Thank you all for this educational experience
In the short time I have been visiting and contributing to these discussions, however, the overall tone I feel when visiting the site is not one of appreciation. I’m not saying that I expected everyone to embrace my experience, but frankly I expected that there would be more compassion, understanding, and tolerance. I am glad that I could help a few women here, but I feel, overall, that my experiences and knowledge are unwelcomed by the vocal core of this group. Whether you are aware of it or not, there are two definite overtones on this board, “Don’t rock the boat,” and “Keep the fear and hopelessness alive.” Far be it from me to continue posting my experiences of hope and empowerment in such an unappreciative environment.
I was so grateful when I met my naturopath. What an inspiration of hope, having had stage IV OC 20 years ago and treating it and keeping it in remission without surgery or drugs. Not one of her cancer patients, who have begun working with her early in their illness, has had a recurrence, and she has been practicing for 17 years. Though neither she nor I are advocating self treatment of the initial disease, I don’t need the FDA or, anyone else for that matter, to tell me that she is doing something right, and I plan to continue following in her footsteps.
Bless you all and the best of luck,
Kate
Comments
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I've been on this board for
I've been on this board for a year now. In that time, I've come most often when the "fear and hopelessness" of living with IIIC OVCA threaten to overwhelm me because that is NOT the message that I get here. I come here for hope, friendship and the overwhelming reiteration that LIFE is worth LIVING no matter what comes down the pike. I'm sorry that you feel so unwelcome. I went back through some of the threads, and to be honest, I've read multiple posts from others who have thanked you for sharing your experiences, asked you questions and shared their own experiences.
I think we all have embraced a variety of methodologies and treatments. I've read posts from women who have received acupuncture, Vitamin infusions, changed their diets drastically, changed their way of life, posts from women who have relied solely on traditional medical therapies, posts from women who are in Phase I trials, posts from women who are in Phase III trials and posts from women who have elected to stop treatment altogether. A common thread links us all, whatever stage of life or disease we are experiencing...we want to live life to the fullest extent possible.
We are outspoken, we laugh together, we cry together, we grieve together, (Bonnie, Dorian, Saundra, ladyjogger...), we fight together. The key word through all of this is "together." We may not always agree with each other, but part of educating others about the choices they have is presenting all sides of potential therapies and scenarios. If we all agreed about the way to treat this disease, there would be no need for this board.
I do tend to disagree vocally when someone presents a unsubstantiated "cure all" (like the all asparagus, all the time diet), but your posts are not like that. You advocate for alternative therapies in conjunction with traditional therapies. To paraphrase Voltaire, I may not agree with you, but I'll defend your right to share your experiences. By the same token, when you disagree with me, feel free to let me know!
In the long run, who knows, the key to surviving with cancer may not be in anything we put into our bodies, but rather, what we put into our hearts and our minds and our own will to live.
At any rate, the gist of rather long winded posting is this....
Stick around for awhile, we're all nice folks going through tough times together. We're Teal Warrior Sisters and like sisters, we don't always have the same style or approach, but when we need each other, we're there for each other!
Hugs!
Leesa
PS: If it turns out that asparagus really DOES cure cancer, boy..won't I feel stupid!0 -
Leesa, AMEN!leesag said:I've been on this board for
I've been on this board for a year now. In that time, I've come most often when the "fear and hopelessness" of living with IIIC OVCA threaten to overwhelm me because that is NOT the message that I get here. I come here for hope, friendship and the overwhelming reiteration that LIFE is worth LIVING no matter what comes down the pike. I'm sorry that you feel so unwelcome. I went back through some of the threads, and to be honest, I've read multiple posts from others who have thanked you for sharing your experiences, asked you questions and shared their own experiences.
I think we all have embraced a variety of methodologies and treatments. I've read posts from women who have received acupuncture, Vitamin infusions, changed their diets drastically, changed their way of life, posts from women who have relied solely on traditional medical therapies, posts from women who are in Phase I trials, posts from women who are in Phase III trials and posts from women who have elected to stop treatment altogether. A common thread links us all, whatever stage of life or disease we are experiencing...we want to live life to the fullest extent possible.
