Redefining Normal

Do you remember what it feels like to be a teenager? When you start noticing your capabilities. When you believe you finally have choices, or at least feel entitled to them, only to be quickly humbled by your parents. Or when you’re convinced you know it all, and that the information they’re offering is old, outdated, and irrelevant to your world.

That’s me today, at the beginning of my thirty-fifth year.One month and ten days since the diagnosis. I am living out my new reality with CML. Appointment after appointment. Information layered on faster than I can process it. Hopeful and grateful, yet frustrated and limited at the same time.

One of the biggest symptoms leading up to my diagnosis was a strangely shaped, bloated stomach. Usually, bloating in women sits in the abdominal area. Mine didn’t. It sat under my left rib cage, and something about it always felt hard. Unmovable. Wrong.

It turned out to be my spleen. Enlarged.

A normal spleen measures somewhere between three to five centimetres. Mine was twenty-three point five centimetres, collecting an abnormal amount of white blood cells. I am one hundred and sixty-three centimetres tall, and when I was admitted to hospital, I weighed fifty-seven kilos. My spleen became the talk of the haematology ward. Specialists and professors came in to see it. They asked politely if they could feel it. They even asked if resident doctors with upcoming exams could come and learn from it. In a moment like that, and for someone like me, it was strangely humorous. Even a little prideful. I could teach someone something. My hospital days became a story. A lesson. A memory.

My spleen has since returned to a normal size. My white blood cell count is back within a normal range. I’ve been on the medication of choice for four weeks. I feel stronger than I have all year. I feel like things will be possible again soon. I feel incredibly lucky....

The six-week appointment said otherwise.

The medication has helped stabilise some vitals, but it has also suffocated my bone marrow. My bone marrow has been fighting the cancer for an unknown amount of time, and now the medication has added pressure instead of relief. The experts have seen this story before, so the advice is clear.

We stop the medication.

We allow the bone marrow time to recover and heal.

I receive another blood transfusion to support that process.

We wait four to five weeks to ensure my vitals rise and stabilise.

Then we start again.

Weekly testing throughout.

How do I scream in the middle of this hospital that I feel fine?Yes, tired. But fine.

I have things to do. I know this is a priority, but I still have things to do.

How do I tell the people around me to stop asking how I am when apparently I cannot be trusted to answer it myself? I don’t want to break hearts, but I also don’t have the right answers.

How do I ask my loved ones to listen better, when I may have already told them exactly what they are asking again? How many times have I been guilty of this too? Is it just human nature to hear what we want to hear?

My family is on their tiptoes. It feels like multiple people trying to ballroom dance, all attempting to find a rhythm for a dance that is meant for two. How do I tell them I love them deeply, but I need space? That I want their help, but I need to feel like I don’t need it. Am I trying to be too strong, or am I just trying to be myself?

Until July sixteenth, I lived in another state from my family. From that day, I moved back temporarily. I could not ask them to uproot their lives for me, and I knew Peter MacCallum was where I wanted to be treated. My family’s support deserves its own piece one day. They have been magnificent. But at thirty-five, as a woman, there is an unspoken expectation that you should be starting your own family, not moving back in with your parents and adding to their load. My parents have never made me feel like a burden. Society, however, carries that perception quietly.

My independent life is on hold.

I work in software, so working virtually is possible and accepted. I am earning an income, and if anything, I’m working harder than usual to keep my mind occupied. I am not exercising. I am not eating whatever I want. I am revisiting end-of-year plans because I don’t know if I’ll be able to take them. I don’t want to socialise, yet there’s an exhibition opening this week that I desperately want to see. But I can’t risk a cold or flu. I don’t have the energy anyway.

I am building better slide decks. Time indoors, in front of a monitor, has become a place where I can still elevate myself. I question the “what for” often, but I keep doing it anyway.

I’ve put on a little weight. My mum has made it her mission to meet every dietary requirement. She is determined that good, home-cooked food is the key to getting my vitals up. She isn’t wrong. I love her for it. People tell me I’m looking better. And I catch myself wondering when I stopped being asked how I was feeling instead.

Maybe this is what redefining normal looks like. Wanting your life back before you’re allowed to have it. Feeling capable while being constrained. Strong, but not in control. Independent, but deeply reliant.

I am not regressing. I am recalibrating.

This stage of the story is uncomfortable, untidy, and loud inside my head. But it’s also honest. And if there’s one thing I’m learning, it’s that this version of strength doesn’t look calm. It looks like listening. It looks like choosing patience when everything in me wants to rush ahead. And it looks like learning how to live again, without pretending nothing has changed.