“Are you a patient or caregiver? We need your help!”

I got this request from a healtheo360  email:

“Are you a patient or caregiver?  We need your help!

We have partnered with a team of medical artists and designers who are currently developing patient and caregiver educational materials.

We are looking to receive feedback on the draft materials that we have developed.  With your feedback, we will be able to update and improve the materials so that they better meet the needs of patients and caregivers, just like you.

We need your help and expertise to make these educational materials better, so we created two simple questionnaires to gather your feedback for patients living with lung cancer or melanoma and their caregivers.

The questionnaires will take about 10 minutes to complete.  All responses will be kept confidential.”

If you are interested, here’s the link: https://www.surveymonkey.com/r/9JSRRWH

If you want to know more about healtheo360, here’s a link to their website: http://www.healtheo360.com/

John

PS – And here’s a blog a wrote about healtheo360 previously: http://johnstumor.blogspot.com/2013/05/healtheo360com-brain-cancer-stories.html

 

"Top 10 Questions Brain Tumor Patients Need to Ask Their Doctor"

Just learned that you have a brain tumor? Are you in denial? Have no idea what to do first or where to start?

Here’s a helpful video from the Chris Elliott Fund - http://chriselliottfund.org/ - about the “Top 10 Questions Brain Tumor Patients Need to Ask Their Doctor” (scroll down the page to the second video).

The video gives newly worried victims, caregivers and friends/relatives a nicely thought-out “to do” list that will channel your energy.

The 2013 ABTA "Patient & Family Conference: A Focus on Caregiving

This is a great event. I attended last year and a) learned a lot from the great presentations, b) met a bunch of courageous brain tumor victims, and c) felt like the medical community attending was incredibly supportive.

According to the email I just received, “Experts from around the country will discuss quality of life issues affecting brain tumor patients and their caregivers. Attendees will also have the opportunity to meet with ABTA-funded researchers, who will present their findings and discuss current research trends."

Conference topics include:

• The role of patients in research

• Talking with your health care team

• Symptom management

• Nutrition and wellness

• Physical therapy and exercise

• Finances, insurance and advance care planning

Here’s a link to the website: http://hope.abta.org/site/PageServer?pagename=2013_Patient_Family_Conference_Program

Being Cancer Network: An Important Website

Feel like nobody else has your kind (Colo-rectal? Kidney?  Hodgkins?) of cancer? Want to read about ther victims grappling with the same problems you’re wrestling with? Go to the Being Cancer Network - http://beingcancer.net/ - and read one of the 1,500 or so blogs sorted by the following categories:

Brain Cancer            Liver – Lung

Breast Cancer          Lymphoma

Colo-Rectal               Miscellaneous

Grief Blogs                Multiple Myeloma

Gynecologic              Neuroblastoma

Head & Neck            Prostate

Hodgkin’s                 Sarcomas

Kidney Cancer         Skin – Thyroid

Leukemia

Personally, I tend to focus on the brain tumor blogs. Some blogs are well-written. Some are heart-felt, and many are a combination of the two.  

In addition to the 1500_ blogs there are also:  

• Guest posts by other cancer survivors
• Reviews of cancer books and movies
• Essays on living with cancer
• Honor Roll for Excellence in Cancer Writing

 I have this site bookmarked…and if you give it a look, I think you will bookmark it too.