I don't know how to support my mom

SangerC
SangerC Member Posts: 11
edited March 2014 in Ovarian Cancer #1
My mom is losing her second battle with ovarian cancer. Doctors have told her that she has, at best, a few months left. Her CA125 levels keep going up, despite aggressive chemo. I don't know what to say to her... She's scared and she keeps telling me that she's not ready to leave the earth.
I have no idea what words to choose. I just found this website and I was hoping I could find some guidance...

Comments

  • survivingovca
    survivingovca Member Posts: 23
    First - I am so sorry that
    First - I am so sorry that your mom and your family are going through this. It stinks, plain and simple.

    Has your mom received more than one opinion from a gynecologic oncologist? I had two gyne/oncs tell me that I would be on chemo the rest of my (very short) life. The third doc found options for me, and I now have no signs of cancer, and have had no treatment for a year. For me, there was hope and it just took some time and research to find it (I entered a clinical trial). Doctors aren't always right about these things. It sounds like your mom wants to fight. A different doctor may be able to give her the options to do just that.

    If you believe she really is approaching the end - perhaps you could talk to some hospice workers, or read books written by hospice workers. They have an understanding of patient needs that come from years of experience. You could probably aid her in getting 'ready', maybe by going through pictures or taking care of some arrangements for her.

    I'm so sorry you are dealing with this, and wish I had some better advice.
  • anicca
    anicca Member Posts: 334 Member
    Not good with this, but...
    I am really not good with this kind of thing, but I have two grown daughters and am also not ready to leave. If it did come to that, which of course, it will, someday, I would want my daughters near me and would want to feel their love for me. When I was in surgery, my daughters went to the gift shop and bought me a super soft cuddly frog, and a lovely green bead necklace, which showed me they were thinking of me. I'm not suggesting that you buy your mom things, but just do whatever she will recognize as caring actions. I would also want to feel that my daughters would be OK without me. I know the pain of losing a mom, two times over, so I know how awful it will be for you when the inevitable happens, but if your mom believed that you will be OK, it could be a great comfort to her. You could let her know that she has prepared you well for life and will live on in your heart. If your mom is religious, that can also be a great source of comfort and may help her come to terms with her plight.
  • SangerC
    SangerC Member Posts: 11

    First - I am so sorry that
    First - I am so sorry that your mom and your family are going through this. It stinks, plain and simple.

    Has your mom received more than one opinion from a gynecologic oncologist? I had two gyne/oncs tell me that I would be on chemo the rest of my (very short) life. The third doc found options for me, and I now have no signs of cancer, and have had no treatment for a year. For me, there was hope and it just took some time and research to find it (I entered a clinical trial). Doctors aren't always right about these things. It sounds like your mom wants to fight. A different doctor may be able to give her the options to do just that.

    If you believe she really is approaching the end - perhaps you could talk to some hospice workers, or read books written by hospice workers. They have an understanding of patient needs that come from years of experience. You could probably aid her in getting 'ready', maybe by going through pictures or taking care of some arrangements for her.

    I'm so sorry you are dealing with this, and wish I had some better advice.

    Thank you so much for your
    Thank you so much for your response. A huge congratulations to being cancer free :)

    Over the past two + years she has been working with a few different doctors and surgeons - all of them are excellent but her CA125 levels keep raising and her blood count keeps dwindling. When she was diagnosed the last time, they said they couldn't operate because there were too many tumors. I just can't understand not operating.... I get angry that the doctors don't treat the news of her failing health as upsetting as I do. They just walk in the room and read off her numbers.

    She's a very proud woman and she keeps to herself a lot. She lives alone and in a different state. I offered to withdraw from school to be with her and she didn't want that. She's done so much for me and it's excruciating to not be able to help her now.

    I can't tell you how much I appreciate your response.
  • SangerC
    SangerC Member Posts: 11
    anicca said:

    Not good with this, but...
    I am really not good with this kind of thing, but I have two grown daughters and am also not ready to leave. If it did come to that, which of course, it will, someday, I would want my daughters near me and would want to feel their love for me. When I was in surgery, my daughters went to the gift shop and bought me a super soft cuddly frog, and a lovely green bead necklace, which showed me they were thinking of me. I'm not suggesting that you buy your mom things, but just do whatever she will recognize as caring actions. I would also want to feel that my daughters would be OK without me. I know the pain of losing a mom, two times over, so I know how awful it will be for you when the inevitable happens, but if your mom believed that you will be OK, it could be a great comfort to her. You could let her know that she has prepared you well for life and will live on in your heart. If your mom is religious, that can also be a great source of comfort and may help her come to terms with her plight.

