Welcome long-term survivors!

135

Comments

  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    ron50 said:

    Hi all
    Thanks for the new board Greta. I was dx in 1998 with stage 111c colon cancer(6 nodes) I have been ca free ever since, as a matter of fact I have just had a scope and have been put out to three yearlies. I fully agree with Scouty. I have been out of treatment for so long that nothing I went thru is of much value to present day sufferers. Having said that more than a few people have said to me ,whatever treatment you had,I want it. My agreeement with scouty is about how we long tirmers have a whole different range of problems confronting us. Since ca I have had pancreatitis,lost my gall-bladder,suffered several bouts of kidney stones,developed moderate to severe neuropathy of the lower legs and left hand,developed three different lots of arthritis,dx with FSGS (scarring of the kidney filters),developed two frozen shoulders ,vertigo attacks(possibly menieres disease), and perhaps worst of all my wife and I separated. So now and for the last three years I live alone and have to deal with all of my ailments alone as well as keeping on working to support myself.
    One of my favourite sayings is "surviving survival ain't easy" . Many is the time that I have thought of opting out but I have managed to keep going. I don't get treatment for depression . I most certainly need it,I just don't want it. In the meantime I get by with a little help from my friends on these boards, Ron.

    Hey Mate!
    Glad to see you!!
  • Kenny H.
    Kenny H. Member Posts: 502 Member
    2bhealed said:

    Thank You!
    Greta!

    This board is a relief and a respite for me. It's been too hard to post much on our CRC board for me personally due to losing too many friends on there to cope with at times. But I still want to pal around with my buds on here so it's wonderful to see my semis chiming in here.

    Just wanted to add my $.02.

    For anyone else out there I'm a Stage III colon cancer survivor who has been cancer free for 9 years post surgery (8/01) having done only alternatives (juicing, TCM, acupuncture, etc) to heal my cancer.

    This board was one of my life savers at the time and the place I found friendships that have lasted (with those who are still alive) all these years. You know who you are! ;-) The ones who have gone on before us will remain in my heart forever.

    peace, emily

    Just lurking, hoping one day
    Just lurking, hoping one day I make it to LTS status.
  • Kerry S
    Kerry S Member Posts: 606 Member
    This is just what I needed today
    Greta,
    This is just what I needed today. This will be a great place the pump up the old attitude for me. Thank you!!!

    Kerry
  • allmost60
    allmost60 Member Posts: 3,178 Member
    Kenny H. said:

    Just lurking, hoping one day
    Just lurking, hoping one day I make it to LTS status.

    Lurking
    I'm a lurker also Kenny...we will be here someday!
    Sue
  • Marcia527
    Marcia527 Member Posts: 2,729
    allmost60 said:

    Lurking
    I'm a lurker also Kenny...we will be here someday!
    Sue

    Hey allmost60, I am
    Hey allmost60, I am justturned60. We must be related. Just kidding.
  • allmost60
    allmost60 Member Posts: 3,178 Member
    Marcia527 said:

    Hey allmost60, I am
    Hey allmost60, I am justturned60. We must be related. Just kidding.

    Hi,
    I turned 60 on Sept 30th and figured I should change my username, but couldn't find a way to do it. Soooo...looks like I'll be "allmost 60" forever...ha! Thats ok with me...it will always remind me that I was "all most 60" the year I was diagnosed with cancer. June 16th 2010 will be forever etched in my brain.
    Love...Sue (FNHL-G2-Stg3-TypeA-Dx6/10)
  • Christmas Girl
    Christmas Girl Member Posts: 3,682 Member
    Thank you, Greta - and your ACS/CSN colleagues!
    Just discovered this board - and am elated!

    I see many familiar folks on this thread. For those who don't know me yet:

    Am a Breast Cancer Survivor. Diagnosed July 2003. Surgery (lumpectomy), chemotherapy (horrific) & radiation finished March 2007. Joined the ACS BC Board about a year & a half ago - to mark my five year anniversary for completion of invasive treatment. Wanting to "give back" in another way, hoping to instill hope in others, provide support & encouragement.

