Stop hiding

[Shellygirl]

I have been cancer free for a year my last treatment was October 2016..... I still have moments when I cannot connect things in my head .... for example I want strawberries I know they are strawberries but I will say raspberries..... it’s a simple example but I find it hard to think of things the names escape me sometimes .... I was so upset to hear .... we all know you have had chemo stop hiding behind it .... does anyone have the same experience or is it just my age kicking in 😢

[Sunfleury-UK]

Can absolutely relate to this... for me, its always nouns which muddle and I can repeat them a few times without being aware of the mix-up... the only clue being the face of the person I'm talking to!

Mine started during chemo (very quickly) and was part of 'chemo-brain' it improved a lot during the first 18 months and now mostly only happens if I'm particularly fatigued.

I found it really disconcerting and unsettling to start with but as things have improved and I understand it, less so. I tend to explain very quickly whats happened and why... it wasn't caused by age but is a side-effect of chemo.

I think the most bizarre was calling my partner's glasses, 'washing machine'! Sx

[Shellygirl in reply to Sunfleury-UK]

Thanks that is so reassuring ❤️

[Yoshbosh]

Hi Shelly!

Long time, no speak.

I have the same problem and it definitely isn’t age related. Like Sunfleury, I say the wrong word without realising I have. I’m also terrible with people’s names...I’ve always been bad, but now I have to describe people to others to find out their names, and I even forgot what my best friend is called!!

You definitely aren’t hiding behind ‘chemo brain’ - it’s a real thing, and the struggle is real! I read an article a little while ago about it, and shared it with my family and friends. I’ll see if I can find it.

Vicki xxx

[Shellygirl in reply to Yoshbosh]

Thanks vicki .... I have missed my friends on this site life takes over so busy trying to get on with things time slips by .... you realise you are not in contact all you need is someone in the same boat as you to talk to brings things into focus .... how are you doing ??? Lots of love shelly ❤️❤️

[Purple_k_in_Oz]

9 months since the end of chemo and I still have trouble with what I have heard termed "word finding". I'll be talking and I just cannot think of the right word, it tends to be when I'm looking for an adjective. I listened to a podcast about "chemobrain" and said this was a common consequence. That made me feel better but I still find it frustrating especially as I am a Nurse Educator; when I am teaching and stumble or pause trying to find the right word I feel so silly! But I just own it for what it is "sorry, sometimes I really struggle with finding the appropriate word, bloody chemo brain!" and people generally accept it. Some people think they're helping by filling in the word for me.... hmmmm I wish they wouldn't but I understand they mean well!

I think what you're experiencing is quite normal and I'm sorry you've received some less than considerate behaviour from others. People who have not been in our position really have no idea what we go through.

[Shellygirl in reply to Purple_k_in_Oz]

Awwww thank you so much your words exactly describe what i am experiencing.... it’s so reassuring that it’s real I’m not going senile 😂😂😂

[Caroles1]

Hi Shelly,

Nice to hear from you,I know exactly what you mean😳

I am always starting off to say something and either forgetting what I wanted to say,or forgetting the most important word in the sentence.

I also talk about one thing ,then start talking about something completely different and get a lot of blank stares,it can be embarrassing.

Glad you are well,I'm going out shortly,but I will pm you later for a catch up,

Love,

Carole xx

[Shellygirl in reply to Caroles1]

Look forward to hearing from you.... yes it is embarrassing I set off talking and completely forget the word for something 😞

[caf132]

I also have trouble recalling facts that I know but just cannot get them out properly. I had my last chemo October 2016 just like you Shelly. some i blame on aging but i know chemo had a lot of effects on my brain. I have gotten better but not where i want to be.

Xx Carol

[Shellygirl in reply to caf132]

I think I have got better too but still like you don’t feel normal whatever that is.... I left my job one of the reasons being that I did not want to let my colleagues down as my thought process wasn’t as good as pre chemo xx

[Fahza]

Try not to be upset. Unless you have been through chemo you really have no idea how dibilitating it is. My wife Sam is having the same experience. She is getting stronger week by week and we hope that over time these side effects will be less pronounced.

