new to all this

Good Day,

My name is Bob, I live in Buffalo, New York. My father was recently dianosed with stage three pancreatic cancer which has gone to the lymph nodes. I realize his time is short and that is devastating to us all.

 I am the main care giver and have left my job to see that my father gets what he needs and is as comfortable as possible. Hospice has him on hold and do not deem him ready for their total care. Unfortunately when I told the company that was providing a nurse and an aide about hospice? They stopped coming to the house. I Needed them. My father is also a type two diabetic and his sugar levels are all over. Trying to get a doctor to call you back is almost impossible. Dad started just the chemo, last Monday. He will go for that once a week for the next six weeks.

 I am scared, angry, and just plain confused. I show no fear or negativity around my father and demand the others do the same when they come over to the house. I need to talk to somebody, I need a support group. It would all be so helpful. I do not know where to begin. I have no wife/girlfriend or real friends to talk to. Its very hard. I want to do the best things possible for my father as he took care of me all my life. I feel any help would assist me in achieving this goal for Dad. I know time is short. My email address is:

 Please feel free to contact me anytime wia my email and I will come to this sight whenever I have time. I thank anybody in advance for any help they can offer no matter how large or small. God Bless You and Thank You!

Bob - stage III PC is not a death sentence!! Bad disease, for sure, but stage III patients can sometimes even have whipple surgery. Your dad needs to have a second opinion, and fast. Is it possible for you to get him to MD Anderson or to Johns Hopkins (they have a special clinic every Tuesday for new patients, and you may be able to send your dad's records for a consult without traveling there - check their website. JHH Sidney Kimmel Cancer Center, search pancreatic cancer). Or to NYC to see Dr. Bruckner or Dr. Cameron (do a google search for phone #'s)? Time is of the essence, and dad may not be inclined to seek a second opinion - that can seem "impolite" to older folks who may feel very loyal to their long-time docs. But in the case of PC, you need an expert. Period. You sound very committed to your dad, so kudos to you. Let us know how things proceed. - Janet

Hi Bob,

Sorry you are having such a tough time.  I suggest you try the Johns Hopkins support board; not to put this board down, but there is much more activity there and many quite knowledgeable and very kind people.  Some have PC and some are care givers but their aggregate mind is phenomenal.  They go out of their way to be helpful so try going there with all your questions.

Good luck.

Joan 

Hi Bob,

I am also new to all of this.  My mother was diagnosed last week PC with mets to liver, stage IV.  She is starting Gemzar tomorrow, first treatment of 6 - one a week.   They have also said she does not have alot of time. Since your dad is stage III, I am praying you have more time with him.

Scared, confused, mad and just in a fog are all good ways to say how I am feeling these days.  The only good part I can say to you right now is what I first told my sisters when we were all crying on the phone:  "At least God did not take her last night in her sleep.  We know that the time is coming, we can treasure what time we do have and thank the Lord  for each hour we can share with her, wheather we are laughing, crying or just talking"    I hope this is of some comfort to you.

I commend you for taking care of your father and agree with you, they took care of us, now it is our time to be there for them. If you need someone to vent to it sounds like our parents are about at the same time table - chemo wise. Tell me, how did his first week of chemo go?  I have no idea what to expect tomorrow, this weekend or thereafter.  Any info you can share would be of help to me.

Also, get on the phone and call the nurse/service and advise that Hospice is not there and you need them.  You cannot do it yourself and you should demand the assistance. 

My heart goes out to you and your dad, keep the faith.

On 8/29/2007 rebelman46 wrote:

Good Day,

My name is Bob, I live in Buffalo, New York. My father was recently dianosed with stage three pancreatic cancer which has gone to the lymph nodes. I realize his time is short and that is devastating to us all.

 I am the main care giver and have left my job to see that my father gets what he needs and is as comfortable as possible. Hospice has him on hold and do not deem him ready for their total care. Unfortunately when I told the company that was providing a nurse and an aide about hospice? They stopped coming to the house. I Needed them. My father is also a type two diabetic and his sugar levels are all over. Trying to get a doctor to call you back is almost impossible. Dad started just the chemo, last Monday. He will go for that once a week for the next six weeks.

