Fertility and the Power of Saying No

Just a couple of weeks ago, a friend and I were talking about genetics – I can’t remember why or how it came about. At some point though, I blurted out ‘well, you know, my dad definitely has one blue-eye gene, so he might have passed it on to me, so I could technically have blue-eyed kids…’

I caught myself right at the end. Nope. Technically, I could not.

It felt… bizarre. For a second, I had completely forgotten about that little truth of mine – how, thanks to cancer, I will not ever be able to pass on any of my genes to a child.

It didn’t hurt. It was like an out of body experience. I could not believe I had uttered those words. I know very well that I cannot have kids. It couldn’t be me saying those words. It just felt… wrong.

Later on that night, lying in bed and thinking back about what happened that day, I did get the wave of feelings I had avoided earlier. It was such a simple thing to say. It just was the way I had always thought, up until two years ago. Passing down my genetic make-up. But that’s no longer an option.

Cancer and fertility are an incredibly complex topic. There are so many ways your fertility can be compromised during cancer treatment – chemo, radiotherapy or surgery can all affect your reproductive organs in their own way, no matter the type of cancer.

For me, it was very clear cut (pun intended). Womb cancer treatment involves removing the womb. No womb, no pregnancy. To be safe, the doctors also recommended a bilateral salpingo-oophorectomy – to those of us who are not doctors, that means surgical removal of the ovaries and fallopian tubes.

I would later be told that actually, that extra step might have been an unnecessary precaution. The biopsy had led the doctors to believe my cancer was Stage 1, Grade 2, when it actually ended up being classified as Stage 1a, Grade 1. Less aggressive, and less likely to come back. I would probably have been fine keeping my ovaries.

But there I was anyway – 27, childless, no plans of having children in the near future, being told that my womb and ovaries would need to be removed.

There are options for people in my position. Options which were presented to me – I would not be allowed to undergo surgery without speaking to a fertility specialist first, to make sure I knew what I was getting into. 

It only took me half a day to make my decision. Within maybe three hours of my diagnosis, before I even knew what the options were, and what they entailed,  I had decided that I did not wish to do anything to preserve my fertility.

For weeks afterwards, I would be told that I could not decide without speaking to the experts, that I could still change my mind, that it was important that I consider all the angles and the possibilities that I was turning my back on. It was a very difficult time – not because I didn’t feel confident in my decision, but because I got the feeling other people were trying to tell me they knew what I wanted better than I did. I got patronised by male and female doctors, friends and family alike, but I never once changed my mind. 

Almost six weeks after diagnosis, I reluctantly attended the fertility appointment that had been scheduled for me. I sat down in a cold little room with the fertility specialist, a medical student, and a representative from a ferility research organisation. I listened to what they had to say, and I told them what I wanted – with tears in my eyes and my voice, but a certainty that did not waver.

It had been a gut feeling, but it was also a very rational decision. More importantly, it was the right decision for me.

I am not a very motherly person. I don’t like to dot on anyone, I have no patience, I hate any kind of mess.

I have strong values, I have things I care about, I have goals I want to achieve. None of those are dependant on passing down my genetic make-up. 

Although I am very much in favour of people using science to have children if they so wish, it was not something I felt was right for me.

Egg freezing (or more accurately in my case, ovarian tissue cryo-preservation) is extremely costly.  It involves using an incredible amount of resources – money, electricity, space, etc. – to give a person a small chance to use their eggs at a later date. Because we were in the UK, and the NHS was handling my case, my tissue would be stored at no cost to me for five years.

Even knowing that I would not have to pay for having the option, I did not find preserving my genes worth the environmental and financial cost for the taxpayer.

I also know from friends and family alike the emotional, financial and physical cost of IVF programmes. In my case, it would not only be IVF (with a below-average chance of success, due to the method and timing of harvesting my ovarian tissue), but also surrogacy.

