Chemo Brain

Hello All. In 2013 I went through 16 rounds of chemo, 4 A/C and 12 taxol at 31 years old. I believe my Chemo brain \ fog has really progressed. I worked through my entire treatments, only took off for 6 weeks for the mastectomy, even did my radiation treatments on my lunch break. BUT I'm seriously thinking I need to go out on disability due to the chemo fog I have been experiencing lately. Has anyone else felt this way?

31 Replies

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  • I finished nine and a half months chemo last June followed by 25 radiotherapy with a double mastectomy. I am still off work. I have been advised to take early retirement as the oncologist will not sign me as fit for work due to the stress that comes with my job and the fact I still have active cells and am triple neg. I am dreadfully forgetful, still have bouts of fatigue and my concentration span has reduced to that of a gnat. I was against the early retirement initially but now I realise that I could not do my job effectively and that my own health would be further at risk. I hope you come to a decision that suits you. I keep busy reading, painting, writing, raising money for cancer research and enjoying every day as much as I can. Time to enjoy life now xxx

  • Thank you for replying! I truly appreciated hearing your story and I know I'm not alone in this, my co-workers just can't understanding why I'm so frustrated with it and it's even hard to speak to them about it anyways. I appreciate your comments very much. ❤❤

  • I've only done four rounds of chemo, although fairly strong ( also TNBC metastatic). Even so I have gone from a multi tasker to a mono brain! My husband jokes that now I know what he has felt like all his life. I hate that my brain has ceased to function as usual. Also my eyesight has deteriorated and the nausea persists on and off ( usually when I'm tired). Oncologist would love to keep me on chemo, but as there's no 'cure', it would just keep it down a bit until the body can't take more, I'm rejecting the idea. Enjoy life whilst you can ladies. Rest and relax. Love to you all - it's a tough gig this damned cancer! ❤❤❤❤❤❤❤❤🌺

  • Hi Jacbowden

    Hope you're doing OK & the Chemo Regime isn't too taxing on you? Hope you are enjoying your Summer, pretty bleak here in the U.K.

    Take Care 💐

    Angela 😘

  • Thanks, I'm currently refusing more chemo. Trying to get the body back to normal, if possible. 🌺

  • Hi

    Stephaniemartinez

    I had/have cognitive impairment following FEC/T Chemo & it really shocked me as I always considered myself intelligent, quick to solve a problem or answer a question & well able to multitask.

    I found I could not think about anything else while doing a specific task. Then my husband kept correcting me when I'd mix names up, oddly enough it usually started with the same letter! I couldn't remember the names of some things e.g. the names of a song or the group/singer, and although I'd think I knew what something was called l couldn't find the word when holding a conversation.

    When l couldn't remember how to use Word or Excel on the PC I wept with frustration & when I had no idea how to fold a jumper to put it in a suitcase, I was devastated.

    I used to know what I was doing a week or two ahead but I had to start checking my diary everyday, sometimes more!

    So, I discussed this with my Oncologist & he said it was unlikely to improve, that was five months ago & when I see him next month l can tell him I am improving!

    I've now set about relearning things when I realise l've forgotten them, Thank You Google!

    I now find once I have a clue, it's like having a key to opening up a box of memories, so I take my time & insist l am not interrupted when I'm doing something.

    I watch 'The Chase' & now I'm keeping up with The Chaser a lot of the time & even if I can't verbalise it l'm happy if I know the answer.

    I prefer to meet my friends on a One to One basis so l can concentrate & l keep the catch up to around two hours.

    I do however, refuse to call it Chemo Brain it demeans how awful this actually is, so l give it its full title ~

    Cognitive Impairment.

    There are huge holes in my memory though, I've no idea what presents I've bought people, l don't remember many birthday dates except my husband's & my boys; I like peace to write & l struggle with words/spelling which I never did before.

    I know I'd never have been able to hold down my job as it was too demanding as l needed to able to think on my feet, but I'd already taken early retirement so it hasn't been an issue.

    So after pouring my story out to you, I believe that you need some time to yourself, you've been through a big ordeal & continued to work through most of your treatment.

    I think the shock of the diagnosis has to be processed & l wonder if that has any impact on what happens to our brains & our way of thinking?

    If like you, you carried on pretty much as normal & continued to work or like me swept everyone along in a cloud of perfume, glamour & a determination not to be anything but Myself 💋 through out my treatment, it will eventually come along & catch you up somehow!

    You're much too young really to give up work completely but maybe some Time Out may be the way forward?

