Family – The Burden of Genetics (I)

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

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

Until one day, when it became all that mattered.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Family – Breaking Traditions, Crushing Expectations

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

The Ghost of Cancer Past

I woke up this morning in my mother’s guest room at home, a kitten biting at my bare feet, head pounding.

My first conscious thought was that I really should close my bedroom door. The second one was that today was the one-year anniversary of the actual operation.

365 (well, 366 – obviously 2020 had to be a leap year) days since life-changing surgery. A year ago, at the time I am writing this, I still had a womb. I still had ovaries. I still had cancer.

I would be lying if I said I did not feel a sense of loss. But strangely enough, it is not only the loss of my reproductive organs that I feel today. I also mourn the fact that this is the second-to-last one-year anniversary that I will have on my cancer journey. Today, and then all that is left is the 13th of January, the one-year anniversary of the final staging, the day I was told that for all intents and purposes, and as far as doctors could tell, there was no trace of cancer in my body. I was in remission.

For a year, I have clung onto these dates, the small anniversaries of each step in my cancer journey. They were frightening, I dreaded them, each one more intense than the previous one. But I also found comfort in them. I reached milestones. No matter how hard those days were, they made me realise I was moving forward. They helped me retrace my journey and let go of feelings I did not know I have.

Tomorrow, I will not be able to say ‘I had surgery less than a year ago’. I will not be able to use it as an excuse for however I am feeling.

In four weeks, I will not have any more one-year anniversaries to celebrate. It is daunting. It feels like I am losing a timeline that helped me stay anchored for the past year.

I did not expect to feel that way, I did not even expect that I would think about those anniversaries coming to an end. I am discovering more aspects of my grief every day.

Am I looking forward to being free of those dates? Will things get easier when I do not wake up each day knowing exactly what I was doing a year ago? Will I rejoice in the fact that, come mid-January, I will no longer associate each day with memories of cancer?

I will not blow a candle today. I will not celebrate the birth of my new womb-free, cancer-free body. But I will light a fire in the living room (I am not turning into an arsonist – there is a fireplace), and let it consume a year’s worth of memories and grief for the organs I no longer have.

Letting Go

I have always been obsessed with the idea of keeping it together. Finding a way to keep moving forward, even when it hurts, even when it means pretending. Focusing on things I can control, instead of delving into my issues and trying to solve them. Saving face, again and again.

Last week, for only the second time since my diagnosis, I let go. Did I forget that I was supposed to pretend? Did I not have the energy to hold back the feelings, to glue together whatever pieces of me were still whole?

The surge of feelings after my hospital appointment was both expected and unexpectedly violent. The whole experience was incredibly brutal.

First came the panic attacks the minute I set foot in the hospital. I was holding it together until then, but then I broke down. Teary, barely able to think, speaking in a whispery, soft voice that is very uncharacteristic of me, breathing hard but hardly breathing, the whole shebang. But a panic attack for me is not about letting go, it is not about losing control of your feelings. It is a sign of my body being unable to cope with a situation, and reacting physically, automatically, to what my brain cannot cope with. 

After I got home that evening, after I wrote to my friends to tell them everything was fine, after I posted here about my relief at being cancer-free, I finally let go and gave in to my feelings.

In a rare display of true emotion, only exacerbated by sheer exhaustion and the now familiar migraine that comes after panic attacks, I spent hours that night crying. I am not sure what I cried about. Relief. Fear. Anger. Acceptance. Loss. I let my feelings overcome me and tear at my carefully-crafted armour of false-strength.

And for two days, I could barely move. I was paralysed by my feelings. I felt sick, I felt useless, I struggled to even open my eyes. The only other time I can remember feeling so overcome with feelings was after the cancelled operation. I let my feelings wash over me, and take control of what happened to my body. I lay in bed, under the covers, with a pile of tissues and a box of painkillers at my side. I alternated between crying, drifting off to sleep for short, restless periods, and feeling sorry for myself. Feeling angry at myself.

