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Sorry I haven’t been posting lately, I was spending too much time reading posts on multiple sites like the Facebook group “Sisterhood of Ovarian Cancer Survivors” and all the negative postings were getting me down so I only look when I want to find out about a specific treatment or problem. I guess that’s kind of selfish but I have to be careful I don’t get too depressed. I have 3C high grade, I’m 2 1/2 years since diagnosed and am facing my second recurrence. I’m being considered for the Herceptin trial as I have the Her2 gene. I’m excited about this as not too many ovarian patients have that gene, it was only used previously for breast cancer patients. It’s worked well for them so they think why not work for ovarian. I have tumors on my liver, kidney, aortic lymph and abdomen. If you haven’t had genomic testing I recommend you do as it shows what treatments are the best per your chemistry. I pray everyday for all my teal sisters and private message me if you don’t see me on here. Love and hugs to you all.
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Hi @pauldale4, I really agree with @colleenyoung. I don't think it's selfish to be selective. The wisdom comes in knowing when to step away from too much and what information to give credibility to. Thank you for all your prayers for us "teal sisters". It's always good to remember we're not in this battle alone! 🙂
When I was being treated for ovarian cancer, my medical team recommended that I not join a support group. They felt there were better ways for me to deal with my diagnosis. I spoke with a social worker on my team who was very nice. However, I felt that the support from my family and friends was ultimately more helpful. After a year, I decided to venture out and make contact with women in various on-line forums. I did connect with several women who had very similar diagnoses to mine and I maintain an on-going relationship with them privately. At times, I became so "emotionally involved" when reading posts on-line, that my team recommended I spend less time communicating in that way. I limit my time now and although I, too, felt "selfish" initially, everyone told me that I am still recovering and in many ways I find the emotional aftermath harder to cope with on a daily basis. Because my background is in science (certainly not in this area, however), I find staying on top of the latest research specific to the etiology of my OC valuable to me. I exercise, do yoga and meditation daily...anything in my arsenal to deal with anxiety. I do feel compelled to reach out to all of the women who have and are suffering with this disease. At this point, I'm trying to heal so I can do something in the future when hopefully I will be better equipped to face the future. There is a lot of discussion out there on dealing with the 15 million cancer survivors in our country who need not only medical, but emotional support as we try to navigate in our world...looking forward. I am thinking of you and hoping for the best.
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@pauldale4, I don't think it is being selfish to be selective about how you spend your time and with whom. We often sign up for multiple online support groups, especially when seeking answers. Cast the net wide to gather information, right. But then it can become too much and overwhelming. That's when you pick and choose what is right for you.
When do you find out about getting into the Herceptin trial?