I have been reading a lot on these boards and follow certain posters that are good about posting details of their treatments... Well some of these posts go back many years and the posters seem to have had successful outcomes, but haven't been around.. I am DYING for updates! I know this is normal that once things are good again, many don't have a need to come back.. but would it be OK if I just sent a private note to the posters to ask for an update on their lives??
sometimes live and responsibilities catch up with you and all of a sudden there "appears" to be no more time. ...
M
I remember you, Markus! Aren't you the one who had that really neat avatar with the penguins? You're right about life and responsibilities catching up. And JDR - I think it's true that once things are good again, the need to come back gets replaced by other things. I was away for quite a while and came back recently when my son was scheduled for a CT scan and I felt a little bit like people who only talk to God when there is a problem. Well, I did that, ( talked to God) but I felt I could get quicker answers from the OCF friends and I did! I am sticking around now, even though my experience as a CG is not too recent anymore, so I can see how everyone is doing and in case I might be able to add something useful. I would think that sending a private note would be fine or maybe email if there is one listed for the person. A PM may not be seen if the person is not currently posting, though.
JDR
IMO no problem with sending a PM although as Anne Marie noted, posters on sabbatical wouldn't read it). If their profile has a private email, you could also use that since the poster has chosen to let that information be active and available to the public.
I like to think that such posters have recovered so much from this terrible cancer that it's more a bad memory than a chronic illness. I don't post as often as I used to primarily because some responses are better off as positive success stories. I don't want to bum people out when they ask about recovering from TX and/or dreading a recurrence when a lump or symptom reappears. On the other hand, I feel it's comforting for some posters to be able to compare their recovery very favorably to mine. More importantly, I continue to post so that new OCF members can realize that even if their worse nightmare comes true and the cancer does come back after TX when they thought it was all gone, that life can still be good.
Charm
I think it takes a special kind of person to be here posting several years after successful treatments (we all know why the less than successful ones are not posting any more). The cancer experience changes people profoundly. Some of it is actually for the positive, but for some the negative outweighs that. The fear involved in it all, the uncertain which is unsettling, the pain. All that they would like to forget about, and the idea of it coming back can be over powering for some. So they decide to stay away from the thoughts and memories of it as much as possible. That also means stay away from these boards and the bad news they too often hold.
I don't think this is abnormal in people. I wish that it were not so, since they are a wealth of knowledge to share with others, especially the many newbies that come. Many old posters tire of offering up the same answers over and over again. Gary told me that was why he had been absent after many years of posting, and I understand. I quit teaching basic flying for this very reason.
Posters are also the life blood of OCF's financial ability to even exist. 70% of all funds that come into OCF, come from people directly associated with the disease or their families. They are the foundation's core donors. When they get the "I want this so far behind me that it's not even in my rear view mirror" perspective, besides not being here to write, they are also not around for the foundation as donors, not even once a year at Xmas. We really have no major corporate sponsors that we can count on. Sure, we get donations of sponsorship of $500 or $1000 from J&J and a couple others at a walk event once in awhile, but not the 6 figure sums that they give to the big charities.
Bottom line we don't like to dwell on things negative. Life goes on, hopefully richly - people thrive again and do not need the help these boards offer. But you can also look here and see the friends made that stay in touch, sometimes not through the boards, and those that stay with the foundation that saw them through the questions and uncertainty. People here will show up for walk events to meet with each other. For many posters with original post dates that go back years, this is a place of family.
I don't say it enough but to all those that continue to support others long after their trials are over, that offer up the sage advice to help make good decisions, that listen to the fear and lend their words of courage, all of you are the "soul" of OCF. Without out you, much of what OCF is - becomes nothing more than web pages and software, and a couple of challengers out in the field tilting at windmills in Washington DC, and lecturing at universities so the next generation of dentists and doctors will not miss the opportunities they have to catch things early or head this off completely.....
I think putting email addresses are for people to use. Go for it. JDR I get many emails and always reply and enjoy the ones I get.
uh..when i get PM's I get a notification of same in my email. So if the person you are trying to reach still has the same email that they put in their profile, they should get an email containing the senders name and the post.
Deb
[quote=debandbill]uh..when i get PM's I get a notification of same in my email. So if the person you are trying to reach still has the same email that they put in their profile, they should get an email containing the senders name and the post.
Deb [/quote]Deb,
This is true when you go to "My Stuff" and then "Preferences" and choose "yes" to the following question:
"Do you want to be notified via email when you receive a private message? __Yes __No"
If the member did not answer "yes", then the PM stays unseen in the forum mail until the user logs in and reads it.
