Mixed feelings now that my treatments are done.

bobmcghee
bobmcghee Member Posts: 44 Member
in Lymphoma (Hodgkin and Non-Hodgkin) #1

After over two and a half years of going for radiation, r-chop and rituxan maintanence it feels strange to have no more treatments planned. I did get a good pet-scan in January so that is good news. I really have nothing to complain about and yet I feel unsure of what happens next. I was just curious if anybody else in this position had similar thoughts.

Thanks,

Bob

Comments

  • Machir
    Machir Member Posts: 32
    #2
    YEP

    Hi Bob.  Great news on the end of treatment and a good PET scan.  From my experience what you are feeling is normal.  You find out you have it and your world changes overnight.  Then you spend a couple years battling it and that starts to seem normal.  When the treatments are up and it's time to go back to a world without fighting the cancer that change can seem like a pretty big deal too.  I can tell you that after some time it went away for me.  If you miss it you'll get to revisit it at scan time.  I don't know who coined the phrase Scanxiety but even after successive clean PET's where I would literally not think about cancer for weeks or months at a time I'd get to two weeks before a scan and it comes back.  Can't speak for everyone else but for me what you describe is consistent with what I went through.  Congrats again on reaching a big day.  Good luck in the future.  Mac

  • sherry84
    sherry84 Member Posts: 16
    #3
    Hi Bob,
    I totally agree that

    Hi Bob,

    I totally agree that what you are feeling is totally normal. I had my diagnosis and treatment in 1984 and although my treatment period was shorter then yours, I also felt right after I went into remission like ,"what do I do now?" Cancer just interrupts your everyday life and then you are thrown into this hostile alien world of chemo/radiation/surgery just to survive. It takes over your body and mind. When treatment is over, then it's time to get reintergrated back into everyday life. I always refer to this period as being transported suddenly without warning to Mars and then as suddenly, returned to earth. The good thing is that as you get further and further away from treatment, the memories of what you've been through will not have as strong a hold on you. Eventually, the cancer no longer takes center stage and other aspects of your life take over. In my case, I had a wedding to plan, apartment and job hunting, etc. There will always be a concern way back in my head since it is now a part of my history but the anxiety no longer takes over.

    It does get easier with time. BTW, a big congrats on a good pet-scan.

  • bobmcghee
    bobmcghee Member Posts: 44 Member
    #4
    sherry84 said:

    Hi Bob,
    I totally agree that

    Hi Bob,

    I totally agree that what you are feeling is totally normal. I had my diagnosis and treatment in 1984 and although my treatment period was shorter then yours, I also felt right after I went into remission like ,"what do I do now?" Cancer just interrupts your everyday life and then you are thrown into this hostile alien world of chemo/radiation/surgery just to survive. It takes over your body and mind. When treatment is over, then it's time to get reintergrated back into everyday life. I always refer to this period as being transported suddenly without warning to Mars and then as suddenly, returned to earth. The good thing is that as you get further and further away from treatment, the memories of what you've been through will not have as strong a hold on you. Eventually, the cancer no longer takes center stage and other aspects of your life take over. In my case, I had a wedding to plan, apartment and job hunting, etc. There will always be a concern way back in my head since it is now a part of my history but the anxiety no longer takes over.

    It does get easier with time. BTW, a big congrats on a good pet-scan.

    Thank you both for the reassuring words.

     It's good to hear that this is more common than I thought. Last night I talked to my sister-in-law who  has recently completed all her treatments for breast cancer and she also has been having 'now what' thoughts. Anyway it's time to start my tomato plants inside so they will be ready for the warm weather. I'm really looking forward to spending time outside, this winter seems to last too long. Thanks again. 

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #5
    "It's Over"

    Bob,

    I have been "clean" (C.R.) for about 4 years now. Initially, my doc and the surgeon who did my biopsy acted as if I had little chance to live, but they were not oncologists, and were basing their reactions on my CT scan only. As things went along, the news got better and better (an indolent form of HL, no organ involvement, etc.).  Now, my prognosis is very good.

     Being "well" takes some time to get used to.  Expect it to be a slow process. From much of what I have read here, it is never 100%.  When we would come into port after 90 days or so on the submarine, the ability to go ashore and live normally seemed odd, and took adjustment.  We once went 72 days with no fresh air, and the sea breeze on the 73 day made guys cough -- the opposite of what a person would expect.  I feel cancer recovery is a little bit similiar.  Be active, and do not dwell on your sickness is perhaps the best advice I can share.  Also, routine checks and scans will be frightening for a long time. It is just human nature. 

    max

  • allmost60
    allmost60 Member Posts: 3,178 Member
    #6
    YES...

