What's wrong with me? I don't want to read!

sandra4611

I love to read. I took books to the hospital and had prepared for my return home with a stack of new books I couldn't wait to dive into. Why were they still sitting there two weeks later? Until recently, I thought I was the only one who had gone through this phenomenon. I never brought it up because it seemed to be a frivolous complaint, especially when so many others had real concerns. Still, as a book addict, it was distressing to think I'd lost something important to me. Oh it wasn't because I couldn't read. I read articles in the newspaper and read posts on Facebook. But the thought of delving into a book turned me off. I tried but after a few pages, realized it was useless. I'd just lost interest in reading. The good news? It didn't last. The bad news? It comes back.

I knew about chemo brain and the fog that is so common during treatment...but I hadn't had chemo. Was it just a peculiarity of that particular surgical recovery? Nope. It happened again on surgery #2 and #3. It couldn't be because of pain drugs...I can only take Tylenol. Could it be due to general anesthesia? No, I changed to TIVA (a different kind of general anesthesia that doesn't use gasses) for surgery #4 and #5 but the phenomenon reared its ugly head as usual even though TIVA has a very short half-life and does not linger for a week or more like traditional general anesthesia.

I know now from talking to others that this is likely to happen to many of us...maybe ALL of us. Knowing it's normal is one thing, but I want to find out why it happens in the first place. Could stress hormones play a part? Does it happen to everyone during treatment? Does it matter what kind of treatment? What do you think? Share your stories. 

WinningSoFar

My theory: reading takes energy, which only becomes obvious when you have less energy available since our body is using it to heal. When I was in the hospital for a month (very serious bowel perforation), I didn't even watch TV because it took too much energy. I just stared into space, and believe me, I was not bored. It was just all I could do.

farmerlucy

It totally happened to me. I consumed books prior to my dx, especially on vacation - I'd read 4 or 5 over the week. After BC I did not want to read anything except of course BCO! This past summer, two years out, I finally finished a few books. I'm not back where I was, but it is improving. Very interesting post Sandra!

Tomboy

Great topic! Also, the anasthesia that I had during lumpectomy? I hurt EVERYWHERE! i am wondering if when I had my port out a few weeks ago, they must have used something else, cause I came to, much more easily, wasn't nauseous, and didn't hurt, anywhere! I am going to insist on that one if I ever have to again. I will repost what I had said on the other thread.. (.Mmmmmm, netflix was my friend. I still would TRY to read, I would hold the book or the kindle, but my eyes would unfocus and my mind would wander. But then again, I have been doing that since I was a kid, I always got in trouble for daydreaming. I mean daydreaming to the point of i was in my dream so hard that the world dissapeared, and then someone would call my name or shake me and i would come back. So, I just thought it was more of the same. Except everytime I lay down, or sit, or am a passenger, or waiting anywhere, I am reading.) sandra, I clicked on the link you made in book lovers, and it didn't work, so I clicked on your name to see where you had been, and found it thanks! I hope people come here to tell how anaesthesia affected their reading.

linda505

Gosh- never thought about this but i read alot prior to BC - haven't picked up a book since diagnosis. I don't know that it has anything to do with concentration or just lack of interest? hmmm

Mischief46

I am usually always reading a book, but after surgery I couldn't focus to read. It was frustrating because I love to snuggle in with a good book. I had 3 books I had saved for "after" when I would have so much time to read but then I couldn't focus enough to do it!!

horsemom

a friend gave me a couple puzzle books and two mags to keep me busy while I recover. I also love to read. It's 11 days out and I have finished a couple puzzles(easy ones), but haven't touched the mags. I taped some really lame movies that take me a couple of days to watch a single one. Weird. I hope I didn't lose the love of reading!

Nash54

Interesting....I've experienced the same thing. I just figured I couldn't get my mind to stop worrying about BC. I can flip thru a magazine but forget about trying to read a book.

hummingbirdlover

I completely agree, I've always loved to read but haven't picked up on book since dx. I can't concentrate on anything long term but this website has totally captured my attention and I'm on here a lot. I can barely focus on a movie even. I've put in several DVDs just to lose interest and pop them back out.

