Topic: Dad's Journey Continues

Hello,
It's been awhile since I've  posted. It has now been 9 months since dad was diagnosed with bile duct cancer.  He has had a total of 6 hospital stays,  7 ER visits and 2 very close calls where we thought he was leaving us.  Currently he is home and having many up and down days...fevers, pain and lots of fatigue.  His weight has gone from 190 down to 137.  It is extremely hard to see him in this state.  Two weeks ago he was able to attend my nephew's high school graduation.  It was a very emotional weekend as he was not sure he would make it.  I am traveling home next weekend to be with him for his 69 birthday and Father's Day.  I am so looking forward to celebrating with him and the family and hoping he is feeling okay. This week has been challenging for him. 

This journey has shown me the strength that both mom and dad hold!  They are simply amazing!  I love them both so much. 

This website and discussion has helped me get through all of this.  When I need strength, I pray and then come here to pull for the strengths of all of you! 

Thank you!
Rena

Re: Dad's Journey Continues

Rena....your Dad is one amazing man.  He continues to show his determination of living life and partaking in those things important to him and his family. 
Travel safely, dear Rena, and take in these so very precious moments granted to us, as the memories become our treasures, forever.   Stay strong and know that you have tons of love and good wishes heading your way.  Happy Birthday to your Dad and big hugs to all.
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: Dad's Journey Continues

Hi Rena,

Thanks for telling us how things are going with your dad. He sure has been through so much hasn't he. What a trooper he is! I can so relate to what you are going through right now having been there with my dad as well and yes, the up and down days are tough to take. My dad had a ton of them too and when he was having a bad day I just hoped that they would be followed with a bounce and a period of good days afterwards.

What a weekend next weekend will be! Fathers day and your dad's 69th birthday, many many great reasons for you all to celebrate and enjoy! Like Marion has said, moments and events like that are to be treasured and will always be remembered so I so hope that you all enjoy it. A happy birthday to your dad and please let us know how it goes.

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: Dad's Journey Continues

I am here with dad and mom.  Dad made it through Father's Day and his birthday yesterday, however  mom and I have been up all night with him.  I am pretty sure that he is showing signs of liver failure ( can't eat, vomiting, pressure in his tummy, extreme fatigue, sleeping for long hours at a time, extreme nausea, blood blotches on his lower leg, swollen stomach after just getting drained last week).  He refused to go the ER an hour ago and begged mom to just let him rest for a bit.  I told mom that we need to find out about his liver function so that we and his Dr's can plan accordingly.....please tell me that I am not crazy!!!  I know that we all say this...but this is such a horrible & scary roller coaster ride!

Rena

Re: Dad's Journey Continues

Dear Rena,

I am very sorry to hear how your dad is right now. My dad went through the same as your dad is and it is tough. Is your dad under the care of hospice at home? How long has this vomiting been going on for? Personally I would say to get your dad to the ER if you can or if not, get the hospice nurse to come see him today if he is under their care. No one should have to suffer like this at all. There are meds that can help with the nausea and vomiting, is your dad taking any of them right now? My dad was taken into hospice to see if they could get to grip with his nausea and vomiting as he had it really bad and had been like that for a while. At the very least I would suggest phoning his onc or GP to get their advice, but I would feel much better with going to the ER if you could. I know that others will chime in soon with their thoughts as well.

No you are not crazy Rena, not crazy at all. You are in a real tough spot right now with your dad and I can so relate to everything that you are going through having been there with my dad myself a few years ago. I so hope that you can manage to get him some help here as you should all not be going through this alone. Please let us know how things go and remember that we are all here for you Rena. You know that we truly care.

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: Dad's Journey Continues

Dear Rena, I am so glad your Dad got to celebrate your Nephew's Graduation and his 69th Birthday. It is some kind of Miracle how we can pull on our strength from within to will ourselves to certain points. Rena, has the ONC talked about Hospice or is Dad in Hospice? Has the ONC been told of the discomfort Dad is in? I have a listing of the end signs, if you like I can e mail it to you, it is very helpful, but only if you would like to see it. The bottom line is "comfort". We are all here for you.

