Chemo brain -overwhelmed by my life

MicheleR

Hi all,

Has anyone got any good tips for managing chemo /menopause brain?  I seem to be suffering great boughts of forgetfulness  disorganisation and logistical struggles and its causing me stress trying to fix up all the whoopsies and manage my life. I have teenagers and all the appts and organising on top of work and my own needs to keep my health on straight is no easy task. 

Do you think it improves?
What are your experiences so i dont feel like a complete nong. 

M

Lythe

Hi @Michelle_R I’m not sure if this is super helpful, but I find making sure I put absolutely everything in to my phone calendar including things like “take Panadol” or “call x about cancelling appt” or whatever. Absolutely everything goes in with reminders to pop up on my phone. I also take notes in to the “notes” app on my phone at appts so I remember what they say. Basically I just document everything even if I think “I’ll definitely remember that!”  Because I have learnt there is a good chance I won’t. It’s tough because I have always prided myself on my good memory so it’s tough when that is gone. It just adds to the laundry list of things that just aren’t the same anymore. Good luck!x

MicheleR

Hi @Lythe,

I use a diary mostly effectively. I think when things get busy or stressful all my strategies fall away. If i listed everything i need to remember i might be doing it till next year at this rate. I could start a separate list on my phone to add when i get time. 

Ive found with regular things like pills im generally ok because i build it into a routine do its habit. Its sll the random demands, kids appts, my appts, maintenance activities. I work 50 % and find i can focus well but i block everything else out so some days after ive fone appts im really pooped and might not have looked st my todo. Maybe i need a reminder to look at my to do! Life feels busier than ever just doing different stuff. 

Zoffiel

It does get better, but it takes a long time.
Try to keep things really simple (not easy with teen input) and cut out, or delegate, anything that can reasonably be abandoned. You'd be surprised how much stuff we do that we don't really have to. My councilor was always on at me about the 'should' thing. I've learned to consider the difference between 'must' 'should' and 'could'.
Don't feel like you are failing if you can't keep up with your old self.
I've been brutally honest with my boss when it comes to my capacity. I've found that after 7 hours at my desk I'm shagged, so I've negotiated a shorter day. No point me being there for the extra hour if I'm not productive.
Hang in there. There's not much you can do about this, just keep plodding through it. 
Mxx

MicheleR

How long are we talking @Zoffiel?

Chemo finished jan last year. Im on hormone blockers and i do wonder if its a double whammy with menopause.

I dont know what i can get rid of. Teenagers not really useful entities yet. If i give up my health things thats no good. I could give up work but then no money. I think my housework skills were already in basic category. Ive been trying to do clear outs hoping it will help my organisation of finding stuff..

Cath62

Hi @Michelle_R, I think the hormone blockers cause a bit of forgetting too. So yes in my view it's a double wammy. I finished chemo in sept 2020 and started tamoxifen in November 2020 after radium. I think things have improved but I do write everything in my phone calender all the time, even small details or prompts. I have a morning routine so that helps too. I think with practice of writing things down, a few crosswords or mind games it helps and improves. You have family too so that's alot at the best if times. Maybe your family can take on some of the remembering of their own things to help. Eg when my son was 15 he worked part time at hungry jacks. His uniform was dirty one day because he didn't put it in the wash in time for his shift. So I said to him, I have to remember everything for everyone so how about you remember when your shifts are and wash your clothes in time for them instead of me trying to remember your shifts and washing your uniform in time. Bingo...life changed. He took responsibility for his own washing from that time forward. Just one example of family members remembering things for themselves. Best wishes 

AllyJay

My brain turned to oatmeal porridge during and after chemo...also still on letrozole, which I don't think helps.In the beginning it was words...what the hell were they, and where were they hiding? Everything became the thingy...the clicky thingy (remote control) the cutty thingy (scissors) the picky uppy thingy (salad tongs) and so on. Numbers were a nightmare...all the wrong way around and forgot my PIN number in the bank which resulted in me bursting into tears. It has improved, but I still have great difficulty remembering things. I'm a total Luddite and use old school methods. I found that having a visual reminder of upcoming tests and appointments for the month to be useful. No help to only know the day before for many things, so my husband printed up a monthly calendar sheet for the year. As I get an appointment, it gets filled in on the day block for that month. For some, I have a request form for say, bloods or urine to be done a week before the appointment. This is filled into the appropriate date block...as well as if it is a fasting blood test, or first urine of the day. My husband has learned to call out phone numbers two at a time, or else I flip the numbers around as in 948 becomes 984 and so on. My appointments are many as I have a number of health issues and see a rheumatologist, cardiologist, pulmonologist (lungs), nephrologist (kidneys) haematologist (blood), oncologist, neurosurgeon, breast surgeon, G.P. ....and a partridge in a pear tree.... so as you can imagine...keeping ahead of it all is difficult. Is there any way you can get your teenagers to help more? When my kids were that age, they had set jobs that were theirs. No job...no pocket money. From the age when they started school, they had jobs. Little jobs like feeding the cat, bringing in the post and the like. They soon learned to carry their weight and that was loooong before the cancer shitfest. I hope you find techniques that work for you and your family.

