Erasing the Stigma of PTSD

I must have been about 16 when I first heard about PTSD. It was on an episode of Grey’s Anatomy, one of the very few storylines I still remember more than 10 years later.

Like so many other people, at first I was convinced that PTSD was something that happened to people in the armed forces, something that veterans suffered from. A mental health condition which, unlike depression or anxiety, would have very little chance of one day affecting me.

It took a few years for me to encounter it in another context. I remember reading that someone famous had suffered from it, and thinking ‘they haven’t been to war, that’s not it. They’re exaggerating’. As I got older, I realised how wrong I had been.

PTSD Can Affect Anyone

Post-traumatic stress disorder can affect anyone who has had a traumatic experience. And any situation that someone finds traumatic, even if it would not necessarily have been considered traumatic by someone else, can trigger post-traumatic stress disorder. An accident, childbirth, the loss of a loved one, assault, those are just a few examples of events that can lead to PTSD.

PTSD can happen at any time after a traumatic event. It usually starts within a few months, but it can sometimes take years to develop, even decades if memories have been buried deep.

The first time someone told me it sounded like I was suffering from PTSD, I shrugged it off. They were the words of a friend, in early summer 2020. I was only a few months out of surgery. Surely it was normal to feel anxious, to replay conversations in my mind, to see the same scenes over and over again, to be easily triggered, to have excessive emotions, to feel numb, to refuse to talk about my situation, to avoid places and people that reminded me of cancer. Surely, it would pass.

It did not pass.

In August, a psychologist told me they believed I could be suffering from PTSD. All the symptoms I described to them, my daily struggles, were consistent with an anxiety disorder, low mood, and trauma-related mental health conditions. Post-traumatic stress disorder was a likely culprit.

The Stuff of Nightmares

I will not get into the details of all the possible symptoms of PTSD – I am not medically trained, and there are so many resources online that can offer help and advice (I will link a couple of them at the end of this post). All I can talk about it my experience of trauma, the symptoms I have that are consistent with a diagnosis of PTSD, and how it affects me at the moment.

I have had regular flashbacks for months. Moments when I lose track of where I am, and find myself reliving parts of my cancer journey. I am irritable. For months, I felt completely numb. Now, I have all of the emotions, all of the time. I have insomnia. I live in fear that something bad is about to happen. I startle easily. I avoid places that remind me of cancer. I feel sick talking about my diagnosis. I get triggered by the smallest thing – a picture of an ultrasound or a letter from the GP in my letterbox. Smells, noises. Lights.

For the last few weeks, I have been dealing with one of the nastier symptoms of PTSD: nightmares. They happen every single night, at least once, sometimes three or four times.

I will wake up feeling panicky, exhausted, sweaty, terrified. Some of the nightmares are very clear – they are memories of the worst moments of the last few years that will play in my head, over and over again. So much that I feel lost. I feel like I am back in those horrendous months before surgery. I will be reliving hospital appointments, tests, results. Sometimes they are painfully close to reality, sometimes I get told my cancer is terminal. Sometimes I do not make it out of surgery. Sometimes I learn that someone I love is going through what I did, not me.

Some of the nightmares are only vaguely related to cancer, but feature hospitals, bad news and people getting hurt. They are disturbing, sometimes violent, they often end with me walking around aimlessly. I get lost in hospitals. I wait for hours in a waiting room that gets darker and darker.

Have you ever been terrified of closing your eyes? Have you ever cried of exhaustion, knowing at the same time that you would get no relief when sleep would take you? Have you ever been afraid of what your brain would make you go through when you needed a nap?

I fear sleep. Every night, I push back the time when I will actually go to bed, because I do not feel ready. I do not want to face the nightmares again. I do not want to wake up after a couple of hours, even more tired than when I went to bed, craving the thing I also want to avoid.

Each night, the cycles repeats. Fight sleep. Push back my bedtime to 10pm, 11pm, 12pm, 1am. Fall asleep, sometimes despite myself, sometimes with the lights on. And wake up, after a couple of hours, feeling absolutely spent, frustrated, heart racing and tears all over my face.

I think the most I have slept on a single night, in the last three weeks, has been about five hours. These days, it is closer to two or three hours a night.

And as a result, my symptoms during the day get worse. I am even more prone to tears, even more irritable, even more disconnected from reality. Even more likely to have an anxiety attack for the smallest thing.

