What can you tell me??
I just read about Rooker Bird, who has just recently passed away. She opted not to share her last weeks with everyone on this website by writing in the discussion boards.
I write a blog to my family and closest friends and I have often wondered what I will do when it gets close to the end. I suppose I will keep talking cause well... I am a talker.
I am trying to get my head around the ultimate ending of this illness. I have asked when I will likely die, what signs should I look for, how will I recognize when the end is near... but never got answers from my doctor. Just vague wait and sees.
I wanted to know if you could share with me what to expect. How will the end go?
I was diagnosed with stage 4 OC in March of 2010. I have had the complete hysterectomy, spleenectomy and bowel obstruction that ended up with a colostomy. My last three types of chemo seem to have caused more problems and my numbers doubled. For now I have opted out of chemo so that my body can recoup a little. I feel so much better than I did 2 weeks ago. CA-125 is around 7500. My OC has spread to my liver and lymph nodes...My doc says the liver will be what gets me.
I would really appreciate your straight forward info. Where would there be a better place than right here for straight answers?? I am not throwing in the towel... just need to know.
Thanks in advance,
Billie
Comments
-
HELLO, BILLIE
You have such a beautiful smile, and a strong, fighting spirit. My first-hand experience with your question would be my mother who passed away from colon cancer. My mother never complained, never asked for pain meds. However, it was apparent in the last 2 weeks that it would eventually be the best choice, as she may begin to sleep more and not be able to ask for anything. Sure enough, in the last 3 days my mother became more quiet, more restful. She was at home, and my sister and I were by her side.
I think it's important to explore your options, and find what will be best for you. Since this is a process, you may only be able to make those decisions as the options are presented to you. But it sounds like you have a lot of fighting spirit left, and as you know, there are many testimonies of hope here.
As for 'what to expect', I would like to share this with you - in the last week or so my dear mother began to sometimes stare into the distance, maybe at the mirror in her room, or the window. It appeared as though she were having a conversation, because she would nod her head, or point to something. When I asked her who she was talking to, she said my Dad, who had passed in 1994. At times she also mentioned her mother, who was also gone. Once, she said my Dad asked her to come and sit on the grass with her. She said it was so bright green, and so soft. And once she mentioned that her mother gave her a drink of the coldest, freshest, purest water she had ever tasted.
Because of my strong faith, Billie, these events brought me comfort. And I know that they were of comfort to my mother also. It made her journey so wonderful, pain free, and complete. IF AND WHEN the time comes for you, for any of us, I pray for the same.
Sending (((HUGS))) & PRAYERS,
Monika0 -
Billie, I'm sorry that you
Billie, I'm sorry that you have reached this point in your journey. I can only imagine what you are feeling right now. I pray that God gives you strength, courage and clarity to make whatever decisions you need to make.
Stay strong and know that we are all here for you.
God bless!
Carmen0 -
Hi Bilie , I watched mum goLoveButterflies said:Billie, I'm sorry that you
Billie, I'm sorry that you have reached this point in your journey. I can only imagine what you are feeling right now. I pray that God gives you strength, courage and clarity to make whatever decisions you need to make.
Stay strong and know that we are all here for you.
God bless!
Carmen
Hi Bilie , I watched mum go just before xmas , it was quick because she caught pneumonia , however , it was just like her body slowly shut down piece by piece and in the morning she was trying to communicate with us , however some of what she said did not make much sense, she was in no pain and seemed quite at peace. by the afternoon she was just dozing and when her eyes were open she didn't say much, what she did say was very laboured and we couldn't understand or really hear her, however she still did not seem to be in distress about this.finally a few hours later she just slipped away, it was so peaceful.
The doctors had been talking about her going into cardiac arrest , it just seems such a harsh term , you imagine a big struggle to keep on breathing , ad it being really very distressing to watch.It was really peaceful , I was upset afterwards , I still am now , but it wasn't nearly as bad as I had imagined it could be.
I hope my post helps , I know mums situation is slightly different as it happened reasonably quickly.
