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)

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.

Hospital Appointments and Fearing the Unknown

I had another flashback last night. I was splashing water onto my face before bed, reviewing the pros and cons of reading the next chapter of Barack Obama’s A Promised Land to fall asleep versus listening to the audiobook – an internal debate I have had every night for the last two weeks. I closed my eyes, and when the water hit my face, I was back at the hospital, after my diagnosis, thinking cold water could help me make it feel real, hoping it would drown my tears.

There had been no warning signs, no triggers that I could have identified and nipped in the bud. I opened my eyes and gripped the sides of the sink, trying to regulate my breathing. You are ok. You are at home, this is just another evening, this is your night-time routine.

There had been no warning signs, but I am fairly sure it is related to the fact that, at the moment, hospital appointments are the only thing on my mind. I am terrified of them, I think about what could happen at my appointment next week about six times an hour. It is no wonder my brain finds random associations with everyday activities, like splashing water onto my face. Trauma is no fun.

I have been thinking about the ‘why’ of it a lot. Why am I obsessing over the simple idea of an appointment? Why can I not sleep, eat or have fun for days and weeks before each one is supposed to take place?

It is simple. I have no idea what is going to happen, and so I cannot project myself in the future. I cannot make plans for after the appointment, I cannot anticipate how I will react, what I will do.

Oh, I know what the appointment is going to entail this time. I had a similar one just three months ago. A chat with the doctor, a physical check-up, a catch-up with the nurse.

I also know that the risk of them finding something wrong is low. I know that I probably would have had symptoms if something was not quite right. I also know that the risk of recurrence is low.

The issue is that throughout my diagnosis and treatment, more than half the appointments did not have the outcome that I had expected.

There was the appointment where they broke the news to me, where I was woefully unprepared.

There was the surgery that did not happen.

There was my appointment at a menopause clinic in early January, where, because the operation had been delayed and the final staging had not happened, they were not able to provide me with a plan for hormone replacement therapy. I took a 4-hour round trip to Oxford on public transport, just two weeks after the surgery, barely standing and walking, only to be told I would need to come back at the next available appointment, two months later.

And there was the final staging appointment. The one where, on 13th January 2020, I was asked to come to Oxford again to discuss the results of the operation, and talk about further treatment. My friend had come with me and, because we had arrived a whole 30 minutes early, she went to get a coffee whilst I checked in. Less than two minutes later, I was called in by the surgeon.

I did not know what to do. I told him that my friend had just gone to get a coffee, should we wait for her? He said he thought I would be fine on my own, which I took as a good sign.

I knew that appointment could go one of two ways. Either they would confirm the original stage and grade of the cancer (which had provisionally been declared Stage 1A, Grade 2), or would tell me that they had actually found more, or different cancer cells on the tissues removed during the surgery.

I had prepared myself for both possibilities. I had told myself I was ready either way. And still, the outcome was different than anything I could have expected. I sat down opposite the surgeon, and he quickly went through the surgery, telling me it had been a success. That the cancer was confirmed as Stage IA, Grade 1. I blinked. Excuse me, Grade 1? The surgeon nodded. I interrupted him again. I had been told after the initial biopsy that the cancer would be Grade 2, what did that mean? And he confirmed that the grade had been lowered as the immense majority of cells appeared to be Grade 1 after examination of the tissues removed during surgery.

I was floored. It was excellent news. It would mean I would not need any further treatment. I would be able to have HRT. As the surgeon said, removal of my ovaries had only been indicated as they believed at the time that the cancer was Grade 2. The surgery had been more extensive than would have been strictly necessary.

It was good news, but it was once again hugely unexpected news. I had not imagined that lowering the grade of the cancer would even be an option. How was I supposed to react? I had trained my brain to deal with all the potential outcomes, but not this one. It just solidified the idea, in my already traumatised mind, that anything can happen at one of those appointments. Good news, bad news, anything at all.

The unknown is terrifying. You spend so much time preparing for any eventuality, only to end up being taken aback by something you could not have expected.

For my last check-up in August, I had taken time off work in the week leading to the appointment. I went on a very short solo holiday, coming back the night before the appointment. This ensured that I would be busy, doing things I enjoyed and keeping myself distracted up until the day of the dreaded appointment. It worked – kind of. I only had two panic attacks on the day – one in my bathroom as I was getting ready, and one at the hospital, where I completely broke down in front of the young doctor who was checking up on me (keeping my fingers crossed it will be a different one this time – I think I terrified the poor man).

This time, I will be taking a different approach, working right up until the morning of the appointment. Will that help keep my mind busy up until the last minute? Will I be too distracted? I can only try, and find something that works for me. After all, even if all goes well, there are still four more years of regular check-ups to come.

So that is what terrifies me. My brain works overtime at the moment, trying to imagine dozens of different scenarios and doing its best to anticipate what could happen. There are honestly not enough hours in the day to compute all the possible outcomes and imagine how I might react, preparing my feelings, my reactions, what I will tell people. All the while knowing that no matter how many different potential outcomes, there might be ones I have not thought about. Ones that I will not be ready to face.

