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I'm ashamed of myself

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

Too many recent deaths. They impact me for the obvious reasons. It isn't fair and it will not be. One person dies and another lives. Same dx. and treatment. I'll never be ned, but I've always been a partial responder to treatments, so as long as new options become available, I may be ok. There is some survivors guilt but not too much. I have worked exremely hard to reach this point and believe 80% of people who have had a similar history are not here. I've held a supreme confidence in myself to never quit. It is why I am still here posting. Everyones support and feedback provides the fuel I need and if it were only up to my family and med. team, I'd probably be long gone too. I am unable to express my graditude to all of you to match what is in my heart. Thank you. For those of you who observe my writing of FLY, I know it gets interpreted as some mind tripping trance inducing expression of soaring above all that tries to break us. Mind over matter. My spiritual high. I kind of not want to tell the real truth. FLY stands for, "Fox Loves You". So soar as you wish. Remember I've got your back. Karma. It is always larger than the sum of its componets. When my time does come, it will be my reward to relax after going the distance. Much different than having my life cut short as if someone pulled the rug out from under me.

Ashamed. Embarrassed. I'm actually kind of sick over something. I realize this feeling is because there are only a few people who actively post who have been here longer than me. I am a dinosaur. Everyone else, like 95% of you reading this, are relatively new. You go through things in your daily lives that I have lost touch about. Ancient history. And to me at this point often bordering on ridiculous. (maybe if all new RCC patients had a high death rate, no one would be concerned over the length of their scar.) Sorry people. Focus. A scar is the absolute last thing someone should concern themselves with when we are talking about a necessary life saving surgical procedure. But I am rambling.

I was researching a bit on targeted drugs for RCC. One site led back to a discussion posted in this forum from several years back. I had to click it. Curiosity. I was interested in the who, what and when it was posted. It broke my heart. I am so sad and hurt. This is going to take a few days to deal with.

Just like today new members come and go, came and went. Some of you may have developed close relationships and stay in touch with friends you met here. A bond developes. Back when I started, Iceman and Donna lee were already supplying support. Texas Wedge was the brains and leader of our group. GSRon was a friend to all. GaryM carried us with humor and positive energy. Then there was one more. The original poster of the topic I was searching. I am ashamed and embarassed because as time passed memories faded. Maybe as few as 5 people here remember and knew her. But how could someone I cared for so much slip from my thoughts?

Recent tributes to the loss of Kevin, and Foots, and Mark stirred memories of others. Tex and GSRon, Alexanra, Djinnie, Neil, Blkjak, the captain. People we loved, respect and mourn for. I need to add to this list. I promise to NEVER let it slip my thoughts again. We developed a closeness and will tell you I was falling in love with my new best buddy. She valiantly fought to survive. A big piece of me is missing.

Paula. I love you and miss you. I cannot forgive myself for not keeping you first on my list. I will never let that happen again. Maybe some day we will meet and after I squeeze and hug you to death we can continue helping those who need us.

Paula, you will always be my best friend. FLY.  Thankfully I still have Jojo, Jan, and Donna Lee to help me hold it together. Don't underestimate the value of friends one can make by participating and generating the karma that keeps us alive. One thing that does sadden me is that I don't see the closeness between members today that I experienced 5 years ago. Make me wrong.  To everyone, "Thank you for listening."

 

 

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

Don't beat yourself up. Whether it's ok or not, having memories fade is a testament to you living life! It's a positive  spin on the guilt I'm sure you are feeling, but one that deserves at least a bit of space in your brain. I love the support this community has to offer and hope to develope relationships that last a very long time. 

rhominator's picture
rhominator
Posts: 233
Joined: Nov 2015

Time dilutes memories--by the simple accumulation of more memories as time moves on.

BoondockSaint's picture
BoondockSaint
Posts: 242
Joined: Mar 2017

Wow......I have no words other than, I am thankful for you and each and every person here. Tho we'll likely never meet on this side of eternity. It eases my mind to have ya'll and this place.

