Just diagnosed Stage IV

habber · May 2011

Very afraid, and alone. Feels like I'm going down hill so fast. Fluid around lungs, not breathing very well, pain prevents me from lying down. Vomiting blood. They say chemo will help my lungs, but now with the blood I'm afraid it's already too late. Husband is having a very hard time with this and so stays away from me in another part of the house (he is also an alcoholic) . My sister is another addict and will be coming soon. I am afraid of a big fight that will devaste us both. We have been very close but she has been the ill one all of our lives (asthma). It's always like a competition of who suffers more, with me ending up agreeing that yes, it IS very hard on HER. So perhaps I am to blame for enabling both of them. I am hurt, angry, afraid and not thinking clearly. HOw have you all dealt with denial of those closest to you?

I have also have had a hard time with doctors--insensitive and maybe delaying treatment. (I presented pleural effusion at the beginning of April and start chemo this Tuesday). I have not been directed toward any support group or resources. So I guess what I would like to hear is that others have "thought" themselves into being sicker than they really are to get attention. Which is what I hope I am doing.--and I am really not going to die very very soon.

poopergirl14052 · May 2011

welcome Habber
I am glad you came here.We can help you. Good luck with your chemo on tuesday..Keep the faith. What kind of chemo will you get??? I am, sure it will help with the fluid build-up. Also draining some of the fluid helps too. Keeps us posted and I will be thinking of you...val

habber · May 2011

poopergirl14052 said:
welcome Habber
I am glad you came here.We can help you. Good luck with your chemo on tuesday..Keep the faith. What kind of chemo will you get??? I am, sure it will help with the fluid build-up. Also draining some of the fluid helps too. Keeps us posted and I will be thinking of you...val

My first post was kind of crappy
Poopergirl--Thanks for your kind words. my chemo is taxol / cisplatin--3 rounds before surgery, 6 rounds after is the current plan.

I did not mean to imply that anyone is to blame for their illness (exempt me).

Should I simply accept a lack of support from husband and sister? (as my husband put it--"we are all fundamentally alone--nothing can change that") Should I just move on --move out and focus on being strong alone? Has anyone found poor company is worse than no company?

Should I cut them some slack (we haven't had much time to process this) in the hopes that no one is really thinking straight?

I should be focused on finding the best surgeon but just keep being eaten alive by family rejection.

LaundryQueen · May 2011

habber said:
My first post was kind of crappy
Poopergirl--Thanks for your kind words. my chemo is taxol / cisplatin--3 rounds before surgery, 6 rounds after is the current plan.

I did not mean to imply that anyone is to blame for their illness (exempt me).

Should I simply accept a lack of support from husband and sister? (as my husband put it--"we are all fundamentally alone--nothing can change that") Should I just move on --move out and focus on being strong alone? Has anyone found poor company is worse than no company?

Should I cut them some slack (we haven't had much time to process this) in the hopes that no one is really thinking straight?

I should be focused on finding the best surgeon but just keep being eaten alive by family rejection.

It's a hard question to
It's a hard question to answer. What's worse: being with dysfunctional family or being alone? Your husband & sister are already grieving in their own way--it sounds like you have always been there for them but who is here for you NOW?

I was so sick early on in my post-op recovery period I don't think I could have managed on my own. Do you have anyone else you can look to for support?

I think your situation is bad but could be worse (hopefully, you aren't homeless). Keep us posted--we're here for you.

LQ

kikiz · May 2011

LaundryQueen said:
It's a hard question to
It's a hard question to answer. What's worse: being with dysfunctional family or being alone? Your husband & sister are already grieving in their own way--it sounds like you have always been there for them but who is here for you NOW?

I was so sick early on in my post-op recovery period I don't think I could have managed on my own. Do you have anyone else you can look to for support?

I think your situation is bad but could be worse (hopefully, you aren't homeless). Keep us posted--we're here for you.

LQ

There is alot of help on
There is alot of help on here and information. Contact the American Cancer Society in your area and they will let you know what is available for support. Some have people that give rides. Some Chapters can help with Ensure, Wigs or just let you know where to go for help.

Also see if the Cancer Center has a social worker to help you walk through anything else.

If you let us know what part of the Country you live in, I am sure someone on here will be able to give you information. I have never met such a wonderful group of people in my life.

Let us know how you are doing and I will keep you in my thoughts.

Lori

kikz · May 2011

kikiz said:
There is alot of help on
There is alot of help on here and information. Contact the American Cancer Society in your area and they will let you know what is available for support. Some have people that give rides. Some Chapters can help with Ensure, Wigs or just let you know where to go for help.

Also see if the Cancer Center has a social worker to help you walk through anything else.

If you let us know what part of the Country you live in, I am sure someone on here will be able to give you information. I have never met such a wonderful group of people in my life.