JDR,
You said ironically, I feel, "I am DYING for updates!"
Please realize we have lost many good people to this cancer, and many of their outcomes will never be known by those of us who have followed, cared about and participated in their lives through these boards. Their contributions live on in their words of struggle, humor and advice; words which have helped countless others.
I like to think that because I have vicariously known them, I have become a stronger and more compassionate person.
On this "All Hallows' Eve", I find comfort in having been touched by those who have gone before me. And...
Thanks to all of my OCF family!
Thanks RPCV! Now I know why I did not get an email notification re a PM. I just changed it on "my stuff" so now I'm cool!
I liken it to family that have moved away .You promise to stay in touch,and for a while you do but then life takes over and you move on.
I left because my bereavment councillor told me i had to step back.When you come back after a while,you don't know people and they don't know you,and although i log in every day i only post on familiar names threads.I also feel concsious of Robs poor outcome in my signature line could frighten new members.I have always been happy to reply to private messages from anyone who needs my help and i always will,its the very least i can do after the support i got,and i keep up with all the old faces on face book without it having to be about cancer.
And of course there is always the island....
First - Liz thank you so much for staying "active" on these boards. Unfortunately death is sometimes a reality of any type of cancer. Your personal experience with all of this is so invaluable. I think with most "health based" message boards, people take what they want and then when they are through treatments or have lost their loved one they move on. I stay active on these message boards because I have been helped so much by everyone and if I can answer a question for someone or offer some small support, then I still "belong" here. This is going to sound dumb but I am also slightly paranoid that if I leave that John's cancer will come back. I know that sounds silly but that is my reality. So....here I will stay until I feel it is time to move on.
Again thank you so much to all the "active" posters. Your knowledge and personal experiences are greatly appreciated.
Agree Liz that your help is invaluable. And also agree with Wanda that people need to know that death from this disease is a very real possibility.
There are plenty of us with good outcomes and that is one of the other reasons why I stay..to help folks see that you can indeed come out the other side of this even with a fairly dire diagnosis and also to relay what our journey was like and what we learned.
Thanks as well to all those that helped us when we needed it!
Deb
Many times I find myself "popping in", scanning the messages and if things look to be adequately covered, then silently moving on, until a topic that I feel I can offer a bit of assistance comes along.
I guess what I am saying, just because I happen to be quiet does not mean I'm not here or paying attention
.
Kevin
I just recently 'returned' to the OCF board after several years absence. My ex-husband, father of my son, has been diagnosed w/oral cancer and I came back to get information about treatments & any improvement in outcome statistics, for my son. When my brother was diagnosed, I found this board tremendously useful & even comforting.
I left the board after my brother died because it was upsetting to me to read about others who also lost their fight. I became very fond of some of posters and I cried when any of them had a reoccurrence. Like so many others, I wanted to put the cancer experience behind me, way behind me. Also, I feel that the best advice & wisdom comes from the cancer survivors themselves & primary caregivers, those currently fighting the fight.
Also, my brother's outcome wasn't positive, his tongue cancer metastasized to his lungs just two years after completing treatment. Like Cookey, I felt his outcome might dismay newcomers. However, I do want to say that he did have a very good healthy year, almost normal, his second year after treatment. He managed to visit Jim Morrison's Grave in Paris (he had neuramyopathy in his feet so it took some effort to walk to the cemetery). This was on his life list of things he wanted to do. My point is that after the horrors of treatment, there were good times with his grandchildren, with his wife in Paris (she didn't visit Jim Morrison's grave) and life was good.
Keep up the good work, every one of you! - Candace
Liz - How nice to see you checking back in! I've thought so much about you these last few days and wondered how you were doing! I followed your posts and cried with you many times. I felt your strength and compassion and caring and it helped me to be stronger in caring for my son.
Its knowing things like that that make it all worth while.I will never really leave OCF its just time to take a back seat until needed again lol.I dont know if you have ever done this Anne Marie but i sometimes go to the OCF members list and just browse through it.So many names bring back memories,even a few tears, but a part of my life i hold in my heart and always will do.Love to you both xxxx
Liz,
There is someone currently on this site that could really use your experience right now. Her husband is terminal and Tx is not an option.
I don't post as often as I used to because I don't want people to be discouraged by Neil's outcome. I would welcome pm's however. I check in here almost everyday. While it is true that life goes on I still feel an intense attachment to those on this board.
