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.

If I Be Weak

This is how the chorus of one of my favourite songs goes: ‘If you be weak / Then I’ll be strong / When the night is long’. Later on comes the counterpart: ‘If I be weak / Won’t you be strong / When the night is long.’*

I used to listen to that song a lot, back in my late teens and early twenties. I listened to it with the arrogance of youth. I did not understand how someone could be both strong and weak at the same time. In my head, I was and would always strive to be strong, to be the one comforting everyone else. I was able to carry the weight of the world on my shoulders. I liked to pretend that the second chorus, that question about whether someone else would be there if I broke down, did not exist.

I had very old-fashioned ideas about what strength was. For me, strength had always meant not showing vulnerability, being reliable, being able to prove myself, rising to the challenges thrown my way without ever admitting how much effort it took. I spent years and years trying to prove I could do everything by myself. Being strong meant doing everything, and doing it well. I am highly competitive, and I have always strived to be the best at everything I did – giving up things that I enjoyed but had no natural talent for because I would not ‘win’, be it against myself or someone else.

I have spent the last thirteen months (happy thirteen-month anniversary to me – officially my third-longest relationship ever!) constantly oscillating between wanting to show how strong I am, how I am keeping it all together, and wanting to break down, to admit that I am weak and need other people to help me stand. It is a real balancing act. I want people to see me as someone strong, secure, reliable. But I also want them to see the cracks and acknowledge they exist, even if it makes them uncomfortable.

Some people acknowledge this weakness. It is the only thing they see. I had that revelation just a couple of weeks ago, when I received a letter from the GP advising me to call and schedule an appointment to receive the flu vaccine. I had received another one a couple of weeks earlier and ignored it – not on purpose. I simply forgot about it, because of how ludicrous it felt. After all, I am 28. I have never struggled with the flu – I get it every couple of years, spend a couple of days in bed with a fever, and have aches and a bad cough for a week. And that is it. Why would I need to have the flu vaccine? Surely other, weaker people could benefit from it more.

And then it hit me. Doctors see me as a person who is at higher risk. In their eyes, I am one of those weaker individuals. I need to be protected, to avoid adding to the numbers of hospitalisations over the winter months. I am not a normal 28-year-old anymore. I am different than I was eighteen months ago, when I was a healthy individual, for all intents and purposes. (Well, it is either that or the NHS spent so much money on getting me cured of cancer, they would be pretty pissed off if I then died of the flu) And so I booked an appointment at the GP, and I finally got my flu shot. My arm has only just stopped hurting. 

But that is just one point of view, the one of health professionals who know one aspect of my life only: the one where my body has let me down. Not everyone sees things that way.

The thing that makes me the most uncomfortable is hearing people tell me how strong I am. Of course, it is a perfectly standard, commonplace thing to say to people who have had cancer. If you have ever said it to me, please do not feel bad, do not feel like you did something wrong. I have said it to many people in similar situations. I will probably say it to others in the future. But it makes me cringe every time, and I want to be open about it.

Hearing that feels both like a compliment and a slap in the face, a duality which is exacerbated by the fact that I am responsible for people thinking of me that way. After all, I am the one trying to project that image, and still I am the one cringing when people recognise it, I am the one feeling sick, like I have been telling a lie that people believe. To quote a phrase that I have been using in every blog post so far – it makes no sense. I am happy to hear that people feel that way, see me that way. It makes me proud, it makes me feel like I am not as much of a failure as I feel most days. But it also hurts, because it feels as if they do not see how much I am struggling. They are ignoring my pain, ignoring the fact I was not cured with a simple snip of the scalpel, that it does much deeper than that. It feels like they will not allow me to be weak, they will not allow me to tell them I am not coping. Instead, I feel like I need to keep pretending, again and again. Keeping up appearances, forever.

But it is ok to be weak. It is normal. It does not mean I cannot be relied upon.

I remember when I first told my team at work. There were tears, there were words of support. But over the next days and weeks, I realised they had started avoiding telling me about their problems. They wanted to spare me. They wanted me to focus on my own issues, they felt like their work wobbles, their doubts, their personal troubles were somehow less relevant now. But it was not the case. I still want to be able to help and support everyone. My team need me. My family need me. My little brother needs my shoulder to cry on, he needs my enthusiasm, my support, my help to prop him up during a difficult time in his own life. It is a struggle, because I only have so much energy and emotional capacity, but I like it. I like knowing I will be there when they need me. ‘If you be weak, then I’ll be strong / When the night is long’

It is very contradictory. I do not want people to treat me differently because of cancer, but I also do. When I let people in, when I tell them about the last year, it is not because I somehow want them to feel bad for me. I do not want, I do not need their pity. What I need is for them to understand that, despite everything I show the world, I am also weak, and I need them to be strong for me. I need shoulders to cry on too. I need support. I need to be allowed to be weak. I need to know I can let go, and that things will not fall apart when I do. I am a broken vase that has been hastily put back together. I am vulnerable, but I still hold my shape. I need you to be there, super glue in hand, for the next time a crack opens up, and water starts pouring out. ‘If I be weak / Won’t you be strong / When the night is long’

*Armistice by Patrick Wolf. A masterpiece that has been playing on repeat on my phone and in my head since 2011.