We are outspoken, we laugh together, we cry together, we grieve together, (Bonnie, Dorian, Saundra, ladyjogger...), we fight together. The key word through all of this is "together." We may not always agree with each other, but part of educating others about the choices they have is presenting all sides of potential therapies and scenarios. If we all agreed about the way to treat this disease, there would be no need for this board.
I do tend to disagree vocally when someone presents a unsubstantiated "cure all" (like the all asparagus, all the time diet), but your posts are not like that. You advocate for alternative therapies in conjunction with traditional therapies. To paraphrase Voltaire, I may not agree with you, but I'll defend your right to share your experiences. By the same token, when you disagree with me, feel free to let me know!
In the long run, who knows, the key to surviving with cancer may not be in anything we put into our bodies, but rather, what we put into our hearts and our minds and our own will to live.
At any rate, the gist of rather long winded posting is this....
Stick around for awhile, we're all nice folks going through tough times together. We're Teal Warrior Sisters and like sisters, we don't always have the same style or approach, but when we need each other, we're there for each other!
Hugs!
Leesa
PS: If it turns out that asparagus really DOES cure cancer, boy..won't I feel stupid!
I thought I was watching/reading an infomercial. I'm a bit sensitive to people being taken advatige of when they are ina tough time. I'm with you, If it turns out that asparagus really DOES cure cancer, boy..won't I feel stupid!0 -
I can't believe you are saying this to us!!!
I am very glad you have been in remission for 20 years. Many of us have not beeb so lucky. You found a tx that was good and kept you well. I always respected your post and your knowlege of alterative therapy!!. We are not here for a populariy contest but to give each other much needed hope. WE compare notes and symtoms and lift each other up when we are scared or just need to vent. We are happy when someone is done with chemo or ca-125 is way down. Frankly, sometimes I felt like throwing in the towel and saying the heck with it all, but these gals have helped me alot and I am truely grateful for that. To me your post sounds like you are lookig down on me because I vhoose to go the conventional route. We all are different and no one should judge us!! If you don't like our site then find another.0 -
Hi Kate,
welcome to the board. I am so happy for you that your have survived cancer so long. What an inspirtion you are!
I am a 3 1/2 year survivor and before cancer dx, I was under the care of a naturopath. Because I had endometriosis, she had ordered a CA125 for me (very unusual for any doctor to do when there are no signs of ovca) twice a year, so I am one of the few who know what my base line number is. By the time I was dx, it had zipped up to 590 (and that was in 6 months). Initially, I used some herbs etc that she recommended after my first line chemo to cleanse and build my immune system.
Then, my naruopath doctor who had never smoked a day in her life and always had taken care of herself, got lung cancer. She died a year later. To be honest, it really bummed me out, and I never found another naturopath doctor after that. I have always had a healthy life style and have tried to continue in that path, but don't spend my money on all the herbs etc that I used to buy.
I know quite a few women, who have had late stage ovca, never recurred and eat whatever they want (including ice cream, sugar, meat and junk food), and don't excersise. Go figure!
From my own experience, and what I have read, it seems that cancer is no "respecter of persons"!
We have had some posts from people selling products before with incredible testimonies of recovery, so it could be that initially, there was a bit of a suspision that you were going to try and sell something. Just a feeling I had, when I read your post above. I missed your earlier posts.
I wish you the very best,
kathleen0 -
No, No, No, Kate
Good Morning,
I read all of your posts. I even found several naturopath's in my area. The problem is that my insurance company is not going to pay for it. I imagine it is quite costly. With going to nursing school and having to pay for books and clinical fees and just monthly bills, I did not think I could fit it in my budget. I think everything the naturopath does makes sense. All of us are in fear. How can we not be? I am a 4 time cancer survivor and I am still going on on with my life as best I can. What I see the most on this board is support and I do not know about everyone else, but I need that. Please, I want to hear about the treatment you are getting from the naturopath and the costs. Thank-You, Paula0 -
Education
It's a diverse group here, so you'll get all kinds of responses. I say, "Take what you want/need and leave the rest." If you only want a cheering squad, just say so in your post and I believe folks will respect your wishes. I am glad for all the different perspectives since OC is such a mystery to everyone so far.