I also "pop in" from time to time and if I don't have anything to add, I still like to take away some new information and, of course, catch up on Oral Cancer in the news, etc.
Just reached 8 years on October 23rd - still clear but not without some weird things popping up from time to time - all which clear up in a week - one of those changes that happen to 99.9% of the population but a pain in the ass and the confidence just the same.
Take care everyone - stay well!! Beth
Hi David please feel free to pass on my details to her if you think i can help x
I cry every time I visit. It helps me and I try to help others where I can. I am pretty busy now with Hyperbaric treatments, vital stim treatments and prepping for the CPA exam. busy, busy, busy....
I feel so lucky to have avoided radiation and chemo with this cancer. There seem to be few who fall into the surgery-only category. That is one reason why I hold back a bit even though I would like to return the help and advice I received when I first joined nearly one year ago. I'm battle-scarred and I lisp but life has otherwise returned to near normal. I know that I can fall off this health pedestal at any time but right now I just feel fortunate.
Of course there are challenges. I'm going to a photoshop course tonight for the second time. I was very aware last week that the others looked at me strangely when I introduced myself. I just really don't care. Maybe it's the anti-depressants suppressing anxiety ... Maybe I should worry more!
Anyway, much encouragement to those of you experiencing treatment right now. And I'm enjoying seeing people's updates on facebook.
I read this post when it was added in late October. It is something that I have thought about myself and waited to see what the responses were from our members.
Great reply from Brian and others and for the time being I am happy to be semi active here.
I still think I can give some help and advice to the forum but mainly concentrate on those that have had the same treatment as me. Also I try to be there for all the Australians and New Zealanders as there is nothing as valuable as this forum locally even though our Cancer Councils are slowly getting there.
I am always happy (and sad too) when they have found OCF as I know they will get the best help here.
Many reasons have now been given for people no longer posting and it has also been mentioned that not everyone makes it.
There are caregivers who lose their partner or family member as Liz did. (Great to see you here Cookey).
Then there are others whose families let us know that one of our members passed away.
I remember people like Minnie, Stephanie, Patty and recently Pete. They are still my FB friend and will remain there while ever their profile still exists.
Gabriele
I suppose I am one of those who checks in only occasionally now that I am over 4 years out. I think in my case it just seems to be too much of a reminder to check in and scan posts from time to time. It is difficult for me not to get a bit depressed if I scan and read too much in many cases. I do admit that when it is coming up time for me to have an updated CT scan and physical check by my ENT I feel a need to check in on the site. Tomorrow just happens to be such an occasion as I have my scan tomorrow followed by the ENT meeting, scoping, etc. a week from tomorrow. I still get a bit "antsy" starting a few days before the next scan as I am sitting here tonight. A clean one this time will put me at the 4 year and 4 month point and it all comes back to me in great detail at a time like now.
Bill Dozier
Bill, I know how you feel. Best of luck:)
Good luck Bill great to see you xx
It's so good to see some familiar names checking in and know they are OK. Bill - I hope today goes well for you and that the "antsy" feeling can go away soon!
[quote=RPCV][quote=debandbill]uh..when i get PM's I get a notification of same in my email. So if the person you are trying to reach still has the same email that they put in their profile, they should get an email containing the senders name and the post.
Deb [/quote]Deb,
This is true when you go to "My Stuff" and then "Preferences" and choose "yes" to the following question:
"Do you want to be notified via email when you receive a private message? __Yes __No"
If the member did not answer "yes", then the PM stays unseen in the forum mail until the user logs in and reads it.
JDR,
You said ironically, I feel, "I am DYING for updates!"
Please realize we have lost many good people to this cancer, and many of their outcomes will never be known by those of us who have followed, cared about and participated in their lives through these boards. Their contributions live on in their words of struggle, humor and advice; words which have helped countless others.
I like to think that because I have vicariously known them, I have become a stronger and more compassionate person.
On this "All Hallows' Eve", I find comfort in having been touched by those who have gone before me. And...
Thanks to all of my OCF family![/quote]
Yea, I realized what I had typed AFTER I posted...sorry I posted it that way!
Thank you to ALL for your responses!!!
Bill,
Thinking about you and hope you had a clean bill of health today.
Bill, thanks for posting. Its so nice to see you are doing well and that you are now over 4 years cancer free, congrats!!!!! It seems like many posters stay away for the same reasons you mentioned, it brings back too many bad memories. Thats very understandable, battling oral cancer is so traumatic. Best wishes with your latest check up
Thanks to all of the well-wishers. The scan went without a hitch and I see my ENT next Thursday. I hope to get a positive call from one of the nurses there at Emory as happens sometimes. It's when they don't call that always worries me! I figure that they won't give bad news over the phone and wait for the Doc to so advise.
