How about a thread for people not recently diagnosed?

foxhd
foxhd Member Posts: 3,181 Member

This forum has helped so many new people learn information, make decisions, and cope because of the support of others. Anyone who has been here  has benefit from this network. Newer people have reached out to each other and found they aren't alone.

But I was thinking, there are a ton of us at stage 3 or 4, who have been fighting our cancers for much longer. We've had our nephrectomies. We've been on trial drugs, approved drugs, and maybe radiation. We have chosen our caregivers and have either achieved NED or our prognosis is questionable.

Lap vs.open nephrectomy, contrast vs. no contrast or which upcoming trial drug availability is not our focus. Quality of life issues are. Do we retire? Go on social security disability? How about one last vacation with our loved ones? Maybe decisions need to be made about what to do with our most valued possessions. For example, Should I sell off my Harley or my guitars now? I don't want to burden my wife with those problems when I'm gone. But on the other hand, they are a part of what defines me. Do I really want to give them up?

Our lives have forever changed and our needs are often more philosophical in nature. Coming to terms with limited life expectancy, end of life issues, even celebration of how well we have done is different for those of us who have been through so much. I think that this is evident when you see people drop off this forum. Their needs have changed and become more personnal rather than clinical.

So, what do people think? Maybe a separate thread for issues of limited longevity, or lifestyle adaptations, or end of life issues. Anything really. Does anyone want to open a discussion?

«134

Comments

  • donna_lee
    donna_lee Member Posts: 1,024 Member
    Let me think a few moments

    before I jump in.  Those topics are what we've all dealt with, repeatedly.  And as I go into my 9th year of survival at the age of 72, everything has more emphasis.  I'll come back, later.

    Donna

  • Srashedb
    Srashedb Member Posts: 482 Member
    Excellent idea

    I really like this idea and look forward to reading and sharing.

    Sarah

  • I am alive
    I am alive Member Posts: 315
    Intriguing idea

    A thread like that would be a great place to go to bat around ideas, worries, suggestions, etc., not to mention just to vent. People facing "limited longevity" (love the euphemism) do drop off here. It's as if they are embarrassed or don't want to bring everyone else down. I've found myself wondering about the end game because no one talks about it. But then, like most everyone else, I don't want to admit that I am slowly sliding in that direction, whether I have years and years or mere months left. So there's that. I wonder, Fox, if Smart Patients is the better place to plant this thread - the conversation could be open to people with all kinds of end- stage cancers. They have a conversation for widows/widowers. Why not one exclusively for folks facing limited longevity?

  • Footstomper
    Footstomper Member Posts: 1,237 Member

    Intriguing idea

    A thread like that would be a great place to go to bat around ideas, worries, suggestions, etc., not to mention just to vent. People facing "limited longevity" (love the euphemism) do drop off here. It's as if they are embarrassed or don't want to bring everyone else down. I've found myself wondering about the end game because no one talks about it. But then, like most everyone else, I don't want to admit that I am slowly sliding in that direction, whether I have years and years or mere months left. So there's that. I wonder, Fox, if Smart Patients is the better place to plant this thread - the conversation could be open to people with all kinds of end- stage cancers. They have a conversation for widows/widowers. Why not one exclusively for folks facing limited longevity?

    I'm up for it

    Limited longevity. Or as DEATH puts it in Good Omens. "DONT THINK OF IT AS DYING YOUNG, MORE LEAVING EARLY TO AVOID THE RUSH"

    I hereby nominate this as that thread.

  • Blueraidermike
    Blueraidermike Member Posts: 25
    I am up for the conversation if you are...:)!

    I say keep the guitars and the bike until you cannot play them and then find someone who would love them and just give them away!  

    I am in this weird zone where I am trying to reduce chaos and solve as many problems for my wife and kids as I can.   This all came about cause I had a recurrence since I went NED for a few years from my stage 4 dx - it got my attention - Mike, did you forget you are a stage 4 patient.     My work level has drascially increased...I run sales for a technology company, I am working my butt off trying to close more deals, trying to pile up cash so if I end up disabled or pass on I will know in my heart I have done all I can to position them without the burden of worrying about money.    This has given me a new goal, something to strive for - it feels risky and kinda fun.   My wife thinks I am insane but along for the ride. 