Teacher64

I could ditto all these comments. I love to read and after each surgery the past year couldn't focus at all. I had the same books to read in March that I'd had in December, which is crazy for me. It also too be several days to watch even the most mindless movies. It seems to be getting better although I don't read as much as previously. I'm hoping that now the weather is getting cooler, I will be able to read with a cup of tea while my dog sleeps (snores) beside me

wrenn

I attribute mine to internet caused ADHD. I am so used to searching the net and switching from topic to topic that I have trouble focusing. I was looking through an Ikea magazine and actually glanced to the lower right corner to see what time it was.

I still collect ebooks because I see a title and know it is one I will love but it never gets read.

JAN69

Me too! How weird is this! I'm still not up to my previous interest, but it is getting better. I'm 3 1/2 years out and have wonderful books ordered from the library system, but about half go back unread. It probably took more than a year before I picked up a book. I'll be watching this thread with great interest. Jan

AmyQ

Ditto to everything you ladies have experienced. Just now almost 15 months after my last chemo I am slowly getting back into reading novels. ADD is how my mind feels, all over the place.

sandra4611

Fascinating. Keep your ideas and experiences coming. Speculation welcome.

Moonflwr912

Oh. Yeah! This hit me hard! I generally read the a book a day plus the newspaper. And maybe a couple of magazines. Nope not after surgery or during chemo. I had zero energy. It took me all day to read the newspaper. And that wasn't even all of it. Never mind a book. I could read a magazine article if it was short. Also, I make jewelry. I didn't make anything new during chemo. It's finally coming back as I designed and executed a few pieces this year. I have gone back to reading 4-5 books a week. But after every sx, it was back to making it through the newspaper one article at a time. My 9th sx in 3 years (well 10 if you count sinus sx) was the same.

I think our bodies need to heal and all our energy goes to that. I too just sat and allowed the TV to play. I rarely changed the channel as it required too much of me. Pathetic....

Andrea623

Me too! I have Nook and Kindle apps full of books and I've read maybe a book and a half. I have no concentration to read anymore. It's frustrating cause normally I love to read!

lyzzysmom

Add me to the list of those having difficulty reading. I have put it down to surgery rads and tamoxifen, one thing after the other. I had no chemo. I am a programmer and I can still do that up to a point but trying to read anything longer than a page is impossible. I was doing a photography course pre dx and its funny that this thread should start today as I have been able to take pics but I have not even been able to read my coursework which I was enjoying so much pre Dx. Today I finally picked up some of the course notes for the first time in months. I also read a long article in a magazine this week for the first time and yesterday downloaded and read several pages of a Kindle novel but doing too much reading does my brain (and eyes) in. I so want to continue with my course so I am encouraged by being able to read a little this week but my concentration is still only about 50% and my programming skills not too bad where I have lots of experience but learning new things that require a lot of reading is impossible. Fortunately I am only part time now as I could not face doing this full time since BC Dx.

I am thinking it is not helped by the Tamoxifen since August as I have recovered from rad fatigue it has made my sleeping which was bad to start with even worse. I finally got some generic Ambien from my PCP yesterday but that did not help much last night and as for my usuals -Lorazepam - my PCP like me to limit them, and my Unisom - my onc likes me to limit them..

I exercise regularly but still have a lot of fatigue and still some pain on the surgery side although its more of an annoyance than painful.

I do hope that we can eventually get past this as like so much with BC, only we get it. I passed up on an event I really would have enjoyed this weekend due to this general tiredness although to "outsiders" I appear fine, just a bit indifferent or lazy I guess.

Radical2Squared

hose on the book lover thread know my theory. Those who love to read really get into books. Vivid pictures and details about characters are created in our minds even if the author doesn't give them to us. We think about what we read and assimilate it into our own lives. That is probably why we love it!

