1/27/11

The Fog Of War

I've been having a lot more trouble with fatigue lately.  It's an issue that is very common for cancer patients, regardless of what sort of treatments one may or may not be having at the given moment.  The hard thing about it is that cancer-related fatigue is different from the sort of 'getting tired' that healthy people have.  Because it is different, it is nearly impossible for a person who has not had cancer to understand what this fatigue does to us.

First of all, it often hits us out of the blue.  One minute everything is running per normal, the next minute, without warning, we are (sometimes literally) collapsed on the floor, mumbling into the carpet. 

Second of all, although the fatigue can make us sleep for hours on end, we often wake up and still find ourselves exhausted.  Sleep is not always restorative when it comes to cancer-related fatigue.  You just have to deal with feeling like you've been run over by a truck.  Sometimes you deal with it by dragging yourself along your routine by sheer force of will, and sometimes you deal with it by sitting and staring mindlessly at the television until the fog clears.  Sometimes you deal with it by turning around and going back to bed.

Worst of all - at least for me - is that it often renders me unable to think clearly or function adequately.  This is often the hardest thing for people to understand.  I know there are things I have to do, but it's like I'm working with a huge sheet of cotton batting between me and everything else.  I forget the thing I was thinking about a minute ago, I forget appointments, I forget what I have gotten up to do.  I read the same paragraph over and over, and end up with no clue what it was about.  I watch a television show, and realize halfway through that I can't remember a thing about the last ten minutes... the experience has been completely erased from my consciousness, as though it had never happened.  People talk and I try my hardest to listen - but they sound like the teacher in the Charlie Brown specials: "wah, wah, wohhhh..."

Cancer presents me with a much more complicated schedule and set of organizational demands... and then takes away my capacity to deal with these things effectively.  This is really hard, particularly when organization has always been a weak suit and when so much of my coping strategies and interests are predicated on intellectual pursuits.  I live nearly entirely in my head - and now my head is full of oatmeal. 

A typical example: I was talking on the phone with a potential customer the other day, and she was asking why I wasn't going to the Weaver's Guild spin nights, or to Knitter's Guild meetings.  I tried to explain why I haven't been spinning much lately, and why it was impossible for me to commit to going somewhere for social purposes two weeks in advance.  I tried to explain that with Stage IV cancer, my energy levels are extremely uneven, and that there are days when I barely can make it from bed to the couch, much less get my coat on, lug my wheel (that 13 pounds is starting to feel painfully heavy lately) out to  the car, and then spend several hours trying to concentrate on both spinning and conversation.

She clearly didn't get it.  She quite possibly thought I was lying in order to avoid meeting her.  She probably won't believe me when I tell her that I literally kept forgetting to call her back in the last couple days, either. 

Intentions of Gold, Brain of Oatmeal...

So I don't expect most folks to completely understand this, and I certainly can't expect them to remember it at all times.  But it might be helpful, if you are the friend or family member of a person with cancer, to read this article on cancer-related fatigue from the National Cancer Institute.  It might save you some frustration with your loved one, and save them from feeling embarrassed or hurt or similarly frustrated with themselves and with you.  If nothing else, it might save everyone the tiring effort of having to go through the explanation of their inability to function per normal again.

6 comments:

krex said...

Still reading your blogs and thinking about you and missing you but not wanting to burden you with my inability to edit my long winded prose while you are struggling with brain fog and fatigue ...they are both nemesis of mine though not from cancer, just from ? whatever .

The waves start washing over the brain and trying to stay afloat feels like torture .

Wishing you peace without guilt .

Delighted Hands said...

Thank you once again for an insightful and invaluable post. You need a personal secretary-that would free you up to just be and not to have to keep up all the time!

Nancy K. said...

You may not be able to comprehend things that you are seeing and hearing as well as you'd like but you still do one heck of a job of expressing yourself eloquently!

Go easy on yourself lady. You may have forgotten more than many people will ever learn but you still manage to communicate what you are going through in a honest and forthright manner.

I'd LOVE to get a chance to spin with you!

Roberta said...

We have an ongoing joke at our house lately..."of course I remember" is what I say...then I get someone to whisper in my ear what I need to remember.
It sucks when you don't really mean to forget something, and someone thinks you did it totally on purpose because it's something even a child could remember.
That's the bugger of this disease.
Being a corporate wife and having it makes me very entertaining to my husband right now...I have all kinds of things written down everywhere. With all the jobs and places and people? I am the laughing stock of Rich's life right now...
Love you, Babe...
At least we are still in the same leaky boat together.

timary said...

Hope you are feeling a little more rested and energetic. I have been quite lethargic and in a brain fog myself lately, but you are right - it's not the same thing. Wish I could make you a cup of tea. xoxo.

mrspao said...

Hug xx I understand a bit about how you feel as you described exactly what I felt like when I was depressed. I know it isn't the same but I permanently felt tired then.