member participation

24

Comments

  • foxhd
    foxhd Member Posts: 3,181 Member
    foxhd said:

    there is a difference

    from moving forward and from biting the hand that feeds you. We all wish to return to our so called "normal" lives.  But it is nice to hear from you when you get the opportunity. So many have done well and have permantly moved on. Good for them. How nice to never worry about cancer again. Most of us unfortunately aren't so lucky. Sounds like you have your hands full. Yet you know that when you come back to see us, people express their concern.

    ignore this previous post

     "There is a difference" was supposed to be a private message.

  • angec
    angec Member Posts: 924 Member
    foxhd said:

    point is being proven

    Some days nothing is posted. Other days much more. Just bringing up a bit of controversy such as I did, resulted in 10 comments in 2 hours. Some agree and some are offended. (just wait until we hit 20 posts). And nothing was a question or answer about cancer. I only initiated dialogue and I got responses 180 degrees apart. For those without much to say, a heart felt "Good Morning" can be appreciated. Not everyone can comment on things like having just finished Il-2. Can't be expected to. But a sincere "Good luck" or "We are pulling for you!" can go a long way. I know that for me it is difficult to remember what recovery from surgery was like. It seems like a long time ago. Plus letting things go and moving forward is part of my coping process. So I think answers to those questions are best answered by people who have more recently experienced it. ie newbies.

    When there were questions Re: clinical trials came up, I had plenty to offer. Research went Nanos' or Texs' way. Tension relief went to Gary. ( who hasn't been here in a while because I'm sure he was beginning to not feel appreciated.) Then we have always had spouses here. They were always good for a hug for everyone despite not having kidney cancer themselves. They were here for us all. Not just their sig. other.

    I have hit some pretty low lows and high highs. My emotions have had a pretty good run. From not a chance in hell to survive, to watching tumors disappear like melting snow. Then to qualify for Il-2 and surviving the most inhumane treatment that can be given to a person. I had support, best wishes and  many held my hand as I endured the psychosis, weight loss, and altered physiology. For those with stage one or two, thank your lucky stars. Because surviving as a stage four can be so hard that death could have been a welcome option. ..But not for me. Because I'm pretty tough and had a forum full of supporters who continually helped  carry my load...I gotta tell ya, I don't see much of that these days.

    I have been told that that is  the nature of forums today. You search for information you want, then move on. Again the self centered culture of today. I just don't believe that is true. Not when nearly everyone who joins this site, does so out of desparation. Afraid of dieing. I don't believe that once support is given, it's "Hurray for me and screw you."

    I am just trying to say that anyone who joins this site does so because they don't know where else to turn. It can't be asking too much to pay it back. Share your experience, knowledge, and insight. It will be much appreciated. I have seen love generated here that runs full circle. What goes around, comes around. I know that I believe in Karma.

    Foxy how are you doing these

    Foxy how are you doing these days? Last i remember you had pain, was it in the neck area somewhere, possibly from the IL2?  I hope you are doing better. You sound like you can use a hug, some beer and pizza, and perhaps a nice, long ride! Too cold for that now!  Love you Fox!

  • foxhd said:

    ignore this previous post

     "There is a difference" was supposed to be a private message.

    foxhd, you can edit your own

    foxhd, you can edit your own posts.  There is an edit link, if click on it, you can delete the text.

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    Public forum

    I appreciate the sentiment that you expressed Fox.  I don't think that visitors to this site should feel like they owe something, nor should they apologize for not participating more.  I've never judged the extent of a persons involvement or lack thereof.  I have been concerned for the health and welfare of some of the visitors here.  I've always recognized it to be the public forum that it is, with few rules.  I am sure that there are thousands of reasons why some people don't have lasting involvement.  It doesn't make them any less in my eyes.  I don't view them as a taker and not a giver.  Unless you ask the specific individual the reason they are distant, you just don't know.