    You are so right
    I appreciate your advice. I don't know how to relate to her as a mother.
    She reminds me of things from my childhood every day. She keeps saying that she hopes I remember things like trips, clothing, toys, holidays... and I can tell she's concerned for me. I'm in my early 20s... How could a daughter let her mom know that she's listened to all of her stories and life lessons? That she'll be strong when she's alone?
  • SangerC said:

    You are so right
    I appreciate your advice. I don't know how to relate to her as a mother.
    She reminds me of things from my childhood every day. She keeps saying that she hopes I remember things like trips, clothing, toys, holidays... and I can tell she's concerned for me. I'm in my early 20s... How could a daughter let her mom know that she's listened to all of her stories and life lessons? That she'll be strong when she's alone?

    :(
    Your in a tough place right now, I fear I will be there soon to , but I am trying to remain in as positive as I can . I think the advice that has been given is great , reassure her that you will be ok , that she has brought you up to be a well rounded adult, who can fend for themselves and she must not worry for you. Talk about the days when you were young, reminisce about your childhood , it is a lovely thing to do , and will bring a smile to your mums face.
    Peace to you and your mum xxx

    Liz.
  • Lisa13Q
    Lisa13Q Member Posts: 677
    Hello
    My mother was diagnosed 7/09 with OVCA...since that time, she has had her debulking, and who knows how many chemos. She never got a break. After the surgery and 6 brutal big gun chemos, they saw 3 spots on her CT scan, but said go take a break, we'll watch them, could just be scar tissue....Nooooo it was cancer. But she couldn't have had any more chemo for those 3 months anyway. During this time, we just hang out. Sometimes we talk about the cancer, sometimes we gossip, sometimes we cry, sometimes we laugh. we have mended fences...it's been fun....we were in a trial and had to take a survey every week. One week, we wrote all over the survey, "we hate cancer and we refuse to answer your questions"....I was just her daughter. I got her tylenol when she needed it, dark milano cookies, and and re-made countless meals because they were wrong....I stayed a week in the hospital and slept on a sofa chair (I called it the railroad track chair) while she monitored my diet and wouldn't let me eat anything bad for me or over 1200 calories....what else can I say? It sucks, it's also an honor....it sucks....it's amazing, it's exhausting, and I will never forget all our time together and whatever time she has left going forward.........it feels like being a parent in reverse....
  • clamryn
    clamryn Member Posts: 508
    Live her life
    Is she able to get out and do things? That is what I try to do. I don't know how much time I have left but if there is something I really want to do, I force myself.
    I am in the process of going through all of my pictures. I am putting them on a CD and then I am going to tape my voice and leave a message on each one. I have three children and I am making one for each of them.
    My children all have special talents and I want to make sure that they know that. I have written down things that I want to remember to tell them. Going over some stories that I want to remind them that they made me proud and happy.

    You know I have two friends that recently passed away. Of the three of us, everyone would have probably thought I would have been the first to go. But I am still here.

    Lots of prayers for you and your mom.

    Linda
  • SangerC
    SangerC Member Posts: 11

    :(
    Your in a tough place right now, I fear I will be there soon to , but I am trying to remain in as positive as I can . I think the advice that has been given is great , reassure her that you will be ok , that she has brought you up to be a well rounded adult, who can fend for themselves and she must not worry for you. Talk about the days when you were young, reminisce about your childhood , it is a lovely thing to do , and will bring a smile to your mums face.
    Peace to you and your mum xxx

    Liz.

    Liz -
    Thank you for the

    Liz -

    Thank you for the advice on how to brighten my mom's spirits. She has already spent so many years giving me invaluable life lessons. Sometimes I lose sight of how much she values time spent with her only child. I needed your perspective.