Survivor Guilt and Impostor Syndrome

All cancers are not equal. That is a terrible thing, but that is the reality of it. Some are more deadly, some are tougher on the body. Some are quick, some take years to develop. Some are common, some are rare. Some are caught early, and some are never caught. I was one of the lucky ones. Womb cancer grows slowly, it is usually discovered early, and it can often be treated successfully with surgery, with or without the need for adjuvant therapy.

My final diagnosis was of endometrial adenocarcinoma, Stage 1a, Grade 1. After the operation, I was not encouraged to have any further treatment, as the risk of recurrence was quite low. That meant no radiotherapy, no chemotherapy. Other than the mess that is my head at the moment, the only proof I have that I had cancer are four small scars on my lower abdomen (unless you have an MRI machine at home – then I can show you I have organs missing from my body). Four small scars, only a couple of centimetres long, purple against my terribly pale skin. They will fade in time, and will no longer be so visible.

I know I am incredibly lucky. But there is a part of me – a part that I despise, and that I wish I could get rid of altogether – that feels guilty about this. That feels like I did not really have cancer, that I am claiming to be part of a group where I do not belong. My experience was so easy compared to others, it should not even count. I have no right to claim I am a cancer survivor.

I had been told that, after the results of the surgery came back, there was a chance I would need radiotherapy, even just as a preventative measure. So I had read all about it, and prepared myself for it. I had been ready for the doctor to tell me I needed a few sessions, I had researched how it would work, informed my manager of the possibility. When they instead told me they did not recommend any further treatment, and that the grade of the cancer was actually lower than they had initially assumed, I felt a huge sense of relief, which was immediately followed by a feeling of unease. So that was it, for now at least. That was my whole experience of cancer treatment, and it did not match what I most associated with cancer. No chemo, no radiotherapy. Without that adjuvant treatment and the risks and side-effects associated with it, I feel like I cannot claim that I have lived through a real, valid cancer experience. I feel guilty telling people about my cancer, I feel guilty of now having anxiety, depression and PTSD, when my experience was so much easier than most people. I should be glad, and I should be thankful.

I cry about it. I make myself sick when I think about it. I feel like I have no right to talk about these things, that it is not my place. I feel like I should not be struggling, it is shameful of me to complain, to feel bad about my situation, when so many other people have it much, much worse. Even writing this blog makes me feel guilty. Do I have the right to speak about this? Do I have the right to feel low, when people are grieving their relatives, when people are losing their lives to this awful disease? I did not even want children, so the loss of my reproductive ability is nothing compared to women who have always wanted children and have had that option ripped away from them. There was very little sacrifice on my part. I had it easy.

Those are all thoughts I have, maybe not every day, but at least a couple of times a week. There are words for them. Impostor syndrome. Survivor guilt.

I always worry that people are going to judge me if I say I suffered because of cancer. After all, all I needed was a quick operation – an hour and a half, snip snip, all done, goodbye cancer. Yes, I have follow-up appointments. Yes, I will be monitored for at least five years, to make sure the cancer does not come back – or catch it early if it does. But all that does not equate the pain and suffering of people with other forms of cancer, or more advanced disease.

I am afraid that people are not going to believe me if I tell them I had cancer a year ago. I am afraid of their reaction, of the fact they might judge me, and refuse to believe me because I show no exterior sign of having, or having had cancer at all. After the operation, when I first took public transport, I was afraid to sit down in a crowded train. I was afraid of the looks I would receive – me, a seemingly healthy woman in her twenties. I was exhausted, I was barely standing up, but I was afraid of people not realising that I was seriously ill, and judging me for taking someone else’s spot.

I always used to associate cancer with chemotherapy and hair loss, but all I needed was surgery. I kept all my hair (until I decided to cut it all off, before shaving half my head). It is something that still bothers me. I did not have the cancer experience that, for me, is the very definition of the disease. Did I even have cancer, if my experience was so easy, so short? Was my life really in that much danger, was it really overturned by the disease? Have I made it much bigger in my head than it was? Am I entitled to request help? I have a medical exemption certificate, which means I do not have to pay for my prescriptions for five years. And every time I use it, I feel guilty. Surely, there are people who need it more than I do, people whose body, whose life, whose livelihood have been affected by cancer a lot more than I have.

