Patient Conferences and Support Groups
Before I had cancer, I had been mostly uninvolved with the medical field, patient issues, or any sort of healthcare education. My family has a history of heart disease. That is what I thought I would die of and I may yet. I generally keep myself healthy, eating right and exercising. The main reason was to prevent heart issues. Instead I have neuroendocrine cancer.
I had never heard of patient conferences before I was diagnosed with cancer in 2010. Since then, I have been to three such events. Usually these are either a half or full day, with both patients and caregivers as the primary audience and doctors, nurses, and nutritionists as speakers. All three conferences have been quite informative. I was able to meet some of the more experienced carcinoid doctors to discuss the disease and treatment options, though sometimes the material is a bit too technical for me. I do not have much medical aptitude but I am learning the terminology. I also enjoy meeting other patients at these forums. I like discussing their treatments and issues in person, rather than over the internet.
On June 8th, I will be going to a patient conference in Randolph, MA that is being sponsored by the New England Carcinoid Connection (http://www.carcinoid-newengland.org). This is a little out of the way for me, being from NYC. I look forward to seeing the doctors from Dana Farber Cancer Institute in case my situation with the NYC doctors does not work out. It’s also been almost a year since I’ve been to such an event, so I am both hoping to learn something new and to meet other patients.
I have always heard about cancer support groups. My general feeling is that I would not like it. I assume it might be like a "pity party" where everyone talks about their pain and suffering. My personality does not fit well with this type mentality - I tend to have an optimistic attitude.
I am not aware of any active support groups in NYC. I'm not sure why. In a city of 8 million people, one would think that there would be plenty of carcinoid patients who might want to form a group. Emily Zuckerberg, spouse of a carcinoid patient, is starting a support group in the Bronx. I am planning on attending the first meeting which will be on Sunday June 10th at 1:00 pm at Riverdale Neighborhood House, 5521 Mosholu Avenue, Bronx, NY 10471. If interested in attending, please email Emily at email@example.com. I am hoping it will be a valuable experience and that I can talk to people who may be using the same doctors and hospitals or can give me advice on alternatives.
So, next week will be a double dose on carcinoid events for me. I am hoping to learn something and to dispel some myths in my head about support groups. If you will be at either event, please introduce yourself - I would love to meet you in person.