IMPORTANT PLEASE READ

Roberta1 · Posted: Tue Jan 17, 2006 5:29 am Post subject: IMPORTANT PLEASE READ

Hi everyone,
I've been visiting these boards over the past week and am a little disappointed! So many read the messages but so few ever write back, and some messages go campletely unanswered! We're all here for the same reasons right? Empathy, advice, support sometimes just to get something off our chest. Sometimes all someone needs is a "hang in there", "I'm sorry you're having a bad day", "congrats on the clear scan", "I understand, I've been there". Is that so hard to type?? Some of the posts have people really reaching out for something, anything. Only to see of the 1,000+ people that have seen there message only 9 felt there concerns important enough to reply!??? I think we all came here at first feeling the same way. Scared, nervous, out of place. It doesn't have to be!! Could we all just reach out a little more, even if you have nothing better to say than Hi, hope you feel better soon! We all hear it in our daily lives, it means so much more coming from someone who KNOWS how you feel because they've been there. This is such an awesome resource for us all and will only be as helpful as WE make it! SO PLEASE PLEASE PLEASE Let's all reach out a little more!
_________________
Love and Prayers
Berta

stella · New User Joined: 12 Mar 2006 Posts: 9 Location: brisbane

im only new to the site so i'm not sure if i should have an opinion on anything yet but its not in my nature to keep my trap shut Laughing

so i fully agree with you we are here unfortunately for the same reason for support . these are some of our darkest days ahead . it wouldnt kill people to reply Embarassed

anjou · Experienced user Joined: 01 Jul 2005 Posts: 65

an extremely active lymphoma support board can be found at

www.lymphoma.com Look for the message board
_________________
Follicular lymphoma grade 3, stage 2 dx 9/99 CHOP x 3 3600 rads rituxan x4

weston · Regular Joined: 23 Nov 2005 Posts: 20

Roberta,

Thank you for saying what im sure other people are thinking. However, i cant answer for them!!

Your honesty shows that your values are strong.

Take care and thank you again.

xo

philip1966 · Posted: Sat Mar 25, 2006 6:04 pm Post subject: Re: IMPORTANT PLEASE READ

Hi
I am new to this site and I will be posting in the future, at the moment I don't really know what to say!!!!! Rolling Eyes

hoosier · Regular Joined: 17 Oct 2005 Posts: 15

HI FOLKS
TO START WITH I AM A 5 YEAR SURVIVOR OF NHL STAGE IV. IF YOUR DEALING WITH INDOLENT B CELL CARCINOMA IT IS NORMAL FOR THE ONC TO WAIT AND SEE THE AMOUNT OF PROGRESS AND THE SPEED WITH WHICH IT EXPANDS. OF COURSE THIS SHOULD ONLY APPLY TO LESS THAT STAGE IV. THIS PARTICUALAR CANCER IS SLOW GROWTH, BUT UNFORTUNATLEY IT IS NOT CUREABLE, ONLY TREATABLE. TRY AND MAINTAIN A HEALTHY WEIGHT AND POSITIVE MENTAL ATTITUDE, IT WILL HELP. AS FOR YOUR IMMEDIATE FUTURE, WELL THAT WILL DEPEND UPON YOUR ONC. THERE IS A LOT OF NEW DRUGS AND TREATMENTS, HAVE FAITH AND FEEL FREE TO CONTACT ME IF YOU NEED MORE INFO. I HAVE BEAT IT SO FAR AND SO CAN YOU.
PAULAMSMITH@SBCGLOBAL.NET

ag2006 · New User Joined: 12 Apr 2006 Posts: 8

I'm new here but I second that. I belong to other related groups and I know not everybody has an answer to our concerns, but a simple I wish you the best means a lot more than you can imagine. If you are reading a message, take 5 seconds to do just that because it does mean everything to that person who is scared and has gotten the worse news of his/her life and takes the time to post and pour his/hers personal battles. That's what this board is here for.

On a side note, I often send updates to my coworkers (around 50 of them) and only a few respond. I stopped writing because it is more depressing to see how very little respond and I need a morale lift sometimes and that does not do it. I know most people don't know what to say to a person that is ill, but when you are ill, all you want is just a quick "I wish you the best or if you are spiritual" send prayers. Just a simple acknowledgment.

Thanks for bringing this up.

Anne

benhoole · New User Joined: 29 Apr 2006 Posts: 7

Dear Anne,

You can write your diary on the website so that if some one want to know your update they can just check out your website and you don't have to send them an email ...

Give a look at: http://www.why-cancer.com/diaries/benhoole/

And if you want to have one, let me know...

Cheers,
_________________
Corner for cancer patients
http://www.why-cancer.com

Debbiefix · Regular Joined: 01 Jun 2006 Posts: 15 Location: CT

[quote="anjou"]an extremely active lymphoma support board can be found at

www.lymphoma.com Look for the message board[/quote]

Anjou, you're here too! Hi there. I just found this one.

Debbiefix · Regular Joined: 01 Jun 2006 Posts: 15 Location: CT

[quote="stella"]im only new to the site so i'm not sure if i should have an opinion on anything yet but its not in my nature to keep my trap shut Laughing

so i fully agree with you we are here unfortunately for the same reason for support . these are some of our darkest days ahead . it wouldnt kill people to reply Embarassed

[/quote]

sometimes these questions would be best answered by a doctor and not give out opinions. When people say, "What could this be?" they're already on a cancer forum, so they know it could be lymphoma. Only biopsies and other tests could tell them more than what they already know. Enlarged lymph nodes are either a sign of infection or "something else". Either way, they need to be checked by a doctor. lol

anjou · Experienced user Joined: 01 Jul 2005 Posts: 65

dont come here much, just peak in now and then anjou
_________________
Follicular lymphoma grade 3, stage 2 dx 9/99 CHOP x 3 3600 rads rituxan x4

kerry77 · New User Joined: 29 Jul 2006 Posts: 1 Location: England

Hi, everyone. Just thought I should reply seeing as I read your post. Whatever's happening we should all try to keep our chins up, laugh at the funny things in life and just try to stay as positive as we can. If you start to get to depressed, it might only make things worse. I was diagnosed last Friday as having a very rare and very difficult to treat peripheral t-cell NHL. I am going in tomorrow for three weeks intensive chemo. I'm 28 with a three and a four year old daughter. I read them a story and put them to bed a couple of hours ago and now I am enjoying a nice glass of wine, it might be my last one for a while and what harm can it do now really... Anyway, I will hopefully be able to give everyone loads of encouragement in a month or so when I'm back to my lovely old self. Take care, set yourselves targets - mine is taking my daughter to nursery in September for her first day - and just remember; there are new breakthroughs treatments everyday.

Debbiefix · Regular Joined: 01 Jun 2006 Posts: 15 Location: CT

I have a feeling you'll do just fine! Lots of good luck for success and of course a remission and cure!

alihamilton · Regular Joined: 31 Oct 2004 Posts: 21

Hi Kerry! What a wonderful attitude you have! I wish you all the best with your treatment. I hope you will post when you can to let us know how you are doing.

Take care,
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Alison

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