FYE-

I think your worries are perfectly normal and justified. I don't know that I will ever stop worrying, on some level, about this horrible disease coming back or what I might face in the future as a result of chemo damage. I don't know that you will find detailed answers to your questions though, because I think there are a lot of things the docs still do not know. Plus, you have to remember that statisitics are just averages and do not speak to individuals, so there is always some mystery about what may or may not happen to each of us. I am hoping that as time passes, it gets easier to "tuck these worries away" and they willl not occupy so much of our mental energy. I think of people who live on or near fault lines in California. If they let themselves think constantly about what could happen if they get an Earthquake they would not be able to function. They have to engage in some level of denial to go about their lives. I believe we have to do the same. On the other hand, we should not be in total denial, so it is good to be informed so that you can pay attention to your body and be alerted when something does not seem right. I have met a number of people in a cancer support group I attend who had no symptoms they could identify prior to their diagnosis. I think that is one of the really scary things about cancer-- it is a disease that really sneaks up on us. I hope you find some peace of mind with all of this. 

Hi Chris M

Yes, being in remission is a scary place, especially at the beginning. No-one warned me about the feelings that would absolutely engulf me. Like you I don't think I'd even started to come to grips with it until after treatment finished, during treatment I think I was just on auto pilot. After treatment I felt lost, abandoned, bewildered, confused, alone, terrified... I felt like I had started off as one big perfect jigsaw puzzle then someone came along and dismantled it, replaced it with three new puzzles, took a third of each puzzle away and expected me to piece the remaining pieces back together to form a new puzzle, very difficult. Am still getting my head around it all now - did I really do all that? How do I know it's gone? How do the Docs know it's gone? I guess there just aren't concrete answers to these questions, I do know that gradually you do get your head around it, it's been suggested to me by a few people in the business to perhaps not try and work so hard on getting back to where I was before all of this, but because things have changed and I can't "unknow" everything I now know, that it's more like finding a "new normal" rather than trying to get back to the "old normal" which has changed so much

During my chemo (6 cycles/12 treatments ABVD for stage IIB Bulky) they said that radiation was something to be considered at the end of chemo, depending on what the situation looked like then and how well I had responded etc. At the end I had a good PET scan and they said they would not recommend radiation for me as for me it would increase other risks etc and unless there was evidence of needing it then why would they, so I didn't have any. I'm still classified as in remission and I finished chemo about 22 months ago. The stats for HL are overall pretty good for treatment working from what I've been told, but also I, like everyone I think, know that some people do relapse, it's just one of those things that somehow at some stage we kind of come to terms with as survivors, and try and move on to live the best lives we can and if something comes up then it's a matter of dealing with it if it happens rather than living each day expecting it maybe

I hope this helps Chris, but know that you're definitely not alone in your feelings...

Kiwi

To all of you who have shared this common fear,

We all share the same emotions, regardless of what type of lymphoma we have had.  First, congratulations that all of you have made it to remission!  Yes, your experience is surreal . . . I understand that.  It has taken nearly a year to believe I am cancer free but now, finally, I have adjusted to and accepted my cancer and where I couldn't say I had cancer, now I can.

In my search for answers, I have found all these websites helpful.  They gave me a perspective that I am normal in all this aftermath of confusion and loss.  I am a part of an internet discussion group that shares just that, the onslaught of unanticipated emotion and how to sort it all out.  I found that site on this address:

www.cancercare.org/groups/instructions.php#select#select.

When the hole was too deep and I felt isolated and alone I sought therapy.  This has helped me tremendously and has validated every emotion, every fear.

I hope all of you will find solace in the following sites.  Be reassured, you are not alone in this time of uncertainty; if you seek support, if you seek education on your cancer experience, your life will upright one day.

My fondest support for all of you!

Cyndi

http://www.dcprovidersonline.com/bmtin/f6815e44261d53d8bdfedab7cd37fb3e//player.html

www.lymphoma.org/site/pp.asp?c=chKOI6PEImE&b=1574367
(Scroll all the way down to Caregiver and Patient Support)

http://www.cancercare.org/get_help/tew_archive/archive_detail.php?category_id=2
(Cancer Cares own webcast services)

Just listening to these was my first step towards emotion validation and recovery.  My therapist is the tool box and road map to final recovery.

Some more:

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

http://www.cancersupportivecare.com/Survivor/index.html

http://www.canceradvocacy.org/

I think those are pretty much all the sites I have found extremely helpful.  There are some free booklets and worksheets available.  I don't know, I think the more educated, the more active I am with my cancer and treatment and future, I more in control I feel.