Afraid for my Mom---she is in ICU and everyday is more bad news
i m feeling overwhelmed. I requested the palliative care team to come and meet with our family and extend some support. Since my arrival my Mom has medically gotten much worse. I'm scared and losing hope. She thought she was going home after a week at the hospital max. Her home looks all ready for her to pop back in and continue her life. I think many things are changed forever. I can just feel it.
Would love support from others who have been in these shoes. My mother is 60 and I am 40 with two children ages 7 and 8.
Comments
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I am sorry you and your mom
I am sorry you and your mom are going through so much. I hope you can get some good news soon. It is so hard to see a loved one in pain and feel you cannot do much to help. I am 62 and dx with 3c cancer. My 86 year-old mother has been taking care of me when I always thought it would be the other way around. Ovarian cancer is a daunting disease. Be strong for your mom. I am so scared a lot of the time and feel I have to hide it from my mom and my son but I really wish I could open up to them more. Give that gift to your mom. Let her lean on you if she needs to. You will both be in my prayers.
Karen0 -
Mom
SO sorry to hear about your mom. I feel like I am reading my own story when I read yours. I am 40 with a 4 year old, mom is 67 with a birthday on Sept 3rd. Diagnosed the end of June. Mom had surgery to remove ovaries, tubes and omentum. Told she's be in the hosp for 3 - 5 days, which turned out to be 10. Came home for 3 and back in again for another surgery and 4 more days in the hospital. She's been home now for a week and is in terrible pain from tubes they put in so they can drain the fluid in her plueral cavity, every day. Which she screams out in pain, while they are doing it.
I'm at a total loss as to what to say. Everything has been a struggle since this diagnosis. We've done everything the gyn/onc has said and the outcomes have not been what we were told. Mom thought she'd have surgery, go home, get chemo and live. Now, I think after everything she's been through she doesn't even want to try the chemo.
It's a horrible disease for everyone. I can't imagine how she feels and I feel so helpless to help her. I want her to live, to be a grandmother to my child, who loves her so much.
I just don't think she wants it.
Try to keep hope. I know it's the hardest thing to do and I struggle everyday with it myself.0 -
I went through something
I went through something similar with my mother. The only thing I can tell you is to stay strong. If our mothers can be strong enough to endure this pain why can't we do the same. And belive me just the fact that she has you by her side means the world to her and brings her peace. Remember to stay positive and keep the hope, things will get better. Good luck & God Bless0 -
things can turn around
Wendy and Len, I've been looking after my mother (3c/4) for a year and a half, and participating in these boards all the while. Though your mothers' situations sound dire, I have seen some amazing turnarounds, so don't give up hope. My mother looked so terrible after her surgery that frankly, we thought she was a goner, but NO NO NO! She made it through chemo, had a 5 month remission, and is now back on chemo again, but she's still enjoying her life. Hope both of your mothers do as well. In addition to this forum, the caregivers forum can be a tremendous resource.0 -
sorry
I am terribly sorry to hear this story. My mom was dx at age 63 in April of 2009. She was terribly short of breath, doctors were missing what was going on for at least a week of mom's complaints of shortness of breath, finally she requested that she be put in the hospital. It took almost a week for them to determine stage 4 primary peritoneal cancer(which is treated like ovarian cancer). Cancerous fluid in pleural space. She had a tremendous surgeon who was able to get 95% of the cancer out. After mom's first 8 rounds of chemo last year, she had a 3 month break from chemo and was right back in chemo. She had a rough spring and summer with the pleural fluid coming back and she had to have fluid drained many times. Now she has a drain in place that a nurse or my dad can drain weekly. She is much more comfortable now that she is not getting short of breath.