Take care, Liz xxx0 -
End of lifeMum2bellaandwilliam said:Hi Bilie , I watched mum go
Hi Bilie , I watched mum go just before xmas , it was quick because she caught pneumonia , however , it was just like her body slowly shut down piece by piece and in the morning she was trying to communicate with us , however some of what she said did not make much sense, she was in no pain and seemed quite at peace. by the afternoon she was just dozing and when her eyes were open she didn't say much, what she did say was very laboured and we couldn't understand or really hear her, however she still did not seem to be in distress about this.finally a few hours later she just slipped away, it was so peaceful.
The doctors had been talking about her going into cardiac arrest , it just seems such a harsh term , you imagine a big struggle to keep on breathing , ad it being really very distressing to watch.It was really peaceful , I was upset afterwards , I still am now , but it wasn't nearly as bad as I had imagined it could be.
I hope my post helps , I know mums situation is slightly different as it happened reasonably quickly.
Take care, Liz xxx
Billie
The doctor said that liver failure would be the reason for your demise. Linda Procopio was a lovely woman who succumbed to liver failure. Linda posted on the ovarian & uterine discussion boards up to about a week before she made the transition. You might find her posts by using her name in a search (lindaprocopio). Linda liked to be sun tanned so it wasn't obvious that she was jaundiced until the whites of her eyes were yellow.
I don't know if you have looked online for your answers. Here's a helpful link:
http://www.hospicefoundation.org/endoflife
Pneumonia is a reasonable expectation, too, because of the bone marrow suppression.
Best wishes to you.0 -
The last days/weeks.
Hi Billie,
I lost my mom to OVCA in August 2011. My Mom had a wonderful spirit about her and everyone she met instantly liked her.
My Mom had stage 3C. When diagnosed she had already been ill for quite some time. Mom's tumour was inoperable because her cardiac line ran through it.
Mom started chemotherapy June 2010. She tolerated the chemo pretty well although her biggest complaint was nothing tasted right. She had a pretty good summer, fall and the winter was not too bad either but Mom was scared and depressed.
Late winter of 2010 she confided in me she was afraid for spring to come because she didn't think she'd be here. At this point she was doing a clinical trial because the traditional chemo was no longer effective. Chemo was weekly.
Spring 2011 Mom started to lose a pound at each appointment and the oncologist said not to worry unless she lost more then 10% between appointments.
At her April appointment mom was pulled out of the clinical trial because her tumour had grown from 9 cm to 10. She then started doxil. Her first treatment went beautifully, we were optimistic. She felt a little better but she was still incredibly tired. In May we did not notice a change for the better and in June Mom was sleeping more and more. Still no pain. Towards the end of June mom was talking about having a sore throat.
July 16th, I took mom for her chemo appointment and was very upset to learn she had lost 7 lbs. At this point mom was 84 lbs, before she got sick she was 135. I think I knew it was the beginning of the end yet I was in denial. I thought if she would just eat she would put on weight and feel better. While waiting for the oncologist mom began to cry and begged me not to tell the doctor about her throat. I assured her she was probably just harbouring a cold. I now believe Mom was having difficulty swallowing but she didn't want us to worry.
As July progresssed Mom seemed to be a little worse and slept more. I remember my father calling the oncolgist at the end of the month telling her you've got to do something or Sam won't see he Sept 21st birthday. He was right.
At this point mom was put on ringers lactate to help with her nutrional needs. The oncologist agreed to see mom August 5th, three days before her next chemo.
At that appointment the oncologist told mom her time was short, she had a month. Mom decided August 8th to come off the ringers lactate after being told it would only give her a few more days. We supported her decision, this was her life and her body and she didn't have a lot of choices at the very least she should have the right to choose this.
On the 11th the palliative care nurse came to the house to put three tiny needle type things in mom. One on her arm and one on each leg incase she began to experience pain. We gave her the ones in her legs to help with acid reflux (mom had dealt with it her whole adult life), one for hydromorph, which was for pain.
Mom wanted banana popsicles only which we gave her and no food. It was too difficult for her and she had zero desire for it. We were told eating would interrupt the dying process and make it more difficult.
Mom went to meet the angels August 17th at 5:32 in the morning. She passed away in her own bed and never experienced any pain. For that I am greatful.
I hope this is not too much information for you. I have always believed if people ask a question they deserve an honest answer.
