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(2 replies, posted in General Discussion)

Just wondering, and I can't help but get upset.

After reading The Partners for a Cure website, it is sponsored by Pfizer, and Astra Zeneca. The article only spoke of financial mergings and not about what RESEARCH and developments have/will take place. I am just frustrated because my mother passed away from Bile Duct Cancer and I don't think the chemotherapy helped at all. I think it just made her worse and go downhill faster. She was in Stage four when they found it so there wasn't much hope. But what I feel is that there HAS to be some treatment other than chemotherapy, that can be developed. Pharmaceutical companies are making so much money on a drug thats a monopoly. I just wish everything wasn't about money and marketing charades, but RESEARCH AND RESULTS.

Sorry to have gone off on a tangent, but this terrible cancer needs a cure.


Liz

Hello to my new friends,
  Hope everyone is doing as well as can be expected. I wanted to talk about some family issues as well as the aftermath of my mothers passing.

  My older sister and I are VERY different. When my mother was diagnosed, my (27 yr. old) sister decided to take on the mother hen role. We all, including my mom wanted her at home, and we would share the duties are taking care of her while she was bed-ridden. As she lay in our parents room, my sister would read books trying to find high-alkaline recipes, giving my mom cantelope, acai berries, watermelon, anything that my sister thought would, "save her life". My mom really didnt have an appetite.

With her "bile bag" (As we called it, and my mom and us all made jokes about the bag on her side we had to drain. Does anyone know what Im talking about?) We had to keep track of her bili-rubin levels and write it down. It was quite gross and whoever had to drain it was gutsy. I didn't like doing it, and my mom knew and she said it was fine that my sister did it. My sister seemed to WANT to take on the roles of nurse/mother/cook!

If I would try to do somthing, my sister, would say, Liz you're not doing it right! etc.. etc...

Also, my mother had to have TPN through an IV. We did this at our house and had to be taught how to give it to my mom. It was a milky-white bag and we had to heat it up before giving it to mom, so it was a process. Everything my mom ate tasted acidic to her and she could only  have about 2 bites before saying she didnt want anymore. That is why we had to give her the TPN.

I was in my sophmore year of college at the time. I had been commuting, so it worked out that I was able to come home after school and be with my mom. I asked her if I should stop going to school and was willing to do so, but my mom told me to keep going. And we had a special connection. I knew she knew I didn;t want to stop going to school and she enjoyed hearing my stories about what I learned during the day. She often said, "I just enjoy hearing about what you did today.." It made me happy.

The next room over, my sister and father cringed at me, because they had been home all day taking care of her. They would give me dirty looks and say, "Liz, now YOUR going to stay home the rest of the night and take care of mom, WE'VE been home all day!!!

The guilt they put on me was awful. I hated the way I felt. One day, I came home with a cold ( which meant I had to wear a mask and gloves, the risk of mom getting sick was too high). My sister said and I quote, "Liz, you probably are faking it just so you don't have to take care of mom"..

This went on for so long! Thinking about it now, makes me so angry at my dad and sister. They were like 2 peas in a pod, tag teaming *but also doing a good job of taking care of my mom* But making me feel like absolute shit!

I did what I was good at! Reading stories to my mom, adding voices to the stories... she laughed and smiled. I would watch TV with her and just be "sunny self" which she said.

My sister also left a cruel note on my bed one day that said, "You are going to regret this when Mom dies, I don't know how you can go to school while mom is dying!" And I couldnt even read it. I can tell you this, I didn;t know at the time if My guilt was real or not. None of this came from my mom, was it because she didnt have the energy? I felt so trapped and sad..

I went to a psychologist a few times and brought the note with me and she told me never to look at it, it was so awful. I knew deep down it was not true. But when the only people you are about to have left in your family are telling you that you are selfish, not a part of the family, useless... What are you to believe?


Mom had a visiting nurse that came over, she was so nice, also a reiki lady whom my mother enjoyed thouroghly. And I knew while I was gone during the day my sister would tell them I was never there... And honestly it seemed like a whirlwind of activity went on that it made me feel out of the loop when I got home at about 5:00 pm.

I would come home and my mom would have a fever. Conversation with sister would go a little somthing like this:

ME: When did mom come down with this fever?
Sis: About 12:00 this afternoon, maybe if you were home you would have known.
ME: Its really not my fault that I am at school during the day, I am in a different place right now, I'm only 21 and mom wants me to go to school.
Sis: You know mom isn't going to tell you to drop out of school, you should know better, I would NEVER be able to go to school knowing mom is here dying, you'll see it when shes gone.
ME: (....WALK AWAY TO MY ROOM)
Sis: That's right Liz, go be selfish in your room...)

END

This went on for about 6 months. Trying to know the moral difference of manipulation and reality was hard, but I know whats right and wrong.

