Tyranny of Positivity

So many times since I first heard those dreaded words, I take deep dark falls from positivity....and for me, I seem to get less positive as time goes by...I'm constantly aware that the shoe could drop any minute.  That being said, I fight hard on a daily basis to "send" the bad thoughts on a hike....Like you, Barb....I too have something inside me that has me thinking that if I give in to negative thinking, that if I don't fully believe I am cured...that cancer is waiting to jump on in and take over....so when I go into the dark place, I get even more scared.  That's probably hogwash...but I can't seem to send that one on a hike.  All that being said, tho....I tend to see a bright side a lot of things....and a whole lot of humor in most things.

Today I woke up knowing that I'm in a wait mode over the lymph node, and made a decision that it is going to be nothing....I tried to use logic....like, I don't have anything that I can feel going on, on that side of my head that is new....and God knows, I do a mental check every day when I wake up...LOL.

As far as other people go....I know they honestly don't know what to say....and there are times, too....that I think we actually look better than we think we do, or they thought we would....I've seen those lists of things "not to say to a cancer patient", and I think they're bunk....it all depends on the person being addressed.  Mild aquaintances, and light friends....don't know us well enough to know what to say...and those close to us probably wouldn't tell us we look great when we look awful....they'd probably just say nothing about how we look, they're just glad we're there. 

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It talks about depression and how so much of america is on them, which is true in some cases. There things that will depress everyone [with any feelings] such as a Major illness, or loss of a loved one. That is NORMAL feelings and most will get a little depressed and should if they have feelings. First there way too many doctors that will say you seem depressed. Well of course you are if you just lost someone. It doesn't mean you need meds for it. Everyone deals with greef different and some takes a little longer that others. Many will take a mild antidepresant when they fight cancer or have panic attack. After my surgery I was fine with breathing through my neck and even was breathing better. However my COPD flaired way up and through me into a panic attact while at work. Everyone said I was turning gray in color and breathing was very rapid, 125 setting at my computer doing nothing. I went streight to my doctor and he sent me to the ER. The problem with having an attack is you feel you can't breath or get enought air, which gets the adrenaline going and up goes the heart rate and rapid breathing so there goes more adrenaline and the circle starts. I have learned ways to controll it, but I do have to take a mild Xanax for it. I have to work harder than most becaues of COPD just to breath and it can be hard on the heart but I have been tested and it is very good, just fast.

The other thing they talked about is when someone ask, "how you doing". They don't mean it as it was just something to say. This is excluding good friends that really do care. People want to hear that you are ok, even if you arn't. When you get a major illness most people just can't or won't want to hear about it as it makes them uncomfortable and they don't know what to say. You will also notice some "friends" will drift away and just slowley disappear. Now your true friends will be there without ever asking them and when they ask, how are you doing they really want to know as they do care. I don't blame the ones that drift away even tho it can hurt when you have known them ever since you were five. Yes that has happened to me. My longest and what I would call best friend. My wife was very sick so we had nothing to talk about that would not depress him, so he just driffed away.

Sometimes it is also easier to talk to a stranger than a family member. You don't want to worry the family. I did not like the term and I would watch her, and what she says.

Bill

This topic just came up the other day when I was talking to one of the nurses at my cancer center. Usually my attitude is pretty optimistic and I feel very grateful to have come through treatment with only minor issues, but when the oncolgist wanted a PET scan to check for recurrance, my resolve to stay positive definitely wavered. I've been volunteering to talk to newly diagnosed H&N patients and feel pressure to be upbeat to quell their fears. I try to stay positive for my husband and one of our children, since both are disabled and depend on me for so much. I was also a teacher at a Christian high school when I was diagnosed, so there's pressure to be a model for my former students. My faith is strong, but the uncertainty of the time between now and Heaven is my biggest hurdle. One of my best friends has been a godsend. She's been through cancer and I am able to talk about everything with her. I think we provide mutual therapy! 

I read your post with delight and somewhat saddness as my situation is roughly the exact opposite of yours.  I was the patient, the optimistic one who knew deep inside that even after the discovery of the primary on the base of my tongue - isn't that a rush when the ENT says "I think it is malignant" - that I was going to be just fine.  Sure, I'd be sick, in those first few days all I knew of cancer treatments is that I'd be sick and have pain, but even still, I was going to be fine.

