How about a thread for people not recently diagnosed?

24

Comments

  • donna_lee
    donna_lee Member Posts: 1,041 Member
    mrou50 said:

    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. 

    Fox has done it, again...

    Raised issues we all think about and dance around.  It reminds me of the new ballad I hear on NPR-.."you can dance in a hurricane, but only in the eye."

    I'm lucky in many ways.  My husband has been by my side, if not mentally all the time, at least physically.  We are business owners and have provided insurance for our employees for over 45 years, including both of us.  I've had the liberty of taking time out of the office for the numerous surgeries and knowing that I'd have a job to come back to.  Early investments and land inheritances are now providing stable income, with funds set aside for grandkids college and and  LLC that will be there later.  And we even have to take pension Required Minimum Distributions after age 70.5

    That being said, there is still things to deal with.  As we all say, the accumulated stuff.  My husband said why don't I take something to Antiques Roadshow.  My response was I know what we have and what it's worth.  I'm not to the point I want to stop acquiring things I enjoy, but haven't sat down and made the lists to dispose of it all in a logical manner.

    Our daughter and family came to visit during Spring Break and she said I just keep acquiring more paper.  And I do.  About 4-5 years ago, I became seriously interested in genealogy (with access to the internet sources) and have been looking into various TREES. Soon, I have to begin telling the stories I have uncovered, and that will take more time.

    All of this gets complicated when other issues enter life.  My husband's mother was Dx'd with pancreatic cancer and entered her last six months the start of 2014. He was partially in denial and didn't want to have to deal with his sister and brother during the time.  So I helped take care of Evelyn and his sister was the true B_____ that she is, complaining about everything I did to make her mom's life comfortable. We're still dealing with probate, because his mother was not very effective with her planning.  The repercussions have lasted for months, as after her death, I went into a depression that had me physically ill and in bed for days.  It's taken many months, and things still aren't back to what I want to be my new normal.  The only good part was the loss of 25 pounds

    Then all hell broke loose over my birthday weekend.  Our son was diagnosed with Shingles and his youngest with pneumonia and strep infections, all the same day.  Two days later, I scratched my ear on the exterior and developed cellullitis.  It was BAD instantly and I saw someone at the after hours clinic and was put on 875mg of Augmentin twice a day.  A side effect of the drug is diarrhea; and it wiped out the gut flora, which I'm now trying to restore with pro-biotics.  And there went another 6 pounds down the toilet.  I'm finally starting to eat a little, and get more energy.  But it's slow going.

    I feel disappointed in myself for not being well.  Frustrated that I don't want to participate in some of the things I used to enjoy. Think I'm shortchanging my kids and grands for not spending more time with them.  And I know my husband wants to travel more, but I'm not up to it, now. 

    Then I look at my new driver's license and say, "Quit Griping."  I'm here, I'm alive, the last test was NED (who knows what all the tests next month will bring,), and life could be much worse.

    Don't we all try to grab the gold ring?  But remember, the merry go round has the same scenery on every trip.

    To all those who post and join in this thread, I don't profess to have answers or solutions.  Just experience and a little age.

    Take care and enjoy. Have HOPE

    Love, Donna

  • Jojo61
    Jojo61 Member Posts: 1,309 Member

    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

    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.

     

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    a_oaklee said:

    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

     

     

    Annie

    I know what you mean about having to be positive. It is very frustrating. My wife, who is a viral oncologist fergodsakes, seems wildly positive almost to the point of being in denial. My son(25) tells me I'm going to live 30 years. My daughter, at college, just seems angry sometimes at the cancer and sometimes at me for getting it. I get told I'm negative, when I feel that the best way for me to deal with this is to let it touch me lightly but honestly. If I get good news it can touch me lightly. If I get bad news, then the same. But there are times when I've just had enough, when the side effects make me wonder if its worth it. When I want to shake a fist at malign fate. and raill against the hand I've been dealt. If you cant be angry at cancer, what can you be angry with? If you cant be scared of cancer, what can you be scared of?