Now, 2 years after my moms passing,  my relationship with my sister is not the same, and never will be. We've talked about the things she said to me, and she says, "Liz you know I was stressed out at the time and said things I didn't mean. I WAS THE ONE WHO WAS AROUND MOM ALL THE TIME" NO ONE SAW WHAT I SAW. I WAS THE ONE WHO CHANGED MOMS DAIPERS WHILE YOU WERE AT SCHOOL"

So obviously she still can't let it go.
I feel like my relationship is fake. And granted my sister is a paranoid hypochondriac and anxiety ridden and I never even explained that, that is a whole other story.
I can't even be around my sister because we just butt heads. Even my dad makes excuses for her and doesnt see my point of view the way my mom would have.

I am not looking for anyone to tell me that she was wrong in what she said, I already know that. I don't regret anything about my time with my mom. I just have this terrible relationship with my sister from the time of my moms passing and I just dont ever think it can get better. For someone to say such hurtful things to me and then blame it on stress. I can TRY to forget but I cant forgive.

It makes me so mad at NOTHING (WHO CAN I GET MAT AT???) to think that this evil cancer took away the one person in my family that could see through everything. Who could understand all of us and how to make our family work. Now I am left with 2 irrational people and I am prospering with my life and all they can do is make me feel guilty for graduating school and going on in the right direction. My sister has no job, and my dad can't afford to keep the hot water turned on.

The love of my life, the man I am going to marry is the only one who understands me. He is so nice to my dad and sister when I cry to him about how they made me feel. He offers to take care of my  dads house and plant flowers the way my mom did.
He is amazing and I am so thankful to have him. His mom died of a bad blood transfusion when he was 9 years old in 1993.


It is just a whirlwind of a change in my life. I wish things could have been different, and why her?

Im sorry if I have dragged this on, but I have a newfound respect for you all and feel like i can write to you.

Thanks for listening.

Liz

Thank-you everyone for respnding to my message. I feel so happy that you all took the time to write to me!

I just wanted to personally thank Jeff for the PS" you had written to me regarding my feelings toward my friends and my personal growth from this experience. I re-read it a few times because it really meant alot to me.
It is so funny how total strangers can understand you more than the people in your every day life.

  Good luck Jeff, and to everyone else who is persevering and beating the odds. This has helped me through my grieving process to talk to others who definitely understand what I am feeling.

I am glad this site exists, I can't tell you how everyones words have affected me. I am going to print them out and paste them in my "mommy journal".

Much love and hope from Rhode Island..

Liz

Hi all,

  Just sitting at my desk and thinking of my mother and the terrible time we went through in 2006. I am now 23 and my sister is 27. My parents were married for 35 years.
She was diagnosed with CC in August 2005 and the doctors gave her 9-11 months to live (she was in stage 4 already). She died exactly 10 months later in June of 06'.

As I have read a few blogs, I feel a sense of comfort as I think of her every day. Constant hospital visits, every possible side effect, pain.. you name it.

I think the clinical trial the doctors put her on was way too aggressive and it just made her go down hill extremely fast. I watched her body deteriorate and that is what kills me to think about it. The flashbacks of the hospital, the beeps, I will never forget them. It brings tears to my eyes to think of what she went through.

She was never afraid to die. She was more worried about us after she passed because she was the leader of our family. Now my father struggles to pay his bills and I feel as though it is my responsibility to look out for him and I feel badly that he lives in our home by himself now. I now live with my boyfriend (who also lost his mother at a young age, which helps).

I think I wanted to come on this site just to offer my advice or just to vent to people that go through this rare, evil cancer. It is so aggressive, so hard to treat, and the chemotherapy side effects were so brutal for my mother.

Sometimes I feel like I could have done more for her, as she lay in bed for over 8 months, delirious and eyes barely open. I sat with her and read her stories, watched The food network, and just enjoyed the last months with her.

You can't look back and wish there was more that you could do. I know this. I did the best that I could under the circumstances. She was an amazing mother, and she taught me so much that I will take with me for the rest of my life. I am scared and sad that she will not see me get married or have children. I know that will be the hardest.

I get SO angry when I hear my friends talk about their mothers...."my mom is such a bitch.... i hate my mom... my mom won't give me any more money...."

It makes me want to isolate myself from them because I feel like they will never get it. And I know it is not their fault. Its not anyones fault, it is just the deck of cards I have been dealt.

I am graduating college, have a great internship, and a great apartment and I just wish she could see how well I am doing.

I started a "mommy journal" with a picture of us when we went to Italy together , which was the best time of our lives. I write to the journal as if the pages are my words to her. I feel like she reads them and I can imagine what her responses would be. I think this is a great idea for anyone that lost a parent at a young age like I did.

It is never easy. But my mother always said while she was sick... "Life goes on" I don't want you to stop living your life" Keep going to College" And I did.

I don't really know what to say. I decided to write in the grieving section because I don't want to give negative hope towards people who are still fighting the battle. I think my dad and my sister kept an overly positive attitude and were in denial of how serious this cancer was. My mom and I were more alike in our realistic approach of hope for the best prepare for the worst.
  When my wise mother was first diagnosed, she wrote a family letter to everyone and felt that this best decribed her mind frame: