World Champion figure skater, Scott Hamilton, was diagnosed with testicular cancer in March of 1997. He underwent months of chemotherapy treatments and surgery, and today, is a cancer survivor. Scott's positive and upbeat attitude, along with the support of friends and family, got him through the difficult times. He has turned his experience with cancer into an opportunity to help others and is now a lifetime spokesperson for the Cleveland Clinic Taussig Cancer Center and the founder of the Scott Hamilton CARES (Cancer Alliance for Research, Education and Survivorship) Initiative. Scott firmly believes that education about the disease and its treatment is the key to overcoming the fear of screening and diagnosis. With this in mind, he has developed an educational website, in conjunction with The Cleveland Clinic doctors and nurses who cared for him during his battle. The website, www.chemocare.com, was launched on December 1, 2002. Scott sat down with OncoLink's Editor-in-Chief, Dr. James Metz, to talk about this project.
ONCOLINK: Thank you for taking time to talk with OncoLink today about your new website, www.chemocare.com, Scott
SCOTT HAMILTON: It's a pleasure to speak with you, thank you for taking time to help us with the launch of the website.
ONCOLINK: When did the web site chemocare.com launch?
SCOTT HAMILTON: It was launched on December 1st, just last night. Did you have a chance to look through it? What did you think?
ONCOLINK: I think it is great. I was going through the whole site, actually, this morning. I was pretty impressed. It has a lot of real good information. It is impressive how you put this all together so quickly.
SCOTT HAMILTON: Well that is good. We are doing this as a public service. We put a request for feedback on the site. We are going to take everyone's feedback and try to figure out how to improve the site and correct any imperfections, like grammar or spelling errors. We want this to be perfect and as good as it can be. We hope to get a lot of feedback, so we made that a part of the web site.
ONCOLINK: We try to do the same thing here at OncoLink, making sure we have complete and accurate information and incorporate feedback from our visitors. There are so many web sites on the internet that are not so great, providing poor or incomplete information, that it is nice to see a really good web site launched.
SCOTT HAMILTON: We really thought that this one was necessary. As you know, there is a lot of information on the Internet. Much of it is in language that very few people can understand. My chemotherapy experience has pushed me to want to make this information available in a way that people can really understand. To get people to understand that this is something that is therapy. It is chemical therapy. It is not always easy, but there are ways of handling the side effects of therapy. We are lucky to have Ortho Biotech as a sponsor of the site. They have done a great job of helping us put this together, and are working hard to help patients deal with treatment related side effects. It helps that people can log on and learn how Procrit can help improve quality of life by keeping your energy level up.
ONCOLINK: Yes, I think that is great. Ortho Biotech has been a big sponsor of ours, actually, for years. They have been really supportive in getting good, unbiased information on line. So I think this is a great extension of what they have been doing online to help patients get accurate information. I think it is wonderful you are working with them; they are a real good company to work with.
SCOTT HAMILTON: That is funny because we were talking last night, the team; it is kind of an interesting team or machine that we have become. We all have our roles, and mine is not technical or medical. It is more or less to raise awareness in people who need that information, and spread the word that www.chemocare.com is a good resource available to them. It is hard to explain exactly all the work that went into the site, how much thought and constant feedback, writing and more feedback and writing, so it has been a huge process. Dr. Bukowski has been looking over everything and sharing it with his colleagues at the Cleveland Clinic to look over everything to make sure that the wording is correct and everything is as it should be. Hopefully, a lot of people will use this web site as a good tool in researching their cancer and treatments, giving them what they need to understand and empower themselves to participate in their own chemotherapy treatment decisions. It is for families too! When I was diagnosed, I would talk about it, tell my friends and family what is going on, and they just wanted to know more. It is hard to get the information you need without it being frightening or intimidating. We want to make this user friendly.
ONCOLINK: Yes, absolutely, I think that is wonderful. I think it is important to bring information in for friends and family, as you said, because lots of them do not know what to do or what is going on.
SCOTT HAMILTON: They want to know how to help. So that is why I like some of these peripheral areas of our site, such as "eating well" and "living well" with cancer that help people to figure out exactly what they can do to help their family members who are going through this.
ONCOLINK: Is your target audience are really the patients and family members at this point?
SCOTT HAMILTON: Yes, we are targeting families and patients. However, we are hoping that anyone that wants to know a little bit more about chemotherapy or what it is about will also use the site. We want people to see this because there are a lot of people who are afraid of self-examination. They are afraid of chemotherapy. If we can put a face on this or take the veil off, so to speak, and let them know what this mysterious chemotherapy is and how it is difficult to get through-if we can kind of strip some of that away by humanizing it and showing how to deal with side effects to make it easier, I think people would be less fearful of it and they will think of how they can self examine and they are not going to think of chemotherapy as this horrible disastrous-worse-than-death experience. They will realize that it is part of being well and it is not easy, but it is part of getting well and it is better than the alternative.
ONCOLINK: I think it is great that you can bring in the human side of this because you have been through this process. You have the medical side of the experience covered well, through the help of the people at The Cleveland Clinic.
SCOTT HAMILTON: It is a wonderful thing to say, "I have been there-you can do it." "I have done it-you can do it too." I want to let people know they are not alone. A lot of people think when they are diagnosed with cancer that they have to go through chemotherapy by themselves, and that no one understands what they are going through. There is such a resource of survivors out there and this is another way of empowering survivors. We have, as part of the advocacy portion of the site, survivors' stories and experiences. That lets people know, OK, there is somebody out there that is sharing what he went through and this is very inspirational to understand that someone else has done it and that I can do. This is a very common feeling among patients.