Keep your hope alive. This is super-overwhelming. I, too, am 41 with young children who are 4 and 7. I want to do so much for my mom, but there are limits since I have a young family to take care of. Make sure your mom has a top gyno-oncologist. I am in the Chicago area and could give you suggestions for Docs in this area. I don't know where you are located.
xo
Eileen0 -
More bad newseward said:sorry
I am terribly sorry to hear this story. My mom was dx at age 63 in April of 2009. She was terribly short of breath, doctors were missing what was going on for at least a week of mom's complaints of shortness of breath, finally she requested that she be put in the hospital. It took almost a week for them to determine stage 4 primary peritoneal cancer(which is treated like ovarian cancer). Cancerous fluid in pleural space. She had a tremendous surgeon who was able to get 95% of the cancer out. After mom's first 8 rounds of chemo last year, she had a 3 month break from chemo and was right back in chemo. She had a rough spring and summer with the pleural fluid coming back and she had to have fluid drained many times. Now she has a drain in place that a nurse or my dad can drain weekly. She is much more comfortable now that she is not getting short of breath.
Keep your hope alive. This is super-overwhelming. I, too, am 41 with young children who are 4 and 7. I want to do so much for my mom, but there are limits since I have a young family to take care of. Make sure your mom has a top gyno-oncologist. I am in the Chicago area and could give you suggestions for Docs in this area. I don't know where you are located.
xo
Eileen
I'm at the hospital. She has both bacterial and fungal infections. Still spiking fevers. They have called a cardiothoracic surgeon to consult for chest tubes. Just crazy. I can't even imagine another surgery while she's still on the vent. I'm perplexed.
Wendy0 -
I just got a call from thewendybill said:More bad news
I'm at the hospital. She has both bacterial and fungal infections. Still spiking fevers. They have called a cardiothoracic surgeon to consult for chest tubes. Just crazy. I can't even imagine another surgery while she's still on the vent. I'm perplexed.
Wendy
I just got a call from the hospital and my mom just had a seizure that was 10 minutes long. She is not getting any breaks. I'm not sure what to think. This is a horrible disease. I wish I had good news to report.0 -
Dear Wendywendybill said:I just got a call from the
I just got a call from the hospital and my mom just had a seizure that was 10 minutes long. She is not getting any breaks. I'm not sure what to think. This is a horrible disease. I wish I had good news to report.
I am so sorry to hear about your mother being so ill. I am glad that the medical team is keeping you apprised of her status, but I am wondering what they recommend for you to do. Does it make sense for you to be at the hospital with her? Or should you stay away? It sounds like they drop these bombshells of information on you over the phone and then you have to deal with it without a lot of help/support/input/feedback. That's quite a challenge. Who is helping her make medical decisions at the current time? Do you think it would be more helpful for you and her to be there? I think it might be really important right now to call on your support system and the medical staff to inform you of the implications of all this and what steps you should be taking...sounds very overwhelming and I know when I am in that situation with my mother, I just ask...."what should I be doing? Is there anything I can do? What does this mean for her health? Usually the onc gives me some very specific actions and great advice. It's tough to watch our mother's go through this, but as Barbara53 said, I have been amazed at what my mother and so many women on the board have made it through....please keep us posted. Special prayers to you in NC tonight. Lisa0 -
Praying for your Mom
Oh Wendy, I wished I was there to be with you. It is so hard. I am 62 and have ovarian cancer for the 3rd time. I have seen the look in my daughter's eyes when we go to the doctor. It is all so overwhelming. I am praying for you and your mom. I have taught my daughter to live life to the fullest every day and that is what you should do. Try to find a story that you and your mom share that was funny. Laughter has brought me a long way. Even if I am in pain... it helps. We are all with you Wendy. Praying every day.0 -
Wishing you a turn aroundwendybill said:I just got a call from the
I just got a call from the hospital and my mom just had a seizure that was 10 minutes long. She is not getting any breaks. I'm not sure what to think. This is a horrible disease. I wish I had good news to report.
I was hoping to come on and find good news from you about your mom.
It's such a helpless feeling not being able to do anything for them and not knowing what the right course of treatment is. I so feel your pain. It just plain SUCKS! My mom had the chest tubes put in and they helped her to be able to breathe easier. Not sure why if she's on a vent though that your mom needs them. I wish I would have went into medicine so I could make the more informed choices and feel confident about them. We have to trust in the doctors and that to me is a scary thing. I'm trusting she has great doctors fighting for her and keeping you informed every step of the way, which is never easy. As others have said, try your best to stay strong and positive (easier said than done). Right now I feel faith is the only we have to hang onto. I'm grabbing it with all my might.
