you guys are the only ones who could possibly understand

[stars9979]

My mom over the past few weeks from Vectibux has had 0 energy. Shes been sleeping a lot, not eating nerly what she used to. Its become a battle to have her eat half a cup of food.

Tuesday was supposed to be 4th round. Her billirubin came back elevated, and they were concerned when i was mentioning her not eating etc. I also noticed some slight adema in her feet.

They did a direct admit, her one stated we couldn't continue treatment until she was strong enough to tolerate it and we need to get her eating and figure out why her enzymes are elevated.

The results came back, no obstruction or dilation in the liver/billary system, so they feel this is disease related.

Well wedneaday they tried to give her a sedative medication she takes at night in the morning and i chewed the nurses head off. That night my mom was addiment i sleep at home and rest.

which i hate leaving her there, but i have been lacking taking care of myself.so i tossed and turned at home, but slept. Spoke with her early in the am she told me to go back to bed, then again 3 hours later and she was totally wacky and out of it.

Spoke with the nurse who went over the meds she was given, they incorrectly gave her her night medication half of it in the morning.

I am beyond frustrated and livid. We have been to the same hospital 20 plus times its in the records.

So we wasted a whole day to get her walking to lessen the adema, and eating to get her strength up.

I reamed the dr about this and demanded a plan, and he had me feel her stomach, she's highly constipated and dehydrated from the pain meds. So his plan before giving her mironol (drug to stimulate appetite) is to clear her out, and that should helpx because if shes as backed up as he thinks she is. Its probably causing her not to be able to eat.

IVe tried for so long to hold it together to be strong, and i feel like im being destroyed watching her go through all of this. My family is bullshit, her sisters are so involved in their own lives that they don't help out, they occasionally text to ask about her and shes all that i have. My fiance does his best, he holds me and lets me cry it out and promises things will be ok. Which with this new situation, i don't know that things will be okay.

Obviously they want to get her back on treatment or some kind of treatment, i just feel like they aren't doing enough. I had to suggest having physical therapy come work with her to help her build some strength, i had to suggest mirinol a drug to help her eat.

April 4th marks her year fighting this battle. I feel as if from the get go its been uphill. Ive always recorded our onc meetings and clarified we are going aggressively and for curative intent, but at this stage in the game, i feel as tho they just told me what i wanted to hear that we were but that in reality we have just been tossed aside as palliative.

i dont have anyone else to talk to. No one else understands what this is like except for you guys here, living it, dealing with it, fighting it, or taking care of someone who is.

I dont even know what my question is or what my goal of this post is. I think i just needed to get it off of my chest and find people who listen, understand and care.

Im only 26, getting married this year in October, going through fertility treatments now in hopes my mom can experience being a grandma, and gets to walk me down the aisle. I'm completely terrified where we are at right now and what comes next. I need her.

[midlifemom]

I am so sorry you and your mom are going through this.
Regarding the incorrect meds in the morning, review with the doctor, I believe he has to correct the order. The nurses only get to follow the orders that are in the computer. You may want to review all the med orders at that time. You can also ask to be alerted to any med changes.
It sounds like you're very involved in your mom's care. She is lucky to have you. But you do need to take care of yourself as well.
Let us know how it goes.

[Val*pal]

You are a wonderful daughter to be so involved with your mom's illness. I'm so sorry that you and she have to go through this. I know that hospitals can be frustrating places since there are so many health care workers involved and things get overlooked.

One suggestion I do want to make is that you not hound your mom about not eating. If she has no appetite, she has no appetite. Years ago my mom went through something similar and I was told by her physician not to make an issue out of it since the patient has no control over it. It was good advice and came in handy when my husband lost his appetite. His family kept bringing in tons of food to "tempt" him and I put a stop to it since it made him feel so bad, like he was letting them down. It can be hard to accept, but the body knows best.

(((hugs))) to you and your mom.

[teachpdx]

I'm sorry for what you and your mom are going through. When I can't eat I find drinking works - like yogurt shakes, etc. They are cool and easy to get down when chewing is an effort.

[justin case]

I live close to Houston ,Texas. There is a shortage of heath care professionals in hospitals. My surgeon told me after I had problems with a nurse, that she had been removed from the staff, BUTT she could go to the next hospital, and be readily hired, as she had credentials. NOW, isn't that scary
Michael

[Stanfordmom]

Stars,

Really sorry to hear what happened to your mom. I hope she gets better soon and can continue with her treatment.

you are such a great daughter, your mom is lucky to have you by her side. Being a caregiver is so stressful. please take care of yourself, too.

having you and your mom in my thoughts and prayers.

