1 yr. since surgery Dec 5, 2004 (total larynectomee). Still struggling. My boyfriend is going through the go thru since 2001. I'm new with this chat thing. My eyeballs are burnt from reading so much. Anyone relate? biopsy, radiation, surgery, post-surgery, nerves, life, pain, questions, uncertainty, hope.... it's no wonder we have any sanity left.

I certainly relate and this is a good place to vent. I also had to giggle at the name you chose for your member name. I had a tabby cat named Yipes (well his FULL name was YipesStripes) and he had a lot of character.....

I do not worry about things that I cannot control. I turn these things over to a higher power.
Darrell

Darrell,

You came back strong, but I see you are drifting back to your useless and non responsive postings again. Waht a shame.

Glenn

Welcome Yipes
One year out ...wonderful, your feelings are quite normal. This is a really great place to vent those feelings, nice, understanding folks.
You obviously have a sense of humour, that will help you through this yucky time in your life.
Glad to meet you.
Marica

hi Yipes,

welcome to the list.

i'm in salisbury, md and we have a great larynectomee group out hear... quite surprising for a small town.

the group leader is a Tina and the senior member is a dear lady (probably in her 80's).

When/if you are in the area (like going to OC), give us a holler.

cu,
larryb

Hi Yikes,
I'm another total laryngectomee, surgery August 2001. I'm a 'been there, done that' for most of the issues you raised. If you have any questions, post them here or if you prefer a quicker answer, send me an email rather than a private message. I

Hope you are doing well.

Take care,
Eileen

Yikes, by the way, I have it on good authority that Glenn[GRE 1} is really a pussy cat at heart. This forum will be a good place for you land when you feel the need. Amy

By the way.... off topic...Darrell, if you re-read the rules, we keep religious references out of our posts unless the first poster of a thread requested prayers, indicated a religious bent in their post etc. You are really close to crossing a line on this one and some of your recent others. Please walk the fine line here; it is something that has caused problems in the past with other posters. As to Glenn, he is tough enough to endure cancer issues that would leave most of us with chattering knees and shot nerves, more than that, his police background has put him in situations where I wouldn't want to be on the wrong side of him... but pussycat? Never. I will give him this. He has never hesitated to say what he thinks and call a spade a spade. Glenn is without question an acquired taste...

Hello Yipes,

Welcome to the Oral Cancer Foundation. You won't find a more informative site on oral cancer than right here. Post any question you can think of and someone with similier treatment will respond.
Glenn is one of the tougest members I have met on this site. No BS with him. He is a fighter all the way.

Hope to hear from you again Yipes, Danny Boy

I have to say that I do agree with Glenn (the only "pussycat" I know that carries a Glock) but I need to point out that what Brian posted was slightly incorrect in that Darrell's exact wording was taken from AA which is, in fact, a non-religious but spiritual program. "Higher power" could be a doorknob. I haven't heard yet of the "1st church of doorknob" (heh heh)

Danny Boy- great to see you back on the forum - I hope that you are feeling well these days (and you too Glenn)! (for those of you who are new here - these 2 guys are the MOST courageous on the board. (If I was in combat - these are the guys I would want on my 6)

Oh, and welcome Yipes. We are a family here and have occasional spats on the best ways to help people. At least its never boring. Diversity is a beautiful thing.

Boy do I have to agree with you on the sanity thing! Insanity has been defined as "doing the same thing over and over and expecting a different outcome" - maybe Darrell has a good point on the worrying part of it. I have found that the further I get from Tx the less I think about cancer thing all the time - but the docs keep stirring up the pot with every needle stick, scope, scan and exam. I least I have almost 4 months now between anxiety attacks

We're here for you.

I don't know if iI should thank you guys for the support, or what.

Gary, it was more the choice of advice so early on in the thread. Darrel seems to be, and his past posts have indicated that his higher power is God. We have been through this before and, although I occasionally attend mass, I am not deeply religious. My point is that, unless the original posts asks for spiritual guidance and support, the reply should be contain valuable medical advice and experiences. That is the appropriate higher power at this juncture. Just my acerbic writing style. Plus, I got the entire "Old Guard" to post in one topic! I should get props for that. I guess you are all Cat people.