    i read a post here that greatly affected me.  The young man was advising people to not read anything posted by stage 3 or 4 patients.    That when he begins to read a post by an advanced cancer patient he stops.   He went on to say there should be a warning system so he could avoid THOSE PEOPLE.   Someone else said this is the fun site, and sick people should go to Smart Patients.   They were honestly sharing their feelings.  It doesn't mean it's easy to read.  I immediately joined smart patients.

    and then of course there are all of the stage one patients that are traumatized and horrified of getting mets.  I get it. I understand it.  I appreciate the fear.  BUT......I feel even more hopeless and doomed....every bodies biggest fear is to be us.

    Let us not forget all the people who cannot get through their depression.  Positivity is highly touted here.  Sometimes it feels like a requirement for The club.  I think people are trying to do the best they can at any given moment.  It saddens me when someone says they don't participate because they don't feel positive.  They actually apologize For being sad.

    I also look at some of the younger people, raising children, missing work, etc, who has time to get online and chat.  Maybe some of these individuals are trying very hard to get that damn song out of their head.....

    i am thankful to sites like this one and smart patients.  Please keep doing whatever you can do to take care of yourselves and your family first....then come visit here whenever you want to.  

     

     

  • I am alive
    I am alive Member Posts: 315
    So well put, Aoaklee. I agree

    So well put, AOkaly. I agree with much of what you outlined. But I understand Fox's frustration - I rely on his and other's input. I look for it. I open up chats sometimes just because I see that he or others have commented. Still,  I think such generous participation is in your nature, or not.  I often feel I have nothing much to contribute. I think most of us do the best we can, given our own issues and time constraints. 

  • Karen0074
    Karen0074 Member Posts: 64
    Fox you are right...

    When members are first diagnosed the blind panic sends them to post almost daily at first as this forum in the most supportive and active on the Internet, IMO.

    I got through those first weeks with yours Fox, Ron and icemantoo help. Thank you.

    As time has gone on and I had op and diagnosed stage 1 grade 2 ccrcc life has got easier and less need for support, selfish I know. Also because I am British and this is an american site I feel a bit out of my depth with the different ways in which we are treated by drs.

    I feel I can only be of assistance to newly diagnosed as I can relate to the terrible scary first few weeks after diagnosis. I am in awe of you oldies!

    I lurk most of the time now and love to see all your comforting comments especially fox and icemantoo and of course the wonderful Ron, who I miss dearly.

    thank goodness for all the posters who keep posting a long time after diagnosis, you keep this forum going. I promise to comment where I feel I can help.

     

    much love to you all

     

    Karen x

  • NanoSecond
    NanoSecond Member Posts: 653
    Personality traits are different

    My feeling is that whether or not one participates is largely based on one's temperment and personality.

    For example, I am an engineer by education.  I believe that "knowledge is power" and that you can't have too much of it.  For that reason I post far more on SmartPatients.

    Nothing makes me happier than to dive into a detailed research or scientific paper.  But then I try to translate what it says into a language that any layman would find helpful.

    But that's just me.  In the past, when I have tried to point out, for example, the advantage of paying attention to diet and nutrition (which, incidentally, can have far more benefits for Stage I or II patients - it's already too late for Stage IV patients like me) - I was occasionally met with resistance or even ridicule - as if I was "against" one having a nice beer and pizza to celebrate a happy occasion, etc..  This response did not bother me because I just go where the science leads.  I believe it is then up to each individual to make what they will of that knowledge.

    I miss the back and forth that I enjoyed with Texas Wedge - as we occasionally saw eye to eye but just as often did not. I loved that because it made me think even deeper.  That's why I came to this (and other) sites.  However, I acknowledge that perhaps many others can feel uncomfortable when there is any "dissention" or lack of round-the-clock "positvitiy".  I do hope I am wrong about that.

    I read each and every post here.  But I do not feel compelled to respond to any of them - unless I can make some sort of contribution that someone might find helpful.