I am tired.

We Are Not Alone

I know so many people with PTSD. Friends, family members, slight acquaintances. I have read about so many more people having it, living with it, trying to overcome it.

Our experiences are all so different, but they are all valid. Do not let anyone tell you you cannot have PTSD because your situation was not traumatic enough in their eyes. Do not let yourself think you cannot have PTSD because your trauma was somehow less than someone else’s.

Trauma is personal. Trauma is subjective. Trauma is welcome to pack its bags and go away.

Useful links:

https://www.nhs.uk/conditions/post-traumatic-stress-disorder-ptsd/symptoms/

https://www.mind.org.uk/information-support/types-of-mental-health-problems/post-traumatic-stress-disorder-ptsd-and-complex-ptsd/about-ptsd/

https://www.ptsduk.org/

Rebuilding My Identity, Finding My Voice

People often say that serious illness made them reconsider their priorities. That it made everyday troubles, fleeting friendships and things they had previously enjoyed seem unimportant. ‘Did it change your whole outlook on life?’ is a question I have had to answer more than a handful of times. Did it?

At first, I barely noticed it. During treatment, I was intent on sticking to my well-established routine. Get up, have a shower, put my face on (even though I was probably going to end up crying my make-up off), get dressed. Hop onto the train, get to work. Put in exactly the same amount of effort I would have prior to my diagnosis. It was comforting. I could pretend nothing had changed.

I was adamant that I was still the same person. I did postpone some things – I had considered moving abroad again, a change of scenery. That was no longer an option, but I told myself it would still happen – in time. Cancer was a fleeting period in my life, I would be able to give it a start date and an expiration date, frame it neatly and fold it away.

But as the months passed, and as I started realising that cancer was more than these few months I had spent waiting for treatment, that I would be living with the aftermath for years to come, it became obvious I was lying to myself. My priorities did change, they are still changing, but not in a way I had been expecting.

I did not have a big revelation one day. There was no dramatic declaration, despite my penchant for the theatrics. None of these things you see in films, with someone suddenly quitting their job and deciding to go on a trip around the world. No leaving my flat to go live on a farm and breed horses. No sudden, rash decision, no promise to dedicate my life to God, to find everlasting love, to go back to my family.

The changes were subtle.

My previous blog post was all about how I have lost myself. I do not recognise myself in the mirror, I am a shadow of who I used to be. I lost so much of my identity over the last seventeen months (seventeen months – my cancer is a toddler!), that I had to rebuild it from scratch. It is a long process. Some days, I feel more lost than found. Some days, I feel like I have not even started the process.

And to exist, to find and fight for my identity, there are things that I cling onto.

They are the causes I care about, the ideas that I stand up for. In forgetting about myself, I have only made these ideas stronger in my mind, and as I am rebuilding who I am, I am focusing on these things I am passionate about. They are the only things that make sense, the ones that keep me going, the beliefs and engagements that are strong enough to support my weight, help me reconstruct a whole new identity, and still be myself.

I have always been politically aware. My parents might not have passed much of themselves onto me, but that is one thing they would not let me forget. How important it was to understand politics, to stand for what I believed in, to fight for my voice to be heard. Their political stance might be a lot milder than mine (they are, after all, late boomers), but the idea was there. The world matters beyond yourself, and you must fight for it, you must fight for equality and acceptance and tolerance, and for a better world.

I tried not to allow myself to be overwhelmed by what was happening to me and forget about the rest of the world. Yes, there have been times in the last year and a half when I have wanted to scream ‘this is about me’ at the top of my lungs. When I have wanted to close my eyes to what was happening around me, to the pandemic raging around me and say ‘think about ME, think how bad I have had it’. But instead of changing my priorities and focusing only on myself, I have directed most of what little energy I had towards the things I believed in.

I am a feminist. I am a left-wing environmentalist. I am involved in all sorts of movements fighting discrimination, be it based on gender, race, or sexual orientation. I spend hours and hours reading about it all, trying to understand what I don’t know, trying to help by increasing my awareness and knowledge. I want to work, and keep working so that people understand cancer better and help others have a better experience than I did.

There is also a selfish reason why I do that. It helps me find purpose. I find reasons to keep fighting, I feel like I belong somewhere. When speaking about these things I care about, I see tiny little sparks of who I used to be, and of my true self. I find a voice again – my voice. I am no longer my body, I am no longer the fun-loving, easy-going girl I was a couple of years ago, but I can still fight for my ideals.

