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Struggle with hope vs. reality


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Back after a long stretch away for some much needed advice. My Dad is not doing well and the cancer has spread to his bones and spine and his adrenal glands are enlarged. He saw no improvement after his last chemo and mentally is just not himself.

Doctor offered options of different chemo. drug, or calling in hospice. Dad decided to continue with chemo, doc said about 20% chance and a matter of months with no treatment.

My problem is my guilt because I feel like I have given up hope, the doctor has told my dad "I cannot cure you" and I unfortunately understand now how devastating this beast is. For those of you that have been in this situation, how do you handle your feelings. My dads quality of life is horrible and I hate to see him suffer. I pray for a miracle but have to be realistic otherwise I will not be able to cope with whatever lies ahead.

Sorry to be so long,

Shannon

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Shannon:

Coping with your feelings isn't something I can comment on right now very well. But, cudos to your dad for deciding to continue with chemo. As Don said, there is always hope as long as options exist and that is so true. If you have read any of my posts of late, you might understand when I ask: but how is your dad coping with his quality of life? If he is coping well and not physically suffering anything more than temporary side effects (that the docs. and meds/treatment can't address), that's enough.

The reality is that this disease offers many challenges to those affected. The reality also is that there are many forks in that road, many of which lead to rewarding times (I learned that here, and only here, by the way).....never give up a fighting spirit of hope, no matter how it seems in the moment.

You know, they told my mom today for the first time that she's not curable too....guess what? What I have learned here so far says that those docs. better define what that means better: there are options that provide tumour shrinkage to where the tumour is "dead" but not gone (as well as other options that depend on the particular circumstances of the individual and how they respond to their particular treatment course) -- now, is that cured? -- in my book, that counts....especially if improved quality and longevity of life is in that picture.

Don't feel guilty for feeling you've lost hope, just take a deep breath and regroup. Spend time researching options and learning from what others have done in here. Will help you bunches in helping your dad along the way.

Hugs,

Linda

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I don't remember what the chemo drug is that the doctor discussed with us. He also offered a pill, sorry, don't know the name, my step mom keeps all the notes since I live out of town. Doctor was not real keen on the pill since it had some bad side effects.

Dad sleeps most of the day except for a good day thrown in here or there. Doc does not want him left alone anymore and he is having trouble with the fact that he is not allowed to drive.

We are just so afraid he is going to burn the house down because he still smokes, depite that he cannot eat or drink most of the time.

Thank you for the prayers and your kind thoughts, I still am not holding on tight enough during this roller coaster ride. :)

Shannon

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Dear Shannon,

I don't post much anymore, but I was really taken with your words and so much understand everything you are saying.

You can probably tell from my username that I do stand for hope, and I, too, believe there is always hope. I believe that mostly because they just keep coming up with more and more things to treat cancer, and there is always the chance that the "thing" your dad needs is going to come alone.

At the same time, I also don't believe in being Pollyanna about this disease. I love what Becky (Snowflake) says: "This disease isn't for sissies." It is a devastating and not-very-hopeful diagnosis, depending on the type, stage, spread and areas of the body affected. While there are some who beat it back for a very long time and some who beat it back forever, unfortunately, well . . . you know the rest.

From what you describe, it sounds like your dad is quite ill, and his quality of life has deteriorated extensively. Nevertheless, additional treatment is his choice! My husband was the same way. He just had to try and keep on trying. He always had that hope that he would get that miracle and make it. I remember when my mother was dying that I said something in her hospital room (don't remember what it was) that my husband thought was inappropriate. He pulled me aside and said, "Don't say that. She looks like she is asleep, but if she can still hear you, she still has HOPE." Of course, I was then ashamed of whatever it was I said, but he was absolutely right!

So, the best advice I've got is that I think you should prepare yourself, as best you can, for the worst, but always, always, always EXPECT that miracle because your dad is betting, by getting even sicker from chemo, that he might get that miracle. He needs to know that you believe it IS possible.

Much love and great big hugs!

