member participation

foxhd
foxhd Member Posts: 3,181 Member

Just a vent.

I've been here 3 years now. I came here like most of us do. I had questions. Needed answers. Once I got them I didn't abandon this site. I shared my experience and progress with those that helped me out. And those newer than me who I was able to help. My testing, biopsies, surgery, information on clinical trials were reported on. I was able to share that which was fresh in my mind. Not so fresh anymore.... But those things are much more fresh to all the members who have joined here since then.

However, When newbies come along with basic needs, most of the support offered is from members who have been here a long time. Why is the participation from newer forum members so poor? Dozens read this site everyday. Yet few participate even monthly. For example, I'll bet that over the course of a week only 10-15, people start or answer a post.(and that estimate is probably high)  However when our beloved member Ron passed away, we had nearly 50 members submit a post in 4 days. We all loved and will miss Ron but where is everyone day to day?

Folks we do this together. Everyone has something to share. Information like, "When can I exercise? Incision vs lap? oncologist vs urologist? clinical trial vs approved drugs? stage 3 vs stage 4. And let's not forget humor. We've had people voice complaints about our jokes. Thinking they are inappropriate on a cancer site. And that is their only post in weeks or months. Sometimes people who joined this site did well and disappeared. 6 months or a year later when things may have changed, they are back. Not to share optimism but to pick up where they left off. Asking us for help.

We will all dearly miss Ron. Anyone who has not watched the video interview of him is missing what a true friend is. Ron cared about others. Ego-centric he was not. Ron was always sharing information, offering advice, and lifting others spirits all the while he was suffering from complications from his own cancer. Karma folks.  Ron was probably our leading poster. But no more. I am sure he would love to see all our lurkers pick up the slack in our forum participation. In about a years time we lost not only Ron but we lost Texas Wedge.  I think that because of the effort that they both provided, this has been one of the most active and beneficial cancer forums for its members. There used to be a commraderie that was almost palpable. Yet one of the most common complaints that I read here is about people not having a support system, or being alone, or not having friends or family that understand. Some close friendships have developed here due to active participation.  But not recently. I don't get it. I thought that we were all in this together.

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Comments

  • angelsnls
    angelsnls Member Posts: 67
    members

    Hi foxhd I hope that I will still be a participating member of this site for many years to come, I am sorry that I did not know Ron he sounds like a really wonderful guy, it will be nice getting to hopefully meet a lot of new friends and hopefully helping with any advice I can. There is nothing better than a few jokes for making people laugh and it helps cheer others up. 

    Take care and look forward to getting to know everyone on this site x

  • 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.

  • sblairc
    sblairc Member Posts: 585 Member
    It's complex.

    I think you pose some interesting questions, and they inevitabley correspond to complex, highly individualized answers, depending on different people's experiences. My opinion is that most people don't come here to help others. Sorry, but it's probably true. I just don't think everyone has that ability or comes here with the mindset of "helping others" and I think it can be difficult for some people to feel like they have the time, energy, capability, or knowledge to put forth for others. And I totally get it. 

    I also think that it's the nature of social media in general, message board culture so to speak. It's that condition of anonymity that makes it easy for people to float in an out of partipation online, whether it be Twitter, Facebook Groups, etc. This is sort of unfortuante, but very much the nature of the beast in my opinion. 

     

    Me, personally: I was in a dark place dealing with my husband's cancer.  Very, very dark. I came here and found help and it made me want to stay and help others. But my husband doesn't have cancer anymore. And I don't know if I could be here regularly if/when it ever comes back. So I guess others probably have experienced that as well, and dropped off to lurk, etc. Some may evern move on to Smart Patients only, for that matter. Who knows. All I know is that Ron's death for me, being here since February hit me hard and I've been here since February. It makes me think twice about forming connections here, for my own metal health. But I doubt at the end of the day it will change for me. Like John Wayne said "Courage is being scared to death, but saddling up anyways. " Just saddle up, keep living, and try to help others. 