I am more radical than I used to be. I am more quiet in my personal life, and more outspoken about the causes I care about. And I am quite happy about that.

Cancer did not change my whole outlook on life. It did not change my priorities. What it did was break me down into a million pieces, and as I am putting them back together, they take a slightly different shape.

Who Am I?

‘Please tell me about yourself.’

This question has been haunting me over the last few weeks.

It first came up in a scenario which I had not expected to be a trigger – a job interview I was conducting with a colleague. It is a most basic interview question, which I have answered myself many times. It is an easy one, you just have to find something witty to say, something truthful but exciting. But as I sat there, silently listening to someone else describe themselves with a sense of confidence and ease, I felt a pang of anguish. Would I be able to do the same?

It came up again during my first appointment with the therapist I have just started seeing, but this time it was directed at me. I did not have the words, and I started crying.

Two years ago, I know exactly how I would have described myself. I had perfected it to an art, and I had smart and playful ways of describing myself, with a number of variants – for job interviews, on a dating profile, when meeting strangers, as an awkward first date question.

I have lost that sense of self. The first, and pretty much the only thing that comes to mind when I think about that question is ‘I had cancer’.

Most days, I feel like it is the only thing that defines me.

I used to say I was ‘aa sister – with two brothers, one younger, one older’. Now, I am the only member of my family that had cancer.

I used to say ‘I am in my twenties’. Now, I had cancer at an early age.

I used to say ‘I love art, crafting, making things, discovering new techniques’. Now, I try to craft to occupy my hands and stop myself from thinking about cancer.

I used to say ‘I grew up in France, and I moved to the UK right after uni’. Now, I went through cancer with my family in another country.

I used to say ‘I am determined, ambitious and always up for meeting new people’. Now, I am tearful, shy, and scared that other people are going to see that cancer broke me.

I used to say ‘I love writing – I am in the middle of a short story at the moment’. Now, I write a blog about cancer.

I used to say ‘I am a rock for my friends, I am someone you can rely on’. Now, I crumble and can barely hold the weight of my own pain, let alone that of others.

I used to say ‘I do not want children’. Now, I cannot have them.

I used to say ‘I love travelling, I am always up for an adventure’. Now I know I will be refused travel insurance because of cancer, and I will have to coordinate my holidays with my many appointments.

I used to imagine my friends thinking of me, and describing me me as ‘a friend from uni’, ‘a friend from work’, ‘my old school pal’, ‘my old tennis partner’, ‘that girl with the French accent’, ‘the one with all the shoes’, ‘the one who listens to weird music’. Now, I know that for a lot of them, I am ‘the girl who had cancer’.

I feel like I have no identity, no personality outside of cancer.

Even when I look into the mirror, I barely recognise myself.

Strands of grey have appeared in my hair for the first time, and they have only become more prominent over the last few months.

I lost a tremendous amount of weight after the surgery, which I put back on after starting HRT, and now again because of the antidepressants.

I have scars, which my eyes go to as soon as I soon as I pass a mirror. It does not matter if I am wearing clothes over them, I look for them, as if I could see them through the jeans I wear. Some of them are scars from the surgery, some of them are wounds that I have inflicted to myself during panic attacks.

I have messy, medium length hair as a result of the many post-cancer haircuts I decided to get. I am growing out the undercut I shaved when I wanted to regain some control over my body.

Even the tattoos I got and which I absolutely love are there to remind me of cancer. They have other meanings too, but they are part of my cancer.

The one on my left arm are words from On The Road, with black stars that reference Kerouac, David Bowie and Harry Potter all at the same time – probably three of the things that most defined me between the ages of seven and twenty-seven. But the words ‘mad to live’ remind me of how I felt in those first few weeks after the diagnosis. They are cancer words.

The tattoo on my right arm is made up of circles spelling out ‘you won’ in Morse code – a broken, incomplete circle on the inside, and a full one of the outside, a metaphor of how the surgery has left me. It is a timeless quote from Charlie and the Chocolate Factory, it is the line that broke my heart in the last series of Schitt’s Creek, but it is cancer as well. I trace it with my fingers as I write this blog, and it feels like I am tracing the last fifteen months of my life.

I am my cancer. I wish I was not. I hope a day will come when I am more than that.

