Need help; I'm totally clueless!

HunneyBear

This is my first time I have been on this website, mainly because every time I do a search for Breast Cancer information, I never want to look at it... so this is a bit awkward coming forth with this personal information that not anyone knows.

First off, I love my mother dearly. She has taught me so many great things, but she has struggled with negative decisions in her life and even though I'm grateful to a degree that I know her, these past few years have been really difficult.

whilst I was being treated for a chronic illness that I have and am dealing with, sometime early last summer, she discovered that she had Stage II BC, went through a mastectomy and had scheduled to be on chemo for about 18 months. she started treatment quickly after her Mast. and her mannerisms started changing for the worse, though before her diagnosis she had a terrible temper, the chemo seemed to have an effect on her mentally, and she started treating my family terribly even though we were there to help her 100%... my father would take her to the center for her treatment, but if he couldn't she wanted to drive herself. So she would set up the appts, and not show up, not return the MD's phone calls, and they started getting a little concerned. After going to one of her treatments, the staff at the hospital told her that that was going to be her last treatment. she later explained to my father that it was because the treatment had caused irreparable damage to her heart and they had to stop after just 5 rounds.

they told her that she had more than a 60% chance of the cancer coming back in the other breast within a short time... which it now has. Lately, she doesn't move from the couch much other than once or twice for something in the kitchen or to use the ladies' room. she spends hours just being sick to her stomach even if she just smells the food, hair growth has ceased, and she doesn't speak to anyone anymore. She has pretty much denied all treatment, and I don't know what to do. Her condition has gotten a lot worse, and I have no idea what's going on. My family doesn't know what to do. She's so young, but she's just given up and it completely breaks my heart to just watch this happen and I cannot help her... I can't save her. I love her so much. I don't know how to act, what to expect because she won't tell anyone...
in the past four months, she has seen one doctor, and she was basically in his exam room for less than ten minutes and that was the last time she has been in contact of a doctor..

It devastates me that I have not been able to talk to her since fall of last year. But I see her every now and then and she looks less healthy every time I do... I'm praying for strength and guidance but I just feel hopeless and clueless... If someone could tell me what to do or what to expect from this situation that would be greatly appreciated...

thank you

dlb823

Hunneybear, it sounds like your Mother might benefit from some psychological counseling with someone who understands breast cancer and the emotional havoc (like PTSD) it can cause.  I'm guessing you might not be in the US, and I'm not sure how treatment centers work if you're in the UK, for example,  But in the US, the larger ones have psychologists or social workers on staff who can be very helpful.  Perhaps you could contact someone like this and either set up an appointment for your Mother, or go yourself if she won't go, and see if they can give you any suggestions.  I agree with you, it sounds like your Mother is suffering both physically and emotionally, and needs help with the latter to get her head & heart in a place to maybe look for a new medical team that can figure out treatment she can tolerate.

Heart damage, by the way, is usually attributed to Adriamycin, one of the stronger chemo drugs, as well as possibly Herceptin, which she may have gotten if she's Her2+, but which I don't think would cause heart damage in just a few weeks (not sure).  But there are many other chemo drugs available that don't cause heart damage.  Perhaps your Mother would benefit from a new medical team -- if you can get her to see someone new.  Good luck ~   Deanna

37antiques

Hunnybear, WHY does she have nausea all the time if she is not in treatment?  To my mind, that is a red flag that something more is going on. 

I'm sorry you and she have not always seen eye to eye, I had the same situation with my mom and it is very difficult, especially now that you all are dealing with this as well.  I understand your mom not talking, seems she has let herself be consumed by the depression of it all.  That is very easy to do, and I shudder to think of just how many women are doing the same thing and do not have the awesome support we have found here.  The will to live is the great thing, and it doesn't sound like your mom has that anymore.  It is a horrible shock to know what you will die from, the lucky ones realize it doesn't have to be today or even close to it, and others give up before they begin.  This disease takes so much from us and out of us.

We would all encourage her to try another treatment, there are many more choices now than there were just a few years ago.  Does your dad have access to speak to her doctors?  Can he find out what is going on?  Did he go with her to that last appointment?  Perhaps she received more unwelcome news, and she just didn't share it with anyone. 

Granted she isn't speaking anymore, but the first thing I would do is talk to her.  Tell her you love her, tell her it hurts you to see her like this, tell her there are options available out there, tell her if she didn't like the last doctor you can find another one...maybe if she sees you being proactive for her, she will draw on your strength and find it in herself to take care of herself.  If it came back in the other breast it is another primary, not a metases, not a local recurrence, and the odds of beating it are very good.  Whatever this new thing is that has started the nausea could be anything from nerves to a spread.  And even if it has spread there is treatment to put it in check and stop the pain.  I wish you and your mom the best, I hope she finds it in herself to fight...she sounds like she had a very strong personality, and I hope she uses it to her advantage now.  I'm glad you are being an advocate for her, you and she are both in my prayers.

((Hugs))

HunneyBear

dlb823, thank you for your suggestions. When I was younger I do remember she did eventually get help for her mental problems and was put on some medications that helped. The only problem was that once she felt better (and during that time, she's had dramatically changed her behavior for the best), she thought she could stop the medication because she was well enough, that it might have just been a phase... but as my father and I know, she's always acting like a bully to anyone and at the beginning of her illness she negatively took advantage of that.

