pen pal

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cathy08210726
cathy08210726 Member Posts: 1
in Ovarian Cancer #1
i am searching for someone who has been told they will probably be living with their cancer for the rest of their life (if not the alternative). in most searches, i have met people who are in remission, or who have a curable cancer.
i do not have to meet someone with ovarian cancer, just someone who is fairly young (i am 45 and was diagnosed at 43) and been told that their cancer will probably never go away.
this has been very hard for me to accept.
also, i would love to find out about fundraisers for cancer patients or families.
ultimately, i would like to be a penpal to as many people as possible, attend support groups with people who have cancer and go to and give as much as i can financially, emotionally and of myself to each one.
thank you

Comments

  • kikz
    kikz Member Posts: 1,345 Member
    #2
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    I am currently in remission.
    My surgeon told that if the cancer does not return, I am considered cured. But if it comes back once; it will never go away. At that point it is treatable, not curable. I was pronounced in remission in November. So now the wait. I think about the possibility of "it" coming back but try very hard not to dwell on it or let it get me down. Living one day at a time is so cliche but the only way to handle this situation.

    Karen
  • joan60
    joan60 Member Posts: 89
    #3
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    chronic cancer
    I was diagnosed at 50 had a total hysterectomy and debulking. My doctor said she got 98% of the cancer. (1 year ago I had surgery), I started chemo 2 weeks later. I had 18 weeks of chemo through the IP port and through the chest port. I was in remission for 6 Months before ca-125 started going up, she said I had plastin resistance cancer cells and because it came back so soon she said we will be fighting this for a long time and changing chemo as we go. Instead of calling it a reacurrance they now refer it as a chronic cancer (lucky me). I'm not good about writing but would like to keep in touch and compare notes as we deal with this ugly beast . It also was really hard to hear that I will be dealing with this for years to come, my mind starts to think I should get my ducks in a row a be prepared for the unacceptable. My husband also is having a hard time with this, he tries to do what he can for me, but in the back of his mind he can't help me to get read of the beast and it hurts him knowing he can't make it leave me!!!
    I know how important this sight is as it gives me a lot positiveness and helps me emotionally!!!!
    Looking forward to the future as best as I can.
    Joan
  • azgrandma
    azgrandma Member Posts: 609 Member
    #4
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    joan60 said:

    chronic cancer
    I was diagnosed at 50 had a total hysterectomy and debulking. My doctor said she got 98% of the cancer. (1 year ago I had surgery), I started chemo 2 weeks later. I had 18 weeks of chemo through the IP port and through the chest port. I was in remission for 6 Months before ca-125 started going up, she said I had plastin resistance cancer cells and because it came back so soon she said we will be fighting this for a long time and changing chemo as we go. Instead of calling it a reacurrance they now refer it as a chronic cancer (lucky me). I'm not good about writing but would like to keep in touch and compare notes as we deal with this ugly beast . It also was really hard to hear that I will be dealing with this for years to come, my mind starts to think I should get my ducks in a row a be prepared for the unacceptable. My husband also is having a hard time with this, he tries to do what he can for me, but in the back of his mind he can't help me to get read of the beast and it hurts him knowing he can't make it leave me!!!
    I know how important this sight is as it gives me a lot positiveness and helps me emotionally!!!!
    Looking forward to the future as best as I can.
    Joan

    never heard it referred to this way
    i have never heard it reffered to this way. I was told we are in remission now. God Bless you
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #5
    Options
    joan60 said:

    chronic cancer
    I was diagnosed at 50 had a total hysterectomy and debulking. My doctor said she got 98% of the cancer. (1 year ago I had surgery), I started chemo 2 weeks later. I had 18 weeks of chemo through the IP port and through the chest port. I was in remission for 6 Months before ca-125 started going up, she said I had plastin resistance cancer cells and because it came back so soon she said we will be fighting this for a long time and changing chemo as we go. Instead of calling it a reacurrance they now refer it as a chronic cancer (lucky me). I'm not good about writing but would like to keep in touch and compare notes as we deal with this ugly beast . It also was really hard to hear that I will be dealing with this for years to come, my mind starts to think I should get my ducks in a row a be prepared for the unacceptable. My husband also is having a hard time with this, he tries to do what he can for me, but in the back of his mind he can't help me to get read of the beast and it hurts him knowing he can't make it leave me!!!
    I know how important this sight is as it gives me a lot positiveness and helps me emotionally!!!!
    Looking forward to the future as best as I can.
    Joan

    Hi Karen and Joan
    I too have an "incurrable cancer" and was tolds this at diagnosis. It was hard to be told you have a rare cancer (Primary Peritoneal Cancer) but even harder to be told it is incurrable. I was even told some very harsh statistics (which I can't rememeber now) and I left thinking I probably only have 12 - 18 months left. I now know my doctor was being very down to earth and didn't want to give me false hope ..... but he offered me no hope either only that my age (I was 49) and fitness & good health(I was a runner and eat a healthy diet) was very encoraging and would help me fight it.

