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Losing touch

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

I feel like I am losing touch with my CSN friends. Every time I come to the site I am seeing more and more people I don't know and feeling less viable on the site.  I miss everyone and feeling like I can contribute.  I am now seeing people who started the journey around the same time and shortly after who are now recovering. I am glad people are coming through to the other side, but it is a little difficult being on the outside. 

phrannie51's picture
phrannie51
Posts: 3679
Joined: Mar 2012

losing touch with us....but generally speaking....all the folks you've known here are still here!  I've been keeping up with David's progress on Caringbridge....sounds like you two had a nice little trip to see his brother....I thought "what a nice thing for you both to get out and go somewhere!!".

p

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Hey Vivian,

i know what you mean at times. I am usually better when I check in intermittently between tasks here at home... After being off to the doctors all day, I saw a lot of new names too! Made me double check the forum!  Unfortunately, I think this beast  has expanded rapidly through a generation or two, so here we sit with many more.. Very sad that more have the challenges. 

But as my grandmother used to say... There's always room for one more at the table!

Kari

wolfen's picture
wolfen
Posts: 1194
Joined: Apr 2009

WE are all IN this together, whether as patient or caregiver. Please don't worry about not contributing all the time. I  have learned, over the years, that sometimes I have nothing worthwhile to contribute at the moment, but maybe later I could offer a helpful suggestion or just a cyber hug. There are many times, I simply post just to hear someone reply "I know what you're going through, and I care". Right now, I'm unable to post many uplifting things, so I try to keep my mouth shut(that's really hard). Most people don't want to hear sad stories all the time, and who can blame them.

I truly have been thinking of you and David and hoping that things are going better.  I know you must be busy.

Yes, there are many new members. I find this to be especially true on the Colon Board. I do find that as some members achieve NED, they don't post as often. For some, it was just a horrible nightmare. Some of those wonderful people stay behind to mentor the "Newbies". Some of us just learn to live in the never ending nighmare.

Luv,

Wolfen

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

Here's my 2 cents worth.

Many of the "old guard" you started out with don't post as often it seems (I'm one of those for sure).  I feel too there are so many new folks, that I don't fit in as I did...it's like looking back at that class of 2012 and not being there :)  If you know what I mean.  However, the flip side of that is we rode the bus together and many of us got off at different stops and went about out lives.  It would be wonderful to see this site go away because there were no new classes comig on.

If I look back and read posts from when I was in the thick of it...many of those folks are doing well and moved on and of course some are no longer here with us, but the majority of them are.

I get comfort when I see the old guard like John (skiffin), longterm, phrannie, kent case, billlie, you, hwt, katenorwood, and many more I can't think of at the moment post , so many of my class of 2012 are like family.  The new folks on here will be like you and I, they will help each other, share experiences and certainly get great advice from the old guard just like we did.

I truly wish at times I was not so busy.  My mom is in the early stages of dementia and I am spending an enormous amount of time with her on the phone, our little resort ski town is in full swing and since I am in the hotel biz I am quite busy ..and to be fair, I'm also hunting and playing in the woods every chance I get (so I can't blame it all on being busy) ....

Don't feel like you are the odd one out...your'e not, just in a different era ....and your input and experience can help so many on here.  I too keep up with you and David on caringbridge.  Your also prayed for on the prayer list ....so you and David are not far to me :) :) ....

Keep coming on and keep us posted .

Tim

Mikemetz's picture
Mikemetz
Posts: 341
Joined: Nov 2011

I think it's only natural that many people who are fortunate enough to win their battle with cancer come back to this site less often.  The beast becomes less and less consuming, and they can return to the new-normal of NED. If they have been good participants on CSN, hopefully they will have inspired some of the newbies to be the same--and the cycle of support and friendship goes on, as it should be. Same great community, just with a different mix of members over time.  I think the number of newbies is in direct proportion to the growing number of new HNC patients around the world--so that's a bad sign. In my own dream, there are no newbies--ever! 

I come to CSN/HNC about 4-5 times a week, but I find my self posting less often because so many of you do such  a great job that I have little to add.  So, know that I'm looking in, watching and caring, but picking my times and places to post.

 

Mike

 

Ladylacy
Posts: 471
Joined: Apr 2012

I come on here a lot and read the posts and answer some of them.  But lately my posts have been disappearing so I don't know what is happening.  I think too that since H&N is such a broad area for cancer treatment that it is hard to find answers to some of our questions so we don't post because others haven't experienced what we are going thru.  Yes there are many new people starting their journeys and that's because H&N cancer is on the rise.  My husband has been on his journey since 2010 but didn't find this site until last year.