Bill Dozier
Best of luck with the scan result Bill.
Hope you don't have to wait too long.
Gabriele
Hi all,
Sorry I haven't been posting for ages.
Martin is doing ok. He still has terrible pain in his neck and shoulder, but he has found out that half of the pain is due to a slipped disk in the neck that is pressing on his spinal cord. He will need another operation to fix that. It should be after Christmas. In the meantime he is being tried on some new painkiller. He has Fentanyl patches at the moment and they seem to help a bit.
Apart from that Martin is now 2 years in the clear.
Oh, another happy note we are having a baby in March, quite unexpected but we are really happy.
Congratulations on the upcoming bub Cecilia.
Even though Martin is still having issues 2 years cancer free is a great milestone.
Nice hearing from you again.
Gabriele
Sorry I haven't posted for a while. I still drop by every now and then but normally just lurk in the background. Somedays I try to offer advise to members on the forum but just can't seem to get the words right and sending a virtual hug just doesn't seem enough. But if ever needed I'm here.
On the plus side, Steve is still going well with no sign of the cancer. Still waiting for his jaw surgery though. Good old Australian public health system takes a while sometimes. Steve's weight is still a never ending battle but we'll get there.
Cecilia that is wonderful news for you and Martin. So happy for you both.
Well, I'm trying real hard to get back here more often.
I think my life started to go crazy when my wife decided that we should downsize and move since I was retired and she was retiring in June. Selling a house, packing it up, moving, unpacking (still doing that), have kept me so busy.
In additon to that we spent days on end visiting the hospital as two friends were in at the same time. My dental partner and best friend (for over 41 years) passed away in August after battling multiple myeloma for 8 1/2 years. Our other friend is doing well.
We managed to get away to China for 2 weeks in October and I have made a pact to try to visit the forum more regularly again.
Over the past 5 1/2 years I have only been away from the once before. It occured after a couple of members passed away and I started getting depressed.
I have always welcomed PM's and direct emails as many people over the years have felt more comfortable asking me dental questions, off the forum.
Well, I was away for awhile due to depression, and just life going crazy. I am back now and do check up regularly. I am still trying to figure out why I am having so much pain in my right arm, and my neck muscles are gettting stiffer by the day. Other than that we are plugging away.
ON a happt note, My SIL just had triplets, 17 weeks early, but they are doing well. Mom, dad, and big sister have gotten to hold their hands through the incubators. I have yet to get to go visit them, but will over thanksgiving break. My husband is going for a quick trip today.
For me it's a little bit depression but mostly I'm overwhelmed by the forums. I still can't figure out how to maneuver from one to another and when I go back to try to follow a particular subject, I can't find it again. Sometimes I can find it if I remember who posted recently and I can backtrack from their user list but that doesn't always work. I also get so caught up in so many subjects that hours pass and nothing gets done. Still, I appreciate all the info and advice so I won't give up completely.
Pat - to keep up with what is happening recently, I just go to the top of this page, and click on where it says "Active Topics" and then click the same "active topics" on the pull down menu.
It seems that every timer I think I am finished a new medical situation pops up to keep me off track. My "recreation" is outings to the grocery, Walgreen's pharmacy and medical appointments for myself and my husband. As one of my sisters says: "these are supposed to be our golden years but they are slightly tarnished." I am trying hard to get back to a normal life so no longer am able to spend the time here as I would like. When I miss a week or even a few days it seems that I am not able to catcth up so I start at the last page and try to read forward. I really miss having the time to check the forums regularly and reply as often as I used to.
Some of us are still here, lurking, and feeling a bit "out of it".
I am now 6 years post treatment for my 1st dx (surgery/radiation) and almost 3 years post treatment (surg 10/07 - tx ended 2/08) from my 2nd surgery/rad/chemo
I continue to live - some days better than others. I remain grateful for each day but often feel selfish that I still have serious - almost daily - anxiety and concerns. I think part of that is due to the fact that it was around 3 years when it came back before. Deja vu all over again??
I hate to post and mention this as new posters will feel depressed that "it just never ends", but I think that is just me.
I'm still here. Feel free to send me a kick in the butt if you think I need it!!!
Hugs
Donna
one kick coming your way donna xxxxx
Don't know, sometimes I feel like Donna does, don't like to post about my second and third reoccurances, etc....but that is just for me, not necessarily for others, I hope. I often wonder what happened to Mark? He always had interesting posts and very informative.