I am a bit leery of advertisers, self-promoters, and the like. Sometimes it's hard to discriminate who is carrying what agenda, if you know what I mean.
Interestingly, my doctor explained to me that within each individual, their cancer is not just one type, but probably several different types of cells. So it makes sense that many different therapies work (or don't work) on different folks.
Good luck, and here's to your continued good health.0 -
UH
UH? Have we been reading the same board? I don't mean that in a disrespectful manner but unless you got some private emails I missed the sense of "hopelessness" of which you speak or of disrespect or unappreciation towards your journey. I was intrigued by many of your recommendations; many of them are not available to be because I am on blood thinners so I have a whole range of dietary and food restrictions. Also the coastal town I live in in California abounds with naturopaths, alternatives and complementary therapies. My insurance does not cover a single one of them and being early retired and a son in college I am barely able to keep up with my required insurance deductibles and co pays.
You stated: "....in such an unappreciative environment." To really understand how you were so horribly slighted I would need some examples of what lead you to that conclusion. If mine or some others' conduct or responses were hurtful, then I can't know what I should do differently in the future to make sure no one feels unwelcome. It would be a tragedy when suffering with this crappy cancer to have been made to feel unappreciated. Susan0 -
ditto Leesa
I'm sorry that you haven't found what you needed here and I mean that most sincerely. I'm not sure I could have made it through the last 13 months of chemo without the love, knowledge, support and understanding that I have found here and my hope is that I might have been there at a time when someone else needed that from me.
Maria0 -
I think, first of all, thatMwee said:ditto Leesa
I'm sorry that you haven't found what you needed here and I mean that most sincerely. I'm not sure I could have made it through the last 13 months of chemo without the love, knowledge, support and understanding that I have found here and my hope is that I might have been there at a time when someone else needed that from me.
Maria
I think, first of all, that some members have Kate's story mixed up with the lady she gets her supplements from. Kate was diagnosed in July of 2009 - just 2 months before me. You and I are chemo twins, Kate, except that my consolidation treatment was different (Taxol only) .
Secondly, I sincerely hope that my posts regarding alcohol, sugar, etc did not seem like a personal attack. I surely did not mean them to be. I only wanted to point out that my doctors, both my local gyn/oncologist and the highly respected and well known research physician, Paul Sabbitini, subscribe to the all-things-in-moderation theory. I trust their judgment, and I view that trust as an essential part of our relationship , and my treatment plan. Your faith in the team of professionals that has given you such great success is admirable and I applaud your loyalty and your willingness to be so willing to adapt. As Leesa said, the fact that we don't all agree with your point of view, or express a desire to know more about your alternative treatments does not mean we don't admire and support you.
I did the traditional 6 rounds of Carbo/Taxol, then opted for a year of Taxol maintenance. Now I am in New York (even though I live in Texas) doing a clinical trial at MSKCC for a vaccine - though like you, I am in complete remission. Plenty of people think I'm nuts, but that's okay. I love all my virtuL sisters, no matter where they are spiritually or POV.
Carlene0 -
Fear and hopelessness.Hissy_Fitz said:I think, first of all, that
I think, first of all, that some members have Kate's story mixed up with the lady she gets her supplements from. Kate was diagnosed in July of 2009 - just 2 months before me. You and I are chemo twins, Kate, except that my consolidation treatment was different (Taxol only) .
Secondly, I sincerely hope that my posts regarding alcohol, sugar, etc did not seem like a personal attack. I surely did not mean them to be. I only wanted to point out that my doctors, both my local gyn/oncologist and the highly respected and well known research physician, Paul Sabbitini, subscribe to the all-things-in-moderation theory. I trust their judgment, and I view that trust as an essential part of our relationship , and my treatment plan. Your faith in the team of professionals that has given you such great success is admirable and I applaud your loyalty and your willingness to be so willing to adapt. As Leesa said, the fact that we don't all agree with your point of view, or express a desire to know more about your alternative treatments does not mean we don't admire and support you.
I did the traditional 6 rounds of Carbo/Taxol, then opted for a year of Taxol maintenance. Now I am in New York (even though I live in Texas) doing a clinical trial at MSKCC for a vaccine - though like you, I am in complete remission. Plenty of people think I'm nuts, but that's okay. I love all my virtuL sisters, no matter where they are spiritually or POV.