    Just my 2 cents.

  • NewDay
    NewDay Member Posts: 272

    Personality traits are different

    My feeling is that whether or not one participates is largely based on one's temperment and personality.

    For example, I am an engineer by education.  I believe that "knowledge is power" and that you can't have too much of it.  For that reason I post far more on SmartPatients.

    Nothing makes me happier than to dive into a detailed research or scientific paper.  But then I try to translate what it says into a language that any layman would find helpful.

    But that's just me.  In the past, when I have tried to point out, for example, the advantage of paying attention to diet and nutrition (which, incidentally, can have far more benefits for Stage I or II patients - it's already too late for Stage IV patients like me) - I was occasionally met with resistance or even ridicule - as if I was "against" one having a nice beer and pizza to celebrate a happy occasion, etc..  This response did not bother me because I just go where the science leads.  I believe it is then up to each individual to make what they will of that knowledge.

    I miss the back and forth that I enjoyed with Texas Wedge - as we occasionally saw eye to eye but just as often did not. I loved that because it made me think even deeper.  That's why I came to this (and other) sites.  However, I acknowledge that perhaps many others can feel uncomfortable when there is any "dissention" or lack of round-the-clock "positvitiy".  I do hope I am wrong about that.

    I read each and every post here.  But I do not feel compelled to respond to any of them - unless I can make some sort of contribution that someone might find helpful.

    Just my 2 cents.

    I'll work on it

    When I first came here, I was scared to death.  I came here soon after diagnosis and several people brought me back from the cliff.  I then joined ACOR which has become SmartPatients.  Most people there are Stage IV.  We have felt the pain here of losing board members but it happens even more often there.  It scared me to death and I had to stay away from there.  But, then I became Stage IV.  After that happened, I first posted here and was flooded with people offering encouragement and I am forever grateful, but now I spend most of my time on SP because of the volumes of information about treatments and they also have emotional support there from people in my Stage IV shoes.

    As has been said, I think everyone is in a different place emotionally and physically.  I have never been especially “active” here except when I was in a state of panic.  Even in the non-cancer world, I just don’t say much.  I’m a quiet person. If we were all in a support group and in a room together, I wouldn’t be saying much.  I enjoy being with everyone and listening.  It’s just my personality.  Then, there is the fact that most times, I don’t feel very positive when it comes to cancer.  I know that everyone is quick to poo poo statistics and I agree when it comes to things like 5 year survival rates, but some statistics are valid.  Around half of people who get kidney cancer become Stage IV and once you are Stage IV, despite all of the advances in therapies, there is no cure (other than sometimes IL2).  Do you really want me coming here and posting that?  I don’t want to say what I’m thinking if it will scare people.  I have trouble comforting people and saying it will all be okay when often it won’t.  I feel disingenuous when I do.  I still visit here because I do care about the people and pray for many of them.

     When I get to a different place in my head, I will participate.  My mood changes day to day.  In the meantime, I will still check in to keep up with everyone.

     Kathy

  • Djinnie
    Djinnie Member Posts: 945 Member

    Personality traits are different

    My feeling is that whether or not one participates is largely based on one's temperment and personality.

    For example, I am an engineer by education.  I believe that "knowledge is power" and that you can't have too much of it.  For that reason I post far more on SmartPatients.

    Nothing makes me happier than to dive into a detailed research or scientific paper.  But then I try to translate what it says into a language that any layman would find helpful.

    But that's just me.  In the past, when I have tried to point out, for example, the advantage of paying attention to diet and nutrition (which, incidentally, can have far more benefits for Stage I or II patients - it's already too late for Stage IV patients like me) - I was occasionally met with resistance or even ridicule - as if I was "against" one having a nice beer and pizza to celebrate a happy occasion, etc..  This response did not bother me because I just go where the science leads.  I believe it is then up to each individual to make what they will of that knowledge.