ONCOLINK: The holidays are coming up and it can be a difficult time for cancer patients, family members, and friends. Having been through this experience, what would you suggest people do for cancer patients around the holidays?
SCOTT HAMILTON: That is really a wonderful question! You are making me think of this for the first time. I will try to be quick. A lot of my experience when I was going through chemotherapy was just time spent, time shared with people. There is nothing more valuable than the gift of sharing your time. I would say to just be there for somebody. Simple physical contact and interaction is a greater gift and a better joy than anything material you can give somebody. Simply time spent, whether it be sitting down and just talking or watching a movie together or even creating art. It is just something about being with people that you love when you are going through something like this. It is much more valuable than anything else.
ONCOLINK: I think that is a great suggestion for people. Thanks so much for spending this time with OncoLink, Scott. If there is anything we can do at OncoLink to help promote your site or working with you in the future, please let us know.
SCOTT HAMILTON: You are very kind and I appreciate everything you are doing for us, I really do.
ONCOLINK: Can you tell me a little bit about how you got involved with this development of this web site?
RUTH FRITSKEY: I got involved because, first of all, I saw a need, a big gap. Scott said, "There needs to be better information on the Internet," and I said, "Well, you know, I think we can do something like that, but we need a little help." So we struck up a partnership with Ortho Biotech, Scott, and The Cleveland Clinic, and set about to put it all together. With a concept Scott and I developed, we formed a team to develop the content, and put together ChemoCare.com. We have tried to be very comprehensive, including everything, drugs, side effects, and everything that a person might need to know when going through the chemotherapy experience.
ONCOLINK: I had a chance to review the site. I am really impressed. I think you have a lot of great information there. Just launching the first day and having all this good information up this quickly, is impressive. You have done a great job of putting this together.
RUTH FRITSKEY: Thank you very much. It has been a daunting project. I see so much potential. I am looking forward to hearing the feedback from patients to see how we might be meeting their needs and how we can better meet their needs. I think it is a real good start at addressing a big gap of information in an easy to navigate, user friendly way.
ONCOLINK: I told Scott that I think it is wonderful that you have hooked up with Ortho Biotech, too. They have been a great support of OncoLink for a number of years. I think they really understand the need for information on the Internet and are able to get good information out to people.
RUTH FRITSKEY: You know, it is very nice to have a corporation who is so motivated to help with patient resources and who is really interested in getting good quality information directly to the patients. It has been a real pleasure working with them to do this.
ONCOLINK: What do you really want to see accomplished looking back a year from now?
RUTH FRITSKEY: After one year, what I would like to see is chemocare.com being something that is a buzz in the cancer community. That any time that someone would be prescribed chemotherapy that they would be told, "Ah, there is this great site out there called chemocare.com." I want it to be recommended because it is a helpful service, not because someone is recommending it, but because someone who has been helped by it recommends it to someone else. I would like to see it be really, the premier resource for patients who are undergoing chemotherapy, something that they find so helpful that the word just spreads.
ONCOLINK: Can you tell me a little bit about your background?
RUTH FRITSKEY: Certainly, I am an oncology nurse. I have been an oncology nurse for the last ten years at the Cleveland Clinic and for probably my entire nursing career; I have a Master's degree in Oncology nursing as well. I really have spent my entire career focused on cancer nursing and the last ten years on cancer education, specifically.
ONCOLINK: How did you and Scott end up getting together to do this project?
RUTH FRITSKEY: Scott was a patient at the Cleveland Clinic. He went there when he was diagnosed with cancer. I was fortunate enough to be introduced to him when he was getting suggestions regarding what he wanted to do, becoming involved in the foundation called Scott Cares, he wanted to do things to help people and give back to the community. I was fortunate enough to be introduced and have an opportunity to brainstorm and sort out some ideas. We were a natural match for this project. Chemocare.com is the product of that relationship and I could not be more thrilled to have been involved in such a great project.
ONCOLINK: It looks as though you make a great team. I am certainly impressed with the launch and what it looks like today; you are doing a great job already. I have already asked this question of Scott, but wanted to hear your perspective on it, particularly from your experience as an oncology nurse. The holidays are coming up and can be a difficult time for a lot of patients' friends and families. Many people ask, "What can I do for a cancer patient at this time of year?" "What can I do as a gift?" What would you suggest to families and friends of cancer patients at this time?
RUTH FRITSKEY: Actually, some of this information exists on chemocare.com, in the FAQs section we ask about energy conservation and holidays and things you can delegate. Also, the article called, "Caring for chemotherapy," we specifically mention that people always want to help and they don't know what they can do to help. The patient, who can be overwhelmed by the whole process, never knows what to ask them to do. So we have actually come up with a list of things you can delegate that will make both the friends and the patient feel good, accomplishing two goals. Some of those things include childcare, helping with transportation, preparing some meals, keeping the patient company. There are a variety of things that other people can do to help.
ONCOLINK: The site looks wonderful. Good luck with everything. It is great to see a new web site that is high quality on the Internet. I think it is so important to get good, accurate information to patients and their families.
RUTH FRITSKEY: Thank you very much. We agree and thank you so much for taking the time this morning.