I will pray for your mom and your family.0 -
it will get betterclamryn said:Praying for your Mom
Oh Wendy, I wished I was there to be with you. It is so hard. I am 62 and have ovarian cancer for the 3rd time. I have seen the look in my daughter's eyes when we go to the doctor. It is all so overwhelming. I am praying for you and your mom. I have taught my daughter to live life to the fullest every day and that is what you should do. Try to find a story that you and your mom share that was funny. Laughter has brought me a long way. Even if I am in pain... it helps. We are all with you Wendy. Praying every day.
Hi Wendy
i was stage 3c and things looked very bad for me for awhile, but with God by my side, things started to turn around. Just reach out and ask him to help you, he is there and will help you.
This disase is terrible. I will pray for all of you
Love Lynda0 -
Thank you for all theazgrandma said:it will get better
Hi Wendy
i was stage 3c and things looked very bad for me for awhile, but with God by my side, things started to turn around. Just reach out and ask him to help you, he is there and will help you.
This disase is terrible. I will pray for all of you
Love Lynda
Thank you for all the thoughtful replies. It has been helpful to hear from people that "know". My mom is still in ICU on the ventilator. I'm getting most of my information from the nurses that are handling her care. This has not been the most clear and the outlook seems to vary by personality of the nurse. Some are speculating if she will get off the vent and most are doubtful. Only one MD has called me on one occasion over the last 6 days without me initiating. I have found this lack of ingormation a detriment to my hope and understanfing
My mom is so agitated now that they have her in wrist restraints. This really upset me today and I decided I wanted her suffering to stop. She had a chest tube placed yesterday to drain the pleural fluid with the hope she could wean from the vent. Because of the agitation she has not been able to follow commands or focus her eyes. They are concerned that even if she could get off the ventilator that she would be too weak to undergo chemo. Tomorrow we have a phone conference with 3 MDs that the palliative care MD has arranged. Thank goodness for his help. I have returned home yesterday but was able to be with my mom the last 10 days and I am thankful for that time.
I'm trying to stay positive but also afraid to let my guard down. Thanks for the kind words of understanding.
Wendy0 -
Hi,
My mom too has stage 3/4
Hi,
My mom too has stage 3/4 cancer, her symptoms were also ignored by her primary physican. Mom was finally diagnosed June 18th. She has had three rounds of chemo and is scheduled to have her surgery next Friday (Sept 3rd). Mom's CA 125 counts were orginally 14,300 and as of her second round of chemo were 6,800.
I am scared for her, they have also told us she will be in the hospital 3-5 days. I hope things go well. I don't know how I will handle it if the news is not good, I also cannot imagine having that conversation with my mom. I know the odds are not on her side but I also think well some people do survive it so why not my mom? Mom has always taken very good care of herself, watching what she ate and exercising at least two hours everyday.
I am really praying that things turn around for your mom too. It is an ugly disease but nobody has a crystal ball and nobody can tell us what can happen so please try and stay positive. Your Mom could also be one of the ones that beat the odds.
I see we are similiar in age. I am 42 with two daughters ages 16&14. My Mom will be 67 September 21st.
Keeping you in my thoughts.
Kelly0 -
Mazes
These journeys that we're on as caretakers and those dealilng with the disease are truly in a maze- but the thing is, when we hit the bump - we turn around and find another path to take. We never give up trying to get through the maze - somehow we are able to move forward. Sometimes we all travel for a long time before we take a turn, and even then, ever so slowly we make progress. Sometimes, we don't want to have to move at all so we rest (which is good) and then start up again, but that's how we are, that's how we're programed.
So with strength and perserverance, support from family and friends, prayer and Healing help- we continue on. I pray that your day today gives you hope and your Mom and your famiily some direction for moving forward, even the small steps. Peace and prayers, Ellen0 -
Still badNCEllen said:Mazes
These journeys that we're on as caretakers and those dealilng with the disease are truly in a maze- but the thing is, when we hit the bump - we turn around and find another path to take. We never give up trying to get through the maze - somehow we are able to move forward. Sometimes we all travel for a long time before we take a turn, and even then, ever so slowly we make progress. Sometimes, we don't want to have to move at all so we rest (which is good) and then start up again, but that's how we are, that's how we're programed.
