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.

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.

My Cancer, My Rules

Something happened today.

It was nothing major. It was nothing that had not happened before. But it is something that always makes me terribly uncomfortable, that makes me want to run home and hide under a blanket for a couple of hours.

As a result of my cancer and the surgery, my body is no longer producing the hormones that are essential to women under the normal age of the menopause. Because I was so young when my cancer was caught, and because it was diagnosed at such an early stage, I was prescribed hormone replacement therapy (HRT). Most women who have had endometrial cancer will not be given HRT, as oestrogen can increase the risk of recurrence in many hormone-driven cancers. In my case though, the benefits of taking HRT would far outweigh the risks, so I was offered to start treatment back in February. Since the start of the pandemic, that has meant monthly calls to the GP, who renews my prescription over the phone, and trips to the pharmacy to collect it. I will need to keep that up until I am 51, the average age where a woman reaches menopause naturally in the UK. That is a mere 23 years of treatment.

I am terrible at renewing prescriptions, so I have dozens of alarms on my phone. I miss them, I snooze them, I end up asking friends to remind me to re-order my prescription. It is not time-consuming – usually a 5-minute phone call to the GP and a 3-minute visit to the pharmacy do the trick. Sometimes though, it gets exhausting.

When I rang the GP last week, asking to renew my prescription, the receptionist asked me what medication I wanted to re-order. I gave her the name, and her immediate reply was ‘Oh, if it is for contraception, you will need to speak to a nurse.’ No, it is not a contraceptive – my body took care of that all on its own, thank you very much. ‘It’s not. It’s HRT, hormone replacement therapy.’ A pause. ‘Ok, I’ll speak to the doctor about this.’

It used to be a trigger. The reminder that I no longer need contraception used to drive me to tears. Now, I just close my eyes for a couple of seconds and breathe deeply.

I nipped out at lunch today to go and collect it from the pharmacy I have been going to since my diagnosis. I pushed the door and waited my turn. A few people in front of me, a chatty new pharmacist, it took longer than usual. Since I am not one to make small talk with strangers, I expected that once my turn came, it would be over much more quickly.

I gave my name, my date of birth. And the eyebrows of the pharmacist shot up above his mask. ‘Is it hormone replacement therapy you’re here to collect? Sorry, what was your date of birth?’ I gave it to him again. ‘That’s really young to be on HRT – who have you spoken to about it? Is it your GP or…’

I had just popped out to get my prescription on my lunch break. I was not ready to give anyone my life story.

I get that he was genuinely surprised. After all, it cannot be often that a 28-year-old woman comes into his pharmacy asking for HRT. But the way he said it, it felt like my right to get HRT was being questioned. I felt the need to justify myself, and so I did, feeling terribly uncomfortable whilst uttering the words. ‘Yeah. I had cancer, I had surgery, and I’m now on HRT’, I said it as quietly as I could, mindful of the people who had come into the pharmacy behind me. ‘But did you speak to your GP only, or did a gynaecologist…’ He was not being as careful as me, his voice was strong and loud. ‘Yeah, I went to a specialist menopause clinic.’

I was annoyed, I was ashamed. I am open about having had cancer, but it is my story to share. I write about it on this blog, I tell my friends about it, I have opened up to more people than I ever thought I would, and it is my choice, I do it in my own time, when I feel like it. At 13.20 today, out on my 30-minute lunch break, I was not ready to discuss it. And I was not ready for the people in line behind me to get front row seats to my life story. But I was forced to do it, because of his questions, because of how insistent he was, because I did not have the energy to stand up for myself.

He went to the back to fetch my prescription. From there, he shouted: ‘You are not also taking the patches, are you? Because sometimes they can interact and…’

‘No.’ Just let me pick up my prescription and go, please. I did not say that, but I wanted to run out of the pharmacy and back to the safety of my flat.

‘Ok, so here it is. What dosage are you on, oh, it’s two pumps a day, isn’t it. Oh yeah, I can see there it used to be one, and now it’s two, the prescription was updated… Oh, do you pay for your prescriptions, or do you have an exemption?’

I was about to say I was exempt, when he interrupted me again: ‘Oh, of course, if you had cancer you must have a medical exemption certificate. Let me check, yes, we have it on our system, valid until 2025!’

And once again for the people in the back?

I am a private person. When I decide to open up, it has to be on my terms. When I muster up the courage to tell people I have cancer, it has to be my choice. When I resolve to explain what treatment has done to my body, I want to be in a safe environment, not in a pharmacy, in front of strangers. Even the 6-feet rule does not prevent anyone from hearing what is said loud and clear by an over-enthusiastic pharmacist.

I could not have run out of there any faster. I signed my name at the bottom of the form, ticking the ‘medical exemption certificate box’, took my prescription and made it out within seconds. Was I rude? Maybe.

Mostly, I was shaken. Within ten minutes, I had felt judged, exposed and patronised. I do not need my health, my private life to be discussed in front of strangers when I am picking up a prescription. The people behind me could have been anyone. They could have been my neighbours. They could have been clients, they could have been colleagues. I felt naked, which is pretty incredible considering I was wearing two jumpers, one on top of the other. I felt like I had no control. I started shaking.