 

stub1969's picture
stub1969
Posts: 868
Joined: Jul 2016

Fox, thanks for writing.  My appreciation to you for expressing your deep feelings and exposing your heart to us.  I do want to bring up a point that you mention about not feeling the closeness on this site like you experienced in the past.  As you know, I wasn't here 5 years ago, but I can't imagine having any stronger feelings towards a group of "friends" (albeit cyber friends) than I do to the folks that post here regularly.  My time here has been short compared to you, but I've seen posts where members roll their emotions off thier fingers on the keyboard so you can literally feel their pain or joy.  And when you, or I, or others help them or  we celebrate with them, the thanks we receive and connections we make is genuine.  To me, that's pretty powerful.  I wish you well, my friend.

Stub 

Retcenturion's picture
Retcenturion
Posts: 240
Joined: Mar 2017

I am a Newbie here, was taught keep ears,eyes open .mouth shut. I have been going through archived posts.I am not a tech guy at all,but am so glad to have found this forum. In the physical world memorials teach the new what people did before them. The memories here are in the words that people have posted. Your friends who have passed have left a great Legacy for us who did not know them and we get to read their stories. Your story & opinions are well known and highly respected.Thank you.

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

Oh Foxy baby, glad you could get this off your chest/heart! Good reflection.

Remember, when we ARE dealing with a chronic, life threatening illness and side effects of meds/treatments we hope will keep us here even longer, it does become about US, the individual. It takes ALL your strength and constitution, Fox to just get through each and ever day, each and every treatment.

FOX LIVES=and thats a good thing! Healing doesn't always mean of the body. I know you already know this.

Sending you continued hope and wellness my dear!

Healing Hugs, Jan

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

Fox, my introverted personality prevents me, a lot of the time, from sounding like a friendly guy and forming comraderies online.

You were one of the first forum members I read and interacted with. You are the continuity and the bridge between the old forum and the newer folks.

I like to think of you as a mentor and as a friend.

Wow. Sounds corny but I'm going to post it anyway.

 

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

I miss those. I drop in less often and don't feel good about that, but I have to admit I'm glad my cancer is not on my mind like it was.

Another name that didn't make your list, but is on my mind: Nanosecond. Researcher, poster, fighter. I miss them. GSRon was the only one of these I had a chance to meet in person. His passing really shocked me, as I'd just seen him a few weeks before and he seemed to be in really good health and spirits.

I'm so glad you're here and that you continue to post and support all of us, and that we get to keep suppporting you and others.

TLY

Not quite as catchy. ;) Oh, well. It's the sentiment that counts.

Todd

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

Todd, I just love it when you DO appear, anytime! But glad you are not dwelling on cancer.

And Fox did mention Nanosecond by his first name, Neil.

Stay well my friend,

hugs, Jan

sandy23
Posts: 143
Joined: Jan 2017

As always, you are so well-spoken.  You must have had amazing grades in school.  

For what it's worth, I can't tell you how much I appreciate your candor and straight from the hip way of saying things.  I know this will sound a little strange but I often think of something that someone has said on this forum when I am having a particularly low moment to try to "dig myself out of the hole".  You are that person many of those times and I thank you for that.

SLY Fox.  Hey, that kind of works, ha ha!!

angec's picture
angec
Posts: 924
Joined: Mar 2012

Fox, I know what you mean.  It seems that when we checked in each day it was comforting to see the ole group responding and helping new ones.  Even One putt left us

 which meant Alice didn't stop by anymore. What happened to Gary?  He just stopped his Friday jokes. Is he ok?  I miss the old gang too.  But, I look forward to coming on here and seeing your comments.  You never fail to keep everyone on their toes.  So grateful that you are responding to treatmeht, you have been through heck and back.  Guilt is not a good thing, let it go.  Positive energy is what is needed to keep going.  Thanks for sharing yours.  Hugs and such!