Since October 2019 and the diagnosis, I had not taken a single sick day for cancer reasons that was not related to either a doctor’s appointment or the surgery. I came in the day of my diagnosis, and the day after. I came back from sick leave after surgery a week early. But last week, just like the week after they cancelled the operation in early December last year, it finally became too much. I had no energy. I had no brainpower. All I had were feelings a year in the making, an unrelenting migraine, and a week’s worth of insomnia.

So I let go. I let my feelings take over my body and my brain, and I stopped pretending, for two blessed days, that I was fine. I gave in. I knew my feelings and self-pity had an expiration date – I was travelling back to France at the weekend and needed to be back up on my feet by then.

Did it feel liberating? In a way. Because I did not go to work, I did not have to pretend to be ok. I did not have to repress my feelings and put up a brave front. I was unapologetically broken, and I was honest.

For two days, I did not make myself do anything I did not fancy. I did not eat. I drank lots of tea, I went for a couple of walks, I avoided people and listened to Christmas music. I cried for hours, in the comfort of my own bed, under the stream of the shower, in the woods at the edge of the park. I let go.

But there, at the back of my mind, were still uncomfortable feelings. Guilt, for taking days off when work was busy. For having the privilege to do so, when so many people cannot afford that. Uneasiness, for making people uncomfortable when telling them what was wrong. Anger, anger at myself for not being strong enough to keep pretending and live a normal life. Shame at not being a functional human being. Shame, shame, shame.

Two days. That is how long I allowed myself to let go for. And then I picked up the pieces of myself and put them in a suitcase and a backpack, and dragged them over the border to France.

One Year On: We Are in the Clear

If I had any energy left after my one-year follow-up appointment this afternoon, I would probably blow up some balloons and put them up in my flat.

It was hard. My eyes are raw from crying. I used about two boxes of tissues – one in the waiting room and one in the exam room.

I cried in front of the receptionist. I cried in front of the nurse who checked my height and weight. I cried in front of the doctor, and I cried in front of the cancer nurse specialist.

Follow-up appointments are rough. You can go about your life for months, but you know that everything could change in a matter of seconds, in that same room where you first got the news. The. Exact. Same. Room.

I had a new doctor again, who asked me plenty of questions about how I was diagnosed, how it came to be, what tests were done, how thick the lining of my uterus had been on the MRI scan (I have no idea). As I was battling my way through my tears, she told me it was ok to cry. It was ok to be overwhelmed, to be traumatised. She told me that I had gone through a lot for someone so young – terribly young, and she could say that because we were exactly the same age.

I do not know why that comment struck me as odd. Why of all the things she said, that is the one that stayed with me.

But it is all said and done now. A quick exam, a lot of background info, a chat about any symptoms I could have had, an inventory of the medication I am on, and I have been declared cancer-free, until my next appointment in four months.

I will have more to say in the coming days. About how they told me if things remained the same, I would be discharged after one more year, instead of four. About how my dedicated nurse was self-isolating so I was not able to speak to her, but arranged a phone catch-up in a couple of weeks to discuss my ongoing mental health problems.

For now though, I will crawl under the covers, put a good audiobook on and try and get some much needed rest. I may order a celebratory takeaway later, making up for the fact I have had maybe 4 meals in the last 6 days. I will make myself a hot chocolate and put the Christmas lights on.

In the wise words of Adore Delano – Party.

Hospital Appointments and Fearing the Unknown

I had another flashback last night. I was splashing water onto my face before bed, reviewing the pros and cons of reading the next chapter of Barack Obama’s A Promised Land to fall asleep versus listening to the audiobook – an internal debate I have had every night for the last two weeks. I closed my eyes, and when the water hit my face, I was back at the hospital, after my diagnosis, thinking cold water could help me make it feel real, hoping it would drown my tears.