World Cancer Day

Today was World Cancer Day. A day to celebrate those who won, remember those we lost, support those who are still fighting and give hope to those who will fight in the future. A day to raise awareness and stop being afraid.

It was a long day. I woke up in pain from the physical repercussions of my low oestrogen levels. I had my first counselling session. I cried hot, burning tears. I had flash-back. I said words I had never said out loud. I took another step towards recovery.

On this day, we all have a part to play. Whether it is taking care of your own body, paying attention to the signs, raising awareness, remembering a friend, making a donation towards cancer research, saying a kind word to a loved one fighting cancer, driving someone to an appointment or listening to someone’s story – it all matters.

And on this day, I am grateful to everyone who has been part of my cancer journey, however big or small your contribution was. Thank you. It all matters.

Family – The Burden of Genetics (I)

When I think about family, I usually think of people. A moving, imperfect circle, individuals all coming together, fighting, loving, arguing, hugging. People hanging out at big events, related by a multitude of ties, some unbreakable, some so thin they disappear over the years.

I always saw my family as this group of people, some with whom I had great relations, some I barely ever spoke to. I had never defined family based on whether we shared any blood, any DNA. Whether someone had married into the family or was on the same branch of the family tree never mattered to me.

Until one day, when it became all that mattered.

I was told early on, the day after my diagnosis, that there were two potential causes for my cancer. One was that it was random. Faulty hormones, bad karma, a variety of factors that could contribute to my developing womb cancer at a ridiculously young age. The other explanation would be genetics. There could be, running in my family, a genetic condition that had until then remained undetected, and my cancer could be one of the many manifestations of this genetic mutation. The overwhelming majority of womb cancers are random, and happen in individuals who have no family history of cancer. But a small percentage are due to various genetic conditions, and these cancers tend to appear much earlier. Because I was completely out of the usual age range for womb cancer, I was a candidate for genetic testing. It would not change the treatment plan, or the outcome of this particular cancer. But it had the potential to change everything else.

I was referred to a genetics specialist on the very day of my diagnosis. At the time, I did not realise how much that weighed on my shoulders. I was told it would take months for me to get an appointment, and that it would only be the start of my journey into genetics – if I decided I wanted to get tested, after discussing it with the specialist. I agreed to speaking to the geneticist without even thinking about it. Since it was going to take months, it was better to get started early.

Pretty soon, I received a bunch of forms to fill in about my family, about where each branch of my family came from, our ethnic background. I then had to fill in separate forms about each of my first and second-degree relatives. Names, dates of birth and medical history of my parents, brothers, grand-parents, aunts and uncles. Date and cause of death, where applicable. Any medical history that could be relevant: cancers, unexplained medical conditions, etc.

It was an incredible, uncomfortable amount of work. I had to ask each of my parents to quiz members of their respective family. My mum’s family was straightforward. No cancer in the immediate family, and no trace of it for generations. It is actually quite unsettling to realise that I am the first in four generations to get cancer. That seems terribly unfair.

We hit a hurdle as soon as I started filling out the information about my dad’s side of the family. We know very little about his father, and his life after he left his family when my dad was just a toddler. My dad has always refused to look into it, to get in touch, to renew the ties before his father died, back in the early 90s. He could have had cancer, and we might not have known about it.

My dad also had to ask his elderly siblings, two of which are currently battling their own advanced cancers, about any genetic testing they might have undergone. It must have been terribly taxing. I have rarely been so grateful to have someone to delegate some of this work to.

We filled in the forms, using all the sections allocated and then more – the form only allowed for three siblings for each generation, and my parents both come from much larger families. I had to add a few extra pages of names and data, before sealing the envelope and sending it off to Oxford.

As I was doing this work, I also started looking more in depth into what a genetic condition could mean. I did the very thing that the nurse had asked me not to do during our first appointment, and I went on an endless search for answers on the Internet.

I read pages and pages of information about potential genetic conditions, thinking and overthinking anything I knew about my family. My aunt is battling breast cancer – there are several genetic mutations that can cause both breast and gynaecological cancers in some families. My uncle is fighting pancreatic cancer – although there are many factors that could have contributed to his specific cancer, it is also one of the cancers associated with Lynch syndrome, which causes a predisposition to a wide range of cancers, including womb and colon cancer.

