How about a thread for people not recently diagnosed?

I am alive said:

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.

I think a-oakley has a point....maybe any threads of this category should be started with a heading such as

Stage 3/4 conference - enter at your own risk!

There are lots of comments here already. We are all trying to do our best, trying to sort out our lives, our families' needs, and finally, our needs. Sometimes there is anxiety and anguish and a reluctance to share our very deep fears and worries. This is definitely a wonderful place to do this. No judgement, only a deep understanding.

Jojo61 said:

I think a-oakley has a

I think a-oakley has a point....maybe any threads of this category should be started with a heading such as

Stage 3/4 conference - enter at your own risk!

There are lots of comments here already. We are all trying to do our best, trying to sort out our lives, our families' needs, and finally, our needs. Sometimes there is anxiety and anguish and a reluctance to share our very deep fears and worries. This is definitely a wonderful place to do this. No judgement, only a deep understanding.

 

I think this is a good idea.  There have been some times I've thought about posting something but don't want to scare the newbies.  I had joined ACOR, now Smart Patients, a couple of years ago, but stayed away for awhile because a number of people there were in dire straits and it scared and depressed me.  Once I became Stage IV, I began participating there and less here because of the depth of information there.  But, as I said, many of them have advanced disease and I had to drop off of there for a lttle while because we lost several people in a short period of time.  It feels a little safer here because it doesn't happen often.

I thought about the same thing as Annie, that maybe we should start some separate threads where titles start with "Stage IV".  Adding Stage III might also be good.  It seems to make sense to do that becaue this thread could get very long over time.  A couple that I thought about starting are "Stage IV: Life Changing Decisions" and "Stage IV: Starting Disability" and "Just became Stage IV:  Now What?"  Those are just examples.

I also agree that sometimes you just want to vent or express fear and feelings of depression without feeling guilty for doing so because you feel like you are supposed to be upbeat and positive.  Everyone should feel safe in expressing their feelings whatever they are.

Fox is always coming up with good ideas like this one.

Kathy

foxhd said:

old timers thread

Family dynamics. Wow. Jojo, you know WE love you. Double from me. Seeing your picture is the best part of logging on. Everyone appreciates your sincerity. Thanx.

Getting disability should not be a problem. Iceman knows the rules better than I but, it was easy for me. I walked into the local social security office. Told the lady that I was stage 4 kidney cancer. She arranged a phone interview for 2 days later. In only a few weeks they dumped a few months payments into my bank account even before notifying me of approval. I have appreciated this so much. Not a ton of money but my needs are few.

Insurance is an important topic also. First, my wife is so sharp and smart. She choose the most expensive medicare options, and AARP options. So even though we paid for a month of votrient, all my medical bills have been covered. It's nice not to worry that my bills would break the family.

Annie, Texas Wedge had multiple reasons for keeping certain topics together. Even if it became long. It allowed for one to read back without trying to find multiple threads. A problem is the way responses get out of order.

I appreciate hearing any ideas that Texas Wedge had for keeping topics together on threads.  I remember so often he would tell people not to start a new thread!  Always made me smile. 

I was trying to think of a way to talk about all the things that have been brought up.  It sounds like you would like them to be random under the umbrella of "long timers".  I get that.  I'm just such an organization freak that I want to compartmentalize issues, but under a heading of Stage 4 (and 3), so that us oldtimers chime in.  I was also thinking of a way in which you could go directly to a conversation. 

So far in this thread alone......

Stage 3/4:  Longevity.  Letting go of possessions.  Providing for my family.  Life Insurance.  Disability.  Social Security.  How I want to go, when it's my time.  Choosing Hospice care. Quality of life decisions.  Living well and giving to others.  Financial decisions and planning.  Family cooperation.  Coping.  ETC.

I think we probably each have quite a bit to say about all of the above.

I actually like beginning with "Stage 3/4"....cause it makes me think of "Stage three-quarters.....the fraction"...as if it exists!  I can just hear a newbie asking what's stage 3/4?

I'm just throwing out ideas....I can happily stay right here too.

Annie

Srashedb said:

Glad you shared

JoJo:

personally, I am glad you shared; you sound like such a warm, caring person. Who can tell what the future brings but if I may be so bold, I would love to shake your hubby for saying he would find someone immediately. 

One of my biggest struggles with my husband has been over smoking , a known cause of kidney cancer. Both of us smoked for years but I stopped about 5 years ago. My husband has stopped and started since his diagnosis; I do believe he has finally given it up. Second hand smoke is bad for all of us but more so for someone who has had cancer. Your husband needs to stop smoking in your home. Maybe I am mean but my home is my safe place and I will not let anyone intrude and invade.

