been building up to a meltdown. From feeling frustrated at my renewed inability to run more than 100m, to the rage I’ve felt because of not being able to tie my hair up in a messy top knot, worrying continually about my loved ones, struggling to look in the mirror, panicking about life after cancer and trying not to let the stupid things people say to you when you’ve got cancer get to you, all while trying to maintain a relatively normal life, I’ve been a bloody pressure cooker of emotional turmoil. Holy paragraph batman, that’s just a fraction of the things I’ve felt in the last week and it’s exhausting to read let alone experience.

Though I’m halfway through chemo, and I should feel like I’m getting closer to the end of active treatment and this massive blip in my life every day, when I look at how far I’ve come since 7th July and I think about what I’ve got to do before this whole saga is over, it still feels like there’s a painfully long way to go. And what comes next? What happens after I hear those words “no evidence of disease”? How do I even begin to get back to a normal life? Do I even want a normal life? What is a normal life after cancer? There’s still so far to go, which is so exhausting to think about when I already feel like I’m running on fumes, but what happens after is terrifying too. I’ve had such a shift in perspective, it’s hard to know what life will look like. And I know, I know there’s no point in worrying about this now, but as a perpetual worrier, it’s hard not to. And it’s hard not to be overwhelmed by that too.

I never wanted this blog to be a place for me to have a pity party, especially one without booze and M&S party food (that’s what makes a party a party amirite?). Please don’t misunderstand me and think that’s what this is. It’s just part and parcel of this bloody cancer package and I want to be honest.

In true Alice fashion, I gave up on yesterday, read some Margaret Atwood (am addicted, she is my queen) and tried again. Today isn’t much different. I don’t think tomorrow will be much different either, and maybe not the next day. My worries about the future and about risks of reoccurrence will remain. I’ll still be anxious about what life will be like after cancer and I’ll still have no clue what to make for dinner because I just can’t face cooking or washing up or even thinking about what I could eat. But I know that this dark weather will pass in favour of sunshine and I’ll feel totally fine again, but for now, uncharacteristically, I just needed to be 100% honest and  put my hands up and say “actually, I’m not doing so well.” And that’s alright.

PS: I know I’ve banged on about finding the funny side of living with cancer at 26. I’ma find you something to have a good old chuckle about soon. Maybe I’ll write an ode to peas – the only thing I really want to eat after chemo or a heartfelt plea to my appetite and joy de food to return soon. Perhaps I’ll formally introduce you to my prosthetic breast Gladys (she’s a crowd pleaser, I’ll tell you). Either way, forgive me for the somewhat blue tone my last couple of blogs have taken. There’s still a LOT of joy in my life, including a flying Spongebob Squarepants, but I just needed some space for this crapola too.

PPS: Sorry this is an essay.

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Getting Chemotional

Well. It seems like this post has been an awfully long time coming. But on 12th October, I had my very first session of chemotherapy. I’ve never felt more like I’m being treated for cancer than in this last week. When I got my diagnosis back in July, we were initially planning to do chemotherapt first, so I felt like I had been building up to it for months. I never thought I’d actually cheer when my surgeon gave me the all clear to start having poison injected into my body, but alas, I did.

My friend Georgia came up with this blog post title about eight weeks ago. I’ve been patiently waiting to use it and now is the perfect time, because over the last fortnight, I have been more than a bit chemotional. Before my first session, it was weird waiting for something that could have the potential to make the next few months of my life exceptionally tough. It was strange to be excited to start something that I was actually completely terrified about. I’ve said before that the great unknown is not my friend, and chemo was the biggest unknown I’d ever had the pleasure of meeting. If cancer is a squatter in my life, chemo was my unchartered Everest, with no maps, no footpaths and no idea of what was waiting for me at the peak.

A lot of people have asked me how the chemotherapy itself was. And the answer there is simple. It was exceptionally quick, incredibly straight forward and really, relatively painless. I’m doing six cycles of chemo, with two different sets of drugs. The first three cycles of my treatment is called FEC chemotherapy, because it’s made up of three drugs – fluorouacil, epirubicin and cyclophosphamide. The drugs were pushed into my veins via a cannular in my forearm and I was given plenty of fluids so that the chemotherapy drugs were less harsh on my veins.

One of the things that I found most difficult ahead of the chemo, and I feel like I’m repeating myself here, was the fact that I had no idea how my body would take to being pumped with poison. Side effects and experiences vary from person to person, but can include risk of infection, bruising and bleeding, anaemia, nausea, tiredness, upset stomach, taste changes, sore mouth, skin changes, sore eyes and headaches. You know, just a couple of mildly problematic things. Nothing too unpleasant (!)

Though the last week has been hard, it hasn’t been completely intolerable. It has been manageable, but tell that to the me five days in who was incredibly grumpy and feeling fairly sorry for myself. I’ve had some pretty intense nausea, crazy heartburn, been more tired than I even knew was possible, spiked a temperature and had to go to the hospital to check I wasn’t neutropenic (having way too few white blood cells), thrown up in a hospital recycling bin, not wanted to eat anything apart from maybe half a bag of McCoys salt and vinegar crisps (possibly the most distressing side effect for me. I love my food) and being unable to drink liquid nectar of the gods, Sainsbury’s Cherries and Berries squash. But it’s been manageable. It is one week since my first chemo and I’m starting to feel more like myself again. I’m still not excited about eating but I gave a Sunday lunch at my local pub a good shot yesterday and I could definitely get on board with a smoked salmon and cream cheese bagel for breakfast one day this week.

Obviously, one of the more obvious side effects of chemotherapy for breast cancer is the hairloss. I’ve talked about this throughout my cancer treatment and I think  it’s important to explain myself a bit here. Despite being worried about losing my hair from day dot, I made the decision not to use a cold cap during my chemo. A cold cap can offer some protection against hair loss and I’ve heard of ladies who have had brilliant results – but after a lot of umming and ahhing, I decided it wasn’t for me. Along with all the other uncertainties of chemo, there wasn’t enough of a guarantee for me that it would work on my fine hair and I couldn’t face going through it to then potentially still lose my hair anyway. I didn’t think I was strong enough. So I embraced the buzzcut. And got a wig. Some people say my hair will start falling out around day 10, some say day 14. Others say 19. Soooo, watch this space yo. I’ve been prepping my headscarf game and truth be told, I actually feel kinda glam. And yesterday, in my red and white polka dot number, I felt like Rosie the Riveter.

I’m sure millions of people have said it, but I can’t wait for this bit of treatment to FEC off. One down two to go, followed by three docetaxol. Let’s DO THIS.

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