    Still taking oral anti-BC meds (Arimidex). Yes, openly admitting here - I have long-term survivorship "issues"... Wow! That felt good! :-)

    Kind regards, Susan
    Christmas Girl
    because I was
    Born on Christmas Day
    (the title of my Profile Page)
  • kdwers
    kdwers Member Posts: 16 Member

    What constitutes a "long term" survivor?
    Hi Lisa , John and all -

    I think when you feel like a long term survivor then you are. Let's not be nerds and specify a number of years or whether or not you are in treatment.

    Lisa, I think this a great idea. I have been on this board since 6/2005, but lately am reluctant to post. My Stage IV journey has been different from most folks - in spite of a recurrence after 3 years, doing really well. I was diagnosed 5/05 and even back in 10/07 when I went to a CCA meeting in Baltimore, I joined the "survivor's" breakout group, cuz that's how I felt.

    See signature below. I just had a negative PET scan on Monday - was actually reluctant to share on the CRC board - hard to share really good news with folks who are really in trouble.

    Betsy
    diag. Stage IV, 5/05, liver met
    lap sigmoid colectomy, 6/05
    6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
    11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
    6 cycles Xeloda + Avastin,
    NED (PET every 3 mo)
    Currently on Avastin only

    I wanted to say thanks for
    I wanted to say thanks for posting~ This is what I am looking for in a "long term" survivor board. We need hope, that survivors really do exsist! Statistics aren't always on our side, real stories are! Thank you!
  • ron50
    ron50 Member Posts: 1,723 Member
    allmost60 said:

    Hi,
    I turned 60 on Sept 30th and figured I should change my username, but couldn't find a way to do it. Soooo...looks like I'll be "allmost 60" forever...ha! Thats ok with me...it will always remind me that I was "all most 60" the year I was diagnosed with cancer. June 16th 2010 will be forever etched in my brain.
    Love...Sue (FNHL-G2-Stg3-TypeA-Dx6/10)

    Hmmmmmmm
    Do the math on Ron 50 as in 1950-2010=********60*********:):):)Ron
  • bluerose
    bluerose Member Posts: 1,104

    Thank you, Greta - and your ACS/CSN colleagues!
    Just discovered this board - and am elated!

    I see many familiar folks on this thread. For those who don't know me yet:

    Am a Breast Cancer Survivor. Diagnosed July 2003. Surgery (lumpectomy), chemotherapy (horrific) & radiation finished March 2007. Joined the ACS BC Board about a year & a half ago - to mark my five year anniversary for completion of invasive treatment. Wanting to "give back" in another way, hoping to instill hope in others, provide support & encouragement.

    Still taking oral anti-BC meds (Arimidex). Yes, openly admitting here - I have long-term survivorship "issues"... Wow! That felt good! :-)

    Kind regards, Susan
    Christmas Girl
    because I was
    Born on Christmas Day
    (the title of my Profile Page)

    22 year plus long term survivor here. - 20 years NED and cured
    If I have posted on this board before I blame it on my chemobrain so there. lol. Nah I don't think I have posted here before, usually busy on the Emotional Issues board and long term late effects, a little here and a little there in posts.

    Yup I agree that we have our own issues as long term survivors but mostly I think cancer survivors of even just the diagnosis have more in common than not. That diagnosis isn't for the faint of heart. Long term survivors have late effects to deal with which is a whole other thing but there are side effects to issues even survivors of a year or two can experience.

    Looking forward to reading the posts in this category of CSN>

    Blessings, Bluerose
  • sbmly53
    sbmly53 Member Posts: 1,522
    Thank you so much for this very hopeful board.
    I will 'lurk' for now and be back in 4 years!

    Sue
  • Bob76
    Bob76 Member Posts: 5
    sbmly53 said:

    Thank you so much for this very hopeful board.
    I will 'lurk' for now and be back in 4 years!

    Sue

    You all make me feel old
    I am a 33 year survivor of HD stage 3a and I am 41 years old now.Is there a senior long term survivors board?HA!HA!I am new here and enjoy reading your boards.Hope to make some new friends.


