Searching for Answers: Looking for Someone (Else) to Blame

Blame is an interesting thing. It comes and goes, it tries to find a target and when it does not find one, it latches onto you and refuses to let go.

Ever since my diagnosis, I have been looking for an explanation. A clear, scientific reason, something to put my mind at rest. A definite answer: this is what caused your cancer. Your genes are faulty. It is hereditary.

I am not someone who believes in coincidences, in things happening at random. I don’t believe in destiny, in the universe, in a higher power causing things to happen.

I believe in science, in clear and cut answers, in data and analyses.

Womb cancer is caused by cells in the lining of your uterus (or the muscle, in some rare cases) mutating and replicating to form a tumour over a number of years. Womb cancer develops slowly. What causes those cells to mutate? Usually, exposition to excess oestrogen over many years is the main factor. This explains why women who have been through menopause represent over 75% of those diagnosed with womb cancer, and only 1% of cases are discovered in women under 40. Time and age are the main risk factor, although people with a family history of womb cancer and specific gene mutations are more at risk of developing cancer at an early age.

There are risk factors that make it more likely to develop womb cancer, factors which all increase the levels of oestrogen your body is being exposed to over the course of your lifetime: being older (the older you are, the longer you have been exposed to oestrogen), being overweight, having never had any children, starting your period at a young age or undergoing menopause late, having polycystic ovary syndrome, having diabetes. On the other hand, taking the combined pill for over three years is thought to lower your risk, and so is having children. No one reason in itself means you will develop womb cancer, and even a combination of those risk factors might not lead to cancer later in life.

I was 27 when I was diagnosed. I was overweight, I had PCOS. Both of those are risk factors – but they cannot explain why I had womb cancer at such an early age. In addition, I had been on the combined pill on and off for about ten years. I did not have any children, I do not have diabetes, I have no family history of cancer, and genetic testing showed no genetic mutations known to increase my risk of having any type of gynaeological cancer.

The doctors were puzzled. I remember the looks of shock, the disbelief on their faces. The times I was told that the results of the biopsy had been completely unexpected. When I was told there was no way it could be cancer at my age. The trainee nurse who looked after me after surgery, and was absolutely overwhelmed when I told her why I was there. She was my age.

And I was told there was no explanation for it. It just happened. Randomly. As it stands, science cannot provide a definite answer.

I hate it.

I hate not knowing. I hate it, because I can only continue searching for answers.

In the meantime, I can only blame myself.

I wake up in the morning angry at myself. Feeling guilty. Feeling like it is all my fault.

Feeling like I deserved it.

Blame is powerful. It started impacting all aspects of my life. I am angry at myself, I am disgusted at myself, I am scared of myself.

It has affected my self-esteem. I struggle to feel pride in anything I do – I just feel like no matter what I do, it does not matter. I failed myself in another, much bigger way.

Compliments make me feel awkward. People do not know how much I am undeserving of their praise.

I cannot fathom why people would want to hang out with me – I personally would not. Look what I did. Look what I caused. I am a failure and so is my body.

The only other entity I can blame is my bad karma. Let’s be honest, I have never had the best luck in the world. So these days, when I want to keep things light and make myself feel better, I tend to blame anything that happens on my karma. Cancer? Bad karma. How my operation was cancelled the first time around? Bad karma. Got burgled a month before my diagnosis? Karma. Got all my parcels stolen in my building for months, when others stayed untouched? Karma. Strong side effects to my covid jab? Karma. Wrong vaccine batch? Karma.

I do not really believe there is anything to it, but it takes the blame away from me every now and then. Pretending there is something else at play here allows me to breathe a little bit better.

I will not stop looking for answers though. I continue looking at all my leaflets about womb cancer, I read studies, I stalk the forums about womb cancer, hoping someone will have missed something. I might be in denial.

I was told that I should undergo genetic testing again in about five to ten years. Science evolves, and even though nothing was detected based on the current available science, there might be something at play here that we have not discovered or identified yet.

I am holding out hope. It seems strange, to be hoping for something to be inherently ‘wrong’ with your genetic make-up. But at least it would be the beginning of an answer. Maybe that way, I would be able to turn the page and focus on the future.

I know I am not the only one. It is common, and to the people living through the same thing, I want to say: science will evolve. It might not be the case for me, in my lifetime, but I will be the case the case for other cancers, other genetic mutations. Some of us will get answers, and some of us will not.

Well, with my luck it’s not gonna be me, is it.

Walking Down Memory Lane, Part Two: Confrontation

There is something thrilling about making yourself face your fears. An excitement that pushes you to go forward, even though you would rather stay curled up in bed with a nice cuppa. Adrenaline.

