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foxhd's picture
foxhd
Posts: 2180
Joined: Oct 2011

So many come to this forum. Seeking advice, information and to share experiences. This becomes a first person pipeline on collecting input about surgery, recovery, scans, drugs and lifestyle changes. Academic and emotional information is openly discussed... Cancer has such a huge impact on our lifes. I couldn't even spell blog. Now I am one. How many times have people said, "I have no one to turn to for support." or "My spouse/family/friends don't understand." This is a place where one can spill their guts to others who have similar experiences. Been there. Done that. It goes a long way... Friends we would have never met. Friends that have nothing else in common except kidney cancer. And friends with many like interests and lifestyles.I have to admit to being an extrovert here, but I am happy going days without having to talk to "live" people in real life. (I'll bet others hate the computer but can talk to 50 people just going out to buy bread)...So we express ourselves on the computer. Come and go when we want. Getting things off our chest. Meeting some need to open up a bit. Relieving stress and tension...It got me thinking. (all this dialogue just to get to my point.)...I have done it many many times. I have typed and typed. Written questions and answers. Only to erase it all when I was done. Maybe I wasn't clear. Maybe I missed the point. Maybe some negativeness popped up. Sometimes I know people get tired of hearing from me. And maybe expressing myself on the keypad was all I needed. 10 minutes later, it is cleared. No "Enter" key is struck. At least for this aspect of our lives, writing can be very therapeutic. We leave no trace that we've been here. Thinking,"Oh well, I'll hit enter next time." ...I know this is true. I can log on and see nothing happening, and then the next day someone gets the ball rolling and there are 20 new comments. I know that the longer we have been here, the less questions we ask. The longer we've been here, the more we answer. Just a curious observation. Also encouraging the lurkers to hit "Enter."

Cate1273's picture
Cate1273
Posts: 35
Joined: Feb 2014

Fox,

You are so right about seeking advice about surgery, scans, drugs and everything else. I did not find you all until well after my surgery, and then I lurked for awhile before hitting enter. I appreciate all the information that is shared here. It has made it easier for me to face all the challenges that have come my way. I don't think people get tired of hearing from you- keep it up. Thanks

 

Cate

 

adman's picture
adman
Posts: 272
Joined: Jul 2012

 

Since we have no 'Liked' button on this - Here it is :)

Well said!

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Yes indeedie... what the Fox man said...  I kno we all do a lot of good when a newbie shows up, all scared and like 10 of us reply with good thoughts, etc.  You can often see the good in their replies even if they do not come out and say it..  We all do a lot of good when like earlier today a Dr told their patient they have only 3 to 6 months.. we all know that is B.S.  But then we also get folks from other countries that do not have all the treatments we do here in the U.S.  sigh...

Not sure how many of you picked up on it.. but I have purposely kept one of my old posts going... I do that for two main reasons.. one to not just add more posts, but also because of the Wedge A Man...  I miss him so much around here...  so I keep that post going as his comments can stay with me.. and all of you...   Now he is a man that kept helping others, when he was down to his last few breaths..  sigh..  Hope he is making all his putts up there...!

Ron

garym's picture
garym
Posts: 1651
Joined: Nov 2009

I've hit the back button instead of submit dozens of times, sometimes just getting it out is all that is needed. I find the cyber-relationships we develop to be quite perplexing, to care so deeply for people I've never met, to wish I could hold their hand or give them a hug when needed just seems so odd. I guess we crave contact no matter what form especially from those with similar experiences, but in "real" life we form bonds with only a small percentage of the people we meet, here its 100%.

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Hmm.. I did something that maybe I shouldn't have done..  I looked at a couple of old posts here.. and clicked on the profiles of some folks we had not seen here in a while..  I then saw that a bunch have not been here in about a year... I just hope they moved on and are living happily...  I hope...

Be Well All...!!!

Ron

danbren2's picture
danbren2
Posts: 235
Joined: May 2013

I have a wonderful husband and a great family support system, but they do not have Cancer! I was a basket case, I was thinking of nothing but Cancer every minute of the day, and crying all the time, even waking my husband at night as he was trying to get some sleep.  He always did the right thing, got up held me and finally I would fall asleep cause I had cried myself out.  I couldn't even say the word Cancer without falling apart! Then someone told me about this site and I was able to read about others going through what I was going through.  And Fox is right, it was a while before I pushed the "enter" key.  I have found out that Kidney Cancer was not a death sentence there are plenty of us out here living and fighting this awful disease, and most importantly still living while fighting, all from reading post from this site!

The friends that I have made on this site are amazing, and are the best support system anywhere, mostly because no matter what we are going through, no matter what the emotion is, and no matter what the results are, they are here to give us love, support, and strength!

If you are at this site for the first time, press the "enter" key, ask your question, cry, get mad, compare, whatever you need you will get answers and support from some of the greatest people on this earth!! 

                                            Thanks for 24 hour support!