I sometimes feel like I should keep quiet about my mental health struggles. More than seven months passed between the moment when I first started feeling anxious and depressed, and when I finally spoke to my cancer team about it – and even then, it was only because I had a full-blown panic attack at my hospital appointment that I spoke to someone. In that moment, I was not able to hide it, to pretend everything was fine. If I had not been overcome by anxiety at that point, I would not have said a thing. After all, I am managing. I am living my life, I am still functioning. I go to work, I earn money, I pay my bills. Surely, I am not that ill. If I manage to do all this, surely I am fine, it cannot be that bad. Despite all the reassurance I have received from doctors, from my CNS, I still feel like I am wasting their time. There are people that are suffering more than I am, and they need their time more than I do. I am claiming help that I am not entitled to.

I read stories about people with cancer. I hear my friends talking about their family members, their own friends. I have lost people to cancer myself. I have family members currently undergoing treatment for advanced cancer. People who know there is very little hope. And I feel guilty. Why was I so lucky? Why did I have it so easy? And why, why do I not feel relief, why do I not rejoice in the idea that I am, as far as my doctors can tell, cancer-free? It is unfair.

I have not joined any support groups. I am afraid of being faced with people whose experience was a lot harder than mine, afraid that this will invalidate my own story. Afraid of the looks on their faces when I claim being one of them, when I know so little and have suffered a lot less. I feel like I do not belong, because of how easy I had it.

Every time I upload a new blog post, I have this ache in my heart, in my stomach. I worry about people reading this, and feeling like I am cheating. Like I am discussing things that I do not know. I am afraid they are going to see me as a fraud. As someone who is taking advantage. As someone who is claiming distress that they are not entitled to.

I have not spoken of this to anyone before today. Not to my doctors, not to my nurse, not to my family, not to my friends. I was editing a completely different article last night, which I was planning on publishing today, when I typed the title for this one. And then I could not stop writing, the words pouring out of my fingers and onto the page. I finished at 3am, long after the fireworks of Diwali had stopped.

One Step Forward, Two Steps Back

Getting better. That has basically been my only goal since I first received my diagnosis last year. Everything else, life, friends, relationships, work, the future, it all took a step back, to allow me to focus on this one thing. Getting better is the aim, after all.

I always pictured my experience as a hurdle that I would need to pass. After that, life would start again, it would go on, I would be on a clear path to getting better and back to normal.

But as time goes by, and I start having first-year anniversaries of all the significant milestones of my diagnosis and treatment, I realise that getting better is not a straight line. It is full of curves, of hills that I thought I could not reach until I conquered them, of slopes that are too steep, too fast for me to go down safely. It is not an easy path.

There have been milestones throughout the year. So many moment where I thought ‘I have done this, now I will be fine’, only to reach a new low after a few weeks.

There was the operation, on 19th December. The day they told me the cancer was confirmed as Grade 1, Stage 1a, and no further treatment would be needed, on 13th January. The day I was prescribed hormone replacement therapy, on 26th February. The day I received a letter telling me there was no sign of a genetic mutation, sometime in late spring. The day after my first in-person follow-up, on 28th August. On those days, I felt relieved. I reached a new high each time. I felt like nothing could touch me. Depending on the appointments, I had been reassured that I was doing ok physically, or at least that things would start looking up.

But because there are highs, there are lows too. And every time I feel great, I know now that it is not going to last. That no matter what I do, there will be a point where I feel anxious, where I feel low, where I feel down again.

It can be overwhelming, this feeling that whatever you do, there is no progress. I am stalling. I am wary of even thinking things are fine, because I know there will come a time, pretty soon, where I will struggle again. I am afraid of getting my hopes up, because I fall harder every time.

I am at that point again, two months after my latest check-up, and a month before the next one, where I start panicking again at the thought that something might be physically wrong with me. That the cancer is back. I have nightmares about it. I wake up thinking about it. I go about my day, and I think about it every minute. I try to go to sleep, telling myself that I am another day closer to receiving bad news again. It is completely irrational. I know the chances of it happening are very low, but I cannot control it. I have tried CBT, I still try and undo this negative thinking pattern, but it all-consuming.

I feel anxious, and I feel low. Because so much of my energy is focused on this, I feel tired all the time. I feel unmotivated. I do not have the energy to do anything. I try reading a book, and I have to give up after two pages, my brain will not let me focus on it. I will watch a film and switch after ten minutes.

I feel all the emotions, all at the same time. I feel sad. I am downhearted. I feel angry. I am frustrated. I cry. I am mad, and I slam on my keyboard. I swear at myself, I swear at clients, I swear at my friends – but only in my head, and in my flat.