There had been no warning signs, no triggers that I could have identified and nipped in the bud. I opened my eyes and gripped the sides of the sink, trying to regulate my breathing. You are ok. You are at home, this is just another evening, this is your night-time routine.

There had been no warning signs, but I am fairly sure it is related to the fact that, at the moment, hospital appointments are the only thing on my mind. I am terrified of them, I think about what could happen at my appointment next week about six times an hour. It is no wonder my brain finds random associations with everyday activities, like splashing water onto my face. Trauma is no fun.

I have been thinking about the ‘why’ of it a lot. Why am I obsessing over the simple idea of an appointment? Why can I not sleep, eat or have fun for days and weeks before each one is supposed to take place?

It is simple. I have no idea what is going to happen, and so I cannot project myself in the future. I cannot make plans for after the appointment, I cannot anticipate how I will react, what I will do.

Oh, I know what the appointment is going to entail this time. I had a similar one just three months ago. A chat with the doctor, a physical check-up, a catch-up with the nurse.

I also know that the risk of them finding something wrong is low. I know that I probably would have had symptoms if something was not quite right. I also know that the risk of recurrence is low.

The issue is that throughout my diagnosis and treatment, more than half the appointments did not have the outcome that I had expected.

There was the appointment where they broke the news to me, where I was woefully unprepared.

There was the surgery that did not happen.

There was my appointment at a menopause clinic in early January, where, because the operation had been delayed and the final staging had not happened, they were not able to provide me with a plan for hormone replacement therapy. I took a 4-hour round trip to Oxford on public transport, just two weeks after the surgery, barely standing and walking, only to be told I would need to come back at the next available appointment, two months later.

And there was the final staging appointment. The one where, on 13th January 2020, I was asked to come to Oxford again to discuss the results of the operation, and talk about further treatment. My friend had come with me and, because we had arrived a whole 30 minutes early, she went to get a coffee whilst I checked in. Less than two minutes later, I was called in by the surgeon.

I did not know what to do. I told him that my friend had just gone to get a coffee, should we wait for her? He said he thought I would be fine on my own, which I took as a good sign.

I knew that appointment could go one of two ways. Either they would confirm the original stage and grade of the cancer (which had provisionally been declared Stage 1A, Grade 2), or would tell me that they had actually found more, or different cancer cells on the tissues removed during the surgery.

I had prepared myself for both possibilities. I had told myself I was ready either way. And still, the outcome was different than anything I could have expected. I sat down opposite the surgeon, and he quickly went through the surgery, telling me it had been a success. That the cancer was confirmed as Stage IA, Grade 1. I blinked. Excuse me, Grade 1? The surgeon nodded. I interrupted him again. I had been told after the initial biopsy that the cancer would be Grade 2, what did that mean? And he confirmed that the grade had been lowered as the immense majority of cells appeared to be Grade 1 after examination of the tissues removed during surgery.

I was floored. It was excellent news. It would mean I would not need any further treatment. I would be able to have HRT. As the surgeon said, removal of my ovaries had only been indicated as they believed at the time that the cancer was Grade 2. The surgery had been more extensive than would have been strictly necessary.

It was good news, but it was once again hugely unexpected news. I had not imagined that lowering the grade of the cancer would even be an option. How was I supposed to react? I had trained my brain to deal with all the potential outcomes, but not this one. It just solidified the idea, in my already traumatised mind, that anything can happen at one of those appointments. Good news, bad news, anything at all.

The unknown is terrifying. You spend so much time preparing for any eventuality, only to end up being taken aback by something you could not have expected.

For my last check-up in August, I had taken time off work in the week leading to the appointment. I went on a very short solo holiday, coming back the night before the appointment. This ensured that I would be busy, doing things I enjoyed and keeping myself distracted up until the day of the dreaded appointment. It worked – kind of. I only had two panic attacks on the day – one in my bathroom as I was getting ready, and one at the hospital, where I completely broke down in front of the young doctor who was checking up on me (keeping my fingers crossed it will be a different one this time – I think I terrified the poor man).

