Hello. I am new to all of this.

Questions_77

Hello. I am new to all of this.

Questions_77

Hello,

       As I said, I am new here. Five or six years ago, my mother had a lumpectomy. I am 23 now, but back then I didn't know much of anything about what was going on. This is in part because my mother and father did not communicate anything but the basics to us--and very briefly. As a matter of fact, not only did I think the lumps were benign; but in short order I virtually forgot that she ever had a lumpectomy in the first place.

Well, it turns out that after that, she refused to communicate any information on treatment or progression to any of us--by proxy giving most of our family (extended--it is not clear how much my father knew) the impression that every thing had gone away. In reality, she was in no position to know, because she decided not to do any follow-ups whatsoever. She (now) says that she went on her own to research radiotherapy etc. but decided that she couldn't go through with it (she cited that her tour of the cancer treatment facility--where she would have had to undergo radiotherapy--was cold and unsympathetic and scared her away. It did not help that a radiotherapist "friend of a friend" told her that he "would not put his own father through that".). 

She turned instead to alternative treatments focused on diet--although I do not remember much of a regimen back then.

Her biggest fear was knowing the progression of cancer. It is almost as if she did not want to face it anymore after that.

Well, it came back. Her breast actually began growing in size about a year or two ago, but I was away at college (unable to return for holidays) and that is when I began to hear stories about her weight and problems with pain etc.

At one stage she was unable to walk. 

Up to that stage I was fully unaware that the cancer had returned.

You have to understand that she would not even say the word "cancer". She would not. Literally. She would say "it" and try to get me to deduce for myself that "it" was the cancer that she had had years ago; and I kept pointing this out to her.

(It was hard for me to say as well). 

At this point, she refused to go to the doctor--any doctor; even though I begged her. She would say that she was "gaining weight" and "feeling better", but she could never tell me how much she weighed (over the phone). In the background (nobody seemed to want to communicate this with me), she was begining to have eye problems and had had an MRI that I am yet to see. I now understand that it appeared to show metastasis in the brain.

She went to a "naturopath", but was unable to tell me of any benefits of the treatment whatsoever (she later said--and I believe her--that he helped the pain in her breast go away). I, on the other hand, was begging her to go to a doctor, since cancer is an empirical thing that is monitored empirically and that she needed to measure progress in terms of size and weight and metastasis and blood tests etc. I told her it didn't matter how she "felt", and that "feeling" had almost nothing to do with progress.

At one point I did not even care if she rejected traditional medicine, but wanted her to still monitor it and not assume it was okay based on vague (and maybe even unrelated) factors such as "feeling" and "no pain".

I also told her that cancer is often painless unless it spreads to the bones (I had picked that up in a book somewhere in life before I even cared about cancer). Little did I know what it really meant in our case.

A year ago, two of her vertebrae collapsed in the early morning one day--we know that now because we did an X-Ray about four weeks ago that shows that L2 and L3 have fused. She refused to go to the doctor then--even though she was now unable to walk and says she felt a tingling. She was unable to walk for months after that. 

All of this information (about her inability to walk--not the night collapse; which I found out about a month ago) I got second-hand from my siblings, who did not seem to know what was going on.

She can walk now, but she is unable--of course--to straighten out her back. It is very uncomfortable--althought the pain is gone.

She also cannot raise her arms above her head. She shuffles along with a cane. 

I am trying to keep her mobile.

By the way, the only reason she is walking is because a friend of the family came and told her that she needed to get up and begin walking and "not just lie there" (and proceeded to go out and buy a cane for my Mom).

Nobody told me that at one point (in the time before I was finally able to return home) she was in so much back and hip pain, that she would cry out constantly (as you can probably tell, she refused painkillers). Thank God I was not there to hear that, because I would have flipped out.

To make a long story shorter; I will tell you two things:

1. I was finally able to get her to go to a doctor who referred her to an oncologist. (I go with her, which seems to make a difference). She is on Tamoxifen (miraculously) and will likely start Zometa soon. The cancer has almost certainly reached her lungs, liver and maybe pancreas. i have no information on staging from the oncologist (although the referring doctor said she appeared to be late stage 3 or maybe even stage 4 from his external observation).

2. I am mad as hell.

I cannot explain to you how I feel sometimes.

Nothing is for certain, but I cannot help but think that a little (or even a lot) of burning (radiotherapy) a few times a week for six months five years ago, would have prevented a lot of excruciating pain and debilitation today. But my mother seemed firmly unable or unwilling to understand the concept of ranking pain.

