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.

World Cancer Day

Today was World Cancer Day. A day to celebrate those who won, remember those we lost, support those who are still fighting and give hope to those who will fight in the future. A day to raise awareness and stop being afraid.

It was a long day. I woke up in pain from the physical repercussions of my low oestrogen levels. I had my first counselling session. I cried hot, burning tears. I had flash-back. I said words I had never said out loud. I took another step towards recovery.

On this day, we all have a part to play. Whether it is taking care of your own body, paying attention to the signs, raising awareness, remembering a friend, making a donation towards cancer research, saying a kind word to a loved one fighting cancer, driving someone to an appointment or listening to someone’s story – it all matters.

And on this day, I am grateful to everyone who has been part of my cancer journey, however big or small your contribution was. Thank you. It all matters.

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.

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.