                                             Love, Brenda

Jojo61's picture
Jojo61
Posts: 703
Joined: Oct 2013

I agree with everything that everyone has said on this message from Fox. This is a remarkable, warm, caring, sincere, tireless bunch of people. I have grown to care deeply for all of you! I see such admirable traits from each person that shares their stories, insight, advice and fears.

I have started many messages and then pressed delete instead of enter. And sometimes I fear I have said things and revealed too much about my personal life! But I know for a fact, that if I met any of you in person, I would immediately connect with you. But I do believe that it is our common thread "RCC" that has bound us tightly together. It is true...unless you have had this or another form of cancer, it is difficult to truly comprehend the impact that cancer can have on you. Having this forum as a place to express ourselves is pure decadence - a luxury I don't want to be without!

And Fox!! We NEVER tire of your posts!!!

And to those lurkers out there - come in where it is warm.

Hugs,

Jojo

a_oaklee
Posts: 219
Joined: Nov 2013

This is a very interesting topic Fox....one that is going to haunt me for a few days I am sure.  Sometimes things I read here touch my heart, hit a nerve, cause sleepless nights, enlighten me, etc..  I lurked for a very long time.  I didn't know where to begin.  If I started, would I be able to stop.  Would I be understood?  I would assume that there are other caregivers, like myself, that aren't quite sure if they belong here.  ahhhhhh  enter or delete.....and I sat staring at this screen for awhile.  Submit won.

Srashedb
Posts: 322
Joined: Dec 2013

I understand the bond of those with this disease and I certainly hope that caretakers are included.

My husband does not go to any sites and it is always me who brings up the subject; we have a large and supportive family but they either don't discuss or don't understand that although he's been through many procedures and is regaining weight, he is at high risk for recurrence.

Our sons have their own lives and care very much but it doesn't impact them as it does me; so, it is a lonely place for this caretaker when it comes to husband's health.

We have a 41 year old marriage; I actually was young....so, the idea of not having my best friend, my rock terrorizes me. 

Having this place provides hope, answers and support; I have only been here since last summer but it does appear that the losses are few, even though heart-breaking.

TW was one of a kind, reaching out to help others even as his own health deteriorated. He carefully explained how his situation was different so that no one would lose hope. 

And, Fox, your posts are always of interest.

Sarah

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Sarah,

Caregivers are always welcome! In many ways the mental side of this trip is much harder than the physical and you deal mostly with that. As patients we have the disease and all that goes with it to occupy our brains thats mainly on the physical side of things and not facing the fear of losing someone we love on a daily basis and the need to stay strong and positive for them. What you go through is far more difficult and deserving of being here in my opinion. I think as everything is focused on the patient the importance of the caregiver can be overlooked, but not by us, you are our rock, our reason to fight. We appreciate all that you do for us more than you can ever know.

Thank you,

Gary

Srashedb
Posts: 322
Joined: Dec 2013

thank you, Gary; you have described our roles perfectly.

Sarah

I am alive
Posts: 262
Joined: Jul 2012

This forum is like crack (I suppose, never having tried it) - I love it, I need it, but I'm thinking it's not  really good for me. By that I mean I am constantly trying to wean myself off my daily, often several times a day, perusal. Two years this summer I wrote my first post.  I met Fox and Wedge and PJune and  ..oh forgive me, John's wife. Senior moment. I can't remember  your sign-on name. It 'll come to me as soon as I push the submit button. Oh, wait!!! Alice!!!!!

 

But today Wedge is gone and PJune disappeared in a way that makes us think she died suddenly of an unexpected serious side effect. She would never have drifted off, almost mid sentence, in the way that she did. I miss these people. ( I think we form special bonds with the folks who first greet us when we wash ashore here.) .Their absence makes me sad when I log in. Yes, Fox still waves the banner and I smile every time I see a post from him. Our warrior brother who takes no sh-- and dares us to do the same.  But I keep thinking I need to stop trolling so much and get out of the house and live more. (Easier to do once spring arrives.) I don't post much. I let others greet newcomers. I care about all you guys....otherwise why would I keep lurking? But I'm okay with peering over somebody else's shoulders. And I feel bad about that. Unbelievably generous Wedge contributed vital information and good cheer and positivity until he entered the hospital for the last time. He knew exactly what was happening to him but he chose to spend his energy helping others. I fall so far from his example. But we are who we are.

 

Tomorrow my finger will hover over the GO button as I try to convince myself once again to not  start the day with quick visit to the  KCSN. "Skip it today," I'll say to myself. "Dare you to check it once a week. Can you do that?" What do you think?

foxhd's picture
foxhd
Posts: 2180
Joined: Oct 2011

You are right, I am alive. Definitely miss Wedgie. We worked well as a team. He was so research and data oriented. I worked in health care for 35 years and no longer wanted to even think about medical studies. I tried to take it all in stride. My plan was to stay active, fit, and strong so my body could fight better. Unlike nano, I decided to enjoy every slice of pizza and glass of beer. I always said, "What am I saving "it" for? If I had a 3 piece suit, I'd wear it to mow the lawn. Enjoy whats left. I still live that way but my prospects keep improving so I'm gonna have to re-assess.

