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Tom where are you????

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Anybody heard from Tom? The older members know who I am refering too. He was on here pretty regular and all of a sudden he pulls a houdini. We don't know what happened or if he is ok or not.He has not posted in months. Last we heard he was heading for Texas for some treatments. This is what makes it bad not knowing anything other than the members first names. We have no way to contact anybody. We come to look at this site as a family,but when a member drops out of sight we are stuck with our THUMB up our nose. I know people are not committed to posting,but they should at least drop a note once in a while to let us know what is going on.Some may disagree with what I am saying but this is just my opinion. John

forme's picture
forme
Posts: 1157
Joined: Aug 2010

Hi John

I to wonder about missing members. I think the last we heard from Tom was after his abdomen biopsy in April. I always believe that the missing are well and living life to the fullest.

What about Fran and Donna? Anyone heard from them.
Kaye? Lots of folks we just have to think the best for.

Lisha

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allmost60
Posts: 3149
Joined: Jul 2010

Hi Guys,
I've instructed my granddaughter Chelsie what to do if something happens to me. She knows how to access the group and will let all of you know whats going on if I'm not able to. Steve isn't computer savy other than to play his on-line poker, so I made Chelsie my "back up" buddy to get information to the group. I think we should all have a back up plan in place. I consider all of you my friends and my second family, and would feel bad if I caused anyone to worry...(not that I think I'm all that important in the big scheme of things)..ha! I'm like you Lisha... I also like to think that those that don't post on a regular basis are doing good and just getting on with their life. I often wonder about Chris from New Jersey...last we heard she was dealing with some issues that made her think her cancer was back...many more I wonder about also, but will just keep thinking positive thoughts and saying a prayer for all. Have a good weekend everyone...Love...Sue (FNHL-2-3A-6/10) age 61

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Sue,
Thats a great plan to have someone back us up. I have instructed the guys down at the "Dead Eye Bloody Bucket Bar & Grill" to get on the horn if something happens to me. No, just kidding...I know my wife will post something if that happens. As far as you saying you don't feel you are that important well,think again. You are in my eyes the backbone to the group and when you don't post it shows in the responses. I know others have noticed it too. You have showed a great amount of support for each and every one of us. John

allmost60's picture
allmost60
Posts: 3149
Joined: Jul 2010

Well..thank you John, but I hardly feel like the backbone of anything. I just remember how darn scared I was when I finally found this group and how much better I felt after you and others reached out to me. I can remember it as if it was yesterday! I don't have to go to work everyday so that makes it alot easier to get on the computer than those that do work. Lizzy is work, but she's "happy work" and leaves me feeling good at the end of the day...a bit tired forsure, but it's a happy tired. Anyways...maybe everyone will check in over the holidays and let us know how they are doing. I have my next R-infusion on the 20th and then our 32nd anniversary is on the 22nd. Man...how time flys! Love..Sue
(FNHL-2-3A-6/10)

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jimwins
Posts: 1971
Joined: Aug 2011

I agree, it's a good plan.
And Sue, you're the "Salmon Queen" on the recipe project so
of course you're important! ;) (Just teasing...)

There's a part of me that says I should "get on with my life" but
I probably won't feel more comfortable until a few scans down the road.
Coming here does kind of help keep me sane though it's very difficult
at times when I read about the hard times people are going through.
It can get me down and when that happens I do try to take a break and
put it all in context. Honestly I don't want to be thinking about
cancer all the time or at least not in a self-negative way.

I miss bluerose and I hope her departure was primarily that she needed
a respite. I know she's also involved with at least one Canadian board.
I'm with you guys, assume the best for these folks. We can all certainly
understand taking a break or moving on I think.

Congratulations on your upcoming anniversary!

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. ☺
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COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Jim,
I read the post everyday,but must have missed the one about Blueroses departure. Whats up with that? John(FNHL-4A-1-5/10)

jimwins's picture
jimwins
Posts: 1971
Joined: Aug 2011

She posted a "goodbye" on the Emotional Support board:

http://csn.cancer.org/node/230517

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allmost60
Posts: 3149
Joined: Jul 2010

Hi John,
Here is the post that Bluerose posted in case you couldn't find it. Sue

Goodbye to you all from Bluerose
November 15, 2011 - 3:30pm

I have decided to leave the site and just wanted to say a fond goodbye to all of you here who I have had the pleasure of chatting with and writing to over the few years I have been here. I want to sincerely say a big thank you to all of you who have helped me with many of my issues relating to my journey with cancer and I hope that I have helped at least one of you with something I have shared that hopefully made your journey easier as well.