MicheleR

@AllyJay,

Relateable. I turn up at appts wrong time and day regardless of if i wrote down right or not. I usually get oncology and surgeon ones right but everything else is fair game. Plus those specialists always run late. 

Have just told school to also email my husband as i miss stuff and forget. Some of the things important. 

One of my kids has adhd. The other not diagnosed but naybe. Ive been living in their chaos for many years. We are all lost here! 

I say things to my husband like "that thing that starts with m and is brown". Clear as mud. 

I feel incompetent. 

Zoffiel

@MicheleR
How long is a piece of string? I was just getting back up to full speed (took 10 years) when I had my second diagnosis in 2016. Now, nearly 5 years since I finished my last treatment, I still feel foggy. Its reassuring that my colleagues seem to think that I'm competent, but bloody hell I'm slow. Checking and double checking everything because mistakes are not a great idea in my workplace.

The AIs don't help (unless you consider their stirling job of keeping cancer at bay) I took a three month break last year and things definitely improved. I could walk and talk at the same time. Unfortunately, my general inclination to stay above ground meant that I had to go back on them. Oh, well, only another 5 years to go. Provided nothing changes in the meantime.

Please don't feel incompetent. Maybe consider that the majority of incompetent people have absolutely no idea how ineffectual they are and would tell you, with confidence, that they are great at everything. If you are worried about your performance--personally or professionally, there's every chance you are doing a better job than half the people around you.

Julez1958

Hi there
I am 63 and semi retired with my own business - although I have a laptop, IPad and iPhone I still use a paper diary on my kitchen bench.
I write down business appointments and personal appointments in different colours and I also do a daily “ to do”list.
With my drugs , I bought a Webster pack ( just like the one I got for my 88 year old mum ☹️) as I now have different drugs to take each day in the morning and the evening .
Although I didn’t have chemo ( had double mastectomy and radiotherapy and now on Letrazole)  I found the whole cancer shitfest messed with my mind and I’m just not as focussed as I used to be.

Sister

I'm 3.5 years from chemo and on AIs.  I had to come up with a lot of different strategies for coping with the cognitive loss including writing things down and doing things "mindfully".  The struggle is definitely real.  One of the big things though was making sure that other people realised that they could no longer rely on me to remember things for them.  I wonder how much of that, as a mother of teens, you do.  On one hand my memory has become a bit of a family joke, but on the other hand, we all realise it is quite real.  Harder to convince colleagues that when I say that I don't remember, I really don't remember.  And some things don't stick no matter how hard I try - I just draw a blank.  The psychologist I saw when I first went back to work did suggest that I was finding it so hard to deal with because I probably functioned at a higher level than many prior to diagnosis because she thought my post-cancer level sounded pretty normal.  I don't know if that is the case but it's bloody hard to deal with some times.  

Afraser

@Michelle_R
Never underestimate how much working mothers manage to carry in their heads. You may simply have become ‘normal’ . A break due to treatment and/or its impact can upset the highly developed skill of juggling tasks, unspoken needs and completely off the wall stuff. Others may have to lift their game a little. Teenagers may not do things the way you would but they can do some things. It’s good for them! As @Zoffiel suggests, a short break from AIs may clarify if they add to the problem. Like her, you may still resume the therapy but at least you know what to
blame! Best wishes with it all. 

MicheleR

Hi @Sister,

We are in school hols right now. I wake them at noon! I dont actually remind them about schoolwork or anything but medication, appts yes because guess who gets to make appts. Im responsible for their health. 

Ive been "fortunate" to be unwell - virus of some kind (covid test says no) - and cancelled all this weeks appointments. I feel much better mentally as overwhelm is gone. I also had day off work. I think its just the stress of juggling all the balls and dropping them occassionally spectacularly. I "caught up" with some admin. Still have a whoopsie to fix. 

Maybe i need a mental health day occassionally and reduce rushing between all the appts. 

MicheleR

Ie only just gone back to work after annual leave!

Keeping_positive1

Can you take leave from work?  I seriously think so many women just try to juggle too many balls these days, we don't have to.  Give some others some responsibilities.  I hope I don't upset anybody by saying this, but truly we need to look after our health much better.  Don't try to be everything to everybody, I have tried that, it just doesn't work.  

Cath62

Totally agree @Keeping_positive1 with your comment about about being everything to everyone- it doesn't work! I tried it 🙂 and it failed for me. I now put myself first every day. You can't give from an empty cup as they say