Peggy

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Shannon,

First of all, I will most certainly pray for you and for your dad. This is a beast of a disease, and I am so sorry that you have to be hit by the wave. Life is so very precious.

My dad was going through much of the same thing, emotionally, and I encourage you to never lose hope. Don, in the SCLC forum, is an AWESOME resource for the emotional part. He advised me well, and I am starting to see some improvement in my dad...one of the things he said, "OK, so you have cancer, so you get busy living, or you get busy dieing. If you are a fighter, everyone around you will fight as well."

Please, keep your chin up and know we are all thinking of you here.

God bless,

Jen

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Shannon -

I completely understand. My mom's quality of life declined rapidly (bone met pain primarily -- and lots of morphine)- and yes we could have tried many other chemo options, yet we as a family chose not to.

I know that most people on this board will say "keep trying" -- but we had very frank conversations with my mom and our oncologist about her quality of life and the realities - Is it worth it to try a new chemo with side effects when the best case may be to gain a few months, is "stable" a blessing when quality of life is terrible? etc. For us the answer was no.

My mom was bed bound, she couldn't do any of things she enjoyed -- even reading and knitting were tough due to all the pain meds. My mom wanted to see her first grandchild born-- once she did that, she was comfortable with dying. She always said "I don't want to leave anyone, but I can't stand to see all of you see me this way - and I don't want to be remembered like this."

A great peace came once the goal was simply to make her comfortable... no more scans, no more painful car rides, etc. YET, she made that final decision.

If your dad wants to keep trying - you HAVE to support him....yet it is ok to be realistic TO YOURSELF. :) This is called anticipatory grieving. It is one of the things that hospice talks quite a bit about. You are not quitting on him.

I am sorry that you have to go through this.

I will pray for comfort and peace for you.

Love,

Holly

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The thing about Hope is that it can be found even after it is lost, you just have to look for it. Twenty percent is better odds than "one-in-a-million" and people buy lottery tickets every day on much larger odds!

Read through the stories here, listen to what those above me are saying, and take it all in. We ALL know what "reality" is and we all hope like hell that we are in the OTHER group. Don't shortchange him, he's still got fight in him and it isn't the size of the dog in the fight, it's the size of the fight in the dog.

Get over the little pity party. That's those damn monsters in your brain taking over - you HAVE to beat them back. While there is still a chance, there is still hope. You just need to open your heart again and believe. Life isn't all about science and proven facts, life is about mystery and the unknown as well.

Hang in there, you will be okay, no matter what happens, you'll make it. Buck up and be your daddy's girl while the opportunity is presenting itself - and never underestimate the power of prayer.

xxoo,

Becky

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The thing is... You will figure out how to let the 'realist' and the 'hope' coexist. They can. They will argue from time to time, but you can keep hoping things for your Dad. Even if he CHOOSES to discontinue treatment, you will find hope. It just takes new forms. You might think that realistically the odds aren't good, but you will still HOPE for him. It's not always a balance, but somehow, at least I found, that both parts of me stuck around. And I could function with both and learn from both.

For now, your job is to support the decisions he makes. And it sounds like you're doing that. The deterioration is so difficult to watch. But it sounds like some great people have 'got his back.'

((((hugs)))) to you.

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The thing is... You will figure out how to let the 'realist' and the 'hope' coexist. They can. They will argue from time to time, but you can keep hoping things for your Dad. Even if he CHOOSES to discontinue treatment, you will find hope. It just takes new forms. You might think that realistically the odds aren't good, but you will still HOPE for him. It's not always a balance, but somehow, at least I found, that both parts of me stuck around. And I could function with both and learn from both.

Wow! Val - great writing - great words! It's amazing how we know things in our head but sometimes just can't put it into words with impact. You've done it well, Val.

Love,

Peggy

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Thank you all for your wonderful words of inspiration and wisdom. I feel like my dad is still stuck in the denial phase. Don't know if it's him or combo of meds and illness but I am afraid he has not accepted what is happening. Not that I want him to accept it and give up but accept it and make sure we take advantage of our time, however long. I think it is even more difficult because he is not very spiritual and between that and his denial I'm not sure how to make sure I say and do the things I need to if these are his last few months...make sense?