     

  • telephantasm
    telephantasm Member Posts: 14
    Member participation

    I hear ya foxhd. I guess it's a comfortability thing for some. Me bein one of the newbies to this site. I am still continuing to learn in hopes of making some valid contributions to this site as I go through this process myself with my father's diagnosis. I can definitely offer a supportive ear to many. This is still relatively fresh for me. But this site we'll continue to offer me hope through all the posts I read as I further enhance my knowledge base with regards to kidney cancer. There is a lot of valuable information to be learned via these posts. I will share information as things come available to me. 

    What is a good dietary regimen out there (has anyone vastly changed their diet?), any natural products out there that can aid in the fight

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    Hey Foxy,
    Thank you for

    Hey Foxy,

    Thank you for putting into words, what I have been thinking about the last couple of months. I joined October of last year, so was not fortunate to get to know Texas Wedge, but felt everyone's pain when we lost him. This year I have gotten to know many people here - a wonderful group. People that I think of every day and say a little prayer for every night. And I know that so many of the other members are doing the same. Family.  I sense a few dropouts and do feel some sadness about it, but understand that it gets hard to be on this site all the time. But everyone needs to know that this group needs some maintenance - TLC, if you will. I cannot tell you how hard Ron's passing has hit me. I have only known him for one year. But I could honestly feel his goodness ooze out through his words of support and humour. I had to stop posting things about his passing because I think I was starting to look a bit "stalker-ish"! I want to console everyone and share their pain, as I have so much pain that is difficult to share with people in my non-virtual world. He deserves proper tribute. We are family of a different kind. But it is a wonderful, warm family.

    I worry about you, most of all in this loss, as I believe you and he (and a few others) were close to each other and had similar morals and big hearts. I am glad you voiced your opinion today. :)

    Hugs

    Jojo

     

  • APny
    APny Member Posts: 1,995 Member
    Jojo61 said:

    Hey Foxy,
    Thank you for

    Hey Foxy,

    Thank you for putting into words, what I have been thinking about the last couple of months. I joined October of last year, so was not fortunate to get to know Texas Wedge, but felt everyone's pain when we lost him. This year I have gotten to know many people here - a wonderful group. People that I think of every day and say a little prayer for every night. And I know that so many of the other members are doing the same. Family.  I sense a few dropouts and do feel some sadness about it, but understand that it gets hard to be on this site all the time. But everyone needs to know that this group needs some maintenance - TLC, if you will. I cannot tell you how hard Ron's passing has hit me. I have only known him for one year. But I could honestly feel his goodness ooze out through his words of support and humour. I had to stop posting things about his passing because I think I was starting to look a bit "stalker-ish"! I want to console everyone and share their pain, as I have so much pain that is difficult to share with people in my non-virtual world. He deserves proper tribute. We are family of a different kind. But it is a wonderful, warm family.

    I worry about you, most of all in this loss, as I believe you and he (and a few others) were close to each other and had similar morals and big hearts. I am glad you voiced your opinion today. :)

    Hugs

    Jojo

     

    “My opinion is that most

     

    My opinion is that most people don't come here to help others. Sorry, but it's probably true.”

     

    Sblairc, yes, I agree that you are probably right. I also came for answers and support but once I received it and recovered from my surgery I wanted to be able to do the same for others. And so I've stayed. Often I find that I can’t say much that's helpful because fortunately for me, mine was a stage 1 cancer and sadly, many who are seeking answers and support are at a much more serious stage. I’m not arrogant or foolish enough to think that can’t happen to me in a year or two or ten, but right now, I am not much help to those seeking advice on treatment options for mets, etc. Still, I try to contribute as much as possible when appropriate. And while I’ve not even been here a year, Ron’s death hit me very hard as well. He was amazing in his compassion, spirit, and sense of humor.

     

  • thaxter
    thaxter Member Posts: 124
    Guilty as charged

    I've been here about a year, but in terms of treatments I am kind of a newbie.  Nephrectomy in Sept 2013, found lung mets in January and had IL-2 in March and July.  A couple of weeks ago with the third scan indicating progression I was put on Votrient.

    I do tend to comment about things I've experienced--radical open nephrectomy and IL-2--but I am just getting started with targeted drug therapy.  Most of the time I am reading this forum on my phone so writing long replies is not easy.  

