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.

Cancer is the Loneliest Word

Lonely. That word has come up in every single one of my therapies sessions.

I was alone on the day I received my diagnosis. Alone in that cold, sterile hospital room with two chairs in it.

It was not on purpose. They had not been expecting to give me such life-changing news, so they had not asked me to bring someone with me to the appointment.

Alone is how I started my cancer journey. Little by little, I let more people in (and then my mum told half the world without consulting me, but that is a story for another day).

Every message I sent, every person I told face to face, every phone call I made, I was expanding my support network. Trying to feel less alone.

I had amazing friends. Incredible support, a bunch of people who tried taking some of the weight off. Thinking for me, cooking for me, taking my mind off everything that was happening.

Friends who came to appointments with me, drove me, waited with me, did my shopping for me, brought me food and sent me cards and crafts to keep me busy. Parents who came over from abroad for the operation. Brothers who gave up their Christmas plans to come and spend it in a tiny AirBnB in Buckinghamshire.

And so it feels wrong, it feels selfish and ungrateful to say my cancer journey was – and still is – extremely lonely.

The pandemic must have played a part in this. By keeping people away for almost a year and a half, we have obviously grown apart. And very few (if any) people saw me go through the first 18 months of my survivorship.

Survivorship is about getting over cancer. Putting it behind you, learning to live your new life as a cancer survivor. It is the part people do not see, the mental struggles, the silent battle, the will you have to move forward and the constraints that your body and your mind still put on you. Learning to live with cancer, despite cancer, beyond cancer.

At first it was about learning to breathe without hurting. Remembering how to walk, how to bend, how to do yoga. How to get back to work, how to go to appointments and not be afraid anymore. It has been about accepting the reality of cancer, understanding its effects, my present, my future. And on that path, I was alone. I was working from the confines of my bedroom, then my studio, then my living room. I was having catch-up with friends via Zoom and Messenger, family group chats and hospital appointments by phone. I learnt to be myself again without someone to hold my hand and sit right next to me, but on my own.

Just like I was on the day of my diagnosis at the hospital. Alone, with my phone and my thoughts.

Now, as I see friends and family again for the first time in months or years, I realise people do not think about me the way I think about me. The pandemic has drawn a line over cancer, it has separated two distincts moments of my existence. There has been no continuity in this cancer, because people have not witnessed me going through it.

There was the Lauriane of autumn-winter 2019, the one who had cancer, who had treatment, who was on the road to recovery. And then there is a blank, there are almost two years of no contact and no seeing each other in person. Cut-off from the world for two years, people now see me as a different Lauriane. The one who is fine. Who no longer needs support. Whom we do not associate with cancer anymore. Two very distinct beings.

It is hard to feel lonely in a room full of people, but it is how I feel now, both literally and figuratively.

Literally, because sometimes even though I am physically in the room with you, I am not, not really. I have these intense flashbacks where I am reliving random (or not so random) moments of my cancer journey. Sometimes I get away with it and no-one realises, sometimes I have to rush out so people do not notice. It happened at a handful of family dinners, it happened on a dozen video calls, it happened watching football at the pub with friends. I was in the room with them, cheering England on (I know, I kmow), and then suddenly I was not. I was on my own, scared, shocked, afraid, back at square one, in my own head, and oh so lonely.

Figuratively as well, because I was the only witness of my cancer journey. Only I have the full story.

Because my family and friends do not necessarily know the full story, either because they do not want or need to know, or because I would be incapable of summarising the last two years for anyone else, I have to accept the loneliness.

There are people who I have spoken to basically every day over the last two years. But even to them, I have not been able to tell everything. The meh days, the really bad days, the days I wanted to give up, the days I wished I was more sick so people would come flocking to me like they did when I first got my diagnosis.

No-one warns you that your support network will wobble and dwindle as your body starts to get better. It makes sense that it would. As you begin to rebuild yourself, you let go of the arms of others and try and stand on your own two feet.

I feel guilty about still not being OK, and it making people uncomfortable. I feel guilty trying to shove my cancer onto other people when they would rather forget. I feel guilty refusing to put it behind me and forget all about it, when people have moved on.

I feel guilty of feeling lonely when people have done their best to make me feel safe and supported. And even in my guilt, I feel lonely.

Scars, Stares and Silence: A Summer of Self-Consciousness

They are angry.

Purple, raised, asymmetrical.

Shockingly dark against my pale skin.

Four marks on my lower abdomen, a sort of connect the dots drawing a rather crooked X pointing to the source of my shame. A treasure map leading to emptiness.

They are the visible stigma of my ordeal, the proof I am not whole. 

My hysterectomy scars.

I trace them with my fingers, often. The one on the left, slightly more raised than the others. The one on top of my navel, long and thin, the one that took ages to heal.

I refuse to look at them. I do not know why, considering I have no problem exploring them with my fingers.