As a final thought on the worry, I had a new MRI brain study on Monday and got........not great news yesterday. I have developed an additional Brain metasteses. It is not at the site of the two I had surgically removed in June and it is very small. It will be gone next week by Gamma Knife. My point is that unwarranted worry is not healthy, but once you have issues they can never be ovelooked. After an initial honeymoon of 16 months I have had H and N cancer EVERWHERE it is know to travel and it can be successfully fought. At 3.5 years I look, less 18 pounds lighter, the same and have no eating issues. Danny, please don't kill me for this, was told he would be gone long ago. He is not and he is doing well. Get your scans as directed, the PET will be the one to save you, listen to your doctors and carry on with the new normal. Worry? Yes, when you have reason to. You will never enjoy your second chance if all you do is worry about when it ends. I'm different, Danny is different, and I'm sure many others that I don't speak with are having issues. We know where we are going, just not when, that is OUR diffence Try to keep it all in perspective. It is the only way to make it with your sanity.

I do not normally post my health issues and I would like that aspect of my post to slip away, on the forum anyway. PM's are OK for question on various metastases and related treatments.

Speaking of getting the old guard together, there are a number of long term posters I haven't seen in awhile. If you are one of those, who have been AWOL from the board for awhile, how about just a one liner to say that life is good and you are taking some time away from the constant, perhaps negative reminder the board may pose to your emotional well being. I think of a lot of you as family... I'd like to know things are well and good.

Bye the way, Gary may be right in his perspetive about this particular post, but like Glenn has said, some have made their belief systems evident in past posts. I just don't want to see another religious free for al on here.

But in the interest of providing a alternative religious perspective, I'm thinking of starting a church if there are any undecided souls out there. I'm thinking of calling it something like "Our Lady of Perpetual Whinners." Clearly the really tough like Glenn and Danny won't be found in attendance but any others, who like me feel the need for an alternative that adresses our demeanor.... feel free to join.

And for those of you that think Greg is a 'pussy cat', as a life time owner of the beasts, remember that they come with claws and teeth if you betray their trust. Otherwise, they are the most loving of animals.

I'd like to get this thread back to the original topic of life as a total laryngectomee. There are not too many of us on the board and I think it is an important topic. I have recently been in private correspondence with a member of this board who most likely had her surgery yesterday. She has told none of her friends she has cancer and is attempting to do this on her own. She is scared. I know the feeling.

I am here to help anyone I can. Please ask any questions you have about life after this surgery, and I will attmept to answer. While I have said you can email me, unless you really need an answer immediately, I think addressing the topic on the forum may benefit future members better and current lurkers.

Take care,
Eileen

hi yike. you can join my choir haha if we dont laugh we will cry .i am also a laryngectomee .yes ive gone through everthing you mention ,its been 8 months since op;and i still stuggle but i believe there is light at the end of the tunnel its a long road this one, this op made my bilateral mastectomy like a walk in the park ...no disrespect to anyone this is certainly a tough one i sometimes think i will wake up from a nihtmare.we must remain strong and positive to fight this the beast of beasts GRRRRRR TAKE CARE YIKES best wishes as you travel the road ...maz

I like that! "Our Lady of Perpetual Whiners", I am a former Catholic and it goes hand in hand with my old alma mater "Our Lady of Perpetual Guilt". I used to be very judgemental about this until I discovered that America in general is a "guilt" based culture in contrast to "shame" based Asian cultures.

I agree with you Glenn, it was way too early in the thread for that particular post- I was merely addressing a very small technical detail. And I certainly agree that religion or proselytizing has no place here (unless of course, the original poster starts it).

I've been a Christian for many years, play in the worship band at a 3,000+ member church and I am a Lay Christian Counselor as well and I try to leave religion at the door when I come here out of respect for the diversity of people who visit the forum.

Glenn you have convinced me that I am going to DEMAND annual PET/CT at my 3 1/2 checkup in May.

Yipes - I am truly sorry that this has gone so far off topic and I hope, if anything, that this banter has, at least, brought you a smile or two. We are all less than perfect human beings and not "computer generated" help.

For the "Old Guard" I started that "survivor check in" thread a while back as a central repository for positive outcomes to balance out the "doom and gloom" aspects. Please avail yourselves to put a note in there as well.