[Shellygirl in reply to Fahza]

You are so right... best wishes to you and your wife chemo is such a trial to go through for our bodies and not everything is apparent at the beginning... sending support and virtual hugs 🤗

[January-2016-UK]

I am just a dumbo. Lots of silly mistakes. Losing debit card, credit cards. Put make up in the toiletry bag and then wonder why I can't find my make up. Putting normal rubbish in the recycling bin, garden rubbish in normal bin, then having to stand on chair with a rake fishing them out because arms not long enough. Put the dirty clothes in the tumble dryer; used bio in delicate items. I could go on. I don't think I use the wrong word, just can't bring the right one to the forefront of my brain and end up describing it. I do have trouble with names (even faces sometimes, so I often grin at everyone in case I know them). I think the name and faces in my case is more related to age as I've been like it for some time.

From the replies to your post, it looks as if it's fairly commonplace.

Take care!

[Shellygirl in reply to January-2016-UK]

I do a lot of describing too and then I forget words during this process too... it can be so frustrating and upsetting as you feel that your an idiot and some people make you feel that you are 😢... chemo gives us a lot of unexpected gifts it’s so good to know I am not alone ... I don’t want to hide behind the fact I’ve had cancer I felt strong and fought well but now when I’m still struggling with these odd affects I began to feel unsure of myself xx

[Hidden]

Hi Shelly I think the chemo fog goes on for years and I certainly have a build up of it, It is not unusual to forget things and get lost for words believe me. Dont be hard on yourself, I also worry as my late mother got late onset dementia at 87. I think too if we stress ourselves out too much it just gets worse. So there are plenty of us on here with that complaint, you are not alone, remember there are more people living with cancer these days rather than the opposite so doctors are only learning from us what the side effects truly are

[Shellygirl in reply to Hidden]

Thank Suzuki so glad I can back for all the wonderful advice which sets a troubled mind at rest ❤️

[Clearcell-lady]

Hi Shelly! I finished my chemo last December, and had radiation therapy for 5wks after that. I can safely say that I totally identify with what many women are going through with my brain blanking out completely for example when it comes to remembering where I had parked my car the day before! It's so frustrating! Names of friends I don't often see are lost in the chemofog too. It's good to read that we're all in the same forgetful boat! Take care everyone!

[Shellygirl in reply to Clearcell-lady]

Thank you 😊 something else we have to get used to it is reassuring I am not alone 👍🏻

[Bobbyo1 in reply to Clearcell-lady]

Hi I know what everyone means the other day I was talking about a ladies club and someone ask if Bob my husband went to a man club I said no he has not cancer yet realised what I said when I saw the shock on peoples face I ment to say he has no problems

[Lily-Anne]

Ahh chemo brain. It lingers for ages. I am losing count of the half conversations I keep having lol

LA xx

[Shellygirl in reply to Lily-Anne]

Me too think the most upsetting part is you know your not the same as you was 😢

[Lily-Anne in reply to Shellygirl]

But you will be. When I had treatment in 2012, it took a long time to feel more like me. It does come back though

[Tesla_7US]

Chemo is toxic to brain cells and causes brain damage. The side effects of these poisons have not been studied until fairly recently. Findings might scare patients from accepting to subject themselves to chemo therapy and/or radiation treatment. Some damage eases over time, other damage is permanent. Here's a link to a 2006 study that determined toxicity of chemo is permanent in some patients.

urmc.rochester.edu/news/sto...

[Shellygirl in reply to Tesla_7US]

Thank you 😊

[Pdajudy]

So we were discussing - what's it called again ? loll

Yup, we just gotta laugh. Our friends and loved ones get it - the rest don't matter!

Judy

[Shellygirl in reply to Pdajudy]

So true thank you 😊

[Sherryross in reply to Pdajudy]

Good attitude. That's how I feel Judy

[Katsmum]

Hi Shelly

I too have this strange experience particularly with nouns but it’s mostly when they don’t come to mind In the middle of a conversation that it catches me out! I have also experienced the swapping of nouns thing though not so much as just being able to recall a name of an object. It’s quite bizarre isn’t it but I usually do like others and just explain it’s chemo that does it.