    Its a strange tension we live in, no one could really understand it.    This thread may be breaking new ground.   Usually I come to this site for a bit lighter side of kidney cancer (as if it exsisted) and go to SP for deeper discussion.     But up for it if you are. 

  • foxhd
    foxhd Member Posts: 3,181 Member

    Intriguing idea

    A thread like that would be a great place to go to bat around ideas, worries, suggestions, etc., not to mention just to vent. People facing "limited longevity" (love the euphemism) do drop off here. It's as if they are embarrassed or don't want to bring everyone else down. I've found myself wondering about the end game because no one talks about it. But then, like most everyone else, I don't want to admit that I am slowly sliding in that direction, whether I have years and years or mere months left. So there's that. I wonder, Fox, if Smart Patients is the better place to plant this thread - the conversation could be open to people with all kinds of end- stage cancers. They have a conversation for widows/widowers. Why not one exclusively for folks facing limited longevity?

    topic on smart patients

    After over 35  years in health care, my clinical experience is extensive. I know policies and procedures, and how clinicians make decisions. So after I retired I just stayed on this forum. I've shared alot of information but haven't asked for much advice. For me using smart patients is too much like being at work. Very appropriate for most people though.

  • Billy's Wife
    Billy's Wife Member Posts: 52

    I am up for the conversation if you are...:)!

    I say keep the guitars and the bike until you cannot play them and then find someone who would love them and just give them away!  

    I am in this weird zone where I am trying to reduce chaos and solve as many problems for my wife and kids as I can.   This all came about cause I had a recurrence since I went NED for a few years from my stage 4 dx - it got my attention - Mike, did you forget you are a stage 4 patient.     My work level has drascially increased...I run sales for a technology company, I am working my butt off trying to close more deals, trying to pile up cash so if I end up disabled or pass on I will know in my heart I have done all I can to position them without the burden of worrying about money.    This has given me a new goal, something to strive for - it feels risky and kinda fun.   My wife thinks I am insane but along for the ride. 

    Its a strange tension we live in, no one could really understand it.    This thread may be breaking new ground.   Usually I come to this site for a bit lighter side of kidney cancer (as if it exsisted) and go to SP for deeper discussion.     But up for it if you are. 

    Fox,
    You are a true trail

    Fox,

    You are a true trail blazer.  I hope you don't mind if I weigh in as a care giver in a been there done that capacity. When my husband faced the 'limited longevity' time of his life, it occurred to me that we are all in 'limited longevity'.  The difference is that stage 4 cancer patients 'know it'.  They know it and suffer it a million times over, scan after, scan...drug after drug... treatment after treatment.  It is cruel and inhuman.  The brave and the strong reach for the guitars in their lives and try to take those bike rides or whatever makes them happy as often as they can.  For my husband it was two last Jets games in a wheel chair--tailgate and all.  Then his last fishing trip with his three year old Grandson in tow as his sons took care of him as much as they did the three year old. His bravery and sheer stubbornness took my breath away as I saw myself as one of those that would just crawl into bed at that juncture. He allowed me to write down his recipes even though he knew why I was doing it.  He was worried about our finances, I know, because he kept trying to buy more life insurance undeterred that no company would touch him then.  He went out on disabilty.  He collected some of his social security and I am so grateful that he did that because it was so little compared to how long and hard he worked for us.

    You are warriors.  You are brave and courageous facing the lion each day.  You get knocked down and get right up again with hope, joy and encourgaement for fellow patients. In his last month my husband wrote a note to a woman who was newly diagnosed with lung cancer.  

    Since he is gone I do the things you speak of.  I think about who to give my things to.  I plan out my last wishes so that my kids won't have to.  I am in my early 60's but there are no gurantees for any of us.  Having gone through it with him, I feel the limited longevity so personally.  Its hard to be here with a broken heart. 

    I wish I could have lightened his load more than I did.  I wish I could lighten all of yours and all of your families and every cancer patient that ever was. I wish more people would talk about it like this because no one does.  That is why you are a trail blazer once again, Fox.

     RCC is a beast but you are the beast fighters!! Each person finds their own way to the end of that road we all dread.  My husband left in a noisy room filled with his family and friends just the way he liked it!  Except for the 'leaving part' he would be happy with it.  I pray every day that it was just the beginning for him.  And I pray every day for all of you too.

    I hope you don't mind my two cents worth--- I am always aware that I am only second seat. 