    I miss the back and forth that I enjoyed with Texas Wedge - as we occasionally saw eye to eye but just as often did not. I loved that because it made me think even deeper.  That's why I came to this (and other) sites.  However, I acknowledge that perhaps many others can feel uncomfortable when there is any "dissention" or lack of round-the-clock "positvitiy".  I do hope I am wrong about that.

    I read each and every post here.  But I do not feel compelled to respond to any of them - unless I can make some sort of contribution that someone might find helpful.

    Just my 2 cents.

    Nano!

    Hey,

    I think on the whole people want to keep it real, who wants to be deluded . I remember when you pointed out to Twinnie she shouldn't be tucking into chocalate cake, she didn't want to hear it but within a short time was asking for your dietary info. I thought I had a pretty good diet but made more changes after reading your studies. I know at Stage 4 you say it's too late, but it's never too late to eat right. I think the weath of information you bring to the site is amazing. I used to like reading the discussions between yourself and Tex. I for one like people to be outspoken and no sugar coating, if it's bad news then it is what is is!

    Djinnie x

  • NanoSecond
    NanoSecond Member Posts: 653
    Djinnie said:

    Nano!

    Hey,

    I think on the whole people want to keep it real, who wants to be deluded . I remember when you pointed out to Twinnie she shouldn't be tucking into chocalate cake, she didn't want to hear it but within a short time was asking for your dietary info. I thought I had a pretty good diet but made more changes after reading your studies. I know at Stage 4 you say it's too late, but it's never too late to eat right. I think the weath of information you bring to the site is amazing. I used to like reading the discussions between yourself and Tex. I for one like people to be outspoken and no sugar coating, if it's bad news then it is what is is!

    Djinnie x

    Thank you.

    Many thanks for those kind words of support, Djinnie.  Yes, of course I agree that it is never too late to eat right.  What I meant to emphasize was that many Stage I, II, and III patients get spooked by the thought that they may be at some ill-defined risk to graduate into stage IV.  But if they eat right (and make a few other lifestyle changes) they can definitely reduce that risk.  And even if you are stage IV you can still reduce the risk of your tumors progressing:

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4209346/pdf/dmj-38-330.pdf

  • Djinnie
    Djinnie Member Posts: 945 Member

    Thank you.

    Many thanks for those kind words of support, Djinnie.  Yes, of course I agree that it is never too late to eat right.  What I meant to emphasize was that many Stage I, II, and III patients get spooked by the thought that they may be at some ill-defined risk to graduate into stage IV.  But if they eat right (and make a few other lifestyle changes) they can definitely reduce that risk.  And even if you are stage IV you can still reduce the risk of your tumors progressing:

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4209346/pdf/dmj-38-330.pdf

    Nano!

    Also Nano just a quick after note. I read about how you were doing earlier in the year, I am so glad you are now doing so well now:)

    Dj

  • foxhd
    foxhd Member Posts: 3,181 Member
    Djinnie said:

    Nano!

    Hey,

    I think on the whole people want to keep it real, who wants to be deluded . I remember when you pointed out to Twinnie she shouldn't be tucking into chocalate cake, she didn't want to hear it but within a short time was asking for your dietary info. I thought I had a pretty good diet but made more changes after reading your studies. I know at Stage 4 you say it's too late, but it's never too late to eat right. I think the weath of information you bring to the site is amazing. I used to like reading the discussions between yourself and Tex. I for one like people to be outspoken and no sugar coating, if it's bad news then it is what is is!