Because of these cancers on my dad’s side of the family, and the unknown threat of his own father’s family history, I had somehow convinced myself that the likelihood of a family genetic condition was pretty high. Doctors had told me that my cancer was more likely to be random. But they had also told me before that the chances of me having cancer at my age were almost non-existent. When you are one in a million, how can you then trust that your cancer will follow the most common path?

A genetic condition like Lynch syndrome would have meant that, even if I beat this womb cancer, I was at a much higher risk of developing other cancers in the near future, if it had not started already. My life would be very different. I was scared. I was terrified. For months, I analysed every single thing happening in my body, convinced that it was the sign of another cancer growing somewhere else in my body. More than once, I asked myself if it really was worth undergoing treatment, if I knew cancer was going to be a very real threat in the future. If it was only a matter of time. I will be honest. There were days where the possibility of being riddled with genetics conditions made me think of giving up altogether.

The one happy thought I had was that, if I did have a genetic condition, I would never pass it on to any children. It is bleak, when your one ray of hope is that your hysterectomy means you will never pass on faulty genes.

By agreeing to speak to a geneticist, I had agreed to open the door to an ocean of possibilities, each scarier than the next. I agreed on the basis that it is better to know in advance what you are about to face. I have said it before, I hate surprises. Undergoing genetic testing is pretty much as close to finding out about your future as is possible in this day and age.

In early December, as I was coming to terms with the delay in my operation, I received a letter from the genetics clinic, telling me I had an appointment scheduled for Friday, 14th February 2020. Well. I was not going to have a hot date on Valentine’s Day anyway, so I might as well have an appointment with a geneticist.

It felt so distant, so far in the future that I pushed it to the back of my mind for a while. I focused on the task at hand for the next couple of weeks: getting the surgery done. Everything else could take a backseat. But the moment I saw my brothers again when they came to visit at Christmas, a new threat jumped into my mind.

If a genetic condition was to be discovered, it would not only affect me. It would affect them. It would affect my parents. They would have to get tested. I would be the one triggering a series of reactions I had not foreseen. Was I ready for this? Were they?

All of a sudden, the threat of genetics became unbearable, and the guilt, the guilt I felt at the idea of being the one throwing my family into disarray was undescribable. I could not do that to them. My existence was putting theirs in danger. My medical history could unravel their lives.

Spoiler alert – it did not. But the feelings were there, for months. And they deserve a blog post of their own.

Talking About Cancer – Making Light of It

Today marks exactly one year since the day my operation was first scheduled. It is also six days until my next check-up at the hospital, for the dreaded one-year mark (or as close as we could get without having me go for a check-up at Christmas).

At the moment, it is impossible for me to spend any length of time during the day not thinking about cancer. It permeates everything, it colours every feeling, every decision I make. It makes me cry, it makes me sick with worry, it makes me crumble to the floor in the shower until the water goes cold, it makes me forget how to breathe in the middle of my morning walk, and fall over in the park.

Because cancer is all-consuming, it is almost impossible to push it to the back of your mind, and not think about it at all. You need to find other ways to cope. Ways to tame cancer, to make it less of a threat, make it into a subject you can discuss, something that can make you laugh as well as cry.

I have found that making light of cancer helps. Making jokes, bringing it up in an unexpected way and observing people’s reactions can be priceless. When you make fun of it, for a few seconds, it no longer is the big C, or the other C-word. It is cancer, and it is something you can bring up without fear, something you have earned the right to laugh about.

I have always loved dry humour. Saying something unexpected, sometimes a bit dark but that will bring a laugh upon someone’s lips – or a shocked gasp, depending on who my audience is.

Just this week, even though I am battling one of the darkest weeks I have had all year, I made two of my ‘cancer jokes’, and it felt amazing. They were awkward, they were uncomfortable. They were not necessarily funny – I definitely will not be quitting my day job to start a career as a comedian – but they did make me feel more in control. For a few precious seconds, it felt like cancer was mine to beat, mine to laugh at. If I can laugh about it, surely it cannot hurt me anymore.

I was on the phone with a friend at the weekend, and we were talking about how I have been having a lot of mood swings and have been feeling very tearful lately – even more so than usual. My friend was asking whether I thought it might be hormone-related, or could it be an issue with my antidepressants maybe? In a deadpan, slow voice, I interrupted her and said ‘God, I hope I’m not pregnant’. A couple of seconds of silence, and an awkward laugh followed. Sorry to have made you uncomfortable – personally, I think that has been the highlight of my week so far.