Let us know how you are doing and I will keep you in my thoughts.

Lori

Habber
I can verify that the chemo will help with the fluid. I had so much fluid I looked like I
was about seven months pregnant which was pretty weird since I was 62 at the time. I had a total of eight liters drawn and I still had fluid, but after the first chemo it was all gone and so was the indigestion and heartburn. What others have said is so true, this is the place to get support and information. Good luck with your treatment.

Karen

poopergirl14052 · May 2011

kikz said:
Habber
I can verify that the chemo will help with the fluid. I had so much fluid I looked like I
was about seven months pregnant which was pretty weird since I was 62 at the time. I had a total of eight liters drawn and I still had fluid, but after the first chemo it was all gone and so was the indigestion and heartburn. What others have said is so true, this is the place to get support and information. Good luck with your treatment.

Karen

You must focus now on yourself
and getting better first. I am sorry your husband and sis are having a hard time when you need them so badly!!!. Is your hubby gettinh help, your sis too? You have a lot to deal with now so focus on getting well. Apositive attitude and faith really help get us through this. Do you have Mom or brother? I know I ask alot od questions tmi, but I want you to have some one there with you even a friend or co-worker. It is not anyones fault you are ill. Please take care of yourself first. Best wishes ....val

poopergirl14052 · May 2011

kikz said:
Habber
I can verify that the chemo will help with the fluid. I had so much fluid I looked like I
was about seven months pregnant which was pretty weird since I was 62 at the time. I had a total of eight liters drawn and I still had fluid, but after the first chemo it was all gone and so was the indigestion and heartburn. What others have said is so true, this is the place to get support and information. Good luck with your treatment.

Karen

You must focus now on yourself
and getting better first. I am sorry your husband and sis are having a hard time when you need them so badly!!!. Is your hubby gettinh help, your sis too? You have a lot to deal with now so focus on getting well. Apositive attitude and faith really help get us through this. Do you have Mom or brother? I know I ask alot od questions tmi, but I want you to have some one there with you even a friend or co-worker. It is not anyones fault you are ill. Please take care of yourself first. Best wishes ....val

Hissy_Fitz · May 2011

habber said:
My first post was kind of crappy
Poopergirl--Thanks for your kind words. my chemo is taxol / cisplatin--3 rounds before surgery, 6 rounds after is the current plan.

I did not mean to imply that anyone is to blame for their illness (exempt me).

Should I simply accept a lack of support from husband and sister? (as my husband put it--"we are all fundamentally alone--nothing can change that") Should I just move on --move out and focus on being strong alone? Has anyone found poor company is worse than no company?

Should I cut them some slack (we haven't had much time to process this) in the hopes that no one is really thinking straight?

I should be focused on finding the best surgeon but just keep being eaten alive by family rejection.

First of all, you are not
First of all, you are not selfish in thinking this is all about you, because it is. If your husband and/or your sister aren't emotionally supportive, the least they can do is be there physically because you will need a LOT of help after surgery and to get thru chemo. I hope your de-bulking goes smoother, but I was in the hospital for 17 days and could not eat for most of that time. I had to go on TPN feedings (liquid nutrition administered thru a chest port). When I finally got home, I was weak as a kitten, and of course, I could not drive for a long time.

You need a gyn/oncologist for your surgery. Studies show that women who are de-bulked by a specialist have a better outcome. Tell us where you live and someone here can probably help you find the best one.

The chemo will take care of the ascites. I had 3 liters drawn off before surgery and within a week, it was back, plus more.

I have been in remission (aka NED) since March, 2010. Don't give up, and don't move out. Being strong all on your own is not a bad goal, but no one is strong enough to go thru this all by themselves. Take help wherever you can get it. Do not apologize for needing help (or emotional support). This is a very scary thing. I cried all the time for months and months after my diagnosis. Then one day my doctor said, "This time next year, you will have hair again." I was totally shocked. I said, "You mean I'll still be alive this time next year?" (Unfortunately, he was wrong about the hair. He gave me the option of doing a year of Taxol maintenance after my initial treatment, and I could not say "yes" fast enough. But Taxol is the "anti-hair drug." Still....I can always wear a wig. Dying with a full head of hair did not seem like a good option.)

Carlene

habber · May 2011

kikz said:
Habber
I can verify that the chemo will help with the fluid. I had so much fluid I looked like I
was about seven months pregnant which was pretty weird since I was 62 at the time. I had a total of eight liters drawn and I still had fluid, but after the first chemo it was all gone and so was the indigestion and heartburn. What others have said is so true, this is the place to get support and information. Good luck with your treatment.