    Bob
  • bluerose
    bluerose Member Posts: 1,104
    Bob76 said:

    You all make me feel old
    I am a 33 year survivor of HD stage 3a and I am 41 years old now.Is there a senior long term survivors board?HA!HA!I am new here and enjoy reading your boards.Hope to make some new friends.


    Bob

    Hey Bob
    That's one phrase that means nothing but positive things to cancer suvivors 'you make me feel old'. Don't we all just pray that we can say one day 'we are old'. Beat that nasty cancer. Old is good for us.

    All the best,
    Bluerose
  • KathiM
    KathiM Member Posts: 8,028 Member
    Bob76 said:

    You all make me feel old
    I am a 33 year survivor of HD stage 3a and I am 41 years old now.Is there a senior long term survivors board?HA!HA!I am new here and enjoy reading your boards.Hope to make some new friends.


    Bob

    Maybe older....but young at heart!!!!! (I'm 55 years young)
    WOW! 33 years!!!! that is fantastic!!!

    Hugs, Kathi
  • dubc
    dubc Member Posts: 8
    38 years this month
    I've just started posting about my childhood battle with Medulloblastoma. I'm now forty and have been cancer free. Hope everyone is doing well. I have had some long term issues to deal with from the radiation treatments I received. Hope to talk about it more.
  • Lily50
    Lily50 Member Posts: 209
    dubc said:

    38 years this month
    I've just started posting about my childhood battle with Medulloblastoma. I'm now forty and have been cancer free. Hope everyone is doing well. I have had some long term issues to deal with from the radiation treatments I received. Hope to talk about it more.

    Long Term Survivor - 5 Years
    Hi Greta and everyone who posts to this board!

    I'm Lily and I post on the Gallbladder Cancer Discussion Threads. I was feeling a little down and decided to look for a thread where I could relate to others that have issues after treatment has been completed. Reading all of your posts were quite helpful. I do have some physical and mental difficulties that I don't like to whine about. My doctors have told me that I have to find the new me and she seems to be hiding from me. I spend most of my time being a cheerleader for other gbc patients and their caregivers but as Greta stated earlier you have to have a sense of self and I feel that I have lost that. When I can count the long term survivors of gbc on one half of my hand it is time to talk to others that have survived cancer no matter what the classification is.
    I was diagnosed in 2005 with Gallbladder Cancer Stage IV at the age of 46. This cancer has a 1% survival rate. It was a two year long journey for me and I didn't participate in discussions during that time. My entire life changed in that second of being told of my diagnosis.
    I know that I am very blessed to be here every day, but sometimes I feel that I am existing and not really living. I need to be able to get to that place that eludes me. Hope and Faith has carried me through but I feel that I need something else in my life right now. When I lose someone from the board it hurts my heart for them. Takes me a couple of days to re-group and be helpful again.
    Thanks for listening.
    Take Care
    Lily
  • Marcia527
    Marcia527 Member Posts: 2,729
    Lily50 said:

    Long Term Survivor - 5 Years
    Hi Greta and everyone who posts to this board!

    I'm Lily and I post on the Gallbladder Cancer Discussion Threads. I was feeling a little down and decided to look for a thread where I could relate to others that have issues after treatment has been completed. Reading all of your posts were quite helpful. I do have some physical and mental difficulties that I don't like to whine about. My doctors have told me that I have to find the new me and she seems to be hiding from me. I spend most of my time being a cheerleader for other gbc patients and their caregivers but as Greta stated earlier you have to have a sense of self and I feel that I have lost that. When I can count the long term survivors of gbc on one half of my hand it is time to talk to others that have survived cancer no matter what the classification is.
    I was diagnosed in 2005 with Gallbladder Cancer Stage IV at the age of 46. This cancer has a 1% survival rate. It was a two year long journey for me and I didn't participate in discussions during that time. My entire life changed in that second of being told of my diagnosis.
    I know that I am very blessed to be here every day, but sometimes I feel that I am existing and not really living. I need to be able to get to that place that eludes me. Hope and Faith has carried me through but I feel that I need something else in my life right now. When I lose someone from the board it hurts my heart for them. Takes me a couple of days to re-group and be helpful again.
    Thanks for listening.
    Take Care
    Lily

    hi lily
    My DH had his gallbladder out about 4 years ago. The surgeon said it was the gallbladder from hell. But it wasn't cancerous. Sorry yours was.