    With Love and Hope,

    Arleen

     

  • foxhd
    foxhd Member Posts: 3,181 Member

    Fox,
    You are a true trail

    Fox,

    You are a true trail blazer.  I hope you don't mind if I weigh in as a care giver in a been there done that capacity. When my husband faced the 'limited longevity' time of his life, it occurred to me that we are all in 'limited longevity'.  The difference is that stage 4 cancer patients 'know it'.  They know it and suffer it a million times over, scan after, scan...drug after drug... treatment after treatment.  It is cruel and inhuman.  The brave and the strong reach for the guitars in their lives and try to take those bike rides or whatever makes them happy as often as they can.  For my husband it was two last Jets games in a wheel chair--tailgate and all.  Then his last fishing trip with his three year old Grandson in tow as his sons took care of him as much as they did the three year old. His bravery and sheer stubbornness took my breath away as I saw myself as one of those that would just crawl into bed at that juncture. He allowed me to write down his recipes even though he knew why I was doing it.  He was worried about our finances, I know, because he kept trying to buy more life insurance undeterred that no company would touch him then.  He went out on disabilty.  He collected some of his social security and I am so grateful that he did that because it was so little compared to how long and hard he worked for us.

    You are warriors.  You are brave and courageous facing the lion each day.  You get knocked down and get right up again with hope, joy and encourgaement for fellow patients. In his last month my husband wrote a note to a woman who was newly diagnosed with lung cancer.  

    Since he is gone I do the things you speak of.  I think about who to give my things to.  I plan out my last wishes so that my kids won't have to.  I am in my early 60's but there are no gurantees for any of us.  Having gone through it with him, I feel the limited longevity so personally.  Its hard to be here with a broken heart. 

    I wish I could have lightened his load more than I did.  I wish I could lighten all of yours and all of your families and every cancer patient that ever was. I wish more people would talk about it like this because no one does.  That is why you are a trail blazer once again, Fox.

     RCC is a beast but you are the beast fighters!! Each person finds their own way to the end of that road we all dread.  My husband left in a noisy room filled with his family and friends just the way he liked it!  Except for the 'leaving part' he would be happy with it.  I pray every day that it was just the beginning for him.  And I pray every day for all of you too.

    I hope you don't mind my two cents worth--- I am always aware that I am only second seat. 

    With Love and Hope,

    Arleen

     

    Arleen

    I also tell people all the time that we are all going to die, I just know what from... I think spouses and family caregivers have a good reason to use this thread. Your issues are unique. What better preparation can you have than to learn from others who experienced a similar situation.

  • foxhd
    foxhd Member Posts: 3,181 Member

    I am up for the conversation if you are...:)!

    I say keep the guitars and the bike until you cannot play them and then find someone who would love them and just give them away!  

    I am in this weird zone where I am trying to reduce chaos and solve as many problems for my wife and kids as I can.   This all came about cause I had a recurrence since I went NED for a few years from my stage 4 dx - it got my attention - Mike, did you forget you are a stage 4 patient.     My work level has drascially increased...I run sales for a technology company, I am working my butt off trying to close more deals, trying to pile up cash so if I end up disabled or pass on I will know in my heart I have done all I can to position them without the burden of worrying about money.    This has given me a new goal, something to strive for - it feels risky and kinda fun.   My wife thinks I am insane but along for the ride. 

    Its a strange tension we live in, no one could really understand it.    This thread may be breaking new ground.   Usually I come to this site for a bit lighter side of kidney cancer (as if it exsisted) and go to SP for deeper discussion.     But up for it if you are. 

    Giving things away.

    Blueraidermike, I've already given away a '31 ford coupe street rod basket case. I'd been collecting parts for over 20 years. It was to be one of my retirement projects.

  • I am alive
    I am alive Member Posts: 315
    foxhd said:

    Giving things away.

    Blueraidermike, I've already given away a '31 ford coupe street rod basket case. I'd been collecting parts for over 20 years. It was to be one of my retirement projects.

    Thoughts

    Arleen,

     Mind? Are you kidding? Your contribution is priceless! Please keep adding value to our jottings. Do you mind elaborating on how your husband died? Surrounded by noisy family and friends? I like the idea of that. Like an Irish wake, only the deceased hasn't quite deceased yet. I wouldn't mind going out like that - no hushed voices, just laughter and chatter and music and the dog gets free reign. Did you purposely invite family and friends for that day (or few days) because you knew your husband would be dying very, very soon? That would be an interesting choice, and one I might pursue, depending of course on the circumstances at the time.