I don't know Canadian law but it seems like you should be able to change the beneficiary from your husband to your children. Tell him that his next woman will support him "immediately".

my apologies to you if I have crossed a line.

Sarah

Thank you for your comments, Sarah. You didn't cross the line. I understand completely where you come from. And it is the caregiver in you....the part about you that I love so much.

Firstly, I must clarify an item or two. My husband did say he would find somebody immediately...but that was BEFORE I was diagnosed. We have not discussed it since. But he is one of those men that never likes to be alone. A lot of men, I have noticed, are like that (usually the older generation). I wanted to shake him too! LOL. But I was very glad we had that discussion before (and it was JUST before I was diagnosed) because it was probably a wake up call to make sure I don't just let things flow as previously planned. I have looked at the pension thing through my lawyer and it isn't changeable. But that is okay. At least there is a way around it. I am just struggling as to the fairest way to do this.

I will work on the smoking thing. I am getting tired of it. However, there is a whole other dynamic around it. We have each had our personal struggles and challenges and I understand his. My previous marriage of 27 years was abusive and full of torment. Now, I still marvel at the peace and contentment I feel - even with our constant problems, I am very grateful for his patience and sweetness. I feel so lucky to be able to enter my home without fear...so the smoking is annoying, but nothing compared to what I lived through before. I am just trying to give you the whole picture. That being said, I must admit that I am hurt that he doesn't take my health into consideration when it comes down to it all. I believe he is in denial about the precariousness of my health.

I feel for you about your husband's smoking. I understand how you might think that he may have given up...but maybe it is just the stress that he gave in to?? I know that happened with my hubby....he didn't smoke anymore when we met. But when his family life turned out to cause him a lot of pain, it was too much for him, and he turned back to smoking. He has been through so much....and I can tell you the exact moment I saw his heart break over it. I was a little shortsighted at this time. I should have done things differently. I just wanted his pain to go away. So maybe your husband's diagnosis was too much for him and so he went back to the smoking.

Life is difficult for us all. No doubt. I know all of us here are trying our best. I continue to count my many blessings. I have said many times that I count the beautiful group of people that I have met here as one of my biggest blessings - the silver lining of this dreaded disease. Again, Foxy has performed his little miracle of giving us the opportunity of bringing us closer as a group - as a second family. This is exactly what we all need, isn't it? A safe place to vent, share and support when we don't want to burden our loved ones any further.

Much love and hugs

Jojo

Jojo61 said:

Sarah

Thank you for your comments, Sarah. You didn't cross the line. I understand completely where you come from. And it is the caregiver in you....the part about you that I love so much.

Firstly, I must clarify an item or two. My husband did say he would find somebody immediately...but that was BEFORE I was diagnosed. We have not discussed it since. But he is one of those men that never likes to be alone. A lot of men, I have noticed, are like that (usually the older generation). I wanted to shake him too! LOL. But I was very glad we had that discussion before (and it was JUST before I was diagnosed) because it was probably a wake up call to make sure I don't just let things flow as previously planned. I have looked at the pension thing through my lawyer and it isn't changeable. But that is okay. At least there is a way around it. I am just struggling as to the fairest way to do this.

I will work on the smoking thing. I am getting tired of it. However, there is a whole other dynamic around it. We have each had our personal struggles and challenges and I understand his. My previous marriage of 27 years was abusive and full of torment. Now, I still marvel at the peace and contentment I feel - even with our constant problems, I am very grateful for his patience and sweetness. I feel so lucky to be able to enter my home without fear...so the smoking is annoying, but nothing compared to what I lived through before. I am just trying to give you the whole picture. That being said, I must admit that I am hurt that he doesn't take my health into consideration when it comes down to it all. I believe he is in denial about the precariousness of my health.

I feel for you about your husband's smoking. I understand how you might think that he may have given up...but maybe it is just the stress that he gave in to?? I know that happened with my hubby....he didn't smoke anymore when we met. But when his family life turned out to cause him a lot of pain, it was too much for him, and he turned back to smoking. He has been through so much....and I can tell you the exact moment I saw his heart break over it. I was a little shortsighted at this time. I should have done things differently. I just wanted his pain to go away. So maybe your husband's diagnosis was too much for him and so he went back to the smoking.

Life is difficult for us all. No doubt. I know all of us here are trying our best. I continue to count my many blessings. I have said many times that I count the beautiful group of people that I have met here as one of my biggest blessings - the silver lining of this dreaded disease. Again, Foxy has performed his little miracle of giving us the opportunity of bringing us closer as a group - as a second family. This is exactly what we all need, isn't it? A safe place to vent, share and support when we don't want to burden our loved ones any further.

Much love and hugs

Jojo

 

I dont know how many times I tried. It seemed like every summer for about 20 years. I remember doing a gig with some vietnam vets. I complained that the guy on the bluesharp just blew me away. I put it down to smoking and told me to just stop then. Then the conversation got a little wierd and they ended up agreeing that its harder to give up fags than heroin.