I am also mad at all these people who seemed to have sat around and did no persuading at all. The siblings who were home are younger (teens) and not very persuasive--for a host of reasons. And my father has some weird beliefs that I get mad thinking about.

Then I am also mad at the "naturopath" (a family friend to boot) who--though he has never cured anyone of cancer in his life-- wouldn't be honest with my mother and tell her to go see a doctor--even though she was visibly deteriorating (several dozen potions, fad vegetable diets, and "heat treatments" notwithstanding).

 I could go on and on, but I don't want to bore anyone.

I am only 23. My mother is 51. I am young and angry I guess, so pardon me if I seem a little dismissive about some ideas.

I am open to learning. 

I must say this in closing though:

In looking for help, advice and information on the internet about cancer, I was struck with the horrible feeling that my mother was probably the only person in the Western world to ever allow her cancer to progress to this stage without going to even get treatment (much less a check-up). Every bit of advice assumes that people who had cancer took the normal route one does when one becomes sick. Anyways, it may not be true, that is just how it feels to me. It was a dreadful feeling.

Am I wrong? Can anyone relate? 

iodine

Hello questions, I had written about 6 paragraphs and my 'puter must had disapproved of what I said and blocked up.  So, I'll try again.

One--you have every right to rage at the world and at your mom, just don't let her hear you, but you know that.

two--she is not the first person to live in denial and want to stay there.  Nothing will move most people from their stance of refusal of treatment if their whole body and mind is made up.  Unreasonable fear cannot be changed by logic.  We have had several people on these boards and a couple have been helped and some have not been helped.

three--I read that you accept no responsibility for your mom's present condition---good.

four--please try not to lay responsibility on the rest of your family either.  I know that's hard to do, but keep in mind that Mom is 50+ and seem hard headed and to have made up her mind. 

five--I'm glad that you've convinced her to go to a doc.  I am glad, as I'm sure you are, that she is in no pain. 

six--Please come here as often as you wish to ask as many questions as you like, you are welcome to post on the main boards, like newly diagnosed, where you can get more "traffic" and more ladies to respond to you.

You are facing a huge task in the care of your mom, and we'd like to support you as much as possible while you are home.

Perhaps you can get the care going and then return to your studies, where you belong.  You family can be taught to continue your mom's care once they are educated and given some backbone and get in the habit of attending the onc. appts. 

Please start allowing them to take over some of these responsibilities so your mom will listen to them as she does to you.

Hugs, as a mom, I think you are a wonderful daughter!

Questions_77

Thank you so very much, iodine. I really appreciate it.

These are uncharted waters for me.

My Mom is only 51 and I think that is too soon for her to die. I want her to have many more grandchildren and see them grow up (she has one, but she has not been able to meet him yet). 

Thank you for your words of encouragement.

P.S. I am her son.

I was afraid I wouldn't be able to post in any other forum. 

badboob67

Questions,

I can understand your anger and fear. We all deal with things differently, and your mom must have felt like she was doing the right thing. None of us makes these decisions thinking they are the wrong ones!

I used to have the "if only" thoughts; I went a number of years with doctors dismissing symptoms that turned out to be metastatic breast cancer. I found out about the cancer and mets to the bones at the same time--at age 38. I had a doctor dismiss a lump and numerous other doctors tell me my pain was all in my head as they prescribed this antidepressant and that. The only problem with the "if onlies" is that dwelling on them will not change things. Dwelling on the mistakes of the past really just fuels anger in the present.

I will tell you that there is much hope for metastatic breast cancer; there are many treatments available. I hope your mom can be convinced to avail herself of all that's available to her. I also wanted to add that there are plenty of women that did everything they were "supposed" to do after an initial diagnosis of bc--lumpectomy/mastectomy, chemo, radiation, hormone therapy --and they still ended up getting metastatic cancer. There is no guarantee that had your mom done the traditional treatment that she wouldn't have ended up with the same issues.

Try to forgive your mom and family members. It is so hard, I know. The best you can do now is try to be supportive and keep the lines of communication open. Perhaps your mom can sign a release with her physician that will allow him/her to speak to you about your mom's condition. I have signed a release so MY mom can get information about me.  