The other joke I made was during a group video call, with a lot more people than I am usually comfortable with. I had not spoken to some of them since the summer of 2019, before it all happened, but they all knew, either because they had been told by other people or they saw something on social media, or read this blog. We were talking about how long it had been since we last saw each other, and I said ‘well, it’s been a while. Last time we spoke, I still had a uterus’. Some faces looked shocked. There were a couple of laughs, a few shaking heads and one amused ‘Can’t argue with that’.

I have been using humour to cope for months now. Earlier this year, I uploaded a selfie on social media, showcasing my brand new short hair and using a caption that would have made my mum cringe: ‘Getting rid of my hair like I got rid of that cancer – #snipsnip’. I felt so powerful in that moment. Cancer was nothing more than a punchline. Snip snip, my hair. Snip snip, cancer.

I understand these comments might make people uncomfortable. Not everyone is happy to have a laugh about something so serious. But for me, it is a way of getting over it, of proving that cancer is not as threatening as it looks, of feeling like I have the upper hand for once.

I think it is also important to show people that I can laugh about it. If I can make jokes, if I can make light of a terrible situation, maybe people will start feeling comfortable around me and my issues. Maybe they can make their own jokes, and I will laugh at them – no puns though, nothing make me cringe more than a bad pun.

I have earned the right to make those jokes, and to laugh when you make one. Not everyone with cancer will see it that way, and for some people cancer will always stay off-limits. For me, making light of cancer is proof that it has not taken over my sense of humour. I can still be hysterical.

Well. Not etymologically.

Talking About Cancer – The Power of Words

Cancer is big. If there is one thing that we can all agree on, it is that cancer is massive. When you first hear the words, it upends your life in a second. And then, it starts affecting the people around you, your friends, your support network, your family, people you had not thought about. And what I have come to realise is that we all have one thing in common: we struggle to find the right words to address cancer, and discuss it.

Does it come from a place of fear? The word ‘cancer’ itself is unnerving. A couple of years ago, I told off my older brother, who had started using the phrase ‘c’est cancer’ (‘it’s cancer’) to say ‘that sucks’. He had picked it up from some French gamer on Twitch, and was using it so much it drove me crazy, and not just because it is grammatically incorrect. I told him it made me uncomfortable, and I think that was because of the power I gave that word. In my mind, ‘cancer’ had always represented something horrendous, something so severe that the word itself made me feel scared.

I have now come to terms with it. I can say the word without feeling anything, without feeling scared or crying. It is everything else that I struggle with.

There is no right way to talk about cancer. There are no right words, because they all feel wrong. They feel like they should not have been uttered. They feel private, they feel hurtful, they feel dangerous.

From the moment you decide to talk to people about your condition, you have to be careful what words to use. How to even start the conversation. I think every time I told someone, I started with some version of ‘I just wanted to share something with you – I have had some bad news. I was at the hospital the other day and […]’. I felt like that was a good start. It prepares your audience for what is to come. It is not as abrupt as coming out and saying ‘I have cancer’ straightaway. By making it into a story, with an introduction, by setting the tone and narrating it like a tale, it almost made me feel like I had it together. It was a story, it had a beginning and a clear narrative structure. And when the word ‘cancer’ appeared, whoever I was talking to was not taken aback. I had led them there, and made their experience more peaceful than my own.

When talking about what happened to me, I am so careful about the words I use, the sentences I write. Consciously or not, I make a choice every time I talk about cancer. Just take the first sentence of this paragraph. ‘What happened to me’. That was a deliberate choice. Making it sound like something that came upon me, diluting the message by using a vague concept. It does not sound as real as ‘when talking about cancer’, does it? And it puts me in a passive role, a spectator to my own life. Just think about how long it takes me to write these blogs if I think about each word for that long.

I have always tried to find the right balance between melodrama and a cautious indifference. Depending on who I was talking to, I would adapt the way I spoke about cancer. I would speak about it freely with a couple of friends. I would tone it down for people at work, stressing that it was probably ‘very early-stage cancer’, even before I knew that for sure. I spoke about ‘treatment’ at length, without going into the details. I barely ever uttered the words ‘chemo’ and ‘radiotherapy’, even when I was discussing potential post-surgery treatment. I did not find comfort in the medical terms. Hysterectomy, FIGO stage, adjuvant therapy. They always felt cold, almost too severe for me. I am not a medical professional. If I had not been personally affected by cancer, I probably would not have used these words. By not using them, I was hiding from their reality, and it helped me cope for a while.