Now don’t get me wrong – I am absolutely in favour of using science and doing whatever we can to help people have children of their own if it is the right choice for them. Surrogacy is a complex issue that I fully support when done respectfully, voluntarily, safely and in the right conditions for everyone (I know some people will ask me to hand over my feminist card over this, but I will stand my ground). However, it is not right for me.

I do not believe in fate, but I believe in not spending my own time, energy, resources and feelings into something that cannot happen naturally. In the choice between not having a biological child at all and having a child conceived from cryopreserved tissue, in a lab, and carried by another woman, I would choose option one every day of the week.

I am environmentally conscious, and the eco-footprint of a child, especially one whose conception demanded so much effort and so many resources, is something that I am extremely aware of. It feels like I would be making a decision that goes against my principles. And if I do not feel 100% comfortable with my decision in view of my principles, I do not think I should bring a child into the world that way.

I also believe that how you raise a child, and the love and support you provide them with, is more important than the genes you pass on. That is what makes you a parent.

And that I could still provide, if I want to one day. As of today, I do not know if I will ever want to, or if I will ever feel ready to foster or adopt a child. But that is one door that I am not closing as, contrary to the idea of preserving my fertility, it is in line with my principles, and it is something that I would feel comfortable with.

These are the answers that I gave the fertility specialist. Almost 21 months after that day, I still believe every single one of the reasons I gave.

This summer has been one of reflexion. So many of my friends and family have announced a pregnancy, or have actually given birth. I have met half a dozen babies and toddlers, played with them, observed them, cared for them.

I do feel something when I see my friends pregnant, or interacting with their children. But it is not pain, it is not jealousy, it is not hurt.

I guess if I had to define it, I would say it is the knowledge that they have something that I will never have. It is knowing that they are experiencing something that I will never understand fully. There is a detachedness to the way I act and think around them.

I love meeting them. I love talking to my friends and family about their experiences as new parents. There is an awkwardness, but it is only in my head, and it does not prevent me from being happy for them.

I am comfortable with my decision. It is not an easy decision, and I do sometimes feel a sort of sadness that I will not have the chance to share the same experiences as my friends.

I do not regret it. There has not been one day, in the last two years, where I told myself I had made the wrong choice. When you are struggling as I am with survivorship, having that assurance is everything.

All the Women I Can Still Be

I wrote a few weeks ago about my struggles with finding my identity again, feeling like myself and existing as a woman following. Tomorrow is International Women’s Day, and I spent the weekend trying to work out where I fit in. What came out is a list of everything I am, would want to be, may be, could one day be.

A friend.

A daughter.

A fighter.

A knitter.

A writer.

A career woman.

A patient.

A partner.

A winner.

A loser.

A manager.

A baker.

A business woman.

A bridesmaid.

A mother.

An advisor.

A reader.

An author.

A crafter.

A protester.

A supporter.

A defender.

A cousin.

A younger sister.

An older sister.

A rock to lean on.

A drama queen.

A hustler.

A traveller.

A dreamer.

A cancer survivor.

A gossip.

A listener.

A boss.

An artist.

A girlfriend.

A wife.

A seamstress.

A feminist.

An ally.

A leader.

An activist.

A lover.

A protector.

A flatmate.

A nightmare.

A dream.

A mess.

A blogger.

A champion.

A girl.

A lady.

A cat-lady.

A risk taker.

A fixer.

A teacher.

A carer.

A student.

A translator.

A decent cook.

A music lover.

A theatre geek.

A niece.

A grand-daughter.

A mother.

A creator.

A queen.

An entertainer.

An advocate.

A performer.

That is my list. It may evolve, it may grow, it may be missing a few items, and that is the strength of it.

Repeat Prescriptions, Withdrawal Symptoms and Having No-One Else to Blame

I have alarms set up on my phone.

I have a calendar with dates marked in red and blue – every twenty-eight to thirty-two days, depending on the medication.

I have daily reminders – the bottles emptying, the number of tablets dwindling, the old packets I take out with the recycling.

And still, I manage to forget to reorder my prescriptions on time.

