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CSN ~ What It Means To Me.....Share Your Story

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

I've been thinking about this lately, and myself and some close survivor/caregiver friends have been discussing these same things.

What CSN Means To Me
CSN is a place that I find comfort in... I can vent, I can share, I can throw out things in my life that are cancer related, survivor related, or just life after treatment.... CSN is a place that I find comfort discussing these things. I can discuss them with others that are, have or will be going through. Things that unless you have been there, done that....you just totally don't get it.

We are a community, we are family.

How Has CSN Helped Me
The survivors & caregivers in this community have helped me get through this battle. Even though it has now been over three years, going on four since I heard the words, "You have cancer"....

You have helped me and lifted me when I was down. You have allowed me to lift you when you were down.

It's an outlet to let our emotions flow. To share with others that know exactly where you are coming from, where you are going, where you have been...

It's a community unlike no other I have every been a part of... It's a Family.

CSN also helps me, by giving me the opportunity to help others... Those just starting out, some mid-stream, even some as myself a few (or more) years out from treatment.

What Keeps Me Here
Sometimes I think about that myself...

Mostly, I'm pretty sure that all of you keep me here. Sharing stories, support, and the time and knowledge that I have gained from having cancer myself.

Having cancer is an education, non like any that I have encountered before.

I've come from January 2009, first hearing that I have cancer. Thinking of pale, frail , no haired people that eventually wither away and die....

Boy was I ever wrong... technology is awesome, modern medicine is great...and people, well myself and you guys/ladies.... I have never seen anyone with the will to live, battle, win and survive as we.

I love sharing my experience, giving hope, a dab of abi-normal humor...and my life after cancer and treatment.....

Hopefully making the journey easier in some small way...

Giving back...in my way.

I want to personally thank The American Cancer Society (ACS), and the Cancer Survivors Network for having this site up and running, and to allow me to do all of things I mentioned above.

Lastly, I want to thank Greta, the lady behind the scene on CSN... without Greta this great community would have never come about, or lasted as long as it has.... Hoping that CSN stays here for many years....

Share your story.....

Best,
John

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

Thank you, John, for sharing this with us! You made me cry.. in a positive way :)).

I'm an European but I feel so close to CSN and this board which is helping me and my family to cope with my dad's illness. People like you who still stay on this sites are like angels caring us in your hands through rough times.

God bless you, John with long, healthy and prosperous life!

Vanessa

osmotar's picture
osmotar
Posts: 951
Joined: Jul 2011

John,

I couldn't have said it better. Like others I'm sure when we were first diagnosed , I went what the hell...I had never been affected in my life or my immediated family with cancer, much less someone telling I had cancer of the tonsil. I went to the Internet and started to read, omg talk about doom and gloom , it scared the holy hoot out of me. I went to the American Cancer Society website and I found CSN, what a godsend to find the H&N group, what an amazing band or warriors. While I have a great family and friends support group, the folks here have become like extended family...the comfort I find in knowing I can say , ask, or comment on any subject brought up is amazing. I count you all in my blessings everyday, knowing here there is strength of character by each and everyone of us even on those days when it seems we can't take another step, that there is will be some one extendiing their hand via the written word to comfort us and encourage us to keep moving forward. I know my journey isn't over, I don't have a crystal ball to tell me where it will take me...BUT wherever it may be I will know that I have a home here, and a peace in my soul by knowing you all.

Blessings and Light

Linda

ratface's picture
ratface
Posts: 1232
Joined: Aug 2009

of sorts. I remember when I first came here literally scared to death about the same time as John. It really has been a community that is reflective of current society. What a relief to find someone else with this awful disease. What a complicated animal it has been. What a shot of realism to discover people die from this stuff with regularity. What an equal Revelation to find that folks can, and do survive this cancer. Surviving in a real sense of prosperity and normalcy sometimes and sometimes not. So it has been a personal evolution to stick around and gain insight on the many aspects of this fork in the road with so many side trails. My thanks to the old timers, anyone who is way down the path because it's always easier on a traveled road. CSN to me is a place to evolve with the rest of you as we walk the path, but never alone.

