The Great Unraveling

There are many stages of grief and they don't happen in any kind of linear predictable way.

The emotions just arrive in waves. Some completely overwhelm you, others may just create a ripple. Some stay for an extended period. Others pass by quickly and then, they might turn around and come back, just in case you missed them.

Shock and Denial

I began my cancer journey in shock. There was a sense of numbness and a self-protective detachment from my feelings (probably because they were too intense to deal with). I kept on trying to do normal things (pretty unsuccessfully) because the news hadn't fully sunk in yet. In the first week or so I mostly told everyone I was all good, this was just another opportunity to learn and grow and strengthen my faith. I did my research, I waited for my flow tests results, I attended doctor appointments - but I compartmentalized. I kept a space reserved for this, but I did not allow it too much space in my conscious.

The Vortex of Despair

And then, as the days and time allowed my reality to sink in a bit deeper, I felt myself despairing. Undone by confusion, uncertainty, fear.

I started to entertain thoughts that I would most definitely have all the worst prognostic markers. People say this type of cancer is chronic, but for me it wouldn't be. It would be quick and unresponsive to treatment. I started imagining all the sicknesses I would suffer as my blood was consumed by mutant white blood cells. I started to imagine dying. Soon. While my children were too young. Leaving my husband alone. What it would be like to say my goodbyes while hooked up to some kind of machine beeping for me? I started to feel everything in my life was hopeless. I started wondering if it would be better to finish the race now rather than have to live in a game of Russian roulette for the next 10 years. At least then everyone else would be free to get on with life; without me.

I love making plans. I love having things on the calendar to look forward to. I'm intentional with my time and I like it to count for something. Now, as my emotions spiraled, I felt I had no time left. Could make no plans. Had nothing to look forward to. Because there was nothing I could cling to with certainty in the future, I started filling in the blank space - with all the worst case scenarios. Tell me all you like CLL is chronic & treatable - my mortality still hit me like a tonne of bricks: I'm too young, I'm not ready to die.

Rock bottom

One miserably low evening I just sobbed and sobbed, trying to explain to Anton how helpless and hopeless I felt. How everything in my world was literally unraveling. That my world had just caved in completely. How I had no strength, no fight, no will, no determination to pick myself up. That I just needed to get off the train for a bit. In the film world, this moment is called the dark night of the soul.

Anton knew that and just held me. Sometimes there are no words for another persons pain.

Processing

And in a film, after the dark night of the soul, a new dawn breaks and we break into Act 3 - the momentum toward redemption! The next morning, from my collection of cancer pamphlets, I pulled out a small buried one which generously offered a retreat for patients and their carers. When I had first read it, I had put it aside, telling myself I wasn't sick and wouldn't be needing that. But now I knew I needed the opportunity to get away from my life and responsibilities so that I could process this properly. Before imposter syndrome got in the way, I emailed them and within a week, we were off for a weekend to a beautiful spot to let ourselves really talk, really feel, really unravel, so that once the pieces were all on the floor, we could consider how to put them back together again.

Acceptance and Hope

Then hope and faith arise. Around that time of retreat and reflection, the idea of this website was born: Courage, Love and Legacy. A way for me to start accepting this new reality, construct something positive around it and create an opportunity to find and offer hope. Refreshed and renewed I found strength to reconstruct my CLL diagnosis and begin to accept its impact (good and bad) on my life.

Courage, Love and Legacy

Any kind of cancer diagnosis is likely to leave us reeling. We will all go on this journey of grief and loss differently. And it is a grieving process because things have changed in our world. Things have changed in our body. We're having to let go of stuff, hopes, dreams, plans, and expectations. New and unexpected limitations have been introduced to our life. For some treatment is imminent. For others it might be years off.

It's likely that as we progress through the journey, we'll end up back here, unraveling again at different times. I don't expect to ever get the hang of this completely. Just like if we loose someone, even years later, we can suddenly find ourselves crying for the loss of them in our lives. I imagine I'll find myself here again when the inevitable blood test shows accelerated grow of my white blood cells; just like a new sign of cancer after years of remission would for someone else.

Recognising where how we are feeling at any given moment can be really helpful as we process loss and grieve. When our emotions are in the drivers seat they can take us anywhere, sometimes into very dark places. When we notice them and name them, we can take back the wheel. When I sat in my dark night of the soul and told Anton I felt hopeless and helpless and needed a break, that's when I realised I needed a break! When I noticed and named how I felt, I found a need. And that was one thing I could do something about.

Wherever you're at on the journey, take a minutes right now to just sit with your feelings. How are you feeling right now? Notice it. Name it. Consider what you might need because of that feeling. And then I'd challenge you to share it - with a friend or with me in the comments below.