    My Very Best Wishes To You 💐

    Try n Chill n Relax

    Angela xx

    Mrs N 💅🏼

    Sorry for the Epistle it's the first time I've ever really talked about it, so Thank You 💐

  • Thank you for sharing that Angela ❤️ I could be reading about myself in parts there. I too watch the chase and many other quiz programmes as I feel it helps me. I have also downloaded 'peak' an app that uses games and quizzes to help improve cognitive ability, Memory recall etc. It also keeps a record of your improvement. I listen to audio books as my concentration has waned dramatically and I recall past chapters before moving on to the next. Not easy but we will get there eventually xxx

  • It's tough Lainey66 isnt it, but the odd time I've mentioned it to a friend they say 'oh every time I go into a room I've forgotten what I've gone in for!'

    If it was only that I'd be happy!

    But as you say we'll get there! Hope your mouth is ok after the dentist taking your tooth out!

    Speak Soon

    Angela 😘

  • I find that if I mention it to people I get comments such as "Ah sure it's an age thing it happens to me too!" I have become a tad ratty at times and once said "really, so you look at your laptop and wonder who opened it, placed it in your hands and why, Forgetting totally that your were about to book import ferry tickets for your sons ?" Yes it really can get you down. J have taken to carrying a note book and using reminders on my phone like never before 😂😂 my mouth has been in a bit of a state today, I had quite a lot of pain once the anaesthetic had worn off. Unlike any pain I have had from a tooth extraction in the past, I actually slept for most of the afternoon in the hope it would ease. Thankfully it has 😮😮 I hope all is well with you.

    Elaine xxx

  • Ohh I can so relate to this! I literally never recall what it was I was doing or going to do. I hear that too that it comes with age but heck I'm only 35! Anyways hope you are feeling better.

  • Hello MrsNails and thank you for your very detailed response! I truly appreciate it! I sent my oncologist at UCSF an email so I will wait to hear what she recommends. I just feel so out of it sometimes it makes me feel like I'm useless at work. I know I need to just enjoy life an appreciate what I have and that I'm still here on this earth. I'm overwhelmed and oh so very grateful for EVERYONES responses on here.

    With love

    Stephanie

  • Hi Stephanie

    Great idea to email your Oncologist, you can explain in more detail how you really are. Don't feel useless as you are not & you've achieved a great deal by continuing to work.

    I have a autoimmune disease, that's why I eventually retired early but I worked through it's most active phase, my husband used to help dress me as my arms were affected, drive me to the office & set my work up for the day, l realise now I was a fool to myself but I did eventually see the light & Retire!

    I see your Oncologist is at UCSF so is that San Francisco, the Beautiful City by the Bay? ❤️

    I hope you get a helpful response from your Oncologist, please let us know.

    Angela 😘

  • MrsNails

    Well my oncologist has yet to respond BUT I was just reading an article online about people with auto-immune disease can benefit from drinking bone broth. Says auto-immune disorders experienced a relief of symptoms when drinking bone broth, with some achieving a complete remission! Would be worth to Google! I actually just purchased the powder version from iherb.com. I read that article was in self magazine.

    Yes, she is located in San fransciso. I love about 3 hours away in the Central Valley but it is well worth the drive 🤗

  • Your writing shows that you still have a good working brain! It might not be quite as sharp but as you say, it's improving all the time. To say 'well done' seems trite but I can't think of a better thing to say, as you have worried really hard at it. I hope mine returns. As well, I hope my eyesight improves and the blurred vision goes away with time. Only those who have gone through chemotherapy can understand the many, many side effects that get worse with each dose, then linger on and on. Anyone who works through it is amazing.

    Like you, I have been "Mrs Galmour" ensuring family and friends don't see what's really happening ( until the occasional collapse happens). We've even had visitors who thought I could entertain in my usual way. Now though, we've declared the house 'closed' until further notice.

    Keep up the great attitude Angela ( and all of you BC girls).

    😘😘😘🌺

  • Hi Jacbowden

    Aw, Thankyou Jac, I'm very greatful for predictive text though, however l always reread it as you never know what it will choose! 😂

    We did the closed house thing too, it was my 60th so we put our Sons n Wives up in The Premier Inn rather than have them stay at home, it sounds awful now but l had no hair, just had a Mastectomy & l didn't want them to see me like that!

    Chemo played havoc with my vision too, Terry bought 'me' a new larger TV to help but l really wasn't bothered, loving it now though.

    The glamour thing kept me going, then it was a challenge to maintain it, the Nurses on the Unit loved to see what I would be wearing & l always wore high heeled shoes 👠 I had a private blog on my Facebook that l called "I going to beat this wearing lipstick" 💄

    There was a lovely Sister on the Unit who explained Chemo will go to your weakest point; the Taxol nearly destroyed me & has damaged my knees which l had surgery on 40 years ago.

