Hi. I am 42 years young, and completed chemo almost 9 months ago. I am finding that in the last month especially, I am more tired in the afternoons (eyes feeling like they’re hanging out of its sockets and brain feeling like it’s been fried) and when having conversations, I forget clients names and have trouble getting words out. Would this be chemo brain? I’m interested to hear what symptoms people have had that is ‘chemo brain’. Thanks

And here is me thinking it is only me that can't remember the name for the "thingy". I went into Bunnings just the other day for a plug for my kitchen sink and couldn't find them. Very nice older man came up and asked me what I wanted. I said I needed a bath plug. I knew it was wrong as soon as I said it but could not think of the correct name. I said you know where I do the dishes? We had a good laugh, he is another cancer survivor, I got a lovely warm hug...was a good day.

SWell, I forgot my PIN number and burst into tears in the bank...mortifying. Forgot names or mixed them up a la Freudian slip. Called my daughter in laws mother by the step mother's name...yikes!!! Any word with more than four letters became the "thingy". Cutty thingy - scissors. Click thingy - remote control. Pully outy thingy - tweezers. Sucky outy thingy - USB stick. (it sucks information out of one computer and spits it out into another). Also typed letters in the wrong sequence (still do). Not fat finger syndrome where the next door key is presses, but the correct letters in the wrong sequence. Phos for shop. dlich for child and so on. Very noise sensitive...came very close to madness from neighbour's yapping dogs. Super elevated startle reflex...someone drops something and I almost collapse. It has improved but some things are still there, like the typos.

For me, a year out of chemo, it has become a "two steps forward, one step back and dance a little on the spot" thing. I'm a librarian and words are my thing but they are often tantalisingly out of reach and my spelling has suffered badly. Some things have disappeared into a black hole seemingly forever (anything to do with King Lear, a text I had to deal with when I first got back to work) is not in my retrievable memory at all. In some ways, this is a good thing (ha ha!, I hear you laugh) because it means that I ALWAYS check anything to do with this. I also try never to trust now that I KNOW something - I generally do know it but I feel better checking that I've got it right. Going back to work terrified me and a lot of it was to do with fatigue and cognitive dysfunction. And I did make some blunders but nothing huge, thank goodness. I recognise now that I went back too soon for me. On my psych's advice, I started to better record what I was doing whether it was written down or doing something mindfully. In the past, my notes were mostly for other people but now they are definitely for me and that can include names of things or people. This has been a major learning curve and something that has been a bit difficult to accept. I also have to be careful when I get too many interruptions, particularly if it is to solve problems, as my resilience is just not there. I can easily become frazzled and start making mistakes myself particularly later in the day as I get tireder and things build up. My boss was on leave for a few months and another person joined the team. She's lovely but does not recognise the need for breaks (not in a mean way, but will keep asking questions about work) and I HAVE to have those breaks now to recharge. Now that the weather has improved, I have started going for walks or just sitting outside sometimes during my break times - better for my health but really important for my ability to concentrate. If all else fails, I have been known to take a few minutes longer in the loo - no-one bothers me there.So, my advice for what it's worth... Go easy on yourself. If you work with others, let them know if you feel you can. Try to devise some strategies such as notes or mindfulness to help you get through memory lapses. Insist on your breaks to recharge even if all you can do is walk to see someone rather than make a phone call. Go easy on yourself. Recognise those memory areas that have gone AWOL completely. Keep a thesaurus tab open on your computer. If things are getting too much, find something to do that will allow you to get time out on your anxiety and get it under control. Did I say, go easy on yourself?

40 years old and 1.5 years post chemo here. I have the same word/name issues as everyone else has mentioned. I also have an impaired short term memory. If I get interrupted in the middle of a task, I will completely forget what I was doing and sometimes don't remember for days. Quite the problem at work! I'm training myself to ask people to hold on for a tick while I write down a reminder of what I was working on. If you use Outlook at work and are mainly desk based, I'm a huge fan of "Ctrl+Shift+K" for making a quick note that goes in your task list.

