Need Help

lenjam

A little background. Went to the hospital with shortness of breath and told she had pnuemonia. Her plueral cavity was filling up with fluid making it difficult to breathe. After draining the fluid they came back in and said she had lung cancer. They did a procedure to try to block the fluid from buildig up, and then we were told: no, not lung cancer; lungs looked good. More tests and we're told "female" cancer. Told to go to a gyn/onc. After meeting with gyn/onc, we were told peritoneal cancer. She had surgery to remove ovaries, tubes, omentum and debulking.
After pathology came back they said it was actually ovarian cancer. Mom is in the hospital for the fifth time in 2 months. She's spent more than a month in two different hospitals. She just had her first round of chemo. Carbo/Taxol. First day (friday/sat) she seemed really good. Next day (sunday) not so good. Doesn't seem to be in any pain but her emotions are all over the place. She's very mean and I'm not sure how to handle her. She has no appetite and doesn't want to drink either. Since she's in the hospital they're giving her fluids but I know that's not enough. How do you motivate someone to eat? Is there things she shouldn't eat? Things that are better than others to eat? How to talk to her? What not to say? What to say?
She actually told me that "this is all your fault". Meaning her doing chemo. Said she did it for me. When he got diagnosed she said she would make her own decisions and we all agreed. I never pushed her one way or the other, just found the gyn/onc.

Sorry this is so long...just need some guidance.

She said she didn't know if she could do "this".
Any advice would be greatly appreciated.
Jami

Hissy_Fitz

Dear Jami...
This is such a
Dear Jami...

This is such a rotten hand life has dealt you. You know your mom doesn't really blame you for anything, right? It's just so overwhelming - the diagnosis out of the blue, the surgery, being in the hospital for such a long time, and the treatment. I cried every day for the first couple of months. And I was crabby and short-tempered as a rattlesnake. Cancer will do that to you.

Don't worry about your mom's appetite. They won't let her starve. I could not eat for two weeks after my surgery, so they fed me thru my port. Her appetite will come back slowly. Just let her eat whatever sounds good to her, and don't try and force her to take "just one more bite". Let her eat what she can, when she can. Offer to bring her whatever you think she might like....a milkshake, or something special she used to enjoy. But don't push if she says "No". The chemo tends to crash your hemoglobin, so anything rich in iron is always good.

As for what to say, just encourage her as much as you can. Tell her you know she can do it. Tell her she will get better. Every day will be a little better than the day before. (And that's is the truth.) Tell her that chemo is hard because it has to be, in order to do its job. And reassure her that it IS doing its job - it is killing cancer cells. Every treatment kills more cancer.

This is a great place for support and information. Funny thing, though.......no one wants to be here.

Carlene

Tina Brown

Hi Jami
I am so sorry to hear about your mum. The fluid thing happened to me just the same. My doctors didn't know what was wrong, they knew I had cancer but didn't know where. I was diagnosed with Primary Peritoneal Cancer & ended up having 4 chest drains. I didn't have surgery.

Please don't be upset over your mum blaming you. She is scared and sometimes when we are scared we lash out at our nearest and dearest. It is a huge shock firstly to have fluid around your lungs, to have surgery & procedures like your mum has had and then to be told you have cancer. It will take some sinking in for both you & your mum.

The chemo will make things taste funny so that is why your mum may not fancy food. After about 5 - 7 days that will go & food will taste OK again. Let her eat whatever she fancies - tempt her with all of her favourite foods.

How old is your mum? I was 49 when I was diagnosed last November. Just be there for her as she will need your support. Try to ignore the meanest as she probably doesn't mean it. It is hard for you but your mum will need you to be strong for her. Once she gets used to the diagnosis (there will come an acceptance eventually) you will both find a way to live with this.

Keep us posted on how things go. Much love Tina x

kayandok

Dear Jami,
you are a wonderful daughter to be there for your mom. I'm sorry she is being mean, and you certainly don't deserve it. I read your profile page, and you have said that they were very pleased with the surgery. So, the next step is getting through the chemo. She can only take it a day at a time, and every day she is getting better than the day before. I know I was pretty grumpy after surgery and until I healed up. My famiy members were all very positve and that helped me to get on that track. They didn't rebuke or react to anything negative I said, just listened. Then, slowly I was able to become very positive too. I think it is normal when you have been through so much tauma.

Praying for strength for you and for mom.
Hugs,
kathleen

Barbara53

hang in there
I'm a fellow caregiver daughter, and all I can say is hang in there. The chemo symptoms will get worse for the next couple of days, and start easing off later this week.

You did exactly the right thing hooking up your mother with the gyn/onc. Any blaming your mother does is her frustration talking, and not anything you did. Remind her that she is in charge, and she can change her treatment plan anytime. More than once I told my mother it was fine with me if she quit and we took off for the Caribbean, or I'd take care of her 24/7 after every chemo. She stuck it out.

Chemo plays a mean game with digestion, so don't worry about food right now. I brought my mother every imaginable yummy thing to drink, and she could not refuse cookies n cream chocolate milk. One general complaint she had was that the chemo made everything taste bad. We found that sucking a lemon drop or rinsing her mouth with Biotene mouthwash (available at drug stores) just before eating or drinking took the taste away long enough for her to eat and drink.

My mother enjoyed a remission and is back on chemo now for growths in her chest. I can tell that the fluid is slacking off, which is great. Hope your mom responds as well.

lenjam

Tina Brown said:

Hi Jami
I am so sorry to hear about your mum. The fluid thing happened to me just the same. My doctors didn't know what was wrong, they knew I had cancer but didn't know where. I was diagnosed with Primary Peritoneal Cancer & ended up having 4 chest drains. I didn't have surgery.