    Stay positive :)
  • SangerC
    SangerC Member Posts: 11
    Lisa13Q said:

    Hello
    My mother was diagnosed 7/09 with OVCA...since that time, she has had her debulking, and who knows how many chemos. She never got a break. After the surgery and 6 brutal big gun chemos, they saw 3 spots on her CT scan, but said go take a break, we'll watch them, could just be scar tissue....Nooooo it was cancer. But she couldn't have had any more chemo for those 3 months anyway. During this time, we just hang out. Sometimes we talk about the cancer, sometimes we gossip, sometimes we cry, sometimes we laugh. we have mended fences...it's been fun....we were in a trial and had to take a survey every week. One week, we wrote all over the survey, "we hate cancer and we refuse to answer your questions"....I was just her daughter. I got her tylenol when she needed it, dark milano cookies, and and re-made countless meals because they were wrong....I stayed a week in the hospital and slept on a sofa chair (I called it the railroad track chair) while she monitored my diet and wouldn't let me eat anything bad for me or over 1200 calories....what else can I say? It sucks, it's also an honor....it sucks....it's amazing, it's exhausting, and I will never forget all our time together and whatever time she has left going forward.........it feels like being a parent in reverse....

    Thank you for sharing...
    Our mom's stories sound so similar.... I'm sorry your mom has been going through this for so long. I can't even imagine how exhausting it must be.
    My mom has been going through this so long it's a way of life for her and that is impossibly hard to swallow.
    My mom likes to weigh in on my clothes - she just can't understand how she raised me with such fashion sense and I insist on dressing "like that." :) (Like that includes jeans and a sweater.. lol). Oddly enough, my mom takes great pleasure in overfeeding me with rich foods.
    I feel awful when I cry in front of her. I don't want her to think that I'm falling apart.
    I can't stand seeing how tired she is.
    I don't want to lose her - I haven't had enough "life" with her yet.
  • SangerC
    SangerC Member Posts: 11
    clamryn said:

    Live her life
    Is she able to get out and do things? That is what I try to do. I don't know how much time I have left but if there is something I really want to do, I force myself.
    I am in the process of going through all of my pictures. I am putting them on a CD and then I am going to tape my voice and leave a message on each one. I have three children and I am making one for each of them.
    My children all have special talents and I want to make sure that they know that. I have written down things that I want to remember to tell them. Going over some stories that I want to remind them that they made me proud and happy.

    You know I have two friends that recently passed away. Of the three of us, everyone would have probably thought I would have been the first to go. But I am still here.

    Lots of prayers for you and your mom.

    Linda

    Your message brought me to
    Your message brought me to tears. What a special gift to give to your children.

    She keeps busy even though she has a difficult time doing all of the active things she used to.
    My mom sat me down and went through all of our family albums over Christmas and it was so special. She spoke about "her little girl" as if I were a different person, forever tiny.
    My mother is incredibly strong and determined - which makes seeing her so afraid even more difficult to deal with. This may sound ridiculous but, this is just so unfair. She's too young to miss out on all of the things she wants to do. I'm just angry.

    I can't tell you how amazing it is to hear from other people. Hearing that you are still getting out to do things gives me hope. Knowing that people are beating the odds every day makes me focus on the time my Mom and I have, not the time we won't.

    I will keep you and your family in my thoughts.
  • eward
    eward Member Posts: 210
    in tears
    I am in tears reading the initial message and also the other messages of hope and support. This is such a difficult journey. My mom is nearing 2 years after diagnosis of stage 4 Primary Peritoneal Cancer, which is considered Ovarian Cancer. I hear all of this and I identify with it. My mom's numbers have been hovering in the 2000-3000 range, a little up and a little down from test to test. She feels pretty good, which means the world to me.

    If it is any consolation, a friend of mine, with breast cancer and mets to her liver and bones, was able to enjoy life for 7 additional years after she was given "months to live" by her drs because she went to the Block Cancer Center in Evanston, Illinois. Perhaps your mother could get other opinions on alternative treatments and/or nutritional care?

