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How much time is left? What to expect?


Guest JanEK

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Guest JanEK

Hello everyone,

I'm new to this website and glad to find it.

Given my dad's condition (3B/4, pulmonary problems includng major pleural effusions and infections, constant production of phlegm, rapid weight loss, very low energy, starting to feel shoulder pain which the doctor says is referred pain from his cancer), I'd appreciate if anyone could share their experience with how long someone in this stage of the disease can last. The doctor has said it could be a matter of weeks, or maybe "single-digit" months. Dad has declined chemo and chosen to use hospice services. We both want him to spend the rest of his time here in my home, and I'll be the primary caregiver, with the help of hospice.

Dad's major fear is feeling suffocated at the end. The doctor says that can be avoided, with medications and O2, which he's already using.

Many thanks to anyone who can share their stories wth me.

JanEK

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Sounds like his doctor has covered everything with you and your dad.

I don't think any of us could tell you how long your dear dad has left on this earth. Everyone is different.

If Hospice is involved then they should be talking to you and sharing with you what they have experience during the ending days with cancer patients. You can also go into our

"The Path Less Traveled" Forum where you might find some helpful information regarding hospice and other last days issues.

Best to you and your dad.

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Jan, I'm sorry you have to be here but glad you found us. Connie is right, none of us can tell you how long your dad has...but please know this disease can cause complications that could take him tomorrow or he may possibly be around longer than his doctor expected. Hospice should be able to help you with many of the questions you are asking. Just make the most of the time you have left with him, but it sounds like you are already planning to do that.

I also see that your dad was just diagnosed so I know you are still in that world-spinning-out-of-control state. Once your mind figures out that this isn't just a bad dream it will be easier to figure out what needs to be done. Good luck with this journey and hang in there!

Karen

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JanEK I amsorry we have to meet this way but glad we have met. I can understand your dads Point of view about treatment Respect That.

The List idea is a good start. Is there Health insurance to pay for Nursing staff to come in and possibly free up a little of your time each day or every 2-3 days so you can keep up your Business? That is my first thought about care and assistance. I never had to deal with Hospice when My wife passed, But if you click on search above red line you can do a search for hospice posts. there are a lot of posts here about that subject.

2) your Dads Business. What is it and does he have anyone that could help run it a sa consultant perhapsPossibly employee who knows his business? I do not know what His company is, But this is an idea and would help both of you right now. Just a thought though to look into.

3) about Dads house. Does house need work to go on market? If yes maybe a churchmember or members could help with any work that may need to be done? Then get the paperwork in order to sell the house.

THE MOST IMPORTANT THING IS TO SPEND AS MUCH QUALITY TIME WITH YOU R FATHER THAT YOU CAN SHOULD HAVE POSTED FIRST IN LETTER BUT!? REMEMBER YESTERDAY, CHERISH TODAY, AND PRAY FOR TOMORROW. TELL YOUR FATHER YOU LOVE HIMEVERYTIME YOU GET THE CHANCE. WE NEVER KNOW WHEN THIS DISEASE WILL TKE THE ONES WE LOVE! :cry:

I capped all tht because it is the most important part of this whole post I have written. Sending Prayers and thoughts for you and Father and Family. this is a hard road to go down but we will help when we can as much as we can. You have to take small steps before you start running.

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Jan:

Please do be sure to check out The Path Less Travelled Forum for lots of info. on hospice as Connie suggested -- there is a hospice experiences thread that is now a sticky at the top of the page; there is another experiences thread not too far down from that -- lots of pros and cons are discussed that might help you prepare. A little further down, Frank did a 4-part info. (I think that's how many parts there are) thread on hospice organizations that's really good too to start out with.

There's more there, but a look-see at these might at least help you get started with some questions for your Tuesday hospice meeting, especially if you're tight on research time.

Linda

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Guest JanEK

Thank you to everyone for the welcomes. Yes, I should make a list of what I need and need to do. My dad has been retired for a long time.

My inability to do my work has been mental; I'm a writer and my mind simply starts to spin when I attempt to work on my assignments. Also, my father needs my help with everything, he's so weak, so the interruptions are frequent. Fortunately my publisher has been willing to defer some deadlines, but my income is suspended, too.

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My Dad was diagnosed July 28. pretty much the same as your Dad but urinary tract infection, not lung.

