Topic: Latest update on my dad...very sad:/

So what began as what we thought was shingles in December to possible pinched nerve in early january then became bile duct cancer in mid January....than 10 rounds of radiation to try & shrink the tumor on the spine causing the initial pain, 2 rounds of chemo, a couple hospital stays to this last Friday when dad was ready to give up... Long story short we took him to his GI on Friday afternoon because he was feeling as if his whole body was done. We thought maybe his stents were getting infected as it had been 7 weeks since placement & he kept getting rigors,shakes, fevers than complete body sweats. The Dr wanted to admit him to do some ct scans as well as blood transfusions as he was very anemic. Dad insisted on going home first to "take care of business, financial etc" I think he knew...anyway once hooked up to IV with fluids, blood transfusions, antibiotics & pain meds he was feeling much better. Problem was the cancer has an agenda of its own & tests revealed that the mets in his lungs had grown & his blood counts were not healthy enough to continue chemo. We then learned that the chemo itself was "palliative" not curative. It was then that dad decided he didn't want anymore false hopes or sugar coating & asked the Dr for his prognosis. She said maybe 2 months give or take so he said he was done with all the chemo meds etc & tomorrow when he gets discharged from hospital he will start Hospice. My mom, sister, husband & older son were there to discuss the process with the hospice team but we are still so frightened & shocked with it all. It just still seems like we are living a nightmare waiting to wake up. I follow this forum addictively & I now relate so much to all the feelings, thought & fears. I just don't know what to say sad(((

Re: Latest update on my dad...very sad:/

SENSITIVE TO HONEEZ1, you don't have to say a thing, we all understand. Teddy made the same decision and we never regretted it at all. Of course you are all in shock and scared, what kind of people would you be if you were not. I hope you are going to have Home Hospice as they are terriffic. I had ordered a Hospital bed for Teddy that we set up in the living room as it was airy and bright there and also the big TV. Oh and it made it easier for visitors. A hospital bed is so much more comfortable and easier to get up and out of. I also ordered a walker and later Oxygen as Oxygen helps relax the body as well as to make breathing easier. You are so right in that CC has a mind of its own but your Dad sounds likehe is getting his house in order and making his own Peace. Use this time to make seom valuable Memories. If ou want to know anymore please feel free to email me. Bottom line is Dad's comfort so keep a close watch on that as well. Be strong!  You never know how strong you are until "strong" is the only choice you have!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Latest update on my dad...very sad:/

Honeez...Although the news is shocking and difficult to digest, I much admire your Dad for his courage and his strength - he wants to control his destiny.  Honeez, you have been strong all along and you will be in the time to come.  If indeed your Dad decides on Hospice then you will have the support needed to make him comfortable.  It will allow you to tend to his need and treasure the time given. 
As far as I remember, you had mentioned hiccups which possible could be indicative of a blockage causing problems with digestion. If so, then you might want to discuss with the physician the possibility of a Gastrojejunostomy (GJ.) This surgical procedure connects the stomach to the proximal loop of the jejunum. It is usually done either for the purpose of draining the contents of the stomach or to provide a bypass for the gastric contents. It can be done laparoscopically or percutaneously.
Most often this procedure is done for unresected patients, but we have also seen it performed for those that have been resected.  There is some risk involved (mainly infection) but it is worth discussing it with the physician. Please know that your Dad does not have an expiration date stamped on his feet.  Try to live each day and relish the weeks or months for what it is - the most memorable of gifts granted to your family.
Please, stay with us.  We care and we will stand by you - all the way.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Latest update on my dad...very sad:/

Dear Honeez,

I am sorry for your pain and the progression of your Dad's disease. I hope he is comfortable and pain free during his time with Hospice and I wish for all of you to make beautiful memories of the time you spend together.

Hugs,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Latest update on my dad...very sad:/

Dear Honeez,

I am real sorry to hear about your dad. I was there with my dad where you are right now and I so know what you are feeling and what you are going through right now. As Lainy has said, you don't have to say anything, we know.

It sounds to me like your dad has made his decisions and he wants to do everything now on his terms and to me that is fair enough. I know that it may be hard to understand and is a tough situation, but my dad went through the same when he went into hospice care. Hospice care will be of great help to you all and they will make sure that your dad is as comfortable as possible. My dads experience with hospice care was very good and both he and us have nothing but good things to say about the care that he got from them.

I look back on this time with a lot of fond memories as well. Some might think that strange but we were able to spend so much time with each other and talk lots and we did share some laughs as well about many many things that had happened over the years. Everyone told me to treasure this time and make good memories and they were so right about that. So I will say the same to you as well.

And please remember that we are all here for you always.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Latest update on my dad...very sad:/

Honeez,

I too am sorry to hear where things have progressed with your dad.  Unfortunately I know exactly how you are feeling as I too have been there.  Know that I am thinking of you and your famiy and remember that we are all here for you to help, support or just to listen. 