After a long week of no-sleep and exhausting anxiety attacks, of terrifying flashbacks and endless crying sessions, I finally had to take the plunge. Go into work, the place which in the last few months had become the personalisation of my cancer journey.

I was lucky enough to have a scheduled session with my cancer therapist the night before going back into the office. I had not cried that much, or shared that much of my fears in a session since my last hospital appointment. And I got more than a few tips out of it: tell my manager in advance that I might be upset, and why, allow myself plenty of time to make my way there, remember that I can leave at any time, let myself be upset rather than trying to shove it all down, breathe, breathe, breathe.

That morning was tough. I tried to stick to my routine, despite waking up before 4am. Hop into the shower, dry my hair, read for a bit, ponder going for a swim then deciding not to, so I do not have to rush to the train station. In the four hours between waking up and catchingmy train, I must have thought about cancelling a dozen times. Cried my make-up off three times, and re-applied it thoroughly. Using it as a veil to conceal my lack of sleep, but also as an incentive to keep it together. I am vain enough to not want streaks of eyeliner down my face because I have been crying.

I was a mess. I felt tears coming up on the way to the train station. I felt sick, I felt powerless. I took the same route I took the day I went into the office after my diagnosis. I walked on the other side of the pavement.

I am always late, but that day I was early. Early, and alone.

My psychologist had suggested talking to a friend on the phone on my walk from the train station to work, or listening to a podcast, distracting myself. I could not do it. I needed to process things on my own, and in the relative silence of the Buckinghamshire countryside.

That walk usually takes about 20 minutes. On that day, it took me 40.

Now, ten days later, I could not tell you what I thought about during those 40 minutes. Or how I felt. It is all a blur – which I have learnt to appreciate as I usually have such vivid memories of my bad experiences. All I know is that I made it to the business park where the office is without losing it.

I went to my building. Everything felt surreal. I was comforted by the fact I was alone. No witnesses. No-one to watch me break down.

I struggled walking up the stairs. Those stairs I climbed so many times between my diagnosis and the operation. But back then, I was never on my own, but with my friends supporting me, virtually helping me up the stairs. The five short flights of stairs up to the second floor never felt so high as they did that day.

I had to stop before walking through the doors. Looking at the stairs leading up to the roof, where I sat one day in October 2019 before going on lunch. Where, as we were alone waiting for the rest of our group, I told a friend that I had something to tell him, he would know soon enough anyway, and the friends we were having lunch with already knew – I had just been diagnosed with cancer. Womb cancer. It looked like early stage. I would be fine. He had no words, asked if I was okay, I wiped my tears and put my face back on.

I still picture myself sitting on those stairs. They have meaning now.

I walked in. Past the meeting room where I once had a breakdown mid-call and had to leave to have a cry in the loo.

Past the other meeting room where I told my dad on the phone, where I told my team in person, where they gave me an advent calendar they had made to cheer me up during the recovery time after surgery, where I spoke to HR about what was going to happen next. I did not look at the door. I do not think I will be able to step foot into that room again for a while, if ever.

It was overwhelming. Sitting at my desk. Setting up for the day. Did I want a tea, a coffee? Just water. I could hardly swallow as it was.

It came in waves. One minute I would be focused on work, the next I would get assaulted by memories. Feeling lost. Feeling the tears come up.

My manager and I went for lunch, to catch-up in person after so many months apart. But we went to that coffee shop where, every lunchtime for two months, the thought of cancer had dominated every conversation with my friends. Where I explained my diagnosis to someone in person for the very first time. Where, for the first and only time, I told someone I did not want to die.

I could barely eat. I felt hungry, I felt sick. Making new memories in a place riddled with thoughts of cancer seemslike a good idea, but also so out of reach. I wanted to try. It was probably too much for me on that day. Too many firsts, too many steps forward.

I breathed through it all. I thought of going home after lunch. The words of my therapist rang in my ears. You don’t have to stick it out. If you need to go home, if it is too much, go home.

I knew the moment she said it I would not do that. I know having the option is crucial, and I know I should not force myself to be in uncomfortable situations for longer than I need. But I am too proud, and I refused to give up. I stood my ground in my fight with my own doubts and went back to work for the afternoon.

Was it the food? Was it hunger, because I had barely eaten anything but a few bites of that cheese toastie in the last 24 hours? Was it nerves, the stress of it all? I was physically sick for the last two hours of my working day, and on the train journey home. I was exhausted, full of feelings, doubts, memories. After trying to act as a functioning human being for eight long hours, I was done.