What I thought helped does not anymore. I thought that yoga helped me relax, and now I just cry at the idea of lying down on my mat. I thought medication was working, but I feel worse than I did weeks ago. I started doing crafts again and thought I had found my focus again, but I have to force myself to pick up my knitting needles at the moment. I thought that writing had really helped, that it had allowed me to put words on my feelings, that I was seeing the light again, only to realise that I have taken a huge step backwards, and I am now back where I was six weeks ago.

It is disheartening. I keep feeling like things are looking up, only to be disappointed again. Disappointed in myself, both for letting myself feel like this and having had the hope to think that maybe, it would not be the case this time.

It is a pattern I will have to get used to. Triggers that I will need to identify, and can prevent before I fall into a downward spiral again. What started it this time? I cannot pinpoint a single factor. There are a multitude of reasons, some more personal than others. Cancer anxiety. Family issues. Politics. Workload. Lockdown. Worry about not being able to finally go home at Christmas, and see the family and friends I have not seen for over a year. Watching my friends achieving things, reaching their goals, whilst I am still here, stuck in my post-cancer rut, unable to move on.

Thirty days until my next appointment. I know that if everything goes well, a new high point awaits me on the other side. And it is higher, better, deeper each time. I will feel happy again. I will feel like I am back to normal again. But if you are looking for me in the meantime, I will be hiding under a blanket with a Christmas-scented candle burning next to me.

A Creature of Habit

I used to be the type of person who was always up for something new. Sure, I had my favourite books, which I re-read once a year, my favourite films, which I would watch curled up in bed when I had a bad day. But I would rejoice in discovering something new, in watching something with the hope of being pleasantly surprised.

I cannot do that anymore.

In the last twelve months, I can probably count on one hand the number of films I have watched for the first time. For every single one of those, I read the plot first, I researched the synopsis, I looked for a detailed summary, I searched for spoilers.

Instead of starting new TV shows during lockdown, I have re-watched the same ones, again and again. I call them my little obsessions, and watch the same episodes several times over, sometimes in a different order, sometimes restarting series from the beginning. I know exactly what is going to happen. I find comfort in the lack of surprise.

I have read the same books over and over again, so much that I got sick of some of my favourites. So I bought new ones, and I jumped straight to the end and read the last few pages before coming back to the beginning.

What am I afraid of? Everything.

I have never liked surprises. I have always delighted in reading spoilers on purpose before watching the new episode of a TV show (except for that episode of The Good Wife – I was not ready). But I used to like finding new, exciting stuff to watch, new authors to follow.

Now, I am afraid that something, somewhere, will be a trigger and send me into a dark place. I try, sometimes. I watched the new series of Queer Eye in the spring, settling on the sofa with my coziest blanket and a cup of tea. It is one of the most heart-warming shows ever, and I had loved the previous series. There are a number of episodes that I still watch when I am feeling down. But I was not able to enjoy the new series. Every minute, I was afraid someone was going to mention their experience with a life-threatening disease. Terrified that I would be able to relate, that I would see my own experience on TV, see what my family might be going through, what could have been. Convinced it would send me in a world of tears and anxiety if it happened – and it did.

Whenever I watch something new, I am on edge. I cannot relax. You never know when a trigger is going to appear. I do not even know what all my triggers are. Sometimes, it will be a character talking about having lost a child, and my brain will start going crazy, imagining what my parents could have felt like. Some other times, it will be someone mentioning how they got their scars, and I will think about mine, about having to explain to someone how I got the four purple lines on my stomach.

Some triggers are both obvious and insidious. I was reading a new book the other day, something that was supposed to be short and light-hearted. I did what I always do, read the summary, read the ending. All seemed fine. So I started, and halfway through the book, it was revealed that the main character had had cancer, and had turned her life around after getting better. That was a punch in the gut. It was not the main plot point. It was in the background, it was a way for the author to justify the character’s anguish and struggles. But it moved me to tears, and all I could do for the next couple of hours was curl into a ball and wait for it to pass, taking deep breaths, trying cognitive behavioural therapy and only getting more frustrated when it did not work.

It is exhausting, to constantly be on the edge, to know that you might break down at any moment and be terrified of when it could happen. It takes so much energy, so much brainpower. And it is physically draining too – my whole body tenses up, I grind my teeth and do not breathe correctly. It is impossible to relax.

I have developed obsessions, because they are comforting. They allow me to feel safe, to feel protected. To have a break and to escape, if only for a few moments, the ‘deep, aching sense of dread’, to quote a line from Schitt’s Creek. No matter how many times I re-watch that gem of a show (and trust me, it is close to a dozen now), I know how it is going to go. I know where I will laugh, where I will cry, where I will love. I will know the lines, I will be able to anticipate and prepare myself for the feelings that are to come. There a lot of triggers for me in there, so many moments where I shout at the TV ‘that’s me!’ – usually when someone is being overdramatic for no reason at all. But I know they are about to happen, and I am ready for them.

