Is it worthwhile?

MinnieK

donna_lee said:

And what if it's not RCC in the pancreas?

I've got you beat by a year.  I'm at 7 years 6 months since DX, but who's counting.  Since mine had already invaded the liver, my regular tests have always been of chest, abdomen, and pelvis.  I have an assortment of cysts in both the pancreas and what remains of my liver.  They are stable.  I have an hemangioma in the liver that was confirmed upon a subsequent US.

Have you had regular CT's for comparison?  Have you had the lab tests to show blood chemicals that would indicate cancer? Have you had a PET to confirm cancer?

I'll give you an example of someone who had a right to opt for medically assissted suicide (legal in Oregon) this past week.  My bro-in-law. He was dx'd the first week October with Anaplastic Thyroid Cancer. Survival rate -0-, anticipated death within 3-5 months.  He had to be intubated, a breathing stoma installed, lost the ability to speak, eat-drink-swallow, and the tumor doubled in size within 5 1/2 weeks.  When Dx'd, he signed a POLST, elected to not have any life sustaining treatments in the event of a heart attack or stroke, made his choices with his wife, had hospice care until there was nothing more that could be done, and came home to die.

What I'm saying, is don't emotionally or physically give up at this point in your life.

Donna

Hi Donna

What can I say, you've gotten me beat not only by years but by diagnosis as well. But I'm not suicidal, I'm just down for a few counts. I am so aware that there are people so much worse off than I am. Does that however exclude me from the right to be sad, to be a little less courageous than I should be?

I will get up I will fight I will be brave and strong and true but I will also be sad.

Minnie

MinnieK

srbelle1 said:

excuse my bluntness but is it

excuse my bluntness but is it worthwhile???? 6 years without disease and now some spots is NOT death sentence from the research I have done and that is limited. I do not have kidney cancer; my husband does and yes, for him, it is worthwhile. 

For his wife, sons and granddaughter, it is worthwhile. For his sisters, brother, nephews, nieces and his friends, yes, it is worthwhile!

i will get off my soapbox now but your question really took me off guard this morning.

hoping you were only in shock, Sarah

Hi Sarah

Why is this question so strange? i really don't understand that. I simply asked people who have been there who are there and who are fighting if they believe it is worthwhile. And I've been blessed with honest responses varying from "Pull yourself together you whining Whimp" to "I have also felt this way" and "Here's some advice for when you feel this way" On that particular day I felt particularly sad and I believe that i'm entitled to some sadness, some regret at the loss of my perceived wellness.

And the WORST part is, nobody has yet said that I DO have mets! So maybe this self-pity-party was for no cause at all!!! 

So yes I was in shock and yes I will carry on and yes I will have sad and despondend days, because I am human.

With love

Minnie

dhs1963

MinnieK said:

Hi Sarah

Why is this question so strange? i really don't understand that. I simply asked people who have been there who are there and who are fighting if they believe it is worthwhile. And I've been blessed with honest responses varying from "Pull yourself together you whining Whimp" to "I have also felt this way" and "Here's some advice for when you feel this way" On that particular day I felt particularly sad and I believe that i'm entitled to some sadness, some regret at the loss of my perceived wellness.

And the WORST part is, nobody has yet said that I DO have mets! So maybe this self-pity-party was for no cause at all!!! 

So yes I was in shock and yes I will carry on and yes I will have sad and despondend days, because I am human.

With love

Minnie

The thing is we want to hope

Those of us in this group are fighting...fighting for our lives.  We want to be cancer free.  Some have made it, others have not.

I know I have thought that it is not worth it at times....when I am feeling down.  It happens.  When it happens what do I do?  I find something nice to do for myself.  Maybe I eat some bacon...(mmm....bacon).  Or go for a drive.  Or play a game with my daughter.

I do not know where you are in life.  I am still young (49.975), and while I have medical issues (msRCC; Cornary Artery Disease), mentally I am at 100% (or 99.97%).  I am paid for my brain, and that is as good as ever.

And I have to live, because my wife, as much as I lover her, will not teach my Daughter physics.  That is my job.  And to do that, it is worth it.  For me.

Frank302

dhs1963 said:

The thing is we want to hope

Those of us in this group are fighting...fighting for our lives.  We want to be cancer free.  Some have made it, others have not.

