Hi Amy and welcome to the boards!  Pull you chair on up around the kitchen table, kick off your shoes and make yourself to home.  Let me get you a cup of coffee or a cold iced tea....  Maybe Jane (another board member) will drop by with some fresh baked cookies (she's the Cookie Monster and our resident baker in the virtual coutry kitchen).

You're right - those who haven't walked in our shoes don't really get it and think once we're pronounced "in remission" things just go back to "normal" but they don't....not for us....  We're forever changed and we sometimes struggle with finding our own "new normal".  Lymphoma is a tricky beggar - it's like shooting at a moving target and unlike most other cancers.  Ours can't be cut out, there's not a lot of talk of "cured" especially with follicular NHL which I'm assuming you were dealing with since you've had some Rituxin follow-up, there's talk of it being "treatable" and a "chronic condition" (like diabetes or high BP) that can be controlled but even that lends itself to the uncertainty which becomes our life.  So, nope, even those who have dealt with and beaten back those other types of cancer don't necessarily understand.

Add to that lingering effects of chemo...the joint and muscle pain, emotional aftermath, weight gain, edema, neuropathy, and the list goes on... it just adds to the reminder that we were/are cancer patients.  Be kind to yourself as you work your way thru the muck.  It takes many months for it to really feel like a corner has been turned. 

I've been dealing with NHL since 2001 - was in remission for 3 years but since summer of 2005, I've been in treatment more than out.  I'm smack in the middle of my 6th battle with the beast.   Three times with DLBC and 3 with fNHL and am part of a clinical trial testing ESHAP (chemo) + Zevalin (a radioimmunotherapy or RIT).  Next week, I get the RIT and then we'll see if I get into a long(er) remission.  I'm keeping everything crossed! lol  The good news is that even though my path has taken a lot of twists and turns, I'm still here!  When it pops in, we try something else....there are many options out there and we just have to find the right combo!  Whatever comes my way - I try to accept it with grace and just do what I need to do.

Geez I ramble sometimes!  LOL Well, those who know me may say I ramble ALL the time!  So, let me freshen your beverage?  Hope you will come back and we can 'talk' some more.  There are many on here who have walked the same path and we're here for you as well!  You're among many new friends. 

Peace and blessings

Sharon 

Hi, Amy.

I am 1 year out from dx 5-1-08. I had chemo then Bexxar in Oct. 2008. I am really struggling

with the after effects. I feel like you do about not being the same person. I want my

pre-cancer life back, but I know that won't happen. It's frustrating. The fatigue is

unbelievable. It won't let up. I think my last inpatient biopsy surgery just kicked

my butt. I was diagnosed with Stage 3, Grade 3 follicular lymphoma. My onc

has yet to use the "R" word, but the last PET looked pretty good.

I do worry about relapse and a secondary cancer.

I simply want to feel half-way good each day. I want to enjoy life like I used to.

I try to remain positive, but some days it's a struggle. I think my body is just

really worn out.

I feel fortunate to be 1 yr out. And hope to make it to 5 yrs out w/no major

relapse. Hang in there! I will keep you in my prayers that you begin to feel

better and more like yourself.

Best wishes,

Pam from Kentucky

Hi Amy,

Glad to see you post again.  I know exactly what you're talking about when you say that don't tell you how much it beats you up after treatment is over.  My husband had a co-worker write him an e-mail to warn me about the flood of emotions afterward and I didn't think much of it until the emotions hit me full force.  Oh my, it was an avalanche it seemed.

Now that I am two years and five months out of treatment with a small relapse behind me (no treatment needed for it), I'm coping better.  I believe over time you'll find your emotional balance, with your "new normal".  I hope and pray you will. 

Hugs and blessings,

Jane

Hi to Amy & Everyone,

I finally figured out how to use this new area. I understand all that you said and I agree. My DX.

was stage 2 NHL B-Cell, I'm 62 yrs. old with pain, stiffiness, and emotional ups & down, my doctor

says to forget the C word and go on living. But each 6 month check up they do a Pet Scan, and 

always find a symptom. Then the pet comes out find. Another roller coster ride for my fears of

return. I'm am attending counseling, but not support group, to far away. The weakness in my legs

is the worst, and the off and on againg of the fatigue is so upseting. The counslor says I've come

along way since I started. But I feel like a different person, does anyone have what I call the rages.

