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I'm the first to admit that I have a terrible time remembering things. I forget names, lunch dates and birthdays all the time. I use every possible tool to keep my brain as organized as possible by updating my calendar, using reminders and keeping lists.
Let's talk about some ideas to keep your brain in shape. Many cancer survivors are living with side effects from treatment, which can cause memory loss and changes in cognition (sometimes called brain fog or chemo brain).
One of the best ways to organize your thoughts is by keeping an updated calendar and task list. There are so many tools to help with this from paper calendars or organizers to applications (apps) on your smartphone or tablet.
Pick one tool and use it for everything. Most tools allow you to update your schedule and keep a running task list, special notes and other information such as contacts.
Another great strategy is to organize your living space. Find ways to organize documents such as medical records, appointment information, mail and others. Create a separate location (or folder, desk drawer or basket) where these items are placed.
It's important to keep items in the same location each time so that you can easily find them later. This works great for your car keys, cell phone and purse or wallet as well.
Here are a few other ideas:
Please feel free to share your thoughts on this topic. What's worked well for you?
Sheryl M. Ness, R.N.
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How do you respond to people who tell you that 'chemo brain' is no longer an excuse? Avoiding interaction isn't a viable option and I do not use the affliction as a basis - it is assumed by the perpetrator.
Chemo and other cancer treatments can deplete our bodies of many nutrients, impact our digestive, endocrine and mitochondrial functions.
A great deal of improvement can happen after getting good lab work - a full thyroid panel, complete hormone testing, and intestinal function and nutrition testing and supplementing accordingly, along with being on a nutrient dense diet with healthy fats and lower carbohydrates.
Playing games and coping strategies isn't going to fix a chemically based problem - investigating and finding real answers can get us a lot further.
Hi, Mastectomy in 2010,chemo in 2011, back surgery in 2012. The foggy brain is only happening recently. ???.
Good advice on the activities.
Crossword - check
Knitting - check - picked it up again after a 30 yr absence. Thought it would help the numbness
(neuropathy??) in my hands.
New language -check. My daughter told me about Duolingo.com. Lots of languages to choose from and it is Free. Oh and it is fun.
Exercise - check at the senior center = free
And it is helping me (hopefully) get my "gaspedalfoot" working again.
I have totally ditched TV. But not the Computer.
Will have to investigate Vitamin B12.
I am still using a walker -- some places may not let you exercise with a walker. I am careful and lucky that the instructor is Ok with it. She has to protect herself and I understand that. She has told two people to leave -- and she was right to do so because they were not careful.Thanks for listening and do try Duolingo.MKSapyta
Is it difficult to get disability if you are diagnosed with chemo brain at the age of 57?
Sitting here just found out about Chemo Brain A Few days ago by my MD not my oncologist Breast Cancer Free 18 years Did my on research I actually thought I was going crazy most of my family and friends had noticed a change in me I go for my six month check up on May for usual test blood work Chest X Ray and Mammogram I will defiantly be talking to him about this I am retired form the medical field now eight years I am dumbfounded I have panic disorder chuck of the memory and many other symptoms of Chemo Brain due to my panic disorder why and how did I not pick up on this duh Chemo Brain unfair my onocologist did not inform me this could happen to all survivors or anyone going through this being a nurse I should have known but Surley just chucked it off to loosing my father whom was also my best friend 19 years ago will confess I had a nervous break down but later went back to work as usual this is hard to conceive Feeling Dumb
As I am reading the posts now; why don't doctors inform us???? That's not right. This is not for sympathy, just a vent, usually a very positive person, that is how I have concurred what I have just like you all have. But since I was diagnosed with leukemia at 16, the prednisone they gave me gave me the AVN (bone disease) that gave me the four hip and two knee replacements, and the chemo gave me my hard of hearing and all the cognitive impairments and the radiation to the brain gave me the Brain tumor! Really??? Don't we get a choice anymore on deciding in our medical decisions. They never tell you the whole story or what all the side effects are.
You are all truly AMAZING PEOPLE!!!!! Keep up fighting!!!!! You can do this!!!!!! It's hard, it sucks!!!!! But We can do this. We will not let it beat us!!!!!
