Can you ladies please remind me again......

dorion

Hello Ladies
Well it's me again, your long lost friend Linda......if anyone remembers. For those of you who don't let me refresh your memory or give you a brief history. It's fast approaching the dreaded two year mark of my diagnosis while at the time living in Hawaii. I was diagnosed with stage III ovarian. After of course a complete hystorectomy. I decided to move back to Canada and undergo my treatments here. I was told after my surgery that I have 3 to 3 1/2 year to live.....well thinking that I was handling all this very well, things are starting to break down. For example, bowel obstruction and the next thing was my ureta (spelling sorry) is blocked and I need shunts. Fortunately the insertion of the shunts were successful and the levels are dropping.

Ok to spare you gals of all the details and get right to the point, I was told by the urologist that more in likely the cause of my demise will be kidney failure, but the bright side is that I'd go peacefully. Imagine that, there is a bright side.....now today my oncologist who wants to specialize in bowel obstructions is telling me that I will more than likely die of a bowel obstruction.

With this 3 year mark approaching soon, I'm so scared...when I asked him if I can make plans for the coming summer his reply was "if I see you in my office with the same smile and looking the way I do now, he would be very very happy. He can't predict.

All I wanted was him to throw me a bone........I'm trying so hard to stay focused and possitive but I'm being taken hostage by frightening thoughts. I need you ladies to remind me of how long one can really last. Who has the longest time under thier belt here that is battling stage 3? IS there hope??? Can I make plans? I won't even think about buying myself that flat screen tv now, cos I think, what's the point. More importantly, my driving force is my 11 year old daughter Meghan.

I need some encouragement....perhaps you ladies can throw me that bone. I am so sorry if I appear selfish and only caring for just me, that's not true, I know there are a lot of you Ladies going through worse and I pray for all of u and me. I just need you guys and I will continue to stick around here in this room. I've realised that can't cope without u guys. I'm so afraid to be alone, can't stand my thoughts. I love each and every one of you always...

Linda

Unknown

This comment has been removed by the Moderator

JoanC

Stay Positive
Linda,
I have to second what Nancy said....How dare they!!! If I am not mistaken Bonnie's sister is a 9 yrs survivor and Bonnie is like at 6 an a half yrs. So you just hang in there and do not listen to "them" they no nothing for sure. I was dx 3c in April 2008 and on Oct 6th I will be 1 yr no chemo and NED. My dr. has never been anything but positive....or at least keeps his opinion to himself...LOL
(((((HUGS)))) We love you too!
Joan

billsgal

Hi Linda, I'm sorry to hear about your experiences with your doctors. I wouldn't want to have those doctors, that's for sure. When I was first diagnosed with Peritoneal Carcinomatosis (metasticized from breast cancer I had in 2001) a year ago last July, my oncologist asked me if I wanted to know how long I had to live. I was shocked, but said no I don't want to know. He then said "Good, because I don't know. Each person is different; some have lived 2 years, some 5 years, some 10-15 years. It's a very individual thing." And my urologist never gave me any idea that I had what would be called a "fatal" condition. What I have is similar to and is treated like ovarian cancer. It is cancer "caking" and "implants" with ascites (fluid) in the stomach lining (peritoneum and omentum) and (so far) only on the outside of the internal organs. It was crowding my kidney ureters, so I have stents in both kidneys for a year now, with them being replaced every 4 or 5 months. That's to avoid clogging and infection. After having chemo for 8 months, I am now on Aromasin (estrogen blocker). My last CT scan showed that everything was "stable" and I just had another one yesterday which I hope will be the same if not better. Maybe I am just an eternal optomist, but I don't feel as if I have one foot in the grave. I feel fairly decent, and I have a pretty good quality of life and am thankful for that. I just wanted you to know that, even though we may know deep down that this (or something else perhaps) is going to take us down at some point, it's not a good idea to dwell on that. Life is sweet, and if we have love and support around us, it makes it that much sweeter. Thinking of you and wishing you all the best as you try to cope with these feelings that sometimes are overwhelming to us.
Carolyn

nancy591

just curious
Did you ask your surgeon how long you had to live or did he just offer his opinion? I find that doctors really don't offer too much information unless you ask a specific question.

I'm also curious to know, since your surgery did you have a reoccurence?

I understand how you feel about the ongoing fear. I've been out of chemo for 5 months and I am terrified of a reoccurence. Everytime I get abdominal pain my fear spins out of control and I get abdominal pain alot! I too have young kids. My youngest just turned 4. It really sucks.

