My Journey
Living with a Brain Tumor

The History of Medicine

2000 BC
Here, eat this root.

1000 BC
That root is heathen. Here, say this prayer.

1805 AD
That prayer is superstition. Here, drink this potion.

1940 AD
That potion is snake oil. Here, swallow this pill.

1985 AD
That pill is ineffective. Here, take this antibiotic.

2000 AD
That antibiotic doesn't work anymore. Here, eat this root...

--Unknown

Chapter 10

by Sandra Beardsley

July 2, 2001

Top Ten Pet Peeves About Living With a Brain Tumor

(If you are offended by anything on these lists please reread #10)

10. People who can't laugh at cancer. It can be so crazy sometimes that comic relief is what gets you through a difficult moment. It reminds me of the movie, Life is Beautiful. The main character is in a concentration camp and survives inside because of his humor and this is how he protects and helps his son survive.

9. Plumbers who come to your house and bound up the basement stairs exclaiming "I found the cancer! There's a pipe..." Okay I admit I did laugh to myself.

8. People who say "I'm not going to get an aneurysm over it." How do they know?

7. When you get an MRI for the umpteenth time and you are asked to remember everything from the last 2 years even though the chart is right there in front of them. I think it's really a secret test to see if your brain is still functioning.

6 a. Books and movies that appear to be harmless escapism and entertainment and then they throw a brain tumor into the plot. This has happened so many times to me that I am convinced that God really has a good sense of humor. Last night I was reading a humorous tale and the character was trying to find out what rumors had been told about her health. She guessed "Gall Bladder? Heart Attack? Brain Tumor?" Which brings me to another pet peeve...

6 b. The fact that brain tumors are always on the list of worst things that could possibly happen to you. How would you like it if something you had, was? In books and movies and everywhere else its in the list that includes; being burned at the stake, tortured by aliens, falling into a mountain crevasse, hit by lightning while golfing, and oh yeah... a brain tumor. What's up with that?

5. Alternative Treatments suggested by friends, family, acquaintances, and strangers. Let me begin by saying I am in no way discouraging someone with cancer to try alternative/supplemental/complimentary methods or for a family member or close friend to share information. I have used acupuncture and am working hard to use diet and vitamins as a way to encourage a healthy immune system. Whatever works for you and makes you feel hopeful and positive is a way to a cure. That now said... I am an intelligent woman and anyone that knows me can be certain I am researching and looking at all my options for treatment. I am not interested in drinking my own urine or spending 12 weeks sitting in front of a light ray beam in Mexico or Seattle. (That does not mean that these treatments have not cured someone) But if I tried everything offered I might as well give up control of my own thoughts. There are good alternative treatments and bad ones. There are reputable doctors and shysters. I can make my on choices. I realize that people want to help but it can raise false hopes, confuse and make me doubt my own decisions. Anyone with cancer is probably more aware of choices then you think. Just because a doctor goes on the Oprah show with a book on cancer does not mean it is the answer. This is up to the person with cancer. Ask if they would like the information to look over and understand if they say no. Please don't tell me I should try this or that unless you understand the emotion that comes with changing your treatment decision. Obviously this plan will sometimes change. I may sound like a hypocrite as I am sharing information about cancer but I am sharing my own story and would want anyone with cancer to make their own treatment decisions.

4. Looking healthy on the outside but feeling sick on the inside. When you look well people think you are healed. I have been struggling with exhaustion for awhile and am working on fixing this by reducing my work week, trying not to stress, and diet and exercise. It is a work in progress. When people see me they see the outside of me and make a big deal about how good I look but sometimes I wish I could open a little door so people could see the mess on the inside! I guess this is true for many situations and just emphasizes the importance of having people in your life that you can open that little door in front of and trust them to do the same.

3. Doctors who say "Well you know that eventually the tumor will grow back." No I didn't know that! Did you know that your bedside manner sucks!

2. The "One Day at a Time" slogan. Okay for all you "Friends of Bill" out there, it is a good concept.(and an important one related to alcohol and other addictions) but when not referring to addictions, it is down right impossible to do. I am here to tell you that there is not a human being out there that can do it. Okay we are striving for it but it is not easy. I am trying but it is especially difficult due to my years of training /programming as a teacher and mom. Very few of us can make it through a full day without thinking, "What am I going to teach tomorrow" or "Do I need to get groceries so there's food for the week." Like I said, I'm working towards this goal but lets see... I need to call and schedule an MRI and they are usually booked for a month or more... where's my calendar?

1. My final pet peeve is the fact that I can't seem to make it through an entire day without knowing I have the dreaded "C" word. It's like being forced (at gunpoint) to join a new club and it doesn't even come with a cute uniform or badges like the Girl Scouts. Maybe we should consider tattooing a C on our forehead and when we are cancer free a circle with a slash could be added. I do receive a really informative newsletter now... the National Brain Tumor Foundation newsletter. I usually put it our of view for awhile until I want to read it. Out of sight - Out of mind , NOT!

Because I don't want to appear ungrateful here is my list of the...

Top Ten Good Things about having a Brain Tumor

10. Great excuse for calling in sick for work.

9. "Not now I have a headache" will be very believable.

8. Don't worry about cleaning out your closets and those other projects you keep saying you need to do.

7. Heck with retirement! Spend it now!

6. When you are dealing with grumpy or moody people you can say..."You think you're having a bad day...")

5. You can always blame loss of memory on it.

4. People call you inspirational even though you feel like you couldn't inspire a cat to take a nap!

3. There is no longer such thing as a bad day, even though sometimes if feels that way.

2. You can learn not to sweat the small stuff. (I'm still working on this.)

and the number one good thing about having a brain tumor is

1. The world is suddenly even more beautiful than you imagined!

 

It sure felt good to get those pet peeves off my chest! Very therapeutic!


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