Baygal's picture
Baygal
Posts: 34
Joined: Sep 2011

John,
I will be celebrating my one year anniversary on the 7th of September as a cancer survivor.
When I first posted, you were the first to reach out to me and assure me that this was not the end, but a new beginning. As you said, it was not easy but doable. Thank you, Dawn aka. Sweetblood, and all the many others who have helped me with this journey these past 12 months. It has meant more than you may ever know.
Vickie
aka Baygal

Grandmax4's picture
Grandmax4
Posts: 578
Joined: Dec 2011

and a feeling of disbelief is how I felt when my ENT Dr held my hand and gave me the dreaded news, how could this be true, 66 years old, only stay in the hospital was when I had my 2 kids, no broken bones, no nothing...as I drove home, suddenly it was like a voice spoke to me and said okay, time to kick some cancer a$$.

John, and many others..you'll never know the impact your posts have had on me, I've laughed, cried and rejoyced with all of you...on a blue day, you've made me smile, I am so glad I found this site.

I'm 10 months out now and plan to stay on here, offering advice when I can and friendship always...some, that only post a few times, I still wonder about and pray they're doing good..you faithfuls, new and old-timers " Light up my Life, bring me hope, to carry on" Thanks

katenorwood
Posts: 1808
Joined: May 2012

John,
Thank you for giving us all access or should I say an avenue for it. I will be sitting down later today and doing just that ! Everyone means so much to me...especially this H/N site. But I have met soooo many people with different dx's because I love to jump around on all boards that might or might not effect me or a loved one or friend dx'd with this fiend. Bless you all that have made my journey quite a bit easier...and all the laughs I've had with the good natured ribbings we give one another. Katie

Fyrewoman's picture
Fyrewoman
Posts: 1
Joined: Sep 2012

I wish to God I had known about this site in 2007 when I had my 1st diagnosis. It would have helped a lot. You express yourself in ways I can't even to this day.
My 1st diagnosis was squamas cell of tonsils spread to hard & soft pallet, throat, tongue and lymph nodes. Because I had retired early just after Katrina I let my insurance drop and began college part-time and was care giver for my mother(stroke). It took me 2 months just to get someone to accept me as a patient(LSU-Baton Rouge) And another month before treatments began. During those 3 months I was in the ER 3 times ,2 admissions, 3 surgeries (Pacemaker, Port, & Peg tube).June through November I had radiation, Chemo, & surgery to remove lymph nodes in neck. I was cancer free for 18 months when it showed up in my lungs. Still squamas cell, but 2 chemos the tried didn't work, did radiation then another round of chemo. Cancer free but very weak with no immune system left. Started over went to gym and was training for the Crescent City Classic,went to hospital with a really bad infection in my lung. Thankfully had medicare by then. ICU week, then 30 days IV anti-biotic treatment as out patient.Another clean bill of health then in Sept. 2011 I had seizures while driving and wrecked. Was transported to ambulance with stoke symptoms. Within 1/2 hour I was able to speak but not write, walk a little to the bath room to give a urine sample, they suspected alcohol. They ordered a cat scan just to be sure(no more MRI's- pacemaker). I had 2 tumors in my brain and active bleeding, needless to say they immediately made me lie back down and transported me to Ochsner Jefferson Hwy. Upon my release from ICU a bunch of Doctors came in one at a time with different suggestions including full brain radiation, surgery, Gamma Knife Surgery and other treatments.
I wouldn't give any of them an answer right away, I did some research and decided the least side effects and highest percent of recovery was the Gamma Knife treatment.
Had treatment and tumors were shrinking, no sign of any new tumors in brain, but it wasn't over yet. Spot returned in lung really small and growing slowly decided to watch it.
Was scheduled for an appointment in July when a week before the appointment sysmptoms started that the brain tumor had returned. They had me in the hospital within 3 days for surgery it had grown too fast and they were afraid it was a new form of cancer. 5 days in hospital, PT, Speech Therapy and Home Health nurse for 6 weeks.Gamma Knife again. Not completely cancer free but spot in lung has stopped growing for now. Feel great.
Going to move to pan-handle of Fla. to be near my son & grandkids. Does anyone know any doctors in that area? My current doctors don't. And most peolpe my son knows with cancer go out of state or to Gainsville or Tampa for treatment.