It was too much, too soon. Too brutal. I should have given up earlier in the day. And I tell myself next time I will, I will be able to stop when my body has had enough, but I also know I will probably keep going. Because it is who I am, and I do not want to lose that little sparkle of my identity when I have already lost so much.

Looking back, I feel proud. I did it. I walked into that place which holds so many memories of my cancer journey, and I survived.

Sure, I had a bad day. I was exhausted. I was not able to follow the advice of my therapist. I was sick. I had more unwelcome thoughts and memories than on any other day in my recent past. But I did it.

I also know myself better. I feel proud of having identified, before I even went in, that that place might be a trigger. It could have been fine on the day. But I know myself. I know my mind, even just a little bit. It feels like a victory.

And you know what? The lead-up to it was worse than the day itself. The wair dragged on, a low-intensity anxiety that took over my life for a week, interrupted by full-on panic attacks. The feelings and flashbacks on the day itself were intense, but it was over after eight hours, and I was able to go home. I survived it, like I survived cancer.

I would not be able to do it again, day after day, in my current state. I felt like I needed to sleep for 48 hours after that day, and I doubt I would have been able to have another day like that without fully breaking down.

Next time, I will have more tools to help me cope with it – more therapy sessions, a better understanding of who I am and how my experience of cancer is linked to that office. I will have tried different psychotherapies.

But most of all, I will know that I can do it, because I did it before.

Walking Down Memory Lane, Part One: Avoidance

It took me a while to get this post out. I started about seven different drafts, and it took exactly eighteen days from the moment I wrote the title until I finally got the courage to finish it and the nerve to post it.

It is not my best work but I cannot stand to go over the same words again, erasing them, reworking them, rewriting them. It is ironic, considering the subject matter.

I never used to be an avoider. I liked to confront things head-on. I did not shy away from difficult situations, I strove in the face of challenges, I liked to take risks, take the plunge, run away with things.

I have changed. There are routes that I can no longer bear to take, people that I dread to see, voices that I do not want to hear.

I have known triggers. I know that if I walk past the hospital where I was diagnosed, there is a 70% chance I will be assaulted by unwanted images and memories. Sure, there are days when I feel like I will be fine. Days I know I can’t even attempt it, when I am close to tears already. And days when it could go either way. So I avoid it, I do not take the risk.

I cannot talk to my mum on the phone without being back into that room at the hospital where I broke the news to her. Video calls are fine, but sitting on my sofa, and answering the phone? I feel sick at the mere thought of it. The feeling of the phone in my hand, against my ear. The memories are vivid. I can remember the smell, the plant in the corner, the colour of the cushions. One phone call, and I am back in that room.

There are clothes I can no longer wear. The trousers I had on the day of my diagnosis, I gave to a charity shop a few months ago. The shirt I really liked, so I still have it in the back of my drawers. I hope that one day I will be able to put it on again without drowning in my own tears.

So I avoid all these things that I know will make me uncomfortable. I am not strong enough to face them head-on. I force myself to go to hospital appointments, and I find excuses for anything else that I know will trigger flashbacks and unwanted memories. I get enough random intrusive thoughts in my day-to-day life to choose not subject myself to these situations on purpose.

Until I can’t avoid it anymore.

In late May, I was told I should go to the office for one day, to pick up my new laptop.

I have been working from home (and complaining about it) for fifteen months now. At first, I was elated. The office, yay! Something different. Something I had been pushing for for a year.

I started making plans about a week in advance, arranging a day for me to go in, planning to meet my manager there, have lunch… I was so excited.

And then, on that same night I had learnt I would have to go into the office, I had one of my worst panic attacks so far this year. My brain just started remembering stuff I had pushed aside for a year, making links I had never thought of, and generally working overdrive.

We moved to that office on the day I had the biopsy which would lead to my diagnosis. The date is probably not relevant to anyone else. I had never even made the link before that day. But that means my cancer journey actually began on the day we moved into that office. The cancerous cells that would define the rest of my life were sent to the lab on the same day I rolled my pedestal under my new desk.

I spent hours replaying that day in my mind. The bus I took to the hospital, and then back home. The train I got into work. The lunch I had with my friends, where I told them about the appointment, and that ‘it looked like polyps, but they would confirm in a couple of weeks. It was probably fine though’. How relaxed I was about the whole thing. Oh, how naive I was.

Obviously, that was not enough for my brain. Over the next week, it decided to remind me of every step of my cancer journey that took place in the office.

The day I came in after hearing the news. The way my friends, my manager greeted me. The moment my phone rang at my desk – my dad calling after my mum had given him the news. How I sat crying my heart out in the meeting room. And the other meeting room. And my manager’s office. And the phone booth. And this, and that room.

