Cancer is the Loneliest Word

Lonely. That word has come up in every single one of my therapies sessions.

I was alone on the day I received my diagnosis. Alone in that cold, sterile hospital room with two chairs in it.

It was not on purpose. They had not been expecting to give me such life-changing news, so they had not asked me to bring someone with me to the appointment.

Alone is how I started my cancer journey. Little by little, I let more people in (and then my mum told half the world without consulting me, but that is a story for another day).

Every message I sent, every person I told face to face, every phone call I made, I was expanding my support network. Trying to feel less alone.

I had amazing friends. Incredible support, a bunch of people who tried taking some of the weight off. Thinking for me, cooking for me, taking my mind off everything that was happening.

Friends who came to appointments with me, drove me, waited with me, did my shopping for me, brought me food and sent me cards and crafts to keep me busy. Parents who came over from abroad for the operation. Brothers who gave up their Christmas plans to come and spend it in a tiny AirBnB in Buckinghamshire.

And so it feels wrong, it feels selfish and ungrateful to say my cancer journey was – and still is – extremely lonely.

The pandemic must have played a part in this. By keeping people away for almost a year and a half, we have obviously grown apart. And very few (if any) people saw me go through the first 18 months of my survivorship.

Survivorship is about getting over cancer. Putting it behind you, learning to live your new life as a cancer survivor. It is the part people do not see, the mental struggles, the silent battle, the will you have to move forward and the constraints that your body and your mind still put on you. Learning to live with cancer, despite cancer, beyond cancer.

At first it was about learning to breathe without hurting. Remembering how to walk, how to bend, how to do yoga. How to get back to work, how to go to appointments and not be afraid anymore. It has been about accepting the reality of cancer, understanding its effects, my present, my future. And on that path, I was alone. I was working from the confines of my bedroom, then my studio, then my living room. I was having catch-up with friends via Zoom and Messenger, family group chats and hospital appointments by phone. I learnt to be myself again without someone to hold my hand and sit right next to me, but on my own.

Just like I was on the day of my diagnosis at the hospital. Alone, with my phone and my thoughts.

Now, as I see friends and family again for the first time in months or years, I realise people do not think about me the way I think about me. The pandemic has drawn a line over cancer, it has separated two distincts moments of my existence. There has been no continuity in this cancer, because people have not witnessed me going through it.

There was the Lauriane of autumn-winter 2019, the one who had cancer, who had treatment, who was on the road to recovery. And then there is a blank, there are almost two years of no contact and no seeing each other in person. Cut-off from the world for two years, people now see me as a different Lauriane. The one who is fine. Who no longer needs support. Whom we do not associate with cancer anymore. Two very distinct beings.

It is hard to feel lonely in a room full of people, but it is how I feel now, both literally and figuratively.

Literally, because sometimes even though I am physically in the room with you, I am not, not really. I have these intense flashbacks where I am reliving random (or not so random) moments of my cancer journey. Sometimes I get away with it and no-one realises, sometimes I have to rush out so people do not notice. It happened at a handful of family dinners, it happened on a dozen video calls, it happened watching football at the pub with friends. I was in the room with them, cheering England on (I know, I kmow), and then suddenly I was not. I was on my own, scared, shocked, afraid, back at square one, in my own head, and oh so lonely.

Figuratively as well, because I was the only witness of my cancer journey. Only I have the full story.

Because my family and friends do not necessarily know the full story, either because they do not want or need to know, or because I would be incapable of summarising the last two years for anyone else, I have to accept the loneliness.

There are people who I have spoken to basically every day over the last two years. But even to them, I have not been able to tell everything. The meh days, the really bad days, the days I wanted to give up, the days I wished I was more sick so people would come flocking to me like they did when I first got my diagnosis.

No-one warns you that your support network will wobble and dwindle as your body starts to get better. It makes sense that it would. As you begin to rebuild yourself, you let go of the arms of others and try and stand on your own two feet.

I feel guilty about still not being OK, and it making people uncomfortable. I feel guilty trying to shove my cancer onto other people when they would rather forget. I feel guilty refusing to put it behind me and forget all about it, when people have moved on.

I feel guilty of feeling lonely when people have done their best to make me feel safe and supported. And even in my guilt, I feel lonely.

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.

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/

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.

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.