Mark was indeed a valued poster. Self employed a couple years ago, his business had a tough time. It required ALL of his attention. We talked on the phone a few times, but when your source of income gets turned around, you have to pay attention to the wolf at the door. Ditto Gary who had several small attempts at starting a new FDA regulatory affairs consulting business, that were hard to get off the ground. He and I also talked a few times, last I heard he was in welding school, picking up a new trade. Gary also commented about answering the regular questions a hundred times, and was suffering from burn out of doing that.
Those that have come here with high posting numbers are truly passionate, and genuinely altruistic. But life does have a way of (once you are well) pulling at you to get on with it. Some stay in touch with an annual December donation and note, some we are going to pull on to come to our many new events next year to dust them off and have them tell their tales of daring-do, to showcase the fight when this is found late, and to also show that despite the scary statistics, you can make it through this journey.
This is why we don't have chat rooms, that lose the conversation when finished. Even gone, much or Marks and Gary's wisdom and insights live on to anyone that is interested in using the search function for things they want to know.
Like many others, I too have been away for a bit. It's been too hard to log on with all the craziness. John's recurrence and met to his lungs really threw us for a loop, especially after only 2 weeks prior, our MO said, "your BOT is clear, go celebrate!".
So here we are again, going through another chemo round. Just yesterday we found out the results of the CT scan and the chemo is working... 25% reduction in the size of the tumors! While this is not a cure, it's a reprieve, we know, and have to rationalize that every day. We are living life to the fullest and have had a fabulous Midwest Autumn.
As many have said before, "Life isn't about waiting for the storm to pass...it's about dancing in the rain." Thank you to all who impart their wisdom and help here. xo
Bonnie
I have my account set up so that I am notified by email when certain people have posted. That way I can know what is going on and respond. Otherwise, I find I must take a break now and then. There are days when I want to retreat to the background and let others who have more experience take on the subject at hand. Also, and this is a big one, as we approach the next PET/CT, I always get a little broody.
Clark has his next PET/CT Wednesday before Thanksgiving. It will be a marathon day beginning at 6am. I feel like I am preparing myself for a boxing match. Things have been good for us in the last months but there is that sword hanging over our heads.
While we have made it this far, 3 years, I am reluctant to celebrate. We are happily living day to day and have discovered pure joy in the mundane. As Clark says he doesn't want to jinx anything. The anxiety is on the rise, but we will do fine. We'll put it on hold while we celebrate Thanksgiving with family.
I plan on posting for a long time. I know how good it feels when someone else knows what you are going through. It is not necessary to face OC alone. Empathy goes a long way. I hope to give what I can to someone else.
It was wonderful hearing from so many past posters and active members, hearing from those who are 6, 8, etc. years out from treatment endings. I am happy for those whose attitudes and positive outlooks keep them from stressing (too often) about the future, and are living life day by day, with its inevitable ups AND downs. Like Alpaca, Dick never had radiation or chemo for any of his cancers, so we can never offer our experiences to those who are facing that treatment, but I guess our submissions may help those with stage 1 SCCs whose doctors have leaned toward no further treatments following surgery and clean pathology reports. Dick's doctor is like a bee on honey with him because of his history and suggests biopsies often...in fact, he is scheduled for another next week on a tiny section of gingiva, simply because he is super cautious. The doctor often remarks that Dick's problems (whether SCC, dyplasia, lichenoids, etc.) are always on his right side. Anyway, in this season of thankfulness, we are grateful for each and every one of you, for sharing these most personal journeys so that others may find your experiences helpful and edifying, we grieve with friends who have lost loved ones, and to posters who are there for those who are currently facing this life-changing news to offer support and advice. THANKSgiving Blessings to all.
I would think that folks would be happy to hear from someone wondering how they're doing, especially if they can provide some insight or assistance to the person checking on them. I'm one of the "fallen away". Life does get in the way (in a good way). I have much less "down time" now, and more days when I want to put some distance between myself and cancer. I left the site long enough to become "out", and not be familiar with many of the current threads. I nearly never post now when I do come in and peruse posts, as I think "it's been covered", and I have nothing useful to add. I'm eight months out of treatment (well, tehchnically I'm out - looks like I'll have to have a neck dissection next month), and have been recovering very well, except for that one lymph node, so , thank goodness, have little experience with post treatment issues to share. I have to admit, I wouldn't have come onto the site today, but I recommended it to someone else, and said "Hey, it's been a while - I should pop in". Now I'm chiding myself, saying, you should chime in - new folks should know that many folks are like me, and go through much less than the average person. I dunno. Part of me used that as an excuse to not post - I thought it was a little cruel to hear how some suffer, and throw in "Oh really, you're on a very strong pain patch? well, I only take hydrocodone if I want to eat barbecue sauce". Well, at any rate, whether I'm posting or not, know that I am hoping we all do well. Happy Thanksgiving, all.
