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How about a thread for people not recently diagnosed?

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

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

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

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

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

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

donna_lee's picture
donna_lee
Posts: 894
Joined: Feb 2009

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

Donna

Srashedb
Posts: 482
Joined: Dec 2013

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

Sarah

I am alive
Posts: 316
Joined: Jul 2012

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

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

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.

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

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's picture
Footstomper
Posts: 1238
Joined: Dec 2014

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

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

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

Blueraidermike
Posts: 25
Joined: May 2013

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. 

Billy's Wife's picture
Billy's Wife
Posts: 52
Joined: Jan 2014

Fox,

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

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

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

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

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

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

With Love and Hope,

Arleen

 

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

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

Jan4you's picture
Jan4you
Posts: 1317
Joined: Oct 2013

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

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

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

I am alive
Posts: 316
Joined: Jul 2012

Arleen,

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

Mike,

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

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

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

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

And Fox,

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

Bellweather
Posts: 100
Joined: Jun 2013

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

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

I too drop off of the forum to live, only 

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

 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

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's picture
Allochka
Posts: 865
Joined: Nov 2014

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

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

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

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

Hugs again,

Alla

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Thank you, Alla.

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

Thank you for your kind words!

 

 

Allochka's picture
Allochka
Posts: 865
Joined: Nov 2014

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

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

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

a_oaklee
Posts: 437
Joined: Nov 2013

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

Srashedb
Posts: 482
Joined: Dec 2013

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's picture
Jojo61
Posts: 1310
Joined: Oct 2013

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

 

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

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
Posts: 482
Joined: Dec 2013

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

brea588's picture
brea588
Posts: 240
Joined: Jul 2012

I know I am stage 1 but I want to continue to be around the ones I know and have known for 3 years now.  You begin to feel like family to each other.  When you first posted this I  was at a loss for words and just wanted to think about it.  Now, after 2-3 weeks I would just suggest to you if you are looking for answers,  go back and read this as if you never wrote this and this is not your post and it is someone else post.  What would you think, or do differently.  My prayers are with you.  My husband does not discuss my health either.  It's almost like if you dont talk about it , it does not exist.  But he does try to help me any way he can.  I am like you , I dont discuss cancer with my friends anymore or much with anyone in my family.  I am stage 1 but since colon cancer 18 months ago that had not spread either, thank you Jesus, the genetic testing changed everything as far as reoccurences.  My onc said to watch everything as I was high risk in 8 different cancers but especially RCC and colon.  As I go this thur for ct scan for kidneys I have a little concern as I was passing some blood in urine 4 weeks ago.  By the time u/a was done it was clear.  So pray for me and I will pray for you everyday.  BtW my hip is doing better from surgery 7 wks ago.  GO for check up this next week too on that.  WOW makes a busy week LOL

 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Brea, you have had your share of scares and issues. I will pray that your results are going to be all good! The genetic testing results are a heavy load too. Talking about it here can certainly help with that load.

I know it isn't easy to not speak to your spouse about what you are going through. I keep it from him so much now, I don't even realize it. Last week when I was making arrangements with my sister to go to the hospital, he asked what scans I was going for! I am beginning to wonder if it is more about my conditioning than about him not wanting to talk about it. He doesn't like to talk about it, no doubt, (I also think it is an out of mind/it doesn't exist mentality|) but I think I need to re-evaluate my own actions with this.

Hugs

Jojo

 

 

Jan4you's picture
Jan4you
Posts: 1317
Joined: Oct 2013

My dear Jojo, and others who may have a spouse that doesn't deal (verbally) with your cancer/treatment/issues/mortality. ... may I suggest you show him how to be there for you. Again, isn't this more about you now? If the tables were reversed, wouldn't you want to learn how to be there for your partner/spouse too?

Why not sit them down, when its a good time ( when you're not hurting or angry) or write a letter to them on what you need and why. Again, my thinking is that most do not like any conflict or icky things to deal with in our lives.. so not talking about it is one way.. gulp. But convince me that by NOT addressing those icky parts helps you with your recovery?

Why not try to either write or speak to them about HOW and WHAT you need? You could say, I know you may not like talking about my cancer issues, but this is what I need from you. Then list your needs. (maybe a few to start with).

Don't you think they need to know how their lack of support affects you, your mood, energy and ability to go on this journey without their support?

Use "I" statements, not "you" statements which will only put them on the defense.