I will sit down at my desk, looking at the calendar in front of me. ‘I’ll ring later on, after all, they only take repeat prescription requests after 11am.’

The alarm will ring on my phone in the middle of a meeting or a lengthy email at work, and I will turn it off. ‘I will do it in a bit, when I’ve got a couple of minutes.’

Usually, I remember after a couple of days, I ask my friends to remind me at a specific time – it is harder to ignore someone that it is to snooze an alarm. I always manage to find a way to reorder my prescription before I actually run out.

This month though, I was not that lucky.

I called last Thursday. Another painful phone call to the GP surgery, another ten minutes to wait to be put through to someone, another five minutes for them to check that I am actually allowed to reorder one of my repeat prescriptions. ‘As usual, we’ll need about five working days – you should be able to pick up your prescription at your usual pharmacy around mid-next week.’

It was a gamble. I had not run out yet, but the prescription I was ordering was my hormone treatment, which comes in an opaque bottle with 64 metered doses – that is 32 days of HRT. I never know exactly what day I am going to run out – I can tell when the bottle is almost empty, but that is pretty much it.

I shook the bottle that night, trying to ascertain how much was left. After all, I remember I skipped a couple of doses when I was home at Christmas. How many, I could not remember exactly. Would it last until Wednesday?

To absolutely no-one’s surprise, it did not. Thursday was fine. Friday’s dose came out of the bottle, albeit reluctantly – instead of two full doses, I maybe got three quarters of one. And by Saturday, it was all gone. It had happened once before – although last time, there were only three days between the moment I ran out and the moment I got my new prescription. I knew the next couple of days were not going to be fun.

It started with hot flushes, my body’s way of warning me that my levels of oestrogen are too low. That night, I could not get warm enough, and then suddenly I was too hot – I was boiling, I could not bear having PJs on, let alone a duvet.

Mood swings, even worse than usual. Feeling low, not feeling like doing anything. Trouble concentrating – I could barely get through a 20-minute episode of Modern Family on Netflix. Forget reading – I read the same page four times before realising I had no idea what book I was even reading. Fatigue – I took two naps on Sunday.

And then came the really painful symptoms. On Monday morning, I woke up with a slight headache. By mid-morning, my vision was blurry, I could see spots of light, I could barely read what was on my screen. The light coming from the window making me recoil in pain. I recognised the signs, I used to have them frequently. A migraine, and a migraine with aura at that. They are frequent in women with low oestrogen levels.

Nom nom, painkillers. Nom nom, a second tablet. Nom nom, nom nom. Nom nom.

What is worse than an unrelenting pain in your brain, which feels like it is about to explode? The thought that it is self-inflicted. That it could have been avoided, all I needed to do was pick up the phone a week earlier, when I had first set out to do it.

I am going to have to reorder medicine every month for at least twenty years. That is a pretty basic thing to do. I do not mind the phone that much (not when I am the one ringing – please do not ever call me without warning), so I was not particularly avoiding it. I am used to it. And I still cannot get it right.

Ever since I was diagnosed with cancer (and probably before then, although the experiences of the last year have definitely made it more obvious), I have struggled with self-worth. For a bunch of reasons, I wake up every day and know for sure that there will be a point during that day when I will feeling like a failure. And these things, the little things that should be easy to do and which I still manage to mess up, they do not help.

I feel like I deserve the pain. I only have myself to blame, after all. I have let myself down. I should not complain about the migraine, I should not take a day off work, not even a couple of hours, because I brought it upon myself. I am responsible. There are many things I cannot control in my life, but this I do. If I was not such an idiot, if I did not forget what is basically one of the only things I have to do to take care of myself, I would have been fine.

My body does not produce the hormones that I need, so I rely on drugs to give it what it needs. It is a sort of addiction, if you think about it. And what I am experiencing are withdrawal symptoms. My body craves the medication, it craves the HRT and it goes into survival mode when I do not take it.

So I set another alarm on my phone, every four hours, to remind me to take painkillers, alternating between various active molecules. I have been taking them almost religiously for thirty-six hours, trying to keep the migraine at bay, to be able to carry on with my day.

