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)

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.

A Creature of Habit

I used to be the type of person who was always up for something new. Sure, I had my favourite books, which I re-read once a year, my favourite films, which I would watch curled up in bed when I had a bad day. But I would rejoice in discovering something new, in watching something with the hope of being pleasantly surprised.

I cannot do that anymore.

In the last twelve months, I can probably count on one hand the number of films I have watched for the first time. For every single one of those, I read the plot first, I researched the synopsis, I looked for a detailed summary, I searched for spoilers.

Instead of starting new TV shows during lockdown, I have re-watched the same ones, again and again. I call them my little obsessions, and watch the same episodes several times over, sometimes in a different order, sometimes restarting series from the beginning. I know exactly what is going to happen. I find comfort in the lack of surprise.

I have read the same books over and over again, so much that I got sick of some of my favourites. So I bought new ones, and I jumped straight to the end and read the last few pages before coming back to the beginning.

What am I afraid of? Everything.

I have never liked surprises. I have always delighted in reading spoilers on purpose before watching the new episode of a TV show (except for that episode of The Good Wife – I was not ready). But I used to like finding new, exciting stuff to watch, new authors to follow.

Now, I am afraid that something, somewhere, will be a trigger and send me into a dark place. I try, sometimes. I watched the new series of Queer Eye in the spring, settling on the sofa with my coziest blanket and a cup of tea. It is one of the most heart-warming shows ever, and I had loved the previous series. There are a number of episodes that I still watch when I am feeling down. But I was not able to enjoy the new series. Every minute, I was afraid someone was going to mention their experience with a life-threatening disease. Terrified that I would be able to relate, that I would see my own experience on TV, see what my family might be going through, what could have been. Convinced it would send me in a world of tears and anxiety if it happened – and it did.

Whenever I watch something new, I am on edge. I cannot relax. You never know when a trigger is going to appear. I do not even know what all my triggers are. Sometimes, it will be a character talking about having lost a child, and my brain will start going crazy, imagining what my parents could have felt like. Some other times, it will be someone mentioning how they got their scars, and I will think about mine, about having to explain to someone how I got the four purple lines on my stomach.

Some triggers are both obvious and insidious. I was reading a new book the other day, something that was supposed to be short and light-hearted. I did what I always do, read the summary, read the ending. All seemed fine. So I started, and halfway through the book, it was revealed that the main character had had cancer, and had turned her life around after getting better. That was a punch in the gut. It was not the main plot point. It was in the background, it was a way for the author to justify the character’s anguish and struggles. But it moved me to tears, and all I could do for the next couple of hours was curl into a ball and wait for it to pass, taking deep breaths, trying cognitive behavioural therapy and only getting more frustrated when it did not work.

It is exhausting, to constantly be on the edge, to know that you might break down at any moment and be terrified of when it could happen. It takes so much energy, so much brainpower. And it is physically draining too – my whole body tenses up, I grind my teeth and do not breathe correctly. It is impossible to relax.

I have developed obsessions, because they are comforting. They allow me to feel safe, to feel protected. To have a break and to escape, if only for a few moments, the ‘deep, aching sense of dread’, to quote a line from Schitt’s Creek. No matter how many times I re-watch that gem of a show (and trust me, it is close to a dozen now), I know how it is going to go. I know where I will laugh, where I will cry, where I will love. I will know the lines, I will be able to anticipate and prepare myself for the feelings that are to come. There a lot of triggers for me in there, so many moments where I shout at the TV ‘that’s me!’ – usually when someone is being overdramatic for no reason at all. But I know they are about to happen, and I am ready for them.

I have read each of The Dharma Bums and On The Road twice since the beginning of the year. It brings back happy memories, it brings back moments of my life where I felt like nothing could touch me, where my biggest worry was whether I would be able to finish my essay in time to go out with my friends. I read Harry Potter again in the spring, because of how safe it felt.

I know I should try and widen my horizons again. I cannot keep watching and reading the same things over and over again. So I will give it a go every now and then, but always with the same care – read the plot summary, try and know of any major spoilers before I make a start. Get a feel of how it might affect me, so I can make sure I will not break down when the time comes.

I have tried asking recommendations from friends, and getting details out of them before I start reading or watching something new. It is hard, because small details which they might not notice will send me over the edge. I struggle putting my triggers into words, so I cannot ask them exactly what I need to know, what I need to avoid. It is also not fair on them – I do not want my friends to focus on my issues when they are relaxing.

It will probably take quite a bit of time for me to feel comfortable discovering new stories. In the meantime, there is an old season of Gilmore Girls calling my name.