Please don't be upset over your mum blaming you. She is scared and sometimes when we are scared we lash out at our nearest and dearest. It is a huge shock firstly to have fluid around your lungs, to have surgery & procedures like your mum has had and then to be told you have cancer. It will take some sinking in for both you & your mum.

The chemo will make things taste funny so that is why your mum may not fancy food. After about 5 - 7 days that will go & food will taste OK again. Let her eat whatever she fancies - tempt her with all of her favourite foods.

How old is your mum? I was 49 when I was diagnosed last November. Just be there for her as she will need your support. Try to ignore the meanest as she probably doesn't mean it. It is hard for you but your mum will need you to be strong for her. Once she gets used to the diagnosis (there will come an acceptance eventually) you will both find a way to live with this.

Keep us posted on how things go. Much love Tina x

Mom stll having trouble breathing
I thank everyone who replied and for just being there. I find great comfort reading everyone's posts and it gives me hope. Mom is 67. Birthday is actually Friday. Not sure how she will be for that.
Today they were going to release her from the hospital but when she gets up she's still very short of breath. She has tubes in to drain the fluid everyday and she's still short of breath. She's very depressed that nothing seems to work the way they say. She had the tubes put in so she wouldn't have to go to the hospital all the time to drain. My dad can drain her at home. They said that would make it so she would be able to breath. Hasn't yet. It's been two weeks since they did that. They're now taking her in for CT scan to make sure that there's no blood clot. I know in my heart she doesn't mean to be "mean". But, she seems to have no fight and justs wants to give up and I don't know what to do or how to help her get that fight and will to live. I have a four year old daughter who is missing her grandma like crazy and that's so hard. She doesn't understand any of this.
Thanks for listening.
Jami

wendybill

Barbara53 said:

hang in there
I'm a fellow caregiver daughter, and all I can say is hang in there. The chemo symptoms will get worse for the next couple of days, and start easing off later this week.

You did exactly the right thing hooking up your mother with the gyn/onc. Any blaming your mother does is her frustration talking, and not anything you did. Remind her that she is in charge, and she can change her treatment plan anytime. More than once I told my mother it was fine with me if she quit and we took off for the Caribbean, or I'd take care of her 24/7 after every chemo. She stuck it out.

Chemo plays a mean game with digestion, so don't worry about food right now. I brought my mother every imaginable yummy thing to drink, and she could not refuse cookies n cream chocolate milk. One general complaint she had was that the chemo made everything taste bad. We found that sucking a lemon drop or rinsing her mouth with Biotene mouthwash (available at drug stores) just before eating or drinking took the taste away long enough for her to eat and drink.

My mother enjoyed a remission and is back on chemo now for growths in her chest. I can tell that the fluid is slacking off, which is great. Hope your mom responds as well.

Checking in
Hi Jami----
I was wondering how your mom is doing. You were both in my thoughts on our moms birthdays--September 3.
Wendy

msfanciful

Hello Jami,
This is a very
Hello Jami,

This is a very hard time for you for sure.

One thing you should understand, this (carbo/taxol) is her first round of chemo. It is generally normal to feel normal the first to second day. Unless she had a severe reaction; however it is usually the third thru fifth days that are the monster days. All I could do was to stay in bed on these days and make life hell for everyone with my crying fits and bouts of anger.

As for her emotions being all over the place, they will be because she's just had a hysterectomy which usually throws one right into menopause (thus the roller-coaster of emotions). It does eventually get better though.

Also, carbo/taxol was a very harsh treatment for me as I've heard for others especially being given to her right behind her surgery. I had no appetite and had to drink things like protein drinks (ensure or boost), jello but nothing with odors or spicy aromas. I would puke everytime. LOL!

What got me to eating again was when my oncologist prescribe " Emend". It's three tablets that you take once a day for three days. Afterwards the nausea wasn't quite as intolerable and I swear I could eat a full-course meal. :-)

Also, I think looking into anti-depressants will help her a bit more with her emotions because I think we all know you didn't and wouldn't ever be the fault for this. We all know that we make the decisions we make for ourselves. She's just in shock, afraid, her whole body is out-of-sync, so she literally is not herself. But it will get better.

I hope this helps some.

God be with you,


Sharon

lenjam

wendybill said:

Checking in
Hi Jami----
I was wondering how your mom is doing. You were both in my thoughts on our moms birthdays--September 3.
Wendy

Update on mom
Mom came home from the hospital yesterday! She went in on 8/25 to have her port put in and was supposed to go home on 8/29. But, with the port getting infected she had to stay in so she celebrated her birthday in the hospital. She said it was pretty good since she was still "here" and didn't expect to be. So, again a hospital stay that was supposed to be 4 -5 days tops ended up being 12. All in all I think her attitude is getting a little better and she did really, really well with her first round of chemo (8/27). She had a little naseau and no appetite but I think that was the worst of it. I'm afraid to be happy that she did so well thinking that tomorrow will be the day or the next day will be the day that she gets all those terrible side effects I've read about. She did have a blood clot in her lung which she's now on Coumadin for. That, in and of itself, is a scary thing. She's now afraid to eat because of that. They told her she has to be on a Coumadin diet. They can't seem to find the right dose for her. Blood levels too high, then too low. She has to go for blood tests every two days to have it checked.
All that's gone on in a relatively short period of time still has my head spinning.
Again, thanks for listening.