    No matter what, cancer sucks.
    xo
    Eileen
  • eward
    eward Member Posts: 210
    My mom is not ready to leave
    My mom is not ready to leave this earth either. Sending love,Eileen
  • lenjam
    lenjam Member Posts: 51
    eward said:

    My mom is not ready to leave
    My mom is not ready to leave this earth either. Sending love,Eileen

    Cancer Sucks
    Cancer sucks. I too have a mom fighting this horrible disease. Diagnosed 6/10. I find myself in the same position when talking to her, not sure what to say and what not to say. I know my mom's biggest fear is leaving us kids and her grandchildren. Others have given great advice that I also will use when the time comes. I think the best advice is that she feel that you will be okay. If she can get out and do things do whatever it is she wants to do and cherish every moment. There's great people here with great advice. Prayers sent your way!
  • kayandok
    kayandok Member Posts: 1,202 Member
    I don't have a mom
    with cancer, but I have three kids and have thought a lot about what it would be like to loose a mom. I feel guilty that I have not written any notes, letters or made videos. Just thinking about that makes me want to ball. I hope I will be strong enough one day to do that, because I really want them to have some memories of me. When I do have to face my last days (it will more than likely happen one day, I hope in the distant future, though) I want to be at home (not in the hospital) and have my family around me. I think that is what most moms would want.

    I had a very close friend and neighbor that died last December. We live in Japan and her only son was in college, in Canada. He took a quarter off and spent the last few months with her here and then followed her to Canada when she went into hospice care. Initially, she told him NOT to drop out of school. But, he knew that she was only saying that because she didn't want to put him through pain and discomfort. I Skyped wih her almost every day and she lit up when she talked about her son, and was ecstatic to have him at her beck and call. As it turned out, her husband was able to take off from work too, and the whole family was together her last few months. I know that was a wonderful gift for her. Everyone is different, and has uique situaitons, but when I read your post, I couldn't help but think about my friend, and wanted to share that with you.

    You are a wonderful daughter to reach out here to get advice. Your mom is truly blessed to have you!

    Praying for you today that you will have wisdom to know what to do and then courage to do it,

    kathleen❤
  • SangerC
    SangerC Member Posts: 11
    eward said:

    in tears
    I am in tears reading the initial message and also the other messages of hope and support. This is such a difficult journey. My mom is nearing 2 years after diagnosis of stage 4 Primary Peritoneal Cancer, which is considered Ovarian Cancer. I hear all of this and I identify with it. My mom's numbers have been hovering in the 2000-3000 range, a little up and a little down from test to test. She feels pretty good, which means the world to me.

    If it is any consolation, a friend of mine, with breast cancer and mets to her liver and bones, was able to enjoy life for 7 additional years after she was given "months to live" by her drs because she went to the Block Cancer Center in Evanston, Illinois. Perhaps your mother could get other opinions on alternative treatments and/or nutritional care?

    No matter what, cancer sucks.
    xo
    Eileen

    Cancer does suck
    Eileen -
    She was given "months to live" last summer. But in my heart, I genuinely believe that she has longer than that. She's health conscious and she WANTS to be here. That has to mean something. I just worry about her mental state - if she resigns to only having a few months...I worry that her body will follow her mind.

    Thanks for the note about 7 additional years - that really brightens my spirits. You NEVER know. My mom is a person -NOT a test result or an average.

    :)

    My thoughts are with you and your mom.
  • SangerC
    SangerC Member Posts: 11
    kayandok said:

    I don't have a mom
    with cancer, but I have three kids and have thought a lot about what it would be like to loose a mom. I feel guilty that I have not written any notes, letters or made videos. Just thinking about that makes me want to ball. I hope I will be strong enough one day to do that, because I really want them to have some memories of me. When I do have to face my last days (it will more than likely happen one day, I hope in the distant future, though) I want to be at home (not in the hospital) and have my family around me. I think that is what most moms would want.

    I had a very close friend and neighbor that died last December. We live in Japan and her only son was in college, in Canada. He took a quarter off and spent the last few months with her here and then followed her to Canada when she went into hospice care. Initially, she told him NOT to drop out of school. But, he knew that she was only saying that because she didn't want to put him through pain and discomfort. I Skyped wih her almost every day and she lit up when she talked about her son, and was ecstatic to have him at her beck and call. As it turned out, her husband was able to take off from work too, and the whole family was together her last few months. I know that was a wonderful gift for her. Everyone is different, and has uique situaitons, but when I read your post, I couldn't help but think about my friend, and wanted to share that with you.