    Hi Bob,

     I know exactly how you are feeling. I finished my 2 year Rituxan maint the end of February and currently waiting to be scheduled for my follow up CT scan to see if it worked. I'm anxious to know if I'm in remission, but have tried hard to stay peaceful until scan and results are in. Right now I am dealing with shingles, so my stress level is off the hook! Went to the ER last night due to severe pain and was sent home with a pain patch and STRONG pain med...which is working quite well today. Hopefully(knock on wood)...once I'm over the shingles and scan results are good, I'll have years and years of remission. Can't wait to hear NED..(no evidence of disease). Get on with life Bob, and enjoy EVERY minute of EVERY day! My prayers and best wishes are with you. Sue (FNHL-2-3A-6/10-age62)

  • bobmcghee
    bobmcghee Member Posts: 44 Member
    #7
    allmost60 said:

    YES...

    Hi Bob,

     I know exactly how you are feeling. I finished my 2 year Rituxan maint the end of February and currently waiting to be scheduled for my follow up CT scan to see if it worked. I'm anxious to know if I'm in remission, but have tried hard to stay peaceful until scan and results are in. Right now I am dealing with shingles, so my stress level is off the hook! Went to the ER last night due to severe pain and was sent home with a pain patch and STRONG pain med...which is working quite well today. Hopefully(knock on wood)...once I'm over the shingles and scan results are good, I'll have years and years of remission. Can't wait to hear NED..(no evidence of disease). Get on with life Bob, and enjoy EVERY minute of EVERY day! My prayers and best wishes are with you. Sue (FNHL-2-3A-6/10-age62)

    Thanks

    Thanks Max for your kind words,  and  I am really sorry Sue about hearing about shingles. I've never had that but I hear bad things about it. Last year I had pleurisy for several months and I don't recommend that either. After trying pain pills the doctor tried prednisone which worked but we all know taking prednisone for any amount of time is not good either. On my pet-scan I didn't get "NED" but I think this is the same thing..'Impression: No evidence of metabolically active FDG avid residual or  recurrent lymphoma.'.   Sue, I sure yours will be next.

    Bob

  • illead
    illead Member Posts: 884 Member
    #8
    allmost60 said:

    YES...

    Hi Bob,

     I know exactly how you are feeling. I finished my 2 year Rituxan maint the end of February and currently waiting to be scheduled for my follow up CT scan to see if it worked. I'm anxious to know if I'm in remission, but have tried hard to stay peaceful until scan and results are in. Right now I am dealing with shingles, so my stress level is off the hook! Went to the ER last night due to severe pain and was sent home with a pain patch and STRONG pain med...which is working quite well today. Hopefully(knock on wood)...once I'm over the shingles and scan results are good, I'll have years and years of remission. Can't wait to hear NED..(no evidence of disease). Get on with life Bob, and enjoy EVERY minute of EVERY day! My prayers and best wishes are with you. Sue (FNHL-2-3A-6/10-age62)

    AAArgh Sue!

    You must feel like you've been beat up.  It doesn't seem fair that after all you've been through and finally on the other side of the monster, you get something STUPID like shingles.  It's undignified for such a dignified lady!  We know you'll hang in there and we're thinking of you. Bill and Becky

  • anliperez915
    anliperez915 Member Posts: 770
    #9
    allmost60 said:

    YES...

    Hi Bob,

     I know exactly how you are feeling. I finished my 2 year Rituxan maint the end of February and currently waiting to be scheduled for my follow up CT scan to see if it worked. I'm anxious to know if I'm in remission, but have tried hard to stay peaceful until scan and results are in. Right now I am dealing with shingles, so my stress level is off the hook! Went to the ER last night due to severe pain and was sent home with a pain patch and STRONG pain med...which is working quite well today. Hopefully(knock on wood)...once I'm over the shingles and scan results are good, I'll have years and years of remission. Can't wait to hear NED..(no evidence of disease). Get on with life Bob, and enjoy EVERY minute of EVERY day! My prayers and best wishes are with you. Sue (FNHL-2-3A-6/10-age62)

    Hi Sue

    Hi Sue,

    I hope you're feeling better, I'm sending you a warm hug from TX. and lots of positive vibes on your upcoming scan. 

    :D 

    Sincerely 

    Liz

  • jimwins
    jimwins Member Posts: 2,107
    #10
    Surreal not to be in survival mode

    Hi Bob,

    I can't add much to what's already been said but I think it's normal to feel that way.  I completed treatment and have been in remission now for about 1 1/2 years and I'm very grateful but there is this sense of what next, is it going to come back, etc.  There's a little sensation of "other worldliness" as well.  I've crossed the other side of diagnosis, surgery, and treatment and it's kind of surreal sometimes.  I don't really know how to describe it but I think it is probably normal.  I suppose I was so much in "survival mode" throughout the experience that it feels odd not to be in the same state. So, to answer your question, "Yes".  I have had/am having similar thoughts. 

    Best wishes,

    Jim

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