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foxhd's picture
foxhd
Posts: 1899
Joined: Oct 2011

All I want to say is that I know some people are either intimated, or feel like they are breaking into a "click" of some sort on this forum. (I did). Please don't. Interact and share your perspectives. As I have recently read, only 3% of cancers are kidney cancers. We are a select group. All supportive. Pulling for each other. I can't tell you how much others experiences bolster my drive to do well and I want to return the Karma to others. Just interacting on this board has added numerous friends that I know understand me. And care. I am sure I speak for all active members when I say, " How You Doing?" Keep us posted. Keep us informed. And share your experiences. Lets do this battle together.

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

I have never felt intimidated but at the same time my lack of grammar skills have kind of held me back.Cancer breaks all of our hearts equally so thank you so much.

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

Limelife, I hope the last thing anyone cares about is grammar or spelling. Good Lord, that would be the last of our worries here, so post away! Please! Everyone is welcome here.

Blessings,
Lisa

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

Great post, Fox! Love it! I know what you mean and normally, I do feel like an outsider when I first begin posting at a new forum, but everyone here made me feel so welcome, that I really did feel at home almost instantly.

I only worry that sometimes my humor may offend some as they may wish this place to be more serious, as the subject is serious. I hope I haven't and don't offend anyone. For me, laughing and joking keeps me going, keeps things light hearted and keeps me from getting down. I love to laugh and love to see other's posting jokes or funny comments as well. So I just want to say, if someone is going through a particularly rough time and I offend anyone, I don't mean to.

Blessings,
Lisa

dl650a
Posts: 31
Joined: Feb 2012

I'm one of the newer members here (unfortunately). However, I do not feel like I'm pushing my way in. My surgery is in two weeks and I've been able to see what other people have gone through. This is giving me a better idea of what to expect.

Thank you all for sharing.

Ed

Michael6701
Posts: 26
Joined: Sep 2011

I have had several non-cancer issues resulting in numerous surgeries before my RCC diagnosis, so I have had occasion to look in on other such forums. I want to congratulate the participants to this particular forum for being different.

All such forums initially draw those that are facing a frightening and uncertain experience who are looking for insight and reassurance from people who have had in-common issues that have been successfully cured/fixed. But people that have successfully corrected their problems generally leave those forums and go on with their lives. Only those with unsuccessful results hang around to reflect upon their failed or difficult treatment. The result is that those forums only dispense fear based upon the most extreme results.

I am impressed that on this forum there are a lot of good people that, even though they have apparently recovered, are still here dispensing that valuable insight and reassurance to those in need.

One Lucky Girl's picture
One Lucky Girl
Posts: 68
Joined: Feb 2012

Hi Fox,

I've only been on this board for a week and I already feel like a member of the family. My husband doesn't want our friends to know about my cancer diagnosis, so that leaves this board for me to share my thoughts. I'm incredibly impressed that some members who are facing much scarier scenarios than I are using their time and energy to offer help and encouragement to others. Thanks so much for the virtual hug & forehead kiss -- it went a long way to making me feel better ;-).

Lisa, I think humour is healing -- please keep it up!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

No risk of Lisa dropping her guard - her humour is one of the lights of these threads.

One Lucky Girl, I hope your very warming posting clicks with Fox. This really is a friendly bunch of people as Limelife50's message so eloquently testifies and I share Michael's admiration for those survivors who have stuck around to help others with their friendship and wisdom, born of experience. That's not to disparage all of those who could be here but choose not to be. Especially folks with busy lives and young families may want to put this baleful ethos well behind them and get on with their happy lives, despite the rich fund of well-being here. They may not want to perpetuate the memory of this episode in the lives of their loved ones who, in turn, may think it morbid of the survivor to continue to dwell here. I can understand your Husband not feeling like making your illness public, as yet, and it is, indeed, lucky that you have this surrogate family to share your thoughts and feelings with.

Talking of this family, I've noticed that it's getting much larger and much younger, doubtless reflecting the better and earlier detection rate for RCC. I've also noticed the increasing number of pictures of glamorous young ladies gracing these pages. We've had some for quite some time but I date the increase in numbers from when Flatlander decided to put his torso on display [how're you doin', man? I hope you're now capable of carrying people down ladders - but I hope you aren't!] I turn to young blades like Fox and Gary to second-guess my suspicion that we're being led up the garden path. I suspect that these pics aren't really of our friends themselves but are shots of as yet less well-known film stars - Gary and Fox, what do you think?

