Chemo Brain Fog: Hello Ladies, I think I’ve... - My Ovacome

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Chemo Brain Fog

Saintgermain profile image
23 Replies

Hello Ladies,

I think I’ve started to have episodes of Chemo Brain front line ended 8 months ago started with little things left a burner on, mis-placed keys but recently I was suppose to pick up a friend for outpatient surgery keep in mind I’m a punctual person always on time never would not honor a commitment I made , I set my alarm clock left at what I believed to be the right time even the clock in the car didn’t register with my brain when I arrived my Friend was in tears I unknowingly let her down I was an hour late and they cancelled her surgery I truly felt I was on time this really scared me I apologized we’ve been Friends for 40 years she won’t return my calls I feel so bad

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Saintgermain
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23 Replies
Millie2023 profile image
Millie2023

Hello

I can’t help with the brain fog issue, but it might be worth a chat with your specialist nurse?

But (I hope I’m not speaking out of turn), I’m wondering if there could be a degree of overwhelm in there? It sounds like you’ve been through an awful lot over the past year or so and it does take a good while to process it all, especially when “keeping on keeping on”

Getting your friend to such an important appointment sounds like a huge responsibility for anyone, moreso for someone who’s faced what you have. I can understand your friend’s sadness and I hope she reflects and your friendship is able to continue.

Sending love, please be kind to yourself, you are only (wonderfully) human and we all make mistakes ❤️

Saintgermain profile image
Saintgermain in reply to Millie2023

Thanks Millie,

I spoke to my Onc's Nurse she told me to keep a diary. Thank you for bringing the overwhelming issue up I think you are spot on the last couple years have been quite a wild ride as we can all relate its been one thing after another then throw Covid into the mix. I think I've actually been spreading myself too thin. Thank you so much we're all human I haven't heard back from her but have apologized that's all I can do. Hugs

delia2 profile image
delia2

I echo what Millie said. Be kind to yourself! But maybe talk to your gp or cancer team about it. Xx

SarahBa profile image
SarahBa

Hi Saintgermain

I'm sorry to read what you are going through and I can see you are concerned about this change in your behaviour (i.e. your memory) due to your chemo. I hope these practical tips help but of course the fallout with your friend will be about you showing how sorry you are and also hoping that she can understand what you have been going through too.

I truly feel sorry for the situation you are in. Sometimes friends do not always realise what we have been through as they will say 'you look so well' and not realise how our treatment has affected us.

In my reply it feels like there are two key points.

Firstly you letting down your friend. I can understand why your friend is upset. If I were you I would send her a nice card with a letter enclosed (not an e-mail nor a text) and let her know how very sorry you are for letting her down and how your memory hasn't been the same since being on chemo and that you value her friendship and truly do apologise. I would also send with this a lovely bunch of flowers.

Going forward you will need to demonstrate that you are reliable to her. The onus is now on you however do consider if what people are asking of you is too much and be honest with them if you feel they are requesting something which is too much for you. Keep a diary and have a calendar up so you don't forget anything important and a few days before these appointments text your friends to confirm the details are how you thought they were. Get into the habit of checking your diary and calendar every morning.

Secondly, regarding you forgetting where things are. This may seem over the top but you need to have a place where you always keep certain things, such as house and car keys. You should always put them back in the place where you keep them.

Double check things such as turning the hob, the cooker, lights, etc off.

If I were you I would buy a notebook (to remind you of things) and a pack of say 10 post it notes and keep pens and post it notes in each room of your house. If you remember something you need to do etc write it down on the post it note. This may seem over the top but it will help you to get back on track and then in time you can reduce this over reliance on having to write things down but for the time being I think this would be sensible.

I do hope you make it up with your friend and I think there needs to be a little bit of give and take from both of you. I'm sure you wish your friend would understand what you are going through however if you truly value her friendship you need to show her how sorry you are and what you are doing to ensure this never happens again. You can of course refer to your memory/chemo brain but she will be concerned this will just happen again hence why you should mention having a diary and a calendar. Then, in time, as hopefully you rebuild your friendship would be the time to let her know how the treatment has impacted on you.

I hope everything works out for you xx

Saintgermain profile image
Saintgermain in reply to SarahBa

Thanks SarahBa,

Always nice chatting. I do agree I apologized and will send a card thanks a bunch for your tips my Husband is also being my second set of eyes. I bought the post it notes hoping this subsides in the near future but until I turn that corner I'm going to double check the burners, keys ect. I left a voicemail apologizing and explaining what I'm experiencing that's all I can do I really hope it works out if not I have to forgive myself.

testarossa71 profile image
testarossa71

Oh my goodness, Saintgermain, I really feel for you.

