Question: if you have a health condition can the Internet help?
Answer: Yes. Virtual friendships and the right Internet information can save lives.
And there is often a domino effect in life: one thing leads to another.
In 2002 my husband was diagnosed with a chronic form of leukemia. The initial information I read about Chronic Lymphocytic Leukemia was in my Medical Surgical textbook copyright 1990—patients die within five years. I panicked. Then I went to the net which was current—and there I found information indicating longer life spans… Okay–deep breath, and another and another.
We got a referral for an oncologist and made an appointment. He took our case, giving us good advice and setting up a schedule for routine blood tests. CLL is not a cancer that you treat immediately. But we needed to settle into this new life and FIGHT BACK.
ACOR and CLL Topics
A week later my sister-in-law, an RN, sent me the magazine, Cure. It contained an article about CLL and at the very bottom of the piece was a link to ACOR, the association of cancer online resources. Amazing. With ACOR I could access people through email–other CLLers from all over the world. How does it work? We ask questions and receive answers and targeted help from each other, but also from a research scientist and doctors who provide help. CLL is a complicated disease, but there is always someone ready and willing to either inform a newbie or provide the latest information on medications and treatments. And all of this happened within a few weeks of the diagnosis. If you are reading this and have cancer, check out ACOR, //www.acor.org/
Through the ACOR list we found CLL Topics, a website that provided scientific and researched information about the etiology and treatment of this leukemia. I emailed the owner with a question, not expecting a personal answer. Not only did she respond but also gave me her phone number and encouraged me to call with my concerns. Her husband had CLL and she was dedicating her skills (she is a research chemist) and knowledge to help others while raising money for clinical trials for anyone with CLL. Her work had led her to important connections with CLL specialists at major cancer centers, and as a result she now attended annual meetings for ASH, the American Society of Hematology. In just a few weeks we had found a comforting parallel universe to help us deal with this disease. And all because of the net!
CAUTION: Research and Diplomacy
Some say a little knowledge can be a dangerous thing. No. Not if you use it correctly. We researched and read and double checked and read again. When the disease progressed, we brought some of our ideas for treatment to our oncologist. This produced an emotional bump in our journey. His nurse suggested we find another physician! We did work out our differences. And that was seven years ago. Today, physicians are more accustomed to clients bringing Internet research to a consultation. Regardless, keep this in mind: a study in the Annals of Family Medicine found that more patients worry about a breakdown in communication with their physicians than they do technical errors. The physician author concluded that a therapeutic relationship between physician and patient better insures compliancy.
So a word of caution: YES, do your research, bring it to your consults, but always honor the doctor’s knowledge. Diplomacy should insure you stay on good terms. Of course if your relationship fails, get another doctor. Doctors work for you and you want someone there when you truly need help.
Internet Friends Save Lives
Now it’s ten years since my husband’s diagnosis and he is out of remission. The fight is bigger than ever. But because the owner of CLL Topics has become a medical advocate and a true friend, my husband is again winning the battle. Her influence helped us make contact with specialists who immediately offered treatments that could help.
Internet friends from ACOR and the yahoo CLL/SLL list write us back asap, providing information about side effects and their personal treatment results. All of this means we are not alone–we are fortunate and blessed, receiving help from folks in Australia, Ohio, Virginia, and Missouri etc. Twitter friends provide support too, inquiring about how things are going. One blogger friend printed a guest post for me that truly lifted my spirits.
Of course all along we have had our family and friends to support us. They send good wishes, love and prayers on a daily basis or bring over meals and provide rides to the airport and the store. Life would be so much more difficult without them.
But in the very beginning, we knew nothing about CLL. It was a diagnosis, leukemia!– a scary diagnosis. The good leukemia to have, some doctors say. No!. No leukemia is good to have.