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Posts with tag portal

Thought for the Day: I'm too young for this

There's this guy. His name is Matthew Zachary. He's a cancer survivor, a motivational speaker, a concert pianist, and the founder of a resource portal for young adults surviving cancer.

Steps for Living, Inc. -- also known as I'm too young for this -- was created by Zachary because he wants us all to know there are awesome cancer support services out there for adolescents and young adults. He means really awesome opportunities -- like spa retreats, online forums and blogs, social networking, camping excursions, fertility education, peer counseling, financial scholarships, and more.

You may be too young for cancer, but you are not alone, says Zachary whose mantra is Get Busy Living. And this is exactly what he is doing, despite challenges and setbacks in his own cancer recovery.

Think about this, an e-mail written by Zachary for those near and dear to his heart:

I am writing to share that I have suddenly gone deaf in my left ear. The condition is called Sudden Sensory Neural Hearing Loss.

After consulting with the country's best hearing experts as well as my oncologist, it has been determined that this is unequivocally a latent, long-term side effect of my post-operative cancer treatments from eleven years ago. Evidently, the excessive radiation dosages to the left hemisphere of my brain have caused irreparable neurological damage to my cochlea, which has ceased functioning.

There may be options (cochlear implants) but I will not know more for several weeks. As you can imagine, this is a devastating blow to my personal life and music career, especially since I remember fighting so hard to regain dexterity and muscle control in my left hand when it ceased functioning prior to my initial diagnosis in 1995.

That said, it has only reinvigorated me to stay the course and continue to advocate on behalf of the more than 500,000 young adults living with, through and beyond cancer each and every year. Now more than ever, I stress the importance of recognizing that remission is not a cure and that public awareness and adequate funding for adolescent and young adult cancer survivorship programming is tantamount to that of cancer research.

This is what it means to be a cancer survivor.

To read more about Zachary's powerful journey, click here for an unbelievably moving essay -- titled The Cost Of Living: No Cure For Cancer -- written by this unbelievably grounded guy.

Careplace: Unique online support

What can I do at Careplace?

At Careplace you can connect with others who's lives are like yours. Discuss treatments in online forums, create personal webpages, show support with virtual hugs, send private messages, create your own photo albums, groups and online journals.

  • Join or start a group - Groups are places that people can organize to discuss common interests. If you take a certain medication and want to discuss your progress or side effects, you can share with other group members who take this medication. You can also create groups about fishing or baseball, anything goes!
  • Join a discussion - Forums are where people come together to support one another, ask questions and share news or experiences.
  • Send a private message - Sending private messages is a great way to get to know others better, share a friendly greeting or ask them for more information about something with which they have some experience.
  • Send someone a hug - Sending hugs are an easy way to show someone you care and remind them they are not alone.

Careplace is a knowledge portal that isn't bogged down with medical jargon and words you don't understand. The pages have lists of personal experiences people have had with medications,treatments, doctors and hospitals.

New Spanish language breast cancer web resource

University of Wisconsin-Madison Center of Excellence in Cancer Communications Research has launched a comprehensive new website for Spanish-speaking breast cancer patients and their families. The new Spanish-language site, called Conviviendo con el Cancer de Seno, is a cultural and linguistic translation of an existing online resource called Living with Breast Cancer.

"To the best of our knowledge, this new site is the most comprehensive and culturally relevant resource on the Web for Latinas with breast cancer," says Susana Torres-Corona, project manager. "The site offers an extensive database of original content, and it also serves as an information clearinghouse linking directly to other high-quality educational materials in Spanish for Latinas created by trusted sources such as the National Cancer Institute, the American Cancer Society and the Susan G. Komen Breast Cancer Foundation."

First, I am embarrassed to admit that I cannot speak Spanish. Second, I feel odd in posting this in English. After all, the information about a resource for Spanish-speaking breast cancer patients seems like it would be far more effective in reaching its target audience if it was written in Spanish. But there you go -- here it is -- if you speak English and know of a breast cancer survivor who speaks Spanish, let them know about this new web resource.

Update: If you will check the comments following this post you will find the Spanish language version of this information -- and an explanation of how this information is being distributed to the Spanish-speaking community. Many thanks! to Bret Shaw.

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