The sun will be setting soon as my saga comes to closure

[alanams]

Good morning everyone,

My saga of care seems to be coming to a close.

Last Tuesday, 7/22, I had surgery in interventional radiology to address a badly leaking right biliary catheter. A longer, internal catheter to the duodenum was put in place, and the left catheter was capped. I was admitted as an inpatient for observation.
The next morning, I woke up in a pool of bile that leaked during the night. They decided that the best approach would be to restitch the PTC opening, and create an ostomy seal to capture the leakage, and then to pass a biliary bag through it (7/23).

Leakage continued, since the ostomy bag was not completely sealed, where they threaded though the biliary bag. Finally, on Friday, 7/25, they restiched the opening, made the site right catheter, ostomy bag only. The left catheter was uncapped, and has a biliary bag attached again.

I made it clear that I'm looking for a few good weeks of functionality with palliative care. I need to get my will in order, and all of the beneficiary details done. After that, I will be relieved to go to hospice.

During these last few days, I developed severe swelling on top of my feet and ankles. I thinks that it's due to lack of walking, and drinking too much water. So, I started walking outside this evening, and cut down on the water. The other issue is obtaining surgical supplies which I have scripts for, and approval from the insurance company (5 biliary bags, and 10 ostomy bags with matching flanges). Since I cannot walk to these supply places, what would be the fastest alternative to obtain these? Taxis would be prohibitively expensive.

Any suggestions would be most appreciated.

During these next few weeks, I am determined to eat pizza, Chinese food, fast food and donut varieties (things I have not done before).

Your suggestions, perspectives, and ideas would be most appreciated.

Best to all and sincere thanks for your wonderful support.

Regards, Alan

[Cb75]

Hi Alan,

I am glad that you were able to post. A bunch if us were looking for you. You may have seen the thread. Where do you live? Maybe I can help you find some help. You shouldn't be alone too much.

My advise is to do what you can when you feel well. Eat. Sleep. Cry. Read. Paint. Walk. Jump. Whatever you want. Let your soul free to experience all it can while it can. This in and of itself is healing. Studies show walking on the Grass in bare feet bring about feelings of connectedness and well being. Some say it can help the immune system.

Please of there is anything let me know. If you need to hear a friendly voice I'm always up for a chat about anything.

Sending you love,

Carm

[Voxx66]

Alan - thanks for taking the time to update us. We've been thinking of you and wondering how you were doing. My hope for you is a time to get what you need to do done and freedom from pain. I also hope you get to enjoy the foods you have been avoiding. Peace to you.

V

[CRguy]

Hello alan,
though I have been through this all many times now ...... I still really don't know what to say.

No , I know that what you face is not easy; that we all wish your future was otherwise ; that we could "fix" things ......
BUTT I don't know any good Chinese take out in New Jersey
don't know any way to say what's needed that is easy
I only know how
to tell it like it is
you be here with us and we be
doing what we feelz

to support you
transport you
make any motion to re-sort...
what you be dealin' wit

have a close friend present
be "here" with us any time and always
be free from pain
eat pizza and Chinese and donuts and McFastFood
tell your pharmacy to add on a delivery charge and send your supplies... and stop by for a loaded pizza, on you, and share it with the delivery guy.

and be at peace with yourself
and know that you are loved across the ethersphere
and know that we will meet again
and know that your life IS the best one you could live .... NO disclaimers, NO regrets....