I know hearing about my case might surprise some people. They might have questions, they might have opinions. They might want to discuss it at length But it is my life, and I will share it according to my rules. Maybe tomorrow I will pop by the pharmacy again and give that man the link to my blog. If he has any questions, there is a time and place for them.

It is my cancer, and I have earned the right to control my story.

Reclaiming My Body

Surgery took away some of my organs. I lost the hormones I had relied on for years. Cancer started, and spread inside of me for months, possibly even years, and I did not notice. How can I trust this body? How can it ever feel like mine again?

Womb cancer, or endometrial cancer, happens most often in older women who have been through menopause already. The most common sign that something is wrong is unexplained bleeding. Because I was only 27 when I was diagnosed, I attributed any bleeding to irregular periods, which I had had ever since I first went on the pill as a teenager. I had flagged this up to a gynaecologist before leaving Paris back in 2014, and I had been told it was no cause for concern, it was quite common actually. It would take years for me to bring it up again with a doctor, which prompted a series of tests which eventually led to my diagnosis. Along from bleeding, some women with endometrial cancer also experience pelvic pain, which helps them realise something is not quite right. I never felt anything.

I have always had a high pain threshold. And I mean, very high. I once knelt on push pins that had fallen to the floor (I was a messy kid), and only noticed something was wrong when blood started seeping through my jeans. I played tennis with damaged ligaments, and only went to A&E after my foot turned blue. I could put my hands over a hot plate and not feel any pain.

After my hysterectomy, I did not need any painkillers. In the hospital, I only asked for them once, in the hope that they would help me sleep when the constant beeping of the machines kept me awake. When I was discharged from the hospital, they gave me a large box of codeine tablets, to take whenever I was in pain. They are still in my bathroom cabinet as I write this post, ten months later.

Now, I cannot help but wonder if my resistance to pain prevented me from seeing something was wrong. Had I felt pain, maybe I would have gone to the doctor earlier. Maybe they would have recognised the signs, maybe I would have been diagnosed more quickly. It would not have changed much – luckily, my cancer was caught at a very early stage anyway. But you cannot help but wonder what if, and blame your body for betraying you.

When someone gives you the unexpected news, so many things go through your head as you try to process it. So many feelings, some of which you can describe, some of which you have no words for, as you have never felt them before. I had this thought though, this disturbing but unrelenting idea that I did not know my own body. After all, cancer had been developing inside of me for months, maybe longer, and I had had no idea. Something sinister had been happening inside my body, something was growing and spreading, and I had not been able to tell.

You cannot see your womb. There is something incredible about your existence being threatened by a part of you you cannot even see. It is a silent, unnoticeable threat. There is nothing you can do about it. You cannot locate the cancer in your body. You cannot pinpoint the exact spot where something is happening. For someone like me, who likes seeing and experiencing things first-hand in order to understand them, it was mind-boggling.

I have never had the best relationship with my body. I have put it through hell, I have gone from one extreme to another, I have hated it at times. But that was the last straw. I had no trust left for my body. I had been betrayed by a part of me, by cells and organs that made up who I was. For the very first time, I realised I truly had no control.

Treatment only made that worse. Surgery is hard on the body, in many different ways. For me, it was the only real option if I wanted to live. So I accepted it. I was peace with it. But still, it felt like it was being forced on me. My organs were going to be literally ripped out of my body, and I had no say in the matter. Was it even still my body, since I could not control what was happening to it?

After surgery, I struggled physically. So many things I used to take for granted, I could no longer do. Small things I was not allowed to do, like lifting a kettle or bending over to tie my shoes. Sitting up without using my arms, which my body now simply refused to do.

The loss of hormones which accompanied the removal of my ovaries did not help. Suddenly, I would find myself crying, and unable to explain why. I would feel weak, I would feel hot. I had headaches which lasted for days. I had strange pains in my muscles, my body was doing its own thing, I would wake up cold and drenched in sweat. I would feel hungry, and then could go days without eating.

To get through it, I detached myself from my body entirely. I convinced myself that my body was going through something, but my mind was on a different path. My body was weak, it was diseased, but my mind was going to be fine, it would stay strong.

It is freeing, but it is also terrifying. There are days where I look in the mirror and I do not recognise what I see. Where I cannot make the link between my body and the image I have of myself.

I am working on it. I am now aware of every single thing that happens in my body. A twinge here, a tremor there, I am conscious of everything, but I cannot tell what is causing it. There is a disconnect between my mind and my body. I overreact about every sensation in every part of my body. If I was not able to tell the signs the first time around, I should now try and listen to every signal it is giving me, should I not? I feel afraid of my own body, of how it could be letting me down at any second.

But it is my body, and I hope to have it for many years to come, so I have to reclaim it. I have to make it feel like mine again. I might not have been in control of what happened to it a year ago, but I now hold the reins of what is left of it. I keep experimenting with my hair, because I feel lucky I was able to keep it throughout the last year. I cut it, I shave it, I bleach it, I dye it. It is all mine. I got a new tattoo, I have plans for more. I did not choose the scars on my belly, but I get to choose these ones. From now on, the marks I make on my body will be all mine.