On a sidenote when mom's surgery was unsuccessful her oncologist told us 12-18 months and Mom survived 11 1/2 months.0 -
Oh my goodness
I've often wondered how I'd feel if I knew I had little time left. You are proving that people can do it and do it with grace.
You will be in my prayers. Please keep us posted.0 -
Dear Billie Mimitmpage1273 said:Oh my goodness
I've often wondered how I'd feel if I knew I had little time left. You are proving that people can do it and do it with grace.
You will be in my prayers. Please keep us posted.
Sending you love and prayers.
Kelly0 -
Dear Tethys41,Tethys41 said:Best resource
CarolenK could best answer this question. As I recall, she posted about this topic 6 or 8 months ago in response to another member's inquiry, but I don't recall the name of the thread. Hoping for the best for you and hope that you find peace.
Thank you so
Dear Tethys41,
Thank you so much. I will seek it out and I so appreciate your response.
All my love,
Billie0 -
Dearest Monika,mopar said:HELLO, BILLIE
You have such a beautiful smile, and a strong, fighting spirit. My first-hand experience with your question would be my mother who passed away from colon cancer. My mother never complained, never asked for pain meds. However, it was apparent in the last 2 weeks that it would eventually be the best choice, as she may begin to sleep more and not be able to ask for anything. Sure enough, in the last 3 days my mother became more quiet, more restful. She was at home, and my sister and I were by her side.
I think it's important to explore your options, and find what will be best for you. Since this is a process, you may only be able to make those decisions as the options are presented to you. But it sounds like you have a lot of fighting spirit left, and as you know, there are many testimonies of hope here.
As for 'what to expect', I would like to share this with you - in the last week or so my dear mother began to sometimes stare into the distance, maybe at the mirror in her room, or the window. It appeared as though she were having a conversation, because she would nod her head, or point to something. When I asked her who she was talking to, she said my Dad, who had passed in 1994. At times she also mentioned her mother, who was also gone. Once, she said my Dad asked her to come and sit on the grass with her. She said it was so bright green, and so soft. And once she mentioned that her mother gave her a drink of the coldest, freshest, purest water she had ever tasted.
Because of my strong faith, Billie, these events brought me comfort. And I know that they were of comfort to my mother also. It made her journey so wonderful, pain free, and complete. IF AND WHEN the time comes for you, for any of us, I pray for the same.
Sending (((HUGS))) & PRAYERS,
Monika
Sounds like
Dearest Monika,
Sounds like your sweet Mom had a beautiful crossing. I am so happy you and your sister were able to be there with her, and your Dad and Grandmother too. I have the same faith as you and know that I will be completely happy and overjoyed at a reunion like that.
I guess the timing of it all is what drives me batty. My sweet husband wants to take me on a cruise through the Mediterranean (which we really can't afford) and I am afraid of being away and getting sick. Plus, I just like it here, at home with my family and grand kids.
Thanks for sharing such a beautiful experience with me. I love you for that.
Big hugs and prayers back to you and sincere thanks,
Billlie0 -
You know what Carmen?LoveButterflies said:Billie, I'm sorry that you
Billie, I'm sorry that you have reached this point in your journey. I can only imagine what you are feeling right now. I pray that God gives you strength, courage and clarity to make whatever decisions you need to make.
Stay strong and know that we are all here for you.
God bless!
Carmen
I
You know what Carmen?
I actually feel great. My heart and mind are in a good place.I am so happy and have such love and support.
Its just annoying to know and not know at the same time.
I saw my regular GP doc on Thursday and asked him what to expect and he said he really didn't know either. Kinda crazy.
Thank you for your love, support and blessings. I know it is not up to me.I was never a very patient person! LOL!
Thank you so much for your input and God bless you too.
Billie0 -
Oh Darling Liz,Mum2bellaandwilliam said:Hi Bilie , I watched mum go
Hi Bilie , I watched mum go just before xmas , it was quick because she caught pneumonia , however , it was just like her body slowly shut down piece by piece and in the morning she was trying to communicate with us , however some of what she said did not make much sense, she was in no pain and seemed quite at peace. by the afternoon she was just dozing and when her eyes were open she didn't say much, what she did say was very laboured and we couldn't understand or really hear her, however she still did not seem to be in distress about this.finally a few hours later she just slipped away, it was so peaceful.