    Djinnie x

    participation

    Cancer or no cancer. Patient or caregiver. Every so often I stir up the bees nest. Just from this posting we have learned more about many of you than has been offered up in months or longer. That is the point. If people have time to visit here, then they have something to offer. Medical info, coping, healthy lifestyles, where and how to persue doctors or treatment plans. I could go on. And yes I agree that the internet allows anonymitity ?sp. The quiet ones still sit in the back of the room like in grammer school. People like me don't shut up even when asked to. Funny thing is that I am an introvert by nature. But by working in health care I have learned how to be outspoken and confident. I have been  a leader in the health care business. Yet I could go from friday after work until monday morning not speaking to a single individual. Quite the range of difference. You can be sure that in a couple months that I will bring up some other topic to get people involved. That is because this site is valuable to me. You see, I expect to be here until I join Tex,Ron, Blkjak, Cap'n Matt and others who have permanantly moved on. You see, if my cancer doesn't get me, the treatments, side effects and complications will. I will continue to defy the odds. But I don't belong here. I should be dead.  That is why I find this forum so important to me.

  • myoung790
    myoung790 Member Posts: 75
    Being new here, I would like

    Being new here, I would like to participate more.  I just feel that I don't really have much to offer.  I do try to offer encouragement when I can and as I learn more, I will do my best to continue to participate.

  • Scottie22
    Scottie22 Member Posts: 99 Member
    On this site daily

    Hi Fox,

    I understand where you are coming from and the degree of frustration that you mention.  I read this site daily and like all others who have written was shocked and saddened by the news of Ron's passing.  Oftentimes I want to comment and reply to posts but tend to defer to others who have much more, in my opionion, to offer. As it happens I have my 6 month follow-up appointment tomorrow (18 months since nephrectomy) and am feeling pretty uptight.  I also have another major surgery coming up in December (not kidney related) which is also on my mind.  I am always with you all and thinking of you just not finding the right words I suppose.  I do remember the replies I got to my first post after diagnosis, Djinnie and Iceman and others were right in there with support and encouragement which was so valuable and precious.

    Scottie

  • aamdsi
    aamdsi Member Posts: 284
    Feel bad

    I took some tome "off" and felt bad not being on here.  I was busy for one (had Granddaughter to chase/snuggle for a weekend) and guess just tried to put it all out of my mind for awhile.

    But...couldn't.  This site offers refuge, answers, hope, a smile and a tear and occasionally a good laugh.

    So - for better or worse, I am back 8-)

  • Ree_Maryland
    Ree_Maryland Member Posts: 161 Member

    foxhd, I am a newer poster. 

    foxhd, I am a newer poster.  I think more newer posters are contributing than you think.  I count myself, APny, Dave418, firedude21, and others as those that contribute.  Some are not comfortable sharing information, and others may not want to step on the more "experienced" members toes.  I try to answer when I have something to contribute.  I actually found this site AFTER my surgery, but I like to try to offer encouragement to those that are worried or scared prior to their surgery.  This is a wonderful community and support group.

    Posititive

    I agree with you , My daughter found this sight for me when I had RCC in right kidney had SURGERY ,i don't post much because I do not know what to say just this . This sight is wonderful and enccorges me and there is a lot of smarter ones out there that can answer lots os questions I had surgery in April doing ok so far, Sitll have aches and pains but I try not to worry ,Thanks ea and   everyoe who posts on here for your imput ,questons answered and encourgement. 

                                                                                                          Ree from Md

     

               

  • Karen0074
    Karen0074 Member Posts: 64
    foxhd said:

    participation

    Cancer or no cancer. Patient or caregiver. Every so often I stir up the bees nest. Just from this posting we have learned more about many of you than has been offered up in months or longer. That is the point. If people have time to visit here, then they have something to offer. Medical info, coping, healthy lifestyles, where and how to persue doctors or treatment plans. I could go on. And yes I agree that the internet allows anonymitity ?sp. The quiet ones still sit in the back of the room like in grammer school. People like me don't shut up even when asked to. Funny thing is that I am an introvert by nature. But by working in health care I have learned how to be outspoken and confident. I have been  a leader in the health care business. Yet I could go from friday after work until monday morning not speaking to a single individual. Quite the range of difference. You can be sure that in a couple months that I will bring up some other topic to get people involved. That is because this site is valuable to me. You see, I expect to be here until I join Tex,Ron, Blkjak, Cap'n Matt and others who have permanantly moved on. You see, if my cancer doesn't get me, the treatments, side effects and complications will. I will continue to defy the odds. But I don't belong here. I should be dead.  That is why I find this forum so important to me.