I also struggle with tenses. It does not feel like much, but I freeze every time I want to say ‘I had cancer’. Should I say ‘I have cancer’? Should I say ‘I have had cancer’? None of them feel right, and all of them feel right at the same time. I am not out of the woods yet, but I also do not technically still have cancer… Or do I? In my previous article, I typed the word ‘remission’, and only then did I notice that I had completely banished it from my vocabulary. It is an ugly word. It is a word that denotes the limbo I currently live in. Neither ill nor cured. Cancer might still be here, in my body, dormant and menacing, quiet and deceiving. I will try and use ‘remission’ more going forward, because it is the word that defines me best. I will get used to it, I promise.

There are other words that come to mind. I already spoke about the duality of the word ‘strong’, and how uncomfortable it makes me feel. ‘Cured’ is another one of those. ‘Lucky’. ‘Depression’. The list goes on. But there are also words that make me happy (ok, they are mostly the names of baby animals, I will never say no to a discussion about meerkittens and otter whelps).

It is true not just for me, but also for people I talk to every day. I am going to go out on a limb here, and say that I do not think that anyone (apart from health professionals) has said the word ‘cancer’ to me in at least six months, at least in reference to me. And I have discussed it with plenty of people. I have used it myself. I speak to a few of my friends about it directly at least once a week. Is the word taboo? Do people avoid saying it because they are afraid of it, or afraid of how I will react? I will say it here – you can say cancer to me. You can even say it three times in a the mirror – I promise I will not come and haunt you.

People are so careful around cancer patients, worried about saying the wrong thing. But just so you know, there is no need to tread on eggshells around me. You can say anything you want. I have lived through it, there is nothing you can say that will shock me, that will trigger a reaction in me that I do not already trigger in myself twice a day.

Words are a big part of this, but talking about cancer goes beyond just that. It is an uncomfortable topic in general. I will see you at the weekend for a blog about how to make light of cancer – because we all need it sometimes.

Talking About Cancer – Who to Tell

Talking about cancer is scary. It is scary for the patients, but also for their families and friends. Who to tell, how to break the news, what to say, how much of the truth to share. What tone to take, whether making light of cancer is acceptable, how to ask someone with cancer how they are doing. When to speak up, and when to listen. Those are all questions I do not necessarily have answers to, but I will write a series of posts on here about my experience of talking about cancer at various moments of my own journey. And I will start at the beginning, the first question – who to tell.

There are so many different stages to a cancer diagnosis, and what worked for me at a certain point of my journey no longer applied a couple of months later. Sometimes talking will be harder, sometimes it will come naturally. Sometimes I will initiate it, sometimes I will be happy for someone else to bring it up. What worked for me will not necessarily work for someone else, and I am not pretending that the choices I make are the right ones. But they were right for me at the time.

Between the moment I was diagnosed and when the surgery was deemed a success, I tried to keep the news restricted to a close circle. A number of friends, people at work on a need-to-know basis. My immediate family. I deliberately kept it quiet, for reasons that I do not fully understand even today. Did I feel like it made it less real? Did I feel like I was stronger, if some people still saw me as a healthy individual, with no threat looming over my head? Did it simply make me feel better, to be able to have cancer-free conversations with people who did not know? Was I denying the truth, was I protecting other people? Was I protecting myself from being looked upon with pity, with sympathy? Was I avoiding other people’s stories, and personal struggles with cancer? In case you are wondering, the answer to all of the above is ‘yes’. But I know there are many more reasons, which I hope to one day understand.

I told people I felt safe with. People with whom I felt like I could be vulnerable, which does not come easy to me. My mum, because despite the fact we are not close by any means, she remains my mum. She may not know much about my life, but she remains the person who knew me best for years. My friends, some of whom I have known for over ten years, some of whom I met only a couple of years ago. People I know will have my back, no matter what, but people who are also strong enough to take the news. I told people who, whether I had known them for a long time or not, knew the current me. People I was still close with – I have older friends who I did not tell because we had not been in touch for a few months or years, and I did not want them to think of me only as Lauriane, the cancer patient. But I was also careful to only tell people who I thought would not resent me for forcing these news on them, for making them a part of something they had not asked for, and did not deserve. There is a real fear about it being too much. About the fact that when you tell someone, your cancer becomes part of their lives. I worried about how the news might affect some of them emotionally, personally. It is a burden that I would not wish on anyone, but I also could not keep it to myself entirely.