    I have shed tears, and I'm sure I will again. All in all, although I would'nt go so far as to recommend it to anyone, having stage 4 cancer has revealed an awful lot of goodness in an awful lot of people.

    Dammit, there I go being positive again!

  • NewDay
    NewDay Member Posts: 272
    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.

     

    Good idea

    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
    foxhd Member Posts: 3,181 Member
    NewDay said:

    Good idea

    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

    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.

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    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.

    one thread

    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
    Srashedb Member Posts: 482 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.

     

    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

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    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

    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

     

  • thaxter
    thaxter Member Posts: 124
    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.

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    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

     

    Giving up smoking

    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

  • Srashedb
    Srashedb Member Posts: 482 Member

    Annie

    I know what you mean about having to be positive. It is very frustrating. My wife, who is a viral oncologist fergodsakes, seems wildly positive almost to the point of being in denial. My son(25) tells me I'm going to live 30 years. My daughter, at college, just seems angry sometimes at the cancer and sometimes at me for getting it. I get told I'm negative, when I feel that the best way for me to deal with this is to let it touch me lightly but honestly. If I get good news it can touch me lightly. If I get bad news, then the same. But there are times when I've just had enough, when the side effects make me wonder if its worth it. When I want to shake a fist at malign fate. and raill against the hand I've been dealt. If you cant be angry at cancer, what can you be angry with? If you cant be scared of cancer, what can you be scared of?

    I have shed tears, and I'm sure I will again. All in all, although I would'nt go so far as to recommend it to anyone, having stage 4 cancer has revealed an awful lot of goodness in an awful lot of people.

    Dammit, there I go being positive again!

    Spouses

    reading some posts, I wonder if I may be denying my husband the opportunity of discussing his feelings.

    He was dx stage 4 from the get-go but as it turns out, his docs describe the cancer as very indolent. Of course, that can change since it is such an unpredictable disease.

    the months following his nephrectomy (9/2013) have been good; he has had a couple of radiation zaps and so far, has not taken any medications.

    the scan times are stressful.

    he was a teacher in a very violent urban area with an administration that was unresponsive and incompetent so that before the cancer, he was more than ready to retire.

    after using up all his sick leave (7 months worth), he did retire. He has social security and retirement. He's old enough for medicare and like Fox, he pays for nothing.

    my job allows me to work and take time off at my choosing so we have taken 3 trips to Hawaii with the 4th in June. We try to see our granddaughters (age 1 and 2) once a week and our grandson (8 months) every 6 weeks.

    if the world settles down, we want to go to Istanbul in September.

    Sarah

     

  • donna_lee
    donna_lee Member Posts: 1,041 Member
    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.

    I seem to have placed my order when all I was asked to do

    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
    Footstomper Member Posts: 1,237 Member
    donna_lee said:

    I seem to have placed my order when all I was asked to do

    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

    Vent

    I'm amazed how few people vent on here. 

    I know we want to be positive, but we cant be all the time. Sometimes I just get bloody angry.

  • todd121
    todd121 Member Posts: 1,448 Member

    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.

    Leaving Early

    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

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    todd121 said:

    Leaving Early

    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

    Terry Pratchett

    Who died last week was brilliant.

    Good Omens (written with Niel Gaiman is a fantastic story of the apocalypse. The four riders of the apocalypse are joined by a bunck of hells angels. Macdonalds is revealed as a plot by famine to starve the world.

    And God aand the devil miss the antichrist who grows up to be a perfectly normal lad

    Brilliant book by a brilliant writer DEATH becomes fond of the objects of his work

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

  • Srashedb
    Srashedb Member Posts: 482 Member

    Giving up smoking

    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

    Smoking

    I don't know if it's age but I do recall cigarettes being called "fags"; I know that the addiction is tough to overcome.

    smoking is different for all, I think; there is a lot of symbolism involved. My husband had a tough time thinking of himself as a "non-smoker". For me, it was losing my voice and hoarseness that became embarrassing. I didn't know if it wad throat cancer and as I waited for the test results, I knew that if it WAS cancer, it was self-inflicted.

    my niece heard my voice and drove 90 miles each way just to drop off an e-cig kit; I tried it and it worked for me. One of my sons grew up hating smoke and banning it from everything he controlled. He married a woman who shares that distaste and now they have a baby. This has been one of my greatest joys; to hold that baby and to know that my son feels good about it.

    i think JoJo is right in pointing out that my husband may feel depressed; I think it is that and maybe something that he can control along with the addict's belief that he can have only one every once in a while. He is probably right that it would be fine but for now, I have kept him from smoking in our house, in our car, anywhere that I can see him. He also knows that I can smell it on him so if he is smoking, it is seriously limited.

    i think we are also beginning to accept that every couple of months, a tiny spot will turn up somewhere on his spine or ribs; so far, the cyber zap has been the treatment of choice. If he were a young man, we'd worry about a secondary cancer but he's not so we'll take it. And, as long as I am commenting on that, I must say that an MRI has picked up a 1 mm and a 5 mm spot on each L3 pedicle which a CT scan would have missed until it either hurt or got larger, like 3 cm.

    Sarah

  • Srashedb
    Srashedb Member Posts: 482 Member
    Perspective

    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

     

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    Srashedb said:

    Perspective

    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

     

    Our death.. as part of OUR life

    Arleen, thanks for sharing that incredible experience you and your family had with Hospice and end of life.

    My father passed in the most beautiful hospice setting with all of us sleeping beside him. For the last 2 years of his life, he asked that we all pray for him to have a peaceful death. It was there that I learned about the stages of dying and how we still have "spiritual work" to do before we go. He was lucky to have gotten in at all.

    I went to evaluate this Hospice ahead of time by was concerned because it was not only hard to get into (waiting list) but could be too expensive.  As I walked back to my car,  I heard my mother's spirit speak to me and say," Do not worry, It is already worked out."   Low and behold, he was able to be admitted by the dilegent prompting of his Geriatric internist who put in a word with the Medical director. Little did I know that I would switch careers shortly after this hospice experience and end up working in Hospice. And funny that the morning he passed that Geriatric doctor just happened to be walking her dog on the hospice grounds.

    So know that once you decide that treatment is no longer working and/or Palliative care is recommended, you can be eligible for Hospice. In all our insurances there is a special "pot of money" or a Hospice benefit that pays for your care, be it at home, in a hospital, Nursing home/Assisted living or hospice residential setting. Sometimes you have to pay for the room and board in a residential setting, UNLESS you are receiving medical care such an IV Morphine, then your insurance pays all of it.

    While working in hospice, I noticed that some treating MDs hang on and keep offering more and more treatments when they need to allow their patient to decide and to allow them to let go. Sometimes quality of life makes more sense. And for the MD to relinguish HIS treatment care over to the controll and decision of the lpatient can be challenging.

    Going into hospice care doesn't mean you are actively dying either. Just means that you have a diagnosis that an MD deems wil not improve and you are declining toward end of life, around 6 months. However, IF you want to try a treatment again, you sign off of hospice and come back when you are ready again.  Some folks stay on hospice care for a year or longer.

    What you GET is nursing checks weekly, your palliative meds,  nurses aide weekly, a social worker and chaplain care for all those "other" needs that sometimes families are not good at discussing. It is a trained team who wants your to be comfortable and will support you and your family members.

    So I have written into my Power of Attorney for healthcare how I want hospice when all treatments are no longer working. A good doctor will offer you that option. And it takes a MD order to get into hospice care. Make sure you have a good rapport with your oncologist and that he/she will respect YOUR wishes. Make sure too your family is involved, informed about the end stages and is not scared by NOT knowing.

    Just my 2 cents. ..it can be a wonderful, enriching experience without fear. There is such a thing as Pre-grieving and yes, it is okay to have relief once the patient passes. All is okay, it is YOUR life.. and you have control over YOUR passing.. if.. you choose.

    Hugs everyone for KEEPING THIS REAL! My hope is that more states (in USA) will approve of Death With Dignity laws..it is worth fighting for.. again, MY opinion..
    Jan~

     

  • a_oaklee
    a_oaklee Member Posts: 566 Member

    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

    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