looking for any support

Hello,  my Dad was DX with EC of April of '08.  He was in stage 4B and also has Parkinson's.  He has endured one round of chemo with radiation and another additional round of Chemo.  He was just told that his tumor has enlarged and now spread to his lungs.  I have been lightly reading the blogs and researching the information on the website, however his doctor is still in and very positive state and claims that things could improve, however his dx is incurable.  Can anyone provide me with the "real" information as to what to expect and how to move forward.  My Dad is only 64 year old and also lives 2500 miles aways.  I am trying hard to figure out when I need to drop everything and resume as caretaker for him.  I am  yearning for the stories of all inflicted with either EC or parkinsons and crave the honest rambling of everyone to make sure that I am doing my Dad the justice that he has done in the 40 years of raising me.  Please don't be afraid to tell me the facts and let me know what questions I need to ask.  I need reality, not hopes at this point.  I thank everyone who has shared their pain and please know that is has helped many people to cope with this illness.  Wishing you all my best, Daughter in CA. 

Hi, I checked back here to see if someone had replied to my message and saw yours here. I don't have any expert advice but just wanted to reach out and say that I understand how you feel. My father in law is in the process of being diagnosed with this disease and I am feeling very sad. I lost my dad and mom during the last 15 year and now this feels like I am losing another parent. I hope that someone can answer your treatment questions. Though I don't know enough to help in that area, I did want to say that having been through serious illness with both my parents, know that every moment is precious and the fact that you are showing your love to them is so very important. You are a good daughter and are doing all that you can. This is a true gift. God Bless, Mal

 

On 11/22/2008 daughter in CA wrote:

Hello,  my Dad was DX with EC of April of '08.  He was in stage 4B and also has Parkinson's.  He has endured one round of chemo with radiation and another additional round of Chemo.  He was just told that his tumor has enlarged and now spread to his lungs.  I have been lightly reading the blogs and researching the information on the website, however his doctor is still in and very positive state and claims that things could improve, however his dx is incurable.  Can anyone provide me with the "real" information as to what to expect and how to move forward.  My Dad is only 64 year old and also lives 2500 miles aways.  I am trying hard to figure out when I need to drop everything and resume as caretaker for him.  I am  yearning for the stories of all inflicted with either EC or parkinsons and crave the honest rambling of everyone to make sure that I am doing my Dad the justice that he has done in the 40 years of raising me.  Please don't be afraid to tell me the facts and let me know what questions I need to ask.  I need reality, not hopes at this point.  I thank everyone who has shared their pain and please know that is has helped many people to cope with this illness.  Wishing you all my best, Daughter in CA. 

 

My father was DX with EC last July. Although the doctors have never actually told us his "stage" the cancer has invaded his lymph nodes and liver. He has gone through chemo, radio, surgery, having a feeding tube and now a stent. His current weight is about 116lbs and he is very depressed. His meds the doctors have him on have made him hellucinate. My family doctor has told me that every one is different because I too wanted to know when to put my life on hold to help with his care. My mother is taking excellent care of him at home. She has been the rock of Gibraltar, I speek with her just about everyday. I told her the other day that she is an amazing women and when things get to tough I will come and stay with them. We live in the same city and as horriable as this sounds I have a real hard time seeing him, it is so sad. Seeing a father that used to be able to take on godzilla to this frail shell of a man takes a lot out of me. (My word that sounds so selfish) Last year I thought would be our last Christmas together that is when he had been on chemo for a few weeks he was dizzy and had this void look on his face, but with Gods will we will all be together this Christmas, but for how much longer I am not sure. My father is 72 and worked right up to the  day he was diagnosed with this wreched disease, people are always telling me that at least he has lived a long life. This is true and I am very thankful for the 40 years we have had together, but none the less he is my dad. Of all the times he has told me to toughen up, stand tall or don't worry dear I will take care of it. I can not return any of it, I can only sit beside him and hold his hand. If he sees me crying his favorite saying is...what's the matter your bladder to close to your eyes.  

 

I'm a daughter in Minnesota. My much loved mother (69 yrs) has stage IV with mets to the nodes and liver.  The tricky thing is that when all we want is answers...there aren't any.  Cancer is such an individual thing that even most doctors won't try to predict the outcome. Life is a fatal condition...what is going to happen between today and the end has yet to be seen.  The only difference is that your dad, and probably my mom, know WHAT is going to end their lives.  For me, it might be a car accident tomorrow or heart disease when I'm 80. Who knows?  Cancer hasn't slowed my mom down much...she is still living much as she always has.  I've seen a lot of messages from people that have survived stage IV cancer, and those with stage II that only made it a year. Each person is too individual to say how things are going to go for him/her.  That leaves us with only hope.  And it appears that is how life and death are layed out...we just aren't supposed to know. 

I do know that you sound like a loving, caring daughter and that when your dad needs you, you'll be there for him.  Just stay in close communication with him and follow your instincts.

 

On 11/23/2008 Advocate of Hope wrote:

I'm a daughter in Minnesota. My much loved mother (69 yrs) has stage IV with mets to the nodes and liver.  The tricky thing is that when all we want is answers...there aren't any.  Cancer is such an individual thing that even most doctors won't try to predict the outcome. Life is a fatal condition...what is going to happen between today and the end has yet to be seen.  The only difference is that your dad, and probably my mom, know WHAT is going to end their lives.  For me, it might be a car accident tomorrow or heart disease when I'm 80. Who knows?  Cancer hasn't slowed my mom down much...she is still living much as she always has.  I've seen a lot of messages from people that have survived stage IV cancer, and those with stage II that only made it a year. Each person is too individual to say how things are going to go for him/her.  That leaves us with only hope.  And it appears that is how life and death are layed out...we just aren't supposed to know. 