I think I would be plenty angry if I felt like my mom had hidden something like this from me. I would also be angry if she chose what I believed to be the "wrong" treatment. My anger would come from fear--the fear of losing her. I hope that you are able to talk with your mom and let her know how concerned you are. TELL her how afraid you are. Tell her you want to help her do whatever it takes to keep her around as long as possible. Tell her you forgive her! She may have been thinking she was doing everything she needed to and didn't want to burden her children. I struggle with just how much I should tell my children about my condition.

I am so sorry you all are going through this. Please, feel free to post whenever you feel the need. That is why we are here.

(((HUGS)))

Diane 

Shirlann

Hi honey, of course you are angry.  Mad at cancer, mad at your mom for not doing "everything" she could, mad at the world.  Perfectly understandable.

But you must understand that, much like your mother, some people cannot even say the word.  They are just terrified.  And the medical profession cannot legally, "make" her do anything.  This is not allowed legally.  So getting mad at them is useless.

Now, what it sounds like is metastasis.  This is not curable at this stage.  Also, to be fair, people have this happen when they do everything they can, cancer does its own thing, and sometimes cannot be stopped no matter what.

But the thing now is, stop being mad.  That is not helpful.  Your mom made her decision long ago and as we have discussed, this may or may not have made any difference anyway.

Now your job is to keep her as pain free and symptom free AS SHE WILL ALLOW YOU TO.  It seems unfair, but she cannot be cured.  She can sometimes, live a long time.  But only if she is willing to do what the oncs want her to do.  She may want this, she may not.

So just love her, respect her decisions, it is her body and her life, and as much as you love her, this is her way of dealing with this.

I am so sorry, I know you feel betrayed, but for some people  the fear is so great, they just cannot get around it.  It is sad, I had 7 weeks of radiation, worked the whole time, did not burn at all, and was 63.  But some people have very bad experiences.  No one can tell you what she could or should have done, and even if they did, there is no guarantee that she would be any better off.

So just love her.

Gentle hugs, Shirlann 

Questions_77

Hello!

My Mom recently passed away (June 5). I would liek to thank you all for your support. She ade it two years and I thanks God for that.

dianadarling1

Hello, I am  also 23 and my mom died of Breast cancer in 1988, I am still angry that she had both her breasts removed and still passed away soon after because of a doctor's early misdiagnosis that her lump was "nothing" to worry about. I really hope that you can heal throught the support of others around you because to be blunt yet honest you will never forget this but that is good because your mother is worth remembering and I refuse to forget my mother who has been gone for 20 years. Bless you, and be strong.

hollyann

So sorr to hear Questions_77......What is her name and we will add her to the Angels List..........Also please Pm me your addy so I may send you a card .......i know how hard it is to lose a parent...I lost both before I was 9........

Questions_77

Hello Lucy,

               My Mom's name was Virdelle Legall. She was 52 years old. Thank you everyone for your support!

Route53

We are sorry to hear about your mother.  Unfortunately there are many groups of people similary to your mother eitther gerationally who like to avoid hospitals or modern health care, or just are are adverse to the thought that something is wrong with them.  20 years ago, my own mother-in-law did not tell my wife that she had cancer and my brother-in-law who was a teenager at the time lived in the same house and never knewhis mother had cancer and surgery.  He just thought she was sick in bed.

Unfortunately, as a child your mother does not leave you with a recent fond memory, but hopefully you will be able to take a lesson from that experience to apply to yourself and others to help them seek out treatment so that the disease can be fought at an early stage.

You are a good daughter to have been on here for 2 years helping to care for your mother.

 Are prayers are with you and your family,

Erik (Route53)

http://route53.wordpress.com

katie2279

I am sorry to hear about your mother.  I started writing a post to your original message not seeing it was started back in  2007. ( I am new to the board and just navigating around)  I am glad you did get two years with her and you sound like a wonderful daughter.  What I was going ot say in response to your original post was that your mother is not the only one that would refuse medical treatment, doctors, etc.  My mother was just diagnosed a month ago stage 4.  Come to find out she had found a lump two years ago but never said anything to anyone.  She quit going to doctors in the 80's.  She new what it was but didnt do anything about it.  She finally go so sick that we all new something was wrong and made her go.  At first she was refusing treatment but thatnk god her mother talked her into getting care.  She says the only reason she is doing chemo is because we want her too.  So I can relate to your pain that you felt on all those issues.  My family is very closed and non communicative like you had said.  After this came out about my mohter we finally learned that my great grandmother and two great aunts all had bc.  My mom is only 54.  So I just wanted to tell you how strong of a person I think you are and a wonderful daughter!!