You are simply you, and the best one this forum will ever see .....
BUTT if you still wish to be with us and post and talk,

WE are here and stand by you and support you
ALWAYS on the Journey
ALWAYS .... in Harmony my friend

CRguy

[WifeOfMike]

Alan,
I hate meeting in this manner. But I would like to add a few comments, since you asked. I hope they help

Get your "paperwork" in order then take a deep breath & put that away. Your wishes will be granted
Try & enjoy anything you want, bar nothing (except maybe a quick check with DR to make sure something you eat won't create immediate issues, you may regret.... IE: gas, diarrhea, nausea???)
Spend some time enjoying nature & the gifts most take for granted- a bird, breeze, sunrise/ sunset, stars
Say everything to anyone you want. Hold NOTHING back. Save nothing for later
Ask Dr's for anything that can bring comfort & disallow pain of any type
Surround yourself with a loving support system of live folk you care for
Come here ANYTIME YOU WANT....... we will be here.....& will hold your hand, hand you a box of Kleenex (cyber of course) and send hugs as much as you need

Lighting candles in your honor

(((BIG HUG)))
Vicki

[Kathleen808]

Alan,
So good to have you check in. Along with the others I hope you feel good about your things getting in order and then do as you please. Praying you can be pain free.
We are here for you as you go forward.
Aloha,
Kathleen

[jgall]

Alan, good to hear from you. I wish the news were better.

Do you have family or friends that can help? If not, Chris is not working...maybe he could run some errands for you?

Julia

[Marian1961]

Good morning, Alan. I was glad to see you post, not so glad to read your news. I'm sorry for all you have endured the last few weeks. You wrote that you would enter Hospice in some weeks ahead. Have you considered having at home Hospice services now? The Hospice folks may be a source to help you get the supplies you need without expense of taxi service. You may also check with the social worker at the hospital or call your local chapter of the American Cancer Society. In my area they do have volunteers to help people. I hope you eat everything you want, do the things that matter to you and have more quality time than you imagine.

[BrownBagger]

You've always been admirably stoic, Alan, and I really respect that about you. I'm sure if one of our members is close by, they will be happy to help you get your supplies. Are you still in NYC?

You've really fought the good fight, my friend, and I hope you've still got some fight in you, moving forward. As others have said, and you suggested, enjoy yourself in the days and weeks to come.

[NWgirl]

I believe you can just order your ostomy supplies from an supplier and they will ship them directly to your home - it's pretty quick, I usually have my supplies within a few days of ordering. I use Byram Healthcare @ 1-877-902-9726. There are other suppliers in case this one doesn't take your insurance. Most suppliers take all the big name insurers. Since these are ostomy supplies, I'm assuming any place like Byram would stock whatever you need.

Please know you are in my thoughts and prayers. I hope you are able to feel comfortable physically and at peace emotionally. I hope you are in a place you want to be and are surrounded by those who love you. There are many here thinking of you during this difficult time.

[Jack&KatiesMommy]

Hi Alan:
So good to hear from you! I cannot answer your questions...but just wanted you to know that I have been praying for you. Thinking of you all of the time.
Cynthia

[Hall0731]

Alan,

I am too far away to help you with picking stuff up. I use edgepark for my medical supplies. I get them next day and shipping is free. I am glad to see you post. We have all been worrying about you. I hope you can get to a point of being pain free. I would check in as someone else said with hospice coming early. I too need to get my will done. I am not going anywhere right now, but don't know what the future holds.

Sending hugs and prayers your way Alan. Hang in there. we are here for you.


Teresa

[juliej]

Alan, both Edgepark and Byram will ship medical supplies to your home (free shipping and discrete packaging). It's handy getting them delivered right to your door.

https://www.edgepark.com/
http://www.byramhealthcare.com/

You are in my thoughts and in my prayers. Know that you are loved well by many.

[big mike]

I commend you on your the strength and will to do things your way as you face this chapter and round in the fight . My name is Mike and I live in the Paramus area of Jersey we don't know each other one have we met but if you do need some help drop me a line and if I can help or assist you in some way I will. I love pizza fried chicken chinese burgers dogs you name it I'll eat so I like your style my first thoughts would be food as well.
Again no Bullshit if you need ask and if I can help I will
God Bless
Stay strong and as positive as you came
Mike

[Nester]

So sad Alan, i'm in hospice too.
I'll wait for you on the other side, greedy to meet you.

You're a lovely brave person.