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I'm new here

Posts: 3
Joined: Aug 2002

Hi everyone,
I'm new to this site and would like to talk to anyone dealing with what I'm going through. I just want to know how a person is supposed to live their life and plan for the future when the future is so unclear. When I could get sick again at any moment. How do you deal with that? How do you get by everyday without just going through the motions? SometimesI don't think I can.

sdeselle's picture
Posts: 21
Joined: Apr 2002

Hi Stacey,
If you could tell us what type of NHL you have, and where you are in your treatment, then I think others might be able to give you some more insight and perhaps answer your questions.
Obviously everyone deals with their illness differently and we all have our own story to tell.
I'd be happy to talk with you.

dx. Burkitt's Lymphoma 9/01

Posts: 3
Joined: Aug 2002

Hi Scott,
Thanks for the email. I was diagnosed with low grade NHL in March 1998, had 6 months of chemo and have been in remission since. While that sounds great, they tell me that the type of lymphoma I have isn't curable and they expect it to come back. So basically I wake up every day thinking "is this the day", every pain, I freak out, every time I don't feel good I think this is it. Funny enough I can't even trust my body to tell me something is wrong because I felt fine when I had cancer and then I found out I had a 15" x 9" tumor in my abdomen. I tried to return to my "normal" life after treatment and didn't really understand why I couldn't... then 9/11 hit and I just basically exploded and have been a mess ever since. It's kind of a long story and don't want to bore you. I'm healthy and I should be happy but I feel like a ticking time bomb and I don't know what to do. You are very sweet to respond to my email. Thank you. How are you doing?

wallpa's picture
Posts: 24
Joined: Apr 2002

Hi Stacey,

I keep pushing this non-Hodgkin's lymphoma email list that I'm a member of. There are 600+ people there with non-Hodgkin's, the people who have been there the longest all seem to have indolent lymphoma.

I think you have to register on Yahoo! and then send an e-mail to "nhl-subscribe@yahoogroups.com" to start getting the emails.

Don't look at what you have as a deadly disease or a "time bomb." Sure, it will come back, maybe again and again, but it can be treated again and again. You have to look at it as a chronic disease that needs to be treated, like diabetes. (Except that diabetics have to treat their disease every single day, whereas you only have to deal with NHL whenever it happens to show up every few years.)

There are people on the list who were diagnosed in the 1980's who are still doing quite well. "Indolent" literally means "slow to develop." PLUS, there are so many new treatments for this lymphoma being developed, that by the time you lose your remission, there may be a new treatment for you. (Have you gotten Rituxan yet?)

I, too, had no idea I had stage IV non-Hodgkin's lymphoma. (You can read my story on my webpage at this site.)

At any rate, while I was going through chemo (CHOP+Rituxan x 8) I had a LOT of seriously horrendous days. From what I understand from the people on this NHL mailing list, I had a really bad reaction. I was sick constantly. I couldn't work at ALL. What I had to figure out was that if I was having a good day, I didn't want to ruin it by thinking about and anticipating days that HAD NOT EVEN HAPPENED YET. You know what that's like, having had chemo. Your next treatment is always looming over you. You've got to ignore it and live each day individually.

So don't ruin the good health you are experiencing now by focusing on getting sick one day. Heck, we are ALL gonna die one day--lymphoma or not. As a matter of fact, you will probably outlive a LOT of people who are feeling sorry for you right now because you have cancer and they don't.

I am doing quite well, I am finishing up some radiation and have already been declared in remission. I hope you are feeling better.


Posts: 3
Joined: Feb 2002

I'M NEW TO CSN also.I have NHL,have for about 4 1/2 yrs.mine is incure and slow growing,too.I question the same way you do!? But, I'm thankful I'm here to question.I live my life as fully as I can,my kids say mom you never know when your going to die...you could be run over crossing the street. Jo98

sdeselle's picture
Posts: 21
Joined: Apr 2002

Sorry I'm a little late getting back to you.
Reading the other responses, I totally agree with Patty (wallpa) and jo98 - you've got to just concentrate on one day at a time. Forget the past and don't worry about the future...
Like Patty, I'm a member of the NHL Cyberfamily and the Yahoo! NHL group. This really is the best site to go to if you want to talk to lots of folks. There are over 1000 messages posted each month!
My story can be found on my CSN webpage too.
I'm doing really well. I just had a CT scan on 8/30 (Day +206 after my SCT)and saw my Onc on 9/3 - no sign of my cancer, I'm in remission. I was able to go back to work part-time in July, so I've been concentrating on getting back to normal as much as I can.
I don't dwell on my NHL, but I'm very willing to talk about it, if asked.

Hang in there!!

dx. Stage IV Burkitt's Lymphoma 9/01

Posts: 12
Joined: Mar 2003

hi, im new to the site as well,i live in australia and ive been fighting lymphoma for 23yrs .It has been a real pain, Its really hard to live a so called normal life.I just suffered my last reoccurence last sept, but this time its in the marrow, which is freaking me out a fair bit.Ive decided to give chemo a miss this time around and go with an alternative treatment.This decision has been really hard to make,has any one else made a decision like this?

Posts: 1
Joined: Oct 2002

Stacey, Tonight is the first time I have looked at this website. I saw your message and had to sign up and respond to your note.
First, let me tell you I am a two time NHL survivor and right now I am waiting on test results from this round of testing. Since my recurrence I am tested every 90 days and I am very thankful everytime I hear the good news. There was one time, my 5 year anniversary of my original diagnosis, that I was given some bad news. I talked with my doctor and got the facts then we began treatment again. I say that to help you realize that I do understand what you are asking about. Just learn to take it one day at a time and when you need help ask people like you have here to help you understand. Survivors are people who never, never, never give up. The important thing is that you are able to get up and go through the motions. There is hope! Please write me anytime I can help.

Posts: 6
Joined: Mar 2005

Hi Stacey,
I was diagnosed a year ago with indolent NHL. It is very hard dealig with this. I have completed my chemo and now going thru the Rituxan preventive treatments. I hope and pray this works. If you like, you can email me to talk. I am willing to help anyway that I can. Swdeborah@aol.com

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