    Some days I just manage to exist too but then I push myself to do something fun. Watch a comedy or just laugh at nothing. It makes me feel better. I get some strange looks at first when I laugh at nothing but they have to join in before too long. I think I may have to break out in laughter just thinking about it. lol.
  • Lily50
    Lily50 Member Posts: 209
    Marcia527 said:

    hi lily
    My DH had his gallbladder out about 4 years ago. The surgeon said it was the gallbladder from hell. But it wasn't cancerous. Sorry yours was.

    Some days I just manage to exist too but then I push myself to do something fun. Watch a comedy or just laugh at nothing. It makes me feel better. I get some strange looks at first when I laugh at nothing but they have to join in before too long. I think I may have to break out in laughter just thinking about it. lol.

    Hi Marcia
    Thanks for responding. It is nice to hear that others feel the same way that I do sometimes.

    I too try and push to do something fun but then I feel guilty about being selfish when others are experiencing such pain. I guess that is part of survivors remorse.

    I do laugh and it makes me feel better too.

    Thanks again!
    Lily
  • bluerose
    bluerose Member Posts: 1,104
    ron50 said:

    Hi Cathy
    Part of it is that a lot of us don't have any pertinent input to the original board we were on. I was on a regime of chemo that is no longer used so it is not much use telling some one in todays treatment what I did. Having said that it is really good for someone in treatment now to be able to go to a board and check out what can be achieved with a bit of luck. I guess some of the long term survivors don't have ongoing issues (hard to imagine)so it gives them somewhere to go without seeming to gloat(a term i have heard used against a long term survivor)about their survival. Cheers Ron.

    Complaints about 'GLOATING' over survivorship? Unfreakin real .
    I couldn't believe that comment about someone gloating over their survivorship, how horrific for anyone to suggest a survivor would 'gloat'. Hey maybe they were talking about me. If so 'poo on you'. lol. Hmm, that was mature. lol. Well it's true, that is just a horrible thing to say about a survivor. If someone was talking about me I could care less but if it was about anyone else I am writing this for them too and support their 'gloating', OMG that makes me so angry someone would decribe another survivor that way.

    If you survive cancer and feel like shouting it from the rooftops you should, as far as I am concerned, and relating your story to others who feel hopeless is nothing but a positive thing. Gloating over survivership - now I truly have heard it all.

    I AM A 23 YEAR SURVIVOR AND I AM OVER THE MOON ABOUT THAT, TAKE THAT, geez Louise whoever wrote that on this site should have a talking to by those who have fought the tough battle in order to even be able to 'gloat' about their survivorship. You think dealing with 200 side effects of treatments of decades ago is a fun thing? I HAVE BEEN CONSIDERED CURED - and if I want to shout it in upper case I will.

    Shame on you, whoever used that word 'gloat' in that negative way to descirbe someone who was thrilled about their survival, shame on you. This site is about hope, at least that is the way I look at it, and applauding the positive, and that is what I intend to do by supporting others instead of finding fault with those on their journies with cancer and if I can be an example, like the survivor who someone is having an issue with with their 'gloating' over their survivorship, grrrrrrrrrr makes me so mad, then I say be that example by sharing your story and your positive outcome.

    Man this ticks me off.

    Blessings,
    Bluerose
  • bluerose
    bluerose Member Posts: 1,104
    PhillieG said:

    Victim?
    Bah... It's not like I was walking down the street and got mugged!
    ;-)
    -p

    Hey Phill
    Are you talking about your developing cancer cause if you are I kind of disagree to a point with the post here, in some ways it is kind of like getting mugged.

    I mean mugging comes out of the blue without warning - so do many cancer diagnosis. Muggings often produce painful injuries - so do many cancer treatments.
    Muggings cause mental traumas for many - so does cancer.
    Muggings are brutal - so are many cancer treatments.
    Muggings leave scars - so does cancer.

    I could go on so sometimes, actually, in my not so positive days, I do kind of feel as if I have been mugged by cancer.

    Just my little humble opinion.

    All the best,

    Bluerose