Welcome to GBM Boot Camp...

*Clipart from Clipartheaven.com

 

 

What is "GBM Boot Camp"??

 

So many of us found ourselves completely overwhelmed when we or our loved one was first diagnosed.  One wife of a newly diagnosed GBM patient, wading through all the new terms, the Medicaid paperwork, and trying to research the disease online, said, "I feel like I've gone to GBM Boot Camp!"  And so the idea was born to put things you need to know about in some kind of order, and then write quick, easy to read articles on each topic so the new and overwhelmed have a fast reference and an easy place to start. 

Topics are written by members and friends on our Facebook support group.  None of us are medical professionals unless it says so in the articles we've written.  We're just people a little farther ahead on the same journey with a burning need to share what we wish we knew then. 

We hope this page is helpful.  It is still under construction and new articles will be going up as they are completed.  The red topics link to completed articles...lines in blue are topics for articles still to be written.

 Our goal is to have every heading on this page link to a helpful article everyone can use.  If you can write on one of these topics, please let us know!  If you have any suggestions for the page please feel free to email us or contact us on the Facebook page.

 

Remember...there's help...there's hope.

  

 Things you need to know and do right away:

Vital Information for the *Just* Diagnosed--READ THIS FIRST!

               a.) List of most common terms
               b.) What is GBM?  What is the prognosis?
               c.) What generally happens during the first hospital stay?
               d.) How long does the surgery last?
               e.) What happens right after? (24 hours in ICU, etc.)
               f.) Practical things to be prepared for during any hospital stay                       

 

What Karnofsky Scores Mean

 

     Diagnostic Tools
             MRI
             CATSCAN OR CTSCAN
             

     Know Your Meds: A Quick Medication Primer
            (list of most common medication, reasons for taking them & side effects)

 

   
     Clinical trials!  
         What are those?  
         Why are they important?  
         And how the heck do I get into one?

 

  How much detail does the patient need to know?

   Tell your family and friends        
         What and how much to say
         Best ways to keep people updated without being on the phone all day

 

    A good basic primer on brain tumors -- get one and start reading!
         List of book suggestions   
     

    Ride out your emotions:   "How do I stop crying?"

 

 


   Be ready for personality changes

 

 

   Get ready to deal with your insurance company.  
         If you don't have insurance, here is what you will need to do instead.

    Consider whether you will need help with transportation to doctor visits.


Things you're going to have to do in the next few weeks to months:

   1.) Find a good support group.
           Local community groups
           Active online groups  
 
 
  2.)  Link to some brain exercises that may help in recovery    

  3.) Get your affairs in order, even if your patient is doing well.  
   You never know what will happen with this disease, or when it will happen
 
 
  5.) Consider whether you need caregiver help now.  If you do, these tips should help!
 
  6.) Consider whether you need to prepare for funeral arrangements now.  If you do, these tips should help.

   7.) If you get into a clinical trial, find appropriate transportation and lodging.  These tips should help!


Things you will most likely need to do more than a few months from now, but may possibly need sooner:

    1.) Figure out how you're going to get by if you have to quit your job to take care of your person.  

    2.) Consider how to fit in the rest of your life!

    3.) Consider with your loved one whether he/she wants to donate his/her organs/body to research.

 


 

 

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