Chemo brain is defined as: a condition characterized by loss of memory, an inability to multi-task, and difficulty concentrating.
We can only write about our own experiences of ‘chemo brain’, and hope that it eases the minds of many who may think they are going crazy! Leanne and Hannah attempt to explain.
It is difficult explaining chemo-brain to others who haven’t experienced it. People try to compare it with ,’ getting older’, ‘it happens to everyone’, ‘I’m not sick, and I forget stuff’.
True… those could be valid reasons, but for those who have been through it and can relate to the frustration of forgetting the right words to say, remembering tasks, feeling like your brain has been ‘numbed’, it is much more than a ‘tired brain’.
The loss of memory is probably the most frustrating for me. I've been submitted to countless different types of chemo for multiple cancers, radiation, an allogeneic bone transplant and new immunotherapy drugs, I feel that the change to my brain is a definite thing.
It’s not like I forget everything - I remember appointments, what I’m doing during the week, people I’m meeting etc, it’s the little things that annoy me.
If I get asked to do something - for example, at work as a teacher, in a passing conversation, and then I get interrupted on the way to the classroom, I can safely say that I’ve probably forgotten what I was meant to do. I know this happens to ‘normal’ people too, but I feel that it is way more common in those who have had treatment.
I'm so bored with saying, “I can't remember”. To everything, all the time. A programme, a conversation, an event, a person, another conversation, words, the list goes on. I'm also bored of hearing, “are you sure you don't remember ?”, and “but it was only yesterday/last week/this morning”. Yeah. I'm not making it up, I’d love to remember. Trust me. I try really hard to reach the place in my head, to claw through the thick fog by scrunching up my face. Sometimes I pluck something out, and sometimes something so weird comes out. Sometimes I grasp at nothingness. It's frustrating because I can often see it beyond the fog but only small parts and in mixed up order.
Talking is difficult. Painful. Embarrassing. I often can't finish a sentence, or mix up the order of words, can't think of names of things ( and I'll say what's it called when …., What's that thing that…) and I have a pretty good vocabulary so it's not forgetting words that's the issue. It's getting them out of my head and into speech that is difficult. The path is broken; words disappear down potholes on their way out.
The most helpful thing I have found is writing notes. Post-its are the best! In working life, they are my saviours! I’m not saying that I walk around with them in my pocket or my fridge at home is covered in them - I just find that if I have them around, they are a reminder in themselves of ‘Do I need to remember something?’ It definitely helps with multi-tasking, planning and organising.
Prioritising ‘things to do’ in a list (but not too big!) helps focus on the things that need to get done.
Again, these are great tools for everyone, but when your brain is unfocused and gets tired, that little bit of extra help is all you need to feel slightly more sane!
My calendar on my phone is such a great tool. It saves me lugging around a diary and I chuck in appointments and reminders on the spot. Not really sure what to do about memories and other vital information beyond the foggy wall!