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When diagnosed with a BT, there are many people you will want to consider how you will communicate:
1. Caregiver (may or may not  be your spouse)
2. Family and Friends
3. Doctors
 
Caregiver: As a couple we talked openly about Mike's disease and how we were feeling. (Although not all patients and caregivers will be husband and wife, it is so important for a patient to have someone they can communicate with and feel “normal”). The patient may be going through changes due to medication (see symptoms), or may experience fear and worry about abandonment. The caregiver will need to talk as well.  I found it helpful as a caregiver to join online support groups where I could communicate with other BT caregivers. I have provided links on the online page for communication online. Mike preferred not to join a support group. When he had a hard time sleeping at night, I was able to encourage him to use a journal to communicate about how he was feeling or to write about what he`was thinking or worried about at that time.
 
Family/Friends: Family and friends want to help and know what is going on so it is important to keep them updated. Early on in Mike's diagnosis I used to send out a mass email to family and friends after each appointment. We would first always call parents and siblings though as we were leaving the hospital. Sometimes this was hard to do. Mike wasn't always up to make the phone calls. Sometimes I wasn't always up to make the calls either. Some days we would be in the hospital jam-packing as many appointments into one day as we could. Sometimes the doctors were late and we had to wait...sometimes we were late. Thank goodness for modern technology so we could send a quick text message out to let everyone know the status of where we were in our venture. The last thing though Mike wanted to do when we did leave the hospital was make phone calls and repeat the information over and over again and even to hear me say it over and over again sitting next to him had to be annoying. Even when it was good news, we sometimes found the phone calls to be burdensome (as I mentioned in a prior story...we did have a celebratory dinner to get to!). What I would suggest is calling one person and make arrangements for that person to be your point person. Ask them to write down everything you say (remember the medical jargon will be tricky) and then ask them to make the phone calls to the immediate family members for you. The other suggestion I have is to create a blog. Mike and I did this later in his diagnosis and it was a big help in communicating with family and friends. I wish we had done it sooner...it was fun too! We added music and pictures to our blog and family and friends could post encouraging comments for Mike and I to read. For more info about creating a blog check out the online page!
 
Doctors: It is important to be able to communicate openly with your doctors and feel comfortable with all of them! If you do not feel a connection or if you are uncomfortable with a particular doctor, you can let the hospital know and request a new doctor.
 

 
         
 

 
Please note the Michael G. Belz Foundation does not provide medical advice and the resources provided are for informational purposes only. 
 
 
Michael G. Belz Foundation |   P.O. Box 347118  | Parma, Ohio 44134