Chemo brain - what are your experiences?

16 Replies

ddon
Member
6 years ago
I am thankfully not trying to work (other than the books for my husbands business which I have always done from home) but I am struggling with my brain and emotions that are all over the place. The difficulty for others being empathetic I think is that we look ‘normal’ and otherwise well - apart from my ongoing baldness - and they can’t see what’s beneath. And, it’s impossible to describe in words how we are feeling mentally and emotionally and so for me anyway, I just seem vague and scatterbrained and my eyes leak with very little provocation. I was a strong, reasonably intelligent and very capable woman before. I don’t know if she will come back one day but right now she is curled up in a cupboard somewhere hiding and refusing to come out.
KayB55
Member
6 years ago
As always thank you for all the things you guys write. It is just so helpful to look and see what others are going through and then I don't feel so bad. I am post chemo, radiation, operation etc. 6 months now since chemo and am on tamoxifen. All going well except for my brain. I have returned to teaching but this term has been pretty terrible, quite apart from the shutdown and the extra work that involved. The things that have taken a hit are my emotions and confidence. I cannot multi task, some new procedures I just do not grasp and understand, I used to be able to write wonderful comments about students but these are now terrible so I have to go back to the comment bank. While people seem a bit empathetic, most are not, they just have no idea what is going on in my head, neither do I. I think as someone has said, it is tiredness. It is the end of a very busy term, my first one back. I have to keep reminding myself not to make some major life decisions quickly. And that, perhaps things will improve next term. Regards
joanned
Member
6 years ago
Even after 5 years my brain is foggy especially if I am really tired or run down. Just started a new job and worked 9 days straight so had to be honest and tell them that it would take me a while to recall some things and people are really understanding . Find good to take magnesium in capsules.
And good to have sticky handy.
Nefertari
Member
6 years ago
And here is me thinking it is only me that can't remember the name for the "thingy".

I went into Bunnings just the other day for a plug for my kitchen sink and couldn't find them. Very nice older man came up and asked me what I wanted. I said I needed a bath plug. I knew it was wrong as soon as I said it but could not think of the correct name. I said you know where I do the dishes? We had a good laugh, he is another cancer survivor, I got a lovely warm hug...was a good day.
Blossom1961
Member
6 years ago
Chemo brain solution
arnlybub
Member
6 years ago
I was trying to tell my colleagues something my oncologist had recommended for hot flushes but for the life of me I couldn't remember the name of it. I was poking my workmate in the arm over and over saying 'you know - those sticky in things' poking her ferociously. Eventually they clued in that I meant acupuncture and needles. Talk about embarrassment .... not to mention the bruises I caused to my workmate!
Sister
Member
6 years ago
I was trying to remember the title of a book that my son had also read so asked him..."um, do you remember the name of that book about those guys doing something - it was by that author?.." I was eventually able to come up with some nouns that made sense and he told me the title, but really?
LIttleBlueWren
Member
6 years ago
Next week it will be one year since I finished chemo.
I haven't had any problems until this week, I have forgotten many words in the past few days. I am putting it down to being tired and a little bit of stress. Hope it goes away soon. It is interesting and sometimes amusing trying to describe things, bit like playing charades all the time. 😀
Karenhappyquilt
Member
6 years ago
Similar experience to others. In addition I have noticed I don’t cope with stress well. It completely throws me. I suppose getting older doesn’t help either.
Brenda5
Member
7 years ago
I am 3.5 yrs on from chemo and stopped hormone therapy a few months ago. I think I need to accept my short term memory is impaired forever. It's gotten about as good as it can get now which is better than the none I had. The reaction to the chemo infusion I had on one day I think may have done brain and heart damage. I have had the heart check by a specialist and now take tabs for it, but not the brain. Every so often there is a loud snap in my head. I don't know what it is and often wakes me up and the snap only occurs once so I am left laying there going wtf? It doesn't seem to have pain involved though so thats good.