Who Am I?

‘Please tell me about yourself.’

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Womb of Shame

Or how it is still taboo to speak about endometrial cancer, when almost half of the world population has, or has had, a womb at some point in their lives.

After my cancer diagnosis, I only shared the news with a few people I trusted. I did not post anything on social media for over three months, I avoided any mention of my health or anything that could suggest something was wrong. And then, one day,  more than a month after surgery, I decided to take the plunge. It was late in January 2020, I had just registered for the Shine Night Walk, a charity walk through London that was supposed to take place this September. I had set up a fundraising page to collect donations for Cancer Research, and I decided that I would share my story on it – it felt like a safe place.

For the first time that night, I posted on social media about my cancer – sharing the link to my fundraising page and a long text about my own personal battle with cancer. I wrote in English, and I wrote in French too, fighting against myself to find the right words. 

It was a very private post. I wrote that I had had womb cancer, and that I had been lucky enough to only have needed surgery to get rid of it (fingers crossed). There was no mention of a hysterectomy, no mention of my reproductive organs, no mention of how it would affect my hormones or my body going forward.

I received a lot of support. So many messages started pouring in, so many well-wishers and concerned friends. When people messaged me separately, sharing their concern and checking up on me, I gave them more details about what had happened, but only if they asked.

It was very early in my grieving process. I had not really come to terms with what had happened yet, so I was not able to put it into words like I can today (not that I claim to have fully come to terms with it, not yet, not quite). However, I now realise that was only part of the reason why I did not give more details at the time.

There are some cancers that are widely understood. The ones that are often represented in mainstream media. There are visible cancers, there are the scary ones, there are the ones you cannot hide. And then there are the ones like mine, that people cannot see. The ones where you have no obvious physical proof that you have cancer – at least not at first glance. And then there are also the cancers that make people uncomfortable, because they feel they should stay private.

When I first shared the link to this blog, I received a message from a friend, who had only learnt about my cancer right there and then. That person was shocked and supportive. We spoke, and they asked why I had decided to share such private details about my body with the world, and whether I had considered that talking about my womb might make some people uncomfortable. The person who asked that question was a man.

The question was not meant in a rude way at all, he was not trying to be malicious. It was simple curiosity, and I answered it as honestly as I could. It did not come out of the blue, it was one of many questions he asked, because he was a bit taken aback by my decision to share details about something that is usually kept quiet. He wanted to understand why. It did not feel great to be questioned like that, but I understand where he was coming from.

There is an element of shame attached to talking about your health, about how you are not doing as well as people were expecting. Speaking out about parts of your body that are diseased, parts of you that you do not show to the world. Cancer comes with its own element of shame. It should not, but it does.

It is definitely exacerbated by the fact that there are some cancers you talk about openly, and there are some you do not hear about much. Had you ever heard about endometrial cancer before? Did you know it is the fourth most common cancer in women in the UK? I did not.

There is a particular stigma attached to cancers which affect your reproductive organs, because we do not talk about them much in public. Because the cancer was in my womb, some people may feel like I should maybe not talk about it as openly as I have, maybe the details should be kept private.

Would describing what happened to my womb and my ovaries really bother people that much? Should I maybe hide those details? Should I not post on Facebook about my hysterectomy, with the view of sparing anyone who might feel uncomfortable reading about my reproductive organs?

It is not just because of cancer. It is because I am discussing female organs, female issues that a lot of people normally avoid talking about. Take menopause for example. It is something perfectly natural that happens to so many of us. But people keep it quiet. Women themselves do not discuss it amongst themselves, they censure themselves out of habit. The effects of the hormonal changes to your body, to your mind, they are almost taboo. There should be no shame in talking about a natural process happening to a person’s body. But there is.

So many women have hysterectomies these days, not all due to cancer. And yet, I did not know anyone who had had one – or so I thought. When I started sharing my story, people started coming to me, telling me about how they, their friends, their sisters, their mothers had gone through something similar. But it had been kept private, hidden from view.

I realised that I had censured myself when I posted, back in January, about the ‘surgery’, with no further details. Whether consciously or unconsciously, I had refused to share the details with a wider audience. I had been afraid of offering a detailed description of what happened to an intimate part of myself. I was ashamed. And I am now ashamed of having been ashamed.

Who was going to see my posts, who would read my blog? Friends, family, colleagues, old acquaintances. People of all genders, people roughly around my age, for the most part. Out of those people, how many would feel uncomfortable? How many would stop reading because the words ‘womb’, ‘ovaries’ and ‘periods’ bothered them?

Would I have felt the need to censure myself if I had had a different type of cancer, one that did not affect my reproductive organs, like a brain tumour, leukaemia, pancreatic cancer? I know people who have had those cancers, and they talk about them openly, and do not worry about offending anyone. So why should I?

When I started this blog, it was with the purpose of sharing my story, of unveiling what had happened and not holding back the truth. I am going to talk about my ovaries, I am going to post about the loss of my fertility, about being a woman without a womb. I am going to tackle issues that women have been refraining from mentioning out loud for generations.

Men, women, non-binary people might read this, and might feel different levels of discomfort, for innumerable reasons. Family, friends, strangers, people who are related to me, people who know me and people who do not. They do not have to carry on reading, but I hope they do.

Cancer can affect pretty much every organ in your body. It does not discriminate, and we should not either. Let us discuss every form of cancer, let us discuss how it affects our bodies, whoever we are. Let us get rid of the stigma that some cancers are more shameful than others, just because they affect a part of us that has been deemed private for centuries.

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.