This time, I will be taking a different approach, working right up until the morning of the appointment. Will that help keep my mind busy up until the last minute? Will I be too distracted? I can only try, and find something that works for me. After all, even if all goes well, there are still four more years of regular check-ups to come.

So that is what terrifies me. My brain works overtime at the moment, trying to imagine dozens of different scenarios and doing its best to anticipate what could happen. There are honestly not enough hours in the day to compute all the possible outcomes and imagine how I might react, preparing my feelings, my reactions, what I will tell people. All the while knowing that no matter how many different potential outcomes, there might be ones I have not thought about. Ones that I will not be ready to face.

Bring on Wednesday.

Talking About Cancer – Making Light of It

Today marks exactly one year since the day my operation was first scheduled. It is also six days until my next check-up at the hospital, for the dreaded one-year mark (or as close as we could get without having me go for a check-up at Christmas).

At the moment, it is impossible for me to spend any length of time during the day not thinking about cancer. It permeates everything, it colours every feeling, every decision I make. It makes me cry, it makes me sick with worry, it makes me crumble to the floor in the shower until the water goes cold, it makes me forget how to breathe in the middle of my morning walk, and fall over in the park.

Because cancer is all-consuming, it is almost impossible to push it to the back of your mind, and not think about it at all. You need to find other ways to cope. Ways to tame cancer, to make it less of a threat, make it into a subject you can discuss, something that can make you laugh as well as cry.

I have found that making light of cancer helps. Making jokes, bringing it up in an unexpected way and observing people’s reactions can be priceless. When you make fun of it, for a few seconds, it no longer is the big C, or the other C-word. It is cancer, and it is something you can bring up without fear, something you have earned the right to laugh about.

I have always loved dry humour. Saying something unexpected, sometimes a bit dark but that will bring a laugh upon someone’s lips – or a shocked gasp, depending on who my audience is.

Just this week, even though I am battling one of the darkest weeks I have had all year, I made two of my ‘cancer jokes’, and it felt amazing. They were awkward, they were uncomfortable. They were not necessarily funny – I definitely will not be quitting my day job to start a career as a comedian – but they did make me feel more in control. For a few precious seconds, it felt like cancer was mine to beat, mine to laugh at. If I can laugh about it, surely it cannot hurt me anymore.

I was on the phone with a friend at the weekend, and we were talking about how I have been having a lot of mood swings and have been feeling very tearful lately – even more so than usual. My friend was asking whether I thought it might be hormone-related, or could it be an issue with my antidepressants maybe? In a deadpan, slow voice, I interrupted her and said ‘God, I hope I’m not pregnant’. A couple of seconds of silence, and an awkward laugh followed. Sorry to have made you uncomfortable – personally, I think that has been the highlight of my week so far.

The other joke I made was during a group video call, with a lot more people than I am usually comfortable with. I had not spoken to some of them since the summer of 2019, before it all happened, but they all knew, either because they had been told by other people or they saw something on social media, or read this blog. We were talking about how long it had been since we last saw each other, and I said ‘well, it’s been a while. Last time we spoke, I still had a uterus’. Some faces looked shocked. There were a couple of laughs, a few shaking heads and one amused ‘Can’t argue with that’.

I have been using humour to cope for months now. Earlier this year, I uploaded a selfie on social media, showcasing my brand new short hair and using a caption that would have made my mum cringe: ‘Getting rid of my hair like I got rid of that cancer – #snipsnip’. I felt so powerful in that moment. Cancer was nothing more than a punchline. Snip snip, my hair. Snip snip, cancer.

I understand these comments might make people uncomfortable. Not everyone is happy to have a laugh about something so serious. But for me, it is a way of getting over it, of proving that cancer is not as threatening as it looks, of feeling like I have the upper hand for once.

I think it is also important to show people that I can laugh about it. If I can make jokes, if I can make light of a terrible situation, maybe people will start feeling comfortable around me and my issues. Maybe they can make their own jokes, and I will laugh at them – no puns though, nothing make me cringe more than a bad pun.