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

Welcome, you have been through the mill and back again....

Tons of awesome people here, amny if not all willing to share and help in anyway that they can.

I don't have any recommendations for the panhandle, but I do live near Tampa.

I know that The Moffitt Center in Tampa, and Shands in Gainesville are both highly recommended institutions....

Good Luck on you journey, and survial and hope you stick around for awhile..

Best,
John

CajunEagle's picture
CajunEagle
Posts: 357
Joined: Oct 2009

and welcome to the family, neighbor.

Larry

osmotar's picture
osmotar
Posts: 951
Joined: Jul 2011

Welcome to the the group....you will find amazing folks here.

Linda

hawk711's picture
hawk711
Posts: 525
Joined: Jan 2010

I came for answers to my questions of why my treatment seemed to be killing me! Why do I have sores in my mouth, how long will they last, why do I have too much mucous one day and then all of a sudden I have no saliva! Why did I feel so bad and what could I do about it.

I found those answers from very friendly people here on the CSN board. They were quick to respond and had great insight because they had experienced the same problems. I found a forum that fit my personality. I didn't want to go to meetings and sit around with others who had cancer, I wanted to be as anonymous as possible during this time but I wanted someone to talk with me who knew what I was going through. My wife was the only person who knew how bad I was feeling and how bad the treatment is (although it works).
I found I could verbalize frustrations, actually help someone else, and was glad to see that others had found happiness again after treatment. I was hooked from the first day I read the postings. I didn't write for a few weeks. I hid out reading others posts and learning and feeling like I could try to fit in. I not only fit in, I was welcomed with open arms by folks I'd never met and may never meet. This place helped me more than any other place except my home. I have tried to give back over time and found that this is a place where you can come and go and still have a seat at the table if you wish. I am thankful for all of you folks on here and for this forum....Good question John, made me think.

CivilMatt's picture
CivilMatt
Posts: 2841
Joined: May 2012

What CSN means To Me:

It has been a life line of knowledge, it is the “go to” Google, it is the arena for H&N patients, it is the Yellow Pages for cancer, etc… It is the only place where nearly everybody can identify with your questions and what you are going through. It is also a place of heartbreak, sadness and humor. If we are going to cry together why not laugh together too.

How Has CSN Helped Me:

I was introduced to many of the stories, information, insights from my recliner as my wife discovered the site in January and proceeded to feed me what information I needed. With every can of Jevity came knowledge and levity (could not resist). On the cancer side of things, this site had me drinking gallons of water since day one. I was so afraid of my throat swelling up and forgetting how to swallow. It helped us with the right questions to ask and like a cancer program it leads us to coming attractions (no surprises). It is not that the doctors and nurses hold back, it is just that my friends here do not hold anything back, cancer with all it’s warts and a dash of compassion to know you are not alone.

What Keeps Me Here:

After all this site has done for me, it was my turn to give something back. After all I am the big supporter of Magic Mouth Wash, Silver Sulfadiazine Cream and Lorazapam (a trio any cancer patient could love). Looking through current and past posts you notice people that have gone before. Skip back 2 or 3 years in the posts or back to when John was a “newbie” and you will find earlier renditions of your self. Similar questions, similar side effects, similar answers, but most importantly individuals that took the time to lend a helping had (or ear). It is only right to participate; if you are able to open your heart and mind to others (we can’t expect John to do it all)

Thank you,

John (the greatest fisherman I’ve yet to meet), Greta, Dearell, Kenneth, Marcia, Stephanie, Eleni, Eustacia, and Tom

Best,

Matt

hwt's picture
hwt
Posts: 1836
Joined: Jun 2012

I recall a conversation with my brother about all of the negativity on cancer sites. He felt the people that recovered had moved on and were out living life and only those that had negative experiences hung around to vent. Then I found this site full of grateful survivors wanting to give back. What a blessing! Truly a group of kind caring people. Heartfelt thanks.

phrannie51's picture
phrannie51
Posts: 3621
Joined: Mar 2012

I don't say that lightly. I found this site within the first week of my dx last March, and have been here every single day since that time. At first drowning in fear and confusion....then finding support for treatment (which tho I knew was doable, was still a pretty crappy way to spend my summer)....and thru all this "after-care"....the support here is unmatchable anywhere else.

