The loneliness of having a child with cancer…

Before Betsie started chemotherapy, I didn’t realise how much of my identity lived in the small, ordinary rhythms of social life. Texting friends about weekend plans. Popping out to meet with friends. Saying “yes” without checking blood counts first.

Now everything is filtered through one word: chemotherapy.

While Betsie goes through chemotherapy for leukaemia, my world has become both painfully small and emotionally enormous. Small because infection risk means we can’t just “pop by.” Small because crowds, sniffles, and even well-meaning hugs can feel dangerous. Small because hospital schedules dictate everything.

And enormous because the fear, the logistics, the mental load — they take up all the air in the room.

What I didn’t expect was how socially disorienting this would feel.

When I do venture out to see people, it often feels like I’m stepping briefly into a parallel world. They’re talking about holidays, renovations, office politics, school projects. I nod. I try to listen. I even want to care. But part of me is thinking about neutrophil counts. Or whether Betsie will spike a fever tonight. Or the fact that our “plans” depend on how she feels after her next infusion.

I feel like I don’t fully belong in either space.

At the hospital, I’m surrounded by other parents who understand this language of survival. In “normal life,” I’m the one with the sick child — the outsider. The conversation stopper. The person everyone is a bit careful around.

It’s isolating in a way that’s hard to explain unless you’ve lived it.

Chemotherapy can be so unpredictable. Betsie can seem okay in the morning and be wiped out by afternoon. Or her counts can suddenly drop. Or we get a call that changes everything. So I cancel plans. A lot.

I cancel meeting friends. I cancel birthdays. I cancel dinners. I cancel because she’s too tired, because she’s vulnerable to infection, because I’m too exhausted to string sentences together.

Every time I send that “I’m so sorry, we can’t make it” text, I feel like I’m slowly disappearing from people’s lives. I worry they’ll stop asking.

Sometimes they do.

And then there’s a different kind of ache — the ache of not being included, even though you understand why.

There’s also the strange emotional mismatch.

Someone complains about a bad day at work. Someone’s frustrated about a delayed delivery. And I genuinely don’t judge them — their problems are real to them. But inside, I feel so far away.

My baseline has shifted. My “hard day” now involves cannulas, anti-nausea meds, and watching my daughter endure something no child should have to endure. So when I try to engage in everyday conversation, I feel wooden. Out of sync. Like I’ve forgotten the script. And then I feel guilty for that too.

Socially, I often feel pressure to be reassuring. To give updates with a positive spin. To say, “She’s doing okay,” even when okay is fragile. I don’t always know where to put the full truth — the fear at 2 a.m., the exhaustion, the quiet panic before test results.

Sometimes it feels like there isn’t space for it.

And sometimes I don’t have the energy to explain it.

So I shrink the story down to something manageable for other people. But shrinking the story also shrinks me.

I miss being spontaneous.

I miss saying yes without calculating risk.

I miss being the friend who shows up consistently.

I miss the version of me who wasn’t constantly scanning for danger.

Chemotherapy doesn’t just change your child’s body — it changes your social landscape. It redraws the map of who you see, how often, and how deeply you can connect. And the grief of that is real.

But here’s what I’m also learning…

The friendships that survive this season become more genuine. The people who keep texting, even when I don’t reply quickly, or sometimes at all. The ones who don’t take cancellations personally. The ones who drop food on the doorstep and don’t expect a long conversation. The ones who can sit with the hard stuff without trying to fix it.

Those connections feel different now. Less frequent, maybe — but more honest.

I’m also learning to give myself permission not to be socially “on.” This is not a normal season. Of course I’m struggling socially. Of course I feel different. Of course my capacity is reduced.

I am parenting a child through chemotherapy. That is not a small thing. I’m trying to survive something enormous…

Right now, my job is to be Betsie’s safe place.

If that means my social life looks different — quieter, smaller, slower — then that’s the season I’m in. And maybe surviving it, honestly and imperfectly, is enough.