When I was first told I'd be having Nivolumab infusions every four weeks I had absolutely no idea what that actually meant in practice. What does the day look like? How long does it take? What do you feel afterwards? I couldn't find a straight answer anywhere — so here is mine.
I'm writing this for anyone who is about to start immunotherapy and wants to know what they're walking into. Not the medical leaflet version. The real version.
It doesn't start on the day
The infusion cycle actually starts three days before the treatment itself with a blood test. Mine is at the local community hospital — I can't pre-book a slot, it's just walk-in. My current routine puts the blood test on a Friday and the treatment on the Tuesday.
The Friday blood test can be a bit of an exercise in patience. It's the busiest day and there are often only two people doing the tests rather than three. I've waited up to three hours before. The trick I've learned is to get there early, grab a number, and then either go for a coffee nearby or head home for a couple of hours and come back. Fighting the queue is pointless — working around it is much less stressful.
Practical tip: Drink plenty of water before your blood test — it makes the veins easier to find and keeps the whole thing quicker and less uncomfortable.
The nurse-led phone call
Usually on the same day as the blood test, I get a nurse-led telephone appointment. It's a brief check-in — how are you feeling, any side effects to report, anything unusual to flag. It's also the point at which treatment can be delayed if something isn't right.
Touch wood — so far every call has been fine and I haven't had to delay any treatments. That's something I'm genuinely grateful for. Each time that call goes smoothly it means treatment proceeds on schedule and the medication keeps doing its job.
The full timeline — from blood test to sofa
The infusion room
I want to be honest about this bit because nobody really prepares you for it. Walking into the infusion room for the first time is daunting. You are surrounded by people who are visibly unwell — people at different stages of very serious illness, all receiving treatment in the same space.
It's a lot to take in. The first time especially. You sit with your own thoughts while the medication goes in and the room does the rest.
I've learned to just settle in, put something on my phone, and let the 30 minutes pass. There's nothing to do but sit there and be grateful the treatment is working.
The thing that surprised me most
The speed. The first time I had it done I genuinely couldn't believe how quickly the bag emptied. I'd built it up in my head as this long, drawn out process — the kind of thing that takes hours. It's 30 minutes. Thirty minutes of sitting quietly while something remarkable happens inside your body, and then you go home.
I consider myself lucky. Not everyone tolerates immunotherapy this well. Not everyone gets through each cycle without delays or complications. I know that, and I don't take it for granted. But for anyone reading this who is nervous about starting — for me at least, the reality has been far more manageable than the anticipation.
This is my personal experience of Nivolumab infusions only. Everyone's treatment is different and your experience may vary. Always follow the guidance of your own oncology team and report any concerns or side effects promptly.
— Nick