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- Quinlan Brain Tumor Foundation
- Winter 2013
The Michael Quinlan Brain Tumor Program is the result of the Michael Quinlan Brain Tumor Foundation’s merger with BIAK in 2010. This program is designed especially for those who have been affected by brain tumor, either malignant or benign. The MQBTP provides survivors and families with educational, emotional and even financial services. The Michael Quinlan Brain Tumor Foundation was founded in April 2001 to honor the memory and life of Michael Quinlan, who passed away from an aggressive cancerous brain tumor, called Glioblastoma, or as commonly referred to as GBM. MQBTF became a part of BIAK in October 2010 and continues the same mission that was started in memory of Michael Quinlan. For information about brain tumors or cancers and about support groups and other information, please contact BIAK’s Outreach Director toll free at 1-800-592-1117 or you may reach him by e-mail at email@example.com.
Services provided by the Michael Quinlan Brain Tumor Program:
- Information regarding National Brain Tumor Centers and Organizations
- Free educational materials that a brain tumor specific
- Works with other agencies to provide brain tumor education to survivors, caregivers and healthcare professionals.
- Follow us on Facebook, where we will post links to articles about new treatment innovations and clinical trials.
- Sponsors brain tumor support groups for patients, survivors and caregivers.
- Conducts grief support sessions on either an individual or a group setting
- Offers caregiver support in both individual and in group sessions
- Offers individual, on-line and telephone support
- Assists with financial aid for medically related needs for brain tumor patients/survivors in Kentucky and Southern Indiana
- Provides resources in Kentucky and Indiana for financial assistance
Frequently Asked Questions of the Newly Diagnosed
Why did this happen to me?
If you are asking yourself this question: welcome to the human race. This is a perfectly normal question for anyone to ask and is common whenever someone is facing stress from a negative, life-changing situation. We call this stress, grief and it is the way we heal from events like this. There are many ways people deal with this emotion successfully. Some seek counsel from a psychologist or counselor, while others seek support from their faith or spiritual community. Regardless of your preference, find someone who is willing to listen in a non-judgmental manner and will help you walk through these, and the other emotions that accompany grief.
What will happen to me?
The truth is, not even your doctor can tell you exactly what will happen to you in the long term, or how you'll recover from surgery or other treatment procedures. Everyone is different and outcomes differ depending on the type, size and location of the brain tumor and your general health prior to surgery or treatment. While in the hospital or rehabilitation facility, you should have access to staff that can help you with answers to your questions. The Michael Quinlan Brain Tumor Program and BIAK will be glad to provide you with information regarding any emotional, caregiving, or financial support you may need.
What will happen to my family?
Brain tumors are a family disease, too. They affect families emotionally, financially and will create a change in the family dynamics. Emotionally, families will experience the stress that accompanies major life changes – this is called grief. The most common emotions in grief are: shock, denial, guilt/bargaining, anger, depression and acceptance. These emotions are not wrong and each one will allow the family member cope with the loss that you are experiencing, too. Finding the right supports that will allow each member to deal with their emotions in the most constructive manner will be a great asset. Marriage and Family therapists, or for those so inclined, the support from pastor, priest, rabbi, imam or other spiritual community can also provide assistance in helping families cope.
Families will also face financial challenges as the cost of healthcare and the loss of wages of either the patient or the caregiver adds to the financial burden. BIAK and the Michael Quinlan Brain Tumor Program can provide you with information about resources to help families cope with the change in their financial picture after the person has surgery and undergoes on-going treatment and rehabilitation.
Family systems are both fragile and resilient. Initially, the changes brought about by the diagnosis, surgery and treatment of brain injury may lead to some confusion over roles played by family members and the adjustment of all family members to the realities of the brain tumor or cancer. Fortunately, with a little help and support, families are resilient and most often can successfully cope with the changes that brain tumors or cancer brings to the family. Reaching out is always important for families at this time.
What about finances?
This is always a sensitive and real consideration and fear for patients and families. However, this is not the time to worry about finances. Hospitals work with patients and there are resources available from the Commonwealth of Kentucky to help families with medical expenses. In most cases, it would be advisable to begin to file for Social Security Disability Insurance if applicable. The process is long and payment is dated from the date the claim is filed, so the sooner the better. BIAK can also work to link you up with resources that can help you meet some of your financial needs.
Will I recover and will I be “normal” again?
Again, no one can see far enough into the future to know what your outcome will be and many people notice cognitive, emotional and/or physical changes after surgery and treatment. However, different does not mean worse – it only means different. We are made to adjust to our situation and we can learn how to cope with change and even overcome many of the challenges that we face. You and your family will need the right care, treatment and resources to help you successfully face your challenges and BIAK and the Michael Quinlan Brain Tumor Program will be glad to help you get in touch with the resources that can help you maximize your quality of life after surgery and treatment.
What about Alternative treatments?
In reaching out for hope of a cure, or to relieve symptoms; you may be considering the use of Complimentary or Alternative Medicine (CAM). Complementary and Alternative Medicine is used in nearly one-third (31%) of all cancer patients. These treatments are based upon historical or cultural practices and lack any scientific validation from controlled tests. Nevertheless, CAM can help a patient with side-effects and increase the patient’s comfort level. The medical dictum, “first do no harm” is the key thing to remember. Certainly there is little chance of harm from light-touch or massage therapies; however, it is always a good idea to discuss your plans in using any dietary or homeopathic treatments with a medical professional who knows your health situation as it is important to remember that even natural herbs contain chemicals that will interact with your tumor/cancer and medications. These treatments can complement the treatment you are receiving and provide some relief: just be sure that someone who understands your situation is aware of your plans and can help assure you that you will not harm yourself with these treatments.