The doctors had been talking about her going into cardiac arrest , it just seems such a harsh term , you imagine a big struggle to keep on breathing , ad it being really very distressing to watch.It was really peaceful , I was upset afterwards , I still am now , but it wasn't nearly as bad as I had imagined it could be.
I hope my post helps , I know mums situation is slightly different as it happened reasonably quickly.
Take care, Liz xxx
How sweet of
Oh Darling Liz,
How sweet of you to share something like this with me. You are as beautiful as you are kind. I am so happy that your Mom passed peacefully and it was hopefully a bit easier for you to deal with. I do so appreciate the information. My Hubbie is so worried that I will suffer. His Mom had a long and painful ending and he is so scared about me. Your words have helped more than you know.
Thank you for taking the time to post and share your experience. I am completely convinced that your Mom is watching over you and your family every minute and that she is infinitely proud of you.
All my love,
Billie0 -
hi billie.....i am so sorryBillie Mimi said:Dearest Monika,
Sounds like
Dearest Monika,
Sounds like your sweet Mom had a beautiful crossing. I am so happy you and your sister were able to be there with her, and your Dad and Grandmother too. I have the same faith as you and know that I will be completely happy and overjoyed at a reunion like that.
I guess the timing of it all is what drives me batty. My sweet husband wants to take me on a cruise through the Mediterranean (which we really can't afford) and I am afraid of being away and getting sick. Plus, I just like it here, at home with my family and grand kids.
Thanks for sharing such a beautiful experience with me. I love you for that.
Big hugs and prayers back to you and sincere thanks,
Billlie
hi billie.....i am so sorry you are faced with this....i am stage IV as well...diagnosed in aug 10.....my cancer has spread all thru out the peritoneal cavity....i have a colostomy as wall. and my ca125 has been as high as 1384...my onc. told me that if the gemzar i'm on doesn't work that we are running out of options.
as far as the end...i've had the priviledge of being at the bedside of my beautiful mother, my father in law and my mother in law when they passed....all three were peaceful ...especially my mom...i always said if death could be called beautiful...her's was.
but i think you and i are thinking along other lines....we want to live our life as fully to the end but are afraid to. i have booked my entire family on a four night vacation to st. maarten at the end of april. i should be so excited , but all i can think of is the "what if's??? i have pains in my upper abdomen, the fatigue is maddening, and i'm constantly out of breath from the pleural effusion. like you, my house is my comfort zone ... i feel better here than anywhere. on the other hand....consider the memories you may be passing up....i say book the cruise and take out the cancellation insurance....maybe you could consider a trip a little closer to home....the thought of a transatlantic flight sends me into a tailspin just thinking about it. my mission at this point is to create a fabulous memory for my family....i want them to look back and remember a great trip we ALL were able to take together...something that hasn't happened in over 10 years....and hope that will put a smile on their faces . only God knows when he will take us....it's up to us to choose how to spend our remaining days. my prayers are with you....i hope you GO !!!! xoxo...karen0 -
Dearest Kelly,kellyh33 said:The last days/weeks.
Hi Billie,
I lost my mom to OVCA in August 2011. My Mom had a wonderful spirit about her and everyone she met instantly liked her.
My Mom had stage 3C. When diagnosed she had already been ill for quite some time. Mom's tumour was inoperable because her cardiac line ran through it.
Mom started chemotherapy June 2010. She tolerated the chemo pretty well although her biggest complaint was nothing tasted right. She had a pretty good summer, fall and the winter was not too bad either but Mom was scared and depressed.
Late winter of 2010 she confided in me she was afraid for spring to come because she didn't think she'd be here. At this point she was doing a clinical trial because the traditional chemo was no longer effective. Chemo was weekly.
Spring 2011 Mom started to lose a pound at each appointment and the oncologist said not to worry unless she lost more then 10% between appointments.
At her April appointment mom was pulled out of the clinical trial because her tumour had grown from 9 cm to 10. She then started doxil. Her first treatment went beautifully, we were optimistic. She felt a little better but she was still incredibly tired. In May we did not notice a change for the better and in June Mom was sleeping more and more. Still no pain. Towards the end of June mom was talking about having a sore throat.
