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Reflections...

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

I was searching for a post from awhile back and came across the one in the link below;

Reflections

It was one of the first where Dawn and myself first interacted...LOL.

A lot of people in the many posts that I read are no longer here for one reason or another.

A few I know have passed, and that is both sad, and actually a bit scary.

Many have just dropped off of the boards, so hopes they are doing well and no longer "need" to be here.

At time during reflection like this...

I too wonder why I still have a "need" to be here.

I don't have that answer as of yet, I'm not really sure.

Best,
John

phrannie51's picture
phrannie51
Posts: 3853
Joined: Mar 2012

I wonder if maybe it's not so much a "need" to be HERE....but a need to give back? I know I won't be going anywhere fast...I feel so close everyone here. I think about those we haven't heard from for a while...and wonder how they're doing, if things are settling down for them...etc etc. Maybe I'm just snoopy :)....Nah, there's a big gap between snoopy and genuinely interested....I think you fall into the "caring...give back" slot.

p

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

John,
you have a "need" to still be here because lots of folks here still need you. You were one of the first people whose advice I took to heart and which helped me a lot. (I think of you fondly whenever I see a jar of DelMonte sliced peaches) I honestly don't know how you do what you do. I come and go from this forum because honestly at some times, it is too hard to read the posts. They are not always good news. I read your thread and I too remember some of the names of those that are no longer here.

But then I also remember those that came here in the beginning, right after diagnosis, and got the first glimmers of hope from this discussion board when they thought that there was no way they could go thru the treatment and yet....here they are today post treatment and giving back to others just starting the battle.

Maybe you keep coming back to tell us to never give up...miracles do happen. Right now we need a miracle for David and Vanessa, so that one day they too can be the "old-timers" on here, giving advice.

CivilMatt's picture
CivilMatt
Posts: 3094
Joined: May 2012

John,

Like P51 I read the entire thread (I thought there might be a quiz).

I find it terrible to think not all masks have eye and mouth holes, what a bummer. I also I had a mouth piece snorkel.

Why I am here, because everyone at the H&N forum speaks “cancer” and I understand them and they understand me. It is like we were all thrown in a pool and told to sink or swim, it is scary.

I am glad that you and many of the “wise ones” are still here. During slow times, I’ve been known to cruise the old threads and I see many of the names I see currently. Of course there are the obvious reasons for you to stay i.e. who is going to post links to the Superthread or post pictures about(recreational) sport fishing. Like Ingrid said you’ve left an indelible food label in my head “sliced peaches in light syrup”

Keep posting old wise one.

Matt

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

Like you guys/gals mention...

I presume a big part is that I do like giving back in my own way... Always based on my experiences, but also usually with a bit of my quirky humor thrown in.

I do agree it's something that unless you have been there, or are going through it, you just can't quite get it.

I have often times compared it to the Marines....

It's a brotherhood.....

Though we may never physically meet, or even communicate other than this board. We share a bond, a lot of which doesn't even need to be spoken to understand.

Just going through it is enough to understand what it is truely all about.

Best,
John

fisrpotpe's picture
fisrpotpe
Posts: 1344
Joined: Aug 2010

for me it's,

if i can help one person over the time i am here in my walk daily and i may never know who i helped, is what it is all about.

the reason is unknown... a good unknown

i man not reply to all post as most have already posted how i feel that that is my auto agreement.

i care about all here, they have my support.

if i could change one thing it would be to praise the "CAREGIVER" more and more, i know i would not be here if it was not for my number one and all the others that stayed with me daily, hourly and by the min.

it's about SURVIVAL along with HONORING those who have gone before us.

Hope! without it the next day is not possible.

God bless all

john

michdjp's picture
michdjp
Posts: 200
Joined: Sep 2011

There are many people here I can say that truly helped me and my family get through some very difficult and scary days and nights.
I have always gave faith in our doctors, however when I needed to know what to expect from something or how to deal with the after effects of something I always came here. One of my first comforts were from John and sweet blood and whenever you guys told me its going to be ok or it's normal somehow I always breathed easier that night. This was something I could not get from the doctors. I still read almost every post and gain from All of them (even if it is to walk away knowing how precious life is). This site is a blessing to all who Need it and when strangers reach out to help you get through (the night sometimes ) you Never forget.

All my best
Michelle

AJW1966
Posts: 69
Joined: Nov 2012

I can't or won't speak for anyone else but i'm so thankful for those here who have been through it and stuck around to help others. I wouldn't be able to just walk away after i have healed. I would want to continue passing on help and guidance to the many others that are going to appear on this site in the future or on other sites looking for help.
If one can spend 30 min watching a tv show just for a laugh......why not spend that 30 min on a forum to help someone? To me that's more satisfying.
Just my 2 cents : )

Alan

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

major points for the folks who help on these forums. but I would like to point out that there are many ways to help battle the beast, on a daily basis. just a few off the top of my head:

* our caregivers need support.
* our kids need HPV vaccinations.
* reseachers need volunteers for clinical trials.
* worthy organizations need funding.

me, I'm now registered for January classes in Language of Medicine and Intermediate Algebra at my local community college--with goal of becoming a "Certified Cancer Registrar" in a few years.

even if we don't all have the time to check in often on these forums, we are all changed permanently by the help we've had in the fight, and we can pay it back in a variety of ways!

Laralyn's picture
Laralyn
Posts: 454
Joined: Apr 2012

You were so supportive and helpful when I was going through treatments!

