new member had written on the activity board.

SoldierCrab

LindainOz12

Hi everybody. Just joined today. 2017 was my year of lumpectomy, chemo, radiation and started Tamoxifen. Mostly going OK but finally my memory problems have so got me down that today I rang the BCNA Helpline and (among other things) Rosie suggested I join. Looks like a friendly place. :-)

August 28

SoldierCrab

hi LindainOz12
nice to see you join sorry you have need to.... YES it is a friendly place where we share ups and downs and good and bad....  
When you post of the activity board  very few people see it .... So I have posted your comments here so that others can say hi to you also... 

Below are a couple of links to help you find your
way around the forum and also how to find a breast care nurse and how to order
a MY journey Kit if you haven't got one yet. 

It can be a whirlwind when we first get a
diagnosed.... Breathe and take it one step at a time. 

Navigating the online community
formerly the what and how thread.

http://onlinenetwork.bcna.org.au/discussion/14879/navigating-the-online-community-formerly-the-what-and-how-thread

Breast Care Nurses

https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx 

My Journey Kits and other
resources. 

https://www.bcna.org.au/resources/

BCNA Helpline 1800 500 258

If you have any questions, concerns or require any further
information or support please call 1800 500 258. BCNA’s helpline will now be open from
9am-6pm Monday to Thursday and 9am to 5pm Fridays.  

Soldiercrab

Kiwi Angel

@LindainOz12 welcome, sorry u have to be here but we are a friendly bunch and it’s a great resource for any questions u might have xoxo

Sister

Welcome @LindainOz12 The memory thing sucks, doesn't it? Sometimes it feels like early dementia. Anyway, you'll get lots of support, info and the odd laugh here.

LindainOz12

Thanks for the welcome. After talking to my GP we decided it was very clear I had Working Memory problems and nothing to be gained from seeing a neuro-psychologist.  aAm considering whether to talk to a counselor.  Having my GP acknowledge it does seem important.

kmakm

I think that is important @LindainOz12, most important. I'll tag you in an article you might like to read. K xox

primek

Hows your sleep @LindainOz12. A big part of a great memory is adequate sleep and stress reduction. So yes...a counsellor may help teach techniques in relaxation and that  can help sleep . 

This article is interesting and explains quite well why it can happen. I think we can all identify that the year of treatment is hugely stressful.

https://www.tuck.com/memory-and-sleep/

When I first returned to work I had a lot of difficulty remembering things. My memory previously was remarkable. Whilst it mostly has returned when tired I have difficulties recalling names of things or forgetting what I'm doing. 

I keep a week to a page diary (1/2 A4 Size) I write my to do lists and check and mark off several times a day.  I also carry a similar size notebook where I write more detailed stuff if I need. I don't always need to refer back...the act of writing it helps it stick in my head...but rechecking it is very helpful.  
I use electronic diarys for important reminders and alarms also. Over time I needed it less and less.
Tiredness is huge for me and stress. If I keep that in check it's pretty good now. Not quite as sharp but almost.. 

Best of luck and hope you find an answer. Kath x

LindainOz12

Hi, thanks Primek for the sleep article.  I like to get me teeth into the whys and wherefores of what is happening to me.  I agree sleep is a big consideration.  While my sleep is not perfect at present, I am not awake for hours as I have been in the past.   What I'm talking about is the ability to hold  stuff in my short-term memory while I go to a different Word document in my computer and come to type it out - Its gone! or being unable to hold 3 different components of a plan in my mind while I work out what to do for the best, or going  into Coles to buy 5 things and as soon as I walk through the door I can only remember 1. 

Finding out that researchers have named this as a Working Memory deficit will hopefully give me the strength to reply calmly to people who say 'but its probably just ageing anyway'.  I'm 64 and acknowledge I'm ageing but this is something specific and different.  Here's an Abstract of an article from the American National Centre for Biotechnology Information:

https://www.ncbi.nlm.nih.gov/pubmed/28177081

I realise I have to stay on Tamoxifen for 5 years but the prospect of putting up with this for years is definitely depressing!

Linda

PS Thank you SoldierCrab for re-posting my initial post to the Online Network.

Afraser

I love the way everything gets dumped onto ageing - short term memory loss is not normal at 64! I got the same thing about vaginal atrophy. Perfectly normal to 68, not functioning at all six months later which correlates precisely with the time on femara? Ah must be ageing says the specialist. My oncologist thank heavens doesn't have much truck with this - my reducing bone density is definitely femara! Keep at it to know what's causing your problem. Finally you may have to make a really difficult choice about cancer medication or brain capacity, just as I will about staving off cancer or copping fractures, but at least I can study the odds with some certainty!! Best wishes

kezmusc

Welcome @LindainOz12.

Already some awesome advice from the ladies..  I have been playing handball with Tamoxifen for over a year now.  On the HT bad memory, cant' recall words, sentences come out backwards etc.  I go off it and it goes away within a couple of weeks. 

There was an article recently published regarding this with a lot of discussion going on about it at the time.  Here is the link

https://onlinenetwork.bcna.org.au/discussion/19339/article-memory-loss-following-breast-cancer-treatment/p1


All the best and welcome again.

xoxoxo

primek

@LindainOz12 ...is there a reason for tamoxifen and not an aramatose inhibitor. The simple change might make a difference. 

PS...I have the very same issue in supermarkets. Its bloody annoying. Sometimes I know I need to go into one but can't recall why. I'm 53.  

LindainOz12

Thanks for the support and the memory article.
I think my oncologist went with Tamixifen as I have arthritis in a number of joints and some bone density problems.  

Brenda5

I am 56 now and went on the Tamoxifen an extra year to make a total of 2.5 years due to my concerns with bone density. I am to change to Femara in November and we'll see how I go. I can always go back to Tamoxifen if it doesn't do well with me. Not that either are nice to take. I live for the time I will be free of all homone therapy.