Bring on Wednesday.

Talking About Cancer – The Power of Words

Cancer is big. If there is one thing that we can all agree on, it is that cancer is massive. When you first hear the words, it upends your life in a second. And then, it starts affecting the people around you, your friends, your support network, your family, people you had not thought about. And what I have come to realise is that we all have one thing in common: we struggle to find the right words to address cancer, and discuss it.

Does it come from a place of fear? The word ‘cancer’ itself is unnerving. A couple of years ago, I told off my older brother, who had started using the phrase ‘c’est cancer’ (‘it’s cancer’) to say ‘that sucks’. He had picked it up from some French gamer on Twitch, and was using it so much it drove me crazy, and not just because it is grammatically incorrect. I told him it made me uncomfortable, and I think that was because of the power I gave that word. In my mind, ‘cancer’ had always represented something horrendous, something so severe that the word itself made me feel scared.

I have now come to terms with it. I can say the word without feeling anything, without feeling scared or crying. It is everything else that I struggle with.

There is no right way to talk about cancer. There are no right words, because they all feel wrong. They feel like they should not have been uttered. They feel private, they feel hurtful, they feel dangerous.

From the moment you decide to talk to people about your condition, you have to be careful what words to use. How to even start the conversation. I think every time I told someone, I started with some version of ‘I just wanted to share something with you – I have had some bad news. I was at the hospital the other day and […]’. I felt like that was a good start. It prepares your audience for what is to come. It is not as abrupt as coming out and saying ‘I have cancer’ straightaway. By making it into a story, with an introduction, by setting the tone and narrating it like a tale, it almost made me feel like I had it together. It was a story, it had a beginning and a clear narrative structure. And when the word ‘cancer’ appeared, whoever I was talking to was not taken aback. I had led them there, and made their experience more peaceful than my own.

When talking about what happened to me, I am so careful about the words I use, the sentences I write. Consciously or not, I make a choice every time I talk about cancer. Just take the first sentence of this paragraph. ‘What happened to me’. That was a deliberate choice. Making it sound like something that came upon me, diluting the message by using a vague concept. It does not sound as real as ‘when talking about cancer’, does it? And it puts me in a passive role, a spectator to my own life. Just think about how long it takes me to write these blogs if I think about each word for that long.

I have always tried to find the right balance between melodrama and a cautious indifference. Depending on who I was talking to, I would adapt the way I spoke about cancer. I would speak about it freely with a couple of friends. I would tone it down for people at work, stressing that it was probably ‘very early-stage cancer’, even before I knew that for sure. I spoke about ‘treatment’ at length, without going into the details. I barely ever uttered the words ‘chemo’ and ‘radiotherapy’, even when I was discussing potential post-surgery treatment. I did not find comfort in the medical terms. Hysterectomy, FIGO stage, adjuvant therapy. They always felt cold, almost too severe for me. I am not a medical professional. If I had not been personally affected by cancer, I probably would not have used these words. By not using them, I was hiding from their reality, and it helped me cope for a while.

I also struggle with tenses. It does not feel like much, but I freeze every time I want to say ‘I had cancer’. Should I say ‘I have cancer’? Should I say ‘I have had cancer’? None of them feel right, and all of them feel right at the same time. I am not out of the woods yet, but I also do not technically still have cancer… Or do I? In my previous article, I typed the word ‘remission’, and only then did I notice that I had completely banished it from my vocabulary. It is an ugly word. It is a word that denotes the limbo I currently live in. Neither ill nor cured. Cancer might still be here, in my body, dormant and menacing, quiet and deceiving. I will try and use ‘remission’ more going forward, because it is the word that defines me best. I will get used to it, I promise.

There are other words that come to mind. I already spoke about the duality of the word ‘strong’, and how uncomfortable it makes me feel. ‘Cured’ is another one of those. ‘Lucky’. ‘Depression’. The list goes on. But there are also words that make me happy (ok, they are mostly the names of baby animals, I will never say no to a discussion about meerkittens and otter whelps).

It is true not just for me, but also for people I talk to every day. I am going to go out on a limb here, and say that I do not think that anyone (apart from health professionals) has said the word ‘cancer’ to me in at least six months, at least in reference to me. And I have discussed it with plenty of people. I have used it myself. I speak to a few of my friends about it directly at least once a week. Is the word taboo? Do people avoid saying it because they are afraid of it, or afraid of how I will react? I will say it here – you can say cancer to me. You can even say it three times in a the mirror – I promise I will not come and haunt you.

People are so careful around cancer patients, worried about saying the wrong thing. But just so you know, there is no need to tread on eggshells around me. You can say anything you want. I have lived through it, there is nothing you can say that will shock me, that will trigger a reaction in me that I do not already trigger in myself twice a day.

Words are a big part of this, but talking about cancer goes beyond just that. It is an uncomfortable topic in general. I will see you at the weekend for a blog about how to make light of cancer – because we all need it sometimes.