A Number Is Worth a Thousand Words

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

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

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

538 days since diagnosis.
473 days since my hysterectomy.

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

Type 1.
Stage 1.
Grade 1.

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

Four appointments, three hospitals in the next ten days.

146 phone calls.

Nine gynaecologists.
Two nights in the hospital.

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

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

Five Macmillan nurses.

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

Three prescriptions I take daily.

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

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

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

Silence or Indulgence

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

I feel like I have two choices.

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

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

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

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

It felt wrong.

I pushed back, for weeks.

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

It still feels wrong.

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

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

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

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

Should I draw the curtain?

I am struggling.

I want to say things.

I want to open up.

I do not want to force this on anyone.

I want to keep silent.

I want to pretend I am fine.

I want people to think I am strong.

I want people to see I am weak.

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

I want people to talk about their own problems.

I do not want to bring people down.

I want people to be aware.

I want people to be in the dark.

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

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

I do not want to tell people.

I do not know what to say.

I want to know what to say.

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

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

I want it to feel natural.

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

I refuse to be a bother.

It feels wrong allowing myself to open up.

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

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

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

I am not using it as an excuse.

Erasing the Stigma of PTSD

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

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

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

PTSD Can Affect Anyone

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

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

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

It did not pass.

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

The Stuff of Nightmares

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

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

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

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

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

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

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

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

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

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

I am tired.

We Are Not Alone

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

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

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

Useful links:

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

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

https://www.ptsduk.org/