Carlene
Hey , it is scary, and the other day I did feel hopeless , but the next day i bounced back and felt a lot better, this is not to say I am feeling great about all this all the time, but I am trying to remain positive it is all i can do for my mum. Please be respectful that some days it is s**t and you do feel helpless and scared of what the future holds, we are all entitled to feel a bit low going through this crap.
Take care, liz0 -
Fear and hopelessness.Hissy_Fitz said:I think, first of all, that
I think, first of all, that some members have Kate's story mixed up with the lady she gets her supplements from. Kate was diagnosed in July of 2009 - just 2 months before me. You and I are chemo twins, Kate, except that my consolidation treatment was different (Taxol only) .
Secondly, I sincerely hope that my posts regarding alcohol, sugar, etc did not seem like a personal attack. I surely did not mean them to be. I only wanted to point out that my doctors, both my local gyn/oncologist and the highly respected and well known research physician, Paul Sabbitini, subscribe to the all-things-in-moderation theory. I trust their judgment, and I view that trust as an essential part of our relationship , and my treatment plan. Your faith in the team of professionals that has given you such great success is admirable and I applaud your loyalty and your willingness to be so willing to adapt. As Leesa said, the fact that we don't all agree with your point of view, or express a desire to know more about your alternative treatments does not mean we don't admire and support you.
I did the traditional 6 rounds of Carbo/Taxol, then opted for a year of Taxol maintenance. Now I am in New York (even though I live in Texas) doing a clinical trial at MSKCC for a vaccine - though like you, I am in complete remission. Plenty of people think I'm nuts, but that's okay. I love all my virtuL sisters, no matter where they are spiritually or POV.
Carlene
Hey , it is scary, and the other day I did feel hopeless , but the next day i bounced back and felt a lot better, this is not to say I am feeling great about all this all the time, but I am trying to remain positive it is all i can do for my mum. Please be respectful that some days it is s**t and you do feel helpless and scared of what the future holds, we are all entitled to feel a bit low going through this crap.
Take care, liz0 -
Fear and hopelessness.Hissy_Fitz said:I think, first of all, that
I think, first of all, that some members have Kate's story mixed up with the lady she gets her supplements from. Kate was diagnosed in July of 2009 - just 2 months before me. You and I are chemo twins, Kate, except that my consolidation treatment was different (Taxol only) .
Secondly, I sincerely hope that my posts regarding alcohol, sugar, etc did not seem like a personal attack. I surely did not mean them to be. I only wanted to point out that my doctors, both my local gyn/oncologist and the highly respected and well known research physician, Paul Sabbitini, subscribe to the all-things-in-moderation theory. I trust their judgment, and I view that trust as an essential part of our relationship , and my treatment plan. Your faith in the team of professionals that has given you such great success is admirable and I applaud your loyalty and your willingness to be so willing to adapt. As Leesa said, the fact that we don't all agree with your point of view, or express a desire to know more about your alternative treatments does not mean we don't admire and support you.
I did the traditional 6 rounds of Carbo/Taxol, then opted for a year of Taxol maintenance. Now I am in New York (even though I live in Texas) doing a clinical trial at MSKCC for a vaccine - though like you, I am in complete remission. Plenty of people think I'm nuts, but that's okay. I love all my virtuL sisters, no matter where they are spiritually or POV.
Carlene
Hey , it is scary, and the other day I did feel hopeless , but the next day i bounced back and felt a lot better, this is not to say I am feeling great about all this all the time, but I am trying to remain positive it is all i can do for my mum. Please be respectful that some days it is s**t and you do feel helpless and scared of what the future holds, we are all entitled to feel a bit low going through this crap.
Take care, liz0 -
Ooooops sorry!Mum2bellaandwilliam said:Fear and hopelessness.
Hey , it is scary, and the other day I did feel hopeless , but the next day i bounced back and felt a lot better, this is not to say I am feeling great about all this all the time, but I am trying to remain positive it is all i can do for my mum. Please be respectful that some days it is s**t and you do feel helpless and scared of what the future holds, we are all entitled to feel a bit low going through this crap.