I've experienced massive brain fog since I was diagnosed. I think it's been a combination of forced menopause (from TAH surgery), depression (diagnosis), PTSD (again from diagnosis and surgery), and chemo. Suffice to say that I have gone from having a very demanding and quite high-flying job, to often not being certain about which day/month it is. To be brutally honest, it feels like someone robbed me of 20 IQ points.

The first thing is to send an emphatic and genuine apology to your friend. Something handwritten - apologising for your mistake, acknowledging the impacts this has had on her (cancelled surgery, worry, delayed rescheduling for surgery, additional cost? etc), and confirming that you won't let her down again*. You can frame it it in the context of genuinely not realising how bad your brain fog has become, and that this has been a sobering learning experience for you. You can ask for her forgiveness, and I suspect that will come, but allow her the time she needs to process what's happened, without rushing her. You can also suggest that you meet when she is ready (probably in a neutral venue) so you can listen and fully understand how she feels impacted by this. Listening - really listening - without interrupting, or trying to explain yourself, is the key to this bit.

I want you to understand that while your first instinct was to want to support your friend's needs (by offering a lift to her place of treatment), you weren't really supporting your own needs. We know we have brain fog. That makes remembering things hard for us, and while there are a wealth of measures we can take to help prompt our memories (as others have suggested here), the kindest thing you can do for yourself is not to overcommit. This means being supportive of friends or family by listening to their woes or worries, without trying to actually fix them. Giving suggestions for how people can sort small issues, without placing yourself as the solution. In this case, when your friend said she didn't have transport to the hospital/asked you to give her a lift, you could have framed it: 'As you know, since I started chemo, my memory doesn't work quite like it did. I would hate to forget, or be late for something so important, so how about you organise a taxi/ask another friend for this? And, once you're recovered, we can arrange to meet for lunch/brunch/coffee and cake, as my treat to you?' That way you are being supportive for her, but not committing yourself to something time/mission critical.

*Be kind to yourself -first- and don't commit to anything time- or mission-critical. No-one minds if you're a bit late popping round for lunch, or forget to call if you said you might. But avoid agreeing to impact-heavy commitments. Does that make sense?

I feel sure that your friend will forgive you, if you give her time. You've been friends for many years and I'm sure she's been worried for you since you became ill. Good friends don't bail after one mistake.

Wishing you the best, and please do update us if you feel able.

testarossa71

Saintgermain profile image
Saintgermain in reply to testarossa71

Your a kindred spirit,

I can so relate to your journey haven't had the depression but I'm on anti-depressants its almost like I lost time the clock in the car didn't even register. I don't think all Survivors experience it but I do agree hormones along with the trauma plays havoc like you said I am guilty of overcommitting I have set some boundaries not taking on some Friends woes compassionate distance this was my first major experience with chemo brain but some other minor things now make sense accidently throwing out a new box of contacts to the tune of $100, leaving a burner on burning my Husbands grilled cheese sandwich too many pots of other things cooking at the same time I went blank. I so appreciate your suggested response to Friends I will adopt that in the future time and mission critical is key. Makes perfect sense thanks for reminding me that good Friends don't bail after one mistake it was a big one on my part but I have a solid track record with her time will tell. Cant thank you enough!

testarossa71 profile image
testarossa71 in reply to Saintgermain

I can so relate to those little bits of forgetfulness about daily chores - I do that often.

There are things I do that help me with general routines:- A note on the back of the front door reminds me to make sure I take my blue badge (disabled parking), keys, wallet, face masks, and other essentials.

- I set alarms on the phone for medications.

-Hospital/doctor appointments are transferred to my phone as soon as the letters arrive. -Any appointment I have that requires me to leave the house - I set a reminder for the day before, and another for the day of the appt, -and- add the travel time in, so I leave on time (rather than being reminded that I need to be an hour's drive away, 15 mins before the appointment starts!).

- Instead of contacting the pharmacy as I get close to running out of my medications, I have an arrangement with my GP (family doctor) that I call them on the first of every month to order what I need for the month in one go. That's another phone reminder.

- I have a chalkboard in the kitchen - the second I use the last of something, before I even continue with what I was cooking/doing, I write that item down so it's on the list ready for the next time we're shopping. My OH knows to check the board, or can call and ask me to send him photo of the board if he is out and has time to pick up groceries.

- Where you can automate things, do so. That might include grocery orders, repeat subscriptions for pet supplies or your own prescriptions. Amazon is good for this.

- I use digital/phone reminders to touch base with specific friends too - today's reminder told me to "text Ange and ask her over for coffee this week". Because last time we spoke she said she wouldn't be free for 3 weeks and I knew I would forget if I didn't put that in the diary.

- I also sync the laptop with the phone so that if the phone is low on juice or the laptop is in another room, I'll still get the reminder from the device I'm using at the time.

I'm not in work at the moment so don't have to worry about forgetting crucial things there - though I miss being that person!

