How about a thread for people not recently diagnosed?

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

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 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. 

Blueraidermike said:

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 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

Billy's Wife said:

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, 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

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 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 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!

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. 

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.

 

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