I have earned the right to make those jokes, and to laugh when you make one. Not everyone with cancer will see it that way, and for some people cancer will always stay off-limits. For me, making light of cancer is proof that it has not taken over my sense of humour. I can still be hysterical.

Well. Not etymologically.

Talking About Cancer – The Power of Words

Cancer is big. If there is one thing that we can all agree on, it is that cancer is massive. When you first hear the words, it upends your life in a second. And then, it starts affecting the people around you, your friends, your support network, your family, people you had not thought about. And what I have come to realise is that we all have one thing in common: we struggle to find the right words to address cancer, and discuss it.

Does it come from a place of fear? The word ‘cancer’ itself is unnerving. A couple of years ago, I told off my older brother, who had started using the phrase ‘c’est cancer’ (‘it’s cancer’) to say ‘that sucks’. He had picked it up from some French gamer on Twitch, and was using it so much it drove me crazy, and not just because it is grammatically incorrect. I told him it made me uncomfortable, and I think that was because of the power I gave that word. In my mind, ‘cancer’ had always represented something horrendous, something so severe that the word itself made me feel scared.

I have now come to terms with it. I can say the word without feeling anything, without feeling scared or crying. It is everything else that I struggle with.

There is no right way to talk about cancer. There are no right words, because they all feel wrong. They feel like they should not have been uttered. They feel private, they feel hurtful, they feel dangerous.

From the moment you decide to talk to people about your condition, you have to be careful what words to use. How to even start the conversation. I think every time I told someone, I started with some version of ‘I just wanted to share something with you – I have had some bad news. I was at the hospital the other day and […]’. I felt like that was a good start. It prepares your audience for what is to come. It is not as abrupt as coming out and saying ‘I have cancer’ straightaway. By making it into a story, with an introduction, by setting the tone and narrating it like a tale, it almost made me feel like I had it together. It was a story, it had a beginning and a clear narrative structure. And when the word ‘cancer’ appeared, whoever I was talking to was not taken aback. I had led them there, and made their experience more peaceful than my own.

When talking about what happened to me, I am so careful about the words I use, the sentences I write. Consciously or not, I make a choice every time I talk about cancer. Just take the first sentence of this paragraph. ‘What happened to me’. That was a deliberate choice. Making it sound like something that came upon me, diluting the message by using a vague concept. It does not sound as real as ‘when talking about cancer’, does it? And it puts me in a passive role, a spectator to my own life. Just think about how long it takes me to write these blogs if I think about each word for that long.

I have always tried to find the right balance between melodrama and a cautious indifference. Depending on who I was talking to, I would adapt the way I spoke about cancer. I would speak about it freely with a couple of friends. I would tone it down for people at work, stressing that it was probably ‘very early-stage cancer’, even before I knew that for sure. I spoke about ‘treatment’ at length, without going into the details. I barely ever uttered the words ‘chemo’ and ‘radiotherapy’, even when I was discussing potential post-surgery treatment. I did not find comfort in the medical terms. Hysterectomy, FIGO stage, adjuvant therapy. They always felt cold, almost too severe for me. I am not a medical professional. If I had not been personally affected by cancer, I probably would not have used these words. By not using them, I was hiding from their reality, and it helped me cope for a while.

I also struggle with tenses. It does not feel like much, but I freeze every time I want to say ‘I had cancer’. Should I say ‘I have cancer’? Should I say ‘I have had cancer’? None of them feel right, and all of them feel right at the same time. I am not out of the woods yet, but I also do not technically still have cancer… Or do I? In my previous article, I typed the word ‘remission’, and only then did I notice that I had completely banished it from my vocabulary. It is an ugly word. It is a word that denotes the limbo I currently live in. Neither ill nor cured. Cancer might still be here, in my body, dormant and menacing, quiet and deceiving. I will try and use ‘remission’ more going forward, because it is the word that defines me best. I will get used to it, I promise.