I know I have thought that it is not worth it at times....when I am feeling down.  It happens.  When it happens what do I do?  I find something nice to do for myself.  Maybe I eat some bacon...(mmm....bacon).  Or go for a drive.  Or play a game with my daughter.

I do not know where you are in life.  I am still young (49.975), and while I have medical issues (msRCC; Cornary Artery Disease), mentally I am at 100% (or 99.97%).  I am paid for my brain, and that is as good as ever.

And I have to live, because my wife, as much as I lover her, will not teach my Daughter physics.  That is my job.  And to do that, it is worth it.  For me.

worthwhile

During my darkest days I never entertained the thought that fighting this disease might not be worthwhile .

We all get down and disgusted at times . After all , cancer is a nasty business .  Living , as a whole , is not a nasty business unless we choose to make it that way . Every day is a gift and I plan to live as many of them as I can no matter how hard the fight might get .

angec

MinnieK said:

Hi Angec

The wonderful thing about all the responses is that no-one said, "Don't talk like that! " The advice and responses differed but at least people listened. I find in my family that being sad is not part of the cancer protocol.

I will deal with whatever comes my way to the best of my ability but sometimes my knees will weaken and then it is good to have somewhere to go to vent, blame or just be sad.

With gratitude

Minnie

Minnie, I do understand

Minnie, I do understand fully!  You can vent all you want!  Cancer is no joke, and we cannot pretend it isn't sad or doesn't get us worried, depressed or feeling down at times. My mom has cancer and believe me, the whole family is very scared and down at times.  But we will not show that to mom, for the obvious reasons. We let her be sad for a short time, but after that, we do all we can to keep her busy, positive and try to make her laugh. Maybe your family is doing the same thing.  Mom  is doing fine right now.  The one met she has left is stable.  Worry never really leaves us, but we learn to live with it and don't let it consume us, it is not good for the immune system.   When your knees weaken and you feel all alone, come here and we will be right there laughing when you laugh and crying when you cry!  But we will always pick you up and get you on your way!  We are here for you, anytime! I am sending you a virtual hug!   It will be ok, Minnie!

donna_lee

Frank302 said:

worthwhile

During my darkest days I never entertained the thought that fighting this disease might not be worthwhile .

We all get down and disgusted at times . After all , cancer is a nasty business .  Living , as a whole , is not a nasty business unless we choose to make it that way . Every day is a gift and I plan to live as many of them as I can no matter how hard the fight might get .

Minnie

I think that's what we all want to see and hear.  That you haven't given up on yourself.  We have all been down at times, some a bit lower than others.  And I admit, I've been there, too.

If you go back to read your first post, most of us interpreted it as you were willing to shrug and consider quitting, without even knowing if the cysts found in the pancreas were cancerous.

Re the tests given: A CBC and CMP will tell the Dr. if the pancreas is functioning within normal ranges.  And the same tests, given over a period of months will tell if the changes are something to be concerned abou.

My M-I-L is confronting the same issue; but at age 97, has chosen not to have confirmation tests, which would mean an all day trip up and back to a regional med center.  So her Dr. is working off symptoms, a CT done in June and labs and check-up every 2-3 months. Right now her treating PC says 95%, it's cancer.  But she doesn't want anything-surgery, drugs, or radiation.  And at 97, who can fault her.

What you need is a big dose of HOPE, a family who will roll with what you are experiencing, and some of us old grouches on this board who have sent you a wake up call.  We'll stay with you and nip you on the heels as you chase after forever.

All best wishes.

Donna

donna_lee

donna_lee said:

Minnie

I think that's what we all want to see and hear.  That you haven't given up on yourself.  We have all been down at times, some a bit lower than others.  And I admit, I've been there, too.

If you go back to read your first post, most of us interpreted it as you were willing to shrug and consider quitting, without even knowing if the cysts found in the pancreas were cancerous.

Re the tests given: A CBC and CMP will tell the Dr. if the pancreas is functioning within normal ranges.  And the same tests, given over a period of months will tell if the changes are something to be concerned abou.

My M-I-L is confronting the same issue; but at age 97, has chosen not to have confirmation tests, which would mean an all day trip up and back to a regional med center.  So her Dr. is working off symptoms, a CT done in June and labs and check-up every 2-3 months. Right now her treating PC says 95%, it's cancer.  But she doesn't want anything-surgery, drugs, or radiation.  And at 97, who can fault her.