But I will not look down. I will avert my eyes in the mirror. I will cover them up so I do not have to inadvertently see them. 

But others do.

I have been very careful not to show them to anyone. I have gone swimming daily since the spring, and I always wear a full-coverage one-piece swimming costume that keeps them hidden from view, concealed from strangers. No-one can see them, no-one suspects a thing.

Until yesterday.

The much expected and much dreaded family holiday started, complete with extended family time, lazy afternoons by the swimming pool and games nights.

I knew it would be too hot for my usual swimwear (and also, no-one wants a racer back and swimming shorts tan line), so I went on a hunt for the perfect bikini before I left.

I was not concerned with finding something flattering as much as I was with making sure it would cover as much of my scars as possible.

I thought I had done pretty well. All in check, except the one above my navel, which still peaks out from all the high-waisted bikini bottoms I could find, a few centimetres of raised, uneven skin.

I somehow thought that it would not matter as much, because I was with family. Family are respectful. Family would not stare like strangers would. 

But they do. And worse, they know what caused the scars, and yet they still stare.

My mum in particular. And it hurts.

It hurts when her eyes will not leave my stomach. It hurts when she will not say a word about it. It hurts when she will look at my scar every time I get in or out of the pool. It hurts because she is uncomfortable with my scars and my body and makes it obvious whilst also not bringing it up.

I never used to be self-conscious much, but cancer has changed that. I did so much work over the last few months to try and get more comfortable with my situation and my cancer-survivor body, and it all got wiped in the blink of an eye. More like, in that second they refused to blink and look away. But also refused to engage and bring up the truth.

No-one has said a word about cancer.  About my recovery.

I am seeing extended family,  grandparents, aunts, uncles for the first time in over two years. Last they saw me, I had not even been diagnosed.

And now, it is being ignored. Swept under the carpet. If we do not ask questions, it does not exist, does it? No-one asked how I was doing. Where in my recovery I was.

But they stare, and that leaves me feeling both ashamed and lonely.

Either stare and bring it up, or avert your eyes and stay silent.

I will feel uncomfortable either way, but at least I will have someone to share that discomfort with if you say something.

We do not talk enough about the mental load associated with cancer and making people comfortable with it.

Having to take that first step. Forcing people to acknowledge the fact that it exists, when I myself am not comfortable with it. I cannot ignore it like you can. You bring it up by constantly staring at my scars, you should at least offer to take some of the load off.

It should not be up to me to ease the discomfort you make obvious, but also refuse to bring up.

***

At least that has given me an idea for my next few posts: mental load , loneliness and selfishness in cancer recovery.

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.

Walking Down Memory Lane, Part One: Avoidance

It took me a while to get this post out. I started about seven different drafts, and it took exactly eighteen days from the moment I wrote the title until I finally got the courage to finish it and the nerve to post it.

It is not my best work but I cannot stand to go over the same words again, erasing them, reworking them, rewriting them. It is ironic, considering the subject matter.

I never used to be an avoider. I liked to confront things head-on. I did not shy away from difficult situations, I strove in the face of challenges, I liked to take risks, take the plunge, run away with things.

I have changed. There are routes that I can no longer bear to take, people that I dread to see, voices that I do not want to hear.

I have known triggers. I know that if I walk past the hospital where I was diagnosed, there is a 70% chance I will be assaulted by unwanted images and memories. Sure, there are days when I feel like I will be fine. Days I know I can’t even attempt it, when I am close to tears already. And days when it could go either way. So I avoid it, I do not take the risk.

I cannot talk to my mum on the phone without being back into that room at the hospital where I broke the news to her. Video calls are fine, but sitting on my sofa, and answering the phone? I feel sick at the mere thought of it. The feeling of the phone in my hand, against my ear. The memories are vivid. I can remember the smell, the plant in the corner, the colour of the cushions. One phone call, and I am back in that room.

There are clothes I can no longer wear. The trousers I had on the day of my diagnosis, I gave to a charity shop a few months ago. The shirt I really liked, so I still have it in the back of my drawers. I hope that one day I will be able to put it on again without drowning in my own tears.

So I avoid all these things that I know will make me uncomfortable. I am not strong enough to face them head-on. I force myself to go to hospital appointments, and I find excuses for anything else that I know will trigger flashbacks and unwanted memories. I get enough random intrusive thoughts in my day-to-day life to choose not subject myself to these situations on purpose.

Until I can’t avoid it anymore.

In late May, I was told I should go to the office for one day, to pick up my new laptop.

I have been working from home (and complaining about it) for fifteen months now. At first, I was elated. The office, yay! Something different. Something I had been pushing for for a year.

I started making plans about a week in advance, arranging a day for me to go in, planning to meet my manager there, have lunch… I was so excited.