Every phone call. Every appointment made, every person I told. Oh, that meeting I had with my team two days after the diagnosis. Where I sat, willing myself not to break, trying to stop the tears, to stay strong, to crack a joke that would make it feel less real. The stairs where I sat when I told a friend before we went on lunch.

The memories are so vivid. I remember every second in that office in the weeks before and after my diagnosis. Every hard, terrifying second. Every moment I wish I could forget.

I was terrified. Suddenly, going into the office seemed unsurmontable. If just thinking about it sent me into such a state, surely I would not be able to actually do it.

I was frustrated. I went back to the office after the operation and before covid sent us all home. I was fine. I was perfectly fine, I was happy. And I know there were some good memories in that office too. Decorating the place for Christmas. My friends’ support. My colleagues’ little attentions. I am crying whilst writing this. I wish I could remember those moments rather than the ones that cause me so much pain.

That week leading to my going back to the office was one of the longest and hardest I had experienced in a while. Every moment I was not focused on work, I was reliving those same memories, over and over again. I was crying at night instead of sleeping.

I thought about cancelling a million times. Surely I could speak up. Ask for the laptop I needed to pick up to be couriered over to me.

But I refused to do it. There is a time for avoidance, but I cannot let my fear, my feelings and my memories control my life.

And so I went.

(To be continued)

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.

A Number Is Worth a Thousand Words

I have always liked numbers. I hate maths, do not get me wrong – but numbers themselves are comforting. Counting makes sense. Keeping track makes sense.

I like to see numbers. Work out how many days, how many hours, how much time I spend doing this or that.

And when I am particularly anxious, when I struggle to get my brain to rest, I count. I take notes. And I write down the numbers that made up my cancer journey.

538 days since diagnosis.
473 days since my hysterectomy.

Two days until my next check up.
117 days since the last one.

Type 1.
Stage 1.
Grade 1.

31 hospital appointments so far.
Five hospitals.
Two counties.

Four appointments, three hospitals in the next ten days.

146 phone calls.

Nine gynaecologists.
Two nights in the hospital.

Nine blood tests.
Two ultrasounds.
One X-ray.
Two MRIs.
One biopsy.
One operation.

Two ovaries, two tubes, one womb.
No ovaries. No tubes. No womb.

Five Macmillan nurses.

Three therapists.
One clinical psychologist.
17 appointments to discuss my mental health.

Three prescriptions I take daily.

Six panic attacks in the last three days.
Nine unrelated episodes of tears.

One in 36 women in the UK.
Over 26 cases every day.
3% of all cancers in the UK.
The fourth most common cancer in women.

90% chance of surviving the cancer for over 5 years.

Silence or Indulgence

I have struggled to write in the last few weeks. Struggled to let my fingers fly on my keyboard, struggled to let my feelings and thoughts become public.

I feel like I have two choices.

Staying silent. Not bothering anyone. Maintaining the status quo. Keeping face.

The alternative feels like indulgence. As if by allowing myself to be open about what I am feeling, I was trying to feel a joy I am not entitled to. Making others feel bad in order to feel better myself.

It feels like I am using my condition, my issues as an excuse. An explanation to anything I might be doing wrong, I might be failing at.

I was asked by my therapist to tell people at work about the fact I had cancer last year. People I only started working with after the surgery, after I was officially in remission.

It felt wrong.

I pushed back, for weeks.

I did it the day before the deadline we had fixed.

It still feels wrong.

Silence is revered. There is grace, politeness in staying silent. Respect. Decency.

Opening up feels selfish. Forcing my struggles onto someone else. Breaking down walls, allowing people to see something that should remain private.

You draw the curtains at night so people cannot see into your house.

This is my house. It is dark. The lights are bright.

Should I draw the curtain?

I am struggling.

I want to say things.

I want to open up.

I do not want to force this on anyone.

I want to keep silent.

I want to pretend I am fine.

I want people to think I am strong.

I want people to see I am weak.

I want to scream, I want to cry, I want to forget.

I want people to talk about their own problems.

I do not want to bring people down.

I want people to be aware.

I want people to be in the dark.

I do not want to be judged because of the cancer.

I want people to to understand where I am coming from.

I do not want to tell people.

I do not know what to say.

I want to know what to say.

I want people to ask how I am doing and mean it.

I do not want to force them to hear the answer.

I want it to feel natural.

I do not want it to feel like I am complaining.

I refuse to be a bother.

It feels wrong allowing myself to open up.

It feels wrong telling people what they are happy to ignore.

It feels wrong telling people when they have no idea what I am about to say.

It feels wrong saying the words out loud, even after a year and a half.

I am not using it as an excuse.

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.

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.