Take care, liz
This blooming iPad, triple post! I think am just to impatient and keep tapping the buttons! Whoops!0 -
KateMum2bellaandwilliam said:Ooooops sorry!
This blooming iPad, triple post! I think am just to impatient and keep tapping the buttons! Whoops!
So sorry you are disappointed with this board. I have not been on as long as some others but I quickly found a group of women with the same fears, questions and need to vent that I have. I have a very loving and caring family but none of them have to live with OVCA every moment of each day. These women do and I know of no better source of support, love and caring. I have never been offended or read any posts that put down any treatment that anyone chooses to pursue. I am truly sorry that you feel the way you do and hope you will stay and "feel the love".
Verna0 -
Hi Kate, You know I read a lot of the posts and I want to say something and then I don't.
But I am so glad that you have gone 20 years and are doing good. That is wonderful.
We are all different. But I have to say that this board has been so very good for me. Just knowing that I am not going through this alone means a lot to me. And some of these ladies are so knowledgeable. And the times that I get angry... they don't seem to mind to listen to me vent.
I went for 17 years NED and then it popped its ugly head back up in 2008. After reading this board, I could be doing a lot of things that I don't do that I think I should be doing. I usually run it by my doctor and then decide.
One thing is that I do believe in prayer, miracles and that the Lord above has control over everything. But that doesn't mean that everyone on this board believes that.
Whatever you are doing.... you keep it up. You are a walking testimony.
Hugs and prayers to you.
Linda0 -
clarify
Just to clarify.....The poster is not a 20yr survivor. Her naturopath is.
Kate, I wonder if it is the lack of enthusiasm to your beliefs more than it is no appreciation. I really try to respect others point of view.
Isn't this all a little "marleypoo"? or was it 'marleyboo"? The veteran members will know what I am talking about.
Either way, Kate, I do hope you continue to read and contribute.0 -
Dear Kate,
I am sorry and upset to read your post. I am rather new to this group since my September diagnosis of Stage IV OVCA. As I mentioned in one of my posts, my brother died two years ago from colon cancer. It was not until his last months that he began to pursue treatment options outside of the traditional including working with a naturopath and Vit C IV. Who knows how much longer he might have survived if he had taken a more active role in his treatment 4 years earlier. I have noted much of what you have posted and have begun steps to incorporate what I have learned from you and others on this board as I try to take an active role in the treatment of my disease. I come here for support and to educate myself. I value your experience and thank you for sharing, I hope that you will reconsider. Christine0 -
Thanks Nancynancy591 said:clarify
Just to clarify.....The poster is not a 20yr survivor. Her naturopath is.
Kate, I wonder if it is the lack of enthusiasm to your beliefs more than it is no appreciation. I really try to respect others point of view.
Isn't this all a little "marleypoo"? or was it 'marleyboo"? The veteran members will know what I am talking about.
Either way, Kate, I do hope you continue to read and contribute.
Thank you Nancy. I did read Kate's post wrong. I guess it was my chemo brain kicking in.
Linda0 -
Nancy,nancy591 said:clarify
Just to clarify.....The poster is not a 20yr survivor. Her naturopath is.
Kate, I wonder if it is the lack of enthusiasm to your beliefs more than it is no appreciation. I really try to respect others point of view.
Isn't this all a little "marleypoo"? or was it 'marleyboo"? The veteran members will know what I am talking about.
Either way, Kate, I do hope you continue to read and contribute.
thanks for the clarificaiton, I had read it wrong too.
k0 -
Kate
This board is a safe place where you can celebrate your good news or share the bad and there is always someone who will be there for you. The hope,friendship and support here is priceless. Yes there is fear, anyone faced with our situation would be fearful.
It sounds like you are upset that you cannot teach us how to conquere this disease, your heart is in the right place thank-you for that but I am going to stay with my dr as she has more experience than you in this field. Don't be mad it's my life and my decision.
That being said I love to hear what is working for you and I think you should stay here awhile and share your experiences. If your only agenda is to teach us than it might not work but if you just share yourself and your journey with ovca you just might get some wonderful gifts in return.
Colleen0
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