*****The CEO of a large HMO dies and goes to heaven. St. Peter shows him to a lovely villa, wonderful music, great views, full staff of servants, gourmet meals, etc. The CEO says, "This is terrific!"
"Don't get too comfortable," says St. Peter. "You're only approved for a three-day stay."*****
PNI, my new favorite concept that I’m trying to recruit you all into loving (See My Brain’s Owner’s Manual), is more than just a physiological process.
Really, what good would it be if we knew what the body did, but could not apply it to improve quality of life? That would make the information useless.
But it’s not.
This idea (that’s PNI), and its subsequent studies, proved that joy level is the second best predictor of survival in patients with recurrent breast cancer.
There was also a study done where every person was told they would be receiving chemotherapy and would lose their hair.
Instead they were given saline, a water-like substance, and 30% still lost their hair.
That’s probably why all my providers tell me how great I’m going to do, that I’ll just be a little tired or have mild nausea, before I start a drug.
I think this is mean and gives me unrealistic expectations. A lot of times I feel like a failure for not being able to control how my body behaves. I’d also like to prepare to be flat on my ass for months.
If a placebo can cause 30% of people to lose their hair, the honest truth regarding the side effects of chemotherapy alone could probably kill someone.
I’m pretty sure this experiment didn’t happen in the US. The review board (IRB) would stomp this idea back into the brain of the person who thought of it so quickly their toes wouldn’t see it coming.
Why am I telling you this? This information is no good, useless, caput, if it cannot be translated into patient care practices. It is easier to take bad news if it’s littered with amusing anecdotes, joy, or comfort. In theory, this will produce better patient outcomes.
Patients, Here are some suggestions:
1. Keep your sense of humor, have positive expectations, hope & trust in your medical treatment, play an active role in healing (asking questions, following guidelines, watch funny movies) and stay relaxed
2. Enjoy your providers and the hospital. You may have to look hard. Repeat before each appointment “I love Dr. X, he takes good care of me, I can’t wait to see him” or “I love the coffee in the deli” “I can’t wait for those danishes, they make me so happy” or “I’m getting some free newspapers & magazines along with my free candy, YAY.” I know it’s a stretch.
3. Train your brain to like the experience. Fake it until you make it. Eventually, you can force a happy event out of the day. If you are forced to do something, you might as well enjoy it. Tag shopping to the end of the appointments or lunch at your favorite restaurant. Cancer is a good excuse to eat just about anything. Add something that will associate the hospital with a good feeling.
4. Focus. We all, cancers patients included, do still have a life and responsibilities. Start delegating now and slowly ease out of your responsibilities before treatment if possible.
5. Relax and eliminate stress. Not possible, go to the spa, see a chick flick with your girls, drink some beer and play pool. Do whatever it is you do, but look out for you.
6. Increase the level of humor in your life, tell jokes, watch comedies (do not watch horror films), be witty, bring around the friends who make you laugh
7. Share your expectations with your support group. Everyone needs to know upfront that severe sadness and stress will not be tolerated. It may creep in, but set a time limit. Do not allow, or remove, negativity.
8. Spread good humor and show optimism.
Providers, you did not think this was all about the patients did you?
1. Gain an awareness and knowledge of the benefits of humor. Adopting a humorous outlook takes both a change in attitude and behavior.
2. Identify inappropriate humor. Avoid it. This is any type of humor that can be perceived as offensive to others. Humor should not be divisive.
3. Get to know what amuses you. What type of humor works for you on the job? What feels comfortable for you? Never tell a joke or a story unless you like it yourself and think it is really funny. It must be genuine.
4. Remember your favorite jokes, comedians, styles of humor, humorous situations that happened to you, TV shows, and movies. Keep a file of humorous anecdotes, stories, jokes, and cartoons. You can reuse material. No one will know.
5. Allow yourself to be silly.
6. Surround yourself with people who have a humorous, positive outlook. Best of all, learn to laugh at yourself.
7. Get the patients humor rooms, humor carts, humorous videos for patients to check out. Invite guest performers such as comedians, magicians, or clowns.
8. Have a cartoon bulletin board with favorites from staff and patients displayed each week, or prescribe a daily dose of me, whatever.
9. Join the American Association for Therapeutic Humor, http://aath.org/.
Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.
He has since died, and I took on the cause of making cancer care more transparent for everybody.
Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."
I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.
I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."