Make it about the behaviors, not the person. Like, "When I tell you ______ and I don't hear any response from you, I wonder if you are not sure what to say, or just do not want to face this issue with me. I can understand both, but this is what I would like you to try.. _____ name the behavior you'd like from them.  Nod your head, hug or touch my hand, but I need to know WE're connected throughout this time. I need you to be there for me.

Now for those of you having a partner smoke around you, or even what lands on their hair/skin/clothing, you must speak up about how it affects YOUR health. Please!

Remember, doesn't your silence say its okay? So they keep doing it? Or not doing what you need from them/

Maybe I am overstepping the bounds here.. but it saddens me that you ONLY have 1 chance  in your lifetime to be the loving spouse/partner.

You have no idea how this drains YOU from geting YOUR needs met.

It is OKAY to get your needs met, right?

It is okay to be the teacher, so teach othes how YOU want to be treated!

Please don't allow those closest to you to NOT learn how to be their best, to be the most loving person in your life, ESPECIALLY when you need them the most. It will only leave them with regrets..

What do you guys/gals think?

Jan

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

Wow. I feel so honored you shared this information with us.

Very difficult indeed.

I can relate. My boyfriend smokes, but goes outside. Still, when we're outside he smokes around me. He doesn't hesitate even in my current situation to throw a little fit about petty stuff and get me all upset (or try to, it's harder nowadays, because honestly stressing over him is way down my priority list these days).

I started taking an anti-depressant medication about a month ago. I was getting pretty depressed and anxious. I think it's helped. I talk to a therapist. It helps.

Similarly, I'm concerned about money and where my money will go.

Hey, excuse me if I'm out of line, but if you want your pension to go to your kids, divorce him, and you can give your half to your kids. I think you can leave your half to your kids through a will even if you don't want to divorce him. I don't think you have to leave the whole thing to him. I divorced and took my half and left it all to my kids.

You've worked hard Jojo. You deserve to do what you want to with the money you've put away. Might be worth talking to a lawyer about it. At my work we have this legal plan you can join and get free legal advice/free trust and will written up. I did that.

I'm so sorry you aren't better supported at home. I'm glad you're here!

Hugs,

Todd

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Thank you for your kind thoughts and concerns.

This is a really good place to voice our worries and concerns - we have the common thread that makes everyone understand here.

The smoking is an issue, and I am starting to throw stronger hints that smoking indoors is coming to an end. My mom was a heavy smoker (but my hubby is an even heavier smoker! over 2 packs a day), and this makes me understand the addiction more....which is a bit of a detriment in my situation. lol. But some smokers do have the attitude that smoke outside can be anywhere, around anyone, or even that non-smokers make too big a deal about it. I hope your boyfriend becomes a bit more understanding about the smoking - and your health - soon. I am glad you are seeing a therapist as well. I am doing that too....am down to once a month now, but he has helped me a lot. I am also learning to stand up for myself more.  I am glad that you are learning to prioritize what to stress over. A valuable tool.

I am learning more about my pension and in my situation it is best to cash it out. I have a 30 day window around my 55th birthday that it can be cashed out. I will then invest it and live on its interest. I will arrange it to go to my kids and also some to my husband (just not sure yet what percentages). Also, if my health worsens to a stage 4 before my 55th birthday , it can also be cashed out at that time - which would solve that issue. No divorce necessary! lol. I do love this husband of mine! I may not have portrayed him in the best light, in this thread, but really, his sweetness and patience and humor really have captured my heart.

Hugs

Jojo

 

 

mrou50
Posts: 389
Joined: Mar 2013

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. 

donna_lee's picture
donna_lee
Posts: 894
Joined: Feb 2009

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

a_oaklee
Posts: 437
Joined: Nov 2013

Do you have someone else to talk to about this stuff?  I don't.  My husband (who is the one with RCC) doesn't bring up ANY of these topics.  I come online because I feel a need to hear from other people living with this.  I cannot understand my husbands silence....I am so ready to listen...I can do it without crying.  Very often I just feel we (caregivers and spouses) are just not matched up correctly.  I wish he would tell me all about everything...or anything...just confide in me.  So..mrou50...what would you like to talk about?  When you mentioned "preparing for the end", I realized that because of our age (my husband and I), we should have been putting some things in order all along.  We are trying to do these things now, but I wish the timing was different, and it wasn't because of this illness bringing it to our attention.

Annie

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

I'm now on half pay. Fair enough but mean in spirit, I certainly didnt choose to spend 2 months in an ICU last year.  I have no intention of retirement but it seems to be somewhst forced on me. I cant do a full day at the moment, the diahrea fron Sutent has seen to that. So with the reduction in money from the government I' m a reasonable person to be cut.

I am so bloody bored of this disease!

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Footstomper,

You certainly have a right to be "bloody bored" with this disease!!

It is giving you a run for your money, so to speak, and now you are only getting half of your money because of it! It isn't fair. Is this a new development? Talk to Fox about applying for disability....there are others on here who have been successful in obtaining it and I can't see why you wouldn't be eligible!

Hugs

Jojo

Srashedb
Posts: 482
Joined: Dec 2013

to start with, what is your name? Many visions come to mind with "foot stomper".

I know you don't live in the US so the structure of retirement and health care benefits are different,

That being said, your situation is terrible (financially speaking); dealing with stage 4 cancer, the side effects of treatment and then finances are daunting.

We will count our blessings on the finances which work out to $1200/year which covers everything as well as retirement AND social security which he gets 100% and I get 50% even though I am still working. It definitely gives us peace of mind. We can travel (unless he's put on debilitating meds) which we are trying to postpone until at least after extensive travel this year.

Despite being stage 4, we are reluctant to step into treatment; I've researched this in preparation for our meeting with the oncologist on the 30th.

Husband begins tomorrow on 2 spinal mets which will be 5 sessions of "True Beam" radiation. His left rib, treated last week with radiation, is gone.

It's late and I am rambling

Sarah

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Jojo and Sarah, Most people call me Stomps, because I used to front a singularly unsuccessful band called Floyd and the Footstompers. I do live in the US, MD but I'm a Londoner from the East End.

My mother called me Peter, so that makes me feel instantly guilty. I guess Pete is probably the safest bet

So, Teacher: out of Sick Pay, out of Union sick bank, hours and pay cut by half. Now I'm being told that I'll have to be paid in arrears and so will not recieve my next pay packet at all. The Union are trying to find a solution.

I've looked into disability but it would mean declaring myself unfit for a job I love. Frankly I cannot imagine not working and I reckon that would kill me quicker than anything else.

Anyway just as another kick in the teeth was just the thing I needed, my insurance have just refused to pay for my next scan as they say its too early. Honestly who's in charge of my treatment and my life? The Doctors, my employers or the faceless hordes of endless bloody beancounters?

Sorry. I'll turn my frown upside down tomorrow. Get back in front of my students and the its on with the motley. "Ride! Pagliacco!" and all that.

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

it seems you are not fitting into any of the standard categories they are trying to pigeon hole you into.

I know you don't want to stop teaching....that is very honorable, and lord knows we need more dedicated teachers like you who really are teaching for the love of it. It is teachers like you that truly make a difference in the lives of our young people. I am sure we can all fondly remember a teacher that made a difference in our lives. What if you did go on disability but got into volunteering at the school you are at? Would that satisfy your love of teaching enough? I know it is really only something that you alone can gage if it will be suffiecient.

I am appalled at what the insurance companies can dictate. I hope you get that sorted out....just what you want to do with your precious time!

Hang in there!

Hugs

Jojo

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Bottom line: I want to teach as long as I can. I get letters from postgrads who tell me I was the man who inspired them to aim for the highest. I'm told that the word is, if you take one course in high school, takes Stompers philosophy class. We do everything from Buffy the Vampire slayer to Descartes, Machiavelli to Don Colleoni. From abstract questions on the need for law to how does a cop shoot a black man and not even have to appear in court. It's a life changing course, not least for me.

I hate insurance companies.

Srashedb
Posts: 482
Joined: Dec 2013

I actually like Peter but don't want you to feel guilt; guessing you must be Cathlolic. So, Pete it will be.

teachers are probably the lowest paid, least respected professions and it is heartening to know you want to stay in it.

We were fortunate in having my husband at retirement age although in CA, teachers must pay into a comparable program to social security. My husband's ex-employer is so incompetent, however, that they continue to treat him as not retired which means he can collect under both systems until they figure it out.

the $1200/a year is all the medical payments he needs to make; so far, Medicare has not covered a bone density test since he is male and under 70. Other than that, everything gets paid. i can't imagine the stress of not having insurance cover a scan and having your income take the plunge. 

Is disability permanent or is it something that can changed back? I agree with JoJo about maybe returning to teaching later, maybe as a substitute? Out here, it pays over $100/day (no benefits of course) but it is not something disability would bar you from. 

Sarah

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Not catholic, my mother actually revealed that we were secretly jewish on her deathbed - it was a little strange. Its just that the only time she used my full name was when I was in trouble. Does being secretly Jewish add extra layers of guilt?

Yes I get the impression that if I claim disability I will lose the right to work. If I work 0.5 I retain my benefits and pensions.

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

You gave me a chuckle. Your poor mom thinking she had to keep that secret all that time!

You are inspiring, that is for sure! You need to come teach in Canada - we sure could use you. Teachers are very well paid here - $80 to $95K (of course our dollar is about 30% lower than yours) and the benefits and pension are fabulous. But it isn't an easy job. I am a school secretary in a very needy school and I see what teachers have to deal with. Although it can be very rewarding, it can be frustrating as well.

I hope the right answer reveals itself for you. It isn't a very fair situation.

Hugs

Jojo

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

They have English draft beer in Canada. It would be worth moving just for that.Smile

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

I'm good with the tough kids apparently, what someone called 'reluctant learners'. My reward? They put all the tough kids in my class. Yipee! I've lost three kids to juvenile detention already this year.It can be a bit frustrating.

But I;'m not a hard man or a tough guy. just infinately patient. When I was in the ICU getting IL2 about 60 of my students made and sent me 'get well cards'. Kids always surprise you

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

My understanding was you can work, but they offset your benefit by the amount of your income. You don't lose your disability if you work. You just lose the amount you made that period.

Not sure if I'm correcting what you said or we're agreeing!

But it's not as bad as many people think. In fact, you can get approved and stay approved for up to 5 years yet continue working, then if you can't work, you just stop working and they start paying you.

Todd

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Youre actually supporting what I'm discovering for myself. Its a very foreign system to me, so thanks.

a_oaklee
Posts: 437
Joined: Nov 2013

Sarah, my husband is on medicare and had a bone density test paid for.  He was 66.

annie

Srashedb
Posts: 482
Joined: Dec 2013

Annie:

How did the density test get around Medicare restrictions? This is a test my husband really needs.

Thanks, Sarah

Srashedb
Posts: 482
Joined: Dec 2013

Annie:

How did the density test get around Medicare restrictions? This is a test my husband really needs.

Thanks, Sarah

a_oaklee
Posts: 437
Joined: Nov 2013

It was ordered by the oncologist, like any other test.  We got an appointment, showed up, did the test.  Medicare paid for it.  There was no copay.   Our oncologist did not have any difficulty requesting the test.  It was as simple as a lab test being ordered.

Can you share in more detail whAt you have gone through re this test?

a_oaklee
Posts: 437
Joined: Nov 2013

I just got online with a Medicare website and read the guidelines for bone density.  Perhaps my husband had no difficulty getting this test because he has bone mets.  One of the possible criteria is being at risk for possible pathologic fractures.  Additionally, my husband gets Demosamub injections monthly.  Another possible criteria is that the patient is taking a bone agent.  I guess these two reasons are why we had no problem.  I would think your oncologist could file some type of appeal for coverage.  We have had to do that a couple times for other issues.

Your husband should qualify under the criteria due to the spinal mets.  That's the same as my husband.  the possibility of pathologic fractures of the vertebrae exists.

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

Stomps--insurance companies can be real peaches, can't they?  I had a horrendous experience with mine after my initial diagnosis.  I live in NJ.  I was told I could get a second opinion after my first doc in NJ told me I would need a radical nephrectomy.  I was told I could go to NYC.  I did-to MSKCC.  Found a wonderful urologist-oncologist who confidently told me he would remove only 5% of my kidney with the tumor.  I move forward with him and the hospital.  6-7 weeks into the process and 2 weeks prior to my surgery, my insurance company calls me and tells me I can't go to my doc or MSKCC because they are "out of network."  I check online over and over again-and they are both listed as in network.  My wife and I persisently called, argued, lodged appeals.  I called a lawyer to consider suing them.  I kept pressing.  They were not budging.  Finally, someone suggested that I call a local assemblywoman to tell them what was going on.  Voila!!! The assemblewoman called a Sr. VP at my insurance company.  Three days later--everything was approved.  

I was determined to not take no for an answer.  They f'd up, and I was not going to scratch my surgery and start over.  Dealing with the insurance company was more stressful than the diagnosis and worry associated with "having cancer."  And what made it worse in my mind is that in my 48 years of having health insurance, I never made a claim that required an overnight hospital stay.  I rarely go to the doctor.  The health insurance system in the US is f'd up beyond belief.  It was bad before Obamacare, and unfortunately, Obamacare did not fix the root causes of problems with US health insurance.

Keep pushing on your health insurance company.  I learned that they are trained to keep saying no. Sometimes they back down if you make enough noise.

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