Sha

[stars9979]

Thanks guys. It has been a trying process. Meeting with the oncology coordinator today, we walked around the door and in like no time managed to be in one of "those" rooms the rooms where there's chairs, tissues, and a door. The bad news room.

he said i didn't look well, i have lost around 60 lbs since he saw us last last year, and he said i need to be taking care of myself, and i need to allow myself to take 20 minutes or two hours, some time in general for myself everyday. I have to let thst be okay. My mom wants that for me, she doesn't want me to not take care of myself. Which is true. I ate a banana today, and i saw two people i really needed and spent a few hours sway to allow myself to break down to relax and kind of numb it all for awhile.

And he basically said if her levels don't improve there wont be options, it would be more toxic to give any type of treatment. He said hes not saying we are out of options right this moment as her oncologist is coming to see her in the morning, but that it probably will come to the point where there is nothing left

He mentioned skilled nursing facilities and rehab centers but also mentioned hospice i great and has more capabilities. It would stop treatment but they could potentially help her get back to where she needs to be, in terms of getting her stronger, and eating, and bowel moving ro lessen the billiruben in her system. Its possible to go into hospice and come out and continue treatment.

I thought it was a bull$#!+ line to get me to accept hospice but i verified it with a friend who's mom lost her 4th battle to breast cancer she went in and out of hospice 3 times.

I just so not know what to do, i feel like most a skilled nursing facilities are a joke and they treat you as a number and just help you die. Scuse my frankness here but everyone that I've seen jn skilled nursing doesn't really progress.

At the same time, my mom wants to be home, i don't blame her. But she has adema in her feet and legs and we have 5 steps down to my apartment I'm terrified once i get her down i wont get her back up.

Im terrified this is the end. Im angry. Im sad. Im distraught.

After our talk i drove 30 minutes to my fiances work and cried and hugged him yelling that i still needed her. Yelling that we have an october wedding we are doing fertility treatments to make my mom a grandma what shes always wanted. I was a blubbering mess.

Then i drove over an hour to see my best friend. She cant relate but told me to reach out to another friend who lost both of her parents. I fell asleep on her couch for a while then did reach out to that friend tonight and she was really actually helpful.

i just kept saying this can't be itx we haven't exhausted all treatment options we still have things to try.

so for now we keep up the bowel movements we try to keep her eating which they're giving her mirenol to stimulate an appetitex and sending up rockin refuels, those are the only thing besides carnation instant breakfast she likes.

im trying not ti preasure her into eating, unlike my aunt who says "come on eat for me" i simply tell her to try to eat what she can, and remind her her plate is there when she gets distracted.

Im 26 ywars old, shes all i have, this is the most difficult thing in my life. I al praying, hoping, begging, swinging chickens, that her levels again drop to normal which they have been, so there can be something else. We had been talked to about a clinical trial checkmate 151 or 142 some sort of number combination which was really promising, plus there's tons of other chemo and or options. We just have to get there.

Any positive thoughts, vibes, prayers, and chickens our way would be appreciated.

[LisaNH]

I'm so sorry that you and your mom are going through this. I lost my husband to colon cancer last June and my mom to lung cancer in August. Most of the time I just felt so helpless because nothing I did could heal either of them. But as caregivers all we can do is provide support and love.

With regard to eating, both my husband and mom struggled with it. I tried lots of things, but for a while I was able to get my mom to drink frappes made of ice cream mixed with Boost. Lots of calories and the Boost provides some important nutrients. My husband had a lot of vomiting issues, so for him it was less about wanting to eat and more about being unable to. What worked best for him, was to have a plate of snacks he liked available so he could "graze" all day. Unfortunately, they do reach a point where the body just refuses food and no amount of begging or pleading is going to get them to eat. Its really hard, but all you can do is love them at this point.

[ranger]

I feel for you, Stars. I'm sure you're a huge comfort to your mom, as a friend, a daughter and a health advocate. I'm going to be very forward and suggest you let the fertility go for now. Sounds like making your mom a grandma will be spreading things too thin. You may not be able to put your life in high gear to make sure your mom sees it happen, but she knows who you are, and I think she probably will feel settled that she raised a wonderful daughter for whom things will work out, no matter how long she's there to see it.
If this post disturbs you, please ask the moderator to delete it, I mean only good, from the vantage point of the mother of 2 daughters with no kids.
AMY