I finally managed to quit using a support group. A bit like AA for smokers I guess.

Oh! Fags = cigarettes. Sorry for any confusion

thaxter said:

I'm here

I was stage IV out of the gate with a secondary tumor on my adrenal. It was four months post op that they found lung mets and I've had those same mets for over a year now. With two rounds of IL-2 in2014 they continued to grow in 2014 but I have my six month Votrient scan next week and hoping for more shrinkage sice the three month scan was so good.

continued to work part time in 2014 but retired in January and went on Medicare with my bc/bs now secondary. I am trying to make decisions based on the odds but my wife thinks I will be around for decades. financially we are actually doing better now that I retired and she wants to work another 3 years.  Trying to plan some bucket list things like a trip to U.K. but we may have to wait for my wife to get her knees replaced. A month ago she was hobbling so bad I finally got her to see an ortho doc and the steroid injections helped immensely but we don't know how long that will last. She has been bone on bone for at least three years.

After I get this ct scan I've got an annual music get together with about 50 friends for four days at a state park. In May we hope to go to Churchill Downs and also do the Ky bourbon trail. So although day to day this Votrient has me not doing a whole lot, I am trying to have a bit of fun.

was look at the menu.  Yes- a general heading of Stage 3-4 with a "specific topic" listed would help get members aimed in the right direction.  And if an individual has another "specific topic," he or she can start a new post.

 But to tell us not to mix our topics may be a bit much.  Sometimes thoughts are over-flowing and events are beyond what we want to deal with at the time.  The word "vent" comes to mind.

Enuff said.

Donna

Footstomper said:

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.

That's too funny. I've found myself when seeing something unpleasant or dealing with something unpleasant, etc. thinking "...I won't miss that..." Or when I've seen really elderly people going through dementia, or suffering terrible physical problems I've found myself thinking "...one of the benefits to getting out of here early...". My ex-wife's parents are in their 90's and their health is just awful. They seem to be waiting to die and not having a good time doing it. Still, I'm not ready to go just yet.

I don't mean this in morbid, sad way either. It actually makes me feel better.

Todd

Hi again everyone,

Thank you all for your warm responses.  I am alive asked me to elaborate on the "Irish Wake" atmosphere of my husband's passing.  As it happens we are Irish.  We live on Long Island.  He had been admitted to North Shore Hospital with pneumonia.  His oncologist told us he had days to weeks left.  The brain mets were not allowing him to fully participate in decisions.  All I knew was that what he had been experiencing was not 'peace' and I wanted him to have some pain free 'peace'.  The social worker recommended some hospices and our oldest son and I set about shopping, quickly--when they want you out of the hospital--they want you out!  I felt that it was Divine Intervention that led us to The Hospice Care Network--The Hospice Inn in Melville, NY.  It was set up more like an assisted living.  He/we had a comfortably large private room decorted with cheery wall paper.  It was a small distance from our home but soo worth the drive!  We didn't feel like we were in a hospital at all!  For eleven nights it was home. It was completely covered by Insurance. It meant alot to me that it wasn't a dreary setting because our 5 kids ranged in age from 23-32.  Though they were not children, my husband wasn't elderly, and I didn't want it to be a harder memory for them.  All of the suffering at home had been hard enough!

I learned in a Bearevement group after his passing that many believe that we die the way we live.  Some people are private and wait until the last visitor has left to die.  Others prefer to have all those they love around their bed side--more the party type person.  That was my husband to a T.  He loved giving big parties in our small yard with live music and food he made for the masses --the more the merrier. The first Sunday he was there my kids brought the coolers and all of us and some of our extended family and friends watched a Jets game in his room.  We did try to keep it down for the other residents.  His last really alert day was about 5 days before he passed --almost every one he knew showed up and he was able to recognize them and particiapte in the conversation a little.  The day he passed, in the middle of the day, he was surrounded by noisy chatter of some friends all of our  kids and his sister and her family, my father and my sister.  He just took his last breath as I held his head and we watched him enter eternity.  I have to say it was as good as it gets!!  We prayed for him and hung out a while longer. 

A comment  Jojo--At a bereavement group meeting of about 30-40 people who ranged in age from 45-75--the majority around 55-60, one man shared that his wife had given him permission to find another partner because she didn't want him to be alone.  With that other men chimed in to say that their wives too had given them permission too.  To that many of the women looked around the room and then began to share that they were not given permission by their husbands.  There wasn't one woman there who said she was given permission to find another partner.  I found this so amusing. I think its just the nature of the beast---- Women are the nurturers --we want our loved ones to be ok.  Men aren't thinking about letting us go to someone else!

