‘Chemo Brain’ is really really interesting because there’s been a long history of patients complaining about it and people rather ignoring it because it’s not ‘sinister’. Everything to do with cancer is ignored if it’s not about the illness itself. These things were seen as small problems on the way.
After chemotherapy, there is definitely a loss in concentration. Whether this actually reflects a change in capacity, I would need to check. I think the problem is that even after you’re diagnosed, you’re in this trauma state. You’re dominated by other thoughts and your processing capacity of just taking in new information, working memory, all of those things, is reduced because so much of your computing capacity is taken up just processing what’s around you with questions like ‘Will I die?’ ‘What will I do?’. There is an argument that one of the problems is the processing capacity.
I do have patients who say they find it very hard to get back into reading books, concentrating — but they have been through a trauma. I don’t know if it’s drugs? Or trauma? Or both? With cancer, your timetables change, your food regime changes, your sleep has changed… It could be a bit of everything coming together.
I’ve been caring for people with cancer for 30 years and only recently heard the term Chemo Brain. I think it’s generated by people with cancer talking to each other. It’s a cancer-sufferers or -survivors terminology which is not a medical language. It seems empowering that it comes from the grassroots and not that it originates from a doctor.
Once patients have the term, the label Chemo Brain, it makes sense of a lot of their experience. Just as the cancer diagnosis, in a way, makes sense of a lot of the symptoms which have lead up to diagnosis. For many, diagnosis is a relief. Similarly, by saying ‘Oh, it’s Chemo Brain’ – behaviours are allowed whose causes were previously unknown. With cancer, you can’t trust your body, you can’t trust your memory. In a way, Chemo Brain is like a medical term for disillusion – a term for the overall loss associated with cancer.