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.

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.

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.

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.

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

I have alarms set up on my phone.

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

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

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

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

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

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

This month though, I was not that lucky.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Anyone up for nagging me in 27 days?

Family – 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.

New Year, New Challenges

There are similarities in the way I rang in the new year those last two years. Same group of friends (minus a few members), same no-drinking policy, same hope for a better year ahead. Minor differences – this time we were in France and had a seemingly unlimited supply of face masks and hand sanitizer. We played games, ate too much and had a chilled, fun-filled evening.

But instead of the fireworks of 2020, 2021 started with a panic attack and hot, burning tears.

I had felt them coming. I had had a few scary moments throughout the evening, moments where I lost touch with reality and slipped into my own mind. Moments when, unable to cope with two many conversations around me (and there were still only six of us), I retreated back into myself, into the mind that used to be my refuge, but has since become booby-trapped with dangerous thoughts.

After a year spent mostly in isolation, I had no idea how I would react to being around people constantly. Over the last three weeks, as I got reacquainted with my family and friends, it proved a challenge.

How do you talk to people who know of your vulnerability, but have not experienced it, witnessed it first-hand? How do you broach an entire year of physical and mental struggles with people who have only known you at your best, healthy self?

As usual, I pretended everything was fine. Most people are comfortable with that, that is what they are expecting. Most of my friends did not ask any follow-up questions. I managed to see both my parents and only mention the word ‘cancer’ a handful of times at most. They were not interested, they were avoiding the subject. It probably made them more comfortable to ignore the issue, so I pretended to do the same.

My mental health struggles, I was not able to hide as well. I felt down at times, which my friends noticed. I realised that confrontation, arguments and aggressive debates automatically sent me into a panic spiral. I cannot deal with conflict anymore – and in a family setting, conflict is sure to arise at some point, particularly if my brothers get started on politics. I guess I needed to experience it to learn of my new limits. I was given plenty of opportunities to test them, and I did not disappoint. Or rather, I did.

Big personalities make me feel small and inadequate. I used to be like that, and now I feel invisible. I no longer have the strength to battle for what I think, so I disappear in group conversations.

I do not want to disappear, but I also constantly feel like I am not enough. Like I am a hindrance, rather than a help. Like I am imposing myself on others, just by being there, by taking up space, quietly, without contributing much. I feel like I am a bother, like people do not want or need me around.

I struggle to make decisions. Weirdly enough, it does not affect me much at work, in a setting where I know I have to make calls as part of my job. But choosing between five different types of tea, what room I want to sleep in, or deciding what music we should listen to, all of that sends me into a panic.

It all culminated at New Year’s. Too many people around, too many different things to pay attention to, too many small decisions – where do you want to sit, what do you want to drink, which conversation do you want to listen to, too many things to look at and people to smile at. I could not keep the pretense long enough and I crumbled.

There were so many thoughts in my head at midnight. How everyone was hoping for a better year, even if quietly and without much confidence it would happen. I find it difficult to hope, to think about the future, which is what New Year is about. Closing the door on a terrible year, and leaping into a new, unknown one. To me, that sounds terrifying. 365 more days, and any one of them could bring terrible news and things.

Seeing people around me being happy is hard – it reminds me of how much I have changed, how I used to be one of them. It draws me into a downward spiral – I feel guilty about being down, about not being able to enjoy a few hours with my friends when I have the opportunity. My guilt transforms into shame, into self-hatred. Panic and tears settle in.

When it finally happened, just after midnight, it was not pretty. I withdrew into a dark room and let my tears flow, my breathing returning to normal after a good twenty minutes. It was my first panic attack of 2021, but I already know it will not be the last.

Last year, my only New Year resolution was to beat cancer. It was a worrying time, but the goal was clear, and could be achieved with medical procedures and treatment. This year, I do not have any resolutions, but I have challenges I want to reach and win. Feeling more confident. Achieving things and enjoying small victories. Letting go of the guilt. Allowing myself to shine and be myself, proudly and unapologetically. Having fun, saying goodbye to doubts and worries, and not being afraid to be happy.