I dress in layers, to be able to remove them as the hot flushes hit me. I do CBT in the evenings, to try and get a better handle on the mood swings that the anti-depressants cannot control.

Five days. That is how long I will have deprived my body of hormones for. It has not been fun. Will I do it again? Probably. Will it affect me in the same way? That is pretty much a given.

Anyone up for nagging me in 27 days?

Family – Breaking Traditions, Crushing Expectations

This marks the start of a new series of posts. After spending time with my family over Christmas, a full twelve months since last seeing them, I suddenly had a clearer idea of what my diagnosis meant to them and how, in some ways, it affected them as much as it did me.

I am the middle child. The only girl in between two brothers. One close to my age, one a lot younger.

I only really know my mother’s side of the family. Amongst my cousins on my that side, I am ranked fourth out of nine. The first girl after three boys, amongst a group of six cousins all born within five years of each other. Three boys, three girls close together and then, years later, another three boys.

I never knew the pressures of being the eldest, of paving the way for the ones that would come after me. I never had the attention that comes with being the youngest child, the baby of the family.

What I have had to live with though, were the hopes and dreams of parents and grandparents who had different visions for the future of their boys and girls.

It is very prevalent in my family, more so than it probably should be. There is a sense of tradition, passed down from generation to generation. Boys and girls are not the same, and they should be raised differently. It is the relationship we have with our grandparents, the goals they have set for us since the beginning. Boys are pushed and encouraged to follow their dreams, get a good job, be successful. Girls are praised for having good grades, being quiet and amiable, and they are constantly asked about their relationships, and when they will have children.

Oh, I am sure I exaggerate. There were times when my parents and grandparents were proud of me for achievements of my own. When I finished school, then uni. When I won prizes for best poem and best calligraphy at the tender age of nine. When I found a job and became financially independent. When I started knitting, and proved to my nan that her lessons twenty years prior had not been in vain.

But there was always a sense that I was not following the path that they had wished for me. The fact that every time I went to visit my grandparents, they asked if I had a boyfriend, how serious it was. Whether I wanted children. When I was going to have them. When I moved to the UK, my family were more scared than encouraging. ‘But are you really going to raise your children in another country?’

My family laugh when they hear my brother’s tales of joining this or that political demonstration in Paris. They shake their head when he mentions his political engagement, but still they debate with him and take him seriously. When I told my nan about taking a feminist writing class, she told me to be careful, and not become ‘one of those feminists who scare men away’. After all, political engagement and strong feminists beliefs were not, in her mind, synonymous with a happy, fulfilled life. It is dangerous. I never told her about the many demonstrations and women’s marches I took part in.

My nan used to be a feminist. She used to be out on the street, marching for women’s rights and choice to own their bodies. But as she started having a family, raising her own (many) sons and daughters, she fell back into age-old patterns that imprison women in a role I did not wish for myself. My mum often tells me how differently she and her sisters were treated from her brothers. She does not see that she has repeated the same pattern.

For years, I pretended to go along with it. Shook my head when they asked me when I was finally going to get married and have children. Laughed when my nan kept mentioning how her sisters were already great-grandmothers. How my cousin had had a child – how it would be my turn next. I ignored my mum when she told me that she would love to be a grandmother, when she said she was not getting any younger.

It was always expected that, once my rebel years were over, I would settle down, marry and have children. I still have trinkets that were given to me to ‘pass on to my children’. By refusing to conform to the family pattern, in their eyes, I was only delaying the inevitable. It would happen, and they would finally be proud of the woman I had become.

When my mum and my nan, in turn, learnt of my diagnosis, in addition to the pain, they had to face the disappointment of hopes they had clung onto for years. My mum mentioned how she would never see her only daughter pregnant. My nan sent me a teary, extremely violent email, about how unfair it was that my ability to have a family was being ripped away from me. How sad she was that my life was being torn apart, even if I would be physically fine. How she could not even begin to imagine how it felt, for me never being able to experience the biggest joy of being a woman. In her eyes, I had lost everything I should have lived for. That realisation hurts.