There are other words that come to mind. I already spoke about the duality of the word ‘strong’, and how uncomfortable it makes me feel. ‘Cured’ is another one of those. ‘Lucky’. ‘Depression’. The list goes on. But there are also words that make me happy (ok, they are mostly the names of baby animals, I will never say no to a discussion about meerkittens and otter whelps).

It is true not just for me, but also for people I talk to every day. I am going to go out on a limb here, and say that I do not think that anyone (apart from health professionals) has said the word ‘cancer’ to me in at least six months, at least in reference to me. And I have discussed it with plenty of people. I have used it myself. I speak to a few of my friends about it directly at least once a week. Is the word taboo? Do people avoid saying it because they are afraid of it, or afraid of how I will react? I will say it here – you can say cancer to me. You can even say it three times in a the mirror – I promise I will not come and haunt you.

People are so careful around cancer patients, worried about saying the wrong thing. But just so you know, there is no need to tread on eggshells around me. You can say anything you want. I have lived through it, there is nothing you can say that will shock me, that will trigger a reaction in me that I do not already trigger in myself twice a day.

Words are a big part of this, but talking about cancer goes beyond just that. It is an uncomfortable topic in general. I will see you at the weekend for a blog about how to make light of cancer – because we all need it sometimes.

Talking About Cancer – Who to Tell

Talking about cancer is scary. It is scary for the patients, but also for their families and friends. Who to tell, how to break the news, what to say, how much of the truth to share. What tone to take, whether making light of cancer is acceptable, how to ask someone with cancer how they are doing. When to speak up, and when to listen. Those are all questions I do not necessarily have answers to, but I will write a series of posts on here about my experience of talking about cancer at various moments of my own journey. And I will start at the beginning, the first question – who to tell.

There are so many different stages to a cancer diagnosis, and what worked for me at a certain point of my journey no longer applied a couple of months later. Sometimes talking will be harder, sometimes it will come naturally. Sometimes I will initiate it, sometimes I will be happy for someone else to bring it up. What worked for me will not necessarily work for someone else, and I am not pretending that the choices I make are the right ones. But they were right for me at the time.

Between the moment I was diagnosed and when the surgery was deemed a success, I tried to keep the news restricted to a close circle. A number of friends, people at work on a need-to-know basis. My immediate family. I deliberately kept it quiet, for reasons that I do not fully understand even today. Did I feel like it made it less real? Did I feel like I was stronger, if some people still saw me as a healthy individual, with no threat looming over my head? Did it simply make me feel better, to be able to have cancer-free conversations with people who did not know? Was I denying the truth, was I protecting other people? Was I protecting myself from being looked upon with pity, with sympathy? Was I avoiding other people’s stories, and personal struggles with cancer? In case you are wondering, the answer to all of the above is ‘yes’. But I know there are many more reasons, which I hope to one day understand.

I told people I felt safe with. People with whom I felt like I could be vulnerable, which does not come easy to me. My mum, because despite the fact we are not close by any means, she remains my mum. She may not know much about my life, but she remains the person who knew me best for years. My friends, some of whom I have known for over ten years, some of whom I met only a couple of years ago. People I know will have my back, no matter what, but people who are also strong enough to take the news. I told people who, whether I had known them for a long time or not, knew the current me. People I was still close with – I have older friends who I did not tell because we had not been in touch for a few months or years, and I did not want them to think of me only as Lauriane, the cancer patient. But I was also careful to only tell people who I thought would not resent me for forcing these news on them, for making them a part of something they had not asked for, and did not deserve. There is a real fear about it being too much. About the fact that when you tell someone, your cancer becomes part of their lives. I worried about how the news might affect some of them emotionally, personally. It is a burden that I would not wish on anyone, but I also could not keep it to myself entirely.

