Anne: Three weeks after my surgery, I drove myself to Johns Hopkins and went to a survivor meeting. The guest speaker was Jearlene Taylor – she had cancer when she was three years old. She had both bags (urostomy and colostomy) She became a model about 16 or 17 years ago, and she spoke at the survivor meeting. I was still really tired after the surgery. Jearlene spoke about all the things she does and it made me think well, there is a possibility of having exactly everything you want and just making a few things that are different. She said so many things that made me believe, okay, I can go to Europe and go dancing. I dance almost every day now. It gives you hope that this is not going to be the end of your life. You’re not that old. But you feel like that when you’re going through the process. I know there are a lot of dark days. Have people around you, the staff and survivors in a group, they are the ones that really help you. Being with other survivors has helped me a lot because I learned things almost every week about.
As far as having a urostomy, I think it would have been helpful to have called the companies that provide supplies since the medical staff is so busy. The nurse was very important. They were all important, particularly the oncology nurses, and the technicians.
Karen: I have one thing that is a practical issue. After I had either the BCG treatment or the mitomycin, my whole perineal area felt like it was just on fire and red. In the beginning I thought all this discomfort and pain was internal, and that some of it was in my bladder. Because I’m an oncology nurse and I have worked a lot with children. When those children are expelling chemotherapy in their urine, we use barrier creams on their bottoms. So I gave that a try. I just slathered myself with barrier cream, (DESETIN® or another type), and that made a huge difference in my comfort after the treatment, once I expelled it. I’m passing that along if doctors are not telling that to their female bladder cancer patient.
Lee: At the university they offered yoga for cancer patients which I found very helpful and very soothing. They also had a survivorship program there. They have a person who gave foot massages once a week, if I was lucky enough to be there on Wednesday. I found the yoga very, very relaxing. Now I’m a volunteer in the center of where I had my treatment. I go there at least twice, sometimes three times every week. I really feel so wonderful to be able to give back and to talk to all of those patients who are going through what I went through. Believe me, I know I’ve made differences in other people’s lives, and you can’t buy that.