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

Powerful words!
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 said:

Here
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

an evolution
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.

A knot in my stomach
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

CANCER 101
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.

Fyrewoman said:

CANCER 101
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.

Bonjour....
and welcome to the family, neighbor.

Larry

you asked
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

CivilMatt said:

you asked
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

CSN
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 said:

This site is my sanity keeper.....
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

This site helped me not slip
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

Scared: Plain and Simple
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.

CSN
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