APny's picture
APny
Posts: 1988
Joined: Mar 2014

Words fail me. Wish I could give you a hug. xo

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

When Paula passed we didn't know. She had just wrote me to tell me she couldn't do it anymore. Alex the firecracker had some amazing talents and posted her obit. I can't find it and wondered if any cyber detectives can? I think her link was through the jewish connections in Atlanta. Alex was also able to get in contact with Tex's business associates when he passed also. I miss my friends. It is sort of like the biker community. Loyalty is a rare virtue.

rhominator's picture
rhominator
Posts: 233
Joined: Nov 2015

Fox, if you know the website where it was posted, then you can look for snapshot of it on the Web Archive (https://web.archive.org/), aka the Wayback Machine.

marosa's picture
marosa
Posts: 333
Joined: Feb 2015

Im here. Always listening to what you have to say.  Forever forever grateful and always at a loss for words!  Love you Fox! 

donna_lee's picture
donna_lee
Posts: 968
Joined: Feb 2009

have gone beyond the board.  Sometimes Fox and I have communicated thru the personal connect.  I absolutely cannot see a Harley without thinking of you.  And living on US 101, which follows the Oregon coastline, we get lots of them passing through and just visiting.  There is even a Harley Store, the furthest west in the US.

I think because this is semi-anonymous, as we don't run into one another at the grocery or game, we reveal more of ourselves than we might in a sit-down support group. This seemed to be they way I felt after regular participation in a local, weekly group for over 8 years. Here, you can just add a High 5 to good news, or address a situation with valid comments, or offer support.  But sometimes you just don't have anything to add, as is my case-they were experimenting with robotic and lap surgeries, the drugs available now weren't even in trials, and my cancer had mets to so many places that my first surgery took 11 1/2 hours.  Of course I didn't even get out of recovery and/or ICU for 2 days.

We all come from different circumstances in joining together to fight to live and survive after having cancer.  I am reminded frequently of this fight, especially when I am with my youngest Granddaughter.  My D-i-L was 6 months pregnant with her when she joined me at the P.C.s office as he was telling me what my test results were.  Now I get to watch Bridget play volleyball, swim, run track, and do all sorts of things.  She participated in age group track thru Boys & Girls Club and was showing me her ribbons-2 blue's 1 red and 1 yellow.  I told her I was really proud of her and gave her advice that, "it's not always about winning the blue ribbon, but is important that you try to do your best and finish the competition or match."  Her efforts this past month seem to have given her good results; she took 1st in the 5th grade girls 100 m. dash in a local all comer's meet; and will now get to go to state at Hayward Field on the UO campus in June.  Hayward was host to the Olympic Trials last year and the kids meet will follow the 2 days of NCAA finals.  Way to go young lady!

I guess my advice to her is reinterpreted for us; Fight the good fight and no matter where the finish line is, make the effort to get there.

You made my day, Fox.  Keep inspiring all of us.

donna_lee

Bellafelice
Posts: 57
Joined: Sep 2008

Dear Foxhd,

  When I first got on this board 3 months ago and was panicing about my hubbys diagnosis of RCC mets, JoJo and I had been corresponding daily on this site. When I told her that my hubby had 2 spinal mets, she recommended that I contact you as you had experience with that. Sure enough, I did find you and you got right back to me. I follow how you are doing all the time, along with several other members that I have been fortunate enough to meet here. It is pretty obvious to me what a wonderful person you are. I am sure that everyone you have touched has come away a better person for it. Thanks for being here!

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

at this computer crap. I found Paula Boze obit in the Atlanta Newspaper.  She passed at home april 8th, 2013.

You have all said wonderful things. It means alot to me. This remains the best place to provide my dose of feelgood.

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

Hi Fox... You know.. I can't really say 'I love you' because, well, you know...

But I do kind of like you... A bit.

Anyway... It is good to hear/read/witness people revealing themselves.

I communicate reasonably well but I am still very self conscious about revealing anything deep, important and personal. It's interesting because when other people reveal themselves it usually raises my opinion of them (except for the psycho types, of course).

Steve.

lobbyist0724's picture
lobbyist0724
Posts: 428
Joined: Sep 2016

I believe the best place to share our feelingis is here. There are alot of ppl won't post a single post but I am sure lots of them check here everyday based on the view counter. Not saying ppl around us are not caring, but they just can't undertand us at the same level in terms of facing the fundamental fear, some might have serious emotional attack daily or from their related side effects. But from what I have been reading, the audience here understand, and are touched. Fox, not saying I will understand the difficult at stage 4, but I am touched with the words (the sad ones and the funny ones). I recalled my phychologist taught me something years ago, saying we are just human, there will always be guilt, regret and etc. And we will need to learn how it "let go", she taught me to do a flush every year to forgive myself.