So with strength and perserverance, support from family and friends, prayer and Healing help- we continue on. I pray that your day today gives you hope and your Mom and your famiily some direction for moving forward, even the small steps. Peace and prayers, Ellen
Just wanted to update the group: my mom is still in icu --for a week post surgery now. The palliative care MD called tonight to let me know that she is up to 100% on the ventilator. He prepared me for the possibility of another assault on my mom and the inability of the vent yo give more...leading to a heart failure or stroke. We discussed code status and I went ahead with DNR . I'm scared to death for this other heavy shoe to drop. Im a mess and still can't believe this is happening two months post dx. 95 % of the time I am okay and rational and then the other time I can barely breathe from crying so hard. I WISH SOMEOne could answer WHY this is happening to me!!!!!
Wendy0 -
Wendy,wendybill said:Still bad
Just wanted to update the group: my mom is still in icu --for a week post surgery now. The palliative care MD called tonight to let me know that she is up to 100% on the ventilator. He prepared me for the possibility of another assault on my mom and the inability of the vent yo give more...leading to a heart failure or stroke. We discussed code status and I went ahead with DNR . I'm scared to death for this other heavy shoe to drop. Im a mess and still can't believe this is happening two months post dx. 95 % of the time I am okay and rational and then the other time I can barely breathe from crying so hard. I WISH SOMEOne could answer WHY this is happening to me!!!!!
Wendy
I am so sorry to hear
Wendy,
I am so sorry to hear this news... saying a prayer for you, your mom and the rest of your family.0 -
impossible griefwendybill said:Still bad
Just wanted to update the group: my mom is still in icu --for a week post surgery now. The palliative care MD called tonight to let me know that she is up to 100% on the ventilator. He prepared me for the possibility of another assault on my mom and the inability of the vent yo give more...leading to a heart failure or stroke. We discussed code status and I went ahead with DNR . I'm scared to death for this other heavy shoe to drop. Im a mess and still can't believe this is happening two months post dx. 95 % of the time I am okay and rational and then the other time I can barely breathe from crying so hard. I WISH SOMEOne could answer WHY this is happening to me!!!!!
Wendy
Wendy, I am so sorry for this impossible grief you must bear all of a sudden. You are bearing your mother's pain as well as your own. Let it rip -- like reverse childbirth.
Your mother's suffering will be brief, and that is a blessing. You made the right decision (I could say that 50 times). In the last year I have been over Mom's health care directive with her twice, and she definitely would have opted for the DNR order if she were in your mother's situation.
We are all praying for you.0 -
Why not?wendybill said:Still bad
Just wanted to update the group: my mom is still in icu --for a week post surgery now. The palliative care MD called tonight to let me know that she is up to 100% on the ventilator. He prepared me for the possibility of another assault on my mom and the inability of the vent yo give more...leading to a heart failure or stroke. We discussed code status and I went ahead with DNR . I'm scared to death for this other heavy shoe to drop. Im a mess and still can't believe this is happening two months post dx. 95 % of the time I am okay and rational and then the other time I can barely breathe from crying so hard. I WISH SOMEOne could answer WHY this is happening to me!!!!!
Wendy
I asked why I got ovarian cancer after faithfully having a gyn/check up each year also. I learned to change that to "Why not you?" I'm not so special. Perhaps there is an answer that will come in the future to us all. I am just glad I have this discussion group to vent on and know that the ladies here really understand whether patient or caretaker. Saundra0 -
Why not me?saundra said:Why not?
I asked why I got ovarian cancer after faithfully having a gyn/check up each year also. I learned to change that to "Why not you?" I'm not so special. Perhaps there is an answer that will come in the future to us all. I am just glad I have this discussion group to vent on and know that the ladies here really understand whether patient or caretaker. Saundra
Wendy,
I am so sorry for your and your mother's suffering. This cancer has taught me that life can change forever in an instant and that you have to go on as best as you can. My clergyman counseled me to be "even a little better" as a way of coping with the circumstances. So, I try to be a better wife, mom, daughter and person. -Roxanna0
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