Long-Term Survivor - Possible Recurrence or Second Cancer, Rough Time

lucyofnarnia
lucyofnarnia Member Posts: 4
in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hey, everyone.

I'm a long-term Hodgkin's survivor (details available in my profile). At present I'm experiencing night sweats/overheating plus generalized itching, which of course could be absolutely anything, but could also be lymphoma, either Hodgkin's or NHL, so my hematologist is on it. I see him Thursday afternoon for evaluation.

I'm kind of in a rough patch right now. I feel like nobody understands what I'm dealing with; everyone thinks that 22 years after treatment I should be just ducky. Darn it, it's tough...lots of late effects, and I haven't been able to work for many years now, and I'm just at the frustration point. I don't have much help; my husband and I are a dual-survivor couple and I'm the only one of us who can drive (he lost peripheral vision due to an optic nerve tumor), and it's just...ugh. We do a great deal for our church as volunteer helpers, but it seems people really do not want to know if you're having a rough time; they'd much rather I was all chipper and upbeat and denying it all. :P

The way I know I've hit depressed point? Well...I actually am frustrated enough that I would RATHER be hospitalized for infections, which are a real problem for me as an asplenic survivor who also has lupus requiring immunosuppressants daily. I mean, I hate the hospitals and I hate needles even more and so on and so forth, but...at home, if I'm sick, I have to try and get out and get grocery stuff and the like and basically live on Campbell's soup all week or however long till I feel like cooking again, plus - if I don't handle it, it doesn't get handled. My husband's mom and dad will kind of help him out if I'm in the hospital, but not so much if I'm actually home; they sort of seem to figure that if I'm here, I should be able to deal with whatever needs addressing, whether it's cooking meals or getting groceries or checking whether we need meds refills or whatnot. And people from church are pretty much all about when-will-you-be-back, for the class I volunteer with, or the group my husband and I help with and host, or whatever. So...in short, I don't feel I get the help I need when acutely ill unless I actually AM an inpatient. And around here they just about won't admit you to save their lives. We moved some years back, and frankly it's been better for me healthwise in terms of stress and friendships, but far worse as access to quality medical care goes.

So yes, I needed to vent that. Thank you for reading. And please don't flame me...I'm just saying how I really feel, and how frustrated I am. I'm not saying it's a good way to feel, just that it's how I DO feel right now.

Man, did it ever feel better to type all that out....

Good luck, everyone.

Cheers,
"Lucy"

Comments

  • Michele23
    Michele23 Member Posts: 168
    #2
    Long journey
    Hi Lucy,Welcome,you can come here anytime and vent as we wear those same shoes you do.That's a lot to deal with at such a young age,you must be a very strong person to carry that load.I can fully understand your fear with those tell tell symptoms,and most people are clueless when it comes to cancer.Heard that a million times over the years about being cured,then if you disagree they tell you your not being "positive".It's a crazy circle and makes me want to scream sometimes also.We can't go shopping or make dinner here but we can be here for you when you need someone to talk to who does understand.So please come back anytime chat and update or whatever makes you feel better.Sending good thoughts along with a sunny day.Try and keep your chin up.God bless,Michele DX95 FNHL3
  • miss maggie
    miss maggie Member Posts: 929
    #3
    Hi
    Dear Lucy,

    How wonderful you have been a 20 year survivor. I bet, the possibility
    of the cancer returning is disheartning.

    It is always a good idea to let out your feelings and not let it eat
    you up.

    My fingers are a bit numb. Therefore, I will post a bit more at a
    later date.

    All my love Maggie
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #4
    miss maggie said:

    Hi
    Dear Lucy,

    How wonderful you have been a 20 year survivor. I bet, the possibility
    of the cancer returning is disheartning.

    It is always a good idea to let out your feelings and not let it eat
    you up.

    My fingers are a bit numb. Therefore, I will post a bit more at a
    later date.

    All my love Maggie

    Welcome Lucy
    Hi Lucy,
    I read your "about me" page and was very impressed at your positive attitude dealing with long term survival of this disease. I don't think we ever completely get use to having cancer in our bodies, but I have a feeling you will handle anything that crops up. When you feel weak or at the end of your rope, or just need a place to "get it all out"...we will be here for you. I have barely scratched the surface of learning how to deal with my cancer, but together as a group we can help each other make it through. Please keep us posted and I'll keep good thoughts for you. Once again.."Welcome". Love...Sue (FNHL-2-3A-6/10)> Follicular NHL-Grade2-Stage3-Dx June 2010(age 60).
  • JoanieP
    JoanieP Member Posts: 573
    #5
    Welcome
    So sorry you have been going through this rough time. You have come to the right place. There are some great people on this site.
  • LarrySurvivor6
    LarrySurvivor6 Member Posts: 5
    #6
    You can do it
    I am a six time surviver. I worry everyday but learned to just keep fighting. i dont sweat the small stuff
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    #7
    LarrySurvivor6 said:

    You can do it
    I am a six time surviver. I worry everyday but learned to just keep fighting. i dont sweat the small stuff

    6 times
    Wow Larry, I can't imagine doing this 6 times although I am on 4 myself. Getting ready to do a stem cell transplant and hope it takes care of this for good long time!

    Take care,
    Beth

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