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.

Searching for Answers: Looking for Someone (Else) to Blame

Blame is an interesting thing. It comes and goes, it tries to find a target and when it does not find one, it latches onto you and refuses to let go.

Ever since my diagnosis, I have been looking for an explanation. A clear, scientific reason, something to put my mind at rest. A definite answer: this is what caused your cancer. Your genes are faulty. It is hereditary.

I am not someone who believes in coincidences, in things happening at random. I don’t believe in destiny, in the universe, in a higher power causing things to happen.

I believe in science, in clear and cut answers, in data and analyses.

Womb cancer is caused by cells in the lining of your uterus (or the muscle, in some rare cases) mutating and replicating to form a tumour over a number of years. Womb cancer develops slowly. What causes those cells to mutate? Usually, exposition to excess oestrogen over many years is the main factor. This explains why women who have been through menopause represent over 75% of those diagnosed with womb cancer, and only 1% of cases are discovered in women under 40. Time and age are the main risk factor, although people with a family history of womb cancer and specific gene mutations are more at risk of developing cancer at an early age.

There are risk factors that make it more likely to develop womb cancer, factors which all increase the levels of oestrogen your body is being exposed to over the course of your lifetime: being older (the older you are, the longer you have been exposed to oestrogen), being overweight, having never had any children, starting your period at a young age or undergoing menopause late, having polycystic ovary syndrome, having diabetes. On the other hand, taking the combined pill for over three years is thought to lower your risk, and so is having children. No one reason in itself means you will develop womb cancer, and even a combination of those risk factors might not lead to cancer later in life.

I was 27 when I was diagnosed. I was overweight, I had PCOS. Both of those are risk factors – but they cannot explain why I had womb cancer at such an early age. In addition, I had been on the combined pill on and off for about ten years. I did not have any children, I do not have diabetes, I have no family history of cancer, and genetic testing showed no genetic mutations known to increase my risk of having any type of gynaeological cancer.

The doctors were puzzled. I remember the looks of shock, the disbelief on their faces. The times I was told that the results of the biopsy had been completely unexpected. When I was told there was no way it could be cancer at my age. The trainee nurse who looked after me after surgery, and was absolutely overwhelmed when I told her why I was there. She was my age.

And I was told there was no explanation for it. It just happened. Randomly. As it stands, science cannot provide a definite answer.

I hate it.

I hate not knowing. I hate it, because I can only continue searching for answers.

In the meantime, I can only blame myself.

I wake up in the morning angry at myself. Feeling guilty. Feeling like it is all my fault.

Feeling like I deserved it.

Blame is powerful. It started impacting all aspects of my life. I am angry at myself, I am disgusted at myself, I am scared of myself.

It has affected my self-esteem. I struggle to feel pride in anything I do – I just feel like no matter what I do, it does not matter. I failed myself in another, much bigger way.

Compliments make me feel awkward. People do not know how much I am undeserving of their praise.

I cannot fathom why people would want to hang out with me – I personally would not. Look what I did. Look what I caused. I am a failure and so is my body.

The only other entity I can blame is my bad karma. Let’s be honest, I have never had the best luck in the world. So these days, when I want to keep things light and make myself feel better, I tend to blame anything that happens on my karma. Cancer? Bad karma. How my operation was cancelled the first time around? Bad karma. Got burgled a month before my diagnosis? Karma. Got all my parcels stolen in my building for months, when others stayed untouched? Karma. Strong side effects to my covid jab? Karma. Wrong vaccine batch? Karma.

I do not really believe there is anything to it, but it takes the blame away from me every now and then. Pretending there is something else at play here allows me to breathe a little bit better.

I will not stop looking for answers though. I continue looking at all my leaflets about womb cancer, I read studies, I stalk the forums about womb cancer, hoping someone will have missed something. I might be in denial.

I was told that I should undergo genetic testing again in about five to ten years. Science evolves, and even though nothing was detected based on the current available science, there might be something at play here that we have not discovered or identified yet.

