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.

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