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: Dad's Journey Continues

Thanks Lainy & Gavin!
Dad is not currently under hospice care.  As you may recall we had a couple close calls but this time it feels different to me and I am sure that this may be the time to get it in place.  Dad's Dr's have had the hospice team meet with him and mom a couple of times, but he was not ready. 

I'm bracing myself for a very tough day.  I just had a long talk with mom and I can feel that she knows it is time.   She is getting dressed now and then we plan to wake dad and see if we can get I'm there.  If not, we agreed to call 911.  He is actually sleeping peacefully right now, but I just checked his tummy, and it is even larger than it was a few hours ago and he has not moved.

I will keep you posted.  Lainy if you could email the list of signs at the end that would be great.  My email is renabroadnax@gmail.com.

I will touch base later today with an update.  Thanks so much!
Rena

Re: Dad's Journey Continues

Hi Rena,
My suggestion is not to try taking him yourself. He will be much more comfortable being taken by ambulance to the ER (and insurance should cover it to hospital though not necessarily home from in my experience). After this visit, I highly rec. home hospice (or hospice facility). It takes way too much energy and time to go to ER for every med adjustment, etc.. MUCH easier on your Dad to have them come to him. It doesn't mean your Dad won't get treatments like paracentesis, antibiotics etc. if its his desire. There is Much emphasis on comfort and treating anxiety too. It also doesn't mean he has to stay on hospice if he stabilizes. The decision is in your Dad's court. It doesnt mean he is being "given up on".   My father got to dreading the ER because it was traumatic physically and mentally (unnecessary IVs and physical manipulations) and exhausting to him. He did not have cancer...it was Alzheimer's and he was 90.  God bless you during this awful and precious time. 
Willow

Willow

Re: Dad's Journey Continues

Rena...my heart is with you in this difficult time.  The one thing I would like to point out is that there are different types of vomiting associated with this disease.   You would want to make sure that it is brought under control and certainly if you choose to have your Dad tended to by hospice only. 
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: Dad's Journey Continues

Hi Rena, I've come to your post late.  I hope you have managed to get your Dad seen by a doctor and he is getting relief from his symptoms.  There is much that can be done to ease symptoms and make him more comfortable.  Listen to your gut and stay strong.

Clare

In the stars now . . . .

Re: Dad's Journey Continues

Thanks everyone for your support and wisdom!  Dad is back home from the hospital and Home Hospice care is in progress.  It has been a very challenging few days.  Mom has come to acceptance that he may not rebound this time. He is sleeping about 90% of the day, eating vey little...etc.  his blood spots his legs are from reduction in his liver function.  Unfortunately there was not much the hospital could do for him at this point....which made it clear that it was truly time for Hospice. 

Am struggling because I have to head home for a couple days before I can come back.  I am so scared that we are going to lose him the minute I leave.  I am praying that God holds him tight!

Rena

Re: Dad's Journey Continues

Rena, I hope you received the e mail I sent you. We just never pick the time, I know Teddy picked his own and I believe our loved ones do that. It's not what you do at the end it is what you have done all these years and I am sure you have been a wonderful daughter. Take your trip home, Mom has Hospice who will be there at the drop of a call and be sure to tell Dad you love him,  that you will take care of Mom and all will be OK. Just in case though make a list of numbers for Mom and is there anyone who can come over maybe take turns being with her? Safe travel and wishing you the best.

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: Dad's Journey Continues

Rena it is hard to leave but needs must.  You have done all you can to support your dad and he will know that.  Every time I left my sister I worried I would not make it back to be with her.  I did what I could whenever I could but it was incredibly hard to leave her.

Look after yourself too.

Clare

In the stars now . . . .