I am always happy to hear about those progressing extremely well and sad to hear about others.  Please keep posting about your husband and answering anyone you can help.  It is so important to know what others have experienced and their journeys and this information really helps others.

Our doctors tell me that I know alot about my husband's cancer and I tell them that's because I read a lot on the different cancer sites to help us know what is going on so these sites are very important and have lots of great information from great people.

Sharon

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

Vivian

you are one of the strongest women I have ever seen on these boards !  So, don't sell yourself short.

You give back in many ways without saying (posting) a word.

Anyone who has followed your story knows that.

Continue to have hope that you are working your way towards David's full recovery with a lot of folks behind you.

 

Grandmax4's picture
Grandmax4
Posts: 583
Joined: Dec 2011

the same way Vivian, but, yet I keep an eye on the board in case there's someone I can help or one of my friends" is having a good or bad time of it. You and David have become like children to me, I think of your struggles often and wish there was more I could do. I keep up on Caringbridge also.

It's sad to see so many new names and realize the suffering they will be going through,but, yet at the same time know there's light at the end of the trials...never feel like you're on the outside..we all care about you very much

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

Each of you are a huge blessing for David and I.  Not that I am glad he had BOT cancer, but without that diagnosis I would have never found the support I have found in the darkest days of my life.  When David developed Plasma Cell Leukemia this is where I came to cry and be comforted.  As you know there are no support groups for Plasma Cell Leukemia.  None of the groups really want me.  Multiple Myeloma stays silent, Leukemia boards want to say we are Myeloma.  All the while I try to cope with a husband with a 3% chance of making it to Christmas.  You guys have held my hand (virtually),let me bare my soul and have prayed for us.  Here I go again, weeping freely with thanksgiving in my heart for you. I hope someday I get to meet many of you (a bucket list thing) and give you a hug and thank you in person.  Thank God for you and CSN.  

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Hi Vivian,

I've only been part of the boards for a short time but I'd like to offer my perspective.

This is a unique social network in that we all share cancer. From all perspectives, the patient, the caregiver, the children and family, we all fit into a piece of the puzzle that only those in our shoes understand. In a forum like this as well as on other forums unrelated to cancer, we're able to share via the written word, feelings, thoughts and emotions we ordinarilly wouldn't share in a face to face setting. It's not common to sit around and talk about constipation or phlegm is it? :)

There are distinct similarities as well as distinct differences in this virtual setting that distinguish it from other virtual settings. Where it is different in my opinion, is in the fact there are so many truly caring, good hearted people here. This is a gut feeling I have and I've learned to trust my gut. Cancer changes us. Whoever we were before cancer, we're not the same now. Cancer has a way of making us look at ourselves in a way we never thought we would. We become finite, vulnerable, helpless and a dozen or more adjectives that aren't necessarily positive. On the contrary, one only need look at a news forum or political forum to see the hatred that permeates society. 
When cancer comes into your life, your perspectives change (at least mine have). Things I felt passionately about before don't have the same significance.

Where this virtual setting is the same is in that it's a constantly changing entity that ebbs and flows depending on the number of members and their participation. For many, as mentioned, there is a season of need. For some, it is an emotional bridge that's needed to cross over the rivers of life before, during and after cancer. 

One way that it's amazingly and comically (in my opinion) similar is in the screen names and thumbnails we use to identify ourselves. In real life, I'm sure we're not black, white and furry or carry stuffed toys around in our mouths ;) I can assure you people don't call me fishmanpa! In reality, when you exit the screen you're on, the virtual world ends and real life begins. When I post, you're only getting a minute glimpse into the person I am and visa versa. 

I met Marcia on a dating site. For a time, she was just a thumbnail, pictures and words on a screen (she typed with an accent). She soon became a voice on the phone and then finally and thankfully, a real, warm and loving woman who I fell in love with. While we can project in a virtual setting, it's still virtual and in a virtual world, it's only as real as we make it. Life goes on. People heal, live, move on and sadly pass from this earth. The internet and virtual forums like this expose us to and allow us to experience the heart of others, if even for a short time. We should value those times, learn and be thankful for having shared them. I for one am very thankful to have found you!