BonnieR

No one can tell you that
Hi Linda, so glad to hear you are still beating the odds. You know my feelings on someone telling you how long you have. Not sure why they do that, but when they do they are just comparing to all the women in the stage we are. My Doc did tell me one time, when he thought I was coming to the end, which I understood as I really need to know this. But he does not predict months or years other than that. We are all different, I would say if you are feelign pretty good overall ~ Just continue to live life to the fullest. Hugs ♥ Prayers Bonnie

mopar

HI LINDA!
This is Monika - remember me? We conversed for quite some time via email. It's so good to see your post, but not so good to hear what you've been dealing with. Without going into too much detail, I have concerns about the care you are getting in Canada. I know, you are where you are, and must deal with what you have. But judging by the attitude and medical 'advice' that you are receiving, I wonder if everything that can be done IS being done.

I hope by now all the wonderful posts have given you some peace and hope. Surely, there is no one (besides the Good Lord Himself) who can say how long you have. Statistics may be a point of reference, but don't necessarily hold true in all situations. Replies from Bonnie and others are proof of that.

For me, I noticed that it was more difficult to be positive and hopeful when I had pain. It's almost like, 'outa sight, outa mind'. If it wasn't there, I was able to focus much better and move forward instead of feeling defeated. I suppose that would hold true for most of us. Anyway, as for planning for next summer, I say, DO IT! Those are some of the things that keep us going, beyond all odds, having purpose and looking to the future. Without it, we would sink into a pit that's very hard to get out of. Of course, you will have your moments, but overall it's important to have some short term AND long term goals. Your daugther is definitely an incentive.

Well Linda, I hope this helps. Check back with us every now and then to let us know how you're doing. Till then, sending lots of hugs and prayers to you and your daugther.

(((HUGS)))
Monika

LPack

Linda!
Hi Linda!!

Glad to see you posting. And we are all here. Some more so than others!! LOL - I feel like I am here today but with all these Neulasta, Neupogen shots..............yukky, yukky and yukky.

I gave a testimony for a Ladies Luncheon two weeks ago. I am pretty much an upfront type of person. That is just me. When I spoke I did give the statistics regarding ovarian cancer and also breast cancer. For Ovarian Stage 3 and above the survival rate is 19% which is pretty low.

Now I told the ladies that I do not get caught up in man's figures (stats) because as Bonnie has already said and others too or will, none of us knows when our time is. Only God - He is the author of life. Only He knows our date of birth and date of when our life on earth is done. He knew before we were ever born.

So I don't get too upset when I hear "stuff". My onc/gyn is very blunt. I like it that way. Just the facts and only the facts. She is very good, but practical. She knows the statistics as that is part of her job. But she also knows that each of her patients are different. She has had some that have made it 20 years with ovarian stage 3 and some that have died rather fast with lesser stages.

When I get discouraged I read scriptures. That is what helps me. And posting on here is so very helpful. I also find if I do something for someone else, it helps me even more. Just sending out some cards to a few others that may need encouragement. Or preparing a meal for someone who just had surgery. (Even when I don't feel like it, it helps me).

Keeping you in my prayers......

In His Grip,
Libby

dorion

awww u guys r great
I knew I could count on u ladies to give me the encouragement and stregnth I need. I was doing pretty great up until a week ago, with everyone sticking their noses into this prognosis thing. And then this guy yesterday........it's like I've been doing great with the odd visit to the ER with this and that, mainly my bowel thing. I've been taking so many laxitives since yesterday hoping to get things moving cos I'm trying to unobstruct this obstruction (LOL) sounds like a catchy new tune eh? Had a small victory this morning. You Ladies are right, I need to focus on today and hang on to the days and weeks when I feel good. I need to block this week out of my head. I decided to take each day by storm, that was my last thoughts before I went to sleep lastnight, well maybe I thought to hard about that and ended up waking up at 3:51 p.m. Now I want to lay down again. But tomorrow is a new day and I will start all over again. I will be checking in with you girls everyday and I now realize not to get too complacent and keep in touch always. It's easy when I"m feeling better and good to forget that I have cancer. Oh to answere Nancy's question about reoccurance......well they never did get it all during my hysterectomy, and it's always been there. It just hasn't gotten any larger is all. I will pray for all of us and you Nancy, God Bless U, with your little ones, I know how u feel. Love to all of u and check in later.

Linda

saundra

dorion said:

awww u guys r great
I knew I could count on u ladies to give me the encouragement and stregnth I need. I was doing pretty great up until a week ago, with everyone sticking their noses into this prognosis thing. And then this guy yesterday........it's like I've been doing great with the odd visit to the ER with this and that, mainly my bowel thing. I've been taking so many laxitives since yesterday hoping to get things moving cos I'm trying to unobstruct this obstruction (LOL) sounds like a catchy new tune eh? Had a small victory this morning. You Ladies are right, I need to focus on today and hang on to the days and weeks when I feel good. I need to block this week out of my head. I decided to take each day by storm, that was my last thoughts before I went to sleep lastnight, well maybe I thought to hard about that and ended up waking up at 3:51 p.m. Now I want to lay down again. But tomorrow is a new day and I will start all over again. I will be checking in with you girls everyday and I now realize not to get too complacent and keep in touch always. It's easy when I"m feeling better and good to forget that I have cancer. Oh to answere Nancy's question about reoccurance......well they never did get it all during my hysterectomy, and it's always been there. It just hasn't gotten any larger is all. I will pray for all of us and you Nancy, God Bless U, with your little ones, I know how u feel. Love to all of u and check in later.

