Posted By: Donna Sharing stories and info - 04-27-2002 04:14 PM
Hello.........I know that each and everyone of us diagnosed with Oral cancer has done some sort of research on what to expect with both surgery and treatments. Most of the information is written in medical form with the exception of the OCF message board. During my recovery from cancer and treatments I began searching bookstore and the Internet for personal cancer stories. I wanted to know how other folks coped with their cancer diagnoses, their surgeries and treatments, and if they lost the use of an organ or a limb how they recovered both mentally and physically. At this point in my recovery I was having a difficult time emotionally and I thought by reading other peoples stories I might gain some insight. Plus, I was tired of reading all the medical jargon--I wanted and needed first hand experiences from folks who at some point during the cancer journey were experiencing the same physical and emotional challenges that I was. (that is why this message board is so wonderful!!)

So, like Oprah, I thought maybe the members of this OCF message board could start their own little book club. We could list books we've enjoyed, newspaper articles, upcoming TV programs that have to do with cancer, like the Bill Moyers series on PBS about chronic illness and death and dying.

I'll start by sharing one of my favorite books about TONGUE cancer---don't find many tongue cancer stories lining the shelfs at the public library--LOL. I found this one on the Internet, and I absolutely loved the book. The name of the book: Because Cowards Get Cancer Too; A Hyporchondriac Confronts His Nemesis by John Diamond. I liked the book because Mr. Diamond is a wonderful writer and because it was/is the only book I could ever find about tongue cancer specifically. Mr. Diamond is a British bloke with a wonderful sense of humor. His story reflects many of our own--- first there was a misdiagnoses, then trouble locating the primary tumor, the doctors never do find the primary tumor, Mr. Diamond does by "listening to his body," then he takes the reader through his surgery, chemo and Radiation. He tells his story with courage, dignity, and a wonderful sense of humor that he never seems to lose. The book is a very good read! Anyone else out there with a good book, newspaper/magazine article that was particulary interesting or emotionally moving? I, for one, would love to hear about it. Sincerely, Donna
Posted By: Ilene Re: Sharing stories and info - 04-28-2002 02:41 AM
You beat me to it - Because Cowards Get Cancer Too would also be my top recommendation. I first head of John Diamond unfortunately reading his obituary. I had just returned from surgery at the Mayo clinic and was due for radiation soon. The book was a remarkable resource for me. My most recent check of Amazon.com shows that it is out of print but there are some copies available. You can also see his articles from his weekly London Times column. Much of material in the book was taken from the articles. The articles also cover the time period after the book was published. The site is
www.times-archive.co.uk/JohnDiamond/index2.html
Posted By: Donna Re: Sharing stories and info - 04-28-2002 09:50 AM
IIene.............THANK YOU, thank you, thank you for the link to John Diamond articles in the London Times. I tried several times after reading the book to find links...articles he had written previous to his death...anything I could find and came up with nothing! Sounds like you enjoyed the book as much as I did. Now I gotta go "link up" and read the rest. Thanks again, IIrene! Sincerely, Donna
Posted By: Brian Hill Re: Sharing stories and info - 04-28-2002 08:46 PM
Donna....this was a great idea! Thank you for suggesting it.

I was introduced to John D by a friend who works for Zila Pharmaceuticals. Zila manufactures a cancer detection dye called Oratest, which is sold in England and other countries (still being reviewed by the FDA here). I had two conversations with him before he passed away, he was an extraordinarily funny guy, actually witty might be a better word. We discussed foundations, before OCF became a reality, and the possibility of having one on each side of the pond to get the information out. I think that his book is wonderful and a great read for anyone in our situation. I am less fond of the British medical system, as I believe that John was poorly diagnosed early on, (this is clear in his book, though he doesn
Posted By: Donna Re: Sharing stories and info - 04-28-2002 11:28 PM
Brian.............You met John Diamond?! I imagined him to be one funny guy given the way he writes. There were more than a few times while reading his book and London Times articles when I laughed right out loud. I agree about the Brittish Health Care System and realize how lucky we are here in the USA. Imagine what would it would have been like for him without the additional insurance he did carry---BUPA, I think it was called. Had he had the total glossectomy when you met him? Was he reasonably healthy? Did you share a shot of Vodka? LOL I had no idea that his wife was Nigella, as in the cooking show "Nigella Bites." I also had no idea that he lived as long as he did because I read the book shortly after it came out.

Thanks for sharing a book, and it is a book I have not read either. When I order it from Amazon, I'll make sure OCF gets the donation. Thanks for reminding me. Sincerely, Donna
Posted By: Brian Hill Re: Sharing stories and info - 04-28-2002 11:44 PM
I didn't have the privilege of actually meeting John, just talking with him by phone. After agreeing to share ideas about what it would take to get the word out, his situation turned negative, and before I had a chance to communicate with him again, he was gone. I wasn't close to him, so I do not know if he knew what was immanent in his future. And you are right about our health care system, though it obviously still has flaws. There are still too few looking for our disease, and too many late diagnoses. It doesn
Posted By: brenda Re: Sharing stories and info - 04-29-2002 08:20 PM
Another good book is by Lance Armstrong, It's Not About the Bike. It isn't about oral cancer but it is a very inspirational book about his fight against cancer. The book shows the importance of getting other opinions about your cancer and how attitude and determination will take you far.
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