    Mike,

      What a wonderful husband and father you are. Working in such a driven manner must help you focus on the here and now and is probably a great way to deal with the cancer.

    I find myself eyeing over-stuffed bureau drawers and closets and the dreaded basement and I just know in my bones I've got to get ON IT and clear that crap out while i can. I consider it a gift to my husband and daughter.

    I also want to check out the local hospice facilities now, when I'm clear-headed and feeling fine, to get a feel for what is offered. I've even considered volunteering there to look the monster Inthe eye, so to speak. My beloved dog died in my arms recently, but beyond that I haven't had a close-up look at death and I'm curious. I want to know what to expect. It makes it less fearful.

    Having been on drugs and experienced the side effects, I cherish how normal I feel off them. The hardest decision we all will probabky have to make is the one Djinnie has made - do we drop the drugs for quality of life considerations, knowing full well what that probably implies?

    And Fox,

     You trail blazer, thank you for opening thIs discussion. You are fearless.

  • Jan4you
    Jan4you Member Posts: 1,330 Member

    Fox,
    You are a true trail

    Fox,

    You are a true trail blazer.  I hope you don't mind if I weigh in as a care giver in a been there done that capacity. When my husband faced the 'limited longevity' time of his life, it occurred to me that we are all in 'limited longevity'.  The difference is that stage 4 cancer patients 'know it'.  They know it and suffer it a million times over, scan after, scan...drug after drug... treatment after treatment.  It is cruel and inhuman.  The brave and the strong reach for the guitars in their lives and try to take those bike rides or whatever makes them happy as often as they can.  For my husband it was two last Jets games in a wheel chair--tailgate and all.  Then his last fishing trip with his three year old Grandson in tow as his sons took care of him as much as they did the three year old. His bravery and sheer stubbornness took my breath away as I saw myself as one of those that would just crawl into bed at that juncture. He allowed me to write down his recipes even though he knew why I was doing it.  He was worried about our finances, I know, because he kept trying to buy more life insurance undeterred that no company would touch him then.  He went out on disabilty.  He collected some of his social security and I am so grateful that he did that because it was so little compared to how long and hard he worked for us.

    You are warriors.  You are brave and courageous facing the lion each day.  You get knocked down and get right up again with hope, joy and encourgaement for fellow patients. In his last month my husband wrote a note to a woman who was newly diagnosed with lung cancer.  

    Since he is gone I do the things you speak of.  I think about who to give my things to.  I plan out my last wishes so that my kids won't have to.  I am in my early 60's but there are no gurantees for any of us.  Having gone through it with him, I feel the limited longevity so personally.  Its hard to be here with a broken heart. 

    I wish I could have lightened his load more than I did.  I wish I could lighten all of yours and all of your families and every cancer patient that ever was. I wish more people would talk about it like this because no one does.  That is why you are a trail blazer once again, Fox.

     RCC is a beast but you are the beast fighters!! Each person finds their own way to the end of that road we all dread.  My husband left in a noisy room filled with his family and friends just the way he liked it!  Except for the 'leaving part' he would be happy with it.  I pray every day that it was just the beginning for him.  And I pray every day for all of you too.

    I hope you don't mind my two cents worth--- I am always aware that I am only second seat. 

    With Love and Hope,

    Arleen

     

    Arleen, so beautifully said,

    Arleen, so beautifully said, so thoughtful and sweet!

    How nice of you to stay on this forum to be supportive.

    Just wanted to tell you that and to send you a warm HUG!!

    Jan

  • Bellweather
    Bellweather Member Posts: 102
    Trying to be a better man

    Fox, it is quite unique that you truly write what most of us limited longevity folks are thinking on a daily basis.   I have been working on helping more people who have very little.  Giving clothing to the poor, cash to the homeless, mentoring young men trying to fjnd their way etc.  These deeds are then conflicted with saving for my wife's future, getting my daughter's through high school and college, trying to mend my relationship with my oldest daughter and my son in law,  making memories with family and friends and last but not least, entertaining myself.  All the while I am reporting any and all physical issues to my doctor in preparation for LTD benefits and at the same time playing the corporate game for promotions and bonuses. It is all quite confusing in an organized way.

