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.