Chemobrain in the Irish Times

Lucy Atkins’s article on chemobrain for the Guardian in the UK struck a chord. It was picked up by the print edition of the Irish Times. Here are some reader comments.

Re: Cancer Fallout, Healthplus, April 28th

Dear Sir,

I read an article in Healthplus about cancer fallout which was very interesting to me as a cancer survivor.

Even though the section was about breast cancer, a lot of the after effects experienced by these women are similar to mine. I am a 28-year-old male who was diagnosed with non-Hodgkin CNS lymphoma in 2005.

Although four years on, this type of cancer is treatable, I went through all the treatment and am now in remission. But the fallout and side effects from it still make me worry that it might come back again because some of the symptoms that I presented with have not gone away, but the doctors have told me everything is fine from the scans that have been done.

As some of the women who had breast cancer and survived say in the article, the after effects of chemotherapy can be very difficult to live with.

Like the women who were describing some of the after effects of chemo on the brain, I too have had similar effects as well.

These include being forgetful and misplacing items, forgetting people’s names, etc. Sometimes I can’t remember certain things that happened just a few days ago – even if someone asks me if I remember certain things that we did last week.

Sometimes I have to go back to check whether I locked the front door when going out, only to find that I did, or having to check whether I rolled up the window in the car.

All these small things would drive a person mad. Sometimes when people are talking I have to say yes to them, to keep up with the conversation about something that happened. I could be trying to think of it, but just cannot remember it happening.

It can get so irritating at times that I ask myself is there something wrong with me that I can’t remember.

Confidence levels drop and sometimes one might get into a depressed state for a few days and get upset with people asking, “Are you all right, what’s wrong, can we help?”

You can get angry with yourself that you are unable to explain to them what’s going on when you don’t even know yourself why this is happening, but you get back out of this depressed state when something needs to be done.

There are also times, like now, where I have thought of something to say and I’ve forgotten it already.

Small little things like that can get a person down. Life can be difficult but we just have to keep going and try to put it to the back of our minds.

Any other information on chemobrain, or any information on where to obtain it, would be greatly welcomed.

Yours etc,

Conal Sadler,

Sheeaune,

Westport,

Co Mayo .

Dear Sir,

I had a mastectomy in August 2006 followed by chemo which finished in early 2007 – and to this day I can stop mid-conversation completely lost for a simple word.

I always say it is “chemobrain”, much more impressive than the so common “senior moment”! I do think it is a problem, much the same as being told that you may suffer from tiredness from chemo, whereas from what I gather it affects everyone.

Tiredness is not the right word for the utter fatigue I experienced.

Yours etc,

Anne Vaughan,

Templeville Drive,

Dublin 6W

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Reader comment

I am sitting here at my computer crying because I have been so affected by chemo brain and I have not been able to return to work. I live in northern Ontario, in Canada. There seems to be very little info about chemo brain and my employer has so much as said that I am making it up so as not to have to return to work. I work in a fast paced medical laboratory, and multi tasking is a must. I can barely function in my kitchen. I finished chemo for breast cancer in Nov. 2008 and I am 45 years old. My main problem is with very short term memory. I can perform a task and then minutes later not have any recollection of doing it. I grasp for words and have trouble spelling. Many times I know I need to accomplish something, such as putting on my seatbelt but I cannot figure it out immediately. I sit for a minute, and then it is like a slow-moving train coming around the mountain – Oh yeah, I need to do this. I am so frustrated trying to defend the fact that this is real. It was easier when I was bald and looked outwardly sick. At least then I felt I had credibility as to my illness.

Thanks for listening. Debbie Irwin

Chemobrain vs. smog in LA

A reader writes…
I am always bemused when the medical establishment finally catches up with what everyone has been saying for a long time.  All you have to do to know about chemobrain is go on chemo. I met countless other women on planes, buses, etc. while I was on chemo, who all experienced it.
Somehow we could instantly sense each other. It usually took about 15 seconds after saying hello to a total stranger to find myself deeply immersed in a conversation about how chemo was making it hard to think.  But it is good that now the doctors will believe us.   And it is good to live in L.A. and So. Cal. where everyone is a bit scattered. I have no idea by now what is chemobrain, what is information overload, what is smog, and what is being post menopausal.
Margie W.

Kate Jackson’s Pointy Universe

katejacksonGlobe writer Kate Jackson blogs about her treatment for breast cancer (invasive ductal carcinoma in situ, stage III, to be exact.) Kate’s vibrant personality and lively writing are all here, plus an ongoing peek into her eclectic iPod playlist. (Kate wrote a much-talked-about piece for the Globe on the meaning of pink Red Sox hats, a debate that will begin anew at Fenway Park when Red Sox season opens with an afternoon game against Tampa Bay on April 6. This debate tends to split along gender lines. (Why are pink hats any  less inauthentic than the green hats that pop up on St. Patrick’s day? You can read her piece here.)

Chemobrain and MENSA

esthipsynapses

A fellow Minnesotan writes about his lung cancer, and his thoughts about intelligence and memory. He also inveighs against the tobacco industry and its powerful marketing campaigns — and acknowledges that, yes, he smoked cigarettes.


I have read your book, ChemoBrain, and wanted to share my experience.   I am six years into remission from serious chemo and radiation treatment.  (You can read about my experience at http://sunweber.blogspot.com/)

When I was entering graduate school I had to take the Miller’s Analogies.  I missed only two of them out of 100, went through the questions twice and still turned it in when only 1/2 the time was gone.

This allowed me to get into MENSA.  My ability for all my life was to see patterns.  I could read various books on a subject, say the brain, without trying to memorize or learn for a course and end up with a decent knowledge of the subject.   This pattern recognition served me well as a psychologist.   I could hear a story and know the etiology as well as the missing or untrue parts because things from the storyteller’s perspective had to make sense.  Coupled with that I was very empathetic in the ability to walk in another shoes.  It was a gift but also a bane because I couldn’t not see the patterns of peoples’ lives. Also my writing skill was to think about something and then simply write it with very little need for editing afterward.

johnweber

After treatment, my pattern recognition went to hell.  Also my memory as you have recorded in your book but the loss of the pattern recognition was the most obvious to me.  Writing was arduous.  Emotionally, I literally felt in my body a reaction to someone’s tale of physical hurt.  Never had that before. To shorten this, I believe what was most effected was the amygdala and the hippocampus.  These limbic system parts of the brain deal with emotions and memory as well as are routing stations for these activities.

snapshot-2009-02-19-00-21-31

I don’t know if the actual structures themselves were affected or there connections going in and out especially to the frontal lobes.  Also my sense of smell became very acute which may have some connection the hippocampus. My faculties are slowly returning after six years.  Don’t know if it will ever be the same.  Also don’t know how much age is now playing a factor, I am almost 66.

When I brought up chemobrain/chemofog to my oncologist he shot it down.  I explained I was not complaining, I was glorious to be alive but it was definitely an experience.  I explained the MENSA connection and told him I probably would not qualify anymore.   I plan to give him your book. I am writing this both to thank you and if you wish to forward these thoughts to researchers.

JOHN WEBER

Longville, MN