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More Tips To Help Multiple Myeloma Patients & Caregivers Stay Positive

Home/More Tips To Help Multiple Myeloma Patients & Caregivers Stay Positive

More Tips To Help Multiple Myeloma Patients & Caregivers Stay Positive

As promised, here are more helpful and uplifting tips from our fellow multiple myeloma patients:

Ted was kind enough to pass along a list with 13 great suggestions:

Here are a couple of things that kept me positive during my chemo and SCT (stem cell transplant).  I don’t know if they are all relevant to your subject of being positive “when dealing with side effects” but they are all things I did to stay positive during my transition from MGUS, smoldering MM, SCT (5/ 6/10), and now remission.  I hope there’s something in my list you can use.

  1. Learn all you can about the disease you have.  Ignorance breeds fear.  Knowledge can combat fear and can give you hope.  My understanding of this disease has evolved from “It’s hopelessly incurable,” to “It’s hopefully chronic and something I can live with.”
  1. Surround yourself with medical professionals you can trust.  Second guessing can leave you depressed.  I left the first oncologist I had because I just didn’t have that gut feeling of trust.  My second oncologist is a gem.  The first was recommended by my primary care physician (and was in the same building as him).  The second my wife and I found after an exhaustive search and a lot of questioning.
  1. Cultivate a positive mindset.  Mine just happens to be that I’m lucky.  When I had MGUS, I thought, “How lucky.  It could be something worse.”  When my MGUS turned into smoldering myeloma, I thought I’m lucky because it could be active MM.  When it did become active, I considered myself lucky that I was surrounded by caregivers I could trust.  Now I’m in remission—how luckys that?
  1. Cultivate a positive identity.  To a certain degree, we can choose our identity.  To a certain degree, we can choose to be victims of an incurable disease or survivors of the latest round of treatment.  During my treatment, I was surprised by how many nurses I ran into who were survivors of cancer of one form or another.  They saw themselves as survivors and I found this inspiring.
  1. Get yourself a cat.  (Or if you must, if you’re a dog person, get a dog.)  One of the neat things I’ve found about cats is that they seem to be empathetic.  More than one night I’ve sat on the edge of the bed, anxious for no apparent reason, only to have my cat come into the room, climb up into my lap, and seemingly drain my anxiety out of me.  (This probably fits into the category of curing leg aches with a bar of Ivory soap under the sheet.)
  1. Be carefully of what feeling you act upon.  I’ve read it somewhere and it has been my experience that if you act on a fear, you reinforce that fear.  Act on it enough and it becomes a compulsion.  If on the other hand, you choose to act upon positive feelings you have, those get reinforce instead.  Act as if.  (I know there are a lot of self help gurus peddling this, but there’s more than a grain of truth to the idea.)
  1. Exercise (and stretch).  It was a regimen of stretching that finally brought me some relief for my leg aches.  (I still keep the bar of Ivory soap in a sock under the bottom sheet near my legs just in case.)
  1. Throw yourself into a hobby.  I took up drawing when I was first diagnosed and it has supplied me with hours of positive relief. 
  1. Plan for fun.  Years ago I had a problem with blue Mondays.  A mentor told me to plan something fun, something to look forward to for Mondays.  The anticipation of something really fun seemed to counteract the dread of Monday.
  1. Look for surprise and fascination in what you’re going through.  For example, when I was hooked up to the aphaeresis machine to harvest my stem cells, I couldn’t help but be fascinated by how they could supply suction to a “closed system” to make your blood come out of your body, move up and around and through the tubes, drop off the fraction of blood to be harvested and flow back into your body.  Even the nurses that ran the machine were interested in the mystery.
  1. Be supportive of your caregivers.  As I sat here typing this, my wife called me, a little be weepy, and told me she ran into a pillar in the garage where she works with her brand new SUV.  She’s fine, but her brand new car isn’t.  Suddenly, I became the caregiver.  All my troubles were forgotten. 
  1. Don’t mind read.  It’s easy to fall into the habit of attributing bad intentions to everyone who disappoints us, thinking we can read their minds and find that evil reason.  More often then not we’re wrong.  I’m less disappointed if I assume all my friends have positive reasons for doing what they do and acting on that assumption. 
  1. Sleep.  I hate to admit this, but nothing perks my mind up like a good nap, even if I don’t need one.
Some of these may be repeats of ones that have already been said; I didn’t go back to check to see.  I hope they’re helpful.
Very helpful, Ted!  Now let’s check out this fun list, submitted by Dianne from San Diego:

Well, what I do may seem strange to some, but… you go.

1.      I sing aloud or just sing to myself songs such as—if you want the words, I have them in my computer.

·        Zip-A-Dee-Doo-Da
·        Ac-cent-tchu-ate The Positive
·        Keep on the Sunny Side
·        Get Happy (Forget You Troubles and Just Get Happy)
2.      I watch funny or feel good movies

3.      I read positive or humorous books—or at least spiritually enhancing ones.

4.      I focus on gratitude—make a mental list each night and morning of things I’m grateful for.  If the mental list isn’t working, I write my list in a book I call “The Book of Positive Aspects” (name I borrowed from Esther Hicks’ writings)

5.      I tell my dear significant other/caregiver how much I love him.

6.      I focus on telling other friends, family members, acquaintances “Thank You” and “I love you” (when appropriate)

7.      I go to the zoo.

8.      I encourage someone else in the chemo room.

9.      I hug the phlebotomists and the chemo nurses.

10. I complement the medical care providers and assistants whenever possible—I call their supervisors when I have the time/energy.

11. I avoid the news

12.  When I find myself getting down, I do more of the above.

I must admit that all my best efforts are less than enough when I am on steroids.  Therefore my decision to enjoy life and stay off of steroids.

Thank you for asking.

You are welcome, Dianne!  I will post more of your helpful thoughts and suggestions tomorrow.  I have received so many positive contributions over the past few days I have decided to establish a spot on The Myeloma Beacon’s Forum Page to include more–and so everyone can keep the ideas and positive energy coming!  

Until tomorrow, you have all made it is easy to say:  Feel good and keep smiling!  Pat