I have read each of The Dharma Bums and On The Road twice since the beginning of the year. It brings back happy memories, it brings back moments of my life where I felt like nothing could touch me, where my biggest worry was whether I would be able to finish my essay in time to go out with my friends. I read Harry Potter again in the spring, because of how safe it felt.

I know I should try and widen my horizons again. I cannot keep watching and reading the same things over and over again. So I will give it a go every now and then, but always with the same care – read the plot summary, try and know of any major spoilers before I make a start. Get a feel of how it might affect me, so I can make sure I will not break down when the time comes.

I have tried asking recommendations from friends, and getting details out of them before I start reading or watching something new. It is hard, because small details which they might not notice will send me over the edge. I struggle putting my triggers into words, so I cannot ask them exactly what I need to know, what I need to avoid. It is also not fair on them – I do not want my friends to focus on my issues when they are relaxing.

It will probably take quite a bit of time for me to feel comfortable discovering new stories. In the meantime, there is an old season of Gilmore Girls calling my name.

The Language of Trauma

I was a very late bloomer when it came to talking. If you believe my mum, I did not start speaking until I was almost three. I apparently had too many other things to do, like climbing fences to jump into pools and running away on supermarket car parks (both of which happened on several separate occasions). Clearly, words were not my priority back then.

French is my first language, and for almost nine years, it was the only language I could speak. In my second-to-last year of primary school, I was given the option to start learning a foreign language. It was the first time they were going to offer to teach languages to our year – up until then, only pupils in their last year of primary school had been allowed to learn a language. I was very excited – my older brother, who is two years older than me but was only a year ahead in school, would be starting at the same time. I have always been very competitive, and I loved the idea that there would be one thing in which we would both be at the same level. We did not have much choice, our school only offered English and German. My brother picked English. Because I was a very contrary child, and I had heard that German was much harder to learn, I chose German. Twenty years later, I still cannot resist a challenge.

I loved German lessons that first year. Because so few of us had chosen German (English was the overwhelmingly popular choice), we were all together, last-year pupils and younger ones like me. I was having lessons with some of my brother’s friends, and I felt like I had finally reached his level. To be honest, I had even surpassed him – German was harder, so I had basically won. I loved German, but my parents were pushing me to switch to English, as they believe it would be much more useful.

At the end of that first year, I made the choice to quit German and start English instead. That would mean that I would be behind the other pupils when school started again in September – they already had one year of English under their belt, and I did not.

I do not know if I had a gift for languages back then or if it was my competitive spirit shining again, but after a few months, my level of English matched the ones of my friends. By the end of the year, I had won the English language challenge set by the school, and was given my very first French/English dictionary as a prize. I put it on a bookshelf at home, and did not pick it up again for years.

In secondary school France, you usually study only one foreign language for the first two years, and then start a second foreign language in your third year. The secondary school I went to offered to study two foreign languages (English and German) from your first year – it was part of a short-lived attempt at getting more French people to study German. My brother had only studied English (with the aim of picking up Spanish in his third year), so I obviously decided I would outdo him and join the double-language course.

For years, my German and English were pretty much on par with each other. When we had to declare a ‘main’ foreign language, I chose English, encouraged by my parents. I liked English classes, but it was not until my first year of the equivalent of sixth form that I truly fell in love with it. I had an amazing teacher that year, who was in his very first year of teaching English. He had a passion for the language, and for making us read and write, instead of asking us to learn grammar and lists upon lists of words. I started reading in English, first books and then way too many Harry Potter fanfictions.

That year, I decided that, despite having chosen a science-laden course in sixth form, I wanted to pursue arts and literature at uni, and more specifically English (by that time, my German had become much weaker). After graduating, I chose a language course and, one thing leading to another, I ended up with a master’s degree in translation, with a very marked preference for English.

Two days after my course ended, I moved to the UK and started my new job within a week. Since then, my English has improved a lot (at least I would like to think so), and has replaced French as the language I am most comfortable in.

I do not consider myself bilingual. I think you can only be truly bilingual if you grow up surrounded by two languages, and learn to use them at the same time, so you have similar relationships with both languages. I grew up learning French and for year, English was a language that only applied to specific contexts, like classes, work and dissertations.

I started dreaming in English halfway through uni, but it was always in dreams with an English background. I would dream of something happening in the UK, or in English class, etc. It was not until a couple of years after I moved to the UK that English became the language that I think in. When I talk to myself (and trust me, that happens a lot), it is now usually in English. I swear in English, I cry in English, I work in English. I read almost exclusively in English, I watch TV in English. I cannot remember the last time I read the news in a language that was not English.