Also Jojo think about seeing a financial planner as someone else said, they should be able to help you know what to do. 

One other thing--someone said they didn't want to talk about this with their spouses because they would be upset.  There's no way around the upset part.  My husband didn't want to talk about this stuff.  I just knew him and things kind of fell into place(Divine Intervention, really!)  in a way that I think he would have loved.  I think if we make some of our wishes known to our families and then trust that they will do what is best it will be ok.  The important decisions are the ones we make day to day regarding treatment and care and then the financial needs of our families as best we can.   After we are gone, arrangements and stuff is just fluff! 

Jan thank you for the Hug-

Thank you Fox and everyone for giving me a place to share. 

Arleen

We often hear when dealing with an incurable disease that they could get hit by a bus; this is said in an attempt to comfort.

and, of course, we tend to blow it off.

this morning as I contemplated my husband's disease, my younger son called to let us know that his father-in-law was fighting for his life after a major heart attack and that his heart disease is so extensive that stents won't help and that he is so weak that he may not make it. 

So, life does indeed turn on a dime. Will be heading down to help with our granddaughters and to support our daughter-in-law, hoping that he will make it home.

Sarah

Billy's Wife said:

Hi again everyone,
Thank you

Hi again everyone,

Thank you all for your warm responses.  I am alive asked me to elaborate on the "Irish Wake" atmosphere of my husband's passing.  As it happens we are Irish.  We live on Long Island.  He had been admitted to North Shore Hospital with pneumonia.  His oncologist told us he had days to weeks left.  The brain mets were not allowing him to fully participate in decisions.  All I knew was that what he had been experiencing was not 'peace' and I wanted him to have some pain free 'peace'.  The social worker recommended some hospices and our oldest son and I set about shopping, quickly--when they want you out of the hospital--they want you out!  I felt that it was Divine Intervention that led us to The Hospice Care Network--The Hospice Inn in Melville, NY.  It was set up more like an assisted living.  He/we had a comfortably large private room decorted with cheery wall paper.  It was a small distance from our home but soo worth the drive!  We didn't feel like we were in a hospital at all!  For eleven nights it was home. It was completely covered by Insurance. It meant alot to me that it wasn't a dreary setting because our 5 kids ranged in age from 23-32.  Though they were not children, my husband wasn't elderly, and I didn't want it to be a harder memory for them.  All of the suffering at home had been hard enough!

I learned in a Bearevement group after his passing that many believe that we die the way we live.  Some people are private and wait until the last visitor has left to die.  Others prefer to have all those they love around their bed side--more the party type person.  That was my husband to a T.  He loved giving big parties in our small yard with live music and food he made for the masses --the more the merrier. The first Sunday he was there my kids brought the coolers and all of us and some of our extended family and friends watched a Jets game in his room.  We did try to keep it down for the other residents.  His last really alert day was about 5 days before he passed --almost every one he knew showed up and he was able to recognize them and particiapte in the conversation a little.  The day he passed, in the middle of the day, he was surrounded by noisy chatter of some friends all of our  kids and his sister and her family, my father and my sister.  He just took his last breath as I held his head and we watched him enter eternity.  I have to say it was as good as it gets!!  We prayed for him and hung out a while longer. 

A comment  Jojo--At a bereavement group meeting of about 30-40 people who ranged in age from 45-75--the majority around 55-60, one man shared that his wife had given him permission to find another partner because she didn't want him to be alone.  With that other men chimed in to say that their wives too had given them permission too.  To that many of the women looked around the room and then began to share that they were not given permission by their husbands.  There wasn't one woman there who said she was given permission to find another partner.  I found this so amusing. I think its just the nature of the beast---- Women are the nurturers --we want our loved ones to be ok.  Men aren't thinking about letting us go to someone else!

Also Jojo think about seeing a financial planner as someone else said, they should be able to help you know what to do. 

One other thing--someone said they didn't want to talk about this with their spouses because they would be upset.  There's no way around the upset part.  My husband didn't want to talk about this stuff.  I just knew him and things kind of fell into place(Divine Intervention, really!)  in a way that I think he would have loved.  I think if we make some of our wishes known to our families and then trust that they will do what is best it will be ok.  The important decisions are the ones we make day to day regarding treatment and care and then the financial needs of our families as best we can.   After we are gone, arrangements and stuff is just fluff! 

Jan thank you for the Hug-

Thank you Fox and everyone for giving me a place to share. 

Arleen

Thankyou so much for sharing all of this information with us Arleen.  I am somewhat at a loss for words...I do so appreciate you taking the time to share these very private moments about your family, with us.  You have given me so much to think about.  When you said "it's as good as it gets"....I think your entire family was blessed with the strength and love you found within eachother, including your husband.

annie