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.

Radiotherapy

When it comes to cancer treatments, radiotherapy is the lesser-talked-about sibling of chemotherapy. It doesn’t have the reputation that chemotherapy does, it isn’t perceived to be as blatant in the way it goes about its business, and it generally isn’t as widely recognised as part of Operation Let’s Blast the Pants off Cancer.

But radiotherapy, despite all these things, is still an integral part of cancer treatment for many people and one which can take its toll, if not as much physically as its predecessors then emotionally and mentally.

The treatments may only be 15 minutes long, but hot-footing your way to the hospital five days a week for a minimum of three weeks is hardly anyone’s idea of a good time.

I was very apprehensive ahead of my first session of radiotherapy. I’d had my CT scan and my planning session. The team had all the measurements for ensuring I’d be blasted in the right place and I’d learned the position I’d be spending 225 minutes in over the following three weeks (it’s a bit like being in fifth position in ballet, or what your arms would be doing if you were holding a beach ball above your head). I knew the basics of what I was going to be experiencing.

But it was quite different when I found myself on that first day, back in a hospital gown, back in a clinical setting, awaiting the last part of my active cancer treatment.

It was quite different when the team, though incredibly friendly and wonderfully reassuring, muttered numbers and words at one another over me in some kind of medical language that I had zero understanding of: ‘One right and one ant’.

It was quite different when they shifted me into exactly the right spot on the bed, telling me not to help them, but to let them manipulate my body as they needed to.

It was quite different when they left the room, the risk of them being exposed to what I was being exposed to, too great for them to remain.

It was quite different when the machine clunked and clicked and growled its way around me, blasting The Artist Formerly Known as Boob with radioactive waves, eradicating any final stubborn cancer cells which may have survived the poison of chemotherapy.

Radiotherapy is the last flourish across the finish line, the last push in a pretty brutal series of events. But for many people, the end of radiotherapy and active treatment marks the beginning of something else – a whole new journey, a new set of obstacles, a new bunch of challenges to tackle.

But that’s a topic for another blog post. Maybe to onlookers it seems like it’s easier than what has come before it. Maybe because it’s often the last thing on the treatment menu for most patients, it’s expected that the feeling of almost being ‘done’ will carry you to that victory lap.

I found radiotherapy easier than chemotherapy, but it’s all relative. No matter what has come before it, finding yourself in that environment will never be easy. It’s manageable.

Originally written for and posted on Breast Cancer Care