July 16th, I took mom for her chemo appointment and was very upset to learn she had lost 7 lbs. At this point mom was 84 lbs, before she got sick she was 135. I think I knew it was the beginning of the end yet I was in denial. I thought if she would just eat she would put on weight and feel better. While waiting for the oncologist mom began to cry and begged me not to tell the doctor about her throat. I assured her she was probably just harbouring a cold. I now believe Mom was having difficulty swallowing but she didn't want us to worry.
As July progresssed Mom seemed to be a little worse and slept more. I remember my father calling the oncolgist at the end of the month telling her you've got to do something or Sam won't see he Sept 21st birthday. He was right.
At this point mom was put on ringers lactate to help with her nutrional needs. The oncologist agreed to see mom August 5th, three days before her next chemo.
At that appointment the oncologist told mom her time was short, she had a month. Mom decided August 8th to come off the ringers lactate after being told it would only give her a few more days. We supported her decision, this was her life and her body and she didn't have a lot of choices at the very least she should have the right to choose this.
On the 11th the palliative care nurse came to the house to put three tiny needle type things in mom. One on her arm and one on each leg incase she began to experience pain. We gave her the ones in her legs to help with acid reflux (mom had dealt with it her whole adult life), one for hydromorph, which was for pain.
Mom wanted banana popsicles only which we gave her and no food. It was too difficult for her and she had zero desire for it. We were told eating would interrupt the dying process and make it more difficult.
Mom went to meet the angels August 17th at 5:32 in the morning. She passed away in her own bed and never experienced any pain. For that I am greatful.
I hope this is not too much information for you. I have always believed if people ask a question they deserve an honest answer.
On a sidenote when mom's surgery was unsuccessful her oncologist told us 12-18 months and Mom survived 11 1/2 months.
What a
Dearest Kelly,
What a trooper you are to go through all of that and be kind enough to share it all with a total stranger. I so appreciate you doing that for me.
I was offered the clinical trials too but being in a hospital for chemo so much... and then not even knowing if I am getting any meds to help.. is not for me. I have been through a ton of chemo and I am just done with it.
I know I don't have a long time and I am okay with that. I just want to make the most of it. I am taking lots of supplements and vitamins and I have some hair... although its really thin. The last chemo cause all my gray hair to fall out! Guess we take the good with the bad. : )
I am glad she made her way without pain. It sounds like she was at peace and I know that had to have helped you deal with it too. You know we all feel terrible for what we put our families through when we have this disease. That is my single biggest heart ache. We all die, but this is so hard on everyone. But I have also found that it has made everyone in my family extra aware of how precious life is and not to take it for granted. Now there is a true blessing. If my cancer can do that, bring it on.
Thank you again for sharing some very personal details. It does truly help me to hear. I hope you are doing well and I know that your Mom is. You must feel her love all of the time. I am sending you my love right now.
Take care and get out there and live your life to the fullest!!
All my love,
Billie0 -
Hey tmpage1273,tmpage1273 said:Oh my goodness
I've often wondered how I'd feel if I knew I had little time left. You are proving that people can do it and do it with grace.
You will be in my prayers. Please keep us posted.
Reality is a
Hey tmpage1273,
Reality is a good thing. I know I don't have a long time... so I just want to make what I have as wonderful as possible. I don't know about having a lot of grace but I certainly appreciate your comment. And you sweet prayers. We are all going to go through it. I just have a little heads up. This way I get to tie up any loose ends. Make amends and make sure everyone knows how much I love them. I am even teaching my youngest son, who is 30, to cook some of his favorite dishes!
Again, thanks so much.
All my love,
Billie0 -
Dear Kelly,lovesanimals said:Dear Billie Mimi
Sending you love and prayers.
Kelly
Thank you for
Dear Kelly,
Thank you for the love and prayers. I am sending them right back to you.
Life is so beautiful...
Billie0 -
Dear Carolenk,carolenk said:End of life
Billie
The doctor said that liver failure would be the reason for your demise. Linda Procopio was a lovely woman who succumbed to liver failure. Linda posted on the ovarian & uterine discussion boards up to about a week before she made the transition. You might find her posts by using her name in a search (lindaprocopio). Linda liked to be sun tanned so it wasn't obvious that she was jaundiced until the whites of her eyes were yellow.