I told people who asked about why I suddenly looked so sad all the time. People who commented on the fact I had not worn make-up for days, people who noticed something was wrong, and cared enough to ask questions. They probably were not expecting the answer I gave them, but I could not lie to them. I told people who were genuinely interested in hearing about me.

At work, I told my manager, and my closest friends. And then I extended it to people in my team, people who would be affected, one way or another, by my numerous appointments and absence following surgery. I was careful, very careful about who I spoke to. At work especially, I did not want to look vulnerable.

It was hard to navigate situations where some people knew, and some did not. It made things awkward, both for me and for them. I remember an evening, four days after my initial diagnosis. It was one of my friends’ birthday, and his girlfriend had organised a surprise party at a nearby pub. They knew, along with another couple of friends there, but I was not close with the rest of the friends they had invited. I debated for a while whether I should go or not. I did not feel like going, but I had wondered if maybe it would help me banish cancer from my mind, think about something else for a while (spoiler alert – it did not). I decided to go, and it was one of the most awkward experiences of my life. Pretending everything was fine, in front of people who knew and others who did not. Having secret conversations in a corner of the bar. Being asked how I was doing in a carefree way, and lying, with tears in my eyes, in front of people who were watching me carefully.

This continued over the next few months, until the operation and until the final staging. I was choosing who to tell and who to lie to. I told people that they were free to discuss my situation with other people, but still kept a list of who knew and who did not. I kept that list for months, adding names to it, making my diagnosis more real with each new entry.

It felt very much like every single conversation I had with someone who knew had to be about cancer. I struggled to talk to them about anything else, because cancer was pretty much the only thing on my mind. When I spoke to people who were not in the know, it felt refreshing. I finally allowed myself to talk about something else, and I did not feel guilty. Yes, I was hiding a part of my life, but it made sense. I was keeping things separate. There were people I could talk about cancer with, and people with whom I had to push cancer at the back of my mind, and talk about something else.

After treatment, as the months went by and my new reality set in, that I had been a cancer patient but was now in remission, I started being more open about it. It was no longer such an immediate threat, so I felt like I could talk about it more openly. It did not hurt as much, I no longer cried every time I told someone new. I started mentioning ‘the health issues I had last year’, or ‘when I was on sick leave for a while’. To some people, I told the whole truth. To others, I just said I had been unwell. There was no pressure anymore.

It finally felt like I could have normal conversations with people who knew about my cancer. Yes, they knew, and I could slip something in here and there, but we could also discuss other things as well. We could discuss them, which made me feel great. It was no longer all about me. I was no longer as selfish, only able to talk about myself and my own problems.

When I decided to start writing this blog, and posting about it on social media, it was a very conscious decision. It took a while for me to go from ‘writing for myself’ to ‘writing so other people can read it’. I only did it once I felt ready for people to know.

But in a way, a blog is safe. Only people who really, genuinely want to know about me and my struggles will click on the links, will subscribe to know when a new post comes out. It does not feel like I am pushing my story onto others, like it would if I was simply lying this all out on social media. I know the people who will read this are interested, and it helps me be honest. It makes me feel I am talking to people who want to know, rather than forcing them to listen to me.

In real life, I struggle with what to say to people I have just met. In a way, Covid has helped, as I have not met as many new people this year as I usually would. I will sometimes mention a hospital appointment, the fact that I was not able to go home last Christmas. I have not told people directly for months now. Will I ever be able to?

I worry about future relationships. About meeting someone and having to disclose this information. When do I do it? When do I reveal the truth? It is not something I can hide, as it will affect me my whole life. When do I tell them I cannot have children, when do I tell them I am still living in limbo for the next four years, whilst I am still in remission?

I know there are people who I will need to tell in the future. People who will be affected by my experience. Will I come out and tell them directly? Will I just add them on social media and let them discover the truth for themselves? Will I bring it up in the middle of a conversation, or will I sit them down to talk about it? Will I let it slip by accident, or will it be deliberate?

I guess only time will tell.