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.

Erasing the Stigma of PTSD

I must have been about 16 when I first heard about PTSD. It was on an episode of Grey’s Anatomy, one of the very few storylines I still remember more than 10 years later.

Like so many other people, at first I was convinced that PTSD was something that happened to people in the armed forces, something that veterans suffered from. A mental health condition which, unlike depression or anxiety, would have very little chance of one day affecting me.

It took a few years for me to encounter it in another context. I remember reading that someone famous had suffered from it, and thinking ‘they haven’t been to war, that’s not it. They’re exaggerating’. As I got older, I realised how wrong I had been.

PTSD Can Affect Anyone

Post-traumatic stress disorder can affect anyone who has had a traumatic experience. And any situation that someone finds traumatic, even if it would not necessarily have been considered traumatic by someone else, can trigger post-traumatic stress disorder. An accident, childbirth, the loss of a loved one, assault, those are just a few examples of events that can lead to PTSD.

PTSD can happen at any time after a traumatic event. It usually starts within a few months, but it can sometimes take years to develop, even decades if memories have been buried deep.

The first time someone told me it sounded like I was suffering from PTSD, I shrugged it off. They were the words of a friend, in early summer 2020. I was only a few months out of surgery. Surely it was normal to feel anxious, to replay conversations in my mind, to see the same scenes over and over again, to be easily triggered, to have excessive emotions, to feel numb, to refuse to talk about my situation, to avoid places and people that reminded me of cancer. Surely, it would pass.

It did not pass.

In August, a psychologist told me they believed I could be suffering from PTSD. All the symptoms I described to them, my daily struggles, were consistent with an anxiety disorder, low mood, and trauma-related mental health conditions. Post-traumatic stress disorder was a likely culprit.

The Stuff of Nightmares

I will not get into the details of all the possible symptoms of PTSD – I am not medically trained, and there are so many resources online that can offer help and advice (I will link a couple of them at the end of this post). All I can talk about it my experience of trauma, the symptoms I have that are consistent with a diagnosis of PTSD, and how it affects me at the moment.

I have had regular flashbacks for months. Moments when I lose track of where I am, and find myself reliving parts of my cancer journey. I am irritable. For months, I felt completely numb. Now, I have all of the emotions, all of the time. I have insomnia. I live in fear that something bad is about to happen. I startle easily. I avoid places that remind me of cancer. I feel sick talking about my diagnosis. I get triggered by the smallest thing – a picture of an ultrasound or a letter from the GP in my letterbox. Smells, noises. Lights.

For the last few weeks, I have been dealing with one of the nastier symptoms of PTSD: nightmares. They happen every single night, at least once, sometimes three or four times.

I will wake up feeling panicky, exhausted, sweaty, terrified. Some of the nightmares are very clear – they are memories of the worst moments of the last few years that will play in my head, over and over again. So much that I feel lost. I feel like I am back in those horrendous months before surgery. I will be reliving hospital appointments, tests, results. Sometimes they are painfully close to reality, sometimes I get told my cancer is terminal. Sometimes I do not make it out of surgery. Sometimes I learn that someone I love is going through what I did, not me.

Some of the nightmares are only vaguely related to cancer, but feature hospitals, bad news and people getting hurt. They are disturbing, sometimes violent, they often end with me walking around aimlessly. I get lost in hospitals. I wait for hours in a waiting room that gets darker and darker.

Have you ever been terrified of closing your eyes? Have you ever cried of exhaustion, knowing at the same time that you would get no relief when sleep would take you? Have you ever been afraid of what your brain would make you go through when you needed a nap?

I fear sleep. Every night, I push back the time when I will actually go to bed, because I do not feel ready. I do not want to face the nightmares again. I do not want to wake up after a couple of hours, even more tired than when I went to bed, craving the thing I also want to avoid.

Each night, the cycles repeats. Fight sleep. Push back my bedtime to 10pm, 11pm, 12pm, 1am. Fall asleep, sometimes despite myself, sometimes with the lights on. And wake up, after a couple of hours, feeling absolutely spent, frustrated, heart racing and tears all over my face.

I think the most I have slept on a single night, in the last three weeks, has been about five hours. These days, it is closer to two or three hours a night.

And as a result, my symptoms during the day get worse. I am even more prone to tears, even more irritable, even more disconnected from reality. Even more likely to have an anxiety attack for the smallest thing.

I am tired.

We Are Not Alone

I know so many people with PTSD. Friends, family members, slight acquaintances. I have read about so many more people having it, living with it, trying to overcome it.

Our experiences are all so different, but they are all valid. Do not let anyone tell you you cannot have PTSD because your situation was not traumatic enough in their eyes. Do not let yourself think you cannot have PTSD because your trauma was somehow less than someone else’s.