I am holding out hope. It seems strange, to be hoping for something to be inherently ‘wrong’ with your genetic make-up. But at least it would be the beginning of an answer. Maybe that way, I would be able to turn the page and focus on the future.

I know I am not the only one. It is common, and to the people living through the same thing, I want to say: science will evolve. It might not be the case for me, in my lifetime, but I will be the case the case for other cancers, other genetic mutations. Some of us will get answers, and some of us will not.

Well, with my luck it’s not gonna be me, is it.

A Number Is Worth a Thousand Words

I have always liked numbers. I hate maths, do not get me wrong – but numbers themselves are comforting. Counting makes sense. Keeping track makes sense.

I like to see numbers. Work out how many days, how many hours, how much time I spend doing this or that.

And when I am particularly anxious, when I struggle to get my brain to rest, I count. I take notes. And I write down the numbers that made up my cancer journey.

538 days since diagnosis.
473 days since my hysterectomy.

Two days until my next check up.
117 days since the last one.

Type 1.
Stage 1.
Grade 1.

31 hospital appointments so far.
Five hospitals.
Two counties.

Four appointments, three hospitals in the next ten days.

146 phone calls.

Nine gynaecologists.
Two nights in the hospital.

Nine blood tests.
Two ultrasounds.
One X-ray.
Two MRIs.
One biopsy.
One operation.

Two ovaries, two tubes, one womb.
No ovaries. No tubes. No womb.

Five Macmillan nurses.

Three therapists.
One clinical psychologist.
17 appointments to discuss my mental health.

Three prescriptions I take daily.

Six panic attacks in the last three days.
Nine unrelated episodes of tears.

One in 36 women in the UK.
Over 26 cases every day.
3% of all cancers in the UK.
The fourth most common cancer in women.

90% chance of surviving the cancer for over 5 years.

Silence or Indulgence

I have struggled to write in the last few weeks. Struggled to let my fingers fly on my keyboard, struggled to let my feelings and thoughts become public.

I feel like I have two choices.

Staying silent. Not bothering anyone. Maintaining the status quo. Keeping face.

The alternative feels like indulgence. As if by allowing myself to be open about what I am feeling, I was trying to feel a joy I am not entitled to. Making others feel bad in order to feel better myself.

It feels like I am using my condition, my issues as an excuse. An explanation to anything I might be doing wrong, I might be failing at.

I was asked by my therapist to tell people at work about the fact I had cancer last year. People I only started working with after the surgery, after I was officially in remission.

It felt wrong.

I pushed back, for weeks.

I did it the day before the deadline we had fixed.

It still feels wrong.

Silence is revered. There is grace, politeness in staying silent. Respect. Decency.

Opening up feels selfish. Forcing my struggles onto someone else. Breaking down walls, allowing people to see something that should remain private.

You draw the curtains at night so people cannot see into your house.

This is my house. It is dark. The lights are bright.

Should I draw the curtain?

I am struggling.

I want to say things.

I want to open up.

I do not want to force this on anyone.

I want to keep silent.

I want to pretend I am fine.

I want people to think I am strong.

I want people to see I am weak.

I want to scream, I want to cry, I want to forget.

I want people to talk about their own problems.

I do not want to bring people down.

I want people to be aware.

I want people to be in the dark.

I do not want to be judged because of the cancer.

I want people to to understand where I am coming from.

I do not want to tell people.

I do not know what to say.

I want to know what to say.

I want people to ask how I am doing and mean it.

I do not want to force them to hear the answer.

I want it to feel natural.

I do not want it to feel like I am complaining.

I refuse to be a bother.

It feels wrong allowing myself to open up.

It feels wrong telling people what they are happy to ignore.

It feels wrong telling people when they have no idea what I am about to say.

It feels wrong saying the words out loud, even after a year and a half.

I am not using it as an excuse.

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.

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.

Family – The Burden of Genetics (I)

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

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

Until one day, when it became all that mattered.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

If I Be Weak

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

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

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

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

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

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

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

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

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

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

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

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

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

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.