JackieP125's picture
JackieP125
Posts: 55
Joined: Jan 2012

When I was told by my Urologist that my tumor was cancer the first thing I did was tell my family. I went to see each one and told them in person. When we are diagnosed, we go through several stages of emotional distress. Because of this, I waited a several days to inform my friends. We have a wonderful group of friends that we have entertained the last 13 years. We are 6 couples and we do everything together. These people were such a great support group for me. I can't image not having them to be there for me. They called. They visited me at the hospital and at home. They sent flowers and cards. They brought us food. I got lots of hugs and love. I can't for the life of me understand why your husband does not want you to tell your friends about your cancer. If there is ever a time in your life that you need your family and friends, it is when you get a cancer diagnosis. I don't know what I would have done without mine.

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

I just wanted to say an extra thanks to Icemantoo. He is nearly 10 years post-op and has been a member here for over 2 years and is still sticking around and helping people everyday. His posts have helped me many times over. Thanks Iceman and thanks to any other people who have been here for awhile and stayed around.

Blessings,
Lisa

foxhd's picture
foxhd
Posts: 1899
Joined: Oct 2011

Lisa, Boy, how often I worry that I have also offended someone by trying to be a little funny. I know exactly what you are saying. This is serious business. Cancer-negative, humor- positive. But, there are those of us here who will laugh when they are throwing dirt on us. I intend to be that one. When I was in my 20's I was introduced to Dale Carnegie's book, "How to win friends and influence people." I have modeled my interaction with people around one concept he taught. In a nutshell, he stated that if you have had a rotten day and are miserable, then come home from work in a bad mood, you will want to kick the dog, yell at your kids for leaving their toys out and complain to your spouse about your day. Now, because you were in a bad mood, everyone is in a bad mood. He said that what you need to do is sit quietly for a moment before going into your house. Think about a special time, vacation, the birth of your kids, your wedding or something similar that makes you smile and feel good. Once you find that feeling, then enter your home. You'll pet the dog, hug your kids and kiss your wife. Now everyone is in a good mood. Such a simple concept. It is the basis for my personality and how I interact with people on a daily basis. ( unless I'm talking to a car salesman). Life is too short for negative energy.

Retired USN's picture
Retired USN
Posts: 2
Joined: Jan 2012

I had my right kidney removed on 1/10/2012. Because of the medical history of my family with cancer, I was terrified that I too would be defeated. Because of all of you who have posted, I had a great deal of insight to what I could expect prior to the surgery and how to deal with the healing. Because of you I knew the discomfort was coming and it would eventually get better. Because of you, I had a better plan for "why me?" and how to approach my illness. Because of you, I have a greater appreciation for all of my supporters who reached out and held my hand in the darkest of time. I want to thank Lisaintn and Icemantoo for your post. The words have made a major impact on me and has given me the stregnth to make plans for a wonderful life. I have had my first follow up and everything came back excellent. I would say to everyone that is experiencing the frustrations of not knowing who to turn to on your road of treatment and recovery, your new friends are right here. To each and everyone of you that have posted, I want to say "Thank You". Your words of wisdom is the support, all of us can use.

icemantoo's picture
icemantoo
Posts: 1528
Joined: Jan 2010

We are all here to support each other. The newbies need the most support. Being told at a fairly young age that they have Cancer and then having to face major surgery. Things do get better. Its just that darn initiation and the C word that scars us. Luckily for many of us we can get by both with flying colors or for our Canadian and other friends, flying colours.

Best wishes to all,

Icemantoo

JackieP125's picture
JackieP125
Posts: 55
Joined: Jan 2012

I too have read only 3% of cancers are kidney cancers. I guess that is one of the reasons it is so hard to accept it. How in the hell did I end of as one of the 3%? I had a better chance of winning the lottery then getting this disease. I have people tell me all the time that they have never heard of kidney cancer. WOW!! I think I'll keep buying lottery tickets. My odds of winning are looking better. LOL!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Well, WHEN you win the lottery, Jackie, you know who your friends are! I'll give you a clue - a certain section among your friends reckon you've already won the lottery :)

By the way, I noticed that you located your earlier posting strategically between Lisa's picture and my remark about film stars. [I know you really put it there because you wanted to respond about One Lucky Girl's Husband's attitude.]

USN (R) - welcome back! It's good to hear from you and know that you're doing so well (and still looking so spruce!).