All that takes energy...many of us are out of that. It's much easier to turn on the TV and zone out.

mefromcc

I think I am the exception that proves the rule. I have been reading at least a book a day, and have been completing Sudoku, Mahjong and word puzzles after my surgery 3 weeks ago. Using my brain helps keep me from focusing on lower level pain. But I don't get one type of medication that is normally used for procedures done with either local or general anesthesia. I don't tolerate tranquilizers. If I am given Xanax, Valium, Versed, or similar anti anxiety drugs I get wild and combatant. Versed is given to induce a waking amnesia, so you don't remember a lot of what has happened. They inject something into your IV and the next thing you know you are "waking up" in Recovery. You don't know that they had you sit up while they wrapped the ace bandage around your chest, and asked you to scoot over onto the guerney. You don't remember thanking every one for taking good care of you as you are wheeled out. Me, I do because I didn't receive the memory altering medications. So how many of you who are having trouble concentrating reading have had the tranquilizers? Hope this has added to your research.

Wren44

Next week will be 3 years from my diagnosis and I'm still having problems reading. I used to devour books wholesale. Now it's really tedious to read at all. I feel like an impostor at my book club which has too few members to be able to fake it. It's not that I can't focus, I just can't get into the characters and plot. They don't interest me - with a few rare exceptions. I feel like I'm reading a lot and it's only been 30 pages. I did have the tranquilizers, but they've never had any effect with previous surgeries and it was years ago. It's almost like BC changed me and the new me doesn't like to read.

sandra4611

I have found some information. This syndrome HAS been recognized and taken seriously by physicians. Why they don't tell us about it, I don't know. It even has a name...POCD (Post Operative Cognitive Disorder.)  Here are three excerpts from a website called Anesthesia: Things They Never Taught You At Med School.

Causes of POCD

The great variety of factors predisposing to POCD, or altered mental function after anesthesia and surgery, means that there is not one single cause or mechanism inducing this unfortunate condition. Accordingly, POCD is not explained by the simple one-liner: "Anesthetic drugs linger for a long time in the body and cause POCD." In reality, what does happen is that the effects of anesthesia and surgery on the body interact with the body through a variety of different mechanisms within the body to induce a final chain of events expressed as the cognitive dysfunction manifested by those with POCD. So what are some of the possible causes of altered mental functioning after anesthesia and surgery?

• Residual effects of trace concentrations of anesthetic, sedative, and painkilling drugs.
• Hyperventilation induced prefrontal dysfunction. (This will be discussed on another page of this website).
• Metabolic effects of surgery.
• Pre-existing abnormal mental function.
• Post traumatic stress disorder (PTSD).

---------------------------

Metabolic effects of surgery

A surgical procedure is a form of injury, and the larger the injury, the larger and longer lasting the effects of operation upon the body. I discussed this earlier in this piece, comparing the metabolic effects of major surgery to being hit by a truck, only with tidier wounds. Everyone understands that recovery from such an accident with a truck will take a long time. Major surgery is the same. It also causes major injury to the body, even though the intention is to cure or manage a disease. Major metabolic changes lasting weeks and months occur in the body during recovery from major surgery (Hill 1993).

-------------------------

Psychological studies of, patients having undergone operations reveals a reasonably high incidence of PTSD after having undergone anesthesia and operation. For example the percentage of patients developing PTSD after anesthesia and surgery for various conditions are: about 23% after breast cancer surgery (Shelby 2008), about 25% after peritonitis secondary to abdominal operations (Levenson 2007), 20.7% after hospitalization for civilian injuries (Zatzick 2008), 56.3% after experiencing awareness during an operation performed under general anesthesia (Osterman-2001). These are very high percentages. Anesthesia and surgery may actually cause more dysfunction than most clinicians seem to think.

==============

Here is the link to the whole article. I haven't read any further than this but am going to begin following up on the footnotes. There are other pages on the website that I haven't gotten to either.

http://www.anesthesiaweb.org/dementia.php

 

 

farmerlucy

I was worried it was early onset Alzheimers, so I am relieved to know I am not alone. I did anxiety meds for a year after diag, but none since but I do take Effexor. Part of it is my eyesight. You know I don't really care that the original boobs are gone, it has never bothered me at all. What does bother me is the fact that I can't see up close. Now 20/20 vision without glasses I miss!

mefromcc

Sandra, I will tract down that article tomorrow and read it. I actually suffer from PTSD from something that happened when I was in the Navy in 1975. I have been on medication for it since the 1990s and am in maintenance therapy at the VA. I have had major surgeries both before and after I started medications. Yet I never had had trouble reading after any surgery. I am certainly interested in exploring this whole topic further.