I told people who asked about why I suddenly looked so sad all the time. People who commented on the fact I had not worn make-up for days, people who noticed something was wrong, and cared enough to ask questions. They probably were not expecting the answer I gave them, but I could not lie to them. I told people who were genuinely interested in hearing about me.

At work, I told my manager, and my closest friends. And then I extended it to people in my team, people who would be affected, one way or another, by my numerous appointments and absence following surgery. I was careful, very careful about who I spoke to. At work especially, I did not want to look vulnerable.

It was hard to navigate situations where some people knew, and some did not. It made things awkward, both for me and for them. I remember an evening, four days after my initial diagnosis. It was one of my friends’ birthday, and his girlfriend had organised a surprise party at a nearby pub. They knew, along with another couple of friends there, but I was not close with the rest of the friends they had invited. I debated for a while whether I should go or not. I did not feel like going, but I had wondered if maybe it would help me banish cancer from my mind, think about something else for a while (spoiler alert – it did not). I decided to go, and it was one of the most awkward experiences of my life. Pretending everything was fine, in front of people who knew and others who did not. Having secret conversations in a corner of the bar. Being asked how I was doing in a carefree way, and lying, with tears in my eyes, in front of people who were watching me carefully.

This continued over the next few months, until the operation and until the final staging. I was choosing who to tell and who to lie to. I told people that they were free to discuss my situation with other people, but still kept a list of who knew and who did not. I kept that list for months, adding names to it, making my diagnosis more real with each new entry.

It felt very much like every single conversation I had with someone who knew had to be about cancer. I struggled to talk to them about anything else, because cancer was pretty much the only thing on my mind. When I spoke to people who were not in the know, it felt refreshing. I finally allowed myself to talk about something else, and I did not feel guilty. Yes, I was hiding a part of my life, but it made sense. I was keeping things separate. There were people I could talk about cancer with, and people with whom I had to push cancer at the back of my mind, and talk about something else.

After treatment, as the months went by and my new reality set in, that I had been a cancer patient but was now in remission, I started being more open about it. It was no longer such an immediate threat, so I felt like I could talk about it more openly. It did not hurt as much, I no longer cried every time I told someone new. I started mentioning ‘the health issues I had last year’, or ‘when I was on sick leave for a while’. To some people, I told the whole truth. To others, I just said I had been unwell. There was no pressure anymore.

It finally felt like I could have normal conversations with people who knew about my cancer. Yes, they knew, and I could slip something in here and there, but we could also discuss other things as well. We could discuss them, which made me feel great. It was no longer all about me. I was no longer as selfish, only able to talk about myself and my own problems.

When I decided to start writing this blog, and posting about it on social media, it was a very conscious decision. It took a while for me to go from ‘writing for myself’ to ‘writing so other people can read it’. I only did it once I felt ready for people to know.

But in a way, a blog is safe. Only people who really, genuinely want to know about me and my struggles will click on the links, will subscribe to know when a new post comes out. It does not feel like I am pushing my story onto others, like it would if I was simply lying this all out on social media. I know the people who will read this are interested, and it helps me be honest. It makes me feel I am talking to people who want to know, rather than forcing them to listen to me.

In real life, I struggle with what to say to people I have just met. In a way, Covid has helped, as I have not met as many new people this year as I usually would. I will sometimes mention a hospital appointment, the fact that I was not able to go home last Christmas. I have not told people directly for months now. Will I ever be able to?

I worry about future relationships. About meeting someone and having to disclose this information. When do I do it? When do I reveal the truth? It is not something I can hide, as it will affect me my whole life. When do I tell them I cannot have children, when do I tell them I am still living in limbo for the next four years, whilst I am still in remission?

I know there are people who I will need to tell in the future. People who will be affected by my experience. Will I come out and tell them directly? Will I just add them on social media and let them discover the truth for themselves? Will I bring it up in the middle of a conversation, or will I sit them down to talk about it? Will I let it slip by accident, or will it be deliberate?

I guess only time will tell.