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Done with treatment...but it is not over.

amsokol
amsokol Member Posts: 2

Hi there. Just coming up on my first follow up scan after treatment for Hodgkin's Lymphoma and am just as anxious about this as I was about the initial treatment. Do any survivors with a few years under their belt have any advice or insight on follow up scans? I just completed treatment a few months ago and the remission side of things has been just as tough and confusing. Every little ache and pain makes me completely paranoid that a recurrance is under way and I'm finding it hard to dive back in to normal life work/friends/etc when this is consuming my thoughts daily. Any tips on staying healthy post treatment (besides basic diet and exercise) or advice on life while in remission would be most appreciated.

Comments

  • Sten
    Sten Member Posts: 162
    Follow doctors' advice

    Hi amsokol,

    I am also in remission since two years from primary central nervous system lymphoma (PCNSL). 

    My advice is to follow your doctors' advice and live a sound life.

    Sten

  • Folks24
    Folks24 Member Posts: 106
    Sten said:

    Follow doctors' advice

    Hi amsokol,

    I am also in remission since two years from primary central nervous system lymphoma (PCNSL). 

    My advice is to follow your doctors' advice and live a sound life.

    Sten

    Worry

    I understand about being worried the cancer will come back after treatment. I think it is all in the back of our minds. In time you will sort it out in your mind and be able to get on back to your "new normal".  Hopefully the people around you are supportive. I have a "doom and gloom" cousin that i learned NEVER to talk medical stuff with. You can imagine the type. I always say I am a Survivor - not a victim.

    I recently had an issue come up where I was hospitalized for 4 days. My lymphoma came back was a possibility but thankfully it turned out not that. It is normal to feel leary as what to is down the road. But if you are always looking way down the road, you never see or enjoy the beautiful roses along the side. Enjoy your life - you tough Survivor you!

  • amanda_christy
    amanda_christy Member Posts: 60
    U need to giv urself a break.

    U need to giv urself a break. Uve been through a very traumatic diagnosis and it may now be beginning to fully sink in. It will get easier after uve done this a few times and definitely after ur 1st scan comes back all clear :-)

    :-) Im halfway through treatment for early stage HL and i dread the first scan post treatment because i just know iwill be obsessing! my husband know 2!!! lolz :-) poor guy!

    It may take some time but maybe after this scan u will begin to regain ur confidence and 'dare to live'.

    You'll be fine though.

    Plz let us know the good news when ur results r in xx

    Christine

  • "5"

    Amsokol,

    I've been in remission for just over five years now, and we have some writers here who have been in remission for 20 or more.

    This anxiety regarding possible relapse is almost universal. Just about everyone discusses it at times, especially in the weeks just before a scheduled scan.  It gets easier as the years pass; it did for me, and that seems to be the sentiment among others as well. I have been getting only blood tests for about three years, and those are equally anxiety-producing.  Every little imperfection in the results becomes a fright. I currently have calcium a little high, but that is apparantly caused by a diuretic drug that I take for blood pressure. I was anemic two years ago, and the doctor got quite upset and had me start iron infusions and a variety of other tests, but everything was negative, and the anemia has not returned. No one knows why, and anemia in some people with no discernable cause can persists for years or even decades.

    Stay busy ! Your mind will gradually move away from this. It is still VERY EARLY in your post-treatment life.  

    When not working, stay active with a hobby -- anything.  Pets are benificial to many (including me).   Also: DO NOT read a lot about lymphoma ! I'm not saying to be unaware, but obviously, time spent reading about the disease is going to be a reminder of the disease. I do NOT include in this this Board, of course, which is quite helpful to most.

    The WORST reading is anything on the internet that is not from an academic or university site. Remove things in your house that might remind you of the treatments; don't leave your next scan appointment on the front of your fridge. Little, common sense things.

    Know that friends and relatives are very often uneasy regarding people with former cancers, and will not know what to say. Some will seem to be avoiding you, just because it is awkward.  I got many people over that by volunteering information about myself to them, out of the blue. I would initiate a cancer discussion with them, and it seemed to help many people.  Not every survivor is comfortable with this, so do what feels natural to you.