I am more at peace with my future than they are. They had built a world of hopes on something that I had not signed up for. But today, these disappointed dreams and expectations weigh on me. I hear it when my nan barely knows what to say to me anymore. Her whole idea of me as a person, as a woman, has shifted. She does not know me anymore, as the life she had built for me in her head has come crumbling down. What do you talk about with someone you cannot understand, someone who you had imagined a whole life for, and who no longer meets your expectations?

Every time I speak to her, I feel the weight of her disappointment, of her shame. She has voiced this disappointment every time she has written me an email or given me a call, telling me how tough it must be for me, how sad I must be. How she wished we could have traded places, so I could live a proper woman’s life. But the disappointed dreams are not mine, no matter how many times she tries to convince me of it. They are hers.

I will never be able to give her what she thought would be my future. I was the eldest granddaughter. I know she wanted to see me pregnant, because she had told me so. I know she wished to see me happy in the only way she could imagine a woman ever being happy. I know she worries about what my life will look like now that I am no longer able to repeat the old family tradition of having children.

It is taxing, feeling like you have disappointed someone you care so much about, someone whose dreams you crushed without having any say in it. I feel responsible, even though I never wanted these things for myself.

I will never achieve the ideal life of a woman, as defined by the matriarchs of my family. I will break tradition. I will go against their expectations. But I will be the woman I decide to be, my own idea of a woman, and I will grow from their experiences, even if I do not claim them for myself.

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.

Fighting For My Right Not To Have Children

In the two months between my diagnosis and the surgery, I lost count of how many times I had to explain I did not want children, and I was not planning on preserving my fertility. I was used to it – after all, announcing to the world you do not want children rarely goes well, even today. But I was not prepared to have to fight for my voice to be heard.

When you are first told that the only treatment for your condition is a hysterectomy, many things go through your head. For me, the first one was ‘will that cure me?’, but I have always had a very rational mind. Before cancer, and during the diagnosis and treatment process, I was very much focused on the big picture. I saw an issue, I thought of a solution. I only considered the smaller details inasmuch as they could help achieve the bigger goal. This has changed since then, I find the bigger picture terrifying, overwhelming, and I find comfort in details and small-scale decisions.

For me, it was cancer, but many women go through a hysterectomy for other reasons. In a way, I probably had it easy. I did not have to fight to have my hysterectomy, the doctors agreed it was the only viable option. It was going to happen no matter what – unless I refused treatment entirely, which is always an option. And obviously, a hysterectomy is a major operation, with major consequences on your life and your future. Although it is a fairly standard procedure, and there are fewer risks than a number of other major surgeries, it has lasting effects, particularly on younger women. Without a uterus, you will not be able to get pregnant.

I have a pretty good knowledge of biology – I took A-levels (or, more accurately, the French equivalent, the bac) in science, and biology was one of the main components. The minute I heard ‘hysterectomy’, I knew what it meant for my fertility. The doctor who gave me the news made sure to explain as well, to ensure I had all the information. At that stage, he mentioned that it might also be necessary to remove my ovaries, due to the grade of the cancer on the biopsy they had taken. The cancer appeared to be Grade 2, and removal of the ovaries is recommended in that case, as more aggressive types of womb cancer have a tendency to spread to the ovaries as well. If the biopsy had shown Grade 1 lesions only (as my cancer would later end up being), I would have been given the option to keep my ovaries, and to harvest eggs later should I wish to have a biological child.

The procedure which I would be undergoing would be a total hysterectomy with bi-lateral salpingo-oophorectomy. I know, it is a mouthful and a half – try saying it in a language that is not your mother tongue, after you wake up from general anesthesia. No womb, no ovaries, no tubes. It is a lot to take in – or take out, as it is.