I get so mad so easy, I used to be the one in charge, not any more. Dealing with all this is constant

and seems to be the new normal. UGH, I am rambling sorry. I just need the cookies and coffee again.

there are people out here that are having the same feelings at the same time, so lets eat the cookies

and be sane as possibe.  Take Care, Kathy

The first time I ever posted, in March or so, I was a psychological mess.  I thought I was loosing my mind and felt guilty because I was declared cancer free in February and I should be appreciative.  I didn't understand why I wasn't running with life but I had fear and intrepidation.  I was tearful and for the first time in my life, explosively angry.

I started to attend a cancer support group offered by the local hospital.  The social worker was a lovely and inviting woman.  I met with her to share my loss and confusion and guilt.  Her words were simple and to me, they made so much sense.  I was going through the grief cycle.  What I knew as my life was no more, my life had forever changed.  Tomorrow was no longer guaranteed as I thought it was prior to my diagnose.  She showed my a picture of the cycle.  She described anger to me and I thought to myself, I don't have anger, I dealt very well with my cancer.  Then the longer I pondered the picture of the cycle I realized and did acknowledge I was going through the anger.

Being one to research for answers, I came home and got on the internet to find any articles on the cycle of grief.  I finally came to my "jack pot" in finding articles specifically for those who have survived cancer and the psychological after effects.  The articles were actually webcasts so I could watch and listen.  I learned I was very normal.  Through the webcasts I accepted my new life and the uncertainties of tomorrow (really uncertainties is every person's reality).  I came to the last phase of the grief cycle - acceptance.

The following web sites are the ones that educated me and brought me the acceptance of my mantle cell lymphoma.  I hope you and others might find them equally encouraging.  And if any one has a cancer support group available to them, I would attend, even if you spend the first few meetings in a teary, frightened mess - those who sit with you have already been there.  Now I can support the new diagnoses and let them know they are not alone.

apos-society.org/professionals/meetings-ed/webcasts/webcasts-survivorship.aspx#

www.massey.vcu.edu/patients/?pid=1935

www.lymphoma.org/site/pp.asp?c=chKOI6PEImE&b=1574367

jackie7,

i empathize with you!  i remember how achey i felt and every time i got up from a chair,etc., my feet hurt and i hobbled a bit until my joints loosened up.  and i agree, and it makes sense, the toxins were leaving our bodies and this was one of the side effects.

again, i think the most difficult phase of chemo is finishing, all done - now what?   as patients we are so focused on survival and our whole life becomes a treatment schedule and tests to see if our treatment is having an effect and killing off our cancer.  i felt like i was on a bullet train in a tunnel traveling as fast as possible to get to the other side.  once i was done with 9 months of treatment, i was left at the train station platform, now what?  what do i do now?  i just had cancer.  i am done.  life is not the same.  who am i?  what am i to do with my life?

i don't know if you tried the web sites i posted at the end of my entry, but they were very helpful to me.  also, the two hospitals i was treated at had social workers, i found one very helpful and she was the one that introduced the "grief cycle."  another help could be asking if there might be a mentoring program at your hospital or oncologist office.  mentoring from a fellow patient is wonderful, they have gone through very similar situations and have probably dealt with the same questions.  i found fellow patients to empathize and understand where my husband, as supportive as he was, my family and friends just quite didn't get the mental pain i was going through.  when i got to the whole "its all done" psychological phase (others may not experience this), if i talked about my confusion, i feared they thought i was "depressed", "dwelling too much and not appreciating the fact i was cancer free", etc.  it can be a pretty loney place.

and a just between you and me, having had all the support i did, all the blog guestbook entries and well wishes, then the great news of cancer free, all the support evaporated.  really weird.  i needed them just as much afterwards as during!  and at times, i could still use some good words of encouragement.  oh, well . . .

i hope this has been a bit more helpful.  you are not alone, you are not crazy, you are not weird!

bless you!