And you have no idea how much I miss Paula. She has not been here in over a year. She had sent me a pm saying that she just could not do it anymore. Breaks my heart. Love you Paula.

And sometimes I desire not to be so involved on this site. I really needed to be away after my IL-2 journey and took some time off. But I stay concerned and want to show others that there is hope . Also, I am like most people, I think. I seem to constantly think about having cancer. This forum allows the steam out of my pressure cooker and that is good. I used to be involved in a half dozen other sites of my interest. This is the only one now that I participate in.

Bellweather
Posts: 59
Joined: Jun 2013

Always lurking, never believing my comments are quite relevant,  quite the opposite of my non cyber life. 

 In the end this site ìs a second family and sometimes the only one that talks the same language as me.  Please keep posting. Most of your posts are pretty funny and serious at the same time. Pizza and beer also help every time!

angec's picture
angec
Posts: 708
Joined: Mar 2012

Fox, how can we ever get tire of your comments? Remember, Wedgie said you are our poster boy!  Well, I wonder what he would say now!  We love you dearly and you are so encouraging to us all!  We are very happy that you are doing well and hope to see the NED very soon!  I miss Paula too. In fact, right before she left she encouraged me! I was afraid to go for some tests and she talked me into it!  Going through her own hell but was concerne about me! What a gal!  I read one of her posts where she said she lurks and doesn't post. I am still hoping this is the case. Does anyone know her full name and where she lives? Maybe we can check up on her once and for all and see what the story is.  I am hoping she is ok.. Keep up those wonderful posts, Fox  We love you!  XX

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Hmmm.. been over 2 weeks, and nothing from DJ.. hope she is OK...  

And yes Caregivers are wonderful people...  Sometimes we forget you are not a patient, but very important to those you give care to.  Heck it may be worse on you than for the patient...  Hang around... this helps everyone..!

Ron

NewDay's picture
NewDay
Posts: 194
Joined: May 2012

I do appreciate all of you extroverts keeping the conversations going.  If it weren't for you the world would be a quiet, lonely place.  In other social situations and here, I enjoy listening to the conversations, but rarely speak up.  There was a time when I could have copy/pasted the post from I Am Alive.  At the time, I was finding that, between this site and ACOR, I would get to feeling really down. I asked myself if visiting here was causing me to think about cancer too much, but the truth is that I'm going to think about cancer every day whether I come here or not.  I find SP very helpful for information and some support, but if I spend too much time there, I can become overwhelmed by the realization that many with this disease are in dire straits, so I do limit my time there.  I strive to develop the ability that fox and others have to keep up a positive attitude even though cancer is often on their minds.

If I have to have cancer, I at least feel proud to be part of this group.  It made me feel good to see that, when a scared newbie recently posted, they got 20 replies in just one day.  I remember how important that was to me in the beginning.  I've rambled enough.  Thank you all for being here (extroverts and introverts).

Kathy

todd121's picture
todd121
Posts: 768
Joined: Dec 2012

I just wanted to admit to lurking.

I enjoy reading everyone's posts. I always enjoy yours. Please post.

I often can't think of anything helpful to say, or if I can, often I'm not sure it's correct. Sometimes I'm just lazy and don't feel like typing a response. I pop in and out often. I also want to admit that I can't keep up with all the new posts from people that have been around awhile, or the new posts from new(er) people.

It's great we have this forum. It's one of the few places I can go and feel like people understand what's going on with me in regards to my anxiety about my cancer. Nobody gets it like you guys. I'm sorry you're all here, but I'm glad I'm not alone.

Todd

APny's picture
APny
Posts: 486
Joined: Mar 2014

" I'm sorry you're all here, but I'm glad I'm not alone."

That is exactly how I feel. I'm so grateful for this forum. This has been terrifying for me and having others who understand what you're going through is a huge help. My husband is my rock but I don't want to constantly reveal to him how scared I am. I don't want him to obsess on this as much as I'm doing. So I put on a brave front but inside I'm terrified. And I know you all get that.

 

foxhd's picture
foxhd
Posts: 2180
Joined: Oct 2011

I feel the same way. I can't express how much I have gotten off my chest or how much I've been comforted for the 2 1/2 years I've been here. The most important message is that no one is alone. We know what it is to go thru diagnosis, surgery , drugs, complications and hope. I have been the person posting because I was going to die. Now I'm the person posting because I am living. There is no guarantee. Things may change quickly. I know that. I will be the cheerleader and supporter. And I may be the recipient of cheerleaders and supporters. We do this together. Which ever end we are on.

Makes me think that I'd rather be a member of the Moose club.

foxhd's picture
foxhd
Posts: 2180
Joined: Oct 2011

What the hell do they do anyway?  Don't bother answering. Just thinking out loud.

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