    You will be relaxed and into the next stage of wellness soon,

    max

  • Kath1492
    Kath1492 Member Posts: 2
    Feeling grateful but so lost!

    Hi!  I can completely relate!  I had my last chemo treatment on Sept. 5th for Burkitt's Lymphoma.  My treatments consisted of 5 1/2 days in the ICU every third week for 24 hour infusions.  I had my first post treatment scan on October 28th and gratefully I am Cancer free!  I feel tremendous gratitude, but at the same time I have never felt so lost.  I am not the same person I used to be!  I don't look the same, or feel the same, or see life in the same way!  How do I go back to my "old" life?  Or should I change everything?!  It's the strangest feeling to not recognize your own life anymore!  I'm planning on going to a support group that I just found out about later this week.  I'm hoping that will help!  I just really need to talk with others who have experienced these feelings.  As far as the fear of recurrence goes, I'm relieved to hear that this is perfectly normal.  I want to get out there and live my life fearlessly, but so far it's a challenge!!  Good luck and keep in touch.  This is my first time on this website.  I think it's going to be very helpful!  Sorry my comment was so long.  I think I just had too much on my mind!!

  • Welcome to the club!

    as Max says, we are all a bit different in both our disease and how we deal with it. I am very stoic concerning my cancer. That works for me. I have indolent FNHL. I am in "quasi" remission meaning the cells are still there but stable for the moment. I hope you look at the fact that Hodgkins is curable! Wow, I wish FNHL was curable! It takes time to adapt. Just stay busy and do something daring and death defying. Show that you and not the now cured disease are in charge. Its your life, so enjoy it. For me an act of defiance works. I  am sure that you will find what works for you. Time will help.

  • Kath1492
    Kath1492 Member Posts: 2
    unknown said:

    Welcome to the club!

    as Max says, we are all a bit different in both our disease and how we deal with it. I am very stoic concerning my cancer. That works for me. I have indolent FNHL. I am in "quasi" remission meaning the cells are still there but stable for the moment. I hope you look at the fact that Hodgkins is curable! Wow, I wish FNHL was curable! It takes time to adapt. Just stay busy and do something daring and death defying. Show that you and not the now cured disease are in charge. Its your life, so enjoy it. For me an act of defiance works. I  am sure that you will find what works for you. Time will help.

    Thank you!

    Thank you so much for your encouragement to get out there and do something daring!  I love what you said about the fact that I am in charge, not the now cured disease!!  This is the kind of stuff that I need to hear.  Thank you again!!  All my best to you!!

  • jimwins
    jimwins Member Posts: 2,107
    Hi Amsokol

    Welcome.  I've kind of taken a break from posting for awhile but I have been reading posts some.  I think what you're experiencing is very normal and the others have given you some good insight/advice.  I honestly think cancer treatment should include some follow up counselling because after it's all over, a lot of the psychological aspects start raining down and it is difficult to deal with.  The anxiey or "scanxiety" as some call it is very common.

    You are welcome to come here and vent and discuss.  We have lots of cheer leaders here :).   

    Hugs and positive thoughts,

    Jim

     

  • givingrace
    givingrace Member Posts: 161
    jimwins said:

    Hi Amsokol

    Welcome.  I've kind of taken a break from posting for awhile but I have been reading posts some.  I think what you're experiencing is very normal and the others have given you some good insight/advice.  I honestly think cancer treatment should include some follow up counselling because after it's all over, a lot of the psychological aspects start raining down and it is difficult to deal with.  The anxiey or "scanxiety" as some call it is very common.

    You are welcome to come here and vent and discuss.  We have lots of cheer leaders here :).   

    Hugs and positive thoughts,

    Jim

     

    Wow !
    I have been dealing

    Wow !

    I have been dealing with some crazy stuff lately and getting very "disconnected" and am in so much discomfort right now physically and emotionally and I just read this whole thread and I feel not so alone.

    Yep I gotta say this forum is extended family who can and will be more understanding than even our selves because of experience. 

    Love you all so much! 

    ~GG~