Chemo brain is real. The chemo drugs damage your brain and this is very frightening to those of us affected. Your brain actually shrinks.
The little research that has been done is enough to prove that chemo affects many people’s brain. Everybody’s chemo experience is different because everyone is getting a different combination and dosage of drugs. Some research is being conducted specifically on the effects of 5-fluorouracil (5-FU). Other research indicates that people with the Alzheimer gene are more at risk of chemo brain.
What are the symptoms?
Memory lapses, poor concentration, difficulty multi-tasking, language problems like forgetting words and names. The words come out all mixed up, or you can’t find the right ones. Difficulty making decisions. Less common are seizures, vision loss and dementia.
What is it like to have Chemo Brain?
The brain damage might make you feel stunned, and even high, in a strange way. Not quite like a hippie on LSD, (no hallucinations), but like a hippie after all the drugs after a decade of partying are worn off, and you try to be normal, but you’re not. Sometimes you will need people’s help.
Simple things can become challenging. You have to concentrate harder. People might not understand you.
However, you can go back to normal life but you must work to restore your brain. It can take years. All the survivors that I know personally, have gone back to their old jobs, with almost no problems caused by cognitive damage. I have heard of others who have not been able to cope with jobs that rely on a sharp memory.
I had two jobs before, I quit one that I hated, and kept the one I liked. I am a college teacher, and I think that I have become a better teacher since chemo. I am more focused (because I have to be), and I have become more structured. I do have memory lapses at the strangest moments. On the other hand I can randomly remember things that surprise me.
I asked my family if they thought I had fully recovered from chemo brain and I was surprised at their answers. (I finished chemo 4 1/2 years ago.) My husband said “You have changed in some ways. You have become savant in areas. Your priorities have changed. You are easily frustrated, and have trouble understanding things…things that you really should have no problem with.” My Daughter said “I don’t really remember what you were like before, but I think you are about 90% normal. If I explain something with a diagram to you, you can understand it much easier. Maybe you were always like that. Maybe your ability to do things in your head got worse. I was only 12 when you got sick.”
Mood Altering Effects
In addition to the chemo you know you are getting, you may also be getting other drugs that supposedly counteract your bodies immediate reaction to these drugs, such as steroids. That is why you rarely see people vomiting at chemo. They drug you so you won’t vomit til you get home. These drugs will also effect your mood and emotion.
Also you may go into immediate menopause which could effect your mood, but again, this is only temporary.
Bad advice from Doctors
Medical advice is to do puzzles, put up post-it notes to remind you, and keep a spot for your lost items like keys and phones. (Kill me now. ) More drugs d-MPH and Ritalin are prescribed for chemo brain. I will stay away from these.
My excellent advice
1. Avoid multi tasking - I find that I am fine if I I only do one thing at a time. But you have to train people around you by telling them that you are going to do one thing now, and then tell them what it is. During and after chemo don’t even expect to talk and make lunch at the same time. Choose one thing at a time. You will get a bit better at multi tasking with time. But I still avoid multi tasking when possible. It is more efficient and less stressful to do one thing at a time. Multi tasking is overated.
2. Don’t drive – I never drove during the whole 6 month chemo treatment or for weeks after . I drive a lot now, and am fine.
3. Make sure your family knows that you are mentally incapacitated. Yes you may be the butt of jokes like I am sometimes, but they will help you, and be patient with you if they know what’s going on.
4. Be happy when possible -It is often appropriate to be very sad, and angry, but practically speaking, if you are depressed it effects your brain function.
5. At social gatherings – drink less alcohol then everyone else! You will seem smarter.
What I am doing to recover
1. Nutrients – Everyone recovering from chemo needs a healthy diet, low in sugar and grains and extra nutrients
For my brain, I take
- fish oil 1200 mg a day
- Flax seed oil
- Vit Bs
- Vit E
- Vit C
- Grapeseed extract
2. Exercise – all exercise will help your brain. Once you start to recover try exercises that challenge your brain. Since chemo I have joined an ice hockey club, studied yoga, and have just started cardio-kickboxing class.
3. Creative pursuits – for me, returning to drawing and painting have brought back my hand-eye coordination, spacial sense, and made my brain seem to reconnect. I think playing a musical instrument would work too. Meditation likely has a similar affect.
Hey, if I can almost fully recover, you will for sure!