And then, on that same night I had learnt I would have to go into the office, I had one of my worst panic attacks so far this year. My brain just started remembering stuff I had pushed aside for a year, making links I had never thought of, and generally working overdrive.

We moved to that office on the day I had the biopsy which would lead to my diagnosis. The date is probably not relevant to anyone else. I had never even made the link before that day. But that means my cancer journey actually began on the day we moved into that office. The cancerous cells that would define the rest of my life were sent to the lab on the same day I rolled my pedestal under my new desk.

I spent hours replaying that day in my mind. The bus I took to the hospital, and then back home. The train I got into work. The lunch I had with my friends, where I told them about the appointment, and that ‘it looked like polyps, but they would confirm in a couple of weeks. It was probably fine though’. How relaxed I was about the whole thing. Oh, how naive I was.

Obviously, that was not enough for my brain. Over the next week, it decided to remind me of every step of my cancer journey that took place in the office.

The day I came in after hearing the news. The way my friends, my manager greeted me. The moment my phone rang at my desk – my dad calling after my mum had given him the news. How I sat crying my heart out in the meeting room. And the other meeting room. And my manager’s office. And the phone booth. And this, and that room.

Every phone call. Every appointment made, every person I told. Oh, that meeting I had with my team two days after the diagnosis. Where I sat, willing myself not to break, trying to stop the tears, to stay strong, to crack a joke that would make it feel less real. The stairs where I sat when I told a friend before we went on lunch.

The memories are so vivid. I remember every second in that office in the weeks before and after my diagnosis. Every hard, terrifying second. Every moment I wish I could forget.

I was terrified. Suddenly, going into the office seemed unsurmontable. If just thinking about it sent me into such a state, surely I would not be able to actually do it.

I was frustrated. I went back to the office after the operation and before covid sent us all home. I was fine. I was perfectly fine, I was happy. And I know there were some good memories in that office too. Decorating the place for Christmas. My friends’ support. My colleagues’ little attentions. I am crying whilst writing this. I wish I could remember those moments rather than the ones that cause me so much pain.

That week leading to my going back to the office was one of the longest and hardest I had experienced in a while. Every moment I was not focused on work, I was reliving those same memories, over and over again. I was crying at night instead of sleeping.

I thought about cancelling a million times. Surely I could speak up. Ask for the laptop I needed to pick up to be couriered over to me.

But I refused to do it. There is a time for avoidance, but I cannot let my fear, my feelings and my memories control my life.

And so I went.

(To be continued)

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.

If You Are Doing Something, You Are Doing The Right Thing

Switching point of views for a second.

I have spoken at length about my experience of cancer as a patient, because that is what feels the most true, the most raw. That is what I need and want to get off my chest, that is where I feel my experience could help others.

But there are two, seven, twenty sides to every story.

Over the last few months, several of my friends and family have had to witness a loved one going through diagnosis and treatment. Have had to be a rock for their family to rely on, despite their own grief and pain. The shoulder for someone else to cry on after the loss of a close relative.

In a strange turn of events, I have become somewhat of a confidante.

‘I don’t know if I’m doing enough.’

‘I feel like I’m not helping.’

‘I don’t know how to act around them.’

‘He said he was fine. I don’t think he’s fine.’

‘I’m afraid of saying the wrong thing.’

‘I said something funny to lighten the mood and she just bit my head off!’

‘I asked what was wrong. That was a mistake.’

‘I don’t know what to do.’

‘I’m afraid I’m going to lose it in front of them.’

‘What can I say?’

‘I’m afraid of stepping on his toes.’

‘Maybe he doesn’t want my help.’

‘I’m afraid I’m going to make it worse.’

‘It’s like they don’t want me there.’

‘I feel like everything I’m doing is wrong.’

‘I’m doing my best but it seems so little.’

Having been on both sides, I can honestly say: whatever you are doing, it is the right thing.

Short of refusing to listen to someone, and ghosting them after you have heard the news, there is no wrong thing to do.

Yes, we will bite your head off from time to time.

Yes, we will be a bit short with you.

Everything is so raw.

But weeks, months, and years later,  we won’t remember the moment you decided to make a joke and it fell flat.

We won’t remember you only being able to text your support because you were in another country.

We won’t remember that you were overbearing in your desire to help.

We won’t remember that you used some really clumsy words which you instantaneously regretted.

We won’t remember the terrible dinner you cooked for us.

We won’t remember that you had tears in your eyes every time you said it was going to be OK.

We will remember you said it, and you wanted to believe it.

We will remember you cooked for us when we didn’t have the strength to do it.

We will remember that you said something, and that was enough.

We will remember you tried to help even when we thought we didn’t need help.

We will remember you were there, in whatever form you could manage.

We will remember that you were making sure life was going on.

There is no need to be afraid. There is no right way to support someone going through a life-threatening illness, or the loss of a loved one, or a traumatic event.

You are doing the right thing, and we are grateful.

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.

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.