As the years went by, I started struggling more and more with French. Phrases, specific words, I keep forgetting them. They sound foreign to me. My phrasing is ridiculous – I use English sentence construction and just use French words instead of thinking of the actual French phrasing. I speak proper French in two contexts: when I speak to my parents, and when I work with French clients (although I still have to double check what I write to make sure I have not used any English).

I am lucky enough that most of my friends from back home are fluent in English, and do not mind me using a mix of French and English when talking and writing to them. To be honest, I switch between the two depending on what comes naturally at the time. I will often start a sentence in French, and finish in English. I will use English words in the middle of a French sentence, and will react in English to their French messages.

I sometimes struggle to identify the language I am reading in, or confirm whether I just used French and English. Honestly, it is not great when part of my job is identifying source languages in documents my clients send. I will confidently start working on scheduling a French to English translation, only to have the translator ask me to confirm what I need, since the source text is already in English. Sorry, my bad.

My English is not perfect, but it has become the language of my daily life.

What I never imagined that there would be things I would only ever be able express in English.

I have been asked about my decision to write this blog in English. Was it a conscious decision, was it done in order to increase readership, to give it a better chance of becoming viral? Absolutely not.

English has clearly become the only language in which I can think of my experience, and the only language where I can express my feelings.

There is a reasonable explanation for it. After all, I got my diagnosis in the UK, all my consultations were conducted in English, all my phone calls and appointments were in English. The words the doctors used, I only knew them in English at first. Everything was explained to me in English. Everything made sense – as much as a cancer diagnosis at 27 can make sense – in English.

I never had any issues understanding what the doctors were saying in English. My issue was communicating the same in French.

I struggled speaking to my parents about it, struggled to explain what was happening. The details, but also the bigger picture. I had to look up words in the dictionary, I had to read medical articles in French in order to find the French way of saying what was happening to me. It was not easy. They tell you you should avoid googling your condition too much, that it is only going to add to your anxiety. But I had no choice. I had to do it, in order to be able to tell my family about it.

As a result, I know everything there is to know about womb cancer in both languages. It does not mean I feel comfortable talking about it in French.

A few months ago, a friend made me realise that, even though I spoke to them in a mix of French and English most of the time, I automatically switched to English only whenever I spoke about cancer.

In my head, it is very clear – cancer happened in English. The language of my trauma is English. Is that a way to detach myself from it?

I am very much of the opinion that I have two very different personalities. French Lauriane is self-conscious. She can be moody, tough and sarcastic. She had to tell people ‘that’s just my face’ when they ask her if she is mad. She is pessimistic, she does not play well with others. English Lauriane is more confident. She is more resilient, she has been through a lot, but she is also more open. She is bubbly. She is invested. She says please and thank you. She will smile and give you a hug if you need one. French Lauriane would run away.

It is quite common amongst people who speak several languages. For me, I believe it is also related that there was a clear cut between my life in France, as a child, as a teen, as a student. The moment I moved to the UK, the moment English became my main language was when I became a proper adult.

Because I have these two identities and they are very separate in my mind, I feel like cancer only affected a part of me. It struck English Lauriane, but she can take it. She is positive, she can get through a lot. She has learnt to deal with it. The French part of me was always here, in the background, but separate. Detached. It was not her language, it did not feel as real. A part of me is safe from it, protected by the language barrier.

Whenever I think about cancer, I think in English. I have flashbacks in English. I have panic attacks in English.

I did not realise how obvious that was for a long time. I was speaking about my mental health struggles with a friend, who mentioned finding a French-speaking therapist in the UK. And immediately, my reaction was to say no. If I ever was to share my burden with someone, to find a way to deal with it, it would be in English. The part of me that is broken is the part that speaks English.

But that is also the part of me that feels strong enough to get over it. The only part of me that can express feelings. I have never said ‘I love you’ in French. I have never said ‘I am scared’ in French. I have never said ‘But what if I die?’ in French. Do I feel comfortable doing it in English? Absolutely not. But I have.

Would I technically be able to speak about it in French? Do I have the words for it? They do not come naturally. French might be my first language, but my fingers do not fly across the keyboard as fast when I write in French. I feel free writing in English. There may be mistakes, there may be typos, but it is the language in which I can talk about fear, about depression, about anxiety. Feelings are stronger in English, and they are bubbling inside me, waiting to be put on paper.

There is a story I like to tell. It is about the operation, but it is a fun one.

For weeks before the operation, I joked with friends about not knowing what language I would speak when I came to, when I woke up from the general anaesthesia. You know, these stories about people who have been in horrible accidents, who wake up and have forgotten their first language entirely, or suddenly speak Chinese despite never having studied it? I laughed and told my friends my mum might need to call them to understand what I was saying, if I ended up only able to speak English. Or maybe, I would only speak French, and the doctors and nurses would try and explain things and I would blink in confusion and have to request an interpreter (good thing I have contacts in the business!).

