Colleen Young had suggested we communicate with each other on March 4, 2019. At that time I was facing an upcoming appointment which I find very difficult. Fortunately, it all went well, but prior to my going to the clinic, I feel almost paralyzed with fear. I wrote to Dale/ @pauldale4 regarding my thinking at this time because I, too, must limit my contact on-line. I do want to reach out to other women who are going through this experience, but I feel my capacity to "make a difference" in any way is minimal at this time. While I once played the role of the strong one in my family, I now often feel incapable of functioning in that capacity. Thank goodness for my wonderful family and friends who are incredibly understanding. I'm hoping to stay in touch with you, but I'm not consistent in my on-line communication like some women. Hope you are doing well.
Sorry I havenāt been posting lately, I was spending too much time reading posts on multiple sites like the Facebook group āSisterhood of Ovarian Cancer Survivorsā 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 thatās kind of selfish but I have to be careful I donāt get too depressed. I have 3C high grade, Iām 2 1/2 years since diagnosed and am facing my second recurrence. Iām being considered for the Herceptin trial as I have the Her2 gene. Iām excited about this as not too many ovarian patients have that gene, it was only used previously for breast cancer patients. Itās 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 havenāt 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 donāt see me on here. Love and hugs to you all.
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.
Hi @joannedb and welcome to Connect.
We have a small group of women sharing about ovarian cancer on Connect. Allow me to introduce you to @mfell@gill@jfc4@libbysmom and @mohavegal. I'm also including @hopeful33250 in this discussion. While she doesn't have ovarian cancer, she is one of our mentors in the Cancer group and a great support.
When were you diagnosed with cancer Joanne? How are you doing today?
Sorry I havenāt been posting lately, I was spending too much time reading posts on multiple sites like the Facebook group āSisterhood of Ovarian Cancer Survivorsā 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 thatās kind of selfish but I have to be careful I donāt get too depressed. I have 3C high grade, Iām 2 1/2 years since diagnosed and am facing my second recurrence. Iām being considered for the Herceptin trial as I have the Her2 gene. Iām excited about this as not too many ovarian patients have that gene, it was only used previously for breast cancer patients. Itās 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 havenāt 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 donāt see me on here. Love and hugs to you all.
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! š
@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?
Colleen Young, Connect Director | @colleenyoung | Mar 4, 2019
@rochellewisner and @odette, as you wait to find an in-person support group in your respective areas, I invite you to join other women here who are talking about living with ovarian cancer of all types and grades. Why don't you start by telling the group a bit about you?
Sorry I havenāt been posting lately, I was spending too much time reading posts on multiple sites like the Facebook group āSisterhood of Ovarian Cancer Survivorsā 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 thatās kind of selfish but I have to be careful I donāt get too depressed. I have 3C high grade, Iām 2 1/2 years since diagnosed and am facing my second recurrence. Iām being considered for the Herceptin trial as I have the Her2 gene. Iām excited about this as not too many ovarian patients have that gene, it was only used previously for breast cancer patients. Itās 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 havenāt 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 donāt see me on here. Love and hugs to you all.
@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?
@susu2 Hey thanks, sorry to hear about the brain fog and balance issues. š I have been blessed there, I haven't really experienced that, but I hear, like you it's somewhat frustrating. Glad you're taking it in stride and at least marking the positives - no nausea and loss of appetite! Maybe the walker will provide a bit of independence and keep you moving to try to push that fatigue. I've been going to bed early and learning to make the best of the times I do have more energy. I imagine you do the same. Well...onward is right.
Sorry I havenāt been posting lately, I was spending too much time reading posts on multiple sites like the Facebook group āSisterhood of Ovarian Cancer Survivorsā 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 thatās kind of selfish but I have to be careful I donāt get too depressed. I have 3C high grade, Iām 2 1/2 years since diagnosed and am facing my second recurrence. Iām being considered for the Herceptin trial as I have the Her2 gene. Iām excited about this as not too many ovarian patients have that gene, it was only used previously for breast cancer patients. Itās 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 havenāt 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 donāt see me on here. Love and hugs to you all.
@susu2 Hey thanks, sorry to hear about the brain fog and balance issues. š I have been blessed there, I haven't really experienced that, but I hear, like you it's somewhat frustrating. Glad you're taking it in stride and at least marking the positives - no nausea and loss of appetite! Maybe the walker will provide a bit of independence and keep you moving to try to push that fatigue. I've been going to bed early and learning to make the best of the times I do have more energy. I imagine you do the same. Well...onward is right.