He was at his worst early in June. pain, confusion, couldn't even stand up. Mom told him if he wasn't gonna make it, just die now. The pain was awful. The probablem was low sodium in the blood. Fixed that, he does Ok; than another problem, fix that ...than another; and so it goes. I've heard others call it a roller coaster. The good news is that the pain is controlled and Dad can get some joy out of the time he has now.

I've been able to get info here that helps my Dad a lot. I can't answer your big question, but I've learned here some good ways to deal with the bits and pieces as they crop up.

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Jan,

I don't think anyone can answer your question.

It really depends on progression and your dad's individual body and how it fights, or doesn't fight, what is happening to him.

There have been members here who have chosen not to undergo conventional treatment and I know one member who lived almost 2 years with an extensive diagnosis and no treatment.

Your dad may choose to do treatment at some later date as well.

I know how scary the uncertainty can be. Just know that we continue to be here for you- please keep posting and keep us posted.

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Dear JanEK, through hospice or a social worker, it may be possible for you to get "respite" help. Taking care of a loved one, or even caretaker for a non-family member can really take its toll, physical and mental. That's why there are respite services, something to give you a day for yourself, to keep it together which is so hard to do.

As difficult as it must be to write right now, you are a wordsmith and maybe you can take comfort in expressing yourself and your feelings about what is happening to you. The disease is devastating and can leave you "speechless", but use the gift God has given you and find release. love, friend, hang in there.

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jan, my dad also had cancer that caused him shoulder pain. after my dad went on oxygen, it was about 3 months. i am thinking of you. remember everyone is different. he does not have to feel the suffocation. your doctors will take care of that. lots of love, mirrell

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Oh Jan. Your post just makes me cry. I am so so sorry that you have to go through this. I have no answers to your questions, but want you to know I am thinking of you.

I pray alot so...Dear Lord, please wrap your arms around Jan and her dad and other family members as they continue their cancer journey. Please grant them peace, renenwed health and strength, and your guiding way.

God bless,

Jen

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  • 2 weeks later...

I can understand Dad's decision. I almost made the same decision myself a year ago. My cancer was stage IV at diagnosis, causing pleural effusions and had already spread to the bones and brain. Doctors said it was terminal (6-9 months) and chemo, at best, would only give me a couple of months. I thought "what's the point", why spend my last months in misery being sick from the chemo?

Well, after a second opinion and lots of research, I started on Tarceva, and subsequently Gemzar/Carboplatin, Avastin, & Alimta. The side effects of those drugs have been very minor for me, and I've been able to enjoy a great quality of life for over a year. Sure, I've had a few setbacks, but most of the time I've felt pretty good. In fact, today I feel stronger and better than I did thirteen months ago. Although the cancer is still there, and still progressing, I feel that I've had a longer and better quality of life than I would have without the therapy.

So while I do understand how your dad feels, and certainly support anyone's decision to just "let it be", I want folks to know that all chemo is not bad. Also, did they drain Dad's pleural effusion? I felt so much better after mine was drained.

You and dad are in my prayers.

Kim

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My father's only symptom over a year ago was the shoulder pain. They did an x-ray and found the first tumor. He had surgery, radiation and two different rounds of chemo before going on hospice. He died peacefully at home last Tuesday. He was on a nebulizer and O2 so there was no suffocation. He just simply stopped breathing and his heart stopped beating shortly thereafter. At that point, though, he didn't know what was going on. He was already unresponsive. Noone can say how long he's got with you, but my father was only on hospice a week prior to his death. I hope you have much more time with your father. Good luck, and many prayers are coming your way.

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Hello,

My mother had the huge pleural effusion also. They would drain it and it would come right back. So, she was always very short of breath. She was on 3 liters of oxygen but still felt short of breath. She came to live with me 7 months before she passed away. That is also when she got on the oxygen. The more I was with her I realized she was having anxiety attacks and who wouldn't when they are having trouble breathing! So, I had the doctor prescribe something for the anxiety and that was a huge help. I was so afraid also that when the end came she would be struggling to breath but she seemed to just go to sleep I guess because her oxygen levels were getting so low. So, even though it was terrible losing her it wasn't the horrible death I was fearing. So, if your dad isn't on anti-anxiety meds you might want to check on getting him some.

Hope this helps.

Rosemary

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