    Ron's death really shook me--so much so that I couldn't bring myself to post anything meaningful.  He was a role model for many of us I suppose in how he dealt with cancer and hearing that he ultimately lost the battle scared the bejeebus out of me.

  • Skagway Jack
    Skagway Jack Member Posts: 224 Member
    Valid criticism

    Fox,  Your point is valid. I have been less participatory than usual myself.  I could move on altogether, but for the fact that when I was given my second chance by my surgeon I wanted to be able to pay it forward in anyway I can which might include helping someone on this forum.  We all go through this in our own unique ways, but the experiences are similar.  Ron contributed a great deal here and his shoes will be hard to fill.  Some of the anguish felt by the folks here will take some time to heal. 

             Some of us stage 1 folks feel unequipped to add to some of the threads.  Providing some humour or positive stories would be step in the right direction.  I for one, will endeavor to be a bigger contributor going forward. 

    Jack

     

     

  • Srashedb
    Srashedb Member Posts: 482 Member
    angelsnls said:

    members

    Hi foxhd I hope that I will still be a participating member of this site for many years to come, I am sorry that I did not know Ron he sounds like a really wonderful guy, it will be nice getting to hopefully meet a lot of new friends and hopefully helping with any advice I can. There is nothing better than a few jokes for making people laugh and it helps cheer others up. 

    Take care and look forward to getting to know everyone on this site x

    Fox:
    you always start

    Fox:

    you always start interesting discussions; I agree that this forum should be questions, answers/experiences, information sharing.

    i came here because of my husband AND because when I was dealing with breast cancer in the '90's, the exchanges were so helpful and because giving back is such an opportunity.

    sometimes, i have refrained from sharing because the person is just at the beginning of this with some not-so-great facts and despite the naivete, who am I to impart information.

    I love this board so will commit to sharing more.

    How are you doing, Fox?

    Sarah

  • dhs1963
    dhs1963 Member Posts: 513
    I had not been here in a while

    I kind of just decided to come here today...I had not been here in a long time.  For me, kidney cancer is becoming secondary to my life.  I plan to be here a long time, I am still young, and I have been really busy lately with work.  I have three companies trying to buy my services.

    Clearly, the cancer is never far from me.  I am always feeling pain at the site of the nephrectomy, and neuropathic pain from the wedge resection, but I am lucky so far.  I have not required any systemic treatment.

    Maybe I should hang around more, as I can help the newly diagnosed understand what it means.

    When I was diagnosed Stage 1V (two years ago), I had one real goal:  to be around for my daughters Bat Mitzvah....that is in about 5 months.

    And I am thinking more long  term.  

  • Billy's Wife
    Billy's Wife Member Posts: 52
    Hi Fox,
    So good to hear a

    Hi Fox,

    So good to hear a real person voice their true feelings in this world of the politically correct!  I could sense your frustration.  I can only answer for myself.  I came to this sight a year after my husband passed away.  I was searching the web for ways to use all the information we had learned over the 8 years and 3 months that we walked this walk, in order to help someone else.  I have shared a little in the past year but my husband lost his battle.  That fact left me in a very precarious position.  Though i know somethings I do not want to bring anyone down.  I visit occasionally as a lurker mostly.  I have become attached to some of the people on this sight and am praying for all of them.  I am just not sure where I fit in.  I told you in past posts that I thought my husband would have liked you very much.  He was a very strong fighter.  He did all that he could have done to stay.  He had surgery and radiation and IL2 and stereotactic radiosurgery and a hip replacement so he could undergo more radiation.  He was on sutent and then participated in a clinical trial in India just to try to stay here longer.  Today marks 2 years when we went to his neurologist for a plan on how to tackle his latest brain mets.  It was a very difficult day.  I knew he didn't have much more time.  He was just 60 but on that day he looked much older than his real self.  He passed just one month later to the day. 

    So this sight makes me relive maybe what he should have done or could have done that we didn't think of or know of or ask about.  You have all helped me remember that it didn't only happen to him or us but it is still happening every day and I wish I could find a way to make the reserachers feel the pain on this sight and work harder.  Cancer really does suck!  It makes me more frustrated because it seems that kidney cancer and the dollars spent on it now are where breast cancer and the dollars spent on it were 21 years ago when breast cancer stole my mother at just 63.