Anita,
I'll be thinking of you and Clark tomorrow for his scan. Hoping you'll have a Happy Thanksgiving.
Lost,
Will be thinking of you and Dick next week. Hoping he gets a negative biopsy report.
Thinking of you Anita and your husband!! Wishing you all all the best . . . .
Susan
Well I am alive and somewhat well (no recurrances anyway). But I realize now, that I suffer from depression and PTSD and oftentimes have a difficult time focusing, even invoicing for work I have already done. Life also got busy -probably to escape the depression. I watched the show on HBO "Wartorn" and had so many of the symptoms of PTSD that the light bulb finally lit up. I can't remember when I slept 8 hours straight.
I went back to college and found it much more challenging than I thought. My wifes mother died and I lived at a hospital for a month sleeping on chairs in the waiting room (complications from a surgery gone awry). I have a difficult time staying on task, miss deadlines and that is not good for business. I still have neck spasms and sometimes they are worse. My blood pressure is high (which it never was before) and I have many dizzy spells. I was in foreclosure for almost a year and somehow obtained a HAMP loan modification which leaves me a whopping $120/mo left after my senior advantage deduction from SSDI. I have made attempts to re-engage in the forum but it is very difficult reliving cancer all over again and again. But you can't really escape it - it's always there waiting in the wings like the grim reaper. The financial devastation is something that I am sure anyone with some days can understand. Business contacts are compromised, the economy is in the toilet and the people Obama put in to run the FDA are a bunch of idiots. I have to hustle every month to survive and have been on austerity for as long as I can remember.
I spent last year selling my stuff on Craigslist, which is probably a good thing because I had way too much stuff. Selling stuff on line is actually a full time job. You have to have about 20 items posted, write the add copy, take great photographs, and then you have to close the deal when the buyer shows up. I knew what "bundling" was long before American Pickers came on the air.
Oftentimes I feel like I have let everybody down - wife, bandmates, business partners, friends, Brian, OCF, etc. My wife suffers many of the same maladies that I do and we both "present" well so people don't see the brokeness.
I am grateful for the almost 8 years of being cancer free (yesterday was the 8th anniversary of my original diagnosis), not to leave this thread in a funk. I wish you all good health...
I am still here, and check in every once in awhile. Work is crazy and I now suffer from depression as well as PTSD like Gary. Working through that with my psychologist and zoloft. I sure can tell when i forget to take it. With boy scouts, work, and everything else, I have very little time on here. I will not be posting much for awhile, but will be lurking. It hurts to type, write, lift things. I am going to see a specialist Dec 2nd to find out what is going on. My PCP thinks the port caused some nerve damage. Who knows?
Gary - you most certainly have not let everybody down. I remember so well that you were there when my son was in Tx with your compassionate help for us and for so many others. I was away for a while, too and came back recently, but when I see how well others are taking care of all the "newbies" that come along, I think maybe there should be an "alumni" for those of us who have "been there, done that". I went back to college and it certainly was challenging for me, too, but it kept me busy so I could get over the Big D (divorce). I'm not a cancer survivor, but there are many times when I have to struggle to keep from thinking about all the "what ifs" of my son's cancer, his depression and resulting financial problems. He sold practically all his stuff on eBay. I, too cannot remember when I've slept 8 hours straight and I've given up trying to do that. That's why I sometimes post on OCF in the wee hours of the morning. Rather than toss and turn, I figure I might as well see if anyone else is up or if I can offer a word of encouragement even if just to say, "yeah, I can't sleep either." But whenever a bright spot comes along, I really try to hang on to it and savor it for as long as possible before the next "funk" comes along (like the bright spot when my 10 yr old grand-daughter sang for me, a musical recitation of all 50 states!) Gary, I am glad that you are alive, and for your almost 8 years of being cancer free! It's good to hear from you and know that you are still around. It's like old home week just hearing from all those great OCF friends that were around when my son and I were in the throes of just making it to the next day, the next hour. Gary, if you are experiencing PTSD or depression, I hope you find something that will help and that both you and your wife can get to feeling in a better place. My daughter tells me "Life is Good". I'm thinking, she could be right. It could happen.