I wish all of you nothing but the very best and hope that the cure for this hideous disease is right around the corner and that all of you struggling with it today will soon be free of it at last for good. Maybe that sounds like a pie-in-the-sky dream but I will dream it anyways.

Hugs to you all and blessings to every one of you too. I will stick around for a couple of days in case any of you have any leftover posts that I haven't had a chance to answer.

Bluerose

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COBRA666
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Joined: May 2010

Sue,
See what I mean about you being there to help everyone. Thanks for the post. I am sure others will appreciate it too. I guess some of us do not go outside the Lymphoma section. I do every so often,but not too much. John

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onlytoday
Posts: 583
Joined: Jun 2010

Hi All,

I've been around a bit but haven't really given an update on my status. I am doing the old "watchful waiting" thing. No remission yet, pet scan in January.

Having several other issues: intestinal problems (having biopsies done in January), post shingles neuralgia, degenerative disc disease with pinched nerves... I'm a bit of a mess! On disability much to my surprise.I'm used to working alot- too much actually. Going to physical therapy 3 times a week and trying to remain as stress free as possible. |Anybody else having issues like this after chemo? I had Rituximab and had a severe allergic reaction to it at the end. Wonder if its all related. I was SO healthy before I got the NHL!!

I feel like I get a new painful condition every so often whether I need it or not ever since I got lymphoma!

Thanks for checking on me. Prayers and love to all.

Donna

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Donna,
I think there is so much connected to the NHL. Actually not so much the NHL,but to the chemicals they pump into our bodies. I really wonder what is worse. The disease or the treatment. The only real side effect I have noticed is the dry eye syndrone. It makes me feel tired all the time. If I close my eyes then I do not feel tired anymore. It doesn't work too well when I am driving,but I am working on it. HAHA !!!! I guess its just something we all have to live with. Hopefully the side effects will wear off in time for all of us. John(FNHL-4A-1-5/10)

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onlytoday
Posts: 583
Joined: Jun 2010

John,

Thanks for your response.

I had some issues with dry eye before treatment but since treatment it became much worse! I use Restasis with some success, but I still usually feel like I have sand paper in my eyelids.

I don't know what else to do and I don't want plugs put in, which is what the eye doctor had said he would try next. I think I'll pass on that for now.

So you're not alone with this syndrome!

Donna

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Donna,
The eye Dr. suggested the plugs for me also. They now have a temporary plug the Dr.can put in to see if the permanent ones will work. They last about 3 weeks before they disolve. You never have to go back if it doesn't seem to help because the temps disintegrate all by themselves.John

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allmost60
Posts: 3149
Joined: Jul 2010

Hi Donna,
So glad to hear from you! The only issues I'm experiencing is the darn fatigue. Still only feel about 50% back to normal in that area. Also..shortness of breath and racing heart. By the time I walk outside down the stairs(18 of them to street level)and then another 20 feet to our mailbox, my heart will start pounding where I can feel and hear it in my ears. By the time I get back up to the house I have to sit down and relax until the pounding in my ears and chest subsides. I've told my Onc about it and he doesn't feel it's anything to be concerned about. He did suggest in the spring that I get a heart stress test, but in the meantime told me to just not over exert myself. Walking to the mail box in my opinion is hardly exerting myself..it's not like running around the block or anything truely strenuous. Maybe once I finish the Rituxan maint in Feb 2013, this stuff will go away. In the meantime I doubt I'll be running any races..ha! I have alot of indigestion and heart burn also, but had that before ever doing chemo. I was also VERY healthy and energetic before my FNHL diagnosis...makes me sad when I think back to the way I USE to be. You be sure to get back with us on your scan and biopsy results in January. I'll be keeping you in my prayers. Love...Sue (FNHL-2-3A-6/10) age 61

onlytoday's picture
onlytoday
Posts: 583
Joined: Jun 2010

Sue,
You're so great, thanks for the response. I agree with John you're the best when it comes to staying in touch with everyone and supporting all of us!