I have had chemo brain for a long time due to leukemia when I was 16 years old and had chemo and radiation to the brain. I guess I have been managing a long time utilizing the skills you mentioned. I never knew of it until recently when I started doing research Because of some new symptoms. I had Gamma knife tx to treat a re-occurring A-typical Meningenoma brain tumor and began struggling with more intense cognitive issues and issues repeating words and difficulty finding the words I want to say when I am talking. My question: do you think the recent gamma knife tx which included a very high dose of radiation may have intensified what was already present? In the article, it states that ADHD med's may help, is there really hope. I have the skills and the knowledge.
Cmy last chemo tx was in late Oct. this short term memory loss and recall problems are making me crazy! I want to back to work as an RN but I am petrified that I will forget something or do the wrong thing. Not good for patient care! I'm at my wits end and don't know what to do!
After going though four months of chemo I had a very hard time remembering things and even had trouble speaking (sometimes still do), but I have decided to continue my education and take online classes. This is very difficult as everything is crammed into an eight week term so I spend a lot of time reading and typing answers to essay questions.This has seemed to help me so far. I still have trouble concentrating sometimes, but it is something I am committed to finishing. Now I have three classes left to receive my bachelors degree, but I will need to put it on hold for a bit as my cancer is back and I need another surgery.
Thanks for sharing all of your experiences. This is my thrid cancer and also my last. Nobody told me about chemo's side effects. Until I went back to work this last time and I am sitting in a meeting and suddenly I don't remember the names. I remember faces but not the names. Sometimes I am late for an appointment and I start running to get there and then I forget where I was going to. I live in Sweden and in a small town and most people know me but I don't remember them. Calenders, applications on my phone and post-its help and I read, work hard and take long walks with our dogs in nature. But I feel that I am a shadow of myself. I try to explain to people that I have chemo brain but I look too healthy (almost no one believes that after 18 times chemo (third time around) and5 weeks radiation (third time) my body doesn't respond like before, and that I still have my cancer living inside me, under control for the time being.
I have learned to keep my big smile, breathe slowly, try to calm down and if nothing works, tell people around me that I am so sorry, but can they write their names so we can continue with the meeting. I start with writing my name, with a friendly laughter.
It usually helps but when it doesn't help and people react not nicely, well, then it is their problem. My problem is to deal with my memory loss and try to survive and enjoy the time I have left. I wish you all luck but please remember that you are alive and that it is the most important thing.
Are there any studies to determine how long "chemo brain" lasts? Maybe it doesn't get any better or perhaps it doesn't last very long.
I forget stuff all the time. I might remember at 100 I need to take something at 400 and then not remember till that night or next day when its too late. This is so frustrating.
putting info in both your phone and tablet is great you can always see them and be aware of whatever is going on. Also passwords and other things can be jotted down as well
I have found routine helps greatly. I always put the dryer sheet in before the clothes, don't turn off the aquarium until I have turned down the heat at night, etc.
Sheryl. Mct oil and coconut oil can help. Anthony
And/ Or see if you are Vitamin B12 deficient.
It has been almost 4 years since my stem cell transplant and I am still dealing with brain fog. I am attending a class now that is based on the research work of Heather Palmer at Maximum Capacity and it is helping, although I am told it may take quite some time and to be patient. There is a recent study that was done by the University of British Columbia re: brain fog, I found it informative. I have also been particating in a Mindfulness Based Cancer Recovery class based on the work of Jon Kabbat-Zinn and this to has been helpful and encouraging. Be patient with yourself and seek out professionals who understand your concerns and will work with you and be supportive.
All the medical websites recommend that cancer survivors consult with their oncologist and/or general doctor, but this has turned into a 7-year nightmare for me.
Year after year, my oncologist has denied that Chemobrain exists. He says it hasn't been proven. He sighs and rolls his eyes every time I've asked for help, as if it's just a big joke to him and I'm wasting his time. He claims my symptoms are "just menopause," "just normal aging" or "just depression."
I kept asking for "some kind of cognitive rehab or therapy." He would say he knew nothing about that and would hurry out of the room.
When I confronted him more assertively and presented him with several published research papers documenting chemobrain, he angrily denied the quality of the research and, most recently, dismissed me with the comment: "I think you have psychological problems."
If I hadn't been so desperate, rattled and destroyed by his insulting attitude, I would have said, "No sh_t, Sherlock ... that's my whole point! YES, I'm having SERIOUS life-destroying psychological problems! Will you PLEASE at least TRY to listen and find help for me?"
(Instead, I was sobbing by then.)