Gary - Do not ever say that you let me, OCF, or any of your cyber family here down. Nothing could be further from the truth. With thousands of really meaningful posts on these forums, (not just the well wishes kind) you have imparted knowledgeable information to more people than you will ever know, considering the thousands of lurkers that visit the boards, who read past threads to glean information. You have likely forgotten more about radiation than I will ever know, and were always generous about sharing that wealth of knowledge with me and with the posters here.
I am sorry to hear the extent of the story behind the story you have shared with me on the phone. Lord knows you have dealt with a lot. But don't ever feel like you let anyone down, especially when you MUST put your own and your family's needs first, and do not ever forget that we have been friends since the beginning of OCF.... from before Las Vegas to today. That will never change. There isn't a poster here that wouldn't come to your aid if you asked.
But I know you, and you are much like our good friend Glenn, GRHS, who we both cared for, (perhaps even loved, as much as one man can love another) who was as tough as nails, never gave up even after giving up a kidney when it went there, part of his liver when it went there, part of his lungs when it when there, and despite it all - was never one to complain, or ask for help. I wish you better days brother and fellow traveller. Call when you can.
Amen, Brian!
Gary,
Thank you from all of us, for all that you do.
May the Holiday Season bring you brighter days.
Gary,
Sorry to hear about all the crap you have had to put up with but one thing should be perfectly clear and that is your contribution to the OCF. Don't even try to go there. I loved and always looked forward to reading your posts because I always learned something especially your knowledge of the radiation field.
Gary
Ditto on the above posts. Realistically taking a 90 day break after posting almost continuously since Dec 2002 doesn't qualify as letting OCF down. In academic circles, you would be a Poster Emeritus, i.e., someone who has earned full retirement for his efforts, but still has much to contribute just on a different less structured or regular schedule.
Hope this Holiday season goes better for you than this past year sounds.
Charm
Gary, Im happy to see your post showing your accomplishments and that you are doing alright. Im also sad at the loss of your mother in law. Im sad that you feel any remorse that you have not been on the boards, and sad because of all the other struggles you have endured. Thank you for being so selfless and dedicated to OCF. Your posts have helped so many people including myself.
Everyone needs time for themselves and sometimes life can catch up to the best of us. Please do not feel that you have let anyone down. We are all in your corner and right here anytime you want to stop by. Hope you enjoy the holidays. Wishing you all the best!!!
I was away for quite a while and came back recently when my son was scheduled for a CT scan and I felt a little bit like people who only talk to God when there is a problem. Well, I did that, ( talked to God) but I felt I could get quicker answers from the OCF friends and I did! I am sticking around now, even though my experience as a CG is not too recent anymore, so I can see how everyone is doing and in case I might be able to add something useful.
Depression is one of the most difficult problems that HNC patients have to face. The challenges of life in the shadow of cancer make it even more difficult. The inability or difficulty to speak in many people make it hard to express emotions and can lead to isolation.
The social stigma associated with admitting it makes it difficult to reach and treat many individuals that need therapy. Surgical cure is not enough and there should be more emphasize about mental well being afterward.
Depression is part of the normal mechanism of coping with adversity. There are several stages in the way that most people cope with a difficult new situation such as being diagnosed with cancer. The first stage is Denial and Isolation, than Anger, followed by Depression, and finally there is Acceptance.
Some people get �stuck� at a certain stage such as Depression, or Anger. It is important to move on and get to the final stage of acceptance and hope.
This is why professional help and understanding and help by family and friends are very important.
One can read more about depression in my Blog:
http://dribrook.blogspot.com/p/overcoming-depression-after.htmlItzhak Brook MD
well I have been lurking around too. It has been about 134 months post tx. I am poing pretty good, back to working out but eating is still a chore. I had to stop work and have not gotten a new job since my treatment. Bad ecconomy out there. But I do count my lucky stars EVERY day, good to be on this side of the green.
all the best to everyone here
Steve
Gary - you are similar to the "Founding Fathers" only in our little war-torn country of OCF - respected, cherished, and loved for all you have given and will continue to contribute - we appreciate every minute and every word of wisdom and experience.
Thank you.