    You are a wonderful daughter to reach out here to get advice. Your mom is truly blessed to have you!

    Praying for you today that you will have wisdom to know what to do and then courage to do it,

    kathleen❤

    Thank you
    Kathleen -

    Thank you for sharing with me. I really appreciate your insight and the story about our friend.

    I am in a difficult place - I know my mom wants to spend time with me but I worry she would be disappointed / guilty / furious if I put professional school on pause. She has always pushed me and believed in me. She often mentions how she wants to see me graduate. I know she loves hearing about how well I'm doing, etc.

    But you message did really make me think about how much of an effort I need to make to see her, be with her, etc.

    Thank you for letting me get this out & advising me.
  • SangerC
    SangerC Member Posts: 11
    kayandok said:

    I don't have a mom
    with cancer, but I have three kids and have thought a lot about what it would be like to loose a mom. I feel guilty that I have not written any notes, letters or made videos. Just thinking about that makes me want to ball. I hope I will be strong enough one day to do that, because I really want them to have some memories of me. When I do have to face my last days (it will more than likely happen one day, I hope in the distant future, though) I want to be at home (not in the hospital) and have my family around me. I think that is what most moms would want.

    I had a very close friend and neighbor that died last December. We live in Japan and her only son was in college, in Canada. He took a quarter off and spent the last few months with her here and then followed her to Canada when she went into hospice care. Initially, she told him NOT to drop out of school. But, he knew that she was only saying that because she didn't want to put him through pain and discomfort. I Skyped wih her almost every day and she lit up when she talked about her son, and was ecstatic to have him at her beck and call. As it turned out, her husband was able to take off from work too, and the whole family was together her last few months. I know that was a wonderful gift for her. Everyone is different, and has uique situaitons, but when I read your post, I couldn't help but think about my friend, and wanted to share that with you.

    You are a wonderful daughter to reach out here to get advice. Your mom is truly blessed to have you!

    Praying for you today that you will have wisdom to know what to do and then courage to do it,

    kathleen❤

    and by the way -
    Best wishes to you and your family!
  • anicca
    anicca Member Posts: 334 Member
    SangerC said:

    Your message brought me to
    Your message brought me to tears. What a special gift to give to your children.

    She keeps busy even though she has a difficult time doing all of the active things she used to.
    My mom sat me down and went through all of our family albums over Christmas and it was so special. She spoke about "her little girl" as if I were a different person, forever tiny.
    My mother is incredibly strong and determined - which makes seeing her so afraid even more difficult to deal with. This may sound ridiculous but, this is just so unfair. She's too young to miss out on all of the things she wants to do. I'm just angry.

    I can't tell you how amazing it is to hear from other people. Hearing that you are still getting out to do things gives me hope. Knowing that people are beating the odds every day makes me focus on the time my Mom and I have, not the time we won't.

    I will keep you and your family in my thoughts.

    Of course it's unfair!
    We have only ourselves to look to for fairness. Nature does not care. My birth mother died of breast cancer at the age of 41, when I was just 4. She was ill for 14 months. They only had surgery and crude radiation in the 1950's. It wasn't fair to her or my father or me or my brother. It just was. We are lucky these days that we do most often have more time than that, and that the pace of research has quickened, so there may be new options just over the horizon. Your mother is strong and determined. She has already outlived one "prediction," and no one can say she won't continue on for many years to come. Meanwhile, this is really silly, but if you could manage to dress the way your mom would like you to, just a few times, I bet she would be tickled pink. After I left for college, I only got to go home briefly once a year, so I made a point of trying to please my mom with all sorts of things that I knew she would like, though I didn't.
  • Barbara53
    Barbara53 Member Posts: 652
    a regret-free life
    My mom is much older than yours, just turned 80, and she’s been fighting for two years and is out of options. I can’t tell you what to do, but I would look at possibilities. Is it possible to take a couple of courses via internet to stay in the academic loop, and still be there for your mother? I’m my mother’s only daughter, and my business and personal life are on hold (within limits) because she needs me. My brothers and her close friends are part of the team, but I’m the one she wants. Free up whatever time you can. Set yourself up for a regret-free life.

    By the way, many many people out there have been in your shoes. They want to help you. Let them, it helps them heal.