"T"

 

ditto1
Posts: 630
Joined: Mar 2012

as part of the 2012 bus ride we have all come on this site knowing no one and very little about our dx and what to expect.   I remember the 1st post I did titled "Is the fight worth it" and I must have had at least 50 responses from total strangers at that time and a year later they are not strangers but granted cyber friends but friends no less.  I to do not post quite as much because I decide if I can add anything that has not already been said to repond to the post.  The one thing I know is that many folks that was with me in 2012 were on here long before I was still post, Skiffin, Longtimesurvivor, just to name two.  Now folks like P51, Tim and Matt to just name a few are there for us now.  So remember you and David are in that category of the ones we and of course the newbies look forward to seeing how you are doing whether thru HN or Caringbridge.  So sorry you are Veterans of HN so rather than feeling lost, remember you in the lead now and we all will be here for you and we know you and David will be there for us.  Finally Im sure many of the newbies will be looking forward to your post to help them. plus you are now being imbraced by new friends.

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

"T"  ... you write eloquently.  That was beautifully stated.  Your perspective is a very valuable asset here.  Thank you.

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

LOL...

T, I'm going to post up an old thread on the subject...check it out.

There are some very funny origins, as well as some interesting perceptions of what the various forum names were derived...

How Did You Chose Your Screen Name

John

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Thanks John,

Typically there's some logic behind the choice. I've had this screen name since 1995. I have the same email account too. The "fishman" is because  love to fish and the "pa" is because I lived in PA. That is my ugly mug in the photo though ~lol~ 

My given name is Mark... the "T" is the first letter of my last name. because of the mispronunciation of my last name I was dubbed "T". It's stuck through the years.

"T"

osmotar's picture
osmotar
Posts: 953
Joined: Jul 2011

Good morning ...I know we have never chatted, I don't post often here anymore,but do look at the site several times a week...I see you posted your from PA ..me too,where are you in the Keystone state? 

 

Linda

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Hi Linda,

I grew up in S Jersey, Cherry Hill. Exit 4! ;) I lived in PA, Philadelphia for a number of years  as well as Delaware County.  I'm now in VA in the beautiful Shenandoah Valley ...

"T"

 

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

Fishman "T"

wow, you write so well.  (And I do resemble that remark.....dog with stuffed toy and all, LOL)

I think that we "older" survivors find a great comfort in helping out others coming along after us.  I don't do it nearly as often as I would like and I certainly can't do it as well as some of my own mentor survivors like Skiff, Hondo, Goalie & Dr. Mary, Deb on the horse, Stacey, and others.  They were all there to help me with my journey.  There is definitely something about fighting the cancer fight that changes a person.   I feel like the reason I have survived is that I am supposed to be available to help others find their way.

Somehow you end up feeling very very close with folks who have and will walk down the same path as you.

One thing about the folks on this forum....you can stay away for long spurts of time, check in rarely and it always feels like you never left.

Ingrid  (and Barney the dog)

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Hi Ingrid,

Thanks for your kind words. I'd have say your dog looks like a Barney :) I see he's fond of his toy too ~lol~  Our cat Socrates has a few favorite toys that he carries around. We find them in our bed when he wants to play and he'll bring one to you when he wants to play a game of fetch or tag. 

I don't know what you consider older but most of us in this boat with H&N are a bit older. I'm well past the half century mark as of Sunday and definitely feeling "older". 

You are correct, there are very few forums where you gain a bond like I've seen here. Many forums are just hotbeds for negativity and hate. I can't see carrying that kind of attitude around 24/7. Cancer truly makes you realize how fragile life is and because there are no guarantees, we who suffer with this horrid disease as well as our caregivers, family and friends, find common ground and look at the same finish line. I'd venture to say the finish line we cross is more rewarding than most.

"T"

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

Hi T

I guess I should have clarified my reply.   When I said "old", I didn't mean in years.

I meant in "been down this road before", "experienced", or "previous survivors".

I am older than most of you probably so no offense intended.

 

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

No offense taken at all... Marcia will vehemently object but I'm as old as moldy bread. But at least with moldy bread you can make penicillin ;) 

Seriously though... health issues take a toll on you. When I see pictures of me prior to my first heart attack (2007) and now? I'm paying the price. I can only imagine how tired I'm oging to appear aftr all is said and done after treatment. At least you won't see grey hair as I do the Mr Clean thing and shave my head. And if I have to have chemo, I'll save on razors. On the bright side, if i have to have chemo then it'll take care of the rampant hair growing from my nose and ears! ~lol~

"T" 

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

It's not just you...

Even I feel like that at times, new people seem to come in waves, LOL...

