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.

Numb

Stoic, impassive, apathetic, unfeeling.

Disconnected.

Waking up and feeling like I am not in control of my own body.

I go swimming, my legs move, my arms push against the water to keep me afloat.

Automatically.

I cannot hear, I cannot feel, I cannot smell anything but the water. I am numb.

I go home and I look at my hands. They are moving, typing. It does not feel like they belong to me.

Good news, bad news. My face shows nothing. My face is not mine.

I look in control, but it does not feel like it. My brain is locked inside my body, so deep that it controls nothing.

I am a robot.

I lift my arm and let it fall back down. I watch it happen, I am so far away. My body is an empty vessel, carrying me from one place to the next.

I feel nothing. I feel empty.

I do not belong in my body – my body does not belong to me.

I watch life happen. Happen to people around me, happen to this imposter that is in my body.

I am numb.

I know I feel emotions. I know I am capable of it. But I watch them happen to me, to that other person, the one in my body.

I know what happened to me.

It still does not feel like it was me.

It does not feel like I am anyone, much less this stranger that is trying to get back to a normal life.

Dissociating. Consciously or not, I have been doing it for months.

I am a stranger to myself.

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.

Rebuilding My Identity, Finding My Voice

People often say that serious illness made them reconsider their priorities. That it made everyday troubles, fleeting friendships and things they had previously enjoyed seem unimportant. ‘Did it change your whole outlook on life?’ is a question I have had to answer more than a handful of times. Did it?

At first, I barely noticed it. During treatment, I was intent on sticking to my well-established routine. Get up, have a shower, put my face on (even though I was probably going to end up crying my make-up off), get dressed. Hop onto the train, get to work. Put in exactly the same amount of effort I would have prior to my diagnosis. It was comforting. I could pretend nothing had changed.

I was adamant that I was still the same person. I did postpone some things – I had considered moving abroad again, a change of scenery. That was no longer an option, but I told myself it would still happen – in time. Cancer was a fleeting period in my life, I would be able to give it a start date and an expiration date, frame it neatly and fold it away.

But as the months passed, and as I started realising that cancer was more than these few months I had spent waiting for treatment, that I would be living with the aftermath for years to come, it became obvious I was lying to myself. My priorities did change, they are still changing, but not in a way I had been expecting.

I did not have a big revelation one day. There was no dramatic declaration, despite my penchant for the theatrics. None of these things you see in films, with someone suddenly quitting their job and deciding to go on a trip around the world. No leaving my flat to go live on a farm and breed horses. No sudden, rash decision, no promise to dedicate my life to God, to find everlasting love, to go back to my family.

The changes were subtle.

My previous blog post was all about how I have lost myself. I do not recognise myself in the mirror, I am a shadow of who I used to be. I lost so much of my identity over the last seventeen months (seventeen months – my cancer is a toddler!), that I had to rebuild it from scratch. It is a long process. Some days, I feel more lost than found. Some days, I feel like I have not even started the process.

And to exist, to find and fight for my identity, there are things that I cling onto.

They are the causes I care about, the ideas that I stand up for. In forgetting about myself, I have only made these ideas stronger in my mind, and as I am rebuilding who I am, I am focusing on these things I am passionate about. They are the only things that make sense, the ones that keep me going, the beliefs and engagements that are strong enough to support my weight, help me reconstruct a whole new identity, and still be myself.

I have always been politically aware. My parents might not have passed much of themselves onto me, but that is one thing they would not let me forget. How important it was to understand politics, to stand for what I believed in, to fight for my voice to be heard. Their political stance might be a lot milder than mine (they are, after all, late boomers), but the idea was there. The world matters beyond yourself, and you must fight for it, you must fight for equality and acceptance and tolerance, and for a better world.

I tried not to allow myself to be overwhelmed by what was happening to me and forget about the rest of the world. Yes, there have been times in the last year and a half when I have wanted to scream ‘this is about me’ at the top of my lungs. When I have wanted to close my eyes to what was happening around me, to the pandemic raging around me and say ‘think about ME, think how bad I have had it’. But instead of changing my priorities and focusing only on myself, I have directed most of what little energy I had towards the things I believed in.

I am a feminist. I am a left-wing environmentalist. I am involved in all sorts of movements fighting discrimination, be it based on gender, race, or sexual orientation. I spend hours and hours reading about it all, trying to understand what I don’t know, trying to help by increasing my awareness and knowledge. I want to work, and keep working so that people understand cancer better and help others have a better experience than I did.

There is also a selfish reason why I do that. It helps me find purpose. I find reasons to keep fighting, I feel like I belong somewhere. When speaking about these things I care about, I see tiny little sparks of who I used to be, and of my true self. I find a voice again – my voice. I am no longer my body, I am no longer the fun-loving, easy-going girl I was a couple of years ago, but I can still fight for my ideals.

I am more radical than I used to be. I am more quiet in my personal life, and more outspoken about the causes I care about. And I am quite happy about that.

Cancer did not change my whole outlook on life. It did not change my priorities. What it did was break me down into a million pieces, and as I am putting them back together, they take a slightly different shape.

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.