Trauma is personal. Trauma is subjective. Trauma is welcome to pack its bags and go away.

Useful links:

https://www.nhs.uk/conditions/post-traumatic-stress-disorder-ptsd/symptoms/

https://www.mind.org.uk/information-support/types-of-mental-health-problems/post-traumatic-stress-disorder-ptsd-and-complex-ptsd/about-ptsd/

https://www.ptsduk.org/

Rebuilding My Identity, Finding My Voice

People often say that serious illness made them reconsider their priorities. That it made everyday troubles, fleeting friendships and things they had previously enjoyed seem unimportant. ‘Did it change your whole outlook on life?’ is a question I have had to answer more than a handful of times. Did it?

At first, I barely noticed it. During treatment, I was intent on sticking to my well-established routine. Get up, have a shower, put my face on (even though I was probably going to end up crying my make-up off), get dressed. Hop onto the train, get to work. Put in exactly the same amount of effort I would have prior to my diagnosis. It was comforting. I could pretend nothing had changed.

I was adamant that I was still the same person. I did postpone some things – I had considered moving abroad again, a change of scenery. That was no longer an option, but I told myself it would still happen – in time. Cancer was a fleeting period in my life, I would be able to give it a start date and an expiration date, frame it neatly and fold it away.

But as the months passed, and as I started realising that cancer was more than these few months I had spent waiting for treatment, that I would be living with the aftermath for years to come, it became obvious I was lying to myself. My priorities did change, they are still changing, but not in a way I had been expecting.

I did not have a big revelation one day. There was no dramatic declaration, despite my penchant for the theatrics. None of these things you see in films, with someone suddenly quitting their job and deciding to go on a trip around the world. No leaving my flat to go live on a farm and breed horses. No sudden, rash decision, no promise to dedicate my life to God, to find everlasting love, to go back to my family.

The changes were subtle.

My previous blog post was all about how I have lost myself. I do not recognise myself in the mirror, I am a shadow of who I used to be. I lost so much of my identity over the last seventeen months (seventeen months – my cancer is a toddler!), that I had to rebuild it from scratch. It is a long process. Some days, I feel more lost than found. Some days, I feel like I have not even started the process.

And to exist, to find and fight for my identity, there are things that I cling onto.

They are the causes I care about, the ideas that I stand up for. In forgetting about myself, I have only made these ideas stronger in my mind, and as I am rebuilding who I am, I am focusing on these things I am passionate about. They are the only things that make sense, the ones that keep me going, the beliefs and engagements that are strong enough to support my weight, help me reconstruct a whole new identity, and still be myself.

I have always been politically aware. My parents might not have passed much of themselves onto me, but that is one thing they would not let me forget. How important it was to understand politics, to stand for what I believed in, to fight for my voice to be heard. Their political stance might be a lot milder than mine (they are, after all, late boomers), but the idea was there. The world matters beyond yourself, and you must fight for it, you must fight for equality and acceptance and tolerance, and for a better world.

I tried not to allow myself to be overwhelmed by what was happening to me and forget about the rest of the world. Yes, there have been times in the last year and a half when I have wanted to scream ‘this is about me’ at the top of my lungs. When I have wanted to close my eyes to what was happening around me, to the pandemic raging around me and say ‘think about ME, think how bad I have had it’. But instead of changing my priorities and focusing only on myself, I have directed most of what little energy I had towards the things I believed in.

I am a feminist. I am a left-wing environmentalist. I am involved in all sorts of movements fighting discrimination, be it based on gender, race, or sexual orientation. I spend hours and hours reading about it all, trying to understand what I don’t know, trying to help by increasing my awareness and knowledge. I want to work, and keep working so that people understand cancer better and help others have a better experience than I did.

There is also a selfish reason why I do that. It helps me find purpose. I find reasons to keep fighting, I feel like I belong somewhere. When speaking about these things I care about, I see tiny little sparks of who I used to be, and of my true self. I find a voice again – my voice. I am no longer my body, I am no longer the fun-loving, easy-going girl I was a couple of years ago, but I can still fight for my ideals.

I am more radical than I used to be. I am more quiet in my personal life, and more outspoken about the causes I care about. And I am quite happy about that.

Cancer did not change my whole outlook on life. It did not change my priorities. What it did was break me down into a million pieces, and as I am putting them back together, they take a slightly different shape.

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?

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.

If I Be Weak

This is how the chorus of one of my favourite songs goes: ‘If you be weak / Then I’ll be strong / When the night is long’. Later on comes the counterpart: ‘If I be weak / Won’t you be strong / When the night is long.’*

I used to listen to that song a lot, back in my late teens and early twenties. I listened to it with the arrogance of youth. I did not understand how someone could be both strong and weak at the same time. In my head, I was and would always strive to be strong, to be the one comforting everyone else. I was able to carry the weight of the world on my shoulders. I liked to pretend that the second chorus, that question about whether someone else would be there if I broke down, did not exist.