Those friends have completed their journey and are now on a new one. Therefore, please cherish the new ones here, even thhough they might need you more than you need them :)

p.s. for the new ones, please type one line or one word (i.e. congratulations) sometimes just to support each other will be fantastic!

Carmen

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

but haven't yet. Steve, I have exposed myself to many. (ou la la, Maria)( Speedo pics @ $2.50 ea. ) Just a few years back I led a pretty hi profile life. Highly respected professionally, athletically, and a biker who could blend in anywhere doing anything. I had a million friends. Participated in many groups. I don't do any of that anymore. I have very few social contacts outside of here. I enjoy my time being my own. I had never intended to be the Foxasaurus of a cancer forum. But as you have learned in your short time here, there are members who really care about others. This group has no room for dishonesty or misleading information. As time passed, most of my laundry has been hung up for all to see. And as long as I remain part of this family, you'll know who you are dealing with. My future has only one plan. Survival. No more work. No motorcycles. No intense ex. No new hobbies. I'll spend the rest of my life involved with personal interests. It makes me very happy. You are all my closest friends. Some very close. And as long as others can benefit from my experience, I'll unbutton my trench coat. I've been disappointed to find out information about members only after they passed. Work, hobbies, experiences that we could share stories and laughs over.

Has anyone wondered if the person we've known only by their screen name could be someone famous or influential? How many golfers here knew that Texas Wedge was a powerful attorney, lived along Carnoustie(one of the oldest golf courses in the UK, and golfed daily. Even when it was as cold as 17 degrees!

Fellow bikers owe it to themselves to learn about our friend GSRon. A world famous motorcycle builder and legend at the "Isle of Mann" motorcycle races. (anyone here who thinks they can ride needs to pull up a youtube video of Isle of Mann. Or even just GSRon.

Thaxter, and Foots were bluegrass and traditional music string players.

Marosa is a world class photographer. www.maryrosajimenez.com. Do yourself a favor and view her pics.

Not everyone can be influential. Not everyone wants to be a friend. But those who share their closest joys are the kind of friends I like to be friends with. Most comes out in pm's but friends become friends through there posts.

BDS's picture
BDS
Posts: 172
Joined: Aug 2012

Fox you may be a dinosaur but you are not extinct! Life unfortunately is just the luck of the draw. When my daughter was young she once belonged to a choir. They would sing “The Star Spangled Banner” at local sporting events and perform at nursing homes and shopping malls at Christmas time.  One day the assistant choir master made an announcement that she was resigning her volunteer position on the choir and quitting her “Corporate job” to pursue her passion of a music career. She was twenty something and the world was her oyster. She was just heading to the office to clean out her desk that day on 9-11 - she never came home. Ever since that day I have learned to appreciate every breath God gives for what’s worth. I always make it a point to do something enjoyable every day. Even when I do not feel my best I will force myself to just take a walk in the sunshine. No survivor’s guilt!
PS – May 28th will be my five year anniversary. Fox like you I am becoming a dinosaur. I know at this point I will never be cured but I want to become an old and crusty dinosaur.       - BDS    

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Foxy, I understand completely what you are feeling. It feels that there is something missing....and yet, I read and am amazed at the caring, wonderful people here. But a part of our hearts belonged to the people we lost. There definitely was a connection in that group. A depth. And yes, the recent losses we have suffered stirred up old feelings. I still read here, but I hesitate before I respond. Not sure if it is because others are answering, and I would just be repetetive, or that I am afraid to get attached or a combination of both.

But you are right - again - that we are all friends here, and how we share, and what we share determine what friendships develop - and how deeply they develop. We do have some fascinating and talented members! Me?? Not much - but I do make a mean chocolate! Everyone always asks for it and 3 men have proposed to me after eating this chocolate (not my husband, though - LOL) - so I name it "Marriage Proposal Chocolate". I also love to karaoke ... but believe me when I say that everyone doesn't ask for that!!! I can't sing well, but I do love it!