I do know that you sound like a loving, caring daughter and that when your dad needs you, you'll be there for him.  Just stay in close communication with him and follow your instincts.

 

Thank you so much for your comments.  Sometimes life is
unfair and you are right, I don't control the decisions for my parents’
longevity.  We have just spent the most
wonderful Thanksgiving with family, all nineteen of us, form all over the
nation.  We are trying to enjoy each
moment together, but I still want—need—to know what lies ahead.  My prayers my go unanswered, however, at
least I feel I am doing what I can at this time.  Please continue to share your struggles, joys
and journey if desired.  I appreciate all
the support and comments I have received.

 

All the best!

Carrie

 

On 11/23/2008 Jubbee wrote:

 

On 11/22/2008 daughter in CA wrote:

Hello,  my Dad was DX with EC of April of '08.  He was in stage 4B and also has Parkinson's.  He has endured one round of chemo with radiation and another additional round of Chemo.  He was just told that his tumor has enlarged and now spread to his lungs.  I have been lightly reading the blogs and researching the information on the website, however his doctor is still in and very positive state and claims that things could improve, however his dx is incurable.  Can anyone provide me with the "real" information as to what to expect and how to move forward.  My Dad is only 64 year old and also lives 2500 miles aways.  I am trying hard to figure out when I need to drop everything and resume as caretaker for him.  I am  yearning for the stories of all inflicted with either EC or parkinsons and crave the honest rambling of everyone to make sure that I am doing my Dad the justice that he has done in the 40 years of raising me.  Please don't be afraid to tell me the facts and let me know what questions I need to ask.  I need reality, not hopes at this point.  I thank everyone who has shared their pain and please know that is has helped many people to cope with this illness.  Wishing you all my best, Daughter in CA. 

 

My father was DX with EC last July. Although the doctors have never actually told us his "stage" the cancer has invaded his lymph nodes and liver. He has gone through chemo, radio, surgery, having a feeding tube and now a stent. His current weight is about 116lbs and he is very depressed. His meds the doctors have him on have made him hellucinate. My family doctor has told me that every one is different because I too wanted to know when to put my life on hold to help with his care. My mother is taking excellent care of him at home. She has been the rock of Gibraltar, I speek with her just about everyday. I told her the other day that she is an amazing women and when things get to tough I will come and stay with them. We live in the same city and as horriable as this sounds I have a real hard time seeing him, it is so sad. Seeing a father that used to be able to take on godzilla to this frail shell of a man takes a lot out of me. (My word that sounds so selfish) Last year I thought would be our last Christmas together that is when he had been on chemo for a few weeks he was dizzy and had this void look on his face, but with Gods will we will all be together this Christmas, but for how much longer I am not sure. My father is 72 and worked right up to the  day he was diagnosed with this wreched disease, people are always telling me that at least he has lived a long life. This is true and I am very thankful for the 40 years we have had together, but none the less he is my dad. Of all the times he has told me to toughen up, stand tall or don't worry dear I will take care of it. I can not return any of it, I can only sit beside him and hold his hand. If he sees me crying his favorite saying is...what's the matter your bladder to close to your eyes.  

 

 Many thanks for your comments.  I share your frustrations as one
who has admired the strength, presence and confidence of a man who has raised
me and now I truly know and understand how much he is relying on me.  It
is a weird, corky turn of events as now I see him digressing and realize that
he is human and only needs a hand to hold, a quick touch to his cheek, all
those things I thought he was too proud to display.  I write this knowing
that my brother, still to this day, still has never hugged his dad (not of his
choosing).  It is very difficult to see someone dissolve in front of your
eyes.  However, keep strong and if you can only hold his hand, that touch
seems to be the glue that keeps them focused, at least through that
hour.  I have taken up Sudoku and would be happy to send you a few, if you
need some distractions as you hold that hand.  

The 116 pounds you described is hard to swallow.  My father
lost over 50 pounds in one month but seems to be holding out at his new current
weight (150 lbs).  However, he has a tube for feeding since April and that
seems to give him the nutrition he needs for daily life.  He is in his
third round of chemo and every day is a blessing.  I still wish for my
crystal ball, as I am 2500 miles away. 

Please keep me posted on your news and I really appreciate the
support I have received. 

Many thanks!

Carrie

Mal,

Thanks so much for your kind words.  I really needed a extra support as you obviously must of heard through my words.  I appreciate you reaching out and wish you would continue to do so.  

I just spend the most wonderful time with family, and my Dad, at Thanksgiving.  I was blessed to have so many people, and in good spirits around us.  It was hard to leave.  

Thanks again for your answer to my words. 

Warm Regards,

Carrie

 

 

Carrie, My husband is almost three years from dx with EC and lung mets. Just want you to know that one of the things that helps me to feel encouraged is when the weight loss stops. It's a battle to get through the treatment, but we have beaten this back a few times and I have noticed more than once that when he stops losing and starts to be able to hold the weight again, he is doing well. I know they are all different, but it's one of the small signs that makes me feel like I could be headed in the right direction.

It's a very tough fight, but it can be won. I am also a parent and am raising a son who is a young adult. He is currently in Korea in grad school, and was in college about an hour and a half away when his Dad was diagnosed. As a parent, I have to say I don't want him to regret that he was so far away, but feel very strongly that he is doing what he needs to be doing at this point in his life. I know it's hard for him, but it's also important to stay on track in your life. I'm not really sure what I'm trying to convey to you other than that I know it is a difficult balance even though I am in a different role as the wife and caregiver. I guess in contemplating what life has been like for my son, I am able to empathize with you.  

Hi,

 

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