member participation

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

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. 

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

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.

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 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

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

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. 

AprilandChuck said:

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!!

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

Billy's Wife said:

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

 

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