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Let him go thru this and deal with it his way.

You can deal with it your way. Do all the things and say all the things you've always wanted to. Have no regrets.

ASK him what he wants to do daily- if it is nothing that day, then he is at peace with that.

Have chats with him about things you want to talk about, it might get him to open up about things he may want to talk about. Then again, there may be nothing he wants to talk about- and he is at peace with that.

I personally believe that we don't need to help someone get "ready" to die. My dad and I NEVER talked about it, never accepted that he wouldn't survive the cancer, even though as educated and intelligent people, we "knew" if treatment didn't work, that he would die.

I talked to him all the time about everything, old times and things I had always wanted to know. I took him everywhere I could think of when he was having a good day and we shared good times, made memories and smiled alot. We never talked about him dying.

I ended everyday, every conversation, every hug and kiss as if it were our last.

My dad never had any revelations or last words or advice for me. I think he must have felt there was nothing left to say, he had shown his love thru his actions over the years, he knew I knew he loved me...what more did he have to say?

We never talked about him dying, we didn't ready ourselves for it, we just knew...and we celebrated every day that he was alive- even if I was just sitting at the foot of the sofa where he was laying and we sat silently watching the Discovery channel.

Don't worry about "doing" or "saying" the right things.

Do what is in your heart, say what is on your mind and in your heart, and treat each new day as a gift.-- advice we should all live everyday.

I'm saying lots of prayers for you both.

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P.S.

I left off the most important part to my long drawn out reply!!

There is always HOPE. As long as there is breath, as long as there are options, HOPE exists.

Ask him what he wants, and support him in that.

hugs,

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Katie,

Thanks so much, I guess I felt like I should be doing something more. A few months ago I purchased a bracelet from childrenshospice.org with a quote from 11 year old Dustin who didn't win his battle with this beast...it says "today is a gift...have fun" It's funny but this bracelet has helped me so much because I just look at it and everything is put into perspective.

Dad and I watch Bass fishing and thanks to the Outdoor Network I might have a 2nd career int he BassMaster tournament! :D

Thanks again for sharing your experiences with me, it was very helpful.

Shannon

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I am finding it really difficult to respond to your post and it's because I have had the some of the same feelings and fears as you expressed.

Everyone that has responded has given you wonderful, loving, sage advice.

Prayers for your dad, ((((Shannon))))

Libby

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  • 2 weeks later...

I'm sorry you are going through all of this. I feel/felt the same way with my mother's cancer. The doctor would always tell her it's not curable etc. And she would always say, "I'm going to be that one odd percentage who will beat this," I felt that I always had to be more reasonable in order to cope. Miracles don't always mean a cure, they could be the smallest things. Talk to your father about the options, but I'm sure you will repect his decisions. I send my love.

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The Hope in us says that the researchers will find a cure and we will be able to have access to it before something bad happens. Like someone passing away with Lung Cancer.

The reality of this disease is that with such a high morbidity rate there are not enought survivors to help with research and not enough dollars to fund research. The medical world currently has a goal to get Lung Cancer to the state of where it is treated like a chronic disease such as Diabetes. Then they canwork for a cure. The reality is there is no cure and we can only Hope for one soon. I know how hard this is. My wife went from 60 to 0 in 15 minutes basically. SHe passed the same day she was supposed to start a new treatment plan.

With that being said my advice is remember yesterday, Cherish today; and pray for tomorrow. God has a plan for all of us but he does not tell us this plan until he is ready. and like Katie said; Hope for the best and prepare for the worst.I will say prayers for you and your family during this difficult time.

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Hi Shannon,

My heart goes out to you. You got some wonderful advise here.

Just want you to know that I am praying for a miracle too. You are a wonderful daughter and your dad loves you so much. Keep those wonderful memeories of times past and make new ones for the present time. For the furture there is always hope.

Maryanne :wink:

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