What you need is a big dose of HOPE, a family who will roll with what you are experiencing, and some of us old grouches on this board who have sent you a wake up call.  We'll stay with you and nip you on the heels as you chase after forever.

All best wishes.

Donna

And it could be worse...

I have a cat, who adopted our office and truck shop over 12 years ago.  I've been his prime caregiver and we've been thru turning him into it,  various infections and meds, lacerated corneas and torn ears from defending his turf, radiation of the thyroid for Hyperthyroidism, and too many ticks and fleas to count.  I think his ultimate insult was last week when I found an engorged tick on the edge of his anus.  He knew it was there, and wouldn't get off my lap until I checked every part of him.

So your day could be worse.

Smile

MinnieK

donna_lee said:

And it could be worse...

I have a cat, who adopted our office and truck shop over 12 years ago.  I've been his prime caregiver and we've been thru turning him into it,  various infections and meds, lacerated corneas and torn ears from defending his turf, radiation of the thyroid for Hyperthyroidism, and too many ticks and fleas to count.  I think his ultimate insult was last week when I found an engorged tick on the edge of his anus.  He knew it was there, and wouldn't get off my lap until I checked every part of him.

So your day could be worse.

Smile

You're so right!

Hi Donna

My cat who's about 99 in human years is suffering from out of control diabetes! She's really really old but still loves a cuddle,

her food and her spot in the sun. When I'm really really sorry for myself i look at her and it gives me a quick pick-me-up!

 

Thanks for your kind words. Today I'm better. The sun is shining, the summer is with us and, as Robert Frost says, "But I have promises to keep,/And miles to go before I sleep"!

MinnieK

dhs1963 said:

The thing is we want to hope

Those of us in this group are fighting...fighting for our lives.  We want to be cancer free.  Some have made it, others have not.

I know I have thought that it is not worth it at times....when I am feeling down.  It happens.  When it happens what do I do?  I find something nice to do for myself.  Maybe I eat some bacon...(mmm....bacon).  Or go for a drive.  Or play a game with my daughter.

I do not know where you are in life.  I am still young (49.975), and while I have medical issues (msRCC; Cornary Artery Disease), mentally I am at 100% (or 99.97%).  I am paid for my brain, and that is as good as ever.

And I have to live, because my wife, as much as I lover her, will not teach my Daughter physics.  That is my job.  And to do that, it is worth it.  For me.

Hope

Hi dhs1963

Thank you for reminding me. My husband is a great father, a good cook but his interpersonal relationship skills suck! That of itself is a very good reason to fight!

I'm 59 and I have been very lucky. i was just lulled into a false sense of security, I had thought i was going to be cancer free forever. Now I'm slightly challenged and

after a pause, I'm OK.

Thank you for your well-considered words

Minnie

MinnieK

foxhd said:

Well?

I just kinda wonder. MinnieK, is life worth it to you? Have you made a decision? You implied that you have. I hope you accept what ever is going on, challenge it and do well.

Choices!

Hi foxhd

i have made some good and some less good choices in my life. The choice to join this forum was indeed a good one. Sometimes you just need to ask difficult questions and then you ask experts. This site is a space filled with experts who have taken the time to share their particular wisdom with me and I am very very grateful.

Today I'm OK, if slightly embarrassed by my negativity. But then I comfort myself, it's part of the whole living thing! i have stuff to do and a family to organise.

And, as i was reminded, nobody has said it IS a met! i might have freckles-on-the-Pancreas and THEN i'll be sorry for having been so miserable!

Thank you for taking the time to talk with me.

In gratitude

Minnie 

 

dhs1963

MinnieK said:

Hope

Hi dhs1963

Thank you for reminding me. My husband is a great father, a good cook but his interpersonal relationship skills suck! That of itself is a very good reason to fight!

I'm 59 and I have been very lucky. i was just lulled into a false sense of security, I had thought i was going to be cancer free forever. Now I'm slightly challenged and

after a pause, I'm OK.

Thank you for your well-considered words

Minnie

my pleasure

Just enjoy today.  Do something fun.

We can die a little each day waiting for bad news or we can live!

a_oaklee

Your question

Minnie.  I have a question for you.  I am curious.  My question is:

If you were "face to face" with a cancer patient or their spouse, would you ask the same question?  The same words?

I am not being sarcastic, I would really like to know your answer.  Perhaps if you ponder the appropriateness, you will understand why the question "hit a nerve" with some people here. 