Karen

Thanks
Thanks for sharing your experience. My hospital doesn't have a support group. I start chemo on Monday just through an I.V. (port couldn't get placed in time) I'll look forward to the positive effects!

mopar · May 2011

HUGS TO YOU
So sorry you are dealing with all of this, and especially alone. Good advice from all the ladies. Definitely let us know where you're located so maybe we can zero in on some info from our own local experiences. Hope you have a gynecologic/oncologist, as they are the best to handle this situation, surgery, chemo and all.

I know it isn't a good feeling to know that those that you've been there for all the time may not be able to be there for you. This is the time for you to focus on yourself, get stronger, get better. I hope you find someone to fill in the gaps for your care and support. It is so vitally important to recovery.

Sending lots of hugs and prayers. . .
Monika

Best Friend · May 2011

sorry to hear!
Hello-
Just wanted to add that you do need to find another form of support other than here. Your husband and sister have addiction problems. I know from the past that addiction takes over and they really cannot care about themselves let alone anyone else. I always thought of myself first. It's not necessarily them trying to hurt you. They just have no control.
You could explain to ur husband about your fears. It could help.
If not, just know that there are so many people suffering from this disease. You really become a group. Especially during chemo. People are sooo friendly. The people that have been doing it for awhile are so willing to help. Ask them anything. Hang in there!

habber · May 2011

Hissy_Fitz said:
First of all, you are not
First of all, you are not selfish in thinking this is all about you, because it is. If your husband and/or your sister aren't emotionally supportive, the least they can do is be there physically because you will need a LOT of help after surgery and to get thru chemo. I hope your de-bulking goes smoother, but I was in the hospital for 17 days and could not eat for most of that time. I had to go on TPN feedings (liquid nutrition administered thru a chest port). When I finally got home, I was weak as a kitten, and of course, I could not drive for a long time.

You need a gyn/oncologist for your surgery. Studies show that women who are de-bulked by a specialist have a better outcome. Tell us where you live and someone here can probably help you find the best one.

The chemo will take care of the ascites. I had 3 liters drawn off before surgery and within a week, it was back, plus more.

I have been in remission (aka NED) since March, 2010. Don't give up, and don't move out. Being strong all on your own is not a bad goal, but no one is strong enough to go thru this all by themselves. Take help wherever you can get it. Do not apologize for needing help (or emotional support). This is a very scary thing. I cried all the time for months and months after my diagnosis. Then one day my doctor said, "This time next year, you will have hair again." I was totally shocked. I said, "You mean I'll still be alive this time next year?" (Unfortunately, he was wrong about the hair. He gave me the option of doing a year of Taxol maintenance after my initial treatment, and I could not say "yes" fast enough. But Taxol is the "anti-hair drug." Still....I can always wear a wig. Dying with a full head of hair did not seem like a good option.)

Carlene

Things are better.
Thanks so much for all of your replies!! I really feel better knowing this is a place to turn.

Husband is still drinking but a big bout of pain shocked him into the world. He's going with today for chemo education and again tomorrow to start chemo..

Did not get a port put in--surgeon was out of town so will start with an I.V. While my gyn oncologist seems good---William "Rusty" Robinson (he plays in the band NED--a group of other GYN Oncologists) But having read that surgery is one of the most important aspects of recovery.

I live in New Orleans and am getting care at Tulane. Even though I am a Tulane employee, I find the whole hospital to be a comedy of errors. So am looking into other cancer centers--I'll have 3 months of chemo before surgery.

I do have a good friend in town who has already been helpful. While I do need to remain aware of the limits of what an addict can give--I also need to bear in mind that they CAN give somethings--especially as Carlene pointed out: Physical support.

Mwee · May 2011

habber said:
Things are better.
Thanks so much for all of your replies!! I really feel better knowing this is a place to turn.

Husband is still drinking but a big bout of pain shocked him into the world. He's going with today for chemo education and again tomorrow to start chemo..

Did not get a port put in--surgeon was out of town so will start with an I.V. While my gyn oncologist seems good---William "Rusty" Robinson (he plays in the band NED--a group of other GYN Oncologists) But having read that surgery is one of the most important aspects of recovery.

I live in New Orleans and am getting care at Tulane. Even though I am a Tulane employee, I find the whole hospital to be a comedy of errors. So am looking into other cancer centers--I'll have 3 months of chemo before surgery.

I do have a good friend in town who has already been helpful. While I do need to remain aware of the limits of what an addict can give--I also need to bear in mind that they CAN give somethings--especially as Carlene pointed out: Physical support.

So glad you came here!
Welcome! You have to come to a place where many of us know and can relate to all that big jumble of thoughts and emotions that you must be going through. Hey you have a famous GYN/ONC, I've seen the clips of the NED Band.

I'm so glad to hear that you have a good friend to turn to. I've been dealing with this disease for 5 years now and I find that it is easier for me to have help from friends than from my family. I probably try to be the caretaker for my family members and allow friends to actually help me.
(((HUGS))) Maria

Just diagnosed Stage IV

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