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finally done with treatment and on maintenance and more afraid than ever / Why?

Sparkyz
Posts: 17
Joined: Sep 2010

I have Stage IV Grade 1-2 NHL Follicular B-Cell. Age 39, Original Diag was made in Nov.09 and revealed I had all over body, Marrow and Spleen. Am doing well after 6 months on Treanda + Rituxan. Currently on maintenance but may stop too many Rituxan reactions. At the moment nothing in bone marrow and most nodes except in abdomen have shrunk. Spleen is smaller. My question: Is this normal to be afraid , waiting for it to strike again or am I just insane? I probably should have joined this discussion site a long time ago but I think just now I am finally coming to terms with having cancer.
I appreciate any words from any one, Thank you!

vinny59's picture
vinny59
Posts: 1032
Joined: Nov 2006

It sure is normal to have those feelings! This is my second go around with cancer, I tried to live a normal life and accept the fact that I have no control whether or not it's going to come back. For me it did, I don't know if the treatments knocked it all out yet or not, but I hope and pray that it did. Vinny

Sparkyz
Posts: 17
Joined: Sep 2010

Thanks for replying. Glad Im not crazy. Its amazing how strong I was emotionally during chemo and now how vunerable I feel at times. I guess I have no choice but to take it one day at a time regardless to keep sanity in my house. I put on a good front but my wife of 20 years sees right through it. Thanks again for replying!

vinny59's picture
vinny59
Posts: 1032
Joined: Nov 2006

I'm the same way, be strong for your family.... hahahaha My wife sees right through it to!

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

I think the most afraid I have ever been was when I finished treatment. Everything came to a screeching halt and I didn't know what to do with myself.

I think this stuff always stays with us and the fear never really goes away although I think at times it gets better.

Stay tough, and yes our spouses see through us....mine too!

Beth

truckingalong
Posts: 444
Joined: Aug 2010

It is normal to keep strong through challenging times then break down - a delayed reaction. We all need to process our feelings one way or the other and then you can say - wow, what can I do to process those feelings? Most importantly, take the time to focus on yourself and do what helps you to let go of emotional baggage or what is left behind. Then you can enjoy whatever you do and appreciate Life more!

With good thoughts,
Liz

MNK
Posts: 12
Joined: Jan 2010

Your fears are a normal reaction to what you have been through. After 6 months of battling your disease and being proactive it hard to stop fighting. The questions that I think we all ask after we stop treatment, Is what can we do to minimize the possibility of relapse? Isn't there something we can or should be doing to fight our disease? Rest assured your fears are normal. Your fears will pass it just take times.

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

The other posts said it all so well. I remember finishing treatment and being in remission and it felt so odd. I was happy and knew that I should be but also really wary of how I should feel. We all worry about it's return as we are told from the beginning that this is the problem with this disease. It put me in completely uncharted territory and it takes awhile to mentally figure out the game plan. As someone said after so long a time of nearly constant care...boom...alone with it. But you're not really. The Md's are there if you need them and you will still be followed up but it's a big adjustment. It gets easier the more time you spend in remission I hope. Good luck. Mary

Sparkyz
Posts: 17
Joined: Sep 2010

Wow! Thank you all for the kind words of encouragement. I am new to this site I really wish I had signed up for it when I first was Diagnosed but I am just coming to terms with my cancer now. It's nice to meet and make new friends going through the same thing. Gives me hope that I can get through it.

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

I'm glad you found this site too. I thank God for it. It has been my Savior more times then I can count. And yes it really is a Godsend to talk to those that are in the same spot. Everyone here is so supportive and so kind. I don't think there is a question or problem or feeling one could have that someone here can't help with. Look forward to hearing from you. Mary

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

I am sorry you are on this journey. You are so completely normal. I am on effexor er (antidepressant) My Onc recommended for warm and cold feelings. It has helped me so much.

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi...I think it's perfectly normal to be afraid. I haven't even finished treatment nor gone into remission and I find myself trippin down that "what if" road of what the future may have in store for me. I think for me, I'll always wonder and worry to some extent because at this time there is no cure...it's just treatable.
Take care and try not to worry too much...Sue (FNHL-2-3A-6/10)

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