All the folks on the "bus" with me....those who had gone before brought me courage and strength to get well. I think I'll be coming here for some time in the future....I owe the site so much, I want to pay it forward.

p

Sam999
Posts: 305
Joined: Mar 2012

This site helped me not slip into depression....it gave me hope and courage to fight it off. No matter if you have a problem or just need to vent..there is always somene there.

John, you are always so positive and so helpful ...thank you for being there for all of us.

Sam

ditto1
Posts: 630
Joined: Mar 2012

its that simple, I would have never manueverd thru this Cancer Journey without CSN and the folks that have posted their fears, wisdom, knowledge, and just what ever was needed to help us get thru the day. I truly do not believe Diane and I would have been able to get thru this with out CSN. I have found friends on this site that I may never meet in the real world but truly think of as friends. As for how I will deal with CSN in the future, I hope to be able to help others as so many have, Skiffin being a perfect example of staying to help us entering this world. So to wrap up my comments on CSN I hate the reason we found or need this site, but I thank God it was there, and I cannot emphisis that enough.

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

I'm here because I'm scared. In 2009, my hoarseness was thought to be a result of voice abuse. So I got voice therapy. Then in 2010, I could not talk enough to complete my two-month stent as a census taker. Then a quick course of radiation without chemo would cure me. Then in 2011, I had trouble breathing on any exertion. Then my vocal cords came out. Vocal cords came out but not all of the tumor. Then another round of radiation and chemo in 2012.

Do you see a pattern? Do you see why I must consider myself a Cancer Combatant rather than a Cancer Survivor?

My self-forecast for 2013 is bleak. Back in March/April of this year, I "decided" not to have a PET and just ride it out. But with a little more healing time, my mood and outlook has brightened. My PET will be done in Oct.

I fought Cancer to a draw in 2009.
I fought Cancer to a draw in 2010.
I fought Cancer to a draw in 2011.
I fought Cancer to a draw in 2012.

I don't expect a fight to the death in 2013. Next year will just be another very boring draw. Rick.

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

On having the PET...

Thoughts and prayers, that 2013 will be the year it all comes together for you...

Best,
John

Hondo's picture
Hondo
Posts: 5643
Joined: Apr 2009

CSN to me is a place where you can get real to life information about Cancer, and to know what is next. It is a place where you can meet new people who care about each other and understand what each person is going through in there journey. I been here from 2009 but all my treatment was in 2002 and 2005, just wish someone would have told me about CSN back then.

Great Post John
Thanks Hondo

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

I pretty much ditto what you said in starting this thread, John. Helps me to help others with the shared H&N C experience.

kcass

funnygurl
Posts: 17
Joined: Jul 2003

Content removed by CSN administrator.

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

The H&N Forum doesn't have any bullying and harrasement that I'm aware of. It's a community of support, a family.

I'm sorry if you don't get that from your forum or expereinces here on CSN.

While I know Joe, he speaks for himself, I speak for myself...

The above was entirely from me, an my expereince and feelings for this site. I have no reason to seek glory ot praise from anyone here, not from ACS or CSN.

While I love this site and the people on it, I could, did and will survive even if the site wasn't here.

As would the many people here on this site would if I weren't here. There is no single person on any of these sites that has all of the knowledge, compassion and answers.... It takes all of us to make a community.

I actually joined this site after my treatment.. I liked it and have stayed since. My way of giving back I guess, definitely not for praise, and the reward I get is from helping others get through what I did...

I'm in no way affiliated with ACS or CSN in any capacity other than yourself...(if you are a survivor or caregiver)....

