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Have you ever wondered...

stub1969's picture
Posts: 888
Joined: Jul 2016

who is on the other side of the screen when you communicate with people on this forum or the background of the person providing responses to your questions?  Over the past three years, I've often wondered these things about the people on here--in essence, I've wondered about you.  We're all bound by a common bond--RCC, but there is so much more about the lives of the people on here.  We often share the trials of upcoming scans or the fear of our diagnosis.  We also share our joys when we have a visit from Uncle NED, or of a successful surgery.  Most people are comfortable with this one-dimensional relationship, but is there more?  

Yesterday I had the wonderful opportunity to meet and spend time (face to face) with jazzgirl.  We spent time (over a couple of bowls of ice cream:) talking about our families, our travels and our journey with RCC.  I got to put a real face and a person to the happy avatar that we see each time she posts.  I have to tell you, she is about as caring and kind as you could imagine.   

I know meeting someone on this forum may not be for everybody and that's okay.  But, if you do choose to meet someone,  I promise it will add depth to the relationships you have with people on here....I know it did for me.

Thanks, Jazz.  See you next year.



BoondockSaint's picture
Posts: 242
Joined: Mar 2017

Yes......it is very rewarding. Pam and I had the opportunity to sit down and share a beer with Tapman and his girlfriend last year on our trip to New Orleans. We missed them this year as we were getting into town about the same time they were going on a trip but we’ll get many more chances I’m sure. 

Putting names with faces on message boards, like u say, may not be for everyone but I highly suggest it given the opportunity.

Posts: 567
Joined: Nov 2013

I joined here in the beginning of 2012, as a caregiver to my stage 4 husband.  The support and helpful information was phenomenal.  I got to know a number of people through the personal email section of this site.  We graduated to sharing our regular email addresses and I also met 2 couples in person.  Everything was great and wonderfully supportive until one by one the stage 4 buddies of ours have all passed away, one after the other, and we miss them so much.  It's very painful.  We took a break from getting involved with others.  It's so different to be Stage 4 on this site.  There are few, and we dont want to scare anyone.  I think this site is excellent for Stage 1 or 2, and usually Stage 4 people migrate to Smart Patients.  I think our participation  is now considered being old timers.   I try to not get involved too much with others on the personal side of things, but I am very willing to offer support, or info re our experience.  Wishing all a long and happy life.

CRashster's picture
Posts: 241
Joined: Mar 2017

I'm Facebook friends with several here, never met face to face.

Posts: 80
Joined: Aug 2016

I have never met anyone from here but have met people thru business casually that have had different cancers and have always connected with them like I have never connected with any one else. To me it seems odd but the only people I have ever been able to connnect with that had rcc was on this forum. 

Posts: 80
Joined: Aug 2016

I have never met anyone from here but have met people thru business casually that have had different cancers and have always connected with them like I have never connected with any one else. To me it seems odd but the only people I have ever been able to connnect with that had rcc was on this forum. 

jazzgirl's picture
Posts: 198
Joined: Nov 2017

Hi Stub and All,  I haven't been on here for a few days so I just saw your lovely comments. It was a wonderful treat for me to be able to meet and talk. A little intimidating when we only know someone through the photo and a few words, but it couldn't have been a more fun, interesting, and blessed hour. I'm so glad to hear you say "next year" - I'd sure like to make it a regular part of my scan-land trip. Take care All -

AnnissaP's picture
Posts: 632
Joined: Sep 2017

Great post. I would like to have met you all face to face!! We are more than RCC :)

Dominick0711's picture
Posts: 94
Joined: Jan 2019

There is no doubt the  bond we all share being RCC survivors and/or fighters is just one piece of what connects us.  In this day and age, politics completely aside, the world could benefit from more face to face interactions between people who spend most of their day communicated behind a phone or a computer.  It reminds us of the common humanity we all share, which helps us be better and kinder people to others and maybe realize we are more like others and share more with others then we sometime are led to believe.  I would love the opportunity to meet people on this board. Maybe we should set up reginoal disucssions that could lead to group meetups in major cities were we have a concentration of members.  

Cinnamongirl's picture
Posts: 199
Joined: Jan 2018

That is fantastic! I have a few of you on fb and talk to a few via phone calls but never met face to face!


JoeyZ's picture
Posts: 210
Joined: Mar 2018

That is awesome you two got to meet! I just love it. I had the great honor of meeting a Smart Patients buddy back in Feb. and it was great. I tend to be a little shy or held back at first but this was so easy and not really any ice to break and it was great fun.

Having said that, I hope the poster who said this forum is for stage 1 or 2 people and that stage 4's belong on Smart Patients isn't correct. This would mean I have to leave, as I'm stage 4. I don't plan on going anywhere for a long time, I hope. Stage 4 people just die, so go away is what I take from their statement. I hope I'm wrong.

Posts: 567
Joined: Nov 2013

Please read what I wrote again.  You are misunderstanding and misinterpreting my meaning.   Im sorry that you misunderstood.  Let me try again.

I think this site is great for any stage of RCC.  It is my opinion that Stage 4 really needs additional help from fellow patients and caregivers on Smart Patients.  There are more Stage 4 patients there, than here.  Many people belong to both sites, and that is the best way to participate.  I do personally believe that a person newly diagnosed at stage 1 or 2, might have a very difficult time coping with reading about advanced disease.  

Let me assure you there are many people living a long time at Stage 4.  My husband was diagnosed stage 4 in january of 2012.  He is doing very well.   We have lost many Stage 4 friends in the past 7 years.  I miss them terribly.  

I hope you find comfort and knowledge and friendships on both sites.  Please feel free to write a personal email to me if you wish.  It might be better.  

Best wishes for a long and happy life.

eug91's picture
Posts: 317
Joined: Jan 2019

This is great, stub. So many wonderful folks on this board. 

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