The Leukemia & Lymphoma Society Blog
7 Posts tagged with the lymphoma tag
Guest Post from Mike Hamel, Lymphoma Patient, Cancer Blogger and Author
Posted by Samantha Mills Aug 18, 2008I really enjoy reading (and writing!) blogs. A blog provides a less formal environment to share information than other forms of writing, and it enables regular people to have their voice be heard by potentially anyone and everyone. I feel pretty privileged to be able to read people’s personal cancer experiences through their blogs, and was delighted to be introduced to Mike Hamel’s blog, Cells Behaving Badly.
Mike was diagnosed with lymphoma in early July of this year, and is taking the time to document his experience. He writes regularly and with a wonderful sense of humor that makes the experience sound less daunting.
Mike has graciously given us permission to share one of his blog posts with you, so without further ado, read on!
A Client, Not a Patient
Mike Hamel, client, and Nurse Sharon
I won’t be able to change the nomenclature of the medical profession but I refer to myself as a client, not a patient. By definition, a patient is “One who receives medical attention or treatment.” The archaic meaning was “One who suffers,” from the Latin verb meaning “to endure.” A client on the other hand is “The party for which professional services are rendered.”
Catch the nuance? A patient is the object of medical care, a client is the subject of medical services. In language as in life, an object is passive, a subject is active.
A patient complies with the experts. A client consults the experts, then follows what seems the best advice.
A patient might complain but would never contradict an authority. A client will ask questions and weigh alternatives before deciding.
A patient goes where sent and doesn’t change doctors or clinics. A client tries to find the best physicians and facilities realistically available.
A patient asks “What?” A client asks “Why?”
Being a client takes a lot more work. I have to educate myself about my condition and treatment options. It’s a daunting but doable task thanks to the Internet. There are plenty of reputable sites with reliable information the average person can understand. (See the LYMPHOMA INFO box in my sidebar for a start.)
Oncologists know a shipload more about lymphoma than do its sufferers, but they don’t know everything. It’s impossible to keep up with the ocean of new information. A dialogue with a well-informed client could suggest new possibilities to a thoughtful physician.
When I see Dr. Kurbegov in two weeks, I’ll ask if radioimmunotherapy is an option for my type of lymphoma based on an article I read in the New York Times. I’ll ask about any clinical trials for which I might be a candidate, especially those sponsored by the MD Anderson Cancer Center where Dr. Kurbegov was a Chief Fellow.
I’m not trying to play doctor or impress anyone with my research skills. I’m just trying to understand my cancer and to be proactive in eradicating it. After all, it’s my life.
Learn more about Mike by visiting his blog. It’s possible you may already be acquainted with his books which include the Matterhorn the Brave series, as well as The Entrepreneur’s Creed.
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Consider these "client" resources as you manage your diagnosis and treatment:
The following is from our Chief Medical Officer, Barton Kamen, M.D., Ph.D.
Cancer … What a frightening word for anyone to hear, especially a parent! There are about 10,000 new cases of cancer in children under age 15 in the United States each year.. This is less then 1% of all cancers diagnosed annually in our country. Even so, that is not a consolation for you as a parent because no child is a statistic. In the more than 30 years that I have been a pediatric oncologist great progress has been made in treating children. In fact, the majority of children can be cured and today some treatment plans are designed to minimize treatment, hopefully without decreasing the cure rate. The goal is to eliminate or at least minimize the long term or late effects of treatment.
When we say cancer, we really mean CANCERS─plural. Unlike adults, in whom the common cancers are of breast, colon, lung and prostate, childhood cancers are predominantly two related diseases, leukemia and lymphoma, followed by brain tumors. In fact approximately 40% of all pediatric cancers are blood and related diseases, and about 20% are brain tumors.
Much of the progress in treating children with cancer is at least in part due to the fact that the pediatric oncology specialists around the world have worked together in cooperative groups so that large clinical trials could be done. Since, fortunately, the total number of patients is relatively small, this cooperation has allowed information about the diseases and the treatments to be collected and then used to formulate better treatment plans.
The majority of pediatric patients in this country are treated in centers that have established teams of professionals: physicians (including hematologists, oncologists, radiotherapists and surgeons), nurses, social workers, psychologists, child life specialists and teachers. This is to insure the best care for the child and family, which means that we are not simply treating a disease. I have always made a point with students and residents that we treat people not diseases, and in our case, we treat children. That means we also have to provide support and guidance to siblings and parents.
Yes, cancer is a horrific, scary word to hear, but I am glad it is 2008 and not decades earlier, when I started. No matter what type of cancer you or your child have─whether it is a disease with an outstanding record of successful treatment, or one of the more difficult to treat types of cancer─I suggest that you have your treatment at a center in which there is a whole team available to assist you on the journey. And that this team is associated with an even larger team. For difficult to treat cancers, there is often a clinical trial that is an option for you or your child. My advice to any parent, even though I do not like to be called a healthcare provider and do not consider my patients to be customers, is: You should be your child’s best advocate and as a consumer, ask questions and get as much information as you want. There is no such question as a bad question. And usually, for most questions about serious illness, your imagination about what is happening is often worse then the reality.
Blood cancer resources for Spanish (Español) and French (Français) populations
Posted by Samantha Mills Jun 5, 2008We have many resources in English, but in case you didn’t know we have resources that can be of help to people whose native language might not be English.
Free Materials
Available in Spanish (Español) and French (Français)
Free materials are available in Spanish (Español) - you can download a PDF or order a printed copy - and French (Français), but you can download a PDF only. When you are on the www.LLS.org website look in the left-hand column and click on Patient Services, then Free Materials, then you will see Spanish Publications (Publicaciones españolas) and French Publications (Editions françaises).
Financial Assistance
Available in Spanish (Español)
Need financial assistance? Spanish-language speakers (las personas que hablan español) can download our Patient Financial Aid application in Spanish (Solicitud de ayuda económica para pacientes) as a PDF. There is also a handy step-by-step guide in Spanish (Cómo solicitar la inscripción en el programa de ayuda económica para pacientes) to help you fill out the application.
Free Newsletters
Available in Spanish (Español)
Visit the following pages in our National Education Programs section for access to our downloadable Spanish newsletters (boletines españoles) available as PDFs.
Lymphoma News page for NHL Descubrimiento Horizontes
CML News Links page for Enlaces con información sobre LMC
Myeloma News page for Noticias sobre el mieloma
Can’t find what you need? Let us know here by leaving a comment or by contacting our Information Resource Center by calling (800) 955-4572 or filling out our online form.
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