Gary,
You helped me so much when I would come here doing research for my mom. You are one of the people that kept me sane going though the battle with her. I believe my mom suffers from depression as well. She never used to be negative about anything and she is negative more often than not these days. I know that her appearance bothers her although she tries not to let it bother her but I know that it does. After they routed all the veins from one side of her face to the other one side of her cheek is really sunken in. Some plastic surgeons want to inject some experimental botox type stuff in her cheek but the procedure is very pricey and she just can't see spending that kind of money on it. I do know that her quality of life is not what it used to be so I try to help be more upbeat and positive but I know that it is hard for her sometimes. Anyways just wanted to say that Gary I think you are amazing! Thanks again for everything you did helping me through my moms battle.
Dani
Hey Everyone,
Happy New Year. I haven't been on this forum in a couple of months but saw this post and decided to say Hello. It's been a year since my last radiation treatment and life is good. Getting back to eating normally and being able to taste the food. I gain most of my weight back which is great. All my scans are clean and I make sure I see my doctors. Its great to see this forum helping so many others. I'll be sure to log on more to be able to pray for others.
thanks
Oprah Moore
Just wanted to check in and say hello. Will hit the 10 year mark all clear in October of this year. I am learning that there are so many other things that can "get us" that I'm just rolling with living and working and trying to give back what I can after my diagnosis. There are many of us who have chosen to not look back and just go forward. None of us know what tomorrow brings. Hoping that everyone is well and dealing as best as we all can through life in general - don't be afraid and I need to remember to send the Foundation a check - will do that asap. God Bless
I have no excuse except ignorance on my part. I was coming in reading posts tho. I missed not being here make typos.
And we missed you Jim! My travel schedule as of late (I'm in Houston now) and computer issues have limited my responses on the boards. Where I will monitor the forums throughout the day I'm scanning for issues rather than taking time to get to know new members and plugging in. Feel a bit guilty actually
I've missed you to Jim. Hoped you were hanging in there.
I too am still here and check in often,,I recieved so much Love and support here to get me through the scariest time in My life,,,,I still am smoking and don't deserve to be here but never will forget Those of You that got Me through it and I am in awe of all that can quit and remain smoke free. I hope that You all are Survivers and Live long healthy lives and want You all to know just how valuble You are to those who wouldn't have had the courage to find out what They had,,like Me,,,,God Bless and keep you safe, Colleen
Hi Colleen - Glad you checked in and it's good to hear how you were helped by coming here. You remind me of a very dear friend of mine, who made quite a difference in my and my son's life, helping us through tough times when he was surviving cancer. She was a nurse and very aware of the dangers of smoking, tried several times to quit. I've never smoked so I don't know how incredibly difficult it is to quit. But I heard the anguish in my friend's voice, a few days before she passed away, as she described how addictive it is and that it had such a hold on her. I also have another son who still smokes and when I ask how he's doing, he tells me, "I'm trying, Mom". I know from reading others' experiences that it can take many times of quitting to finally be successful. I do hope that someday you may be able to quit smoking. We want you to be safe, too. Thank you for your words of praise and blessing for those who helped you.
Just noticed this post. I do lurk occasionnally, but find that my chemo/radiation/PEG experience is something most people on this site have gone through and are more than willing to answer questions about. With the exception of having Hermittes Sign for about six or eight months, most of my posts are dittos of other posters. But, I have participated in both walks Elizabeth Sikon ran in San Antonio and raised a nice chunk of money for the cuase and feel pretty good about it. Elizabeth's brother also made a nice PSA type video of me that turned out excellent -
http://www.youtube.com/watch?v=9B8QZNx4TlY. So Michael Douglas has nothing on me!!
Ran most of this year's walk until the misty rain made it a little to slippery to run on the steep pavement. I didn't want to search for a forum on broken hips. I met Charm, Christine and Eric at the two walks. All are quite strong survivors who went through a lot more than I did.
I'm about three and a half years out now and doing quite well. Today i came back to see if anyone had posted the link to this obituary -
http://www.legacy.com/obituaries/saltlaketribune/obituary.aspx?n=val-patterson&pid=158526785 The guy was a victim of OC and wrote his own obituary, which I did think of while i was getting treated. It's a great read and while reading it I wondered if he was ever a member of this site. Might be worth a separate post, but here is a good start.
Ray, I read about him on the Yahoo news. I dont think he was an OCF member but you never know. Some members prefer to be more private and dont like to be identified so we never know who they are.
It was great to get to talk with you at the first San Antonio walk! So glad you came out for it. You are a very lucky guy to be doing so well. Wishing you many more years of good health!!!!
Hi All... I still visit the boards quite a bit and should contribute more.. Everyone here was so supportive when I was diagnosed and was in treatment. I just had a follow up with my ENT last week and there is NED. It has now been 2 years and 4 months.
Tommy