I do not remember much from the first few minutes after I woke up, but I remember my mum looking at me and questions which I answered with confidence, only to see a puzzled look on her face. Apparently, I woke up speaking English, and it took more than half an hour for me to start speaking French. I understood what my mum was saying perfectly, but the words coming out of my mouth were in English and I could not articulate them in French.

Is it a coping mechanism, a barrier that I have built in my mind, which I will ultimately need to take down in order to make peace with what happened? Was it a safe place for me to store my experience, whilst protecting a part of me from the truth? Will I ever be able to express myself in French?

English is the language of my experience, it is the language of my cancer, the language of my trauma. But it is also the language of my hopes and dreams.

From Diagnosis to Surgery – Part 2

After the surgery was cancelled, I probably hit one of the lowest points of my life. I was completely spent, both physically due to the lack of sleep, and emotionally due to… Everything.

I had marked the day in my diary. I had really focussed all my energy on holding up until the third of December, on pushing all my feelings aside, on staying strong. And when that day turned out to be just another day of limbo, another day where I still had cancer, I crumbled.

The day after the cancelled surgery, my father left. He was concerned, but I kept reassuring him that I was going to be fine. What I really wanted was to be alone, to lie in bed in the dark and wallow. I had never been one for wallowing – I am usually restless, and the thought of doing nothing gives me anxiety. But for the first time of my life, I wanted to do nothing, think about nothing and just let the hours and days pass.

I had to call work, explain what had happened. I actually cannot remember how I did it. Maybe I emailed my manager, maybe I phoned her – I have absolutely no recollection of that. All I remember is her telling me not to come into work that week, but to stay home and take care of myself.

I did not, not at first. About an hour after my dad left, my phone rang. One of the doctors on my team, the one who had been with the surgeon the day before, was calling to ask me how I was doing, and to confirm the date when the surgery would finally happen. I apologised for breaking into tears and falling apart the day before, I apologised on behalf of my father for him having lost his cool, she apologised on behalf of the hospital for not having been able to perform the surgery I was so looking forward to.

She reassured me that nothing would change in the two and a bit weeks until the new surgery day. The cancer would not grow, it would not spread, the prognosis would not suddenly worsen. I felt like I could breathe a little bit better. But then she stopped, and told me that unfortunately, I would have to have another MRI.

They cannot, or will not, operate on a patient without an MRI dated less than six weeks. Mine expired two days after the date of the original surgery. Delaying it by two weeks meant I would have to take another one. Just that thought made me lose it again altogether. I was in tears on the phone, I could not wait to hang up and slip under my blanket again. She told me I would receive a letter informing me of the appointment for the scan, and that she would see me a couple of weeks later.

Despite her reassurance that everything would be fine, that it was unlikely that the cancer had spread further, I was terrified again. In my head, there was still a chance the new MRI would show some significant change. A part of me understood that it was a just formality, that it was something they had to do to comply with their stringent processes, not because they were particularly worried. But another part of me was convinced that if they needed a more recent scan in order to carry out the surgery, it meant that there was a possibility that things had changed. And knowing my luck, the odds would be that it had gone against everyone’s expectations, yet again.

I spent the rest of the week at home, watching TV shows and doing the Christmas crafts I had planned for my recovery. On the Friday and Saturday, I went to the gym a total of five times. I had had a sudden regain of energy, and I could not sit still. And then, it was time to go back to work for the last ten days of the year.

It felt wrong to be back at work, but it felt good to be able to focus on something. I fielded questions about why I had been away the week before, and why I was back when I had told everyone I would be away for the rest of the year. My mind was half there, half on the surgery – the one that was cancelled and the one that was still to come.

The MRI was scheduled for that week. The friend who had been coming to most of my appointments drove me there again – another nice little trip to Oxford. This time, it took three members of staff and 30 minutes to locate a vein and place a cannula into my arm to inject the muscle relaxant and contrasting agent needed for the scan. It took so long that when I emerged from the prep room, my friend thought we were done with the MRI and got up. But no, they were simply taking me from one end of the ward to the other to carry out the actual scan.

No music this time – different hospital, different processes. I had earplugs. I closed my eyes, and in I went. Each cycle of the machine to take a scan seemed to last longer than the last. I felt nauseous, I had trouble breathing but they kept telling me to try and stay still, to breathe as calmly as possible so as not to blur the images. Finally, someone came into the room to let me know I was done. I turned around and sat up, putting my feet on the floor. I felt faint as soon as I started standing up, and had to sit back down. They tell you that you should not drive for an hour after being injected with muscle relaxant. I do not know if that was linked, but it took me over five minutes to be able to get up and walk back into the waiting room.