    When l told my friend why I was struggling downstairs in an hotel she said "it was a small price to pay" l truly don't know if I can ever forgive her, l wasn't complaining l was merely stating fact but there you go but l was devastated.

    I know someone on our group said in the last few days other people think it's over when you've had your last Chemo, if only!

    So, onward & upward, lipstick at the ready 💄We Can & We Will Do This 💐

    Love Angela 💕

    PS re your vision, did you wear glasses before Chemo?

    I'm short sighted & wear glasses, although I could read ok without glasses, it was my middle vision that was blurred & that has improved, so something to 'look' forward to 👩🏻‍🏫

  • Thanks for your descriptive reply. I did wear reading glasses, but as you say it's my 'tv' vision that's blurry. As well, I have a mucous membrane glugging up my eyes, especially worse when I wake. I keep blinking, but it stays to a lesser degree for all day.

    I too, used to dress up for my chemo sessions. Somehow it made it easier to cope with if I didn't look like a 'victim', I was and am determined not to attract sympathy.

    Your friend was entirely without empathy when she made that comment. Only we are allowed to chastise ourselves for showing a bit of self pity and we don't do it that often, because we're all about keeping on and looking ahead. I can understand you being hurt. We all pay a huge price for an uncertain future.

    Keep up the great attitude. 🌺

  • Jac has the doctor given you any drops or cream for your eyes? Mine gave me comfort drops & artificial tears, l preferred the Comfort Drops 😘

    Definetly with you there on not looking like a Chemo Patient 💁🏻

  • I haven't asked the doctor about drops for my eyes to be honest, but it's a good idea. Thanks. 🌺

  • Hi.

    Have you had your eyes thoroughly checked out.??? I lost quite alot of vision in my left eye on no: 5 of my Fec-t chemotherapy on just looking my optitians didnt find anything but then did a scan of my eye and saw fluid behind the eye

    I was sent to the eye hospital and they found the steriods that were given with the chemotherapy had caused a tear and so i was unable to have my last chemotherapy. It was gradually getting better but really am struggling with my reading at the moment. I have to go back in april to check that no scar tissue has built up.

    Just thought it was worth a mention. Xx

  • No I haven't had an eye check, but was thinking about doing so ( you know the feeling...sigh...another appointment with another medic). But now I will. Thanks for the advice. I hope you continue improving. 🌺

  • Yes i know that feeling. So many appointments. 😞

    However hated not being able to see properly. They are much better but not 100% although my eyesight isn't fantastic anyway but with contact lenses has not been a problem and you could say im getting older but im sure chemotherapy has alot to do with it. But hey im here so its a small price to pay.

    Good luck.🖒

  • Yes, a small price....! I will get checked, I need new reading specs anyway. 🌺

  • I have really noticed that my memory has gone down hill big time!! My girls are convinced I have Alzheimers as it can be so bad! I don't by the way but it can feel like that at times. x

  • I was just thinking that this would put me in early Alzheimer's, if that's even possible 😳

  • Hi Stephanie, i like you continued to work throughout my treatment, only taking off 5 weeks at xmas when i got my surgery. I felt this helped me as i was on my own and having a sense of normality kept me going.

    I get how you feel, people at work that when the chemo finished i would be back to normal, not realising that i still had surgery, r/t and then injections for another 8 months. I too had chemo brain - forgetting the simplest of things. I still suffer side effects having fi ishing treatment 15 months ago.

    You need to remember that your body went through a major trauma with everything you have gone through. Hooefully as each day begins you will feel that little bit better. The emotional and physical scars will never leave but that makes you the wonderful person you are today. Keep smilingx

  • Hi Maz1965

    I really admire you gals who worked through your treatment, I'd already taken early retirement so it wasn't an issue for me.

    Best Wishes 💐

    Mrs N 💅🏼

  • Thank you Maz1965.

    I definitely felt that working kept me feeling " normal" and not like a cancer patient too. Sometime I just get so frusturated, and you're right I need to realize what I went through. Thank you for your kind works. 😘

  • Ahh ladies ladies. You're stories have moved me to tears. Thank you for sharing, for your honesty and for the heads up and the tips!! Utterly invaluable ❤️❤️🌹💐🍫😘😘

  • You are all amazing - and you all keep me going love and hugs to you all 😘❤️️🤗

  • We're all here Louisejr anytime you need us, we can offer advice & usually somewhere along the line provide a bit of a laugh 😂 as we all need a little humour to help us on our way.

    Best Wishes & Hugs 🤗

    Angela 😘

  • Thanks Angela - and yes we all need a few belly laughs too 😘Xx

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