    It has now been 14 months since I was diagnosed and although I am on my second round of chemo (I had a 7 month remission after my first chemo)I have reached a kind of peace and acceptance. I do not consider myself TERMINAL (I did for a long time) but now I know I can live as long as my body can tolerate chemo I refer to myself as having a CHRONIC CANCER.

    My life has completely turned upside down as I cannot run for very far now due to being on chemo and losing my fitness but I do go up to my "running club" and do my own thing. I have also returned to work - part time and this has given me my independance and purpose.

    I try to keep as upbeat as I can to keep my children and father from getting upset and it works and has even rubbed off on myself.

    I am a great believer in fate and what will be will be and this helps me cope day in day out. My Mum died 2years ago and I know she is looking after me which stops me being too scared.

    Oh enough about me it is nice to read other people's stories. Keep posting.
    Tina xx
  • kikz
    kikz Member Posts: 1,345 Member
    #6
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    Tina Brown said:

    Hi Karen and Joan
    I too have an "incurrable cancer" and was tolds this at diagnosis. It was hard to be told you have a rare cancer (Primary Peritoneal Cancer) but even harder to be told it is incurrable. I was even told some very harsh statistics (which I can't rememeber now) and I left thinking I probably only have 12 - 18 months left. I now know my doctor was being very down to earth and didn't want to give me false hope ..... but he offered me no hope either only that my age (I was 49) and fitness & good health(I was a runner and eat a healthy diet) was very encoraging and would help me fight it.

    It has now been 14 months since I was diagnosed and although I am on my second round of chemo (I had a 7 month remission after my first chemo)I have reached a kind of peace and acceptance. I do not consider myself TERMINAL (I did for a long time) but now I know I can live as long as my body can tolerate chemo I refer to myself as having a CHRONIC CANCER.

    My life has completely turned upside down as I cannot run for very far now due to being on chemo and losing my fitness but I do go up to my "running club" and do my own thing. I have also returned to work - part time and this has given me my independance and purpose.

    I try to keep as upbeat as I can to keep my children and father from getting upset and it works and has even rubbed off on myself.

    I am a great believer in fate and what will be will be and this helps me cope day in day out. My Mum died 2years ago and I know she is looking after me which stops me being too scared.

    Oh enough about me it is nice to read other people's stories. Keep posting.
    Tina xx

    Your story is
    uplifting to me. I admire you for deciding to be upbeat and do the things you were doing before your diagnosis. I believe that along with the horrible diagnosis we are given other things. I see life more clearly now. I know what is important to me. I try to make each day count even if I am just puttering around the house. This "take one day at a time thing" is something everyone should live by but WE have a better understanding of just how crucial that is. No one knows how much time they have on this Earth but WE have been given a wake-up call. Good luck in your continued fight.

    Karen
  • LaundryQueen
    LaundryQueen Member Posts: 676
    #7
    Options
    Tina Brown said:

    Hi Karen and Joan
    I too have an "incurrable cancer" and was tolds this at diagnosis. It was hard to be told you have a rare cancer (Primary Peritoneal Cancer) but even harder to be told it is incurrable. I was even told some very harsh statistics (which I can't rememeber now) and I left thinking I probably only have 12 - 18 months left. I now know my doctor was being very down to earth and didn't want to give me false hope ..... but he offered me no hope either only that my age (I was 49) and fitness & good health(I was a runner and eat a healthy diet) was very encoraging and would help me fight it.

    It has now been 14 months since I was diagnosed and although I am on my second round of chemo (I had a 7 month remission after my first chemo)I have reached a kind of peace and acceptance. I do not consider myself TERMINAL (I did for a long time) but now I know I can live as long as my body can tolerate chemo I refer to myself as having a CHRONIC CANCER.

    My life has completely turned upside down as I cannot run for very far now due to being on chemo and losing my fitness but I do go up to my "running club" and do my own thing. I have also returned to work - part time and this has given me my independance and purpose.

    I try to keep as upbeat as I can to keep my children and father from getting upset and it works and has even rubbed off on myself.

    I am a great believer in fate and what will be will be and this helps me cope day in day out. My Mum died 2years ago and I know she is looking after me which stops me being too scared.

    Oh enough about me it is nice to read other people's stories. Keep posting.
    Tina xx

    Chronic cases
    Joan, Tina & any other chronic cases

    I like your stories. Stay strong & amaze your oncologists when they realize they were wrong. I know a woman who outlived her oncologist!

    No one calls it "terminal diabetes" even though diabetes is an incurable condition.

    New treatments are on the horizon.

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