Let's continue to embrace our lives, our old friends, new friends, and open our hearts when we can.

JLY! (really doesn't work, but you get the meaning :)

BIG hugs

Jojo

 

marosa's picture
marosa
Posts: 333
Joined: Feb 2015

Thank you! I love that you love my work!

 Amazing all that comes pouring after a post like this.  It feels good to share a little more of our lives and not just our desease although  I undestand how the urgency lies in exactly that, being able to learn and vent and find knowlegde and hope and care... that is what brought us here!  But is it very nice to get to know a little more about us and the lives we lead other than our stage and grade.

 BDS you went thru the hardest thing a person could ever experience; to loose a child.  It takes a very special person to live thru that and then cancer and have a sticker like you have here saying life is good and showing a big smile.  I am humbled by you and so many here!

Jojo, that chocolate is going to get us to meet the next time you go to the D.R. !!!

 

 

BDS's picture
BDS
Posts: 172
Joined: Aug 2012

 

Dear Marosa my daughter is not dead! But, there are times I want to kill her! She is now twenty-two. Thinks she knows everything, feels entitled and thinks the world revolves around her and her friends. No my daughter was in a choir and the assistant choir master died in 9-11. The point of my previous post was just that you never know when the cord of life will be cut so find something in everyday to appreciate life. - BDS        

 

APny's picture
APny
Posts: 1988
Joined: Mar 2014

Thanks to Fox for link! You're an amazing photographer, Marosa. Love your work!!

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

Fox, i'm very proud of you, you're one one of those who are always here to help. We come here write about anything which comes to out mind, anything which makes us hopeless, terrified, knowing someone replies and gives us hope. You are one of those ones who always gives others hope. Thanks for being a live non existing not in danger dinosaur.

disha2000
Posts: 2
Joined: May 2017

Hi All, 

I am new to this space, my mom has been diagnosed of RCC and has done nephrectomy. Mets are seen in 8 different places and she is now going through radiation on her femur bones. Starting this weekend Sutent or Pazopanib will be given to her as part of treatment. 

When we got to know about all this, we family members were under big depression, we had not seen our mum in that situation. We did not have any one to talk to and explain things. Doctors will say what they can say and will say and politically correct. But yes they are helping to keep my mother better. Long way to go for her. 

Reading through your experiences, and your positivity I have gained 1000 elephants strengths and determined to support and do all that required. Like Jan had earlier advised, to keeping my moms capability to take it all that be given to her.

It is great moral strength for the patient family and I am sure will help 1000s.

Thanks

DD

marosa's picture
marosa
Posts: 333
Joined: Feb 2015

Disha, Im very sorry that your mom is going through all this and also that you as a loving daughter are suffereing as well form this very difficult situation.  I hope and wish for strength for you both an a positive outcome on her new treatment.  I know it can be a little confusing when you start posting in CSN but I would recommend you start a new post.  This one, where you have chosen to post has been exhausted and may go inadverted to the rest of us.

BDS I am so sorry I misunderstood your story.  But I am soooo happy to learn that I misunderstood!!!

Thank you very much Apny!

 

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

I understand how the Fox feels, the loss of friends that I met here eventually became too much weight to bear.  I still visit from time to time, but this post struck a nerve and moved me like no other for a long time.  Foxy, you have long been a hero to me, not because of what you have endured and survived, but because through it all you have always been more concerned about others than yourself.  You have always ben the greatest positive energy generator on this site, may that never change.

 

One for you;

 

A doctor was beating himself up for having slept with yet another of his patients.  He was all depressed, down, and drinking heavily when a devil appeared on his left shoulder.  "Its no big deal" he said, "happens every day all over the world, you should plan on doing it more often."

Then an angel appeared on his right shoulder and said; "Cut that crap out, you're a veterinarian." 

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

How I've thought about you Gary! It  stinks when people disappear and we don't know what has happened. Thanks for popping in. How are you my friend? I reference you at times. Newbies need your advice re: post op walking and drinking water for recovery. Please hang around awhile.

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