You have every right to ask that question, but I have to tell you that since I read it, it haunts me.  I never, ever, ever gave any consideration to whether or not our quest for NED was worthwhile.  My husband and I just don't think along those lines.  We've never considered doing nothing, or giving up. 

You believe your question is about you.  But you asked us to search our hearts and souls for the value of life, the companionship of our loved one....  It truly hurt me when you said my husband who has Stage 4 RCC is just going to die anyway.  I really didn't want to think about that possibility. 

I think you must be unaware of how life can still be worthwhile living at a Stage 4 diagnosis.  It is certainly different, and difficult and yes, we wish we could go back in time.  BUT, life is still good because of the love of family, and all the other things that bring joy to a person. 

I am so impressed by my husbands strength and courage and his willingness to fight. 

I know you don't feel well and are scared.  I do hope that you remain healthy.  Its normal to feel sad and I do hope that if it is prolonged, or you feel like giving up, that you reach out for help from your family, friends, doctor.  Keep reading here.  There are some wonderful people participating to help others.

MinnieK

a_oaklee said:

Your question

Minnie.  I have a question for you.  I am curious.  My question is:

If you were "face to face" with a cancer patient or their spouse, would you ask the same question?  The same words?

I am not being sarcastic, I would really like to know your answer.  Perhaps if you ponder the appropriateness, you will understand why the question "hit a nerve" with some people here. 

You have every right to ask that question, but I have to tell you that since I read it, it haunts me.  I never, ever, ever gave any consideration to whether or not our quest for NED was worthwhile.  My husband and I just don't think along those lines.  We've never considered doing nothing, or giving up. 

You believe your question is about you.  But you asked us to search our hearts and souls for the value of life, the companionship of our loved one....  It truly hurt me when you said my husband who has Stage 4 RCC is just going to die anyway.  I really didn't want to think about that possibility. 

I think you must be unaware of how life can still be worthwhile living at a Stage 4 diagnosis.  It is certainly different, and difficult and yes, we wish we could go back in time.  BUT, life is still good because of the love of family, and all the other things that bring joy to a person. 

I am so impressed by my husbands strength and courage and his willingness to fight. 

I know you don't feel well and are scared.  I do hope that you remain healthy.  Its normal to feel sad and I do hope that if it is prolonged, or you feel like giving up, that you reach out for help from your family, friends, doctor.  Keep reading here.  There are some wonderful people participating to help others.

My question

Dear a-oaklee

To answer your first question, yes i did. My dear dear friend who recently passed away from colon cancer. When she was diagnosed, I made her a promise I would walk the walk with her and one day as we sat musing about her disease, and it's, by then, inevitable conclusion, i asked her in those words exactly, was/is it worthwhile. She was quiet for a very long time and then she said that if it had not been for her children, she would have given up long ago. That was her story.

Perhaps you are right, perhaps it was an inappropriate question. i never meant to cause pain or give offence

However you advise me to reach out and stay connected to this forum. Yet you consider my question "inappropriate". Please let me know how and where there is connectedness and perhaps solicitude if a heart felt question causes pain and anquish and is understood as death tiding for a much loved husband.  

a_oaklee

MinnieK said:

My question

Dear a-oaklee

To answer your first question, yes i did. My dear dear friend who recently passed away from colon cancer. When she was diagnosed, I made her a promise I would walk the walk with her and one day as we sat musing about her disease, and it's, by then, inevitable conclusion, i asked her in those words exactly, was/is it worthwhile. She was quiet for a very long time and then she said that if it had not been for her children, she would have given up long ago. That was her story.

Perhaps you are right, perhaps it was an inappropriate question. i never meant to cause pain or give offence

However you advise me to reach out and stay connected to this forum. Yet you consider my question "inappropriate". Please let me know how and where there is connectedness and perhaps solicitude if a heart felt question causes pain and anquish and is understood as death tiding for a much loved husband.  

thanks for responding

Thankyou for responding and answering my question to you.  I'm very sorry for the loss of your dear friend.  I'm glad for your friend that she felt her struggle was worth it for her family.

 

I did not say your question was inappropriate.  I wanted YOU to think of it's possible appropriateness in light of some of the responses that you received.  I was honestly trying to get you to see things from my perspective as a Stage 4 patient/caregiver.  And that is what you were asking.   I absolutely do not think that you were trying to be offensive and I know you are not responsible for any sadness that I might have felt.  Just because I might not be comfortable looking at the dark side, doesn't mean it shouldn't be talked about. 