Love & Hugs
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Latest update on my dad...very sad:/

Your Father and your family's courage at this time shows the great love you have for one another.  Your Dads decision was the same as my sons and I do not regret one moment of being next to him on his journey.  Hospice was wonderful.  This is usually a painful cancer and I had promised my son there would be no pain, as that was the one thing he feared.  We did have to press Hospice for more and stronger meds the last week.  If it helps at all, follow your heart.  If you feel he is in pain, help him.  Be HIS advocate and insist upon his complete comfort.  Do not doubt yourself!  We did use one suppository prescribed for every 12 hours at four hour intervals.  It worked to relieve him.  After the new nurse called and got over being upset with me she realized he had not been prescribed an adequate amount.  She fixed that oversight immediately.  So follow your heart in his care.  The only thing I can say that might help your sorrow is......we are not a religious family, but we were fortunate enough to spend a few hours watching my son transition.  As his Mom it soothed my soul to KNOW he was not alone and see for myself the most amazing unexplainable and soul comforting interactions he had with ?, two days before his passing!  I try to keep thinking of that as right now the air hurts to breathe, I'm missing him so.  My best wishes for peace and comfort for your Dad and all of your family!

Re: Latest update on my dad...very sad:/

Notdoneyet....what a powerful posting you presented to us.  Your job is not done yet; you have much to gift to others.  From the bottom of my heart, thank you.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Latest update on my dad...very sad:/

I would like to take a different spin on this! What a surprise!!! SO....NOT DONE EVER! You will always be the Mother for Eternity. Your son will hear your voice, he will see your smile and you will see him in different ways. He has only gone to the next room until you are to be together again.
I went through some of the same things you did with Hospice. For the most part they are just wonderful but we still have to be vigilant, and you dear lady did a great job as a mother and advocate. Teddy also had a glorious journey at the very end and we felt privilidged to be a part of it. It was totally amazing. This is how I like to remember him as he met and greeted those that went before him. There are no words to describe it. I cannot imagine the pain of loosing a child and just know we hope you hang around with us, it can be very cathartic. Sending you lots of love.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Latest update on my dad...very sad:/

Thank you Ladies for your kind words.

11 (edited by JenniferS Wed, 20 Mar 2013 09:16:29)

Re: Latest update on my dad...very sad:/

Honeez - I lost my Dad to this cancer 2 years ago in June.  I can so remember the emotions we went through when hospice got involved.  We had nurses stay at the house at night for the first while, and then we eventually moved him to a hospice.  The day they came to take him from the house is one I will never forget, but once we were there, we wished we had been able to bring him sooner.  He would have loved it, and the people.  It's a terrifying and sad step, but one I'm sure he, and all of you, will be happy to have made.  We were so lucky with Dad as the nurses and staff were incredible.  He made a peep and they were in there making sure he was 100% comfortable.  We never had to worry about him hurting.  You have to watch carefully though - nobody deserves to go through pain, it's unecessary and some places are better then others about ensuring the complete comfort of the patients.

What Notdoneyet said about those final days... it's true.  As hard as it is, try to look past losing him and see what it is he is gaining, and know there is no doubt in the world that they are not alone, not for one second.  It's an incredible journey, one I wrote about here and I'm sure you could search if you were interested.  Those last few weeks with Dad were incredible, and brought me more peace then I could have ever hoped for.  It's hard, and emotional, and I miss him terribly, but I know he's in a good place... the way he talked about his "other world" ensured we KNEW it was a good place.

I wish you many good times and positive memories with your Dad ahead.  Make sure to let him know that you are going to be okay while you can.  I think all Dad's need to know there little girls (regardless of age) are going to be okay.  Take advantage of every second with him, and know that there are people all over the world thinking of you and praying for you, and your family.  Stay strong.

Hugs from across the miles,
Jen

Re: Latest update on my dad...very sad:/

Thank you everyone for your kind words of support, prayers & well wishes. Dad is set up at home we met with Hospice nurse yesterday who went over all his meds & needs & he seems to be in a good place both physically & mentally.  I'm not fooling myself, as I know he won't be this good for long but trying to spend as much time together reliving memories etc. I think the hardest day was him having to talk with my 16 yr old son whom he has a special bond with. My son Jake knows he's terminal as does the whole family but dad insists on talking to all the grand kids separately & having his one on one time with everyone. Being a 16 yr old boy with hormones is hard enough but witnessing him breakdown was so sad. I'm now having to look forward to my daughter who is in college out of state & coming home Friday for spring break. Last she saw her "Papa" was Christmas when he was healthy with maybe a case of shingles. She has missed out on all the hospital excursions, chemo/ radiation etc so for her it's going to be difficult to come home & see a totally different person (not to mention 35 lbs lighter) She is only home for a week than must fly back to school so most likely this will be her last visit with him...My oldest son is in the process of applying to medical schools trying to follow in the footsteps of his papa & while he knows he won't be around to see him graduate his hope was that he would still be here for his "White coat ceremony".... Alas it doesn't look that will happen either sad Well here I go rambling on again, just so many thoughts & feelings going in a million different directions UGH!!!!!!!

Re: Latest update on my dad...very sad:/

Honeez, I just want to say that the tears came on your last post here as your Dad reminded me so much of Teddy right down to the kids calling him Papa. Teddy made sure EVERYONE got a special visit with him and that he said what he wanted to say to each. He even had made up little packets of his "valuables" so everyone would have something, even close friends. You see, to me, your Dad's atitude is a sign he has come to his own terms, he is not afraid and he has made his Peace.  To me the hardest part was the day he went to the Hospice facility as he knew he needed to go but asked me to drive him! OMG it was the hardest thing I ever did in my life as I knew we were going there as a couple and I would then be without him. BUT no matter how long or short this interval, make the most of it as it will carry you through. I am here if you need anything o just slip me an email. My thoughts and prayers are with your family.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.