The next two weeks went by very slowly, and extremely fast as well. Work was busy. I managed to attend the Christmas party for our whole company, which is usually a huge bash that I barely remember the next day. This time, I was not drinking, but it went by in a flash. I was the sober friend dancing the night away.

At the weekend, I met up with a group of friends and went to the Oxford Christmas market. It felt almost incongruous to be in Oxford for something that was not cancer-related. It was all I could think about. There, in the midst of my friends who were chatting about their Christmas plans and theirs wishes for the New Year, I felt out of place. I felt so detached from everything that was happening around me. It felt like I was watching the world go past, do its own thing, and I was just there, witnessing it all without taking part. I did not know what my Christmas would be like, nor did I know what I could expect for the months and years to come.

My mum had made plans to come and stay with me for that second surgery. She would then stay all the way through Christmas, when my brothers would join us for a few days, before they all left on Boxing Day. Then, a couple of my uni friends would come and stay until New Year’s Day. It felt good to have plans, to have a schedule to look forward to once the operation was over. I had no idea how I would feel, whether I would be able to walk, but I knew I would have people with me.

The day before the surgery, I was off work again. I met my mum in London – she was coming by public transport, and I did not want to let her loose on the tube – who knows what could have happened. We had lunch in London, and then took the train back to mine. I laughed at how she struggled to walk up the hill from the train station to my place. For over a year, she had made fun of me for being overdramatic about living at the top of a steep hill. Well, that served you right, mum.

I had been told to be at the hospital at 7am, as soon as it opened. I was first on the list for that day, so there would be no delays. We took a taxi to Oxford, I was watching the sun rise outside the windows. We arrived early (very out of character for me), and walked into the hospital. This time, I knew the shortest way to get to the surgery ward. I knew which turns to take, which papers to present to the nurse behind the desk. Christmas decorations were up, and the bell stuck to the front of the desk kept falling to the floor. I picked it up a couple of times whilst we waited.

I was called in for them to check a few details – I confirmed I had not eaten since the previous night, and all I had had for breakfast was a glass of water. They put hospital bracelets on my wrists – the same ones I had had two weeks previously, and which I had torn away from my arms on the way home. They told me the surgery would probably start around 10-10.30, after the surgeon had visited the wards. I spoke with the anaesthetist again – a different one to the one I had seen before. I had to take a pregnancy test – the last one of my life. It felt ridiculous but also so meaningful.

I went back to the waiting room, prepared to wait for a long time. But they called me back in almost immediately, to meet the team that would handle the surgery. This felt like the moment of truth. We were in the exact same room where they had cancelled the surgery before. But this time, it was different. The doctors were not the same. This time, it was the right one. I signed consent forms, I confirmed I understood everything and I was ready for it. And then, they asked me to change into a hospital gown, put on my dressing gown and slippers. I left my suitcase with them and a nurse gave me a bag in which we would put the belongings I still had with me. And then she told me to go back to the waiting room whilst they prepared everything.

I went back and sat down next to my mum. We chatted for a while. It was nowhere near 10am, so I assumed we still had still some time left. But after a few minutes, a nurse came in and asked me to follow her. I turned to my my mum, I did not quite know what to say. The nurse must have understood, because she said ‘Oh, is that your mum? Come on, give her a hug!’.

I am not a hugger. I cannot remember ever hugging my parents – I am sure I must have done but not in the last fifteen years, at least. I hesitated, but then said ‘Oh, we’re not really like that.’ I keep thinking about that moment. My mum probably would have liked a hug, but she did not say it. So I nodded, and probably said something meaningless.

I followed the nurse through the door. I could see someone rolling my suitcase to the lockers where it would stay until I woke up, and I realised at that point that my phone was still in the pocked of my dressing gown. I ran to give it to them – I guess I needed to do one last silly thing before the surgery.

I remember walking down a long corridor, past a number of closed and open doors. They had told me it would be cold but I think the adrenaline running through my veins made it impossible for me to feel it. We arrived into the room where they would put me under. It was not what I expected. There was a hospital bed for me to lie on. Lots of medical equipment. A second nurse, and the anaesthetist.

My memories there are quite vague. They needed to put a cannula in my arm, for administering medications and fluids. I remember telling them about my fine veins, and them saying they would put it in the back of my hand anyway so it did not matter. I remember thinking how odd it was, to have something stuck in my hand like that. Over ten months later, I still have the scar on my hand. It is a tiny, round scar. No-one else can see it, but as I sit writing this, I stare at it. It is the first scar I got as a result of my cancer.

I have no idea how they administered the anaesthetic. They tell you that your brain stores traumatic events away, that you have a selective memory for these moments you could have done without. This is where my pre-surgery memories end.