Some things to consider when you are looking for volunteer opportunities:
Volunteer opportunities are available for a variety of different needs. The following are areas we currently need volunteers:
Provide-a-Ride for Hope Program: Persons who are interested in driving patients to doctor appointments, shopping, pharmacy and a variety of different places that some of our patients cannot drive themselves. Volunteers must be at least 18 years of age, have a valid drivers license, submit to a background check, and provide a copy of your current driving record and proof of automobile insurance.
Graphic Arts Design: Designers are needed to work on a variety of different design projects.
Office Help: Help is always needed in the office to perform a variety of clerical duties.
Counselors: Licensed counselors with experience working with families who have a variety of different needs in addition to having a family members with a life threatening illness. Volunteers must submit to a background check and sign a patient confidentiality form and a Liability Waiver.
Patient Advocates: Persons who have personal knowledge and experience in coping and living with a life threatening illness and have a passion to help others going through the same are need for our Patient Advocacy Institute. Patient Advocates will undergo a 8 week training course and will be required to attend quarterly meetings with other patient advocates to keep up to date on patient issues and OKBTF programs and services.
Advocacy Events: For a list of upcoming events, click here. Volunteers are always needed to work OKBTF events. Requirements for the events varies. If you are interested in working a specific event, please contact the OKBTF office for further information.
For more information regarding any of these volunteer opportunities, please contact the OKBTF office at 405.843-4673.
With so much information at our fingertips these days with the internet, even a well educated and self empowered patient can get caught up in what I call “Google syndrome”. Google syndrome can be summed up by this defnition “a well intentioned effort to educate one self regarding health problems, prognosis, symptoms and potential outcomes through the search engine Google to the point where everything you read you believe and take to heart as being the truth because you found the information through Google”.
Okay, I made up that definition and the term Google syndrome, but I think it illustrates a point I am trying to make. Not everything you read in the press, magazines, or even on the internet can be taken as being the God’s honest truth about anything. That is why many organizations such as the Oklahoma Brain Tumor Foundation, American Cancer Society and other health advocacy organizations will typically provide you a list of suggested websites you can visit to find good, reliable information regarding your health.
Please don’t listen to just any Tom, Dick or Harry regarding your health. Be selective and use only credible sites that are known to provide reliable and accurate information. There are many good sites avialable for you to use and there are many sites that aren’t. You must be selective in what you allow yourself to read and who you allow to influence your health care decisions.
We all have that small still inner voice that speaks to us when things are wrong. We hear it and feel it but we don’t always listen to it. Sometimes we put it off as we are imagining things, worrying or being a hypochondriac. The fact is that voice is our body and spirits way of warning us and all we have to do is listen. You can call it mothers intuition or whatever you want but we have all experienced it at one time or another and didn’t listen to it and thought later “I should have gone with my gut feeling”.
When my son Cade was diagnosed with a brain tumor he was only 12 weeks old, fortunately we had 9 good months with Cade before the tumor began to spread. It was right before Cade’s first birthday and his tumor had been stable for 9 months. We had the monthly MRI performed. I always required the doctor to show me the MRI scans and explain them to me. So I had seen the previous scans and knew very well what the tumor had looked like to this point. The MRI report said that the tumor was still stable and had not changed. But when you looked at the tumor on the MRI film it looked different than it had previously. Previous MRI’s the tumor had been kinda fuzzy around the edges and an oblong shape. But this time the tumor was clearly defined around the edges and perfectly round. It looked like someone had inserted a green pea into his brain it was so perfectly round and defined. I questioned the doctor about the difference in appearance and how could he say the tumor had not changed when clearly it had changed. The answer I received was the size of the tumor had not changed it had not gotten any larger. I still questioned the doctor and we went back and forth for 2 weeks until finally they convinced me that nothing was wrong and not to worry. Two weeks later my sonCade began having some symptoms and another MRI was performed but this time the tumor had tripled in size and spread down his spine.
Now my gut/spirit had told me that something was not right with that scan. I am not a radiologist or a doctor but I knew something was wrong. And had I listened to my gut and required the doctors to explore this further with different and more advanced diagnostic testing maybe we could have identified the changes in cell structure within the tumor and maybe we could have prevented it from spreading. MAYBE, MAYBE, MAYBE, who knows?
The lesson I learned from this was to always listen to my gut instincts, my spirit person, my mother’s intuition. Who knows your child better than you? Who knows your body better than you? Who knows your husband or wife better than you? The answer is no one knows you better than you, and that is something years of medical training and experience cannot give your doctor.
- If you have several health concerns to discuss, let the receptionist know ahead of time when booking the appointment so they can allow more time in the doctor’s schedule for you.
- Be sure to tell your doctor about any current and past health care issues or concerns. It’s important to share any information you can, even if you’re embarrassed.
- Create a “health journal” for yourself on paper or in a notebook, and bring it to your appointments. Keep track of problems you are having, the time of day they occur, did you eat before and what did you eat, etc. This will help your doctor when making a diagnosis.
- Bring any medicines you are taking with you or create a list of all your medicines. Include information about when and how often you take the medicine and the strength. If you are experiencing side effects from your medicine(s), especially if it makes you feel sick or if you think you may be allergic to it. Be sure to include any vitamins or supplements you take.
- If you are being seen for a life threatening illness it is always recommended that you never attend an appointment alone. You should always take a family member or friend along with you.
- Take notes at your appointment or have your family member/friend take notes for you.
- If you have to go alone to an appointment, take a tape recorder to record the conversation with your doctor so you can listen to it as many times as necessary for instructions and information.
- If you are having problems understanding your doctor, let them know that you need further clarification. Tell them you don’t understand what they are talking about.
- Never ever leave an appointment feeling lost and not understanding what was said and what the next steps are in your health care.
We are definitely in a time of change. I have a new found sense of hope for our future, our children’s future. I feel like for the first time I can exhale….breathe. Hope is not sinking into a pit of despair any longer….we have been thrown a life vest and HOPE FLOATS!!!!
Maybe I am thinking a little to naively, but I really feel as though we have definitely taken a step in the right direction for cancer patients, health care…all of the above.I am working on developing a new Patient’s Bill of Rights to send to our new President Barack Obama. I would like your input, comments, thoughts, and suggestions. Please get involved and let’s help HOPE FLOAT! Let’s give our new President the tools he needs to make sure the health care crisis is rectified, that patient centered care is a priority, a right and no longer a privilege for the financially wealthy.
Send your thoughts and let’s get started! YES WE CAN!!!