I barely flinched when getting my latest tattoo, but I felt it. It was a slight pain, a twitch in my arm, but I felt it, and it was amazing. I knew where the pain was coming from, what was causing it, and I was the one who had made that choice. I had control. I could have stopped it at any moment. My body and my brain were connected for a while, and it was my own doing.

It is both beautiful and terrible. You should not have to cause yourself pain in order to reconnect with your body. For months after getting that tattoo, I kept tracing the raised lines over my arms, the scars which were giving me comfort. When they disappeared, as the tattoo finished healing, I felt a deep sense of loss.

I have taken to wearing different clothes. I used to always be hot and wear short sleeves. Now I wear huge jumpers, just to feel warmth around my body, to surround it with something I can touch every time I move. I wear trousers, when I always wore dresses. You can feel trousers against your skin, you can feel your body moving with them, straining against them as you change positions. I wear rings every day, just to stay aware of my fingers.

It is not an easy road. I do not make these decisions on purpose, all the time. It would be exhausting. I think my brain found a way to tell me what my body needed, without me being aware of it.

I need to listen to it. To all the signs. I cannot understand them, not yet. Every feeling, every sensation that I do not control causes fear. But I have a support team. I have a nurse who I can call when I am worried about symptoms. There are doctors who can tell me what is happening, who can reassure me. It is normal. My feelings are normal, my reactions are normal, my body is normal again, as far as they can tell.

It will need some getting used to. I hope one day, I no longer need people to help me understand my own body. But in the meantime, I will keep on learning to take care of it, so that we can support each other, me and this body that I am reclaiming.

The Post That Started It All

Although I have always loved writing, I had never thought of writing a blog to share my experience. One the eve of the one-year anniversary of my diagnosis, I decided I wanted to share my experience with people, and wrote and shared a long facebook post. The response I received was overwhelming. People reaching out, comments about how much they related, how much they appreciated that I had shared that with them. I realised that not only had sharing this post lifted a weight off my chest, but it had helped others as well. And overnight, the idea to start a blog came to me, and I decided to make the jump. The post below is taken from the message I wrote on that night, the 14th of October 2020.

If you know me, you probably know I am not a fan of feelings.

They are unpredictable, they are messy, they make you vulnerable, they are overwhelming. I am uncomfortable experiencing them, let alone talking about them or sharing them on facebook.

I have been thinking about it a lot this past year.

A year ago, if you had asked me where I would be in a year, I probably would have given you some positive, commonplace and deliberately hopeful answer, like ‘oh, I hope I have my life together, a good job, a boyfriend, maybe a new flat, I will have made some progress with my writing, started a small calligraphy business, who knows.’

Well, let’s be honest, it turned out slightly differently.

Tomorrow morning, I will wake up and it will have been a year since I was given a diagnosis of cancer. A year since I first cried in front of friends, family, and strangers (I will make an exception for all those times I cried when I was drunk before – it does not count), and since I started doing it most days, because it is often the easiest answer to the question ‘how are you doing?’. Crying is not a feeling, and it is all my feelings at once.

I truly thought that when the dreaded one year mark would come up, I would be feeling all positive, ready to put it all behind me. After all, the prognosis was extremely good, the operation went well, I am expected to make a full recovery, recurrence is fairly unlikely.

But then, cancer had been very unlikely too.

A year is the perfect moment to turn the page on everything that has happened. A new chapter, a new beginning, that is what everyone has been saying, and I have too. Only, I have been lying.

I still cry every day, and that is not likely to magically change from tomorrow. I think about it every day, I think about the exact moment, at 9.10 in the morning, when I saw the first of scores of doctors. I cannot remember the name of the surgeon who operated on me, or the nurse who chatted to me whilst I was recovering, but I can remember the name of the doctor who gave me the news, telling me he was not supposed to be the one to tell me, as he had no interest in oncology, that it should have been done differently, not at a routine appointment, that he wished he was not the one delivering these news, that they should have asked for someone to come with me, that they did not because they did not expect it, that they did not even have a specialist nurse available.

I did not cry, even as he explained what the treatment would involve, and what it meant for the rest of my life. I asked if I could call someone. I had no idea who I was going to call. I could not even think straight, but I was obsessed with the idea that I had to save face, that I would not cry in front of him. They set me up in a quiet room with a cup of tea – even asked me what kind of tea I wanted. I took out my phone and without hesitating, I called my mum.

And then I started crying.

I have not stopped. I cry in the mornings, I cry when I make a cup of tea, I cry when I look at my scars, I cry when I think about the plans I had a year ago.

I am not turning the page, I am continuing to write on a scroll that only gets longer and longer, and that is ok too.

I have had the best support over the past year. Friends, family, colleagues, housemates, Macmillan nurses, everyone has been fantastic.

I still do not like feelings. I do not talk about them, but I have started writing them down, in the hope that in the future, I will be able to make sense of them, and help someone else like people have helped me.

I will continue saying I am fine when you ask me how I am doing.

And one day, it will be true.