On that first day, the first doctor I saw – he did not have an interest in gynaecological oncology, and had very limited knowledge of my case, as he had to break the news to me at a routine appointment and did not have much information – mentioned that I should be thinking about fertility-preserving options. I was overwhelmed. I had just been given the news that I had cancer – you brain cannot process much information after this. Or at least, mine could not. I had understood that meant I would not have children. I was very quickly at peace with that. I had never been particularly keen on having children, and so in my opinion, it was not a huge loss. It was also something I was definitely prepared to do in order to survive, which is what it came down to. I told the doctor there and then that I was fine with it. No children in exchange for a 95% cancer-free survival rate at Stage 1, I would take that any day.

The next day, I had an appointment with a specialist in gynaecology oncology, and a Macmillan nurse was also present. This was exactly what I needed. Facts, accurate information, options, everything was discussed. I had a friend with me, here to support me emotionally and take in all the information I could not process, ask all the questions I could not think of. And at that appointment, they broached the subject which the previous doctor had only hinted at – fertility preservation. That would involve retrieving eggs or ovarian tissue, and freezing them. This could allow for potential future in-vitro fertilization of eggs, and the possibility of having a biological child, using a surrogate. The success rates of such procedures vary greatly, but it was an option.

It was always very clear in my head – this was not something I was interested in. There were several reasons for this, which I had been listing ever since the possibility had been brought up. One of my arguments for not having children even before cancer is that there are too many children in need of adoptive or foster parents, and I was always very open to the idea of adopting instead of having children, if I ever went down the route of having a family. I was not even sure I wanted a family, so it would be a waste of resources and money for my eggs to be preserved, if I ever was to decide I did not want to use them. Finally, I did not like the idea of forcing something that was not meant to be – if I could not have biological children naturally, I would rather not force nature and involve science, resources and energy to try and make it happen. I think it is absolutely right for people who wish to go down that path, but it is not for me. And I think a part of me was relieved. If I said no to fertility preservation, I had a clean break. There was no option, there was no disappointment if ever IVF and surrogacy did not work. I had arguments, I had made up my mind, I was very sure of myself. This was not something I had decided on a whim. I had never really wanted children, I was ready for that option to be taken away from me entirely.

I mentioned this to my team, and they were understanding. They did tell me that they wanted me to see a fertility expert before I made up my mind. I understand why they did. They do have to make sure that you are not going to regret your choice in 5, 10, 15 years. Womb cancer is very rare amongst young women, so not many have to make this choice. Caution is recommended. I was a bit disappointed. In my mind, I had already made my choice. I presented my reasoning, thought it made a convincing argument. It made sense for me. Surely it would make sense for them.

Maybe it did. But they still requested that appointment. I was fragile emotionally at that point, I will not lie. I cried about it, I complained a lot. I felt like I was not being listened to. Now, a year later, I understand. But it did not make it any easier at the time.

Because I was so young and there were factors which could make the procedure more complicated, I was referred to a specialised hospital in Oxford. A new team, a new set of doctors, a new string of appointments. That was going to be my life for the foreseeable future. All appointments, all tests were scheduled. All but the fertility one. At each appointment, I kept mentioning it. I was calling the nurse in between appointments, in between assessments, asking when I could have that appointment. That appointment I dreaded, that appointment I did not want to have.

I was scared. The date of the surgery was getting closer, and still no appointment. I was advised to call the fertility secretary myself. I called, I sent emails, I chased. I was a mess. I was glued to my phone, I was crying in the loo at work, I had to cancel meetings and work trips ‘just in case the appointment falls on that day.’ By that point, I had told about eight different doctors and nurses I did not wish to preserve my fertility, and got the same answer every time: ‘you need to speak to a fertility expert’. I protested (I was truly a horrible patient, and I apologise for it), and was told several times told that it was because I was so young, and there was a risk I would change my mind and they wanted me to consider all the options. I was not young anymore. I had aged about 20 years in the space of four weeks. I knew my mind, I was frustrated. I was afraid it would delay the surgery, as they refused to carry it out without me having spoken to a specialist. Finally, ten days before the surgery was scheduled, I was given an appointment. The hysterectomy was planned for a Tuesday, the fertility appointment would take place the Friday before. Cutting it close.