I hope your symptoms get better-it does sound like it needs to be checked. It must be frustrating to be pooped after walking to the mailbox!

Have to make sure you have strength to play with that precious grand-baby!

Thanks again - it means a lot. This sight and people like you ,John, and Vinny and Lisha and everyone really really mean so much to me. The support helps so much, when others try to understand it's nice (friends,etc), but you guys are walking in the same shoes and it makes all the difference.
Love and prayers,
Donna

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vinny59
Posts: 1030
Joined: Nov 2006

Very true words about people walking in the same shoes.... We do find strenght in the fact that people are feeling the same thoughts and are having the same problems that we all go through. Just a comment about staying in touch, that's a tough one, when I had head and neck cancer I was on that group's page. After I was in remission, I stayed on, for about six months to help newbies with questions. As time passed I felt that I was not going through what the current members are, thus I faded away, I didn't want to think about cancer anymore... Then I got sick again and found comfort in knowing that I can talk to people that are going through the same thing that I have.... I think as time passe's you will see what I mean..... Vinny

jimwins's picture
jimwins
Posts: 1971
Joined: Aug 2011

I think for most people, once the worst of the ordeal is over,
it's normal to try to move on with your "new normal" life and not
think about cancer. I'm barely out of chemo and will have my
first 3 month checkup/scan in February.

I find it comforting to come here and try to help and I do gain
support in knowing others are going through similar things.
I'm also adjusting (with some difficulty) to the new life.
I've worked since I was 14 years old - it's weird not working now but
I know I'm not ready yet physically or mentally.

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission.
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COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

People used to say I wasn't mentally able to work before I even had chemo. LOL. I just had to throw some humor in there.:)....John

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jimwins
Posts: 1971
Joined: Aug 2011

And why does that not surprise me John? ☺☺♥
"Humorang" commin' back at you ;).

LOL and smiles,

Jim

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allmost60
Posts: 3149
Joined: Jul 2010

I learned early on after my cancer diagnosis that one better develope somewhat of a sense of humor or if they didn't, then plan on being very miserable. It took me a few months to go from total doom and gloom to feeling "Ok" with joking about my cancer. My 7 sisters were the hardest to convince that "lightening up" would work better than constantly worrying or fretting about me. They would call me and give all kinds of advice on what I should eat, drink etc. I LOVE chocolate and eat far too much of it, so my oldest sister is always saying.."quit eating so much of it"...I now come back with.."why?..whats it going to do..give me cancer"?..ha! She says.."thats not funny Susie"..you shouldn't joke about it". I think she's starting to relax, but doubt she's ever going to be comfortable with my "cancer humor". If we spend all of our time being down or worrying, then cancer wins, and I'm just not going to let it get the better of me. The one thing we CAN control with this stupid cancer is how we deal with it.
Love ya...Sue (FNHL-2-3A-6/10)

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

You guys got that right!!! All Lymphoma does is make us more aware of how vulnerable we really are. Life is promised to no one and it can be taken at any time and any place. I have made mention of this before. Its just that a cancer diagnosis hits hard. Its no longer a death sentence. Some car accidents,heart attacks and other unexpected accidents can be a death sentence,but nobody ever gives that a second thought. There is no warning of the latter. We have had a warning and are learning to live with it. It helps appreciate life more. Don't get me wrong I am not saying we are blessed with this disease because that is the fartherest thought from my mind. Too bad we all couldn't have had a great sense of humor from our childhood on. Its takes something like this to help bring it out. John

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

You guys got that right!!! All Lymphoma does is make us more aware of how vulnerable we really are. Life is promised to no one and it can be taken at any time and any place. I have made mention of this before. Its just that a cancer diagnosis hits hard. Its no longer a death sentence. Some car accidents,heart attacks and other unexpected accidents can be a death sentence,but nobody ever gives that a second thought. There is no warning of the latter. We have had a warning and are learning to live with it. It helps appreciate life more. Don't get me wrong I am not saying we are blessed with this disease because that is the fartherest thought from my mind. Too bad we all couldn't have had a great sense of humor from our childhood on. Its takes something like this to help bring it out. John

jimwins's picture
jimwins
Posts: 1971
Joined: Aug 2011

Definitely agree.
LOL and Merry Christmas, Sue.

Chocolate

Hugs,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission.
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