I don't know if you have looked online for your answers. Here's a helpful link:
http://www.hospicefoundation.org/endoflife
Pneumonia is a reasonable expectation, too, because of the bone marrow suppression.
Best wishes to you.
Thank you so
Dear Carolenk,
Thank you so much for sharing Linda's post and situation with me. I will find and read what she had to say and I know it will help. I so appreciate your straight forward honesty with me. It is exactly what is needed. I haven't contacted hospice yet, but they are on my list for next week, just to get acquainted with them and get a little more insight. Thank you for the recommendation. Pneumonia isn't a bad way to go either. I am really okay with it all just the not knowing that bugs me. I want to make it as easy on everyone else as I can. My family has already hurt so much but I really believe they are getting some huge life lessons from it too, and that is a beautiful thing.
Much appreciation and big love to you,
Billlie0 -
dying
I have just been diagnosed on February 29th of this year. I have ovarian cancer Stage 1A, Tumor Grade 3. My understanding is the tumor grade makes my prognosis much less. Even with chemo it is a "slippery" type of cancer that could already be other places. My CT had some worrisome spots, but I think the Dr believes, do the chemo and we will "see". My journey is not nearly as far along as yours, and I in no way mean to minimize your question. The reason I told you all this, is that I have the same worry. I am not giving up, but feel like this is worse than they believe. Intuition? I don't know, but I knew what it was before the biopsy. I just knew. So believing that, I have asked the same question. What happens at the end? and they shrug me off, telling me to stay strong. I am the type of person that needs ALL the good and the bad to think clearly and I dont get the answers. Everyone is different, but I agree, if they could just say what to watch for. I find it interesting that you and some others who commented find their homes the safe place. I feel that way too. On the one hand I would love to take the whole family to our favorite cabins in TN. But then on the other hand the thought of that terrifies me.
I think I will visit the website someone suggested, hospice care. It may be informative and answer some of our questions. You have a beautiful smile, encouraging strength (and I know you get tired of hearing that), and God bless you and your family.0 -
Creating your own realityundertreatment2012 said:dying
I have just been diagnosed on February 29th of this year. I have ovarian cancer Stage 1A, Tumor Grade 3. My understanding is the tumor grade makes my prognosis much less. Even with chemo it is a "slippery" type of cancer that could already be other places. My CT had some worrisome spots, but I think the Dr believes, do the chemo and we will "see". My journey is not nearly as far along as yours, and I in no way mean to minimize your question. The reason I told you all this, is that I have the same worry. I am not giving up, but feel like this is worse than they believe. Intuition? I don't know, but I knew what it was before the biopsy. I just knew. So believing that, I have asked the same question. What happens at the end? and they shrug me off, telling me to stay strong. I am the type of person that needs ALL the good and the bad to think clearly and I dont get the answers. Everyone is different, but I agree, if they could just say what to watch for. I find it interesting that you and some others who commented find their homes the safe place. I feel that way too. On the one hand I would love to take the whole family to our favorite cabins in TN. But then on the other hand the thought of that terrifies me.
I think I will visit the website someone suggested, hospice care. It may be informative and answer some of our questions. You have a beautiful smile, encouraging strength (and I know you get tired of hearing that), and God bless you and your family.
UT2012,
I understand that there is some sort of comfort in knowing all there is to know. On the other hand, there is what is known as the nocebo effect. This is the opposite of the placebo effect where the patient improves with no real treatment, simply because she thinks she is receiving a proven treatment. The nocebo effect causes the patient's condtion to deteriorate merely due to the patient's belief that she will get worse. I chose not to have the discussion with my doctor about my prognosis. My case was not good, my disease was very aggressive, stage IIIc, my surgery suboptimal. I wrestled with many issues most ovca patients don't, like recurring ascites for two months following surgery, a staph infection of the peritonemum, and severe malnutrition. But I focused not on what was going wrong, but on getting better. I did get better. I've been finished with chemo and NED for over two years. I feel better now than I have for years. I later found out from by brother that the doctor was giving me less than a year, at the time of my surgery. So glad I didn't know that at the time.0
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