 I am scared, angry, and just plain confused. I show no fear or negativity around my father and demand the others do the same when they come over to the house. I need to talk to somebody, I need a support group. It would all be so helpful. I do not know where to begin. I have no wife/girlfriend or real friends to talk to. Its very hard. I want to do the best things possible for my father as he took care of me all my life. I feel any help would assist me in achieving this goal for Dad. I know time is short. My email address is:

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

 Please feel free to contact me anytime wia my email and I will come to this sight whenever I have time. I thank anybody in advance for any help they can offer no matter how large or small. God Bless You and Thank You!

 

 

  Bob,

  My father was diagnosed in May.  Unfortunately his tumor was wrapped around the artery.  He refused to do chemo and has been under hospice all summer.  They have been good about helping ease his pain and discomfort. My mother takes care of Dad full time and I live next door.  Mom and Dad were hoping that supplements and diet would give Dad a chance but he is failing.  

   It tears at my heart and I want to do more for him.  We had three different opinions and not one gave us any hope.  Dad chose not to do chemo because he thought it might prolong his suffering, but I wanted him to give it a try.  So now I will always wonder...'what if'.

  I rely on my faith in God to see me through.  I don't know what I would be like if I did not have Him in my life seeing me through these dark days.

  I will pray for you and your father tonight. 

   Vicki

Being that you do not have the help of Hospice yet I would call the physican's office and demand that they get Nursing services for you. If the doctor can't take a minute to talk to you I would speak the the PA or nurse and explain the situation that Nursing Services is not providing any help and no Hospice help.  I went thru the same situation with my husband I had nursing service for one month, because of limited coverage thru medical insurance I then had to opt for Hospice help.  But your father can still be treated by  doctors and have scans, etc.if you do have Hospice.  Call and keep calling until you get somewhere. If it was their family member I'm sure it would be different. Also if there is a social worker at the Hospital, get it touch with them. I know thats were I got my help.

Best of Luck to You

Hi Bob, sorry to hear about your dad, my father also is fighting cancer.  I am from Niagara Falls and just wanted to let you know that hospice should be able to help you with care for your dad.  My uncle is a social worker for Hospice in Lockport.  My dad is under hospice and he gets a nurse that goes to the house, he doesnt need a aide right now but if he did they would provide that.  They also have the hospice house in Lockport, not sure if there is one in Buffalo.  If you cant get any where with the doctor to get help with your dad maybe try hospice.  Your in my prayers.

Mary

Hi Bob,

Its a hard diagnosis for sure, but there is hope.  I've been afraid to hope since my Dad's diagnosis in April of this year with stage IV PC.  Every appointment we hoped and prayed and were let down, to the point where all hope was nearly extinguished.  Yesterday, despite a virtual death sentence 5 weeks prior, we got the news that the tumors had regressed.  They almost pulled the plug on treatment, but we pushed to give it more time.  I've found www.pancan.org to be a wonderful resource for inspiration, support and help with resources.   Your Dad may turn around as mine has- we really were planning the end and he was so sick it seemed near.  We went from giving round the clock care to checking in now every other day to see what they need.  I pray it gets better for you.

J 

On 9/6/2007 Fractioned wrote:

Hi Bob,

Its a hard diagnosis for sure, but there is hope.  I've been afraid to hope since my Dad's diagnosis in April of this year with stage IV PC.  Every appointment we hoped and prayed and were let down, to the point where all hope was nearly extinguished.  Yesterday, despite a virtual death sentence 5 weeks prior, we got the news that the tumors had regressed.  They almost pulled the plug on treatment, but we pushed to give it more time.  I've found www.pancan.org to be a wonderful resource for inspiration, support and help with resources.   Your Dad may turn around as mine has- we really were planning the end and he was so sick it seemed near.  We went from giving round the clock care to checking in now every other day to see what they need.  I pray it gets better for you.

J 

Hello J,

 THANK YOU for the support and prayers as well as the info. I just recieved my Pan-Can packet in the mail yesterday. We will never give up hope and are always hoping for a miracle. My father had his second chemo treatment yesterday and thus far? no bad side effects like most described. We take it one day at a time.

 I am very happy to hear of the regression for your father! I pray it will continue to improve for him and your family. Have a nice weekend!

Bob