It's the same with good results and bad..

At time, there's a ton of bad results, what not that just frankly can scare the crap out of you (other than Kreg)... But then you'll see many NED's pop up to balance it out I gues...

I guess with the size of our community, you just see how things tend to cycle.

You're onboard, be here when you can and feel like it, take the time you need for you and David...

John

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

It seems that many cancer patients enter a tunnel, travel thru it, and come out better on the other side. But David and I seem to be in (not a tunnel) but a high-energy particle collider. The d?mn device is circular. So David and I just spin round and round, every once in awhile colliding into something. Or do we just bump into ourselves? Rick.

hwt's picture
hwt
Posts: 1906
Joined: Jun 2012

Always thinking of everyone but unable to check in daily like I would like to. Spent 3 days last week admitted to hospital trying to pass a kidney stone...it's still there! Soon to start HBOT which will take a good 1 1/2 hours out of every day for 6 weeks just so I can then get some implants in place of my temporary denture. I do try to pop in and see how everyone is doing and lend a hand with others in the journey when I can but not a day goes by that I don't think of everyone and wish them well.

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

I've had a couple of kidney stones. Both treated with lithotrypsy. (Lucky me: Really lucky me.) I hate to think about the pain for just waiting for a kidney stone to pass. The good prevention for kidney stones is a lot of water. Of course, water is too late once you have the stone. My stones were huge (11 mm ++), and consequently lithotypsy was needed to break them up. Even after lithotrypsy, the fragmants were slightly painful to pass. Rick.

Lithotrypsy: sound waves foucused on the kidney stone to break them up. The patient pees blood for days. I was anestheitized during the lithotrypsy procedure itself. Rick.

Hondo's picture
Hondo
Posts: 5734
Joined: Apr 2009

 

I think people just come and go as part of life, even though I don’t post as much as I use to do, I still stay in contact with a lot of my CSN friends by e-mail or just called them on the phone sometimes when I am able to talk. I am working full time and taking care of my online Ministry and it puts a lot of strain on my time. I just about lost my voice so my preaching days is over with but I still write my sermons and posting them on line. God is so very good, what Satan took away God turned into a blessing as I reach more people now then I ever did preaching in a Church.  

 

God Bless

Hondo

CivilMatt's picture
CivilMatt
Posts: 2920
Joined: May 2012

Hi Vivian,

 

Nothing like bringing up the rear, before this thread drifts down the line.  I would like to say you have been a very poignant and straight forward H&N participant that writes from the heart.  While each of us have been thrust into the cancer scene, with back up support (family, wives, husbands & friends).  You have navigated this cancer menagerie almost all alone.  I may be a bit sexist, but I am always glad to see the women respond to you as I often can not think of something to say and they do so well.  I truly hope for good things to happen for you and David.

 

Always welcome here,

 

Matt

staceya's picture
staceya
Posts: 701
Joined: Jan 2010

I don't write much, and when I do, it tends to be silly and about goats or cats.

But I am blessed beyond measure and eternally grateful for the helpful posts of others.

Below, apropos of nothing, is a cute picture of a hedgehog. I once had a friend who had a hedgehog as a pet.
The hedgehog was in love with the toilet cleaning brush.
I am sure I have posted this before, but I have been laughing about it for 30 years and am probably going to continue to find it hilarious.
Love to you ALL

PS. Did you notice this post was not about cats OR goats. I had forgotten about hedgehogs.

 

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

This post leaves soooo much to my abi-normal sense of humor... I just better refrain, LOL...

But, I do miss getting your goat...

JG

staceya's picture
staceya
Posts: 701
Joined: Jan 2010

when you least expect it...

.

cureitall66's picture
cureitall66
Posts: 860
Joined: Aug 2012

Never alone my friend. We're still here. I'm not planning on going to far. This forum has been a God sent for us and I want to be able to give back to as many as I can. I know our journeys have taken us in little different direction, but we're still all here for one another. We're still trying to fit into this new world and get through the recovery. The days of the unknown are tough...we don't have a scan until the end of the month. But, still we know we must keep moving along and work with what we have for the day.

I'm sorry I haven't posted much on here for everyone....my job has me at high demand right now and I do try to get on here in the morning to check on things. I hope everyone is doing well.

I still continue to follow the caringbridge page. Keep the faith girl!

~C 

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

OK a hedge hog in love with a toilet brush is just down right funny.  I can see how the two would bond very well.  You people sure have a way with words.

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