@travelgirl Hi, I too just returned from traveling, so sorry for my slow response. Wow, 2 diagnoses within a week must have been overwhelming. I like your spirit! I do agree, a resilient state of mind and hope goes a long way! I just retired from school counseling due to the high crisis stress and the side effects and wanted to proactively take some steps to be healthier and happier. I set some goals, one being certified as an animal therapy team with my dog, Marshall, which I did. We're seeing kids weekly when I'm in town and love it! The rest of the time, I'm finding how to "stay busy" in a good way.
I have to fight my urge to get online to research to find the next option if these meds stop working, especially when I start feeling new symptoms or something feels off. But you're right, it never leaves me in a good place. I end up doing it all over again with the docs once a change is needed so I really don't need that extra stress. I find myself wanting to ask questions that doctors or researchers just can't answer at this point. I need to remember what my first oncologist said when I asked him about statistics, "What does it matter, you happen to be "one" and no one knows where your "one" will be on the charts." lol, I can so understand your brain hurting! Sometimes it's paralyzing and I just throw the thought of it behind me!
Thank you for the link! I'm definitely going to check out the exercise and look into yoga. I previously adapted (had a stroke at 18 years and have right side weakness with arm/leg) a bit of yoga at home.
My next appointment is the end of March for labs & treatment and my scans to check on the status of the cancer is the end of April. I was really blessed last week, my counts were so low I was told we may have to skip treatment, but they shot up this time. I'm saying it's the sunshine in Florida š on my trip and prayers that gave a boost to the ol' immune system! That way if they bottom out again, it's a great excuse for another sun and sand vacation. lol š
Hey, thanks so much, Jackie. I really appreciate your time to share your journey and advice.
Leann: Glad you got to travel-a perk-up. I have had 2 infusions with just Carboplatin no Taxol. They give me anti-nausea drips first and I have had no nausea and no loss of appetite but my brain power is slipping. I keep forgetting names/words and canāt do complex processes (I have a sweater knitting project going and canāt seem to process the directions!). As mentioned before I do not have good balance all of a sudden so have gotten a walker but have not used it yet as I usually have my husband to hang on to. Trying to come to terms with being a changed (old) person. Often tired. Well... onward. Susu2
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Colleen Young had suggested we communicate with each other on March 4, 2019. At that time I was facing an upcoming appointment which I find very difficult. Fortunately, it all went well, but prior to my going to the clinic, I feel almost paralyzed with fear. I wrote to Dale/ @pauldale4 regarding my thinking at this time because I, too, must limit my contact on-line. I do want to reach out to other women who are going through this experience, but I feel my capacity to "make a difference" in any way is minimal at this time. While I once played the role of the strong one in my family, I now often feel incapable of functioning in that capacity. Thank goodness for my wonderful family and friends who are incredibly understanding. I'm hoping to stay in touch with you, but I'm not consistent in my on-line communication like some women. Hope you are doing well.
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1 ReactionWhen 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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1 Reaction@rochelle
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! š
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1 ReactionThanks for responding. I should find out this week. I have to get an echocardiogram first.
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1 Reaction@rochellewisner and @odette, as you wait to find an in-person support group in your respective areas, I invite you to join other women here who are talking about living with ovarian cancer of all types and grades. Why don't you start by telling the group a bit about you?
@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?
Sorry I havenāt been posting lately, I was spending too much time reading posts on multiple sites like the Facebook group āSisterhood of Ovarian Cancer Survivorsā 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 thatās kind of selfish but I have to be careful I donāt get too depressed. I have 3C high grade, Iām 2 1/2 years since diagnosed and am facing my second recurrence. Iām being considered for the Herceptin trial as I have the Her2 gene. Iām excited about this as not too many ovarian patients have that gene, it was only used previously for breast cancer patients. Itās 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 havenāt 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 donāt see me on here. Love and hugs to you all.
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1 Reaction@susu2 Hey thanks, sorry to hear about the brain fog and balance issues. š I have been blessed there, I haven't really experienced that, but I hear, like you it's somewhat frustrating. Glad you're taking it in stride and at least marking the positives - no nausea and loss of appetite! Maybe the walker will provide a bit of independence and keep you moving to try to push that fatigue. I've been going to bed early and learning to make the best of the times I do have more energy. I imagine you do the same. Well...onward is right.
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1 ReactionLeann: Glad you got to travel-a perk-up. I have had 2 infusions with just Carboplatin no Taxol. They give me anti-nausea drips first and I have had no nausea and no loss of appetite but my brain power is slipping. I keep forgetting names/words and canāt do complex processes (I have a sweater knitting project going and canāt seem to process the directions!). As mentioned before I do not have good balance all of a sudden so have gotten a walker but have not used it yet as I usually have my husband to hang on to. Trying to come to terms with being a changed (old) person. Often tired. Well... onward. Susu2
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