Chemo brain

[Platelets2022]

Hi does anybody else struggle with what is called chemo brain?

[DrunkJam_UK Administrator]

HI,

My husband *definitely* has this (So much so, he also has regular annual memory clinic check ups, just in case.)

You, your body, mind, and anything else have been / are going through a LOT, so it is not surprising that "chemo brain" is a thing.

One of my top tips is to carry a small notebook and pen everywhere, so if you know you might need x information again you can write it down straight away. This also might build a handy to do list which you can feel extra productive by crossing things off as appropriate.

I hope you are also able to take time and have space to think about and talk about all the ways your life have changed, and how you might need to process that, and adapt etc. Don't expect that to just happen, and you deserve time and care to come to terms with everything.

If you need to talk, Leukaemia care has a nurse you can telephone most days. Your CNS will also be a great source of advice and help. Leukaemia Care also has a buddy scheme which can pair you up with someone with experience of similar things (some people find it easier to talk this way)

[Platelets2022 in reply to DrunkJam_UK]

Thanks Drunkjam. I have recently started working a few hours from home and have had to buy a note book which has been useful. I have just signed up for the buddy scheme. Did think about counselling but I feel this may be better as we are all members of a club that nobody wants to be in and only if you have experienced it can you truly understand. I have brilliant family and friends but I think talking with somebody who has gone through it. Have started driving again which brings me a great sense of normality. I hope your husband is doing well. Have a good weekend.

[tpbholm]

Yes, I certainly have this. I struggle with my memory all the time - I forget names, events, places, pretty much anything. Frustratingly it’s not consistent - I don’t forget the same things all the time.

I also have problems word finding - things come out in the wrong order, or I have to restart a sentence. I’m learning to slow down and get my thoughts in order before I speak. My wife is very patient and understanding and will help me when I need her to, but she’s also really good at waiting and giving me time when I need it.

It’s frustrating but the advice given in the previous reply is excellent. All I would add is be kind and patient with yourself.

[Platelets2022 in reply to tpbholm]

Hi. Thanks for replying. I too have similar issues with finding the right word or forgetting what I have gone upstairs for and like you it can be different issues each day. It feels very similar to having 'baby brain' when pregnant! Some days are worse than others. I do try and laugh it off and comment if other people do it by saying I've had chemo what is your excuse 😆. We do need to be kinder to ourselves. Have a nice weekend.

[RossH]

personally I don’t think so. Although I do have the symptoms docs say that it’s unlikely as I am so far past BMT now.

I need to write things down, forget why I am in the room, remembering names etc.

Who knows - maybe it’s something I just need to deal with.

For many though this is a real and massive issue.

[2003UK Champion]

Hi I have been lucky enough not to have Chemo, I have heard it often talked about.

In my case there are other things things that can cause similar symptoms like getting older and urine and other infections ( frequent with my compromised immune system).

My philosophy is if anything medical is concerning me it is always worth getting it checked out with someone medically trained.

Look after yourself

[Platelets2022 in reply to 2003UK]

Thank you. I hope you are having a good Friday.