You sound like you might need a friend and community of support...you have found one on the CSN H&N Forum....Welcome, stay awhile, observe the support from our forum.

Again, I'm sorry you don't feel what I do about CSN and it's community. I can only think and feel that you get out of it what you put into it.

Thoughts and Prayers,
John

funnygurl
Posts: 17
Joined: Jul 2003

Content removed by CSN administrator.

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

My intent was/is not to patronize you....

As for Joe, or anyone on the forum being a moderator of any sorts, I'm not aware. I'm not one, and never been approached.

There is only one moderator as far as I know.

I am here for the reasons that I have already stated, and that is the truth. I have no hidden agenda, no marketing stradegy, or any other mission. Though I will and do highly recommend CSN whenever the opportunity presents.

To be honest, I know little of ACS and it's programs...I've always considered them to be the business side.

As for a "Marketing Stradegy" or mission, I'm not aware of that either. What would be the result of marketing CSN, to others on CSN... Save CSN, I'm not aware that it's in danger....

The people that are on CSN are the only ones that read my posts, and all that they are intended...those people are already on CSN.

Anyways, you have found your way to our forum to vent apparently...that's fine. I'm sure that all on this forum will support you and welcome you in any way that we can...though not negatively, we tend to strive for the positive here.

I'm not quite sure why you chose to come to this forum, and attack me.... Just because you are upset with something that Joe has done, or you are upset with CSN?

I don't post (or rarely) post on other boards. You and I have never communicated before, so I'm not quite sure why you have chosen to flame me. No need for an explanation...

Again, if you say what happened between you and Joe is true, I'm sorry... But that is not me, and I can only speak of myself and my actions.

I'm not here to argue or flame people, so this will be my last response to you concerning.

Thoughts & Prayers,
John

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

What CSN means to me:

It's a place of me's. Quite simply it's a place where unfortunately many are going through what I am.

There is no way to describe the relief, the support or the comfort many on CSN have brought to me at my lowest point.

There is no way to describe the joy, the laughs or the "simple truths" many on CSN have brought to me.

When I think of my family and closest friends, I now also extend that same affection to those on CSN.

Best,

Tim

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

I can't speak to any recent chatroom issues - it's been some time since I was active. I can tell you that I started going into the chatroom shortly after finding this site. It was wonderful. While I couldn't always get advice/info/commiseration quite like I got from this discussion board, I could get something I needed at the time - INSTANT feedback. Cool. And lots of experience with different aspects of treatment.

I can also say that, like many families, there were personality clashes and squabbles. This seemed to run in cycles - a group of "regulars" would evolve, some new folks would join in, some issues would arise - sometimes differences in opinion would turn into feuds. Sad, but not uncommon in a group.

I have seen folks join in the chatroom who made your BS meter go into the overload zone - seen some nasty tempered folk spend just a little too much time lashing out at the nearest folk. Some horribly lonely people use chat hoping for personal friendship and/or romance. I have seen people seem to jump into the chat to "gang up" on someone. I have even seen people who let the mask slip, and show that they are obviously trying to prank or scam the group. One "gentleman" joined CSN because he was jealous that his soon to be ex spent so much time on the site; he came into chat pretending to be a survivor, and quite some time later spent much time and energy on mocking and attacking the group, complete with "YOU ARE ALL DYING" proclamations.

Like most groups you hang out with - if several members are under a good deal of stress, some stressful situations can crop up - some people can be thoughtless or hurtful. A larger percentage of the group, though, is dedicated to being present and available to anyone needing help, advice, or just an ear. I'm sorry, Funnygurl, if you had a negative exerience in chat - from my experience that is the exception, not the rule. Usually you have a group of people switching from mindless chit-chat to full tilt gonzo support in the blink of an eye. I do know that in the past, some people have been removed from the group for bullying or other unacceptable behavior. I can honestly say that the majority of my visits to the chat arena here were posiive experiences. Sorry to hear you wouldn't recommend the site to cancer survivors - there's an amazing amount of info and support here.

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