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

Ya know as I think back on my own journey I realize that there came a point around the time of my first follow-up scan and NED that family and friends "seemed" to not want to talk about it (cancer) anymore and I think that's normal. However, I still needed to lean on someone as I came to terms with the turn my life had taken. I had stumbled onto this site shortly before my surgery and remembered how kind and understanding the people here had been so I came back and for a few months all I did was read and be amazed by the stories and people here. Though I never felt unwelcome, I did feel a bit like a peeping tom sharing people's personal lives from the outside looking in. Somewhere along the way I felt comfortable enough to share my experiences with the never ending supply of newbies we have (sadly) and learned in short order that it helped me probably more than it did them. Bottom line, there is a bond here that you can't get anywhere else and while it is odd to share such closeness with people I may never see face to face, family is the best description there is and it doesn't matter if you have been here a day or ten years, all are welcome.

If you are worried about offending, DON'T, the common bond we share outweighs everything else. Good day or bad we support each other and openly accept the diverse population whose journey lands them here. Laugh when you can, cry when you can't, vent when you need to, but understand, no shoulder will turn from you here, no ear will fall deaf, the support that is given today may need to be returned tomorrow. CANCER SUCKS!!!

God bless us all,

Gary

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

Great post, Gary! When you said, "...... I realize that there came a point around the time of my first follow-up scan and NED that family and friends "seemed" to not want to talk about it (cancer) anymore and I think that's normal.", that really resonated with me. I want to talk about it yet because I find myself having some weepy moments if I don't. I feel like I'm still trying to deal with this sometimes because it was like......"You have cancer", BAM! Let's get you into surgery and then you come out on the other side with your head spinning because you never even had time to process it or deal with it.

Also, now when people ask me how I'm doing, I stumble all over myself because I never know anymore if they're just asking in general or asking about my cancer? I never know how to respond anymore. lol

Blessings,
Lisa

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

Hi Lisa,

It was very difficult for me when the elephant suddenly entered the room (and it did seem sudden), that first NED satisfied everyone, but my fears and emotions were still raging. This site pulled me from the edge of a deep hole that was complicated by a strong case of survivors guilt. I feel indebted to everyone here, new and old.

I know exactly how you feel when people ask "How are you?", in time you learn to gauge when someone is actually looking for a little more than "I'm doing fine." and there is no real harm in giving someone a bit more or less information than they were seeking in the meantime.

Thank you,

Gary

Michael6701
Posts: 26
Joined: Sep 2011

Hi Gary,

I had my surgery last June and as soon as I felt recovered I more or less abandoned this site or any discussion about the cancer. In fact, after a fall the ER admissions nurse asked about things like recent surgeries and I omitted any mention of the cancer surgery until my wife reminded me. I think I went into a denial phase that arose out of "survivor's guilt", though I hadn't specifically thought of that term to describe my feelings. I lost my mother from Hodgkins and 3 siblings from RCC, all in their early 50's. I wasn't discovered until 67 and I have apparently survived. There is nothing in my quality of life or being that would make me more deserving than my siblings, yet here I am. I do feel guily about that sometimes. Going on this site and seeing how well others are coping makes me feel a little better.

Michael

Minnesota Girl's picture
Minnesota Girl
Posts: 115
Joined: Jul 2011

I'll echo the same - I've found comfort here that's different than anything in my outside life. My husband is fantastic - totally supportive and my best friend, but there IS something special about this family.

Last night I was grinning like crazy when I read all the supportive responses I got on my recent post about "a good 24 hours." My husband wanted to know what I was smiling about, but I just couldn't explain it to him.

As far as being in the 3%, did you know that Kidney Cancer is NOT a rare cancer? Even at 3%, it's still one of the top 10 cancers... Gives you a feel for how BIG the biggies are, and how lonely those with a 'rare' cancer might be.

foxhd's picture
foxhd
Posts: 1899
Joined: Oct 2011

Gary talks of responding to questions about,"How are You?" As always, I say ,"Excellent." When my doctor asks, I say, "Excellent, unless you tell me otherwise."

jhsu's picture
jhsu
Posts: 78
Joined: Sep 2009

We are drawn and keep on coming back to this site because of tacit understanding, the subtle feelings among us we can tell and appreciate. And this is exactly the reason why we’ve been posting on this board offering our own experiences to help each other fighting RCC. Live long and prosper everyone (\\///) so that new comers can learn it from us.

Jon

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

That's a fine and appropriate priestly blessing Jon \\//

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Funny, Fox - substitute 'Fine' for excellent and you have the formula I use too (although I'm sometimes not quite as succinct :) ).

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