Clear Margins

The Dissociates

29 December 2022

This time last year I got my cancer diagnosis, between Christmas and New Year. The part of the hospital I’d been told to go to was in darkness when we got there, we had to put the lights on, and the only person we could find wasn’t convinced I should have an appointment there, because the normal clinics shut down for the festive period.

The registrar who was giving me the news was on call and picked somewhere she could reach for a chat between whatever emergencies she had to attend. She didn’t want to delay setting the tests and treatment planning in motion for me so just made it work as quickly as possible.

I had surgery in March and have so far not needed further treatment. However, two weeks ago my oncologist thought something looked suspicious and did some tests – it turned out to be scar tissue and I'm being left to get on with it for another few months unless symptoms arise.

When you get a diagnosis of something big like cancer that kind of takes over, you get used to medical procedures becoming a normal part of life. In the time that's passed since my surgery, I've clearly shifted out of this mode and back into "normal" life, so the experience of having to jump back in (briefly as it turned out) was revealing. 🥴

TL;DR

• Dissociation is a thing
• Mindfulness of the body helps
• One day you will die
• Accepting this can make life more enjoyable
• Brain and body disagreements are a riot

Who me? Aye you

When I first got my diagnosis I thought I’d processed it in a pretty healthy way. I’d prepared myself. Knowing from experience with relatives how dangerous denial is, I was determined to accept whatever was happening to me. I found it easier to keep it together than when it was happening to people close to me. There seemed to be an imperative to stay calm, because that might literally affect the outcome of whatever treatment I needed to go through.

In those early days I didn’t feel any self-pity, no “why me” or anything like that. I’d always assumed I’d get at least one cancer if I was lucky enough to live long enough, perhaps not quite this young, but I’ve been exceptionally lucky with my health otherwise so wcyd.

The only time I felt sorry for myself was a week before my surgery, when my partner caught covid, having avoided it for the previous two years. I had to immediately get out of the house and the surgery was postponed for a week (luckily I didn’t test positive or it would have been put back several weeks, which could have been enough time for the cancer to advance). Having that support taken away from me, and having to drive myself to the pre-op appointments all over Glasgow, it started to feel a wee bit cruel! In the end I was able to go home a few days before the op and prepare the way I’d planned. 😅

Girl, bye

When I realised I was going to have to leave my home and go into hospital for the scariest experience of my life on my own, I knew I was dissociating from reality. I don’t know who drove the car away but it wasn’t me haha. Dissociation is a habit I learned as a child, a trauma response I’ve never managed to fully shake. Looking back now I wonder if I was doing it from the moment I got the diagnosis.

Over the past couple of years I’ve meditated more and more regularly, trying to get better at non-attachment. Although this has been of great benefit to my mental health, I sometimes find that in the moment, I can’t tell whether I’m practising non-attachment or dissociating. 😵‍💫

Getting back in

This summer I went on holiday to Corfu, where I swam every day. Swimming helps me with body mindfulness, and being in the water after cancer surgery plus >2 years of going nowhere during the pandemic was truly magical.

But the more time I spent in the water, the more I realised I’d shelved. I’d had zero emotional reaction, either when I got my diagnosis, or when I got the news that the pathology following my surgery showed no evidence of disease (meaning I didn’t need further treatment). Everyone around me was having extreme emotional reactions good and bad to the rollercoaster, but I didn’t really feel anything.

Opening the box

Over the past few months I’ve ramped up the meditation big time, really fully committing to it for the first time. At first, becoming acutely aware of my thoughts was kind of a horrorshow to be honest, Pandora’s box was open and what I saw wasn’t pretty lololol. 40 plus years of not processing traumatic experiences had created a hell of a mess to wade through. 😱

After a couple of months, I started to feel more peaceful, then wee hints of joy started to peek through and gradually become more consistent. It was like a concrete block I had to chip away at to get at the sunlight behind it, or a champagne cork giving way to overflowing goodness if you prefer. 🍾

The fun keeps coming

Which brings me to the last couple of weeks. I went for what I thought was a routine check-up I’d be in and out of without another thought of cancer until sometime next year. When the oncologist said something didn’t look right and we’d need to test it, I genuinely felt positive. I’ve learned that I’m a hope for the best / prepare for the worst kind of person. Not that I think I can control whether I get sicker or when I die, but so that whatever conditions present themselves, I feel able to make the best of it, whether I have weeks, months, or decades to go.

I'm learning to commit to the process, without being attached to any particular outcome, because I can't control that.

When you get “bad” news about a health condition, there’s a tendency to focus on that to the exclusion of all other factors. The fact is that you will one day die, so when you get a cancer diagnosis, the question isn’t am I going to die (the answer to that one is yes lol), it’s more a case of whether this disease is likely to be on the death certificate. 🙃

By starting from an acceptance of ill health and death, my focus has shifted to the quality of what happens while I'm here.

The treatment planning consultation for my surgery was a bit challenging with this mindset. Research had shown that less radical interventions have an only marginal reduction in five year survival on the pathway that was recommended. (Five year survival doesn't mean they think that's all you've got, it's just when they stop counting.) In spite of this, most patients prefer the more radical option, even though it has a significantly increased risk of side effects that can reduce your quality of life. I definitely don't want my life to be shortened, but quality of life also has a high priority for me within that balance. It's complex! Luckily the consultant was open and able to talk that through honestly with me, and we reached a plan I felt happy with.

Greetin-face

When we were driving home from the hospital two weeks ago, it was hard not to feel like history was repeating itself and that I needed to prepare for a new round of treatment. The winter sunset was incredibly beautiful against the landscape and I found myself starting to cry. Not sad tears but joyful appreciation of how wonderful life can be, and a desire to have more of it, however greedy that makes me!

I thought I was doing great, staying positive and being open to whatever was about to happen, but as the days passed I started getting a wee bit jumpy whenever the phone rang! When my dentist phoned from what looked like it could be a hospital number, I must admit my heart rate took a while to drop. 😰

Two days before Christmas, my oncologist took the time to phone to tell me the biopsy was fine and I don't need checked again for another few months. He wasn’t actually meant to phone for good news (they are ridiculously overstretched and have to prioritise aggressively) and had warned me I’d only get a call if something needed done urgently, that I’d get a letter if everything was fine. Given the time of year and postal strikes this would likely have been in Jan, but he wanted me to know so that I could enjoy Christmas. ♥️

Is that right aye

When I got the call, I was on my way to a long dental appointment, and was going to be late if I didn’t move, so I decided to shelve my reaction until later. That was six days ago and I still haven’t quite got around to it, so it seems I still have work to do lol.

💡 Bonus fact: This blog post is a lot longer than I'd have liked, and I feel weird about even publishing it for that reason. But here's the thing, it isn't work, it's a personal blog I write for myself so wtf am I worrying about. As a chronic people pleaser I shall chalk this one up as progress. 💅🏻