Five years ago, even after my prior general doctor ordered a brain MRI for my severe vertigo spells, and found a substantial White Matter Lesion in a critically important brain area for Executive Cognitive Functions, my oncologist still shrugged it off, as if it had nothing to do with him.
Function tests by a Neuropsychologist found key deficits in my mental skills (even though I was taking stimulant medications by then), but SHE ALSO DISMISSED MY PROBLEMS, claiming my overall "superior intellect" would be able to compensate. (Not true ... the weak links undermine other intact brain functions, so the weakest functions put strict limits on much of the overall quality of my brain activity.)
After those tests, I had to change to a new general doctor, but for 5 years this new GP kept saying, "There's nothing wrong with your brain!" "It's just menopause. I hear these complaints from all my ladies." "It's just normal aging." (... plus MORE impatience, eye-rolling and exasperated sighing from someone too busy and important to be bothered.)
For years, I was nice, friendly, respectful and polite to all of these "professionals" - but they ALL let me down. My life has fallen apart completely and I now have serious financial problems.
I've had to spend a SOLID year and a half educating myself, gathering thousands of documents as evidence ... which has been horrible because of my serious organizational and attention problems. Now, I'm forced to become an aggressive, demanding b..ch just to get SOME minimal medical care. I'm a basket case from the stress and can't seem to follow through or get any results!
Now I'm terrified my cancer will come back and I'll have no oncologist that I can trust or afford in town here. No one is helping.
Don't tell survivors to "just reach out to friends and family." It's not that easy. They're sick of hearing about it, or they were driven away years ago by the sick behaviors that started after the cancer treatment ended. (I have no friends now.)
The medical profession needs to get its act together. Don't put so much of the "research and treatment" burden on dysfunctional injured patients!
I'll never trust doctors again. From now on, I'll always feel I have to research and double-check EVERYTHING they say.
Almost five years out to be declared "cured" from Large B Cell Lymphoma I am still struggling with memory challenges. Unemployed because my prior employer felt they needed to move beyond my treatment (and therefore leave me behind), it ended up being chaos but also the best thing that could have happened. I pushed myself into rehab services and informed my oncologist I needed help after several times getting stuck in conversation, unable to speak or form words. I had found myself in what should have been a known neighborhood, yet 3 times "lost" as if beamed to a new world. Sitting for a few minutes I was able to find my way each time but it was strange. I now am working in a fast paced position providing math calculations and analytical decisions. Do I still get "stuck" - yes. Ah well - it is me therefore I push me to keep going when others gave up. Get out there and enjoy the world seen from a new angle. It's glorious.
If there are any studies or information about effects of chemo on memory I would like to hear about them. Twenty three years out and I am still here so I can not complain. Still have memory problems, not nearly as bad as immediately after the chemo (sever), but my retention and memory are getting better.
Good tips! I bought a licence to ABC - Active Memory, which is an Australian games and puzzles brain training program similar to Lumosity. I found this particularly helped me with training my brain on ways to remember things (subjectively I felt it was easier to remember things). Consciously telling myself to pay attention has helped as well as understanding that 6 months after active treatment has finished I still can get tired and lose concentration - be forgiving of yourself!
I am an oncology nurse who was one of the few that never regained my full cognitive abilities after chemo. I am currently 18 years post first chemo; 10 years past second round including stem cell transplant. I have a few additional suggestions that help me:
--Never leave anything cooking on the stove top without taking a big cooking spoon out of the room with you to remind you it is on
--Use your phone or wearable timer to use when you are doing anything that needs timed (baking etc). You may not hear the timer if you are in another room.
--Make sure your significant others in your life know about this hopefully temporary problem. You truly may need assistance with money matters such as bills, balancing a checkbook, and with making sense out of mail, insurance statements etc. that suddenly are confusing. ASK FOR HELP!
--When driving keep all distractions (noise, kids & animals) to a minimum. Defensive driving is easily challenged when the part of your brain processing information is slower than usual.
I had never heard of chemo brain before I found myself getting lost in my own neighborhood, forgetting the names of my close friends and leaving the stove on. The first things that came to my mind was that I was going crazy or the cancer had gone to my brain. My doctor hadn't warned me that this could happen. Vitamin B12 was helpful, as were the activities above, especially daily crosswords, brain games, much conversation and other attention focusing activities. Unfortunately I have been unable to return to my job in a high stress fast moving job but I am volunteering while I recover.
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