     Fox for you...

     image

  • Srashedb
    Srashedb Member Posts: 482 Member
    a_oaklee said:

    Public forum

    I appreciate the sentiment that you expressed Fox.  I don't think that visitors to this site should feel like they owe something, nor should they apologize for not participating more.  I've never judged the extent of a persons involvement or lack thereof.  I have been concerned for the health and welfare of some of the visitors here.  I've always recognized it to be the public forum that it is, with few rules.  I am sure that there are thousands of reasons why some people don't have lasting involvement.  It doesn't make them any less in my eyes.  I don't view them as a taker and not a giver.  Unless you ask the specific individual the reason they are distant, you just don't know.

    i read a post here that greatly affected me.  The young man was advising people to not read anything posted by stage 3 or 4 patients.    That when he begins to read a post by an advanced cancer patient he stops.   He went on to say there should be a warning system so he could avoid THOSE PEOPLE.   Someone else said this is the fun site, and sick people should go to Smart Patients.   They were honestly sharing their feelings.  It doesn't mean it's easy to read.  I immediately joined smart patients.

    and then of course there are all of the stage one patients that are traumatized and horrified of getting mets.  I get it. I understand it.  I appreciate the fear.  BUT......I feel even more hopeless and doomed....every bodies biggest fear is to be us.

    Let us not forget all the people who cannot get through their depression.  Positivity is highly touted here.  Sometimes it feels like a requirement for The club.  I think people are trying to do the best they can at any given moment.  It saddens me when someone says they don't participate because they don't feel positive.  They actually apologize For being sad.

    I also look at some of the younger people, raising children, missing work, etc, who has time to get online and chat.  Maybe some of these individuals are trying very hard to get that damn song out of their head.....

    i am thankful to sites like this one and smart patients.  Please keep doing whatever you can do to take care of yourselves and your family first....then come visit here whenever you want to.  

     

     

    my husband is stage 4, grade 2; a stage 2, grade 4 has a great chance of recurrence so am a bit troubled if some feels "safe" at being stage 1 or 2.

    as for this being a "fun forum", again troubled and it is somewhat contradictory to being freaked out by stage 3 or 4.

    in 1992, when i was diagnosed with breast cancer and the mother of 2 young sons, a breast cancer survivo/volunteer came to my hospital room and told me "this is not a death sentence" and told me she had been NED for 7 years, it meant more to me than any medical opinion or statistic of survival.

    that has stayed with me and what I tell anyone diagnosed with breast cancer; the devastation before processing that the very word carcinoma brings can be understood only by those who have experienced it.

    there is no obligation to give back but for me, I see it as something I want to do. I have learned so much about renal cancer from this forum and from smart patient.

    Positivity? It is not mutually exclusive to have that along with reality; the gut fear of the newly diagnosed can be softened just a little by reading of others.

    and, I enjoy the camaraderie here, the asking where someone is who has stopped posting.

    Early on, Ron was one of the first to respond to me with both his experience and the banter we all know so well.

    this is not a "club" requirement but if you have received it is natural to want to give back. And, if someone doesn't feel that, it's fine.

    just my thoughts 

    Sarah

  • foxhd
    foxhd Member Posts: 3,181 Member
    Karen0074 said:

     Fox for you...

     image

    must be a dirty picture

    ..and they blocked it Karen. I will use my imagination....hmmm....I like it!

  • Karen0074
    Karen0074 Member Posts: 64
    foxhd said:

    must be a dirty picture

    ..and they blocked it Karen. I will use my imagination....hmmm....I like it!

    Ha ha not dirty..

    ...I am British after all

    it was an emoji face blowing you a kiss!!