Numb

Stoic, impassive, apathetic, unfeeling.

Disconnected.

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

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

Automatically.

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

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

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

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

I am a robot.

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

I feel nothing. I feel empty.

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

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

I am numb.

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

I know what happened to me.

It still does not feel like it was me.

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

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

I am a stranger to myself.

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

Switching point of views for a second.

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

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

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

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

‘I don’t know if I’m doing enough.’

‘I feel like I’m not helping.’

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

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

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

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

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

‘I don’t know what to do.’

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

‘What can I say?’

‘I’m afraid of stepping on his toes.’

‘Maybe he doesn’t want my help.’

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

‘It’s like they don’t want me there.’

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

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

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

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

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

Yes, we will be a bit short with you.

Everything is so raw.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

A Creature of Habit

I used to be the type of person who was always up for something new. Sure, I had my favourite books, which I re-read once a year, my favourite films, which I would watch curled up in bed when I had a bad day. But I would rejoice in discovering something new, in watching something with the hope of being pleasantly surprised.

I cannot do that anymore.

In the last twelve months, I can probably count on one hand the number of films I have watched for the first time. For every single one of those, I read the plot first, I researched the synopsis, I looked for a detailed summary, I searched for spoilers.

Instead of starting new TV shows during lockdown, I have re-watched the same ones, again and again. I call them my little obsessions, and watch the same episodes several times over, sometimes in a different order, sometimes restarting series from the beginning. I know exactly what is going to happen. I find comfort in the lack of surprise.

I have read the same books over and over again, so much that I got sick of some of my favourites. So I bought new ones, and I jumped straight to the end and read the last few pages before coming back to the beginning.

What am I afraid of? Everything.

I have never liked surprises. I have always delighted in reading spoilers on purpose before watching the new episode of a TV show (except for that episode of The Good Wife – I was not ready). But I used to like finding new, exciting stuff to watch, new authors to follow.

Now, I am afraid that something, somewhere, will be a trigger and send me into a dark place. I try, sometimes. I watched the new series of Queer Eye in the spring, settling on the sofa with my coziest blanket and a cup of tea. It is one of the most heart-warming shows ever, and I had loved the previous series. There are a number of episodes that I still watch when I am feeling down. But I was not able to enjoy the new series. Every minute, I was afraid someone was going to mention their experience with a life-threatening disease. Terrified that I would be able to relate, that I would see my own experience on TV, see what my family might be going through, what could have been. Convinced it would send me in a world of tears and anxiety if it happened – and it did.

Whenever I watch something new, I am on edge. I cannot relax. You never know when a trigger is going to appear. I do not even know what all my triggers are. Sometimes, it will be a character talking about having lost a child, and my brain will start going crazy, imagining what my parents could have felt like. Some other times, it will be someone mentioning how they got their scars, and I will think about mine, about having to explain to someone how I got the four purple lines on my stomach.

Some triggers are both obvious and insidious. I was reading a new book the other day, something that was supposed to be short and light-hearted. I did what I always do, read the summary, read the ending. All seemed fine. So I started, and halfway through the book, it was revealed that the main character had had cancer, and had turned her life around after getting better. That was a punch in the gut. It was not the main plot point. It was in the background, it was a way for the author to justify the character’s anguish and struggles. But it moved me to tears, and all I could do for the next couple of hours was curl into a ball and wait for it to pass, taking deep breaths, trying cognitive behavioural therapy and only getting more frustrated when it did not work.

It is exhausting, to constantly be on the edge, to know that you might break down at any moment and be terrified of when it could happen. It takes so much energy, so much brainpower. And it is physically draining too – my whole body tenses up, I grind my teeth and do not breathe correctly. It is impossible to relax.

I have developed obsessions, because they are comforting. They allow me to feel safe, to feel protected. To have a break and to escape, if only for a few moments, the ‘deep, aching sense of dread’, to quote a line from Schitt’s Creek. No matter how many times I re-watch that gem of a show (and trust me, it is close to a dozen now), I know how it is going to go. I know where I will laugh, where I will cry, where I will love. I will know the lines, I will be able to anticipate and prepare myself for the feelings that are to come. There a lot of triggers for me in there, so many moments where I shout at the TV ‘that’s me!’ – usually when someone is being overdramatic for no reason at all. But I know they are about to happen, and I am ready for them.

I have read each of The Dharma Bums and On The Road twice since the beginning of the year. It brings back happy memories, it brings back moments of my life where I felt like nothing could touch me, where my biggest worry was whether I would be able to finish my essay in time to go out with my friends. I read Harry Potter again in the spring, because of how safe it felt.

I know I should try and widen my horizons again. I cannot keep watching and reading the same things over and over again. So I will give it a go every now and then, but always with the same care – read the plot summary, try and know of any major spoilers before I make a start. Get a feel of how it might affect me, so I can make sure I will not break down when the time comes.

I have tried asking recommendations from friends, and getting details out of them before I start reading or watching something new. It is hard, because small details which they might not notice will send me over the edge. I struggle putting my triggers into words, so I cannot ask them exactly what I need to know, what I need to avoid. It is also not fair on them – I do not want my friends to focus on my issues when they are relaxing.

It will probably take quite a bit of time for me to feel comfortable discovering new stories. In the meantime, there is an old season of Gilmore Girls calling my name.