Hopefully it will improve the more time we can have free of these very powerful toxic drugs but do take heart you are far from being alone on this one!!

All the best to you

Jane xx

[Shellygirl in reply to Katsmum]

It is bizarre and you have no idea when it’s going to strike 🤔

[Di16]

I also sometimes say the wrong word or can't think of the word I want to say. Although I'm 68, I don't believe all of it is age related, although I was told once by a rather opinionated man who has also had cancer treatment that 'It's not chemo brain, you're just getting older like the rest of us.' I definitely don't agree with him. Di

[Shellygirl in reply to Di16]

Me either... so annoying opinionated people 😊

[Mrs_Atko]

Ok I'm jumping in to say i do this ALL the time (and I didn't have chemo!) And i'm (nearly) 35...so can't be age? Maybe its just me. I don't explain myself to anyone...it's just me, take it or leave it Big LOVE to you hunny xxx

[Shellygirl in reply to Mrs_Atko]

Big love to you too... great attitude I’m taking your advice and saying this is me take me or leave it ... I’m staying strong 💪🏻 xx

[Mrs_Atko in reply to Shellygirl]

That’s the spirit 😁 or to quote my darling late mum’s fav saying...DILLIGAF? ‘Does It Look Like I Give A F*%k’ 😏 💋

[Sherryross]

It's exasperatingly sometimes yes it's true it happens to me so often. I am dealing with changing insurance companies now and it's freaking me out because I can't even get the right words out sometimes, communication skills have definitely become a problem

[Hidden]

Oh I have all of your symptoms and all the ladies who responded also! I call my son by my daughter's name, I call my daughter by my granddaughter's name and my partner now answers to any name except his own! I also forget commonplace words and maths simply baffles me - I spent all my working life working with numbers but it's all lost in the fog of my brain..............

I refer to the dishwasher as the washing machine, the washing machine as the microwave and sometimes I can't even remember the name of the fridge (it doesn't actually have a name per se - like Fred or Mary , just fridge)

You're not alone!

Juliet x

[Cropcrop]

Nothing to do with age (well maybe just a teeny tiny bit) it is full blown chemo brain, I’m three years in remission and still puddled (hubby says I’ve always been daft but I don’t believe him🤨) it is actually getting better but I do sudokus, crosswords, puzzles and anagram games every day to try to stretch my brain, that’s maybe helped but I still struggle with words mid sentence sometimes and as for people’s names 😬, I now call everyone Fred to avoid confusion . Don’t worry about it or you’ll drive yourself daft. Take lots of care lovely Fred, you’ll get there, hugs and love ❤️Xx Jane

[chrissapam]

lovely to read something we can all agree on...and I keep reminding myself too, that I thought my initial OC symptoms were due to ageing for far too long!

Anaemia...drug induced...can also contribute as well I've found, so eat well. Take care everyone, and remind those caring for you of the effects of poisoning. Dare them to minimise it(!) Love Chris xxxx

[ZenaJ]

Hi, I haven't read all your replies yet but I just wanted to say I'm just like that. I can't remember names and words for things. This probably won't make you feel any better but I finished my chemo 4 years ago. I was worried I had altzhiemers until someone said the chemo affected me. Funny enough I was relieved.

Try not to worry too much about it. I run the alphabet through my mind with a picture of the person I'm trying to recall the name of and this usually works.

Best wishes, Zena x

[Shellygirl in reply to ZenaJ]

Thank you it does make me feel better 🤗

[lorraine71-Australia]

Hi Shelly , The ladies have replyed to your post with the usual good advice, so by now you know it is not age related, it's true the chemo has effect us in so many way and this is just one more also my eye sight and hearing seems to be effected.

I've been on chemo for most of the last 3 years, and it's not improving my husband as supportive as he is just tells me well your getting older, that infuriates me I try to make him understand this is arfter all a poison not only effecting the cancer but are bodies a poison we unfortunately need.

Most nights I play puzzle games on my computer just to give myself some encouragement that I still can think.

So now you know you are not going senile..do take care Lorraine..Merry Chis??????? (I forget) best wishes to you and your family.xx