    With the exception of preparing for LTD, I have found myself grateful to know that I have limited life expectancy as it has forced me to live life in a manner that should have been obvious long ago.  I still make plenty of mistakes,  still have regrets, but I am getting better.  I struggle with discussing these thoughts with my wife as I know it is difficult for her, so I truly appreciate the ability to put it out on the board.  In the end, one only has to read the daily news to understand that tomorrow is not guaranteed and that we should count our blessings for still being here today.  I hope it does not offend anyone, but the way I see it, it is for the grace of God that we have had the opportunity to play in this world in the first place.  I pray that his mercy and forgiveness will help all of us through this journey called life and the chapter named cancer.

    I too drop off of the forum to live, only 

    to return and benefit again.  I can only hope that my posts benefit others like yours and the other trail blazers on this site have benefited me. 

     

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    Not sure if I qualify in this group

    But I am stage 3, so I am putting in my 2 cents!

    Even though I am stage 3, I have not had any recurrences as yet. However my chances of recurrence are up to 50%.

    This is my problem...and I touched very briefly on another post. I worry also as to how I am to care for the ones I leave behind. This is my second marriage, no children together. I have 2 grown children from my previous marriage. Before I was diagnosed, we happened to have a discussion as to "what if". My hubby admitted that he would find another partner immediately. Everyone has their opinion on what is acceptable/not acceptable. That is fine...but here is the problem. I have a decent pension. Since we have been together, I have financially supported this household - even working 2 jobs, doing without a car when things got really bad, because my hubby has 4 children to support. He got laid off, still made child support payments, and then there were the astronomical legal fees. Basically for the past 5 years, I have covered all living expenses. (I do not have a large income). When I got diagnosed I looked into more detail regarding my pension. As it is, he will get all of the pension. I cannot change that. I have an opportunity to cash out my pension on my 55th birthday. That way I can invest, and make sure that I look after my children. Don't get me wrong....I love this man very much, but my children are my children - who I also love very much. Money changes people. But, my hubby doesn't ever talk about my illness or my future possibilities. That is how he copes. But, I also want to make sure that he also has some kind of financial security if I am no longer around. I don't know how to best figure out this dilemma.

    Also, he smokes in the house. Even though the oncologist specifically told him that it will increase my chances of recurrence. I don't even know where to go with that part. My mother was a heavy smoker....I understand how the addiction grips you. My mother also was talked to by her doctor about smoking around my father - and she continued to do so. My husband keeps saying he is going to quit, but it never happens. He has his own stresses, I get it. I don't want to spend my life being angry (and hurt), so I just pray for the best outcome. But sometimes I really feel like I am coping with it all alone. I don't want to worry my children (they have their own problems|), don't want to sound whiney, don't want to keep talking about my cancer to close friends. So I have started seeing a psychologist. It does help.  But it is still weighing heavy on me. I keep praying that the right answers reveal themselves to me.

    Reading the posts here, I am very touched with everyone's worries and concerns. And there is comfort that I am not alone in my worries.

     

  • Allochka
    Allochka Member Posts: 1,022 Member
    Jojo61 said:

    Not sure if I qualify in this group

    But I am stage 3, so I am putting in my 2 cents!

    Even though I am stage 3, I have not had any recurrences as yet. However my chances of recurrence are up to 50%.

    This is my problem...and I touched very briefly on another post. I worry also as to how I am to care for the ones I leave behind. This is my second marriage, no children together. I have 2 grown children from my previous marriage. Before I was diagnosed, we happened to have a discussion as to "what if". My hubby admitted that he would find another partner immediately. Everyone has their opinion on what is acceptable/not acceptable. That is fine...but here is the problem. I have a decent pension. Since we have been together, I have financially supported this household - even working 2 jobs, doing without a car when things got really bad, because my hubby has 4 children to support. He got laid off, still made child support payments, and then there were the astronomical legal fees. Basically for the past 5 years, I have covered all living expenses. (I do not have a large income). When I got diagnosed I looked into more detail regarding my pension. As it is, he will get all of the pension. I cannot change that. I have an opportunity to cash out my pension on my 55th birthday. That way I can invest, and make sure that I look after my children. Don't get me wrong....I love this man very much, but my children are my children - who I also love very much. Money changes people. But, my hubby doesn't ever talk about my illness or my future possibilities. That is how he copes. But, I also want to make sure that he also has some kind of financial security if I am no longer around. I don't know how to best figure out this dilemma.