I had been arguing with doctors, but I was also fighting people in my personal life. People who kept telling me that I should reconsider. Friends. Family. The same arguments that the doctors had made to explain the need for that appointment, my loved ones now gave me to convince me to go ahead with fertility preservation. You are too young. You are going to regret it if you do not do it. You will see, in ten years. But do you not want to try, just do it and see if you want to use them later? It costs you nothing. And probably the most infuriating of all: but what about your future partner? What if he wants children of his own? Arguments that after a while, made me want to cry. Of course I had considered it. Of course I wished that I had been given the choice to have children. Having it taken away from you is extremely violent. It takes away your free will, and even though it is no different from what you wanted, it feels like something has been ripped away from you. I like options. I like having a choice. I often saw myself as one of these women who would decide not to have children, who would stand up against society. By taking that away from me, it was like a part of me I liked no longer existed. But at the same time, it was about making that choice, right there, right then. I would not have children, and that would be it.

All the fight had been taken out of me at that point. I remember going to the hospital, being in a room with the fertility expert, a medical student and another woman. They explained the options. I said I was not interested. And that was it. No explanations needed, no justification. I had made the choice in front of an expert, that was enough. I signed the papers they gave me. I agreed to donate part of my ovaries to research, so they could try and improve on options to preserve fertility in younger girls undergoing chemo or radiotherapy.

I have not regretted my decision. I am still angry about having had to fight to get my voice heard, to even get an appointment. To have had to speak to so many different people about it, to have given the same answer, again and again. To have had to justify my choice in front of people who should have been supporting me during this time, not making me feel guilty about the decision I was taking. To have been told time and time again that I was too young to make a decision like this. I was too young for cancer too, but cancer did not care.

Before cancer, I had to justify my lack of interest in children to people who had no say in the matter. Now, when they ask me, I just tell them that I cannot have children. I see pity in many people’s eyes, but all I feel is relief, because I no longer have to explain myself.

I Am A Woman

When I first heard the word ‘cancer’, when I was in that cold, cluttered room with a doctor I had met less than a minute earlier, I did not think for one second about how it would affect my identity. I did not imagine it would ever change the way I thought about myself, the words I had used to describe myself for years, decades. But it did, and I am constantly fighting to reprise an identity that was taken from me the minute I became another case on the surgeon’s schedule.

I have always been a feminist. I cannot remember when I first realised it. Maybe it was during discussions with my mum, with my gran, with these women who helped shape my life, sometimes despite themselves. Maybe it was because of arguments with friends, with my brothers, with teachers. I remember trying to deny it, pretending that I did not care, saying that I was not a feminist, no, I was in favour of equality between all genders, not just promoting women’s rights. I was a feminist then, and I am a feminist now.

I have always been proud of being a woman. There have been times where I found it hard, but I have always wanted to stand up for women, celebrate how strong we were, I have always admired women and everything they represent. My idols are strong, passionate women who support each other. I love being a woman, and though I might not love everything that comes with it, I would not wish to change that for anything in the world.

If there was ever one thing I was sure of, one truth that I could always go back to when in doubt, it was my identity as a woman. I used to be a girl, then I became an insufferable teenager, and finally I made my way into womanhood. I have always felt like a woman, even when I considered myself a tomboy, wearing ripped jeans, riding my bike, insisting on buying boy’s hoodies (and then went through an absolutely contradictory phase, where I did not wear anything but dresses and skirts for over five years – I am an all or nothing kind of person). I never even considered the possibility of feeling differently. I never felt the need to justify my feeling like a woman – it was so obvious to me, it was engrained into every single part of my being. It took me a while to realise I was coming from a place of privilege, being so sure of myself, fitting into one of these pre-defined categories. I consider myself a very open-minded individual, especially as regards gender and sexual identity. I never truly believed that a person’s gender was defined by their sexual organs (or lack thereof). As I grew up, I became more aware of gender identity and gender studies, and I find it absolutely fascinating (and I don’t just mean that I am obsessed with RuPaul’s Drag Race and cry every single time someone struggles with their gender identity on there. Even though that’s true too). I just never thought, privileged as I was, that I would ever not feel like a woman.