I'm still here because I clearly remember how lonely and scared I was at times... and still am, to be honest. I don't want anyone else to be afraid of things that are normal during treatment, and if I can share some of what I went through along with the message that the treatments end and you have your life in front of you, then I feel like maybe I can help someone else.

phrannie51's picture
phrannie51
Posts: 3853
Joined: Mar 2012

When we ask the Dr.'s a question, we get answers like "oh, a sore throat is normal"...or..."radiation is like a bad sunburn"....they NEVER say swallowing is going to be like eating glass, or that the sunburn could only be matched by drinking 267 beers and passing out in the sun for 3 weeks. We come here and find out all that we are feeling is normal...that others not only went thru the same thing, but they lived thru it and came out the other side pretty much intact.

We wouldn't have a single soul in this world to give us the real truth without this board. I still have palatable gratitude for everyone here.

p

alligatorpointer's picture
alligatorpointer
Posts: 131
Joined: Jul 2012

John...you wrote : "I too wonder why I still have a "need" to be here. I don't have that answer as of yet, I'm not really sure."

The answer: Because you are needed.

Each time someone new to this board arrives ... scared and seeking information ... if survivors like you were not here to welcome them with warm concern and the benefit of your experience, then where else could they find what this board offers? Without you (all of you survivors who take the time to post and respond) and the solidarity you represent, there might not be enough long-time members to reach out to those new comers who are desperately in need of what can be found here.

I want to take this opportunity to personally thank all of you. I spent this past summer being a caregiver for my son who went through 7 weeks of radiation/chemo for throat cancer. The information I found here helped me in that role more than I can adequately tell you but please know that I am very grateful for all that you shared. Although my son has now acquired NED status and is feeling very well, I continue to monitor this board because I need reassurance that long-term survivorship is possible. It is the 'happy-normal' experiences about fishing and cooking and island vacations that John (Skiffin) posts that help keep my mind-set positive. It is the strength shown in posts about fire-wood chopping and night-shift working after completing treatment that makes you folks awesome role models. Thank you for continuing to be here.

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Wow, this hit home on a couple of levels. First, when I pulled up the old thread, I was immediately struck by the number of old friends that had posted to the original post Skiff referenced. Some of the original posters on that thread are not with us anymore; others I know are still around but have moved on for various reasons and still others I am just not sure of how they are doing, though when I see their name and picture I always wonder and hope for the best. And I remember well when I was going thru treatments; the camaraderie with fellow fighters was awesome - sharing tips and jokes. But the biggest lift for me was when a survivor at 3-5 years out would post something, anything. That always made my day and gave me some inspiration (thanks Hondo, firspotpe, Patrick, josh r to name a few).

I pull the site up about every other week now. The second area where this hits home is how seldom I do post these days. I have tons of excuses why I don’t post much: working too much, lots going on in my own little world, usually I don’t know if I can add anything useful that is generally covered by those that are on here more. To be honest though, from a purely selfish viewpoint, the brightest spot I get from the site these days is to see the people I came on board with posting that they are still doing well.
I need to remember what I said earlier and if that it will help someone to see a mid-timer (not long term yet) post something, I need to do that. I’ll try anyways.

Sending my best to all my old buddies and wishing everyone going thru tx the best!

Positive thoughts!
Greg

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

I'm here for two reasons. First as an "old timer" I hope it helps newbies realize they will probably survive. I did,'t know about this board 16 years ago and just wandered through treatment without really knowing what was going on; I lost control over my life and thats not a good feeling. Second thing is that I, and a few others on this board, are having serious long term after affects. I know this probably will not impact most of the folks on this board but if just one person starts having problems and can remember that it has happened to others then that is good. It cost me thousands of dollars to learn these lessons and I feel they need to be passed on..

Grandmax4's picture
Grandmax4
Posts: 597
Joined: Dec 2011

you never leave Skiffin, you seem to know exactly what to say to ease my mind or make me smile, even laugh out loud.
I'm doing great, but plan to pay it forward...people don't wnderstand head & neck...it's too complicated to explain to them, so I come here to learn, vent,smile and cry...I feel like you all are my family

Grandmax4's picture
Grandmax4
Posts: 597
Joined: Dec 2011

you never leave Skiffin, you seem to know exactly what to say to ease my mind or make me smile, even laugh out loud.
I'm doing great, but plan to pay it forward...people don't wnderstand head & neck...it's too complicated to explain to them, so I come here to learn, vent,smile and cry...I feel like you all are my family

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

Each and everyone of you are family.....

So I guess I might be one of those family members that you are stuck with, LOL...

They always say you can't pick your family, right.

JG

CivilMatt's picture
CivilMatt
Posts: 3094
Joined: May 2012

John,

You are like one of those family members you are always happy to see

Matt

ditto1
Posts: 634
Joined: Mar 2012

John all of us on this site most likely have been blessed with many friends and family but other than our caretakers and a few family members most were on the outside looking in, but the folks on this site I always felt were like the close family members we all hope to have. I cannot tell you how important you were to Diane and I when I was 1st dx back in March. Many others on this site have also filled many roles that I needed filled at certain times. So Brother I hope you take this site as your calling and as long as you are able and chose to you will be a shining star of hope for many more to come. A special thanks from me.

Noellesmom
Posts: 1317
Joined: Aug 2010

are the luckiest people in the world :)

lts's picture
lts
Posts: 75
Joined: Nov 2012

I read more than I post. I'm still new to this. Done with surgery and will start rad tx's in like two weeks. I always feel relief after spending time in here. Thanks

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