I had very old-fashioned ideas about what strength was. For me, strength had always meant not showing vulnerability, being reliable, being able to prove myself, rising to the challenges thrown my way without ever admitting how much effort it took. I spent years and years trying to prove I could do everything by myself. Being strong meant doing everything, and doing it well. I am highly competitive, and I have always strived to be the best at everything I did – giving up things that I enjoyed but had no natural talent for because I would not ‘win’, be it against myself or someone else.

I have spent the last thirteen months (happy thirteen-month anniversary to me – officially my third-longest relationship ever!) constantly oscillating between wanting to show how strong I am, how I am keeping it all together, and wanting to break down, to admit that I am weak and need other people to help me stand. It is a real balancing act. I want people to see me as someone strong, secure, reliable. But I also want them to see the cracks and acknowledge they exist, even if it makes them uncomfortable.

Some people acknowledge this weakness. It is the only thing they see. I had that revelation just a couple of weeks ago, when I received a letter from the GP advising me to call and schedule an appointment to receive the flu vaccine. I had received another one a couple of weeks earlier and ignored it – not on purpose. I simply forgot about it, because of how ludicrous it felt. After all, I am 28. I have never struggled with the flu – I get it every couple of years, spend a couple of days in bed with a fever, and have aches and a bad cough for a week. And that is it. Why would I need to have the flu vaccine? Surely other, weaker people could benefit from it more.

And then it hit me. Doctors see me as a person who is at higher risk. In their eyes, I am one of those weaker individuals. I need to be protected, to avoid adding to the numbers of hospitalisations over the winter months. I am not a normal 28-year-old anymore. I am different than I was eighteen months ago, when I was a healthy individual, for all intents and purposes. (Well, it is either that or the NHS spent so much money on getting me cured of cancer, they would be pretty pissed off if I then died of the flu) And so I booked an appointment at the GP, and I finally got my flu shot. My arm has only just stopped hurting. 

But that is just one point of view, the one of health professionals who know one aspect of my life only: the one where my body has let me down. Not everyone sees things that way.

The thing that makes me the most uncomfortable is hearing people tell me how strong I am. Of course, it is a perfectly standard, commonplace thing to say to people who have had cancer. If you have ever said it to me, please do not feel bad, do not feel like you did something wrong. I have said it to many people in similar situations. I will probably say it to others in the future. But it makes me cringe every time, and I want to be open about it.

Hearing that feels both like a compliment and a slap in the face, a duality which is exacerbated by the fact that I am responsible for people thinking of me that way. After all, I am the one trying to project that image, and still I am the one cringing when people recognise it, I am the one feeling sick, like I have been telling a lie that people believe. To quote a phrase that I have been using in every blog post so far – it makes no sense. I am happy to hear that people feel that way, see me that way. It makes me proud, it makes me feel like I am not as much of a failure as I feel most days. But it also hurts, because it feels as if they do not see how much I am struggling. They are ignoring my pain, ignoring the fact I was not cured with a simple snip of the scalpel, that it does much deeper than that. It feels like they will not allow me to be weak, they will not allow me to tell them I am not coping. Instead, I feel like I need to keep pretending, again and again. Keeping up appearances, forever.

But it is ok to be weak. It is normal. It does not mean I cannot be relied upon.

I remember when I first told my team at work. There were tears, there were words of support. But over the next days and weeks, I realised they had started avoiding telling me about their problems. They wanted to spare me. They wanted me to focus on my own issues, they felt like their work wobbles, their doubts, their personal troubles were somehow less relevant now. But it was not the case. I still want to be able to help and support everyone. My team need me. My family need me. My little brother needs my shoulder to cry on, he needs my enthusiasm, my support, my help to prop him up during a difficult time in his own life. It is a struggle, because I only have so much energy and emotional capacity, but I like it. I like knowing I will be there when they need me. ‘If you be weak, then I’ll be strong / When the night is long’

It is very contradictory. I do not want people to treat me differently because of cancer, but I also do. When I let people in, when I tell them about the last year, it is not because I somehow want them to feel bad for me. I do not want, I do not need their pity. What I need is for them to understand that, despite everything I show the world, I am also weak, and I need them to be strong for me. I need shoulders to cry on too. I need support. I need to be allowed to be weak. I need to know I can let go, and that things will not fall apart when I do. I am a broken vase that has been hastily put back together. I am vulnerable, but I still hold my shape. I need you to be there, super glue in hand, for the next time a crack opens up, and water starts pouring out. ‘If I be weak / Won’t you be strong / When the night is long’

*Armistice by Patrick Wolf. A masterpiece that has been playing on repeat on my phone and in my head since 2011.