    Also, he smokes in the house. Even though the oncologist specifically told him that it will increase my chances of recurrence. I don't even know where to go with that part. My mother was a heavy smoker....I understand how the addiction grips you. My mother also was talked to by her doctor about smoking around my father - and she continued to do so. My husband keeps saying he is going to quit, but it never happens. He has his own stresses, I get it. I don't want to spend my life being angry (and hurt), so I just pray for the best outcome. But sometimes I really feel like I am coping with it all alone. I don't want to worry my children (they have their own problems|), don't want to sound whiney, don't want to keep talking about my cancer to close friends. So I have started seeing a psychologist. It does help.  But it is still weighing heavy on me. I keep praying that the right answers reveal themselves to me.

    Reading the posts here, I am very touched with everyone's worries and concerns. And there is comfort that I am not alone in my worries.

     

    I am sorry for posting in

    I am sorry for posting in this thread, because I'm not the one with diagnosis and my fiance was diagnosed only recently.

    But Jojo, your post has moved me very much. First of all , hugs to you. I know that it can be hard when everything is on your shoulders. I was in the same situation with my former husband, it is very trying.

    hold on, and you can always count on support on this board. You are agreat mom, not wanting to bother your children with your problems. But as a grown-up daughter, I can assure you that I myself would be very happy to support my mom in trouble. Your kids love you as much as you love them, so you can rely on them! And definitely on your friends, this is what friends are for! 

    And as for pension - I don't know if I can give any advise, but I guess leaving smth to your kids as well would be only normal and correct thing to do. Can you split the pension among all your family (kids, husband) somehow?

    Hugs again,

    Alla

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    Allochka said:

    I am sorry for posting in

    I am sorry for posting in this thread, because I'm not the one with diagnosis and my fiance was diagnosed only recently.

    But Jojo, your post has moved me very much. First of all , hugs to you. I know that it can be hard when everything is on your shoulders. I was in the same situation with my former husband, it is very trying.

    hold on, and you can always count on support on this board. You are agreat mom, not wanting to bother your children with your problems. But as a grown-up daughter, I can assure you that I myself would be very happy to support my mom in trouble. Your kids love you as much as you love them, so you can rely on them! And definitely on your friends, this is what friends are for! 

    And as for pension - I don't know if I can give any advise, but I guess leaving smth to your kids as well would be only normal and correct thing to do. Can you split the pension among all your family (kids, husband) somehow?

    Hugs again,

    Alla

    Thank you, Alla.
    I was just

    Thank you, Alla.

    I was just going to try and delete that post. I am a little embarassed and sometimes I feel I should just be able to manage everything.

    Thank you for your kind words!

     

     

  • Allochka
    Allochka Member Posts: 1,022 Member
    Jojo61 said:

    Thank you, Alla.
    I was just

    Thank you, Alla.

    I was just going to try and delete that post. I am a little embarassed and sometimes I feel I should just be able to manage everything.

    Thank you for your kind words!

     

     

    No, you shouldn't be

    No, you shouldn't be embarrassed! You should be proud!

    You provide for your family, you care about your children and husband, you had a serious disease, you support us all on this forum and bring so much positivity!

    You are a great person, and we will be more than glad to try and support you at least just a little bit. 

  • mrou50
    mrou50 Member Posts: 389 Member
    I agree with the need for this

    I think it would be nice to have a thread for this subject.  I have a hard time talking with my wife about it because it upsets her and I don't like to do that.  I also can't decide when it is time for me to stop working, or how to get disability etc.  I never realized how difficult this is, not the emotional part I knew that would be difficult, the part about preparing for the end.  I am trying the drugs but they make me so sick some times I ask myself if it is worth it?  I am doing all I can in the time I have left whether that be years or months that is not for me to decide but I would like a place where I can talk openly about it and not upset anyone in the process. 