Linda

Thanks for the report
Glad that you checked in because I was thinking you checked out. LOL I am reading a book that would be good for you.. A lady that was dianosed in 1998 and "is missing more parts than is left" called "I'd Rather Do Chemo than Clean Out the Garage". She is Fran Di Giacomo and is choosing laughter over tears.

I am sure she will make you laugh. She is always playing trick on her doctors for a laugh....

God Bless you, and remember only he knows... Saundra

marygilbert

dorion said:

awww u guys r great
I knew I could count on u ladies to give me the encouragement and stregnth I need. I was doing pretty great up until a week ago, with everyone sticking their noses into this prognosis thing. And then this guy yesterday........it's like I've been doing great with the odd visit to the ER with this and that, mainly my bowel thing. I've been taking so many laxitives since yesterday hoping to get things moving cos I'm trying to unobstruct this obstruction (LOL) sounds like a catchy new tune eh? Had a small victory this morning. You Ladies are right, I need to focus on today and hang on to the days and weeks when I feel good. I need to block this week out of my head. I decided to take each day by storm, that was my last thoughts before I went to sleep lastnight, well maybe I thought to hard about that and ended up waking up at 3:51 p.m. Now I want to lay down again. But tomorrow is a new day and I will start all over again. I will be checking in with you girls everyday and I now realize not to get too complacent and keep in touch always. It's easy when I"m feeling better and good to forget that I have cancer. Oh to answere Nancy's question about reoccurance......well they never did get it all during my hysterectomy, and it's always been there. It just hasn't gotten any larger is all. I will pray for all of us and you Nancy, God Bless U, with your little ones, I know how u feel. Love to all of u and check in later.

Linda

Thank you so much for
Thank you so much for writing in what you did. I am a taking care of my Mom right now and she is Stage 3c ovarian. She, the same as you had a hysterectomy, but they were not able to get all the cancer. She has had 6 chemo treatments and battling to keep her platelets high enough to do so. She is getting ready for another surgery to try and remove her stomach lining and re-reroute her bowels (intestines) and remove a large tumor from her colon. We are just hoping the chemo has kept it at least from spreading more, wont know until she has her scan done. So for us its very scary to think about it and Mom had breast cancer 7yrs ago, and this time is so different, she is feeling like she is not going to beat this, and she is not really at the point where she wants to talk to us about anything negative and we (me and 2sisters) are reading all this stuff on the internet and thinking the worse,then when you hear testimonies like you find on here, it helps so much. I have been a wreck thinking that it could be any time soon, and it very well may be, but you guys have given me some hope,and maybe I can pass this on to her. I know that the man upstairs is the only one who knows...but you hear so much...I'm so glad that I found this web'site and I will continue to be part of, hopefully I can get my Mom involved as well....thank you so much!!!

jane65

dorion
Hi Dorion,
We've never met, but I'm glad to know you. I wish the circumstances were different, but here we are. I've been staged 4B, epithelial OVCA cancer which spread to my lymph nodes.

I was diagnosed in 2007 and I've been on carbo/taxol and then Topotecan. After my hernia surgery next month, and recovery from that, I'll start a new chemo regime because my cancer is back in the lymph nodes again. Darn!

My oncologist had told me a long time ago that their job is to keep us as healthy as possible, with the best quality of life possible.
He reassured me that there are always new cancer drugs coming along and they want to keep us here, because one may be the perfect drug for us.

I questioned him about my longevity, and he said he expects me to make the 5 year mark. I asked, he didn't volunteer.

I know it's hard for you to stay positive, but please realize and keep in mind, that you haven't been diagnosed with a relapse, and that is so wonderful!!

You're not being selfish asking about yourself, you apparently made lots of friends on this wonderful forum, and you're trusting the ladies to give you help and encouragement.
Reading their posts, I can see that is exactly what you got.

I look forward to exchanging chats with you.

Feel well,
Jane

jane65

unknown said:

This comment has been removed by the Moderator

Nancy
You go girl!

Keep kicking butt and stay well!
Jane

dorion

jane65 said:

Nancy
You go girl!

