Journal site now live - PLEASE JOIN and share

donfoo
donfoo Member Posts: 1,771 Member
edited March 2013 in Head and Neck Cancer #1

Hello fellow CSNers,

I built and personal journal website. I did not care for the ones like caringbridge, more due their business model more than anything, and having skills and interest decided to build my own, specifically since I have full control over the look and feel, the content, and the features. 

The site is ready and i am excited to extend an invitation to all CSN members and visitors. You can join by going to the site and create a user account that triggers me to review the request and I will approve you. The site is by invitation only so only people who I know are priviledged to participate in my journey.

That said, I made the decision to "out" myself at both professional and personal risk to share all the details of my journey. I sent several hundred emails out and the only ones I decided to hold back were very new clients and those I am currently in discussions and negotiations for new business, just I decided I could not afford to lose revenue at a time when I need it most to scrape by over the next number of months.

It has become my mission to use my experience with oral cancer to inform, educate, and motivate as many people as I can to get their kids vacinnated for HPV and also to get everyone to ask/demand their dentist do an oral cavity looksee for anything unusal as a screen for potential signs of cancer. In my case, I know it would have at some point been seen as the BOT primary ulcerated and was clearly visible.

I can report that my own PSA campaign is working. Several local Moms have written me and are now getting their kids the vaccine. Get this one was advised by their pediatrician to NOT get them vaccinated. One was still not aware of the problem, Another made the decision to get ahead and get it done. This along represents a number of lives which may be spared the path we are now on.

Currently, the site is just me writing and no feedback except in one specific area. I do not have any comment feature enabled on my posts but gettting to feel it may be time to allow others to express and share their thoughts too. Initially, I was sensitive to those who may want to remain lurkers which is fine but I get many comments via email that would be of help to others.

It would be my heartfelt pleasure for you, my new virtual freinds and close comrades in arms to join and become part of my own support network. 

http://beatdown.cognacom.com

click on link in left bar to create account.

PLEASE PLEASE share this link with as many friends that you know so we can make more people understand the growing epidemic of HPV oral cancer and marshal them into action for their own benefit and those of others. 

Thanks so much,

Don

Comments

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #2
    Been there...

    Dfoo....

    I've been following your journey from the beginning. What's this imaging program you mentioned in your Day 46 entry and how were you able to access the scan images? 

    "T"

     

  • Joanielo
    Joanielo Member Posts: 55
    #3
    Journal

    Don,

    I read your journal dailey and I really enjoy your writings.  I like your sense of humor tooWink

  • donfoo
    donfoo Member Posts: 1,771 Member
    #4
    fishmanpa said:

    Been there...

    Dfoo....

    I've been following your journey from the beginning. What's this imaging program you mentioned in your Day 46 entry and how were you able to access the scan images? 

    "T"

     

    program is on disk

    Hi T,

    Both the PET-CT disc and the recent CT disc are from two different facilities, each uses a different program to display the images but no matter since the imaging program starts up when the disc is inserted. There are no instructions or guides so you just need to click around a bit to load the image you want to check out and pan and zoom around and such. If I have time in the next couple days, I will record the moving image and make a video of the PET, clearly showing the nasty beast in my neck. Amazing to see it --- just so in your face!

    don

  • donfoo
    donfoo Member Posts: 1,771 Member
    #5
    Joanielo said:

    Journal

    Don,

    I read your journal dailey and I really enjoy your writings.  I like your sense of humor tooWink

    Thanks

    Glad you enjoy the journal. When things are good, more difficult to write something meaningful yet entertaining. Ironically, the tough days make for plenty ofr copy. Thanks Don

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #6
    donfoo said:

    program is on disk

    Hi T,

    Both the PET-CT disc and the recent CT disc are from two different facilities, each uses a different program to display the images but no matter since the imaging program starts up when the disc is inserted. There are no instructions or guides so you just need to click around a bit to load the image you want to check out and pan and zoom around and such. If I have time in the next couple days, I will record the moving image and make a video of the PET, clearly showing the nasty beast in my neck. Amazing to see it --- just so in your face!

    don

    So....

    The imaging program is on the disc itself? If so... cool! I can ask for copies of the scans and get to see the images too. I'm curious to see the CAT scan prior to surgery and the one that that took when they fitten me with the mask after the surgey.

    "T"

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