When the doctor told me that the only ‘reliable’ treatment option for my cancer would be a total hysterectomy, I did not imagine for one second that it would affect how I thought of myself. I remember sitting on that sofa, in a quiet room, calling my mum, messaging my closest friends, breaking the news to them less than an hour after having heard them myself, and I remember thinking that it was alright. It would just mean never being able to get pregnant, and no more periods. The latter, I could do without. The former was more complicated.

My life goal had never been to have children. I am terrified of pregnancy. I took more pregnancy tests ‘just in case’ in my early twenties than most people who are trying to get pregnant will ever take, just because of how much the possibility that I might be pregnant scared me, and I needed to be sure. Really, really sure. I am afraid of babies, I am not good with children (do not tell that to the families I used to babysit for). But at the same time, looking down the line, looking at how I saw my life in 10, 15 years – could I really say I never imagined having children, having a family? I could not. As I told my dad, a mere few weeks before the diagnosis, when no-one had any idea of what was happening in my body, I could ‘see myself one day considering thinking that I might not not want to have children.’ It was a very remote possibility, and I took my decision there and then. I would have the hysterectomy, and I would never carry children.

Further down the line (I will write a post about it, or maybe several), before the operation, I had to consider whether I wanted to freeze my eggs. Or, as the experts call it, ‘explore fertility-preservation options’. I had decided from the very moment they mentioned it that it was not something I wanted to do, not something I felt comfortable with. So this was it, then. I would lose my ability to have children that were biologically mine, and I was perfectly fine with it.

I know and admire plenty of women who are unable to have children, for one reason or another. I also know and support many who do not wish to have them. It does not make anyone less of a woman in my eyes.

And despite all this, I have struggled. I have struggled with my identity as a woman. There are days where that thought haunts me, and I do not know why. Is it the loss of my reproductive organs, even though I never believed they were what made me a woman? Is it the loss of my ability to have children, even though I did not particularly want them? Is it the loss of hormones caused by the surgical menopause, despite the fact that in my eyes, older women are still women?

I am always harder on myself than I am on others. I judge myself a lot more harshly than I do other people. Maybe that is it. But deep down, I think it is also the thought that other people might not see me as a true woman. I know who I am, but how can you predict how other people will react? How do you know what someone will think? And I am not naïve. I know very well that plenty of people consider that your gender identity lies with your reproductive organs. Well, in that case, mine burned down ten months ago.

The first time I felt like this was mere days after the surgery. I had just gone home after two nights in the hospital, and my family had come over to spend Christmas with me. They were staying at an AirBnB a few streets down from where I lived, and I was spending the night on my own. It was maybe the first or second night I was on my own. It woke me up in the middle of the night, and the pain was worse than any physical pain I had ever experienced. Who was I? Was I still a woman? It was the very first time I cried after the surgery.

It crops up regularly. Sometimes there are triggers. They are often silly, often extrapolations of my own imagination. I take things personally. I cry, and other times I get angry. One of my worst episodes was in the spring.

I have always been a huge Harry Potter fan. I know everything there is to know about it, they are the first books I read in English, just because I could not wait for the French version to be released. And that tweet from JK Rowling angered me like few things have angered me in the past. I was angry on behalf of the trans community, I was angry on behalf of some of my friends, I was angry on behalf of everyone who does not fit within the cisgender majority. I was angry on behalf of anyone who had been hurt by her words. And it took me a while to realise I was angry on behalf of myself as well. I do not menstruate, and I am a woman. I do not have a uterus, and I am a woman. My body does not produce oestrogen on its own, and I am a woman.

I say it to myself sometimes. I look at myself in the mirror, and I tell myself ‘I am a woman.’ It alleviates the doubts for a while. I am a woman.