    So you see, my stakes are high.  I lost the two people I was closest to, to cancer too soon.   All of you on this sight have inspired me but I am still searching for a place to fit in.  I keep hoping it will come to me somehow.  I wish I could help but I'm not sure that I can.  I have learned in my grief that many people cannot handle many of life's sorrows so they leave.  I have lost some very dear friends because they don't or can't GET it.  I think it is true that unfortunately many people aren't really interested or concerned with helping others they are searching for themselves and that is all that even occurred to them to do.  If I can help anyone send me an email and I'll try.  Thank You Fox for your strength and honesty.

    Arleen

     

  • Phredswife
    Phredswife Member Posts: 162
    I appreciate you all!

    Just to say I appreciate everyone who posts and think of all of you often. I don't always know what to say to new people on the forum. We are in a really weird headspace at the moment. I paid so much attention to what was going on with Phreds cancer diagnosis I missed noticing our daughter starting to go downhill through it all. Keep an eye on your children everyone. Extended levels of stress are no good for anyone.

     So grateful for everyones honesty and for being there for us when it was needed at the beginning. It is a very scary time to be told you or someone you love has cancer. Love to you all and please keep posting. I will try to more as well

    Hugs Melissa

  • sblairc
    sblairc Member Posts: 585 Member
    Good dialogue on the subject. Thanks everyone

    Thanks for the post, Fox. This is a good productive dialogue. This is a pretty active board on here, compared to some of the others. Go browse, you will see some are pretty quiet. I think we are luck to have each other, even if it is't as much as it could be. 

  • angec
    angec Member Posts: 924 Member
    I guess people have various

    I guess people have various reasons for being here or not being here. I, myself have been on smartpatients most of the time.  I come here once in a while to see how others are doing that did not join smart patients.  But for myself, i now have three family members  and several friends with cancer and it has become a little overwhelming for me.  I don't really have the time to be regular but try to pop in when i can and offer advice.  On a side note. My mom had a great last scan. NED.. was unreal. Still on Votrient which will be two years in December. She is on the 200 mg dose.  Ron will be missed. I had regular contact with him on SmartPatients.com.  Came as  a complete shock and no one knows what went wrong, except that maybe he had a blood clot, that is not confirmed.  You always bring up good points, Foxy. We need to be here for each more often.  I will work on that!

     

  • foxhd
    foxhd Member Posts: 3,181 Member
    dhs1963 said:

    I had not been here in a while

    I kind of just decided to come here today...I had not been here in a long time.  For me, kidney cancer is becoming secondary to my life.  I plan to be here a long time, I am still young, and I have been really busy lately with work.  I have three companies trying to buy my services.

    Clearly, the cancer is never far from me.  I am always feeling pain at the site of the nephrectomy, and neuropathic pain from the wedge resection, but I am lucky so far.  I have not required any systemic treatment.

    Maybe I should hang around more, as I can help the newly diagnosed understand what it means.

    When I was diagnosed Stage 1V (two years ago), I had one real goal:  to be around for my daughters Bat Mitzvah....that is in about 5 months.

    And I am thinking more long  term.  

    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.

  • AprilandChuck
    AprilandChuck Member Posts: 110
    I am guilty

    I am guilty.. as the kids in our life started to grow and grow up( we have many.. our own, ones who were friends with out daughter who passed, and ones who passed through our lives when they needed help).. we would go long periods of time without hearing from them...when they would pop in or call... I was never angry.. I always told them "That life gets in the way of life" meaning sometimes we get so busy dealing with what comes up.. we for forget to check in.. and its ok... because life has a way of doing that.. its no excuse its just truth... Dealing with Chuck and my Mom... )first uncontrolled Diabieties then advanced small cell lung cancer with Mom) and continuing to deal with Chucks Cancer and various issues with other family members and our children.. time went by way to fast... and I should have checked in sooner... I can not promise I wont loose track of time again... but I can say I will try to do better!! Since Chuck first got sick this site and all who pariticipate here have been a huge comfort... and I am sorry I let you all down! Hugggssss