Keep kicking butt and stay well!
Jane

Hey guys, how can I send a personal email to you from this plateform. I would like to email all of you personally to have you on my list of friends. I'm just sitting here, should be sleeping, it's almost 2 30 a.m, can't sleep. Came here to reread your messages...lol.....sigh......I feel better again.....

Linda

kayandok

Dorion,
I agree with all gals here. I don't think there is a curriculum for the docs on dealing with "terminal" cancer patients. And if there is one, they all have a different one, and there is some curriculum out their that is way outdated!

I think together, we (the teal sisters) could write a very good one for them LOL! It would contain things like, I would want them to always give hope, be positive and promise they will do everything they can to fight the cancer with us. Then, if we ask them, "How long do you think I have to live?" The answer still needs to be vague and full of hope. BUT, IF and only IF we persist and ask for stats, then they are allowed to give stats, but only STATS not THEIR OPINION. So many have outlived the stats, and THEY ARE NOT GOD, so they have no idea. There would be many other good things I would include and if we start writing we may be here all night. Can you tell this pushes my buttons?

My friend from Canada is in the hospital right now and probably on her way to hospice soon. The other day her onc (also mine) came in and told her she has 1 to 3 months left. That made me mad. How does he know? I know he thinks, for some reason this is the best information to give, on the other hand, she could easily have 6 months or a year. Off and on, he has given out his opinion even to me, and although he believes in giving hope, and has been a positive support, he sometimes doesn't realize the weight of the words he delivers to me or my friend seemingly without deep thought about it. And I actually like him and believe he is a very compassionate man.

Dorian, make your plans and go on living and loving each day to the fullest. You are a survivor!!

Warm hugs,
Kathleen

dorion

kayandok said:

Dorion,
I agree with all gals here. I don't think there is a curriculum for the docs on dealing with "terminal" cancer patients. And if there is one, they all have a different one, and there is some curriculum out their that is way outdated!

I think together, we (the teal sisters) could write a very good one for them LOL! It would contain things like, I would want them to always give hope, be positive and promise they will do everything they can to fight the cancer with us. Then, if we ask them, "How long do you think I have to live?" The answer still needs to be vague and full of hope. BUT, IF and only IF we persist and ask for stats, then they are allowed to give stats, but only STATS not THEIR OPINION. So many have outlived the stats, and THEY ARE NOT GOD, so they have no idea. There would be many other good things I would include and if we start writing we may be here all night. Can you tell this pushes my buttons?

My friend from Canada is in the hospital right now and probably on her way to hospice soon. The other day her onc (also mine) came in and told her she has 1 to 3 months left. That made me mad. How does he know? I know he thinks, for some reason this is the best information to give, on the other hand, she could easily have 6 months or a year. Off and on, he has given out his opinion even to me, and although he believes in giving hope, and has been a positive support, he sometimes doesn't realize the weight of the words he delivers to me or my friend seemingly without deep thought about it. And I actually like him and believe he is a very compassionate man.

Dorian, make your plans and go on living and loving each day to the fullest. You are a survivor!!

Warm hugs,
Kathleen

how do I email you guys personally?
Hello Girls
I'm trying to figure out how to send each of u a persanal email so I can have you on my list. And Kathleen, I'm wondering where in Canada are you? Would be great if you were in Toronto where I am. Thanks again for all your replies. I'm starting to feel a bit better and knowing that we are all in the same boat makes me realize I am so not alone. T|hank you for that.

kayandok

dorion said:

how do I email you guys personally?
Hello Girls
I'm trying to figure out how to send each of u a persanal email so I can have you on my list. And Kathleen, I'm wondering where in Canada are you? Would be great if you were in Toronto where I am. Thanks again for all your replies. I'm starting to feel a bit better and knowing that we are all in the same boat makes me realize I am so not alone. T|hank you for that.

e-mail
Hi Dorion, I have yet to figure out the e-mail system. Maybe a vet could help us out. I think you have to add someone as a friend first? Are you on FB? That is another good way to connect. Please add me if you are. Kathleen Benton.

I live in Japan. I have had most of my surgeries in the US and the chemo treatment here in Japan. I think most of my story is on my profile, but I can't remember.... My friend from CA has had all her treatment here, although consulted with a CA onc a couple times.

Lately I was reminded of an old friend that used to say, "Toughy up!!" instead "Hang in there" or "Go for it". I have been telling myself to TOUGHY UP!! lately. It makes me chuckle and smile and want to hang in there for the day!

so, TOUGHY UP!! Dorion,
Take care
kathleen

lei73

BUY THE TV
Im new to this (just signed up today) Im am going through stage 4 cervical. I think my dr. said it best when I was diagnosed. are you going to die? yes one day nobody lives forever. but can i or will I give you the time and date... nope! It worked for me. but I say buy the tv! they say live life to the fullest, so buy the tv and enjoy it everyday.