The thread you started has gotten quite a bit of attention.  Thats a good thing, and I would call that "connectedness".  I recognize your "heartfelt" sincere question, and if I ever feel badly reading something here, it's because of my own personal painful war against cancer.  It's not your responsibility.

Keep reading. Keep writing.  Best Wishes.

cran1

When I feel sorry for myself

When I feel sorry for myself I go to the kids with cancer section.......

MinnieK

cran1 said:

When I feel sorry for myself

When I feel sorry for myself I go to the kids with cancer section.......

Great minds!

Hi there cran1

And that is exactly what I did yesterday! Sometimes it does one good to realise there are some people who'se problems make your own seem trite.

Djinnie

MinnieK said:

Great minds!

Hi there cran1

And that is exactly what I did yesterday! Sometimes it does one good to realise there are some people who'se problems make your own seem trite.

Possible Reocurrence?

Hi Minnie, 

Don't be too hard on yourself, we all know what it is like when you first receive a cancer diagnosis. It is akin to being whacked across the back of the head with a metal club. Who thinks straight at that point, we all go into shock. After being clear for six years you started to feel a sense of confidence in your immune system. The possibility of a reoccurrence would send you reeling,leaving you temporarily depressed and deflated. I know that  from my own experience after having a reoccurrence after ten years. I thought that at the ten year mark that I had it licked:(

You know that no matter what it takes you will fight it, when it comes down to it the survival instinct is innate to all of us. We all get down from time to time, it's allowed! I hope your tests prove you have nothing to worry about:)

All the best

 

Djinnie x

MinnieK

Djinnie said:

Possible Reocurrence?

Hi Minnie, 

Don't be too hard on yourself, we all know what it is like when you first receive a cancer diagnosis. It is akin to being whacked across the back of the head with a metal club. Who thinks straight at that point, we all go into shock. After being clear for six years you started to feel a sense of confidence in your immune system. The possibility of a reoccurrence would send you reeling,leaving you temporarily depressed and deflated. I know that  from my own experience after having a reoccurrence after ten years. I thought that at the ten year mark that I had it licked:(

You know that no matter what it takes you will fight it, when it comes down to it the survival instinct is innate to all of us. We all get down from time to time, it's allowed! I hope your tests prove you have nothing to worry about:)

All the best

 

Djinnie x

THANK YOU

Hi Djinnie

Thank you for your kind and understanding words. In restrospect I believe not only was I in shock, I was soooo angry as well.

Perhaps I should have paused before I wrote my question because it may well have appeared extremely tactless. I needed some sort of affirmation that my feelings were OK that everybody had felt like that at some time or other. However my phrasing appeared to imply that not only was I ready to give up but that I felt that everybody's fight was futile. But as they say, hindsight is 20/20 and I received some very good advice despite my hasty question.

I'm much more positive now and grateful that there is so much that can be done.

In Gratitude

Minnie

donna_lee

MinnieK said:

THANK YOU

Hi Djinnie

Thank you for your kind and understanding words. In restrospect I believe not only was I in shock, I was soooo angry as well.

Perhaps I should have paused before I wrote my question because it may well have appeared extremely tactless. I needed some sort of affirmation that my feelings were OK that everybody had felt like that at some time or other. However my phrasing appeared to imply that not only was I ready to give up but that I felt that everybody's fight was futile. But as they say, hindsight is 20/20 and I received some very good advice despite my hasty question.

I'm much more positive now and grateful that there is so much that can be done.

In Gratitude

Minnie

Gunfight at the OK

I know we've all had a situation in which we fired from the hip (mouth) and asked questions later. Not to say it's always OK, and I've had to apologize to my husband more than once, but I'm reminded of the old saying, "Lord give me patience, and I want it right now."

With cancer, we want answers and solutions, no frustrations, no anxiety, etc.

Minnie, you and I are of an age where we can be called tough, old broads.  Let's show them how tough we can be.

Gool luck in your pursuit of answers, and have a Happy Thanksgiving.

Donna

cran1

MinnieK said:

Great minds!

Hi there cran1

And that is exactly what I did yesterday! Sometimes it does one good to realise there are some people who'se problems make your own seem trite.

Hang in there M. Also no one

Hang in there M. Also no one can tell you how you should feel either. Happy Thanksgiving.