Other people have suggested lots of great methods for managing brain fog - some will suit you, some won't. Whatever you choose, allow yourself some slack while you get used to it.

I loved your phrase 'compassionate distance' - thank you for sharing that. I didn't have a name for it. Setting boundaries is really healthy and I'm glad to hear that you've felt comfortable doing that. True friends understand. xx

Saintgermain profile image
Saintgermain

It was almost like zoning out which is quite the experience haven't had it again not to say it wont rear its head again. I've been married 20 years I think my Husband was more shocked than me didn't even thing "Chemo Brain" was a thing but knows how reliable I typically am made sense to him the chemicals circulate your entire body. Thank you for your invaluable tips you've really perfected this journey and adopt them. Yes I like that analogy it fits it! Thanks a bunch I'll keep on reminding myself "True Friends Understand" Hugs from Chicago

Rankij11 profile image
Rankij11

Hi , Feel like I’ve had brain fog since chemo , not sure Olaparib helps either . I do things I would never have done/forgotten before . Could be just ageing , but don’t think any drugs in your system help . I use diaries/check lists now when I never needed to before . Anyway you know I think your friend needs to be more aware of your personal battles . You made a mistake , whilst you were trying to be a good friend and help her . You’ve apologised. Any really good friend would accept that and move on . I think you should stop beating yourself up and let her come to her selfish senses. On the plus side brain fog has good days and bad……

Be well and happy

Jennifer

Saintgermain profile image
Saintgermain in reply to Rankij11

So glad its just not me I think the decline in hormones may make it worse. Its a very strange thing. My Friend did call me and we sorted it out. No one knows this journey like other Teal Sisters!

Trickysite profile image
Trickysite

Having read everybody’s hugely sensible comments and their notes on how they manage to remember the things that keep the wheels of life oiled, the majority of which I have been doing for years, I now know I am normal! Emma

Saintgermain profile image
Saintgermain in reply to Trickysite

So funny Emma post it notes are a gift from God!

SUE7777 profile image
SUE7777

Just to add to the above comments, I've had chemo brain and know what it's like but you could also be suffering from the situation you find yourself in with this horrible disease which can be overwhelming and affect your brain. I do yoga as often as I can and find the meditation side helps to keep the brain clear. Hope this helps and good luck with your friend. Sue xx

Saintgermain profile image
Saintgermain in reply to SUE7777

Your right Sue its very overwhelming to push forward with it always in your shadow every ache and pain could drive you batty!

thejoannabell profile image
thejoannabell

Chemo Brain is definitely real. I have ADD, so I have always had to have lists and labels and put everything on the calendar, but I find now that I am forgetting words and names of people that I know pretty well. I’ve gotten a few more good tips for managing from reading this thread. I am so sorry for what happened with your friend. What you have been through is hard enough without having a friend be angry with you about it. Especially since you have always been reliable before. I suppose this illness separates the wheat from the chaff in many different ways. I hope that situation works out in a way that brings you some peace. ♥️

Saintgermain profile image
Saintgermain in reply to thejoannabell

Hi Joannabell,

She called me last night the last thing one needs is any added stress. I totally get the forgetting names love your "Wheat from the Chaff" Thanks a bunch

Ruebacelle profile image
Ruebacelle

Am so sorry. Docs dont give brain fog enough attention. I have had it for 6 years love from paris

Saintgermain profile image
Saintgermain

I agree no they don't I went to a large cancer center in the states I was pretty much on my own after the last treatment I'm sure not all centers drop the ball when preparing the Survivor you really need it. 6 years that must of been awful but I've read it doesn't always disappear after the first year that must of been a nightmare for you. Hugs from Chicago

Jacquiemoo profile image
Jacquiemoo

I'm so sorry you are going through this and can relate. Sounds pretty extreme in your case and you should inform your doctor. If this friend was truly your friend she should understand. I'm sorry she has upset you at this time and all you are going through. Please reach out to your true friends for much needed support..take care, be strong, you got this!

Saintgermain profile image
Saintgermain in reply to Jacquiemoo

Hi Jacquiemoo,

It was kind of strange how it comes on you I appreciate your reply I am now at 22 months NED or I thought my CA125 has increased went for a PET Scan today follow up with the Onc tomorrow praying for the best. It's been a journey but am getting past the hurt, treasure old Friends and have met some great new ones along this journey. How are you doing?

Jacquiemoo profile image
Jacquiemoo in reply to Saintgermain

I will pray for you that all will be good. I’m doing so good, in remission. Going for my 3 month blood work tomorrow and will see my doctor next Thursday to discuss. I feel confident that all will be good for you and me!

Saintgermain profile image
Saintgermain

Thank you for the prayers I turn everything over to God. I am so happy your in remission. I let you know how things go with my Onc tomorrow. I did have a CT scan 5 weeks ago normal.

Hugs from Chicago

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