     

    p.s. Chuck is 1 year and 4 month on the maintance phase of the Phase 1 Anti PD1 plus Ipi trial... his next scans are Nov 25th... at his last scan he had a Lymphnode that changed shape... prior to that he was stable disease and had at least 1 NED scan!! That gave me time to deal with whats going on with Mom...since she would not move to NC that involved a large amount of travel.. between here and Pa... taking care of her and being here for Chucks scans and infusions... then My Aunt who was helping got worse she has severe COPD with Heart issues... so we had to get her to a specialist.. and the cherry on top of our Sunday.. My Cousin who is 47 years old and was also helping me with Mom had a heart attack in her widow maker... she is stinted and recovering... but not out of the woods yet..  I thank God everyday that Chuck has the team at Levine looking out for him and all of us!! they have been a God send to us!!

  • mjl66
    mjl66 Member Posts: 8

    I am guilty

    I am guilty.. as the kids in our life started to grow and grow up( we have many.. our own, ones who were friends with out daughter who passed, and ones who passed through our lives when they needed help).. we would go long periods of time without hearing from them...when they would pop in or call... I was never angry.. I always told them "That life gets in the way of life" meaning sometimes we get so busy dealing with what comes up.. we for forget to check in.. and its ok... because life has a way of doing that.. its no excuse its just truth... Dealing with Chuck and my Mom... )first uncontrolled Diabieties then advanced small cell lung cancer with Mom) and continuing to deal with Chucks Cancer and various issues with other family members and our children.. time went by way to fast... and I should have checked in sooner... I can not promise I wont loose track of time again... but I can say I will try to do better!! Since Chuck first got sick this site and all who pariticipate here have been a huge comfort... and I am sorry I let you all down! Hugggssss

     

    p.s. Chuck is 1 year and 4 month on the maintance phase of the Phase 1 Anti PD1 plus Ipi trial... his next scans are Nov 25th... at his last scan he had a Lymphnode that changed shape... prior to that he was stable disease and had at least 1 NED scan!! That gave me time to deal with whats going on with Mom...since she would not move to NC that involved a large amount of travel.. between here and Pa... taking care of her and being here for Chucks scans and infusions... then My Aunt who was helping got worse she has severe COPD with Heart issues... so we had to get her to a specialist.. and the cherry on top of our Sunday.. My Cousin who is 47 years old and was also helping me with Mom had a heart attack in her widow maker... she is stinted and recovering... but not out of the woods yet..  I thank God everyday that Chuck has the team at Levine looking out for him and all of us!! they have been a God send to us!!

    Greatful for you

    I'm new, and here for my husband who was recently diagnosed. Let me restate that, I am infact on this site for the both of us, we are both going through this together.  In the short amount of time that I have been here you have all helped me greatly.  I know that I am not alone, and that others understand the pain and frustration in dealing with this illness.

    I really don't know what I have to offer at this point, but I am greatful for all of you, you are appreciated.

    MJ

  • foxhd
    foxhd Member Posts: 3,181 Member

    I am guilty

    I am guilty.. as the kids in our life started to grow and grow up( we have many.. our own, ones who were friends with out daughter who passed, and ones who passed through our lives when they needed help).. we would go long periods of time without hearing from them...when they would pop in or call... I was never angry.. I always told them "That life gets in the way of life" meaning sometimes we get so busy dealing with what comes up.. we for forget to check in.. and its ok... because life has a way of doing that.. its no excuse its just truth... Dealing with Chuck and my Mom... )first uncontrolled Diabieties then advanced small cell lung cancer with Mom) and continuing to deal with Chucks Cancer and various issues with other family members and our children.. time went by way to fast... and I should have checked in sooner... I can not promise I wont loose track of time again... but I can say I will try to do better!! Since Chuck first got sick this site and all who pariticipate here have been a huge comfort... and I am sorry I let you all down! Hugggssss

     

    p.s. Chuck is 1 year and 4 month on the maintance phase of the Phase 1 Anti PD1 plus Ipi trial... his next scans are Nov 25th... at his last scan he had a Lymphnode that changed shape... prior to that he was stable disease and had at least 1 NED scan!! That gave me time to deal with whats going on with Mom...since she would not move to NC that involved a large amount of travel.. between here and Pa... taking care of her and being here for Chucks scans and infusions... then My Aunt who was helping got worse she has severe COPD with Heart issues... so we had to get her to a specialist.. and the cherry on top of our Sunday.. My Cousin who is 47 years old and was also helping me with Mom had a heart attack in her widow maker... she is stinted and recovering... but not out of the woods yet..  I thank God everyday that Chuck has the team at Levine looking out for him and all of us!! they have been a God send to us!!

