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E-Patient Dave - good read

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Robin Martinez, royalty/moderator at the Kidney-Onc (ACOR) site, posted the below link published by the British Medical Journal. I recall e-patient Dave being one of the internet bright spots when John was first diagnosed, and I thought it might be worthwhile to post here for those who are unfamiliar with e-patient Dave. His insight might prove beneficial, particularly to Board newcomers. Dave is a Kidney-Onc alumni and pays tribute to the ACOR group, something he has regularly done in articles and appearances that I have read and seen.

 

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Yes, Alice, it is indeed.  It highlights the importance of sites like KIDNEY_ONC (which Dave thinks may have saved his life) and our CSN, by implication.

[Be prepared for your latinist lawyer spouse to upbraid you - Dave is an alumnus - alumni is the plural!]

Have you read the latest Chronicle?  John will approve of Chris's (and doubtless also Dena's) criterion of a real recovery - being back to playing golf!!

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Oops - my bad Tex!

I did read Chris Battle's latest post on his blog. How heartwarming (though a bit sadistic) Smile! For those of  you unfamiliar with Chris Battle, he was on what seemed to be death's door not that long ago. He was talking about burial plots and telling his youngest daughter of his terminal cancer - tough stuff to read. AND THEN came CABO. If interested, here's the link to his latest and much lighter post. He's still not out of the woods but such a major improvement. . . 

http://kidneycancerchronicles.com/cabo-a-vacation-destination-for-side-effects/

nyisles - that's what we're talking about! A step in the right direction. . .

nyisles's picture
nyisles
Posts: 26
Joined: Mar 2013

Reading that story (and others like it on this board) is helping cope with this disease and gives me hope that I may actually have some future years ahead of me. 

donna_lee's picture
donna_lee
Posts: 415
Joined: Feb 2009

I printed out the writings of Dave to read last night and came to the part about "Doc Tom." Tom was a friend and schoolmate of mine from 6th thru HS graduation.  Had many classes together as we were both college bound-biology, chemistry, organic chem, physics, and others. He had a BA from Reed College, a Master's in creative writing from San Francisco State Un., and his MD from Yale.  Great guy.  Regretfully, he passed away on 4/14/06 after undergoing many years of treatments for multiple myeloma.

The picture in the local paper for his obit reminded me of Robin Williams playing Patch Adams in the movie.  Tom really was a leader in his field.  20 years ago he had begun a magazine to empower the patient into a more active roll in personal care and responsibility.  

Because his widowed mom (also a mover and shaker in this community) still lived here and taugh Yoga into her 80's, Tom came back for class reunions when he could.  We talked at the 40th and I got an autographed copy of his book, "First, Do No Harm", a physician/pharmacy death, mystery novel.

And concerning Dave, I fully agree with what he wrote, which is a pretty accurate summary of my experience.  The only difference was that I had good health insurance.

We are living with cancer, even though we may not even have been diagnosed, yet.

donna_lee

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Wow - that is full circle Donna. If Doc Tom were here, he would be proud of your advocacy of his vision. You definitely are representative of the "online patient-helper" referred to in the article.

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