IngridJ

I've got this too....Can't begin to start reading a book although prior to diagnosis reading was my mainstay...Its weird...

Keep thinking its just because I am so busy and when I finally get a break then I will start reading again...hmmmmmm now not so sure!!!

Teka

Sandra,

I read last novel in 2009. January 2010, Dx with TNBC and now only read newspapers and magazines. I loved reading on the front porch during the Summers and in bed during the frigid Winters. I am going to force myself to read, the 5th in the series of Jack Aubrey novels by Patrick O'Brian, during the frigid Winter of 2015.

I'll continue to update my progress! ;o)

badger

Interesting topic!  Surgery made me foggy but chemo put a crimp in my reading habit.

Had propofol for both biopsy and mastectomy.  It was not hard on me physically but it did give me cobwebs. I'd say it took a month of mental recovery for every hour I was under anesthesia but I could still read OK.

During chemo I had no ability to concentrate on the plot and characters from page to page.  I would turn a page and forget what happened on the previous page.  For a long time, I stuck to magazines and old movies on TCM.

I'm back now to my normal voracious reading so it can come back.  Good luck!

kkuziel

I'm so surprised to hear this from so many women. I too have not finished more than two books since my diagnosis. At first I chalked it up to having gone from hold in your hand books to having them on my tablet. So I bought a book about six months ago. I started reading it, and have yet to finish. I too used to read a book a week. I actually miss it, but can't seem to change the tide. Perhaps it is related to PTDS. Cancer can certainly traumatized you. Hopefully this too shall pass.

Tomboy

I AM back to reading, it was just right after, for a few months.I can't even remember now if my reading was "normal" for me, after hearing DX.

barsco1963

Interesting topic for sure. I too have been an avid reader. Used to be that I would rather sit down and relax with a good book than watch tv. Another favourite pastime was jigsaw puzzles, especially sitting by the fire on a cold winters day. It hasn't been until recently that I have started enjoying books again, however I haven't been able to rekindle my interest in puzzles as yet.

sandra4611

Barsco...puzzles! I hadn't even thought about it, but now that you mention it, I agree. Jigsaw puzzles have always been a pleasure. My husband has made me special coverable boards and sorting trays so when my cats want to "help" they can't do it when I'm not there. It's been a tradition since we were married for me to have a new puzzle for Thanksgiving and for New Year's Day during the parade on t.v. For the past 28 years I've brought a puzzle to the annual Thanksgiving & Super Bowl get togethers of a group of close friends and while it only began with one or two of us participating, now as many as a dozen people will pass by the puzzle table and sit down for a while. People look forward to it. The same thing happens at Super Bowl time (held at the same house) so if the puzzle I brought for Thanksgiving was a tough one, we'll finish it at Super Bowl before starting a new one. My BMX was in August last year and friends knew me well enough to bring me a puzzle for those long recovery days. I've never opened it.  I had another surgery and a protracted recovery from complications so the hostess of the Thanksgiving feast told me she had found a good puzzle. I didn't need to look around for one and could concentrate on recovery. Good thing since getting a puzzle had not even entered my mind. On Thanksgiving day I sat at the puzzle table and watched others open the box and begin - but had no interest. I told myself I was just tired and would come back later. Never did. Barsco, thanks so much for bringing this up. Now I know it's all connected. Here it is a year later and I'm a month out from surgery #5. I wonder what will happen at the puzzle table this Thanksgiving.

BookWoman

This has been very interesting. I never totally lost interest in reading, but I found that I had a very hard time reading anything i had to concentrate on. Before, I would read lots of nonfiction as well as novels. After surgery all I could handle would be light romances or cozy mysteries. Now I am getting back to the type of reading I did before, although I still find it hard to get into professional reading--good thing I will be retiring before too long and won't need to take anymore classes to keep up my license. I have a friend in a book group that has said the same thing after her BC.