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    Like the idea

    I have always had the desire, since finding this site three years ago, to have the discussions you are describing Fox.  My husband was diagnosed at Stage 4.  For me, the need to discuss these issues was imperative.  I really did not feel comfortable on CSN because of all the focus being on "positivity"..blah blah blah.  I know I am not alone in these feelings.  Noone here wants to be a downer.  Odd as it may seem, when we are feeling our worst is when we need eachother the most.  Perhaps these subjects will only be comfortable for members who are Stage 3 and 4. 

    Does anyone have any ideas of how to make this work?  Right now, there is so much input from all of you on various topics right here on this thread.  I wouldn't want to see some of it lost or not commented on.  How do all of you feel about those huge threads?  I sometimes have trouble with them because they are so long and comments are not added to the end of the list, but at the point where a person hit reply.  How can we give each persons comment the attention that it deserves from the group?  It's not like we can manipulate the thread, like they do on Smart Patients, and start a new thread of it's own.  We could ask CSN to make a new category, but of course it would be open to all and not just our RCC friends.  We could also label threads by starting with "Stage 3/4" - .......".   I think that would get the attention of others and perhaps Stage 1 or 2 wouldn't want to read it.  I will never forget reading a Stage 1 patients comment on how depressing Stage 4 threads are.  The person went on to comment that they wished there was some kind of warning.  I felt personally insulted reading that, but yet I understood.  The concerns are different.

    Personally, I can relate to all the topics raised so far.   I am very glad that you brought this up Fox.

    Annie

     

     

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    Jojo61 said:

    Not sure if I qualify in this group

    But I am stage 3, so I am putting in my 2 cents!

    Even though I am stage 3, I have not had any recurrences as yet. However my chances of recurrence are up to 50%.

    This is my problem...and I touched very briefly on another post. I worry also as to how I am to care for the ones I leave behind. This is my second marriage, no children together. I have 2 grown children from my previous marriage. Before I was diagnosed, we happened to have a discussion as to "what if". My hubby admitted that he would find another partner immediately. Everyone has their opinion on what is acceptable/not acceptable. That is fine...but here is the problem. I have a decent pension. Since we have been together, I have financially supported this household - even working 2 jobs, doing without a car when things got really bad, because my hubby has 4 children to support. He got laid off, still made child support payments, and then there were the astronomical legal fees. Basically for the past 5 years, I have covered all living expenses. (I do not have a large income). When I got diagnosed I looked into more detail regarding my pension. As it is, he will get all of the pension. I cannot change that. I have an opportunity to cash out my pension on my 55th birthday. That way I can invest, and make sure that I look after my children. Don't get me wrong....I love this man very much, but my children are my children - who I also love very much. Money changes people. But, my hubby doesn't ever talk about my illness or my future possibilities. That is how he copes. But, I also want to make sure that he also has some kind of financial security if I am no longer around. I don't know how to best figure out this dilemma.

    Also, he smokes in the house. Even though the oncologist specifically told him that it will increase my chances of recurrence. I don't even know where to go with that part. My mother was a heavy smoker....I understand how the addiction grips you. My mother also was talked to by her doctor about smoking around my father - and she continued to do so. My husband keeps saying he is going to quit, but it never happens. He has his own stresses, I get it. I don't want to spend my life being angry (and hurt), so I just pray for the best outcome. But sometimes I really feel like I am coping with it all alone. I don't want to worry my children (they have their own problems|), don't want to sound whiney, don't want to keep talking about my cancer to close friends. So I have started seeing a psychologist. It does help.  But it is still weighing heavy on me. I keep praying that the right answers reveal themselves to me.

    Reading the posts here, I am very touched with everyone's worries and concerns. And there is comfort that I am not alone in my worries.

     

    financial planning

    Dear Jojo,

    I am so glad you posted.  You are one of the most lovely, compassionate, and kind people on this site.  You give so much to others.  It is perfectly fine for you to share your concern or worry with us.  Let us be here for you, as you have been for us.

    If I may suggest:  Make an appointment with a financial planner.  We just went to one and it was helpful because it brought up all the things that my husband does not talk about, nor want to talk about.  AND, it wasn't done by me.  Yeah.  The planner went over everything with us...all assets, debts, wills, trusts, social security options, inheritance....and the list goes on. 

     

    Annie

  • I am alive
    I am alive Member Posts: 315
    Disability info

    M,

      There is anextensive conversation about disability insurance on Smartpatients.com. Just type disability in the search field. Or you can type "how to apply for disability." Tons of info, some you probably didn't know you need to know.