37Antiques, I definitely agree with you... She had one of the best oncologists we know of... I don't know if he's well-known, but he wrote the book "so you failed your breast exam"... He was a very generous and comforting doctor, and the center she went to was filled with very kind-hearted people.
She's always been know to be late to all of her appointments, so the head nurse would either call me or my dad to see if she was coming, but I guess her behaviour was unacceptable and was pretty much unreliable so they had her sign a waiver. But I think when my parents discussed this after the fact, she said that one of the treatment had to be stopped early because they had noticed signs that her heart was getting worse. When my dad had met with one of the doctors, they had mentioned that if the cancer came back, she would not be able to get any kind of chemotherapy or radiation, but at that time her cancer had gone away for the time being, but she had a 60% chance of it coming back within two years and it was extremely agressive.
After she stopped answering any of the hospital's phone calls, for a while, my dad had stayed in contact with the head nurse that was very worried for her and said if she didn't get it checked, that there could be nothing left to do. but that they had done another exam that showed more cancerous cells in her other breast. The reason why he had stopped talking to her about how my mum was doing was because she had called the nurse personally and scolded her for talking to him.... so that to me kind of tells me that there's something more that is going on here... alongside the cancer... and the nurse was very worried about her.  
The last appointment she had gone to, the one that lasted only a few minutes, she had only seen her PCP that she has seen for a long time; my guess is that visit was only to get a signature and to pick up a triplicate Rx for the pharmacy... I don't even know if she physically even saw the physician.
She does have other physical problems. Even though she is very young, she has been taking more pain medications than the amount that was offered and prescribed for her, for her joints for as long as I remember. She has always made unhealthy choices, and, having an auto-immune disease as well as organ failure, I know what it feels like to be very sick and not even be able to get up... but I also know that it's very important to eat healthy foods, try to at least walk a little bit and stay positive... but she does none of that... She doesn't talk to my sister... she stopped talking to my dad...
I praying so hard for the courage to talk to her and tell her that it not only hurts her, but it hurts this whole family...
could you tell me what the other symptoms are that it could possibly be? Maybe there's something my dad can do or say to one of the staff at the clinic if we had an idea of what it was...

thank you so very much for responding to my post.... I pray that the cancer won't be a problem anymore.... I feel really blessed to have seen this site and see how much support and strength everyone has.

37antiques

Gosh Hunnybear, it could be so many things.  I am no doctor, but some things come to mind, maybe some of the other girls have some ideas too.  Since her hair has stopped growing too, I would first think of stress.  And this is stressful.  It could be nerves/stress, could be an upset like acid reflux from the stress or too much asprin or painkillers, it could be a gallbladder issue, It is so hard to know without getting it checked out.  I would try something easy first, like limiting asprin or switching to an NSAID to see if it helps, or notice times - is it after she eats or drinks?  Is she having any pain or is it only nausea?  If there is pain when does it happen?  Does she ever get a fever?  Is she bloated? Does she have jaundice?  Does she sleep a lot more than usual?

Maybe the easiest thing to do would be to collect your observations and call the doctor, let them know what is going on.  Tell them she won't agree to be seen, but the nausea is worrying, and is there anything they could prescribe to get her going a little bit or reduce the stress of it all?  And if they did prescribe something, I would tell her it's a new painkiller, or (personally) crush it up and drop it in whatever she drinks or the jelly on her toast, then see if it helps at all.  That's probably not very sound advice, but desperate times call for desperate measures.  Perhaps the doctor could find a visiting nurse to come and see her, just to check her over, get her vitals and pass their observations on to the doctor so you have a better idea of what it may be.  I'm not sure where you are, but check and see if your father has the authority to have her admitted to a clinic or hospital for treatment since she is in an unresponsive state, then you would know what you are dealing with and maybe gain enough time for an antidepressant to kick in and help her out a little bit. It seems things are getting to a critical point with her mentally, so I think it would be very wise to call anyone you can think of that can help at this point, or even guide you in the right direction.  Find some way to bundle her off to a facility for care, there is no reason she should be allowed to make decisions regarding her health anymore, since she is doing her best to neglect it.  This is such a burden for you and your family, illness is enough to deal with, especially since you are dealing with your own health issues.  I pray that you and your family can find the courage to go against her wishes and do what is necessary for her.  Please remember you have over 93000 people holding your hand as you go through this, take courage from that, and do what you know in your heart is right for her care.

((Hugs))

HunneyBear

Those are really good ideas.. I don'tknow much because I only get my information from my dad, and only see her every now and then.. it's sort of hard to explain. But it seems like most of the time, she eats and drinks something, and within a little while... anywhere from 10-45 minutes. She'll spend countless minutes vomitting what she had just taken in. She is very pale, and hardly uses the bathroom. It seems like she has been in pain more often nowadays, like cramping pains.. and since she's taking so much medication to maybe mask symptoms of something more serious, it makes me and my dad more worried because the pain is so bad that the medication isn't helping anymore. but she does take a lot of advil, acetamitaphen, muscles relaxers, vicodin, dilaudid, and fentanyl, which, I know taking the vicodin for as long as she has been has not helped her liver *at all*.
She is pretty pale, really gray, and can hardly stand up. very tired all the time. and sleeps more than usual. And has been sleeping MORE than that lately. Everything has gotten a lot worse in the past couple of weeks. She is pretty bloated, I think, from my experience with kidney problems, that as much as she is drinking, that she should be urinating more than she is. but usually we only notice her going to the bathroom *maybe* once or twice a day.... if that.
How can you tell if someone has jaundice, like yellow-colored nails, eyes, maybe skin, right? or do I have that confused with something else?
Oh yeah! My dad and I have been thinking about how, if it were possible to have her taken to be cared for in a full-staffed medical facility... but we don't really know how to go about doing it and even if it were possible, how to convince her that that would be the best option posible, for her as well as the entire family.
Thank you so much for your guidance. You've been a really big help... I really appreciate your ideas... it's always better to have fresh eyes when it comes to these sort of things... It means a lot to me to have help like this...