My wife on the other hand, my caregiver, was much more negative, she has a tendency to go to the most negative places, I swear she wrote me off more than once in this most challenging of journeys.  Even to this day she's terrified of any of my doctor visits, that they'll find a recurrence, or something worse.  All I need to do is cough and she's "are you alright" and you can hear the fear in her voice.  It gets very daunting at times.

I've read commentaries that being positive, having a positive attitude can help drive the healing process, I've read studies that finds no links either, but I can't help but wonder if there is some innate sense in an individual that tells them what their outcome might be regardless of what challenge they face.  Did some inner clue tell me that I'd be fine and that drove my rampant optimism, or did my positiveness drive my 'success' during treatment.  I have no idea but I walk through life with a positive attitude, I firmly believe that every 'cloud' that intrudes into our lives has a silver lining, you just have to find it. 

Malcolm Gladwell wrote a book "The Power of Thinking Without Thinking", it hit the market in 2005 and in it he describes peoples abilities to "know" something without ever having any real indication.  I've seen in when I've watched sports events, saw that a play would score even before they ball was thrown.  I have no idea how I knew, but I knew it just the same.  I knew I'd be a survivor.

At this point I"m 3-1/2 years out of completing treatments,(stage IV-a) my check ups continue to be clear, so much so that my ENT moved me from their regular practice to what they're calling their "survivor's clinic".  I was very pleased to hear them say that, so at this point, unless something really odd crops up, no more scans, no more scoping, just a check up and an annual chest x-ray.

It may sound corrny as hell, but I do believe that attitude is everything in life.

I read a piece by Francie Baltazar-Shwartz simply titled "Attitude is Everything" many years ago and it summed up my outlook on life and anything and everything that has happened in it. 

Find it here  - http://www.spiritual-endeavors.org/inspirational-stories/attitude-is-everything.htm

I am a twin so when someone asks me how I'm doing, I can't really say "if I were any better I'd be twins", so I simply say

"fine as frog hair and as rare as chicken lips"

Positive does work....

This isn't related to what you asked but what about all the new treatments for cancer that are in the news.  Isn't there any of them that you husband thinks might help people with head and neck cancer?

The nurse that was assigned to me, and several people have asked me one question. Why I never went through the stage where you ask, why me, why did I get cancer or this happened to me. I told her I smoked is most likely why, but it really doesn't matter why does it. What matters is, what am I going to do about it. The why dosen't matter and it sure won't help you any. Yes I was scared, yes I thought I could mot make it with knowing I have had it for about a year and the amount of blood that I coughed up turned my son pail white the time he saw it, it must have been 1 to 2 onces [30ml - 60ml]. The coughing was getting worse by the day. I just knew if they cut this tumor out, I would be fine.

I had accepted it going into surgery I was going to have my voice taken from me. I might loose my thyroid gland, but I have taken that for 50 years so if they removed it that is no big deal. I knew what they were going to do in surgery and how long it could go. I would just sleep through it. I knew that most likely I would wake up in ICU and be there a few days. I went right to my room and no ICU. I didn't look foward to going through chemo or radiation, but if that was what it takes ok. I had my hair cut short [to me it was short as I had a 9" ponytail] well more of a shorter cut. The research said you loose more hair if it is long. Have no Idea it that is even true. So in short what do I belive.

Accept it, never give up, fight and do what they tell you and more, believe, and be honest if you hurt or scared admit it don't lie to yourself, and prayers don't hurt ether. I never put on a false persona for anyone.

Bill

I guess I am just curious as to how others feel about being positive and whether they ever feel pressure to be positive, and how they utilize (or don't) positivity.

The way I view and live this topic is having a jar of quarters, each one represents some amount of life - the total being my time remaining on earth. When negative events occur leaving me totally pissed and angry, I immediately look at my jar, grab a coin, grasp it tightly, then ponder whether it is worth throwing it afar or returning it. After a moment or two or three or ... I come to the realization it is far better to keep my jar full rather than letting my negative moment make my jar less full.

Doing this ensures the day never arrives where I am holding an empty jar wondering if those neagative moments were worth it. 

Life is precious and limited - each moment better spent feeling good and positive about life than spent feeling bad, angry, scared, anxious, or negative.