Please help with info-so frustrating

fmdrivegirl

I've been reading your stories in here for the better part of two days and I'm hoping some of you can help me.
My dad has pancreatic cancer. Since I live in B.C. and my parents live in Newfoundland - this is becoming a very tense situation. They "want" me to know what is going on but so far I'm just confused. They performed a biopsy last week and I'm -we're- waiting to hear the results. I know that they've told him its also spread to his liver. This is so incredibly frustrating and I'm totally at my wits end. I'm a 38 year old intelligent woman - yet I can't seem to get a straight answer anywhere!
I have been here for 10 years and I haven't seen my parents too very much - yet we talk almost daily. I can't see what is happening but I know a weightloss of over 80 pounds in two years isn't great. He is in a lot of pain right now and they have given him pills for that - but I don't know what kind.
I'm sorry to ramble on but this is what I know - and kind of in that order. Right now, my mother and I have tentatively touched on the fact that the outlook isn't great. I want to go home because all the reasearch I've done indicates that I should. I'm already sorry for the years I have lost and I will not lose any more time.
I think my parents are trying to evade dealing with this situation. My mother is a nurse and I know she understands this disease. I also know she is very scared - not because of the things she's said, but because of the things she hasn't.
I have read more about this disease in the last four weeks than I would have thought possible. The one thing that is missing is what I can expect. The only place I've found any kind release was here. So many of you lost so much and so quickly. That is my biggest fear - that my parents are trying to protect me.
I plan on returning home at the end of this month. I've applied for a leave of absence from my job and I've got it - plus my holidays. I am so afraid of what is about to happen and path I now have to take. I'm even more afraid that my dad is scared. And withdrawn. And in a lot of pain. Mostly I'm afraid just how far this disease has and will spread. I feel like I should be there now. Did any of you have to deal with great distances? My job is not a big deal - I already know that if I had to, I could find another one in Nfld. It's just that they keep saying wait! Wait for this result, wait for the biopsy.....what more can I have to wait for? Are there even more tests? I'm not sure but this knot of fear in my stomach makes me feel like I'm making mistake.
Anyway, sorry to ramble on but I can't really seem to "talk" about this with anybody face to face. The things I read are, by times really scary and at other times incredibly inspirational. Mae and Yvonne - your stories hit me the hardest but gave me the most - I can't even find the words to say how much they touched me and how sad I am for your loss. Or, how much you gave me some idea of what I am about to face and how I hope I have your courage and grace when I do.
I'm sorry if I sound morbid but this is what I do. I reasearch. I feel truly alone here right now and I could use any information about how this cancer is about to hurt my entire family and what I can do to help them. My dad is still my best friend. How can I make them understand that I am strong enough to help? And I just want to be with them. I don't want to go home to say goodbye - I need to go home to say hello. I need time. Waiting just seems to be such a waste of it.
Anyway, thank you all. I hope you can help me.

Meg · New User Joined: 18 Sep 2005 Posts: 9

Your post hits very close to home. I too live across the country from my mother, who was diagnosed with pancreatic cancer three months ago. I happened to be there on holidays when she was first diagnosed, and I was able to spend the summer with her (my job follows the school calendar) but now I am back home and feeling very helpless. I, like you, was worried about just getting home to say goodbye. That isn't good enough. I want to be there. But real life does go on and we need to somehow plan our time with no idea of what kind of timeline we're working with.
Here's what my experience has been, I don't know if it's relevant to your dad or not:
The cancer has spread to my mother's liver. She did chemo (called gemcitabene) for three months but has now stopped. She may try again in a month, depending on how she is feeling. The effects of the chemo at first seemed not too bad, but perhaps it has accumulated in her body and became harder with each round.
She has a painkiller with morphine, but has not yet used it. For now she is managing her pain with Tylenol, and her nausea with gravol. She is extremely tired, has lost weight and has no appetite. The chemo made everything taste bad and eating is difficult.
She did try a new drug called Tarceva but the rash side effects were so extremee she stopped right away.
Her last CT scan showed that the cancer has grown, but it is unclear whether it would have grown faster without the chemo or not.
I too get very frustrated at a lack of information. It's hard to know whether it is because cancer can be so different in each person so it's impossible to have answers, or whether I'm not asking the right questions, or what it is. I don't know.
In any case, this is my rambling response to you. I certainly don't have any answers, but I can sure sympathize with what you're going through as my situation is almost identical. I'me very lucky to have family that I can rely on to give me as much information as they have, and to let me know when their gut tells them I should go home. In the meantime, I plan as many short visits as I can (long weekends) and phone everday.
I hope this has been helpful and that you can draw on some of what's happening with my mother to understand what's happening with your father. Good luck.
_________________
Meg

fmdrivegirl

Thanks for your story Meg - I was beginning to wonder if I was the only person who is separated from my parents during this time!!
Anyway, we are STILL waiting on the biopsy results - which should have come back on Friday....Now Wednesday. From what I can understand, this will try to narrow down where the cancer started and how far/agressive it is. God help me - I am already sick of this not knowing. I can only imagine what my dad is going thru.
You are right - the waiting is the hardest part. Even my mom said she just wants someone to tell them WHAT??? Any answer is better than this.
I am sorry to hear about your mom - distance is unnerving when you are dealing with something like cancer. But, your mom sounds like a fighter and my thoughts are with her.
Mom also told me the percocet were for the pain from the biopsy. I guess they did his liver and from the shadows on his pancreas, they think it might have started there. Anyway, it doesn't matter. All I know is that he is in pain and I really want to be close - not on the other end of the country. But, life is a stark reality.
I am sooooo frustrated with this situation. I feel helpless and useless and guilty for being here instead of home.....
Thanks for letting me know I'm not alone - it really helps. Please let me know how your family makes out. I check this site a number of times a day in hopes of learning more......Keep your chin up!
fmdrive girl

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