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Have you ever experienced chemo brain?

27 Oct 2019 20:25

     In the nine years I have been a moderator at Cancer Chat, I have often seen multiple mentions on the forum of this curious 'chemo brain' phenomenon which many people with cancer who have had chemotherapy treatment seem to experience. It’s not clear how many people this affects and studies looking at this have reported a wide range of different figures. As mentioned on our website in our page about chemo brain, it can range from 17 out of 100 people (17%) to 50 in 100 people (50%). For those of you who are only too familiar with what is often known as the ‘chemo fog’, this can be difficult to manage on a daily basis and can be very disruptive on a personal level. I remember reading this story on the forum of a single mother who was having to juggle everything work, children and life whilst at the same time struggling greatly with ‘chemo brain’. It must have been really hard for her as I am sure it is tough for so many of you who are going through this at the moment.

     On a lighter note, I thought I would also mention this highly entertaining thread which recounts several chemo brain sufferers’ experiences all whilst keeping a sense of humour about it all. Meet for example @Ruth1234 ‍  who was trying to make a cup of tea and put on her washing and ended up pouring fabric conditioner into her cup of tea and almost poured milk into the conditioner compartment of her washing machine (easily done though!) or @zuzanka ‍ who put orange juice in her coffee instead of milk – and no it didn’t taste nice! Although these anecdotes will inevitably make you smile, unfortunately when you are experiencing this cognitive impairment repeatedly, the impact this ‘chemo brain’ can have on your everyday life and the disruption it may cause at work or at home can be huge. Multi-tasking for example can become very difficult and it can be so frustrating to those who experience it.

     Is this something you can relate to? We’d love to hear your own chemo brain stories and if you have any tips to share to help the fog lift even temporarily, I am sure our members would appreciate to hear your suggestions. We have some tips on our website to help you cope with chemo brain which you can read here.  Let us know if these have been tried and tested by you or if there are others that worked for you which you would like to share with our community.

 

We'd love to hear your stories and personal anecdotes on this subject! 

Lucie, Cancer Chat Moderator

Have you ever experienced chemo brain?

27 Oct 2019 20:50 in response to Moderator Lucie

Ah yes chemo brain - I started getting the fog early on in my treatment. At first I couldn't find the words for things - I spent a whole hour calling curtains 'the window coverings' because I couldn't remember the word!

My family has always had a mad way of chatting, picking up on things we started discussing hours earlier. To an outsider the conversations are probably hellish to observe however that's us and we're used to it! Since chemo brain though I've had to ask family to speak slower and discuss one thing at a time, and allow me to acknowledge a change in topic before we go off on one! Otherwise I get ridiculously confused!

Luckily I can deal with it in good humour most of the time but it is frustrating sometimes when I'm not as quick as I was pre-chemo.

I've been getting strange food cravings too so my mum makes the joke I've got pregnancy cravings and baby brain xD

 

 

Have you ever experienced chemo brain?

27 Oct 2019 20:56 in response to Ross2991

Yes, me too! Window coverings..lol! Sounds like one of my explanations....

its really odd, not being able to come up with the word you want, instead going into all kinds of descriptions...like " give us a clue" ...spelling can be difficult too, thank goodness for spellcheck! Lol....

Have you ever experienced chemo brain?

27 Oct 2019 23:13 in response to Ross2991

Thank you for sharing your stories! I actually find "window coverings" far more elegant than "curtains". I might start calling them 'window coverings' myself Happy 

Lucie

 

Have you ever experienced chemo brain?

31 Oct 2019 23:11 in response to Moderator Lucie

Ah...so that's it!!
Strangely enough I am an English teacher to foreign students and my spelling has become diabolical. Luckily, I do it on -line and have spellchecked before I post...which is what I'll do before posting this HAHAHA
On another not I have found myself talking somewhat strangely saying just stupid things. Oh, and the dreams...one from last week was twenty plant pots in a neat square with hands growing out of them clapping!!! No idea hahaha

Have you ever experienced chemo brain?

31 Oct 2019 23:33 in response to Moderator Lucie

Hard to describe it to someone who hasn’t directly experienced it but imagine the worst jet-lag, sleep deprivation AND hangover you’ve ever had - combine them, multiply by ten and that’s how it felt for me! 

Have you ever experienced chemo brain?

1 Nov 2019 13:19 in response to Moderator Lucie

I was diagnosed with multiple myeloma in Oct 2016. Initially very ill, I immediately started on 4 months of chemo and this, with the addition of copious amounts of morphine made me 'away with the fairies'.

Chemo brain, or what I call a cognitive impairment has been with me ever since. I have virtually no memory, long or short term. I defer to others to fill in missing words or to say what I want at consults.

I've lost my 'internal dialogue', which means I can't think - I can't construct a point of view or an argument, though I can be triggered to provide an already held view.

Constant fatigue and the cognitive impairment has made reading difficult - I can understand each word but the meaning of a paragraph is often lost on me and I've forgotten what I've read as soon as I've read it. Typing this is all stream of consciousness and I've no idea of what I'm going to write, it could all be wibble and I won't know until I read it back.

I literally live in the moment.

All the above is merely explanatory, I don't feel bad about it in any way. It is what it is. It also has the benefit of not allowing me to worry about anything.

I live for my family, for my kids and grandkids and they give me much joy. Apart from family, I have no ambition or desire to do anything. Many would say I've no quality of life but I'm content. I'm also in awe of what some people manage to fit into every day, though I don't feel inclined to try and emulate them.

To conclude, chemo brain is real and seemiingly in my case, permanent.

 

My best to you all

Regards

Taff

Have you ever experienced chemo brain?

1 Nov 2019 13:45 in response to Taff

Hi all it definitely got to me unless I'm going senile, before and early stages of cemo I could work out most math sums in my head easily after i have to use a calculator and struggle with what buttons to use, it has slightly got better over the years but now wear near as good as i was and short term memory is useless now i have to write everything down,. Billy 

Have you ever experienced chemo brain?

1 Nov 2019 15:10 in response to Billygoat

Talking about numbers, I once got a physical feeling that the number 7 was missing. Just that. No idea what it was missing from, just that it was missing.

Very strange.

Have you ever experienced chemo brain?

1 Nov 2019 15:44 in response to Moderator Lucie

I write a reply but it wouldn’t post. It should be simple. Is this chemo brain? I’m only 56, 2013 survivor. But see below, I worked it out. Perhaps doing this at 2:45 am isn’t a good idea. FYI I get so tired I crash and often fall asleep straight after dinner. Not just a snooze, but out for the count. If the house ever burnt down, I’d still be on the sofa. Nothing will wake me. But 6-8 hours later I am wide awake. 

Have you ever experienced chemo brain?

1 Nov 2019 15:44 in response to Ross2991

I’m a survivor from 2013, I’m now 56 and your post made me smile. The irony is, I’ll never forget chemo brain. Yes, there is a light at the end of the tunnel, which I didn’t think I’d ever see. I went to a BC forum years ago and laughed, as we all agreed, ‘Post It Notes become your new best friend.’ The worst thing I remember is the shallow empathy. If I shared my concerns, the response was, ‘Oh I’m forgetful too.’ But chemo brain was different. I would be so shaken up by it, I’d be close to tears. I also recall screaming in frustration at my husband, “You don’t get it! I really can’t remember things.” Before BC I didn’t have the best memory, especially for trivial things,but I was always on top of things and super organised. To compensate I just look for strategies. I use a notebook to jot down everything and it stays goes everywhere with me. I’m a teacher and the return to work was a huge challenge. We use Apple TV so our iPad can be shown/linked to a large TV. To connect to this, a 4 digit code would appear. I was unable to retain that code long enough to enter it. So I taught the kids to do it, reading 4 digit numbers aloud. As a result everyone who witnessed this thought I was brilliant teaching 7/8 year olds to read such large numbers. I’ve only confessed to a few people my true motivation. Hang in there, my pink sisters, use forums like this to find support. You are not alone. Cheers from Melbourne, Australia. 

Have you ever experienced chemo brain?

3 Nov 2019 23:11 in response to Taff

This is all so fascinating to read. Some really interesting contributions. An English teacher who can no longer spell, the number 7 missing, weird dreams of plant pots with hands growing out of them clapping. How bizarre... and yet for the person experiencing it, it probably all feels so real. 

@MrsRTeacher ‍ the reply that wouldn't post, maybe it's not chemo brain, it may just be technology also doing weird things sometimes Laugh

Lucie