    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.

  • Djinnie
    Djinnie Member Posts: 945

    Hi Fox,
    So good to hear a

    Hi Fox,

    So good to hear a real person voice their true feelings in this world of the politically correct!  I could sense your frustration.  I can only answer for myself.  I came to this sight a year after my husband passed away.  I was searching the web for ways to use all the information we had learned over the 8 years and 3 months that we walked this walk, in order to help someone else.  I have shared a little in the past year but my husband lost his battle.  That fact left me in a very precarious position.  Though i know somethings I do not want to bring anyone down.  I visit occasionally as a lurker mostly.  I have become attached to some of the people on this sight and am praying for all of them.  I am just not sure where I fit in.  I told you in past posts that I thought my husband would have liked you very much.  He was a very strong fighter.  He did all that he could have done to stay.  He had surgery and radiation and IL2 and stereotactic radiosurgery and a hip replacement so he could undergo more radiation.  He was on sutent and then participated in a clinical trial in India just to try to stay here longer.  Today marks 2 years when we went to his neurologist for a plan on how to tackle his latest brain mets.  It was a very difficult day.  I knew he didn't have much more time.  He was just 60 but on that day he looked much older than his real self.  He passed just one month later to the day. 

    So this sight makes me relive maybe what he should have done or could have done that we didn't think of or know of or ask about.  You have all helped me remember that it didn't only happen to him or us but it is still happening every day and I wish I could find a way to make the reserachers feel the pain on this sight and work harder.  Cancer really does suck!  It makes me more frustrated because it seems that kidney cancer and the dollars spent on it now are where breast cancer and the dollars spent on it were 21 years ago when breast cancer stole my mother at just 63.

    So you see, my stakes are high.  I lost the two people I was closest to, to cancer too soon.   All of you on this sight have inspired me but I am still searching for a place to fit in.  I keep hoping it will come to me somehow.  I wish I could help but I'm not sure that I can.  I have learned in my grief that many people cannot handle many of life's sorrows so they leave.  I have lost some very dear friends because they don't or can't GET it.  I think it is true that unfortunately many people aren't really interested or concerned with helping others they are searching for themselves and that is all that even occurred to them to do.  If I can help anyone send me an email and I'll try.  Thank You Fox for your strength and honesty.

    Arleen

     

    I'm on board!

    Thanks for caring and sharing Fox! When I joined early last year the site was always so active, questions, advice, detailed medical information, Gary's crazy jokes and banter, and that which Texas referred to as the not so relevant fluff. I loved the jokes and took comfort from the fluffy stuff, it took the pressure off the more serious problem for a short time.There was a marked change after Trevor died, it was a painful time, he was like the oracle and of course now sadly Ron, they have left a big gap. Their dedication to this site along with several others like you Fox created a unique place for information and much needed comfort and support.

    I love the people on here and have made some good friends. All the time I am fighting this blight of a disease this will remain my go to place, and am happy to offer any support I can even if it is only fluff:)

     

    Djinnie x

     

  • brea588
    brea588 Member Posts: 240
    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.

    you are so right

    In every thing you have said.  When I was first diagnosed with kidney cancer 2 years ago and I found this forum I was so happy that there was people here who had already had surgery and could tell all about it.  My fears was calmed here and I thank everyone from the bottom of my heart.  I post occasionally just updates on what is going on with me and my battles still, but as I reflect, that is very selfish of me and I apologize.  I think of you all everyday and your in my thoughts.  I will try to do better.  I owe this forum that much to repay and help the new ones who come on board.  Thanks for opening my eyes.  Hope you are doing better Fox.